essence, the concepts of insight and phenomenological reduction were ..... An idea of the nature of stroke and its pathophysiology was very clear in my mind as ...
UNIVERSITÀ DEGLI STUDI DI ROMA "TOR VERGATA” DOTTORATO DI RICERCA IN SCIENZE INFERMIERISTICHE
XXVI CICLO
The Lived Experience of Patients and Caregivers After a Stroke
Silvio Simeone, RN, MSN Academic Year 2013/14
Tutors:
Dr. Ercole Vellone, PhD, RN, Prof. Rosaria Alvaro, MSN, RN
Coordinator: Prof. Leonardo Palombi, MD
TABLE OF CONTENTS ABSTRACT OF THE DISSERTATION ............................................................................................ 4 CHAPTER 1.......................................................................................................................................... 7 INTRODUCTION ................................................................................................................................ 7 The Stroke: definition and physiopathology................................................................................. 7 Ischemic Stroke................................................................................................................................. 8 Haemorrhagic Stroke ......................................................................................................................10 Epidemiology of Stroke ..................................................................................................................12 Phenomenology...............................................................................................................................13 Phenomenological Method.............................................................................................................19 Phenomenology and Stroke ...........................................................................................................24 Cohen Methods for Phenomenological Research .........................................................................25 The Steps of Cohen Methodology..................................................................................................26 Research Problem and Goals for the Doctorate Program ............................................................28 Bracketing ........................................................................................................................................31 References ............................................................................................................................................34 CHAPTER 2.........................................................................................................................................45 QUALITY OF LIFE IN STROKE SURVIVOR–CAREGIVER DYADS: A NEW CONCEPTUAL FRAMEWORK AND LONGITUDINAL STUDY PROTOCOL.......................................................45 Abstract ............................................................................................................................................46 Introduction .....................................................................................................................................48 The Study .........................................................................................................................................57 Discussion ........................................................................................................................................66 Conclusion .......................................................................................................................................68 References ........................................................................................................................................70 CHAPTER 3.........................................................................................................................................83 THE EXPERIENCE OF STROKE SURVIVORS THREE MONTHS AFTER BEING DISCHARGED HOME: A PHENOMENOLOGICAL INVESTIGATION ......................................83 Abstract ............................................................................................................................................84 Introduction .....................................................................................................................................85 Methods ...........................................................................................................................................87 Results ..............................................................................................................................................90 Discussion ........................................................................................................................................95 2
References ......................................................................................................................................102 CHAPTER 4.......................................................................................................................................108 THE LIVED EXPERIENCES OF STROKE CAREGIVERS THREE MONTHS AFTER DISCHARGE OF PATIENTS FROM REHABILITATION HOSPITALS ......................................108 Abstract ..........................................................................................................................................109 Introduction ...................................................................................................................................110 Methods .........................................................................................................................................113 Results ............................................................................................................................................116 Discussion ......................................................................................................................................123 References ......................................................................................................................................127 CHAPTER 5 ......................................................................................................................................134 CONCLUSIONS AND FUTURE DEVELOPPMENTS ..................................................................134 References ......................................................................................................................................137 ARTICLES PUBLISHED DURING THE DOCTORAL PROGRAM .............................................140
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ABSTRACT OF THE DISSERTATION Background. Stroke is the leading cause of disability in adults, and has a significant impact on the patient–caregiver dyad.
Returning home after a stroke represents a
challenging experience for patients and caregivers who struggle to adapt to their new life conditions. This might influence their life experience that might change overtime. The international literature reports that during the first month after a stroke, stroke survivors direct their attention only to the recovery of physical function; so a comprehensive first experience after a stroke can be described after three months that the stroke occurs. So far, few studies have been guided by a specific conceptual framework which considers the interactions among pre-existing situations prior to stroke, the new situation caused by the stroke and the moderating effects of environmental and caregiver related variables. Although many studies have been conducted on stroke survivors, few studies have focused on the lived experience of patients at three months after they came home after rehabilitation. Also, few studies have described the experience of stroke caregivers three months after discharge of patients from rehabilitation hospitals. Objective. The objective of this doctoral program was: (1) to design a quantitative and qualitative study to describe stroke survivor-caregiver dyads quality of life after discharge from rehabilitation hospital; (2) to describe the experience of stroke survivors three months after being discharged home from rehabilitation hospitals; (3) to describe the lived experience of stroke caregivers three months after patients are discharged home from a rehabilitation hospital. 4
Methods. In a multi-site longitudinal study aimed at studying quality of life in patients after stroke, a sample of stroke survivor–caregiver dyads has been enrolled at patient discharge from rehabilitation hospitals;
then we conducted three separate studies
corresponding to each doctoral objective. A Longitudinal study was designed to study stroke trajectory in stroke patient-caregiver dyads and two phenomenological studies were conducted for the aim two and three. Results. The first study has shown a new conceptual framework to guide the entire project where a model including how pre-existing situation prior to the stroke, the new situation mediation post stroke and situation moderators will predict patient-caregiver dyad outcomes. In the second phenomenological study five themes emerged from the phenomenological analysis of the interviews and the field notes: deeply changed life, vivid memory of the acute phase of the stroke, slowed lives, relief after recovering from stroke, being a burden for family members.
Seven themes emerged from the
phenomenological analysis of the third study: deeply-changed life; re-appreciation of the relationship with patient and family members; increased workload; difficulties in getting support from the national health-care system; lack of preparation for caregiving; difficulties in coordinating caregiving, family and personal life; relief after patient’s recovery. Conclusion. This doctoral program has provided a new conceptual framework to study the stroke trajectory in stroke patient-caregiver dyads. The two phenomenological studies have shown the early and comprehensive experience of
stroke survivor-
caregiver dyads. Findings of this doctoral program could inform educational 5
interventions that could be implemented by healthcare professionals to help stroke survivor-caregiver dyads, to better cope with life changes and encourage them to adapt to daily life limitations caused by stroke. For stroke caregivers, future interventions should improve caregiver preparation for caring for patients and should educate caregivers about how to use the resources of the national health system.
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CHAPTER 1 INTRODUCTION The Stroke: definition and physiopathology
A stroke, shot from the Latin, or in English “stroke”, is defined by the WHO as a sudden appearance of signs and/or symptoms related to focal deficits and/or global coma of brain function, lasting more than 24 hours or fatal, and not attributable to another cause if not apparent to cerebrovascular disease (WHO, 1978). Regardless of the cause, the brain affected by stroke lacks blood flow; this results in a functional neurological deficit more or less serious that can be sensory or motor. The brain needs a constant supply of oxygen and glucose, which are secured from the bloodstream. Unlike other organs, the brain is not able to build up stocks of glucose to survive in case of a loss of blood flow. Therefore, just a few minutes of interruption to the regular supply of oxygen and glucose can cause the death of brain cells (neurons) in the area not supplied with blood. By extension, the time evolution and the reversibility of symptoms differ based on the type of stroke: Transient ischemic attack (TIA): Sudden onset of signs and symptoms referable to and concentrated on cerebral or visual deficits due to insufficient blood supply lasting less than 24 hours. This type of attack is considered a bell after the alarm for the occurrence of a stroke. Minor stroke: A stroke in which symptoms resolve within 7–21 days after the onset, leading to the absence or minimal impairment of autonomy. 7
Major stroke: Ischemic or haemorrhagic stroke with severe neurological deficit, attributable to a greater extent of brain injury within hours or days after the onset of the first symptoms; usually irreversible (SPREAD, 2007).
There are also anatomical and clinical differentiations between ischemic stroke and haemorrhagic stroke.
Ischemic Stroke
Also referred to as cerebral infarction, ischemic strokes are caused by the blockage of blood flow to the closure of an artery that carries blood to the brain. The resulting deficiency is due to an interruption of blood supply to the obstruction of an artery of a region of the brain. The consequence of this lack of blood supply is the immediate cessation of supply to the brain cells of oxygen and glucose, resulting in arrest of their metabolic processes and after a few minutes their death (Robbins et al., 2010). Focal ischemia reduction of the blood supply is district and clinically manifests with symptoms varying according to the duration, extent, speed of onset, and efficiency of the collateral circulation. Cerebral infarction is defined as the death of brain tissue that occurs in conditions of insufficient blood supply. In the case of local cerebral ischemia, there are areas usually located at the centre of the vascular territory whose flow is severely compromised, and other areas, usually located on the outskirts of the territory’s vascular compromise, which receive collateral circulation from the vascular territory’s 8
neighbours. The air adjacent to the heart of the lesion is called ischemic penumbra and is characterized by cells with compromised functionality but nevertheless still viable because sprayed blood side by circles that have come to form. Unfortunately, this region is at high risk because ischemia carries a number of serious consequences due to the side effects of biochemical reactions that trigger cytotoxic (Robbins et al., 2010). The areas in the ischemic penumbra are responsible for neurological symptoms but remain viable and theoretically recoverable. The blockage of synaptic transmission is completely reversible, at least during the acute phase of ischemia, if the flow is restored with values above the ischemic threshold. As previously stated, the ischemic stroke is caused by an obstruction of a cerebral artery, which causes a substantial or total interruption of the physiological blood flow.
The causes of such an obstruction may be due to a variety of factors:
Thrombus: Blood clots are a subsequent atherosclerotic disease, or the deposit on the walls of the arteries of lipoproteins (cholesterol) carried by the blood. The filing of such plaques causes wrinkles in the lumen of blood vessels, which are normally smooth. If at some point cerebral artery plaque cracks, consequently there is an infiltration of the area with white blood cells and platelets that determine the formation of clots on the wall of the artery, the so-called thrombi. Thrombi can considerably clog the lumen of the vessel in which it causes ischemia.
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Embolus: The embolus is a mass of non-homogeneous material that is transported by the blood stream. It can consist of a blood clot formed in a different anatomical region than the encephalon and then detached and transported to the cerebral arteries from the bloodstream. The regions from which they commonly originate are lower limbs affected by deep vein thrombophlebitis; the heart, due to various arrhythmias such as atrial fibrillation or myocardial infarction; and the carotid artery due to the presence of atherosclerotic plaques.
Haemorrhagic Stroke
Haemorrhagic strokes are caused by the rupture of a cerebral artery. This can occur in three different circumstances: a sharp rise in blood pressure (resulting in cerebral haemorrhage); the rupture of an aneurysm, that is, of a portion of the wall of an artery that is malformed (resulting in a subarachnoid haemorrhage); and impaired blood clotting, for example following treatment with anticoagulants (Robbins et al., 2010). Haemorrhagic strokes occur when a vascular structure of the brain breaks. Some of the most common conditions that cause haemorrhagic stroke include hypertension and the presence of malformations of the wall of the arteries, or aneurysms. A less frequent cause of cerebral haemorrhage is the rupture of arteriovenous malformations (MAV), which are a “ball” of small malformed arteries present from birth. Intracerebral haemorrhage is another rare condition that is caused 10
when a cerebral vessel breaks down and sheds blood into the surrounding tissue, resulting in damage to brain cells. Hypertension is the most common cause of this type of stroke. Over time, high blood pressure can increase the fragility of the small arteries of the brain, making them more susceptible to breakage. We will distinguish between several types of haemorrhage in the following list: Subarachnoid haemorrhage: Bleeding occurs in the brain or more frequently on its surface, between the layers of tissue that surround and protect the brain tissue (the arachnoid). This type of stroke is usually caused by the rupture of an aneurysm, a fragile “balloon” grown on the surface of the wall of the arteries of the brain, which can develop over years or be present from birth. Cerebral haemorrhage in a “capsular” or typical site: The haemorrhage is localized to thalamic and capsular-basal nucleus, the prognosis is very strict when the extent of the bleeding is significant, including high immediate mortality (80%) and severe disabling sequelae in survivors for direct damage to the pyramidal fibers that run at that level (hemiplegia facial-brachial-crural). This type of cerebrovascular accident rarely finds indication for neurosurgery. Cerebral haemorrhage in an atypical site: This type of haemorrhage is usually caused by rupture of the middle cerebral artery aneurysm or arteriovenous malformation, resulting in effusion intraparenchymal circumscribed. The most common form corresponds to temporo-parietal-occipital hematoma. After a debut marked by a severe headache sometimes accompanied by dizziness, 11
vomiting, disorders of language, transient paralysis of a limb, or even one or more generalized or partial seizures, coma sets in along with a slowly progressive hemiparesis or hemiplegia. The relatively acute onset is often followed by a period of relative clinical compensation or even the partial regression of symptoms. This is the condition in which neurologic deficit can be better detected: hemisyndrome pyramid of different severity, with or without loss of sensitivity and gnosic, any lateral homonymous hemianopia or deficit quadranopsia, papillary stasis, etc. (Robbins et al., 2010).
Epidemiology of Stroke
Stroke is the third leading cause of death and disability in developed countries (Go et al., 2014), preceded only by heart disease and cancer (Donnan et al., 2008). Each year about 5.5 million people worldwide die of stroke (WHO, 2014). The incidence and prevalence of stroke increases exponentially with increasing age, and is most common among people aged 85 years and over; 75% of strokes occur in people over the age of 65 (Heuschmann et al., 2009). In the United States, it is estimated that a stroke occurs every 40 seconds and, on average, a death is caused by stroke every four minutes (CDC, 2012). In 2011 (Roger et al., 2011), 7 million people in the United States suffered from strokes, of whom 80% were over 65 years. Data indicates that there will be an increase of 21.9% in the prevalence of stroke by 2030, and an estimated 4 million people will be affected by stroke (Heidenreich et al., 2011). In Europe and in Italy, the prevalence of 12
stroke varies from 4.6 to 7.3 per 1,000 people, and the annual incidence varies between 7.5 to 10.1 per 1,000 for persons over 65 years of age (Di Carlo et al., 2003). Stroke is the leading cause of disability in adults; a year after a stroke, about onethird of patients are completely dependent because of high levels of residual disability (SPREAD, 2007). This results in a meaningful impact on individuals, families, and health expenditures (Zorowitz et al., 2013; Factor et al., 2012).
Phenomenology
When we talk about “scientific knowledge”, this refers to a quantitativepositivistic connotation (Streubert & Carpenter, 1999). However, the inability to quantitatively measure phenomena has led to more and more interest in using other approaches to study human phenomena. The tradition of the use of qualitative methods in the study of human phenomena dates back to the social sciences. The practice began because human values, culture, and relationships could not be fully described with only quantitative research methods. The spread of qualitative research in clinical settings has occurred because quantitative approaches were detected and of limited use in answering clinical questions where human subjectivity is involved (Thorne, 1997). In his work, Baron (1985) stated that, “our medical world view is rooted in an anatomical pathologic view of disease that precludes a rigorous understanding of the experience of illness”. Moreover, “to remedy this problem is not just the admonition to 13
Remember That our patients are people, but a radical restructuring of what we take to be disease. The philosophic disciplines of phenomenology is used to present a vision of disease that begins with an understanding of illness as it is lived”. The phenomenological perspective helps restore humanistic understanding in clinical practice, recognizing that the quantitative point of view, through its determinations, devalues the way the conscious experience is related to meaning and importance for humans (Robinson, 2010; Schwartz et al., 1985). The word “phenomenology” is derived from the Greek words for speech (logos) and appearances (phaenomena), and indicates the description of phenomena, or the way in which it manifests a reality (http://www.treccani.it/enciclopedia/fenomenologia/). Phenomenology is a school of thought that was born in the second half of the nineteenth century, as a controversial anti-psychologist and anti-positivist idea (Royal Antiseri,& Leang, 1986). In philosophy, the idea that the human mind can abstract truth from experience through analysis may be traced back to Kant’s “Copernican revolution” that sought to construct a synthesis between rationalism and empiricism. Goldberg (2011), speaking of phenomenology, stated that it is a philosophical position that can be traced back to Plato, but in fact was set aside with the advent of the scientific revolution. Herbert Spiegelberg, an American historian and philosopher, and a promoter of phenomenology in the United States, explains phenomenology as a philosophical movement that has as its main objective the investigation and the description of phenomena as they are experienced on a conscious level, with no theories about their causal explanation, and as much as possible free from preconceptions and 14
knowledge(Spiegelberg, 1975, p. 3). Carel says that the aim of phenomenology is the development of a methodology for describing and ordering experiences and to examine the encounter between consciousness and the world (Carel, 2011). Cohen (1987) claimed that it was Kant in 1764 who described phenomenology for the first time, as the study of phenomena and things. The purpose of phenomenology is to describe the experience (Speziale & Carpenter, 2005). In phenomenology, then, the man is no longer divided and studied in its individual and measurable aspects, but is studied holistically, in its subjectivity (Welch, 1999). Educationally the phenomenological movement is divided into three phases, the preparatory phase,German phase andFrench phase. The primary members of the preparatory phase were Franz Brentano and his most important disciple, Carl Stumpf. Brentano, a German philosopher and psychologist who lived in the second half of 1800, invited the researchers of the time to focus not so much on the contents of the mind, but on the acts or mental processes. According to Brentano, at the base of psychic phenomena there is intentionality. The main goal of phenomenology during this stage was to clarify the concept of “intentionality” (Spiegelberg, 1975); intentionality means that one’s consciousness is always conscious of something (Speziale & Carpenter, 2005). A person cannot hear without hearing something or believe without believing in something (Cohen, 1987). Stumpf, through his work, also failed to demonstrate the rigor of phenomenology. The second phase of the phenomenological movement is called the German phase. The main leaders of this phase were Edmund Husserl and Martin Heidegger. 15
Husserl, a student of Brentano, is identified as the founder of the phenomenological movement (Vellone et al., 2000); he believed that philosophy was to become a rigorous science that would restore contact with the deepest human concerns. Husserl also claimed that phenomenology was to become the basis of all philosophy and science. He argued that the acquisition of knowledge should not start from pre-conceptual constructions or deductive reasoning, but by looking at the world and everyday life. In this way, you can capture the essence that is stable and more common to the various manifestations of a phenomenon (Husserl, 1970; Husserl, 1968). The “essence” refers to items related to the meaning of something real or ideal, concepts that give a common knowledge to the phenomenon under study (Streubert & Carpenter, 2003), and units of meaning attributed by different individuals to the same action or by the same individuals to different actions (Natanson, 1993, p. 14). In addition to the concept of essence, the concepts of insight and phenomenological reduction were developed during this phase (Spiegelberg, 1975). The “intuition” is an eidetic knowledge (Speziale & Carpenter, 2005), which is the act of bringing to their pure essences objective phenomena present in the consciousness (http://www.treccani.it/vocabolario/eidetico/). It is an accurate interpretation of what is intended in the description of the phenomenon in use. The intuitive process in phenomenological research leads to a common understanding of the phenomenon under study (Speziale & Carpenter, 2005). The “phenomenological reduction” is born from the challenge issued by Husserl for individuals to “return to the things in themselves“, no conceptual assumptions (Spiegelberg, 1975, p. 10). This concept is also related to the return to the original 16
consciousness of the phenomenon under study (Speziale & Carpenter, 2005). Isolating the phenomenon to be studied from what we already know, including our preconceptions and/or prejudices, is the ultimate goal of the reductive procedure. Phenomenological reduction begins with a suspension of beliefs, assumptions, and prejudices about the phenomenon under study; even if a full reduction is impossible because of the intimate relationship that people have with the world (Merleau-Ponty, 1956). This requires putting in parentheses (or bracketing) previous notions or beliefs about the phenomenon for the duration of the study, to prevent such information from influencing the recovery of a pure description of the phenomenon. Heidegger (1996) continued the studies of his teacher by exploring the interpretative element of phenomenology, examining our preconscious ideas about phenomena. Indeed, from Heidegger on we have started to criticize and modify the phenomenological approach (Wojnar et al., 2007). The third phase didactically identified in the phenomenological movement is called the French stage. Maurice Merleau-Ponty is one of the leaders of this phase of the phenomenological movement. The concepts developed in this phase included “being in the world” and “body”. These concepts refer to the belief that all actions are built on the foundation of the perception or the original consciousness of the phenomena (Streubert & Carpenter, 2003). Maurice Merleau-Ponty did not believe in the opposition between body and soul, which was the key concept of his philosophical thought; just as Heidegger said the man is a being in the world. He claimed that there is no causal
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relationship between body and soul but both coexist dialectically (Merleau-Ponty, 1965b). Hans Georg Gadamer, a student of Haidegger and another philosopher involved in the development of phenomenology, focused on the methodology of the study of human phenomena. His thinking has developed elaborations on philosophical hermeneutics. Present since ancient times, the term hermeneutics indicates the technical interpretation of a text; this idea took on particular significance in the twentieth century due to the philosophical work of historicist currents, particularly phenomenological and essentialist. The understanding of a text was seen as conditioned by a circle around the totality of the text and its individual parts; the sense of the whole is constructed starting from the one of the parts, but the latter, in turn, presupposes that it has conferred a preliminary meaning to everything. Gadamer argued that to interpret the phenomena, one had to be free of pre-knowledge and prejudices. The holistic approach is central to the philosophy of nursing (Edwar, 2006). Nursing encourages attention to assisting people as human beings and bases its practice on a holistic system of values in which nurses take care of the mind, body, and soul. Modern nursing practice is based on holistic care and a desire to avoid the reductionism of care; we take care of the whole person and not the diseased organ. Phenomenology, with its emphasis on the meaning, subjectivity, and the consciousness of the living, is well positioned to face the existential nature of disease. Based on Husserl’s philosophy, phenomenology challenges the idea of a singular objective reality that can be isolated and independently measured (Husserl, 1931). For health professionals, the lesson is that 18
the meaning of the disease can only be fully understood by exploring the experiences of patients (Greenfield, 2011). If you ignore until 1970 almost phenomenological nursing manuscripts (Thomas, 2005) later phenomenology became a dominant medium in the pursuit of developing nursing knowledge and, as such, presents “Exhibitions credible of living knowledge for nursing” (Jones & Borbasi , 2004). Currently, phenomenological research is seen within the discipline of nursing as a viable alternative to empirical science (McConnell et al., 2009), helpful in understanding the ordinary, the unexpected, and ineffable elements of human experiences in health and disease (Madjar & Walton, 1999, p. 1). The late and difficult adoption of this method is likely based on the fact that, as mentioned above, quantitative methods are still widely preferred by scientific journals (Earle, 2010).
Phenomenological Method
Many researchers today stand descriptive phenomenology as a phenomenology of interpretation. Descriptive phenomenology constitutes direct exploration, analysis, and description of phenomena in the study, remaining free from external factors that may influence the phenomenon as much as possible, such as religion and culture (Tuohyet et al., 2013). This field seeks to describe the general characteristics of the phenomenon rather than individual experiences (Giorgi, 2008).
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Conversely, the purpose of interpretive phenomenology, which is also called hermeneutics, is to describe, understand, and interpret the experiences of individual participants (Tuohyet al, 2013). These experiences are of course influenced by the social, political, and cultural context and by surrounding subjects (Flood, 2010). The essential difference between these two fields was found in the context in which beings are investigated; for Husserl this context was marginal, while Heidegger’s phenomenology is based on the prospect that understanding the individual cannot be achieved in isolation of their culture, social context, or the historical period in which they live (Wojnar, 2007). To understand the human experience, interpretive phenomenology has introduced the concept of Dasein (the human way of being in the world) to emphasize that individuals cannot themselves be abstracted from different contexts that influence their choices and give meaning to experience (Heidegger, 1962). Even regarding the study of experiencing health or illness, one must consider the context and the family traditions, including economic, political, and cultural subjects. “The purpose of the survey is to explain the phenomenological structure or essence of the experience of a phenomenon in search of unity of meaning that is the identification of the essence of the phenomenon, and its accurate description through the lived experience every day” (Rose et al., 1995). Phenomenology has various philosophical positions, as well as interpretations of procedures, which are all used as guidelines for the research methodology. Recently, there have been criticisms of researchers immersed only in the method and not in the
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deep philosophical knowledge. It's the philosophical knowledge that leads to choice of the phenomenological method of research (Thomas, 2005).
Spiegelberg (1965; 1975) described phenomenology as a movement and has identified six central steps that are common to the various “lines of research”. The first core concept is “descriptive phenomenology”, which implies “the direct exploration, analysis and description of particular phenomena, as much as possible free of unexamined assumptions that are intended to maximize presentation intuitive” (Spiegelberg, 1975, p. 57). Spegelberg describes three phases of this core concept; the first phase, “intuition”, requires a total immersion in the phenomenon under study. The phenomenon is known through the description of the participants, and the researcher is the instrument for data collection. The second phase is the “phenomenological analysis”, or the identification of the essence of the phenomenon being studied. The final phase is “phenomenological description”, in which the phenomenon is described based on groupings of the critical elements of the studied phenomenon. The second core concept is the “phenomenology of essences”, or the exploration of data in search of common themes or essences and establishing relationship models. The third core concept of the movement is the “phenomenology of appearances”, which involves paying attention to the ways in which phenomena appear. This concept focuses its attention on how the phenomenon is revealed. The fourth core identified by Spiegelberg is “constitutive phenomenology”, which studies the phenomena as they are made in our consciousness shared.
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The fifth core concept is “phenomenology reductive”, which occurs throughout the phenomenological research although it is considered a separate process. The researcher should continually consider and dismiss their conjectures, personal assumptions, etc., and grope for the attainment of a pure description of the phenomenon. The
sixth
core
concept
identified
by
Spiegelberg
is
“hermeneutic
phenomenology”; a philosophy about the nature of the understanding of a particular phenomenon and the scientific interpretation of the phenomena that appear in the written words in text. The interpretive approach is based on the thoughts already described by Heidegger and Gadamer. The first stage of any phenomenological study consists of the definition of the research. After a superficial review of the existing literature, the topic is chosen. Purposeful sampling is the type of participant recruitment that is most common for a phenomenological survey. It is generally common for such studies to collect samples from an average of 20–30 people, although there is no clear rule regarding the sample size. In phenomenology, recruitment occurs with the saturation of the data, or when the extracted essences are repeated constantly and do not reveal anything new about the phenomenon under study. A fundamental aspect of these studies is to ensure full respect for privacy. No one is able to determine in advance the content that will be collected in the interviews; during the preparation of the final manuscript, accurate data must be reported while fully respecting the privacy of the participants. After obtaining informed consent for 22
participation in the study, it is good to explicate the methods of collecting data. The researcher himself is a research tool. Open interviews and research diaries are the only tools required for this type of study. Open questions give full freedom to the participants in the study, allowing them to relate their experiences. The research diary is necessary both for bracketing and to write down the so-called “field notes”, or aspects of the “non-verbal language”. During the interview the researcher should have a welcoming attitude and should never interrupt the subjects participating in the study during their exposure. The transition to the next question should occur only after he has exhausted his response, his speech. Awarded with the saturation of the data, we will proceed with the analysis of texts. The next step, therefore, is the analysis of the interviews. Interviews are often performed verbally and audio-recorded. After each interview, the researcher should immediately proceed to the transcript of the interview, integrating text with notes from the field. The researcher then extracts essences and groups them into themes. The issues are generally discussed with the other researchers participating in the study first and subsequently confirmed by the subjects themselves (the participants in the study). This ensures the accuracy of the collected data. Next begins the real phase of literature review, to see how this study arises in view of the international community. The rationale of this phase is to reduce the influence of bias, which may occur upon failing to fully study the subject. Finally, the data review should be followed by creation of the scientific report.
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Phenomenology and Stroke
It can be argued that rehabilitation is rooted in the experience of those who live experientially (the patient) and that these experiential aspects, including the perception and expectations of the patient, are of fundamental importance for the rehabilitation itself (Goldberg, 2011).The medical and rehabilitation trend of recent decades focuses on the process of healing and showing concern to the sick person and not just the disease that struck a specific organ. This approach is deeply holistic and the bond that exists between rehabilitation and results is deeply phenomenological (Goldberg, 2011). This is even more apparent when the pathology affects the brain, the centre of the body, and the adaptive response, which is the case with stroke. For example, the functionality of the human body or a part thereof, and the recovery of the affected part, are influenced by the surrounding culture and premorbid experience, including the experience, expectations, and the participation of caregivers. In phenomenology, stroke is considered a sudden event, which suddenly alters and modifies what would be a “note” in the trajectory of the patient’s lives (Banja, 2011). Stroke alters knowledge of the world and lived experiences. A new vision of oneself emerges and must deal with a new world and with the spectre of a pre-morbid condition.
Rehabilitation should encourage the integration of these visions, creating the new version of one’s place in the new world. This can only happen through a phenomenological reconstruction (Banja, 2011). Phenomenology, with its emphasis on the meaning, subjectivity, and consciousness of the living, is well positioned to face the 24
existential nature of this disease (Greenfield, 2011). The phenomenological approach applies a comprehensive and profound vision of how the persons affected by this disease with disabling outcomes will be “accustomed” to live with this disability; this, in turn, helps with the elaboration of concrete and finalized education and recovery for the patient, for the family, and for the whole community (Greenfield, 2011).
Cohen Methods for Phenomenological Research
The phenomenological method of Cohen (2000) was chosen as the methodology for this dissertation, which combines descriptive phenomenology (Husserliana) and interpretive (Gadamer). Phenomenological methodology was chosen to conduct this doctoral dissertation because it allows a deeper understanding of peoples’ lived experience as well as an investigation of the meanings people attribute to an experience. In fact, according to the phenomenological approach that guided this research program (Cohen, 2000), “Understanding patients’ experiences may guide nurses to interact in ways that may differ from people who lack that understanding” and, “The meanings that patients attribute to their experiences help create the needs they have and how these needs can best be met” (Cohen, 2000, p. 4). Phenomenological methodology was chosen to conduct this doctoral program because, as discussed by Goldberg (2011), the recovery from a stroke is rooted in a patients’ lived experience and the caregiver’s experience, including their perceptions and expectations, which have a deep phenomenological connection.
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This method has been used in the literature to investigate the significance of hydration in caregivers of people with terminal cancer (Cohen et al., 2012); to investigate the experiences of African American women at risk of developing breast cancer (Philips et al., 2011) specifically their experiences in screening programs (Philips et al., 2001); to understand the experiences of nurses working in oncology (Cohen et al., 1994; Cohen et al., 1992); and to explore the experience and quality of life for caregivers of people with Alzheimer’s Disease (Vellone et al., 2012; Vellone et al., 2008; Vellone et al., 2002). Moreover, this method has been used to investigate the experience of communication in people with brain cancer (Swore et al., 2012), and to promote the design of interventions to reduce delirium in patients with advanced malignant disease (Cohen et al., 2009).
The Steps of Cohen Methodology
The Cohen method consists of several stages. The first step is called “bracketing”. Cohen et al. (2000) defined bracketing as the Critical Reflection Technique that helps investigators to be rigorous in analysis. This requires that all investigators who conduct data for analysis describe their own pre-understanding and perceptions of the phenomenon under investigation. This technique reduces the possibility that themes extracted from the analysis reflect the researchers’ prejudices rather than the patients’ experiences. After bracketing, all interviews should be performed in the participants’ natural environment. Conducting interviews in the participants’ natural environment facilitates 26
the description of their experiences. Also, in this phenomenological methodology, interviews are conducted with open-ended questions in order to give complete freedom for participants to describe what is most important to them. In doing so, the participants’ and not the researchers’ “world” becomes the focus of the investigation (Polit & Beck, 2014; Cohen, 2000). The phenomenological interview will begin after participants sign the informed consent form. Consistent with the method, participants will be asked to describe their experience during the last three months since they returned home after discharge from the rehabilitation hospital. As has been successfully used in other research (Godwin et al., 2013; Pierce et al., 2006; Prigatano, 2011), the interviewer should have a welcoming attitude during the interview in order to facilitate caregivers’ describing their experiences. All interviews should be digitally audio-recorded. During and soon after the interviews, the interviewer should write field notes about the environment, the interview setting, the body language, and his own reflections (Cohen, 2000). When participants stop describing their experience and seem to not have anything else to add, the interviewer should ask if they have anything more to say, and end the interview when the participant says “no”. Upon achieving the right sample size, you will only have to extrapolate “saturation data”. Data saturation refers to redundancy in the extracted themes (Porter & Cohen, 2013). After the interview process, researchers should immerse themselves in the data by reading and re-reading the interviews transcriptions and the field notes to extract the themes of caregivers’ experience. To establish the themes’ trustworthiness, extracted 27
themes should be discussed among researchers until an agreement is achieved; discussion with foreign researchers can be done via e-mail. The validity of the final extracted themes is also established by interviewing all participants again after the themes have been extracted. The last phase of the analysis consists of writing the scientific report.
Research Problem and Goals for the Doctorate Program
Stroke has a high prevalence and incidence in Italy due to an aging population. Nevertheless, it is not known how the quality of life for patients and caregivers (dyad) changes over time along the trajectory of the stroke event. Numerous cross-sectional studies have been conducted at the international level both on stroke patients and caregivers to assess their quality of life (Godwin et al., 2013b; Godwin et al., 2013a). However, these studies have a limited ability to understand both the recovery process of the patient and the caregiver experience over time due to the design of the study (Green et al., 2010; McPherson et al., 2011). In addition, few studies that focused on both the caregiver and stroke patients have considered the mechanism of interaction between the situation pre-existing pathology, the new situation caused by the stroke, and the effect of the moderators and environmental variables related to caregiving. Returning home after a stroke is a challenging experience for patients who struggle to adapt to their new life conditions because of physical disabilities, stress, depression, cognitive impairment, and reduced quality of life (Carod et al., 2000; 28
Cerniauskaite et al., 2012). Although many studies have been conducted on stroke survivors’ experiences, few studies have focused on the lived experience of patients when they return home (Rittman et al., 2004; Pallesen, 2014). In addition, although many advances have been made in stroke rehabilitation, which may affect how stroke is perceived by survivors (Knecht et al., 2011; Rosati, 2010), few studies have been conducted in the last decade on these perceptions (Rittman et al., 2014; Donnellan et al., 2013). Prior qualitative studies have often been focused on specific topics, but studies that have considered how stroke survivors’ physical and psychological status changes over time (Pallesen, 2014) and how this might influence the meaning that patients attribute to their condition are currently lacking in the literature. Rachpukdee et al. (2014) recently found that predictors of the quality of life after stroke change between one month and three months from when patients are discharged home. In fact, soon after the stroke, generally within the first month, patients are still focused on physical recovery and do not pay attention to other important aspects of life such as family relationships, which generally emerge three months after patients are discharged home (Rachpukdee et al., 2014). A precise and consistent description of the lived experience of stroke survivors at this specific time (three months after they are discharged home) is lacking in the literature but may be useful to provide better care for patients who experience changing conditions over time. Caregiving for persons who have had a stroke differs from caregiving related to other chronic conditions, such as Alzheimer’s disease or cancer (Glasdam et al, 2010). In other chronic conditions, caregiving often increases gradually, which may allow for an 29
adaptation to caregiving. However, in the case of stroke, caregiving begins suddenly. In addition, the duration of hospital stays for persons who have had a stroke has significantly decreased in recent years (Morris et al., 2014; Hall et al., 2012), which consequently increases the burden for caregivers who begin to take care of their loved ones very soon after the stroke event (Lutz et al., 2011; O’Connell et al., 2003). Descriptions of the experience of stroke caregivers have focused on specific experiences and populations, and have considered varied time intervals from the initiation of caregiving. It is important to note, however, that stroke recovery has a long trajectory and several studies have documented that patients’ psychological and physical status often changes over time (Pallese, 2014; Huang et al., 2013). Rachpukdee et al. (2013) found that even predictors of quality of life in stroke survivors change during the stroke trajectory. Because several studies have found that the condition of stroke survivors affects their caregivers’ conditions (Lutz et al., 2011; Godwin et al., 2013; Carod et al., 2009), these changes in stroke survivors may also have effects on the experience of caregivers. Consequently, the stroke caregivers’ experiences might change over time. Understanding their experiences would improve knowledge on the stroke trajectory from the caregivers’ perspective, which is needed to tailor interventions for caregivers. In considering the above described research problems, the aim of this doctoral program was: 1. To design a quantitative and qualitative study to describe stroke survivorcaregiver dyads quality of life after discharge from a rehabilitation hospital
30
2. To describe the lived experience of stroke survivors three months after being discharged home from a rehabilitation hospital 3. To describe the lived experience of stroke caregivers three months after patients were discharged home from a rehabilitation hospital
Bracketing
At the beginning of my doctoral course, as suggested by the chosen analytical method (Cohen et al., 2000) I performed “bracketing”, which is defined as a “Critical Reflection Technique” (Cohen et al., 2000) that helps extrapolate the purity of the essences. I started to put aside my preconceived ideas on the population under study. An idea of the nature of stroke and its pathophysiology was very clear in my mind as a result of my previous university career. The evolution of medical care and the lengthening of the average life has allowed stroke and its sequelae to enter fully into global attention. Preconceived ideas I had in regard to stroke survivors and caregivers were essentially related to their life after stroke. For patients, living without a permanent disability from birth, the stroke had certainly altered the mechanism of adaptation to the new situation, they have to adapt to a new reality; moreover, my pre-knowledge on stroke made me assume that the experience was influenced by the type and by a series of affected organs and limbs. I believed that the majority of patient experiences were probably due to the type of stroke that was suffered and the acute care and rehabilitation that was provided. In my 31
preconceptions, the reduced functionality of a hand is certainly very different than losing full utilization, and walking with a limp still allows a minimal ambulation compared to those forced to remain in a wheelchair or those who are bedridden. Convinced that in the actual period much importance is given to appearance, I hypothesized before the study that the physical consequences would affect the social relationships of patients; altering their way of life as a logical consequence. Regarding the caregivers of stroke survivors, however, the main preconceived notions I had were inherent to becoming caregivers, the influence of the economic crisis and its effect on the providers of care, and the bureaucracy of the National Health Service. Culturally, the Italian population is prone to aid families with sick relatives, so my preconceived idea was that a subject of the original family would take care of stroke survivors. During my doctoral course, Italy, like other nations of the European community and the world, faced a severe economic crisis, strains of which are still alive. Consequently, I assumed that the economic crisis would affect caregivers in their role and in their choices. Caring for a sick person certainly requires time and economic burden and could result in difficulties dealing with unexpected expenses. Proper care could suffer deviations inherent in different family priorities. Other prior knowledge that I thought could affect the life experiences of patients and caregivers involved the National Health System and its bureaucracy. Working in the field, I have often personally had trouble with the bureaucratic reality, which is not easy to understand. When I embarked on this doctoral project I was certain that both stroke survivors and their caregivers would have to confront this reality. The image I 32
had of the patient and the caregiver was that of two frightened people with important needs, who stood at the entrance of a huge maze that twisted among winding streets like a ball of wool and had a tiny exit door. Moreover, the economic crisis had created a redistribution of monetary resources with steep cuts in sectors that were deemed nonessential. In recent years, the policy has often decided to reduce the support services for groped to enhance the treatment in acute phases; sometimes was spent more instrumentation and renewal of it that the shortage of individuals dedicated to helping (and the use of such advanced equipment). This has influenced the method of delivering assistance and health education.
33
References
Banja
JD.
(2011)
Stroke
rehabilitation
and
the
phenomenological
reconstitution of the self. Top Stroke Rehabil. , Jan- Feb;18(1):24-9.
Baron RJ.(1985) An introduction to medical phenomenology. I can’t hear you while I’m listening. Ann Intern Med.,103:606–611.
Carel H. (2011). Phenomenology and its application in medicine. Theor Med Bioeth. ,Feb;32(1):33-46;
Carod-Artal FJ, Ferreira Coral L, Trizotto DS, Menezes Moreira C. (2009). Burden and perceived health status among caregivers of stroke patients. Cerebrovasc Dis , 28:472-480.
Carod-Artal J, Egido JA, Gonzalez JL, et al (2000). Quality of life among stroke survivors evaluated 1 year after stroke: Experience of a stroke unit. Stroke , 31:2995–3000.
Center for disease Control and Prevention, National Center for Health Statisitcs. Compressed Mortality File 1999-2009. CDC WONDER Online Database, compiled for Compressed Mortality File 1999-2009 Series 20, N.20, 2012.
Undelying
cause-of-death
1999-2009.
http://wonder.cdc.gov/mortSQl.html.[Accesso Dicembre 2014].
Cerniauskaite M, Quintas R, Koutsogeorgou E, et al. (2012). Quality-of-life and disability in patients with stroke. Am J Phys Med Rehabil , 91: S39–S47.
Cohen MZ, Haberman MR, Steeves R, Deatrick JA.(1994) Rewards and difficulties of oncology nursing. Oncol Nurs Forum.Sep;21(8 Suppl):9-17. 34
Cohen MZ, Kahn D and Steeves R.(2000) Hermeneutic phenomenological research: A practical guide for nurse researchers. Thousand Oaks, California: Sage.
Cohen MZ, Pace EA, Kaur G, Bruera E. (2009) Delirium in advanced cancer leading
to
distress
in
patients
and
family
caregivers.
J
Palliat
Care.,Autumn;25(3):164-71.
Cohen MZ, Sarter B. (1992) Love and work: oncology nurses' view of the meaning of their work. Oncol Nurs Forum. ,Nov-Dec;19(10):1481-6.
Cohen MZ, Torres-Vigil I, Burbach BE, de la Rosa A, Bruera E (2012)The meaning of parenteral hydration to family caregivers and patients with advanced cancer receiving hospice care. J Pain Symptom Manage., May;43(5):855-65.
Cohen, M.Z (1987).A historical
overview of the phenomenological
movement. Image,19(1),31-34.
Cohen, M.Z. (1987).A historical
overview of the phenomenological
movement. Image,19(1),31-34.
Di Carlo A, Baldereschi M, Gandolfo C, et al.(2003) Stroke in an elderly population: Incidence and impact on survival and daily function. The Italian Longitudinal Study on Aging. Cerebrovasc Dis ,16: 141–150.
Donnan GA, Fisher M, Macleod M, et al.(2008) Stroke. Lancet, 371: 1612–1623.
35
Donnellan C, Martins A, Conlon A, et al.(2013). Mapping patients’ experiences after stroke onto a patient-focused intervention framework. Disabil Rehabil , 35: 483–491.
Earle V. Phenomenology as research method or substantive metaphysics? An overview
of
phenomenology's
uses
in
nursing.
Nurs Philos.
2010
Oct;11(4):286-96.
Edward K.L. (2006) A theoretical discussion about the clinical value of phenomenology for nurses. Holistic Nursing Practice, 20(5), 235–238.
Fattore G, Torbica A, Susi A, et al.(2012) The social and economic burden of stroke survivors in Italy: A prospective, incidence-based, multi-centre cost of illness study. BMC Neurol ,12:137.
Finlay L (2008) A dance between the reduction and reflexivity : explicating the 'phenomenological psychological attitude'. Journal of Phenomenologicai Psychology. 39. 1. 1-32.
Flood A (2010) Understanding phenomenology'. Nurse Researcher., 17, 2, 7-1.
Flood A (2010) Understanding phenomenology'. Nurse Researcher., 17, 2, 7-1.
Fraas MR. (2011). Enhancing quality of life for survivors of stroke through phenomenology. Top Stroke Rehabil,18:40-46;
Giorgi A (2008) Concerning a serious misure understanding of the essence of the
phenomenological method in psi'chologi'.Journal of Phenomenologicai
Psychology.39, 1,33-58.
36
Glasdam S, Timm H, Vittrup R. (2010). Support efforts for caregivers of chronically ill persons. Clin Nurs Res , 19:233-265.
Go, A. S., Mozaffarian, D., Roger, V. L., Benjamin, E. J., Berry, J. D., Blaha, M. J., et al. (2014). Executive summary: heart disease and stroke statistics--2014 update: a report from the American Heart Association. Circulation, 129(3), 399-410.
Godwin KM, Swank PR, Vaeth P, Ostwald SK. (2013).The longitudinal and dyadic effects of mutuality on perceived stress for stroke survivors and their spousal caregivers. Aging Ment Health , 17:423-431 [a].
Godwin, K. M., Ostwald, S. K., Cron, S. G., & Wasserman, J. (2013). Longterm health-related quality of life of stroke survivors and their spousal caregivers. J Neurosci Nurs, 45(3), 147-154[b].
Goldberg G. (2011).Medical phenomenology and stroke rehabilitation: an introduction. Top Stroke Rehabil.,Jan-Feb;18(1):1-5.
Green, T. L., & King, K. M. (2010). Functional and psychosocial outcomes 1 year after mild stroke. J Stroke Cerebrovasc Dis, 19(1), 10-16.
Greenfield B.(2011) Phenomenology as a philosophical orientation for understanding the transformative experience of disabling illness. Top Stroke Rehabil. , Jan-Feb;18(1):35-9.
H.J.Streubert,
D.R.Carpenter.(2003).
Qualitative
Research
in
Nursing:
Advancing the Humanistic Imperative, 3/ed. Lippincott William & Wilkins.
37
Hall MJ, Levant S, DeFrances CJ. Hospitalization for stroke in U.S. hospitals, 1989-2009. NCHS Data Brief 2012:1-8.
Heidegger M. (1996) Being and Time: A Translation of Sein and Zeit (J. Stambaugh, trans.). New York: State University Press of New York.
Heidegger, M. ( 1962). Being and time .J. Macquarrie
& E.
Robinson , Trans. New York: Harper & Row.
Heidenreich, P. A., Trogdon, J. G., Khavjou, O. A., Butler, J., Dracup, K., Ezekowitz, M. D., et al. (2011). Forecasting the future of cardiovascular disease in the United States: a policy statement from the American Heart Association. Circulation, 123(8), 933-944.
Heuschmann PU, Di Carlo A, Bejot Y, et al.(2009) Incidence of stroke in Europe at the beginning of the 21st century. Stroke ,40:1557-1563.
http://www.treccani.it/enciclopedia/fenomenologia/.
http://www.treccani.it/vocabolario/eidetico/.
Huang HC, Chang CH, Lee TH, et al. (2013). Differential trajectory of functional recovery and determinants for first time stroke survivors by using a LCGA approach: a hospital based analysis over a 1-year period. Eur J Phys Rehabil Med , 49:463-472.
Hung JW, Huang YC, Chen JH, et al. (2012). Factors associated with strain in informal caregivers of stroke patients. Chang Gung Med J , 35:392-401.
Husserl E. (1931)Ideas: General Introduction to Pure Phenomenology (D. Carr, trans.). Evanston, IL: Northwestern University Press. 38
Husserl E.( 1968). Ricerche logiche(vol2) Milano:Il Saggiatore.
Husserl E.(1970).Idee per una fenomenologia pura e per una filosofia fenomenologica.Torini:Einaudi.
Jones
J.
&
Borbasi
S.
(2004)
Interpretive
research.Weaving
a
phenomenological text. In: Writing Research. Transforming Data into Text (eds J. Clare & H. Hamilton), pp. 85–101. Churchill Livingstone, Edinburgh, UK., p. 99.
Kang HS, Myung W, Na DL, et al. (2014). Factors associated with caregiver burden in patients with Alzheimer's disease. Psychiatry Investig , 11:152-159.
Knecht S, Hesse S and Oster P.(2011) Rehabilitation after stroke. Dtsch Arztebl Int , 108: 600–606.
Lutz BJ, Young ME, Cox KJ, Martz C, Creasy KR. (2011).The crisis of stroke: experiences of patients and their family caregivers. Top Stroke Rehabil , 18:786797.
Madjar I.M. & Walton J.A. (1999) Nursing and the Experience of Illness: Phenomenology in Practice. Routledge, London.Pag1.
Mahoney FI, Barthel DW. (1965) Functional Evaluation: The Barthel Index. Md State Med J , 14:61-65.
McConnell-Henry T., Chapman Y. & Francis K. (2009) Unpacking Heideggerian phenomenology. Southern Online Journal of Nursing Research, 9(1), 6p.
39
McPherson, C. J., Wilson, K. G., Chyurlia, L., & Leclerc, C. (2011). The caregiving
relationship and quality of life among partners of stroke
survivors: a cross-sectional study. Health Qual Life Outcomes, 9(1), 29.
Merleau-Ponty M. (1956).What is Phenomenology? Cross Current,6,59-70.
Merleau-Ponty
M.(b)
(1965).Fenomenologia
delle
percezioni.Milano:Il
Saggiatore.
Ministro della Salute . Organizzazione dell’assistenza all’ictus: la Stroke Unit. Quaderni del Ministero della salute, 2.
Morris S, Hunter RM, Ramsay AI, et al. (2014). Impact of centralising acute stroke services in English metropolitan areas on mortality and length of hospital stay: difference-in-differences analysis. BMJ , 349:g4757.
Natanson M .(1993).Edmind Husserl Philosopher of infinite tasks. Evanston, IL:Northwstern University Press.pagg14.
O'Connell B, Baker L, Prosser A. (2003). The educational needs of caregivers of stroke survivors in acute and community settings. J Neurosci Nurs , 35:2128.
Pallesen H. (2014).Body, coping and self-identity. A qualitative 5-year followup study of stroke. Disabil Rehabil , 36: 232–41.
Phillips J, Cohen MZ.(2011) The meaning of breast cancer risk for African American women. J Nurs Scholarsh. ,Sep;43(3):239-47.
Phillips JM, Cohen MZ, Tarzian AJ. (2001) African American women's experiences with breast cancer screening. J Nurs Scholarsh. ,33(2):135-40. 40
Pierce LL, Steiner V, Hicks B, Holzaepfel AL. (2006). Problems of new caregivers of persons with stroke. Rehabil Nurs , 31:166-172; discussion 173;
Polit DF and Beck CT. (2014).Essentials of nursing research. 8th ed. Philadelphia: Lippincott Williams & Wilkins.
Porter E, Cohen M. (2013). Phenomenology. In: Trainor A, Graue E, eds. Reviewing Qualitative Research in the Social Sciences. New York: Routledge,:180196.
Prigatano GP. (2011) The importance of the patient's subjective experience in stroke rehabilitation. Top Stroke Rehabil , 18:30-34.
Rachpukdee S, Howteerakul N, Suwannapong N, et al.(2013) Quality of life of stroke survivors: A 3-month follow-up study. J Stroke Cerebrovasc Dis , 22: e70–e783.
Reale G., Antiseri D., Leang M.(1986).Filosofia e pedagogia dalle origini ad oggi.Brescia: editrice La Scuola.
Rittman M, Faircloth C, Boylstein C, et al.(2004). The experience of time in the transition from hospital to home following stroke. J Rehabil Res Dev , 41: 259– 268.
Robbins - Kumar - Abbas - Fausto – Aster. Robbins e Cotran - Le basi patologiche delle malattie - Patologia generale - Malattie degli organi e degli apparati (2010) VIIIedizione. Editore: Elsevier – Masson.
Robinson M.(2010) Absence of Mind. The Dispelling of Inwardness from the Modern Myth of the Self. New Haven, CT: Yale University Press. 41
Roger, V. L., Go, A. S., Lloyd-Jones, D. M., Adams, R. J., Berry, J. D., Brown, T. M., et al. (2011). Heart disease and stroke statistics--2011 update: a report from the American Heart Association. Circulation, 123(4), e18-e209.
Rosati G. (2010).The place of robotics in post-stroke rehabilitation. Expert Rev Med Devices , 7: 753–758.
Rose,P., Beeby,J.,Parker,D.,(1995).Academic rigour in the lived experience of researchers using phenomenological methods in nursing. Journal of Advanced Nursing,21,1123-1129.
Schwartz MA, Wiggins OP.(1985) Science, humanism, and the nature of medical practice: a phenomenological view. Persp Biol Med. ,28:331–361.
Speziale H.J.S., Carpenter D.R. (2005). La ricerca qualitativa: un imperativo umanistico. Ediz italiana a cura di M.Matarese.Idelson-Gnocchi.
Spiegelberg H. (1975)Doing Phenomenology. Dordrecht, The Netherlands: Martinus Nijhoff-pagg3.
Spiegelberg H.(1965). The phenomenological movement: A historical introduction,2nd ed.,vol1-2.Dordrecht, The Netherlands: Martinus Nijhoff.
SPREAD. Ictus cerebrale: Linee guida italiane di prevenzione e trattamento, www.spread.it/files/SPREAD_5_2007_sintesi.pdf
(2007,accessed
26
Novemner 2014).
Streubert J.H., Carpenter D.R.(1999). Qualitative research in nursing(2 ed).Philadelphia:Lippincot.
42
Swore Fletcher B, Cohen MZ, Schumacher K, Lydiatt W. (2012)A blessing and a curse: head and neck cancer survivors' experiences. Cancer Nurs. , MarApr;35(2):126-32.
Thomas S.P. (2005) Through the lens of Merleau-Ponty: advancing the phenomenological approach to nursing research. Nursing Philosophy, 6(1), 63– 76.
Thorne S (1997) Phenomenological positivism and other problematic trends in health science research. Qualitative Health research, 7(2),287-293.
Tuohy D, Cooney A, Dowling M, Murphy K, Sixsmith J. (2013). An overview of interpretive phenomenology as a research methodology. Nurse Res. , Jul;20(6):17-20.
Vellone , Sinapi , Rastelli (2000) [Phenomenology and phenomenological method: their usefulness for nursing knowledge and practice]. Prof Inferm. , Oct-Dec;53(4):237-42.
Vellone E, Piras G, Talucci C, Cohen MZ. (2008) Quality of life for caregivers of people with Alzheimer's disease. J Adv Nurs. , Jan;61(2):222-31.
Vellone E, Piras G, Venturini G, Alvaro R, Cohen MZ. (2012) The experience of quality of life for caregivers of people with Alzheimer's disease living in Sardinia, Italy. J Transcult Nurs. , Jan;23(1):46-55.
Vellone E, Sansoni J, Cohen MZ. (2002) The experience of Italians caring for family members with Alzheimer's disease. J Nurs Scholarsh. 2;34(4):323-9.
43
Welch M.,(1999). Phenomenology and hermeneutics.In: Polifroni EC,Welch M(eds).Perspectives
on
phulosophy
of
science
in
nursing.
Philadelphia:Lippincott Williams & Wilkins.
WHO (World Health Organisation). Cerebrovascular disorders: a clinical and research
classification.
Geneva:
World
Health
Organisation,
Offset
Publication 1978; No. 43.
Wojnar , Swanson
(2007).Phenomenology: an exploration. J Holist Nurs.,
Sep;25(3):172-80;
World Health Organization. The atlas of heart disease and stroke, www.who.int/cardiovascular_diseases/resources/atlas/en/ (2014, accessed 26 November 2014).
Zorowitz RD, Gillard PJ and Brainin M.(2013) Poststroke spasticity: Sequelae and burden on stroke survivors and caregivers. Neurology ,80: S45–S52.
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CHAPTER 2
QUALITY OF LIFE IN STROKE SURVIVOR–CAREGIVER DYADS: A NEW CONCEPTUAL FRAMEWORK AND LONGITUDINAL STUDY PROTOCOL
This chapter is published in the following source:
Savini, S., Buck, H., Dickson, V.V., Simeone, S., Pucciarelli, G., Fida, R., Matarese, M., Alvaro, R., Vellone, E. (2015). Quality of life in stroke survivor-caregiver dyads: a new conceptual framework and longitudinal study protocol. J Adv Nurs.,Mar;71(3):676-687
45
Abstract Aim. To describes a new conceptual framework and the research protocol of a study designed to examine the quality of life in stroke survivors-caregiver dyads. Background. Stroke has a significant impact on the patient-caregiver dyad. Few studies have been guided by a specific conceptual framework which considers the interactions among pre-existing situations prior to stroke, the new situation caused by the stroke and the moderating effects of environmental and caregiver-related variables. Methods. A longitudinal design will be used to study a sample of stroke survivorcaregiver dyads. Dyads will be enrolled at patient discharge from rehabilitation hospitals and will be surveyed every three months for one year. Hypotheses generated from the conceptual framework will test predictors, mediators and moderators of stroke survivor and caregiver quality of life from the pre-existing situation prior to the stroke, the new situation mediation post-stroke and situation moderators. The study is supported by a grant from the Centre of Excellence for Nursing Scholarship, Rome, December 2013. Discussion. This study seeks to identify variables in the pre-existing situation prior to the stroke (e.g. living condition), the new situation mediation post-stroke (e.g. type of stroke and caregiver burden) as well as situation moderators (e.g. social support) that influence stroke survivors and caregiver dyad’s quality of life across the stroke trajectory. Also, the study will inform clinical practice. The proposed framework may be helpful for future research focused on stroke survivor-caregiver dyads. Keywords: stroke, stroke survivor, stroke caregiver, dyad, quality of life, conceptual framework
46
What is already known about this topic
Stroke is a leading cause of death and disability in developed countries.
Stroke has a significant impact on survivors and caregivers.
What this paper adds
The study introduces a new theoretically and empirically derived conceptual framework inclusive of the pre-existing situation prior to stroke, the new situation mediation post-stroke, the situation moderators and dyad outcomes (quality of life).
The conceptual framework will be tested in a proposed longitudinal study to describe stroke survivor-caregivers dyad’s QOL baseline and three, six, nine and twelve months after patients are discharged home.
Implications for practice and/or policy
The results of this study will inform us as to how stroke survivor-caregiver dyads’ QOL change over time across the stroke trajectory.
The results of this study will also potentially provide evidence for the mechanism by which selected predictors, mediators and moderators affect stroke survivor-caregiver dyads’ QOL in order to inform future interventions to improve their QOL.
47
Introduction Stroke is a leading cause of death and disability among adults in developed countries (Feigin et al. 2014). International studies show a prevalence of stroke from 6.2 % to 13.9% in people over 60 years of age (Go et al. 2014) and an incidence per year of 141.3 new cases in men and 94.6 in women per 100.000 among people aged between 65 and 84 years (European Registers of Stroke et al. 2009).
Stroke has a significant impact on stroke survivor-caregiver dyads’ quality of life (QOL) (Cecil et al. 2013, Simeone et al. 2014). QOL is a complex and multi-dimensional construct comprised of objective and subjective elements (Taylor et al. 2008). In general QOL is conceptualised as a combination of physical, psychological, environmental, social, and spiritual aspects and it is also affected by culture (Taylor et al. 2008). About 35% of stroke survivors have severe disabilities and limitations in activities of daily living; 30% suffer from depression and cognitive impairment (Chen et al. 2010), all factors known to influence QOL negatively. In addition, stroke has a significant impact on caregivers who often exhibit low QOL, high stress, burden, anxiety, and depression (Nir et al. 2009). Numerous studies have shown that poor QOL in stroke caregivers is associated with the rehospitalisation of stroke survivors and increased health costs (Perrin et al. 2009, Garcia-Perez et al. 2011).
Several studies have been conducted on QOL both for stroke survivors and stroke caregivers (Green & King 2010, McPherson et al. 2011) but most of these have used a cross-sectional design limiting the ability to understand the process of the patient’s recovery and caregiver’s experience which can change over time (Godwin et al. 48
2013a, Godwin et al. 2013b). Also, few longitudinal studies conducted both on stroke survivors and their caregivers have considered the mechanisms of the interactions among pre-existing situation prior to the stroke, the new situation caused by the stroke and the moderating effects of environmental and caregiver-related variables. This significant gap in the science may be a result of the limited theoretical work conducted in this population. Further research is needed to examine the patient and caregiver perspective on the stroke experience and the resulting QOL outcomes in these stroke survivor and caregiver dyads.
Conceptual framework and background
The conceptual framework presented in Figure 1 will guide this study and was adapted from McCubbin et al. (1983) and Lazarus and Folkman (1984) conceptual models. The conceptual framework of the study was also informed by the extant literature. This literature suggests that QOL in stroke survivor-caregiver dyads is influenced by the pre-existing situation prior to the stroke, the mediation of the new situation post stroke and moderators such as environmental and caregiver-related variables (e.g. continuity of stroke rehabilitation and social support) (Carod-Artal 2012, Ellis et al. 2013). The conceptual framework suggests that the pre-existing situation prior to stroke has a direct influence on the new situation post-stoke and an indirect influence on the QOL of survivor-caregiver dyads (the outcome of the model). The dyad’s pre-existing situation refers to the individual characteristics of stroke survivors and their caregivers as well as the characteristics of their relationship. 49
Figure 1. The conceptual framework of the study
The new situation is the stroke and related caregiving and this is posited to mediate the relationship between the pre-existing situation and the dyad’s QOL. Several situational moderators, such as the amount of social and rehabilitative support available, are hypothesised to influence the relationship between the new situation and the outcomes. As illustrated in the model, QOL outcomes are conceptualised as dyadic outcomes so it is hypothesised that the QOL of stroke survivors and caregivers is interdependent and each influences the other (Baumann et al. 2012). We will discuss each concept further in the following sections.
Pre-existing Situation Prior to Stroke
According to the current literature, the pre-existing situations of stroke survivors and their caregivers including such elements as socio-demographics, living conditions, the
50
affective relationship between the stroke survivor and the caregiver, and the stroke survivor’s comorbidity, can all influence dyad QOL (Baumann et al. 2012).
In stroke survivors, socio-demographic factors that have been found to influence QOL are age, gender, marital status and education. Older age in stroke survivors has been found to be associated with lower physical QOL but higher emotional QOL (Baumann et al. 2012). Baumann et al. (2012) reported that female stroke survivors exhibited greater life satisfaction and mental health than male survivors, and that life satisfaction was positively correlated with five QOL dimensions: feelings, sleep, emotion, cognition and pain (Baumann et al. 2012). The same authors have also found that QOL is better in married stroke survivors than in those who are separated, divorced or widowed (Baumann et al. 2012). These findings suggest that the emotional and social aspects of living in partnership are important to subjective well-being. Education is another variable that influences QOL in stroke survivors since it has been found that stroke survivors who are more educated have better coping and better global QOL that those who are less educated (Dayapoglu & Tan 2010).
Similarly for caregivers, the socio-demographic characteristics that can influence QOL include gender, marital status and whether they are living with the patient (Klinedinst et al. 2009). Several studies (Aprile et al. 2008, Brajkovic et al. 2009) have found increased levels of burden and depression among female caregivers compared to male caregivers. In particular, female caregivers were less likely to ask for help and support in patient care and spent more time on caregiving than males even though 51
having a female caregiver was associated with a better QOL for the stroke survivor (Klinedinst et al. 2009). Female caregivers who consistently scored low on mental QOL were found to be more likely to be unemployed and reported higher burden scores and a lower overall QOL (White et al. 2003). Stroke caregiver’s QOL has also been found to be influenced by education, probably because those who are more educated make more use of medical and social resources (Brajkovic et al. 2009).
Living conditions influence the QOL for both stroke survivors and their caregivers. Stroke survivors and caregivers living in urban areas reported better QOL than those living in rural areas, presumably because they had easier access to social and medical support (Dayapoglu & Tan 2010, Baumann et al. 2012).
Another characteristic that can affect QOL for caregivers and survivors is their relationship. Several authors (Dayapoglu & Tan 2010, Delcourt et al. 2011) have shown that married stroke survivors and stroke caregivers have a better QOL than those who are unmarried, probably due to better support. Other authors found that mutuality in survivor and caregiver dyad is a positive predictor of their QOL (Ostwald et al. 2009b).
Comorbidity in the stroke survivor is associated with both the stroke survivor’s and their caregiver’s QOL. More comorbid conditions in survivors decrease their QOL and increase mortality, especially in females (Icks et al. 2012). Conversely, quality of life, well-being and functional ability has been shown to be higher in stroke survivors with no comorbidities especially for male stroke survivors, those who are currently employed and those with higher education levels. In addition, comorbid conditions 52
have a negative impact on the outcomes of patient rehabilitation
and social
reintegration, and increase the caregiver burden (Van Puymbroeck et al. 2008, Ellis et al. 2013). New Situation Mediation Post-Stroke A stroke is indeed both a new and a sudden situation for the stroke survivor-caregiver dyad. Two groups of variables are associated with this new situation: stroke-related variables and caregiving-related variables. Stroke-related variables can be categorised as type and site of stroke, physical functioning, mood state (anxiety and depression) and stroke complications (e.g. falls). The caregiving-related variables are the burden, anxiety and depression, expenses for care, caregiving duration and time available for caregiving. The type of stroke has a varying impact on stroke survivor QOL (Cadilhac et al. 2010). For example, stroke caused by an intra-cerebral haemorrhage has a deeper impact on QOL than an ischemia (Cadilhac et al. 2010). Also, the site of the brain lesion can have an influence on QOL. It is known that patients with right hemispherical lesions have better functional status, sense of wellbeing and general health than those with a lesion in the left hemisphere of the brain (Dayapoglu & Tan 2010).
Physical functioning is another stroke-related variable influencing stroke survivor QOL. Stroke can limit the activities of daily life (ADL) (Rouillard et al. 2012) which can then reduce participation in work, household responsibilities, and social and leisure activities. As a result, there may be role changes, social isolation and lower
53
emotional and mental QOL, especially in older and male stroke survivors (Rouillard et al. 2012).
Depression and anxiety affect the stroke survivor’s outcome and recovery including QOL (Kouwenhoven et al. 2011). Post-stroke depression affects approximately one third of survivors in the first years after a stroke (Allan et al. 2013). High levels of depression increase the risk of death by more than 10% (Raju et al. 2010) and may cause poorer adherence to treatment (Kronish et al. 2012) and less autonomy in self-care activities (Korpershoek et al. 2011). As a consequence of a stroke, survivors may also experience high levels of anxiety especially during the first weeks following the stroke (D'Aniello et al. 2014). This has been shown to affect stroke survivor QOL (Tang et al. 2013). Stroke is associated with numerous complications that can influence QOL. Falls are very common among stroke rehabilitation patients. It has been estimated that between 14% to 65% of stroke survivors fall at least once during hospitalisation (Weerdesteyn et al. 2008) and up to 73% of patients fall during the first six months after discharge (Batchelor et al. 2010). Severe injuries have been reported in 1% to 15% of falls in stroke survivors (Wagner et al. 2009). Falls adversely affect the stroke survivors QOL and increase their risk of morbidity and mortality (Wagner et al. 2009). Stroke caregiving is particularly burdensome for women who experience depression, anxiety and burden (Carod-Artal et al. 2009, Vincent et al. 2009). Often these variables are interrelated. Burden in female caregivers increases with the length of time spent in caregiving. Caregiving burden is exacerbated by the lack of preparation for 54
caregiving (Visser-Meily et al. 2005). Studies (Visser-Meily et al. 2005) have shown that caregiver burden is related to a caregiver’s depressive symptoms, to the survivor’s activities of daily living (ADL), and to dependency and disharmony in the relationship with the stroke survivor. Caregiver burden influences caregiver QOL and may change over time but the change patterns are still unclear in the literature (Vincent et al. 2009). Literature has shown that decreased psychological QOL in caregivers is correlated with the number of hours spent in caregiving. That is because an increased level of involvement or the number of hours spent in caregiving often results in lower participation in social activities, as well as increased frustration and depression (LurbePuerto et al. 2012). After a stroke, caregivers may experience many direct and indirect expenses due to caregiving: they may need to buy equipment for patient care (e.g. wheelchair) or they may have to give up work. It has been shown that additional expenses worsen stroke caregiver QOL especially if they are older and female (Sreedharan et al. 2013). Caregiving duration is another caregiving-related variable which influences caregiver QOL. In general caregiver QOL is lower at the beginning of the caregiving experience but tends to improve over time (Nir et al. 2009). However, stroke caregiver QOL is significantly lower than in the general population (Visser-Meily et al. 2008). Situation Moderators Moderators are variables that affect the association between an independent and a dependent variable. Specifically, a moderator is an independent variable that affects the strength, either by inhibiting or enhancing, and/or directing the association between 55
another independent variable and an outcome variable (Levy et al. 2011). One group of moderators that can affect the QOL outcomes is included in the conceptual framework of this study: namely, environmental and caregiver-related variables. These variables include social support, the continuity of stroke rehabilitation and caregiving preparation. In the environmental and caregiver-related factors, social support is a powerful moderator in stroke survivor QOL (Lee et al. 2010). In fact, patients who receive support from family, even patients who are more depressed or less educated, report better QOL than those who do not have social support (Lee et al. 2010). Lack of social support is a predictor of lower emotional QOL even among stroke survivors who are more independent in ADL (Kruithof et al. 2013). Taylor-Piliae et al. (2013) found that social support predicts better physical functioning, greater vitality and less depression in stroke patients. The continuity of stroke rehabilitation after discharge from the rehabilitation hospital (e.g. physiotherapy, speech therapy or occupational therapy) was found to influence QOL for both stroke survivors and their caregivers. Among stroke patients the continuity of rehabilitation was associated with a significant reduction of dependence at three, six, and 12 months after a stroke (Aprile et al. 2008, Shyu et al. 2009).
Another variable which moderates the relationship between predictors and outcomes for the stroke survivor and caregiver dyad is caregiver preparation. Ostwald et al, (2009b) and Grant et al. (2013) have shown that low preparedness is a significant 56
predictor of caregiver stress 12 months after discharge, as well as a predictor of negative mood and depression among caregivers.
The Study Aims
The aim of this study is to describe stroke survivor-caregiver dyad’s QOL at discharge from rehabilitation hospital and at three, six, nine, and 12 months later, and to examine how QOL changes over time by looking at the effect of the pre-existing situation prior to the stroke, the new situation mediation post-stroke and any moderation caused by environmental and caregiver-related variables.
Hypotheses
Three hypotheses were generated from the conceptual framework:
1. Dyadic characteristics (pre-existing situation prior to the stroke) predict stroke survivor-caregiver dyad’s QOL (dyadic outcomes); 2. Stroke-related variables and caregiving-related variables (the new situation mediation
post-stroke)
mediate
the
relationship
between
the
dyadic
characteristics (pre-existing situation prior to the stroke) and stroke survivorcaregiver QOL (dyadic outcomes); 3. Environmental and caregiver-related variables (situation moderators) moderate the relationship among dyadic characteristics (pre-existing situation prior to the 57
stroke), stroke related variables and caregiving-related variables (new situation mediation post-stroke), and stroke survivor-caregiver QOL (dyadic outcomes). Design
A longitudinal design will be used. As described above, variables within the conceptual framework, for example caregiver burden, caregiver and stroke survivor depression and anxiety, and caregiving preparation, are likely to vary over time due to changes caused by the stroke survivor’s recovery, to skills acquired in caregiving and to changes in the relationship between the caregiver and the stroke survivor. For these reasons a longitudinal design is appropriate.
Participant inclusion and exclusion criteria
Stroke survivor inclusion criteria are: 1) a confirmed diagnosis of stroke (by tomography or magnetic resonance); 2) discharge from a rehabilitation hospital; and 3) the willingness and ability to provide written consent to participate in the research project. Stroke survivors will be excluded if they have: 1) severe and pre-existing psychiatric or physical/motor deficits (e.g. dementia, Lou Gehrig’s Disease, Parkinson’s Disease, Multiple Sclerosis); 2) a previous stroke, aphasia or reduced level of consciousness; 3) a cancer (either terminal or under active treatment); 4) a severe organ failure condition that is known to be associated with poor QOL.
Inclusion criteria for stroke caregivers are the following: 1) being identified as the main caregiver by the patient without being paid; 2) the stroke survivor’s agreement to participate in the research project; and 3) the willingness and ability to provide written 58
consent to participate. If one member of the dyad cannot be included in the study both stroke survivor and caregiver will be excluded.
Data collection
Intervals of measurement have been planned consistent with the international literature as measured at baseline (time 0, coinciding with the discharge of patients from rehabilitation hospitals) and then three, six, nine and 12 months later.
Guided by the conceptual framework, valid and reliable instruments will be used to collect the data about pre-existing situation prior to stroke, the new situation mediation post-stroke, the situation moderators, and dyadic outcomes (Table 1).
The pre-existing situation prior to stroke has been operationalised as dyad characteristics and will be measured using two socio-demographic questionnaires, both for the patient and the caregiver, the Mutuality Scale (Archbold et al. 1990) and the Modified Charlson Comorbidity Index (Goldstein et al. 2004).
The socio-demographic questionnaires were developed by the investigator team to collect dyad data such as age, gender, marital status, employment, education, income, living conditions and family situation.
The Mutuality Scale (MS) (Archbold et al. 1990) consists of 15 items that measure mutuality defined as the positive quality of the relationship between a caregiver and a care-receiver. There are two versions of the scale: the patient and the caregiver version.
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The MS is composed of four subscales: love and affection, shared pleasurable activities, shared values, and reciprocity. Each item uses a 5-point Likert scale from 0 ("nothing") to 4 ("very much"). The total scale score ranges from 0 to 60. Higher scores indicate higher mutuality. The MS has been used in several studies involving caregivers and care-receivers (Tanji et al. 2008, Ostwald et al. 2009b) and has demonstrated adequate validity and reliability (Archbold et al. 1990). 60
The Modified Charlson Comorbidity Index (MCCI) (Goldstein et al. 2004) is a tool that assesses the presence of 16 comorbid conditions. Each illness is weighted with a score from 1 (e.g. diabetes without complications) to 6 (e.g. cancer or AIDS). The total score ranges from 0 to 31, with higher scores meaning higher comorbidity. This index has been used extensively in stroke studies (Bushnell et al. 2008) and, compared to other comorbidity indices, has been found to be more accurate in predicting functional outcomes after a stroke (Tessier et al. 2008).
The new situation mediation post-stroke has been operationalised as strokerelated variables and caregiving-related variables. Stroke-related variables will be evaluated using a clinical questionnaire, the Barthel Index (Mahoney & Barthel 1965), the Hospital Anxiety and Depression Scale (HADS) (Zigmond & Snaith 1983) and the living and caring questionnaire. Caregiving-related variables will be measured with the HADS, the Caregiver Burden Inventory (CBI) (Novak & Guest 1989) and relevant questions embedded in the socio-demographic questionnaire that record expenses for care borne by the caregiver and hours and duration of caregiving.
The clinical questionnaire and the living and caring questionnaire are two investigator-developed tools that will be used to collect clinical data about type and site of stroke, healthcare costs and complications (e.g. falls).
The Barthel Index (BI) (Mahoney & Barthel 1965) is a widely-used valid and reliable scale that measures physical functioning in 10 activities of daily living (ADL): mobility, feeding, bathing, toilet using, grooming, transfer, dressing, climbing stairs, 61
bowel and bladder control. Score ranges from 0 to 100, where a higher score means greater independence.
The HADS (Zigmond & Snaith 1983) is a 14-item tool that investigates anxiety and depression (7 items for each). Each subscale score ranges from 0 to 21: a higher score corresponds to higher levels of anxiety and depression. The HADS is widely used on stroke patients (Sagen et al. 2010). The concurrent validity of the HADS has been demonstrated as well as its internal consistency reliability ranging from 0.60 and 0.80 for both sub-scales (Bjelland et al. 2002).
The Caregiver Burden Inventory (CBI) (Novak & Guest 1989) assesses the caregiver’s burden related to caregiving. It is a self-report tool, consisting of 24 items, grouped in five subscales: time burden, burden of personal development limitations, physical burden, social burden and emotional burden. All the items are rated on a 4point Likert scale. Higher scores indicate a greater burden (Novak & Guest 1989). Novak & Guest (1989) reported Cronbach’s alphas for subscales ranging from 0.76 to 0.96.The CBI has been also used on Italian caregivers (D'Amelio et al. 2009, Luchetti et al. 2009).
The situation moderators has been operationalised as environmental and caregiver-related variables and will be evaluated with the Multidimensional Scale of Perceived Social Support (MSPSS) (Zimet et al. 1990), the Caregiving Preparedness Scale (CPS) (Archbold et al. 1990) and with information collected with the socio-demographic questionnaire about continuity of stroke rehabilitation. 62
The MSPSS (Zimet et al. 1990) measures the perceived support received from reference individuals such as family members, friends and significant persons. It consists of 12 items which use a 7-point Likert scale from "strongly disagree" to "strongly agree". The score ranges from 0 to 84 with higher score meaning the perception of greater social support. This scale has been used in several studies on caregiving (Yu et al. 2013) and has high internal consistency reliability (Cronbach’s alpha = .87, .85, and .91 respectively for the family, friends and significant others subscales). It has been used also in an Italian study resulting with adequate validity and reliability (Cicero et al. 2009).
The Caregiver Preparedness Scale (CPS) (Archbold et al. 1990) measures the preparedness of the caregiver in caregiving activities such as physical care, emotional support, and the ability to find support services to cope with the stress resulting from caregiving tasks. It is composed of eight items which use a 5-point Likert scale from "not at all prepared" to "very well prepared". The score ranges from 0 to 40: higher score means a better preparedness for caregiving. The CPS has been used in several studies and in stroke caregivers (Ostwald et al. 2009a, Owolabi 2010). The reported alpha coefficient was .72 (Archbold et al. 1990).
The dyadic outcomes have been operationalised as the QOL for the stroke survivors-caregiver dyads and will be measured by four instruments: the Stroke Impact Scale 3.0 (SIS 3.0) (Duncan et al. 1999), the World Health Organization Quality of LifeBrief (WHOQOL- BRIEF) (WHOQOL Group 1998) and the World Health Organization 63
Quality of Life-Spiritual, Religiousness and Personal Beliefs (WHOQOL-SRPB) (WHOQOL-SRPB Group 2006).
The SIS 3.0 (Duncan et al. 2003) is a multidimensional and disease-specific instrument to measure QOL in patients with stroke. It is composed of 59 items grouped in eight subscales measuring the strength of the area affected by stroke, hand functionality, mobility, ADL/IADL, memory, communication, emotions and social participation. All items use a 5-point Likert scale. The SIS 3.0 also has a 0 - 100 VAS item that measures the perceived global recovery from stroke. All SIS 3.0 subscales have a standardised score from 0 to 100, where higher scores mean a better quality of life. This tool has been tested for reliability and validity in several studies (Carod-Artal et al. 2008, Vellone et al. 2010, Vellone et al. 2014). The Cronbach’s alpha coefficients of the SIS 3.0 ranged from 0.83 to 0.90. The correlations between the SIS 3.0 domains with other established outcome measures were moderate to strong (0.44 to 0.84). This scale will be used only for patients.
The WHOQOL-BRIEF (WHOQOL Group 1998) is a 26 item instrument that measures four domains of QOL: physical, psychological, social, and environmental. Each item uses a 5-point Likert scale and a standardised score from 0 to 100 can be computed per each scale with higher scores meaning better QOL. Concurrent validity of the WHOQOL-BRIEF has been demonstrated (WHOQOL Group 1998). The Italian version of the WHOQOL-BRIEF showed adequate internal consistency, ranging from 0.65 for the social relationship domain to 0.80 for the physical domain. Test-retest 64
reliability was also demonstrated with values ranging from 0.76 for the environment domain to 0.93 for the psychological domain (De Girolamo et al. 2000).
The WHOQOL-SRPB (WHOQOL-SRPB Group 2006) consists of 32 questions measuring additional domains of QOL related to spirituality, religion and beliefs. The eight domains are: spiritual connection, meaning and purpose in life, experience of awe and wonder, wholeness and integration, spiritual strength, inner peace, hope and optimism, and faith (Giovagnoli et al. 2006). The Cronbach’s alpha coefficient for this scale is excellent (0.93) as are construct and criterion-related validity (Panzini et al. 2011). This instrument will be used both for stroke survivors and their caregivers.
Data collection procedures
The study has been approved by the ethical committee of the study institution. Patients and caregivers will be approached for enrolment by trained research assistants at the time of patient discharge from rehabilitation hospitals. After the aims of the study have been explained, patients and caregivers willing to participate will sign the informed consent form and will then be interviewed to collect baseline data. In addition, patients’ medical records will be reviewed to collect the clinical variables considered in the study (e.g. type and site of stroke). Since it is the intention of the study to examine changes over time, data collection will be repeated at three-month intervals for one year (three, six, nine and 12 months after enrolment in the study).
Data analysis
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Descriptive statistics (mean, standard deviation, median, interquartile range, frequencies) will be used to summarise the socio-demographic and clinical data and the scale scores. Pearson and Spearman correlations will be used to identify which variables will be correlated with dyad QOL. Linear regression will also be used to identify predictors of the QOL for stroke survivor and caregiver dyads. The actor-partner interdependence model (APIM) will be used to analyse the dyadic data, as this approach allows investigators to evaluate the influence of partners on each other (Ridker et al. 2000). In APIM, the actor effect is the influence of a person's emotions on him or herself (e.g. the effect of depression on QOL). The partner effect is the impact of the person’s emotions on his or her partner (e.g. the effect of depression in the person on the partner’s QOL).The APIM will be used as the dyadic analytical procedure to test how some variables in stroke survivors (e.g. depression) will affect the same variables in their caregivers. Structural equation modeling procedures will be used to test the full model outlined in Figure 1. Specifically, both cross-lagged and growth curve models will be used to examine changes in the study variables, its predictors and outcomes. Multi-group analysis will be used to test the effect of moderators (e.g. social support in dyads with high and low QOL) (Baron & Kenny 1986).
Discussion
This study will provide a description of stroke survivor-caregiver dyad QOL within the first year after a stroke including patterns of QOL over time. The study will also identify predictors, mediators and moderators of QOL for stroke survivor-caregivers 66
dyads as defined in the conceptual framework developed for this study. The longitudinal approach is a powerful method that will examine how the independent variables and dyad outcomes change over time.
The conceptual framework introduced in this paper for examining QOL in both stroke survivors and their caregivers has the potential to provide important information pertinent to the care of stroke survivor-caregiver dyad across the stroke trajectory. Findings are expected to inform clinical practice by identifying the predictors of dyad QOL that are present in the pre-existing situation prior to stroke and the new situation post-stroke. Understanding how environmental related variables moderate dyadic QOL will allow providers to implement a plan of care focused on the needs of the stroke survivor-caregiver dyad.
In addition, this study has been designed with a conceptual framework that can be used by rehabilitation nurses to promote dyadic QOL. Moreover, the results of this study will potentially have important implications for caregiver education including ensuring adequate social support. Understanding the relationship of stroke-related variables such as the type and site of stroke, physical functioning and stroke complications together with caregiver-related variables such as burden, expenses for care and caregiving duration can help prepare caregivers. Nurses play an important role in assessing the support systems available to stroke survivors. Understanding the complexity of the dyadic relationship can help in the development of a plan of care and
67
effective recovery strategy that will deal positively with the negative effects of stroke and reinforce the dyad relationship.
Finally, this study is expected to provide much needed evidence to make institutions aware of the potential difficulties experienced by stroke survivors and their caregivers. If the hypotheses are supported, the implications for transitions in care include strengthening the network of continuity of care between rehabilitation facilities and homecare to ensure that stroke survivor and caregiver dyads have adequate emotional and tangible support throughout the recovery period.
Limitations As this study will be conducted in Italy, the results should be generalised with caution in other countries due to potential cultural differences. Also, this study will be conducted in community settings after patients are discharged home, so results cannot be generalised to the acute or the rehabilitation phases of the stroke during hospitalisation. This study will use a longitudinal design which means that patient and caregiver dropout could be another potential limitation. In order to prevent dropout and to minimise inconvenience for patients and caregivers, all data collection after the baseline will be carried out at the home of the patient and caregiver.
Conclusion Because of the aging of the population, more and more people in the future will be affected by stroke. This increase in stroke prevalence and incidence represents a burden 68
for the health-care system but also a burden for caregivers, who will have the responsibility of caring for the patient when he or she is at home. The dyadic approach guided by a specific conceptual framework developed in this study represents an opportunity to consider the stroke not only as a patient event but as a dyadic event for patients and their caregivers.
Funding
This project was supported by the Centre of Excellence for Nursing Scholarship, Rome, Italy.
Conflict of interest
The authors declare that they have no conflict of interest.
Author contributions
All authors have agreed on the final version and meet at least one of the following criteria [recommended by the ICMJE (http://www.icmje.org/ethical_1author.html)]:
they have made substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data;
69
have been instrumental in drafting the article or revising it critically for important intellectual content.
References
Allan L.M., Rowan E.N., Thomas A.J., Polvikoski T.M., O'Brien J.T. & Kalaria R.N. (2013) Long-term incidence of depression and predictors of depressive symptoms in older stroke survivors. British Journal of Psychiatry, 203(6), 453-460.
Aprile I., Di Stasio E., Romitelli F., Lancellotti S., Caliandro P., Tonali P., Gilardi A. & Padua L. (2008) Effects of rehabilitation on quality of life in patients with chronic stroke. Brain Injury, 22(6), 451-456.
Archbold P.G., Stewart B.J., Greenlick M.R. & Harvath T. (1990) Mutuality and preparedness as predictors of caregiver role strain. Research in Nursing and Health, 13(6), 375-384.
Baron R.M. & Kenny D.A. (1986) The moderator-mediator variable distinction in social psychological research: conceptual, strategic, and statistical considerations. Journal of Personality and Social Psychology, 51(6), 1173-1182.
Batchelor F., Hill K., Mackintosh S. & Said C. (2010) What works in falls prevention after stroke?: a systematic review and meta-analysis. Stroke, 41(8), 1715-1722.
Baumann M., Lurbe K., Leandro M.E. & Chau N. (2012) Life satisfaction of twoyear post-stroke survivors: effects of socio-economic factors, motor impairment, 70
Newcastle stroke-specific quality of life measure and World Health Organization quality of life: bref of informal caregivers in Luxembourg and a rural area in Portugal. Cerebrovasc Dis, 33(3), 219-230.
Bjelland I., Dahl A.A., Haug T.T. & Neckelmann D. (2002) The validity of the Hospital Anxiety and Depression Scale. An updated literature review. Journal of Psychosomatic Research, 52(2), 69-77.
Brajkovic L., Godan A. & Godan L. (2009) Quality of life after stroke in old age: comparison of persons living in nursing home and those living in their own home. Croatian Medical Journal, 50(2), 182-188.
Bushnell C.D., Lee J., Duncan P.W., Newby L.K. & Goldstein L.B. (2008) Impact of comorbidities on ischemic stroke outcomes in women. Stroke, 39(7), 2138-2140.
Cadilhac D.A., Dewey H.M., Vos T., Carter R. & Thrift A.G. (2010) The health loss from ischemic stroke and intracerebral hemorrhage: evidence from the North East Melbourne Stroke Incidence Study (NEMESIS). Health and Quality of Life Outcomes, 8, 49. doi: 10.1186/1477-7525-8-49.
Carod-Artal F.J. (2012) Determining quality of life in stroke survivors. Expert Rev Pharmacoecon Outcomes Res, 12(2), 199-211. doi: 10.1586/erp.11.104.
Carod-Artal F.J., Coral L.F., Trizotto D.S. & Moreira C.M. (2008) The stroke impact scale 3.0: evaluation of acceptability, reliability, and validity of the Brazilian version. Stroke, 39(9), 2477-2484.
71
Carod-Artal F.J., Ferreira Coral L., Trizotto D.S. & Menezes Moreira C. (2009) Burden and perceived health status among caregivers of stroke patients. Cerebrovascular Diseases, 28(5), 472-480.
Cecil R., Thompson K., Parahoo K. & McCaughan E. (2013) Towards an understanding of the lives of families affected by stroke: a qualitative study of home carers. Journal of Advanced Nursing, 69(8), 1761-1770.
Chen R.L., Balami J.S., Esiri M.M., Chen L.K. & Buchan A.M. (2010) Ischemic stroke in the elderly: an overview of evidence. Nat Rev Neurol, 6(5), 256-265.
Cicero V., Lo Coco G., Gullo S. & Lo Verso G. (2009) The role of attachment dimensions and perceived social support in predicting adjustment to cancer. Psycho-Oncology, 18(10), 1045-1052.
D'Amelio M., Terruso V., Palmeri B., Di Benedetto N., Famoso G., Cottone P., Aridon P., Ragonese P. & Savettieri G. (2009) Predictors of caregiver burden in partners of patients with Parkinson's disease. Neurological Sciences, 30(2), 171-174.
D'Aniello G.E., Scarpina F., Mauro A., Mori I., Castelnuovo G., Bigoni M., Baudo S. & Molinari E. (2014) Characteristics of anxiety and psychological well-being in chronic post-stroke patients. Journal of the Neurological Sciences, 338(1-2), 191-196.
Dayapoglu N. & Tan M. (2010) Quality of life in stroke patients. Neurology India, 58(5), 697-701.
De Girolamo G., Rucci P., Scocco P., Becchi A., Coppa F., D'Addario A., Daru E., De Leo D., Galassi L., Mangelli L., Marson C., Neri G. & Soldani L. (2000)
72
[Quality of life assessment: validation of the Italian version of the WHOQOLBrief]. Epidemiologia e Psichiatria Sociale, 9(1), 45-55.
Delcourt C., Hackett M., Wu Y., Huang Y., Wang J., Heeley E., Wong L., Sun J., Li Q., Wei J.W., Liu M., Li Z., Wu L., Cheng Y., Huang Q., Xu E., Yang Q., Lu C., Anderson C.S. & China Q.I. (2011) Determinants of quality of life after stroke in China: the ChinaQUEST (QUality Evaluation of Stroke care and Treatment) study. Stroke, 42(2), 433-438. doi: 10.1161/STROKEAHA.110.596627.
Duncan P.W., Bode R.K., Min Lai S. & Perera S. (2003) Rasch analysis of a new stroke-specific outcome scale: the Stroke Impact Scale. Archives of Physical Medicine and Rehabilitation, 84(7), 950-963.
Duncan P.W., Wallace D., Lai S.M., Johnson D., Embretson S. & Laster L.J. (1999) The stroke impact scale version 2.0. Evaluation of reliability, validity, and sensitivity to change. Stroke, 30(10), 2131-2140.
Ellis C., Grubaugh A.L. & Egede L.E. (2013) Factors associated with SF-12 physical and mental health quality of life scores in adults with stroke. J Stroke Cerebrovasc Dis, 22(4), 309-317.
European Registers of Stroke I., Heuschmann P.U., Di Carlo A., Bejot Y., Rastenyte D., Ryglewicz D., Sarti C., Torrent M. & Wolfe C.D. (2009) Incidence of stroke in Europe at the beginning of the 21st century. Stroke, 40(5), 1557-1563.
Feigin V.L., Forouzanfar M.H., Krishnamurthi R., Mensah G.A., Connor M., Bennett D.A., Moran A.E., Sacco R.L., Anderson L., Truelsen T., O'Donnell M., Venketasubramanian N., Barker-Collo S., Lawes C.M., Wang W., Shinohara Y., 73
Witt E., Ezzati M., Naghavi M., Murray C., Global Burden of Diseases I., Risk Factors S. & the G.B.D.S.E.G. (2014) Global and regional burden of stroke during 1990-2010: findings from the Global Burden of Disease Study 2010. Lancet, 383(9913), 245-254.
Garcia-Perez L., Linertova R., Lorenzo-Riera A., Vazquez-Diaz J.R., DuqueGonzalez B. & Sarria-Santamera A. (2011) Risk factors for hospital readmissions in elderly patients: a systematic review. QJM, 104(8), 639-651.
Giovagnoli A.R., Meneses R.F. & da Silva A.M. (2006) The contribution of spirituality to quality of life in focal epilepsy. Epilepsy Behav, 9(1), 133-139.
Go A.S., Mozaffarian D., Roger V.L., Benjamin E.J., Berry J.D., Blaha M.J., Dai S., Ford E.S., Fox C.S., Franco S., Fullerton H.J., Gillespie C., Hailpern S.M., Heit J.A., Howard V.J., Huffman M.D., Judd S.E., Kissela B.M., Kittner S.J., Lackland D.T., Lichtman J.H., Lisabeth L.D., Mackey R.H., Magid D.J., Marcus G.M., Marelli A., Matchar D.B., McGuire D.K., Mohler E.R., 3rd, Moy C.S., Mussolino M.E., Neumar R.W., Nichol G., Pandey D.K., Paynter N.P., Reeves M.J., Sorlie P.D., Stein J., Towfighi A., Turan T.N., Virani S.S., Wong N.D., Woo D., Turner M.B., American Heart Association Statistics C. & Stroke Statistics S. (2014) Heart disease and stroke statistics--2014 update: a report from the American Heart Association. Circulation, 129(3), e28-e292.
Godwin K.M., Ostwald S.K., Cron S.G. & Wasserman J. (2013a) Long-term health-related quality of life of stroke survivors and their spousal caregivers. Journal of Neuroscience Nursing, 45(3), 147-154. 74
Godwin K.M., Swank P.R., Vaeth P. & Ostwald S.K. (2013b) The longitudinal and dyadic effects of mutuality on perceived stress for stroke survivors and their spousal caregivers. Aging and Mental Health, 17(4), 423-431.
Goldstein L.B., Samsa G.P., Matchar D.B. & Horner R.D. (2004) Charlson Index comorbidity adjustment for ischemic stroke outcome studies. Stroke, 35(8), 19411945.
Grant M., Sun V., Fujinami R., Sidhu R., Otis-Green S., Juarez G., Klein L. & Ferrell B. (2013) Family caregiver burden, skills preparedness, and quality of life in non-small cell lung cancer. Oncology Nursing Forum, 40(4), 337-346.
Green T.L. & King K.M. (2010) Functional and psychosocial outcomes 1 year after mild stroke. J Stroke Cerebrovasc Dis, 19(1), 10-16.
Icks A., Claessen H., Morbach S., Glaeske G. & Hoffmann F. (2012) Timedependent impact of diabetes on mortality in patients with stroke: survival up to 5 years in a health insurance population cohort in Germany. Diabetes Care, 35(9), 1868-1875.
Klinedinst N.J., Gebhardt M.C., Aycock D.M., Nichols-Larsen D.S., Uswatte G., Wolf S.L. & Clark P.C. (2009) Caregiver characteristics predict stroke survivor quality of life at 4 months and 1 year. Research in Nursing and Health, 32(6), 592605.
Korpershoek C., van der Bijl J. & Hafsteinsdottir T.B. (2011) Self-efficacy and its influence on recovery of patients with stroke: a systematic review. Journal of Advanced Nursing, 67(9), 1876-1894. 75
Kouwenhoven S.E., Kirkevold M., Engedal K. & Kim H.S. (2011) Depression in acute stroke: prevalence, dominant symptoms and associated factors. A systematic literature review. Disability and Rehabilitation, 33(7), 539-556.
Kronish I.M., Edmondson D., Goldfinger J.Z., Fei K. & Horowitz C.R. (2012) Posttraumatic stress disorder and adherence to medications in survivors of strokes and transient ischemic attacks. Stroke, 43(8), 2192-2197.
Kruithof W.J., van Mierlo M.L., Visser-Meily J.M., van Heugten C.M. & Post M.W. (2013) Associations between social support and stroke survivors' healthrelated quality of life--a systematic review. Patient Education and Counseling, 93(2), 169-176.
Lazarus R.S. & Folkman S.,(1984) Stress, appraisal, and coping, New Jork.
Lee H.Y., Hwang J.S., Jeng J.S. & Wang J.D. (2010) Quality-adjusted life expectancy (QALE) and loss of QALE for patients with ischemic stroke and intracerebral hemorrhage: a 13-year follow-up. Stroke, 41(4), 739-744.
Lee J.H., Kim S.B., Lee K.W. & Lee J.Y. (2012) The effect of prolonged inpatient rehabilitation therapy in subacute stroke patients. Ann Rehabil Med, 36(1), 16-21.
Levy J.A., Landerman L.R. & Davis L.L. (2011) Advances in mediation analysis can facilitate nursing research. Nursing Research, 60(5), 333-339.
Luchetti L., Uhunmwangho E., Dordoni G., Lorido A., Barbieri S., Bolognesi A.G., Gobbi G. & Franchi F. (2009) The subjective feeling of burden in caregivers of elderly with dementia: how to intervene? Archives of Gerontology and Geriatrics, 49 Suppl 1, 153-161. 76
Lurbe-Puerto K., Leandro M.E. & Baumann M. (2012) Experiences of caregiving, satisfaction of life, and social repercussions among family caregivers, two years post-stroke. Social Work in Health Care, 51(8), 725-742.
Mahoney F.I. & Barthel D.W. (1965) Functional Evaluation: The Barthel Index. Maryland State Medical Journal, 14, 61-65.
McCubbin H.I., Sussman M.B. & Patterson J.M.,(1983) Social stress and the family : advances and developments in family stress theory and research. Haworth Press, New York.
McPherson C.J., Wilson K.G., Chyurlia L. & Leclerc C. (2011) The caregiving relationship and quality of life among partners of stroke survivors: a crosssectional study. Health and Quality of Life Outcomes, 9(1), 29. doi: 10.1186/14777525-9-29.
Nir Z., Greenberger C. & Bachner Y.G. (2009) Profile, burden, and quality of life of Israeli stroke survivor caregivers: a longitudinal study. Journal of Neuroscience Nursing, 41(2), 92-105.
Novak M. & Guest C. (1989) Application of a multidimensional caregiver burden inventory. Gerontologist, 29(6), 798-803.
Ostwald S.K., Bernal M.P., Cron S.G. & Godwin K.M. (2009a) Stress experienced by stroke survivors and spousal caregivers during the first year after discharge from inpatient rehabilitation. Topics in Stroke Rehabilitation, 16(2), 93-104.
77
Ostwald S.K., Godwin K.M. & Cron S.G. (2009b) Predictors of life satisfaction in stroke
survivors
and
spousal
caregivers
after
inpatient
rehabilitation.
Rehabilitation Nursing, 34(4), 160-167.
Owolabi M.O. (2010) What are the consistent predictors of generic and specific post-stroke health-related quality of life? Cerebrovascular Diseases, 29(2), 105-110.
Panzini R.G., Maganha C., Rocha N.S., Bandeira D.R. & Fleck M.P. (2011) Brazilian validation of the Quality of Life Instrument/spirituality, religion and personal beliefs. Revista de Saude Publica, 45(1), 153-165.
Perrin P.B., Heesacker M., Hinojosa M.S., Uthe C.E. & Rittman M.R. (2009) Identifying at-risk, ethnically diverse stroke caregivers for counseling: a longitudinal study of mental health. Rehabil Psychol, 54(2), 138-149.
Raju R.S., Sarma P.S. & Pandian J.D. (2010) Psychosocial problems, quality of life, and functional independence among Indian stroke survivors. Stroke, 41(12), 29322937.
Ridker P.M., Hennekens C.H., Buring J.E. & Rifai N. (2000) C-reactive protein and other markers of inflammation in the prediction of cardiovascular disease in women. New England Journal of Medicine, 342(12), 836-843.
Rouillard S., De Weerdt W., De Wit L. & Jelsma J. (2012) Functioning at 6 months post stroke following discharge from inpatient rehabilitation. South African Medical Journal, 102(6), 545-548.
78
Sagen U., Finset A., Moum T., Morland T., Vik T.G., Nagy T. & Dammen T. (2010) Early detection of patients at risk for anxiety, depression and apathy after stroke. General Hospital Psychiatry, 32(1), 80-85.
Shyu Y.I., Maa S.H., Chen S.T. & Chen M.C. (2009) Quality of life among older stroke patients in Taiwan during the first year after discharge. J Clin Nurs, 18(16), 2320-2328.
Simeone S., Savini S., Cohen M.Z., Alvaro R. & Vellone E. (2014) The experience of
stroke
survivors
three
months
after
being
discharged
home:
A
phenomenological investigation. European Journal of Cardiovascular Nursing. doi: 10.1177/1474515114522886.
Sreedharan S.E., Unnikrishnan J.P., Amal M.G., Shibi B.S., Sarma S. & Sylaja P.N. (2013) Employment status, social function decline and caregiver burden among stroke survivors. A South Indian study. Journal of the Neurological Sciences, 332(12), 97-101.
Tang W.K., Lau C.G., Mok V., Ungvari G.S. & Wong K.S. (2013) Impact of anxiety on health-related quality of life after stroke: a cross-sectional study. Archives of Physical Medicine and Rehabilitation, 94(12), 2535-2541.
Tanji H., Anderson K.E., Gruber-Baldini A.L., Fishman P.S., Reich S.G., Weiner W.J. & Shulman L.M. (2008) Mutuality of the marital relationship in Parkinson's disease. Movement Disorders, 23(13), 1843-1849.
79
Taylor-Piliae R.E., Hepworth J.T. & Coull B.M. (2013) Predictors of depressive symptoms among community-dwelling stroke survivors. Journal of Cardiovascular Nursing, 28(5), 460-467. doi: 10.1097/JCN.0b013e318258ad57.
Taylor R.M., Gibson F. & Franck L.S. (2008) A concept analysis of health-related quality of life in young people with chronic illness. Journal of Clinical Nursing, 17(14), 1823-1833.
Tessier A., Finch L., Daskalopoulou S.S. & Mayo N.E. (2008) Validation of the Charlson Comorbidity Index for predicting functional outcome of stroke. Archives of Physical Medicine and Rehabilitation, 89(7), 1276-1283.
Van Puymbroeck M., Hinojosa M.S. & Rittman M.R. (2008) Influence of sense of coherence on caregiver burden and depressive symptoms at 12 months poststroke. Top Stroke Rehabil, 15(3), 272-282.
Vellone E., Savini S., Barbato N., Carovillano G., Caramia M. & Alvaro R. (2010) Quality of life in stroke survivors: first results from the reliability and validity of the Italian version of the Stroke Impact Scale 3.0. Annali di Igiene, 22(5), 469-479.
Vellone E., Savini S., Fida R., Dickson V., D’Eramo Melkus G., Carod-Artal F., Rocco G. & Alvaro R. (2014) Psychometric Evaluation of the Stroke Impact Scale 3.0. Journal of Cardiovascular Nursing.
Vincent C., Desrosiers J., Landreville P., Demers L. & group B. (2009) Burden of caregivers of people with stroke: evolution and predictors. Cerebrovascular Diseases, 27(5), 456-464.
80
Visser-Meily A., Post M., Schepers V. & Lindeman E. (2005) Spouses' quality of life 1 year after stroke: prediction at the start of clinical rehabilitation. Cerebrovascular Diseases, 20(6), 443-448.
Visser-Meily A., Post M., van de Port I., van Heugten C. & van den Bos T. (2008) Psychosocial functioning of spouses in the chronic phase after stroke: improvement or deterioration between 1 and 3 years after stroke? Patient Education and Counseling, 73(1), 153-158.
Wagner L.M., Phillips V.L., Hunsaker A.E. & Forducey P.G. (2009) Falls among community-residing stroke survivors following inpatient rehabilitation: a descriptive analysis of longitudinal data. BMC Geriatrics, 9, 46. doi: 10.1186/14712318-9-46.
Weerdesteyn V., de Niet M., van Duijnhoven H.J. & Geurts A.C. (2008) Falls in individuals with stroke. Journal of Rehabilitation Research and Development, 45(8), 1195-1213.
White C.L., Mayo N., Hanley J.A. & Wood-Dauphinee S. (2003) Evolution of the caregiving experience in the initial 2 years following stroke. Research in Nursing and Health, 26(3), 177-189.
WHOQOL-SRPB Group. (2006) A cross-cultural study of spirituality, religion, and personal beliefs as components of quality of life. Social Science and Medicine, 62(6), 1486-1497.
WHOQOL Group. (1998) Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological Medicine, 28(3), 551-558. 81
Yu Y., Hu J., Efird J.T. & McCoy T.P. (2013) Social support, coping strategies and health-related quality of life among primary caregivers of stroke survivors in China. Journal of Clinical Nursing, 22(15-16), 2160-2171.
Zigmond A.S. & Snaith R.P. (1983) The hospital anxiety and depression scale. Acta Psychiatr Scand, 67(6), 361-370.
Zimet G.D., Powell S.S., Farley G.K., Werkman S. & Berkoff K.A. (1990) Psychometric characteristics of the Multidimensional Scale of Perceived Social Support. Journal of Personality Assessment, 55(3-4), 610-617.
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CHAPTER 3 THE EXPERIENCE OF STROKE SURVIVORS THREE MONTHS AFTER BEING DISCHARGED HOME: A PHENOMENOLOGICAL INVESTIGATION
This chapter is published in the following source:
Simeone, S., Savini, S., Cohen, M.Z., Alvaro, R. and Vellone E. (2014). The experience of stroke survivors three months after being discharged home: A phenomenological investigation. Eur J Cardiovasc Nurs. 2014 Feb 2. [Epub ahead of print]
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Abstract Background. Stroke is the leading cause of disability in the adults, and has a significant impact on individuals, families, and society. Returning home after a stroke represents a challenging experience for patients who struggle to adapt to their new life conditions. Although many studies have been conducted on stroke survivors, few studies have focused on the lived experience of patients at three months after they came home after rehabilitation. Aims. The aim of this study was to describe the experience of stroke survivors three months after being discharged home from rehabilitation hospitals. Method. A phenomenological design was used to conduct the study. Participants were enrolled from rehabilitation hospitals in the cities of Rome and Naples. Interviews were conducted at the patients’ house and data were analyzed with the approach by Cohen et al. (2000). Findings. Fifteen stroke survivors were interviewed (mean age 70 years; 12 males). Five themes emerged from the phenomenological analysis of the interviews and the fieldnotes: deeply changed life, vivid memory of the acute phase of the stroke, slowed lives, relief after recovering from stroke, being a burden for family members. Conclusions. The results of this study give an overview of the experience of stroke survivors three months after being discharged home. From a clinical perspective, healthcare providers need to provide more interventions to help survivors to cope better with life changes and encourage them to adapt to daily life limitations caused by stroke. Also, health-care providers should improve support provided to family members of stroke patients. Keywords: Stroke, Stroke survivors, Experiences, Phenomenology
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Introduction
Stroke is the second leading cause of death in the Western world, preceded only by heart disease and cancer(Donnan, Fisher et al. 2008). About 5.5 million people die from stroke every year worldwide (World_Health_Organization 2013). The prevalence and the incidence of stroke increase exponentially with age, peaking in people older than age 85, with 75% of strokes occurring in those over age 65 (Di Carlo, Baldereschi et al. 2003; European Registers of Stroke, Heuschmann et al. 2009). In Europe and in Italy the prevalence of stroke ranges from 4.6 to 7.3 for 1000, and the annual incidence ranges between 7.5 and 10.1 per 1000 for people over age 65(Di Carlo, Baldereschi et al. 2003).
Stroke is the leading cause of disability in the adult population: one year after a stroke about one third of patients are entirely dependent due to high levels of residual disability(SPREAD 2007). This results in a significant impact on individuals, families, and health-care costs (Fattore, Torbica et al. 2012; Zorowitz, Gillard et al. 2013).
Returning home after a stroke is a challenging experience for patients who struggle to adapt to their new life conditions because of physical disabilities, stress, depression, cognitive impairment and reduced quality of life (Carod-Artal, Egido et al. 2000; CarodArtal, Trizotto et al. 2009; Cerniauskaite, Quintas et al. 2012). Although many studies have been conducted on stroke survivors, few studies have focused on the lived experience of patients when they return home (Ellis-Hill, Payne et al. 2000; Hilton 2002; Rittman, Faircloth et al. 2004; Dalvandi, Heikkila et al. 2010; Donnellan, Martins et al. 2013; Pallesen 2013). In addition, although many advancements have been made in stroke rehabilitation 85
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that may have an impact on how stroke is perceived by survivors (Homberg 2010; Rosati 2010; Knecht, Hesse et al. 2011), few studies have been conducted in the last decade on this perception (Rittman, Faircloth et al. 2004; Dalvandi, Heikkila et al. 2010; Donnellan, Martins et al. 2013). Existing research has been conducted with several qualitative methodologies and sometimes focused on specific experience of patients, for example, transition from hospital to home and the consequences of stroke (Rittman, Faircloth et al. 2004), the experiences related to basic care needs during in-hospital stay (e.g. elimination, personal hygiene, eating)(Kitson, Dow et al. 2013), the experience of eating difficulties(Klinke, Hafsteinsdottir et al. 2013), apraxia (Arntzen and Elstad 2013), depression (Kouwenhoven, Kirkevold et al. 2012), returning to work (Medin, Barajas et al. 2006), and sometimes were gender specific, enrolling only female people (Hilton 2002). In addition, investigators (Ellis-Hill, Payne et al. 2000; Dalvandi, Heikkila et al. 2010; Pallesen 2013) have included patients who differed in term of time from their discharge home, which may limit the understanding of stroke survivors’ experience. In fact, stroke survivors physical and psychological status changes over time (Pallesen 2013) and this might influence the meaning patients attribute to their condition. Rachpukdee et al (Rachpukdee, Howteerakul et al. 2013) recently found that predictors of quality of life after stroke change between one month and three months from when patients are discharged home. In fact soon after the stroke, generally within the first month, patients are still focused on physical recovery and do not pay attention to other important aspects of life such as, for example, family relationships, that emerge generally three month after patients are discharged home (Rachpukdee, Howteerakul et al. 2013). A precise and 86
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consistent description of the lived experience of stroke survivors at this specific time (three months after stroke survivors are discharged home) is lacking in the literature but may be useful to be known in order to provide better care in patients who experience changing conditions over time. Therefore, the aim of this study was to describe the experience of stroke survivors three months after being discharged home from a rehabilitation hospital.
Methods Design, participants and setting A phenomenological design was used to conduct the study (Cohen, Kahn et al. 2000). This method combines features of descriptive (Husserlian) and interpretive phenomenology (Gadamerian) and has been used in several studies (Vellone, Piras et al. 2008; Cohen, Pace et al. 2009; Cohen, Torres-Vigil et al. 2012; Vellone, Piras et al. 2012). The phenomenological method was chosen to conduct this study because it allows a deeper understanding of peoples’ experience as well as an investigation of the meaning people attribute to an experience. In fact, according to the phenomenological approach that guided this study (Cohen, Kahn et al. 2000) “Understanding patients’ experiences may guide nurses to interact in ways that may differ from people who lack that understanding”, and “The meanings that patients attribute to their experiences help create the needs they have and how these needs can best be met” (p. 4). Also, we choose the phenomenological method to conduct this study because, as discussed by Goldberg (Goldberg 2011), the recovery from a stroke is rooted in patients’ experience, including patients’ perceptions and expectations, which have a deep phenomenological connection.
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Participants interviewed in this study were selected from those involved in a larger ongoing Italian multisite longitudinal study aimed at studying quality of life in patients after stroke. In the longitudinal study patients are enrolled at discharge from rehabilitation hospitals and then are followed-up for one year. Quantitative data were collected regarding patients’ quality of life when patients were discharged and every three months. To be enrolled in the multisite longitudinal study participants met the following inclusion criteria: having a first stroke; being discharged from a rehabilitation hospital three months before; having no comorbidity with other motor disorders (e.g., Amyotrophic Lateral Sclerosis, Parkinson disease, multiple sclerosis, neuropathies); no aphasia, clinical dementia, cancer or severe organ failure, such as renal failure or heart failure. Participants of this phenomenological study were consecutively selected from the 80 patients surveyed at three months from discharge in the longitudinal study. Interviews with those who agreed to participate in this phenomenological study continued until data reached saturation with 15 patients: 13 patients were from two rehabilitation hospitals in Rome and 2 patients were from other two rehabilitation hospitals in Naples.
Data collection and Analysis Before data collection each investigator involved in the study performed “bracketing” that requires each researcher to write all pre-understandings, prejudices and assumptions about the phenomenon (Cohen, Kahn et al. 2000). In Cohen et al.’s method (Cohen, Kahn et al. 2000) this is called the Critical Reflection Technique and helps investigators to be rigorous in analysis. After bracketing, all interviews were performed by one of the investigators (SS). This investigator contacted stroke survivors enrolled in the 88
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longitudinal study three months after their discharge home and made an appointment for the interview. Interviews were all performed at patients’ house. During interviews, the researcher asked participants the open question, “Please describe your experience during the past three months since you were discharged home”. The investigator had a welcoming attitude (Vellone, Piras et al. 2008; Vellone, Piras et al. 2012)
during the
interviews, i.e. expressing cordiality and reassurance, not judging patients’ storytelling and being serene and smiling to facilitate participants’ describing their experience. During and after the interview the investigator took field notes on his own reflections, the setting, environment and patients' body language. When participants seemed not to have anything further to say, the researcher asked them if they had anything more to add. If they did not, the interview ended. Data saturation was achieved after 15 interviews. All interviews lasted from 30 minutes to one hour and were all digitally audio recorded. The interview was pre-tested with 2 patients whose data were not included in this analysis. After each interview the investigator administered the Barthel Index (Mahoney and Barthel 1965) which is a tool to evaluate patient’s autonomy in performing activities of daily living such as mobility, feeding, bathing, toilet using, grooming, transfer, dressing, climbing stairs, bowel and bladder control. The Barthel Index has possible score from 0 to 100 with higher scores meaning better independence, and has been widely used in stroke population (Hung, Hsieh et al. 2013; Joseph and Rhoda 2013).
All interviews were transcribed verbatim and the accuracy between the digital audio recordings and the transcripts was checked. The transcriptions were also translated into English to involve the foreign co-investigator. This approach has been successfully 89
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used in prior research (Vellone, Piras et al. 2008; Vellone, Piras et al. 2012). Data analysis and the extraction of themes were performed by each investigator. To establish theme trustworthiness a comparison of extracted themes was performed and discussed among all investigators in order to reach agreement; discussion with the foreign investigator was done by e-mail. Trustworthiness was also enhanced by asking patients to confirm extracted themes. After the themes were confirmed by patients we wrote this scientific report.
Ethical considerations Ethical approval was obtained before data collection in each Center where participants were enrolled. Patients also signed an informed consent form after the study was explained to them and before the interview. Participants were assured their data would contain no identifying information, and that they had the right to withdraw from the study at any time.
Results Participants were 70 years old on average (age range 34-85). Twelve stroke survivors were male, three were female; 13 patients lived in Rome, 2 lived in Naples. Level of education was low with 11 of the participants educated only at elementary or middle school level. Eight participants were married and seven were widowed. All, except one patient, were retired at the time of the interview. Most of the strokes were ischemic, nine patients had a stroke in the right hemisphere, six patients in the left. Autonomy measured 90
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by the Barthel Index (Mahoney and Barthel 1965) was 77/100 on average which means that patient were quite functionally independent. With the exception of two, all patients lived with family (Table 1).
Five themes emerged from the analysis of the interviews and the fieldnotes: deeply changed life, vivid memory of the acute phase of the stroke, slowed lives, relief after recovering from stroke, being a burden for family members. Deeply changed life The most frequent theme that emerged from participants’ descriptions of their experience was "deeply changed life". Not only had life changed for survivors but it was deeply changed. Participants were aware that their stroke had forever changed their lives both physically and psychologically. Stroke sequels had changed their life patterns: life now appeared less secure and more precarious. One participant reported (12 FM):"Stroke is an event that marks you, that changes your life. It seems that your life becomes precarious. 91
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You become aware that nothing is safe”. Another participant also reported (07 RB): "Well, the stroke is an event that marks you, that changes your life. All seems reduced to a kind of precarious sensation. Shortly, you realize that nothing is certain anymore, no one has certainty. But when you have been affected by stroke you realize that in a few minutes you can leave everything and everyone”. Another participant (09 GG) added: “My life has changed, I am no longer able to stand alone: before [the stroke] I was able to shave by myself, now I need help, as well as to eat, go for a walk”. This patients lived alone, but received care from his son’s family who lived downstairs in the same house. Participants noted that even their homes needed to be changed, to be adapted to their disability. A participant explained (01 NL): “When I came back home my family had to rearrange the house for me to facilitate my movements with the wheelchair”.
Vivid memory of the acute phase of the stroke Many patients had very strong and powerful memories of the acute phase of the stroke event. During the interview they vividly described the physical sensations they felt as the stroke began and during the following days. Patients clearly remembered the feeling of fear that something strange was happening. And this fear was still present in participants. A patient described (02 PL):“At the minimum physical effort the mind runs always and remember those moments, that feeling of helplessness, of death. Since then [before stroke] I used to have a much quieter life, but not anymore. Many times my mind goes to those moments of fear of dying, fear of being immobile. Yes, life goes on but your mind is marked by the stroke”. When he talked about this experience, this participant’s facial expression showed his fear. Another 92
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participant (13 VG) reported: “My mind often remembers when the stroke happened. I felt fear, fear of dying”.
Slowed lives Many participants noted that their stroke had slowed down their lives: they related this to body movements, to cognitive and decision making processes. A participant (15 AG) noted: "I can move both hands but one [the unaffected hand] is at 100% and the other one is at 90%. This other hand is like it gets tired more quickly. So, I feel slowed down. Also when I walk I feel slowed down". During this report the patient showed the movement of both arms to let the interviewer see the differences between the two arms. Another participant (04 CR) said: "I do almost all the same things I used to do before the stroke, but slowly. I walk slower. Sometimes it also seems to me that I speak slower: I think words but they come out slowly.” Also another participant (07 RB) reported: “I have no major limitations, although I note my uncertainty in doing things, as if I am in slow motion, I am slow to walk and sometimes even in articulating my thoughts”.
Relief after recovering from stroke During the interviews patients very often reported that they felt relieved as they recovered and as they gained more physical independence. This theme was common among participants, even those who still had some limitations. The feelings of relief were associated with their physical and cognitive recovery even after minimal recovery. One survivor told us (03 MB): “Fortunately my conditions were not changed for a long time. Now I 93
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have the same life that I had before. I'm healthy now, as you can see, I can move my hand, arm, foot, leg”. In showing the possible movements of the limbs, he smiled, showing his happiness in observing the movements that he could do. This description is consistent with this patient’s Barthel Index score since with a score of 70 he could move his upper and lower limbs but was not completely independent to move from his bed to a chair or to climb stairs. Another participant (07 RB) reported: “The important thing is, to me, that now everything is back to normal. Now I am able to walk, to go to the bathroom alone. At first it was a tragedy: at the beginning the catheter, then the diaper. Now, thanks to God, those things are the past”. Another participant explained (10 MN): “I had the fear that I would become useless. So I thought it was better to be thrown out of the window or die soon. But now I am healed, luckily, and everything is better than before. When describing this change, this participant showed a serene facial expression. Another participant said (13 VG): “Luckily I have had a quick recovery, a good recovery. There are still some steps forward that I need to make, but I am optimist”.
Being a burden to family members Another theme extracted from the interviews was the feeling of being a burden to family members. In fact, patients were aware of, and felt guilty for, the discomfort they caused to their family. This was heightened because none of them received support from the National Health Service at home. One patient even felt guilty about her daughter’s divorce. He said (12 FM):“I see the life of my family members now revolves around my life. You see the lives of people around you being upset because of you. It is true that at a certain age children 94
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have to take care of their parents, but this disrupts their lives. They have two jobs, their job and me”. This patient appeared heart broken by this situation and cried during the interview. Another patient (05 CA) said: "Do you see the condition in which I put my son? I forced my son to bounce among work, home, his family, and me. My son seems like a yo-yo attached to the rope running back and forth, poor man! Now he has started to become nervous about silly things". SMD (08) also said: “I'm a burden for them, I need help for almost everything and I see that my life has a huge impact on their lives [family members]”.
Discussion
The aim of this study was to describe the experience of stroke survivors three months after being discharged home in order to improve our understanding of what it means to stroke survivors to go back to their usual life. Themes that emerged from the phenomenological analysis showed that patients experienced a deep change in their lives, had a vivid memory of the acute phase of the stroke, felt that their lives had been slowed down, felt relieved for the recovery but also felt they were a burden for their family members. Because prior studies have not been specifically focused on the whole lived experience of stroke survivors during the first three months after being discharged home, these findings add a new dimension to the literature. Understanding stroke survivors’ experience during this time is important since generally three month after being at home patients “first” have a comprehensive experience of the stroke. Prior to this time, they are more likely to be focused only on the meaning of physical disability, and only later can
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they also focus on the meaning of other aspects of daily life and family interactions (Rachpukdee, Howteerakul et al. 2013).
Other authors also have investigated the experiences of stroke survivors with qualitative methods but we found only two published studies in the last 11 years which used a phenomenological perspective to uncover the meaning of the “whole” experience of stroke (Hilton 2002; Pallesen 2013). The first study (Hilton 2002) was conducted with five female survivors one year after stroke and the investigators found the overarching theme of transformations which was interwoven with six other themes, which were dawning awareness of self as disabled, life and suffering through inexorable losses, quest for self, adaptation to change, existential reestablishment of self, reconciliation and reengagement. These themes are similar to the experiences our stroke survivors described in the themes deeply changed life and slowed lives. Similarities are interesting despite difference in the two studies. Hilton’s study (Hilton 2002) was conducted 11 years ago and enrolled only women who survived from stroke one year before. In the other phenomenological study (Pallesen 2013) themes were: body experiences, coping, and altered life. The results of this study are also somewhat similar to our findings in relation to the themes deeply changed life and slowed lives, since changes and slowness in our participants sometimes referred to changes of the body. However changes and slowness in other aspects of life were discussed. Also, in Pallesen’s study (Pallesen 2013), stroke survivors were enrolled 5 years after their stroke and themes might reflect the chronic results of the stroke disabilities rather than a “first” or initial experience related to the stroke. Unlike to the findings of another earlier phenomenological study (Gadow 1982) 96
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none of our participants reported changes in embodiment: this may be due to the high level of physical functioning of our stroke survivors.
In our interviews, survivors described vivid memories of the acute phase of their stroke and the emotional consequences (fear of dying, fear of being immobile). Other researchers (Ellis-Hill, Payne et al. 2000; Bakas, Austin et al. 2002) have reported similar results and also reported that patients were afraid of another stroke. In contrast, in our study participants reported the fear they felt during the acute phase of the stroke but never mentioned fear of having another stroke. This might result from our participants, even though at risk for another stroke (Armario and de la Sierra 2009; Go, Mozaffarian et al. 2013), not being aware of that risk. Perhaps this also relates to the early time at which our participants were interviewed. The need for educational interventions focused on preventing future strokes may be important.
Another theme from the interviews was relief after recovering from stroke. This theme has not been reported in prior studies and might reflect that our participants (who had a mean Barthel Index score of 77/100) were in general quite autonomous even though they were in need of help with some activities of daily living. It was interesting to note that participant
09 GG experienced a discrepancy between his reported experience,
expressing clear disability in activities of daily living, and his Barthel Index score, which was 100/100. This was not completely a surprise since the ceiling effect of the Barthel Index is reported in the literature (Sarker, Rudd et al. 2012) and so patients may have a high score on this measure even though they are not completely independent. However, in 97
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general, we noticed that even little improvements in rehabilitation yielded the feeling and perception of having reached a good performance. In addition, it emphasizes the need for health care providers to understand the patients’ view of their abilities and not focus only on “objective” measures.
The last theme from these interviews was being a burden to family members. Stroke has a significant impact on the QOL in stroke survivors’ family members (Ostwald, Swank et al. 2008; Dalvandi, Heikkila et al. 2010) and evidences also show that caregivers’ wellbeing affects stroke survivors’ recovery (Lui, Ross et al. 2005). A recent study (Chung, Bakas et al. 2013) found that caregivers' self-esteem, optimism and perceived control influenced depression in stroke survivors. Therefore, health care providers should consider the psychological status of stroke caregivers. Dalvandi et al (Dalvandi, Heikkila et al. 2010) reported the theme of “life disintegration” where stroke survivors felt as if they were a burden for others and noted that because of the consequences of their stroke they felt to have destroyed the lives of people close to them. However, it is important to note that this theme may reflect that participants of our study did not received any support from the National Health Service and so most of the care they needed was the responsibility of their family members.
Limitations
Our study has a number of limitations. First, our participants were mostly males (12 of 15) and this might have influenced the reported experiences. For example, literature 98
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reports that female stroke survivors have a worse QOL than men (Carod-Artal, Egido et al. 2000; Roth, Haley et al. 2011): in our study if more females had been involved, more “negative” themes related to the experience of stroke might have been seen, and perhaps the theme related to relief might not have been so prominent. However, women in our study reported relief linked it with their recovery, so perhaps recovery is more important than gender. Research with a larger group of men and women would be useful to clarify this. Another limitation is that our participants were mostly independent and their experience would likely have been different if they were more dependent. Including more participants who had severe limitations, and perhaps even focusing exclusively on these more debilitated persons, would be useful to understand their needs.
Conclusion
This study has provided an overview of the lived experience of stroke survivors three months after being discharged home, and to our knowledge no prior studies have explored the experience of stroke survivors in this specific time. Shyu et al (Shyu, Maa et al. 2009) emphasized the importance of intervening with stroke survivors even after their physical rehabilitation and our findings might contribute to refining interventions aimed at improving a comprehensive recovery after patients are discharged home.
Results of this study allowed us to uncover the meaning that patients give to the first three months after they return home after a stroke. From a clinical perspective, our findings emphasize the importance of continuing physical, psychological, and spiritual recovery even when patients return home. In fact our participants reported feelings that 99
100
might affect their recovery such as how they had deeply changed lives, vivid memories of the stroke event, and concerns about being a burden on their families. These findings might be useful for nurses and other health-care professionals both in the acute phase of the stroke, in rehabilitation, and particularly in home care settings. In fact, Vincent et al. (Vincent, Deaudelin et al. 2007) showed a gap between the health care professionals’ rehabilitation goals and those of stroke survivors: while professionals are more oriented to the physical and cognitive rehabilitation, patients are more focused on the return to their normal life that will result from the rehabilitation. Knowing how patients experience their return to normal life may help professionals provide stroke survivor-centered care. Quantitative studies have found several predictors of patient’s quality of life after a stroke (Allan, Rowan et al. 2013; van Bragt, van Ginneken et al. 2013) and have well described as quality of life change over time (Teoh, Sims et al. 2009; Rachpukdee, Howteerakul et al. 2012). Despite this, 40% of stroke survivors are not satisfied with the care they received(Tistad,
Tham
et
al.
2012).
Fraas
(Fraas
2011)
has
emphasized
that
phenomenological studies can offer a comprehensive and holistic approach to study stroke recovery, can facilitate survivors (and caregivers as well) recovery by highlighting factors that can promote successful recovery, and can guide clinicians to develop a more effective and holistic treatment, which in turn can improve active survivors’ coping style based on their expectations.
Our study explored the lived experience of stroke survivors three months after being discharged home. Future research is needed to investigate the experience of patients over time because the recovery process from stroke is dynamic and unstable 100
101
(Dixon, Thornton et al. 2007; Patel, McKevitt et al. 2007) . Future research should also take into consideration the experience of caregivers since they have an important influence on stroke survivors (Godwin, Swank et al. 2013).
Implications for Practice
Providers should focus more on stroke survivors’ expectations about stroke recovery
Providers should help survivors to cope with life changes after stroke
Providers should guide survivors on how to adapt their daily life to limitations resulting from the stroke
Providers should educate survivors on how to prevent another stroke
Providers should improve support to families of stroke patients
Funding
This study was funded by the Center of Excellence for Nursing Scholarship, Rome, Italy.
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References
Allan, L. M., E. N. Rowan, et al. (2013). "Long-term incidence of depression and predictors of depressive symptoms in older stroke survivors." Br J Psychiatry 203: 453-460.
Armario, P. and A. de la Sierra (2009). "Antihypertensive treatment and stroke prevention: are angiotensin receptor blockers superior to other antihypertensive agents?" Ther Adv Cardiovasc Dis 3(3): 197-204.
Arntzen, C. and I. Elstad (2013). "The bodily experience of apraxia in everyday activities: a phenomenological study." Disabil Rehabil 35(1): 63-72.
Bakas, T., J. K. Austin, et al. (2002). "Needs, concerns, strategies, and advice of stroke caregivers the first 6 months after discharge." J Neurosci Nurs 34(5): 242-251.
Carod-Artal, F. J., D. S. Trizotto, et al. (2009). "Determinants of quality of life in Brazilian stroke survivors." J Neurol Sci 284(1-2): 63-68.
Carod-Artal, J., J. A. Egido, et al. (2000). "Quality of life among stroke survivors evaluated 1 year after stroke: experience of a stroke unit." Stroke 31(12): 2995-3000.
Cerniauskaite, M., R. Quintas, et al. (2012). "Quality-of-life and disability in patients with stroke." Am J Phys Med Rehabil 91(13 Suppl 1): S39-47.
Chung, M., T. Bakas, et al. (2013). Effects of Self-Esteem, Optimism, and Perceived Control on Depression: Testing Dyadic Dynamics in Stroke Survivor-Spouse Dyads. International stroke conference, Honolulu, Hawaii.
Cohen, M. Z., D. Kahn, et al. (2000). Hermeneutic Phenomenological Research: A Practical Guide for Nurse Researchers. Thousand Oaks, CA, Sage. 102
103
Cohen, M. Z., E. A. Pace, et al. (2009). "Delirium in advanced cancer leading to distress in patients and family caregivers." J Palliat Care 25(3): 164-171.
Cohen, M. Z., I. Torres-Vigil, et al. (2012). "The meaning of parenteral hydration to family caregivers and patients with advanced cancer receiving hospice care." J Pain Symptom Manage 43(5): 855-865.
Dalvandi, A., K. Heikkila, et al. (2010). "Life experiences after stroke among Iranian stroke survivors." Int Nurs Rev 57(2): 247-253.
Di Carlo, A., M. Baldereschi, et al. (2003). "Stroke in an elderly population: incidence and impact on survival and daily function. The Italian Longitudinal Study on Aging." Cerebrovasc Dis 16(2): 141-150.
Dixon, G., E. W. Thornton, et al. (2007). "Perceptions of self-efficacy and rehabilitation among neurologically disabled adults." Clin Rehabil 21(3): 230-240.
Donnan, G. A., M. Fisher, et al. (2008). "Stroke." Lancet 371(9624): 1612-1623.
Donnellan, C., A. Martins, et al. (2013). "Mapping patients' experiences after stroke onto a patient-focused intervention framework." Disabil Rehabil 35(6): 483-491.
Ellis-Hill, C. S., S. Payne, et al. (2000). "Self-body split: issues of identity in physical recovery following a stroke." Disabil Rehabil 22(16): 725-733.
European Registers of Stroke, I., P. U. Heuschmann, et al. (2009). "Incidence of stroke in Europe at the beginning of the 21st century." Stroke 40(5): 1557-1563.
Fattore, G., A. Torbica, et al. (2012). "The social and economic burden of stroke survivors in Italy: a prospective, incidence-based, multi-centre cost of illness study." BMC Neurol 12: 137. 103
104
Fraas, M. R. (2011). "Enhancing quality of life for survivors of stroke through phenomenology." Top Stroke Rehabil 18(1): 40-46.
Gadow, S. (1982). Body and self: a dialectic. The Humanity of the Ill: Phenomenological Perspectives. V. Kestenbaum. Knoxville, TN, University of Knoxville Press: 86-100.
Go, A. S., D. Mozaffarian, et al. (2013). "Heart disease and stroke statistics--2013 update: a report from the American Heart Association." Circulation 127(1): e6-e245.
Godwin, K. M., P. R. Swank, et al. (2013). "The longitudinal and dyadic effects of mutuality on perceived stress for stroke survivors and their spousal caregivers." Aging Ment Health 17(4): 423-431.
Goldberg, G. (2011). "Medical phenomenology and stroke rehabilitation: an introduction." Top Stroke Rehabil 18(1): 1-5.
Hilton, E. L. (2002). "The meaning of stroke in elderly women: a phenomenological investigation." J Gerontol Nurs 28(7): 19-26.
Homberg, V. (2010). "[Neurological rehabilitation]." Internist (Berl) 51(10): 1246, 1248-1253.
Hung, M. C., C. L. Hsieh, et al. (2013). "Estimation of the long-term care needs of stroke patients by integrating functional disability and survival." PLoS One 8(10): e75605.
Joseph, C. and A. Rhoda (2013). "Activity limitations and factors influencing functional outcome of patients with stroke following rehabilitation at a specialised facility in the Western Cape." Afr Health Sci 13(3): 646-654. 104
105
Kitson, A. L., C. Dow, et al. (2013). "Stroke survivors' experiences of the fundamentals of care: a qualitative analysis." Int J Nurs Stud 50(3): 392-403.
Klinke, M. E., T. B. Hafsteinsdottir, et al. (2013). "Living at home with eating difficulties following stroke: a phenomenological study of younger people's experiences." J Clin Nurs.
Knecht, S., S. Hesse, et al. (2011). "Rehabilitation after stroke." Dtsch Arztebl Int 108(36): 600-606.
Kouwenhoven, S. E., M. Kirkevold, et al. (2012). "'Living a life in shades of grey': experiencing depressive symptoms in the acute phase after stroke." J Adv Nurs 68(8): 1726-1737.
Lui, M. H., F. M. Ross, et al. (2005). "Supporting family caregivers in stroke care: a review of the evidence for problem solving." Stroke 36(11): 2514-2522.
Mahoney, F. I. and D. W. Barthel (1965). "Functional Evaluation: The Barthel Index." Md State Med J 14: 61-65.
Medin, J., J. Barajas, et al. (2006). "Stroke patients' experiences of return to work." Disabil Rehabil 28(17): 1051-1060.
Ostwald, S. K., P. R. Swank, et al. (2008). "Predictors of functional independence and stress level of stroke survivors at discharge from inpatient rehabilitation." J Cardiovasc Nurs 23(4): 371-377.
Pallesen, H. (2013). "Body, coping and self-identity. A qualitative 5-year follow-up study of stroke." Disabil Rehabil.
105
106
Patel, M. D., C. McKevitt, et al. (2007). "Clinical determinants of long-term quality of life after stroke." Age Ageing 36(3): 316-322.
Rachpukdee, S., N. Howteerakul, et al. (2012). "Quality of Life of Stroke Survivors: A 3-Month Follow-Up Study." J Stroke Cerebrovasc Dis.
Rachpukdee, S., N. Howteerakul, et al. (2013). "Quality of Life of Stroke Survivors: A 3-Month Follow-up Study." J Stroke Cerebrovasc Dis 22(7): e70-78.
Rittman, M., C. Faircloth, et al. (2004). "The experience of time in the transition from hospital to home following stroke." J Rehabil Res Dev 41(3A): 259-268.
Rosati, G. (2010). "The place of robotics in post-stroke rehabilitation." Expert Rev Med Devices 7(6): 753-758.
Roth, D. L., W. E. Haley, et al. (2011). "Race and gender differences in 1-year outcomes for community-dwelling stroke survivors with family caregivers." Stroke 42(3): 626-631.
Sarker, S. J., A. G. Rudd, et al. (2012). "Comparison of 2 extended activities of daily living scales with the Barthel Index and predictors of their outcomes: cohort study within the South London Stroke Register (SLSR)." Stroke 43(5): 1362-1369.
Shyu, Y. I., S. H. Maa, et al. (2009). "Quality of life among older stroke patients in Taiwan during the first year after discharge." J Clin Nurs 18(16): 2320-2328.
SPREAD (2007). "Ictus cerebrale: linee guida italiane di prevenzione e trattamento." Retrieved June 18th, 2013, from www.spread.it/files/SPREAD_5_2007_sintesi.pdf.
106
107
Teoh, V., J. Sims, et al. (2009). "Psychosocial predictors of quality of life in a sample of community-dwelling stroke survivors: a longitudinal study." Top Stroke Rehabil 16(2): 157-166.
Tistad, M., K. Tham, et al. (2012). "Unfulfilled rehabilitation needs and dissatisfaction with care 12 months after a stroke: an explorative observational study." BMC Neurol 12: 40.
van Bragt, P. J., B. T. van Ginneken, et al. (2013). "Predicting outcome in a postacute stroke rehabilitation programme." Int J Rehabil Res.
Vellone, E., G. Piras, et al. (2008). "Quality of life for caregivers of people with Alzheimer's disease." J Adv Nurs 61(2): 222-231.
Vellone, E., G. Piras, et al. (2012). "The experience of quality of life for caregivers of people with Alzheimer's disease living in Sardinia, Italy." J Transcult Nurs 23(1): 4655.
Vincent, C., I. Deaudelin, et al. (2007). "Rehabilitation needs for older adults with stroke living at home: perceptions of four populations." BMC Geriatr 7: 20.
World_Health_Organization (2013). "The Atlas of Heart Disease and Stroke." Retrieved
June
18th,
2013,
from
www.who.int/cardiovascular_diseases/resources/atlas/en/.
Zorowitz, R. D., P. J. Gillard, et al. (2013). "Poststroke spasticity: sequelae and burden on stroke survivors and caregivers." Neurology 80(3 Suppl 2): S45-52.
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CHAPTER 4 THE LIVED EXPERIENCES OF STROKE CAREGIVERS THREE MONTHS AFTER DISCHARGE OF PATIENTS FROM REHABILITATION HOSPITALS
This chapter is under review for publication: Simeone S, Cohen MZ, Savini S, Pucciarelli G, Juarez-Vela R, Alvaro R, Vellone E. (2015). The lived experiences of stroke caregivers three months after discharge of patients from rehabilitazion hospitals. Under Review.
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Abstract Background: Stroke is the main cause of death and disability in the adult population and has a significant impact on caregivers of stroke survivors. Caregiving of stroke patients has a long trajectory and the experiences of caregivers may change over time. Few studies have described the experience of stroke caregivers three months after discharge of patients from rehabilitation hospitals. Aim: To describe the lived experience of stroke caregivers three months after patients are discharged home from a rehabilitation hospital. Method: A phenomenological methodology was used to conduct the study. All interviews were conducted in the caregivers’ homes. Findings: Twenty-five caregivers of stroke survivors were interviewed (mean age 55.9 years; 20 females). The caregivers lived in central Italy. Seven themes emerged from the phenomenological analysis: deeply-changed life; re-appreciation of the relationship with patient and family members; increased workload; difficulties in getting support from the national health-care system; lack of preparation for caregiving; difficulties in coordinating caregiving, family and personal life; relief after patient’s recovery. Conclusion: The results of our study provide a comprehensive understanding of the lived experience of caregivers of stroke survivors during the three months following the patients’ discharge. Educational interventions should be implemented by health professionals to help caregivers in their new role with patients. Interventions should help improve caregiver preparation for caring for patients and should educate caregivers about how to use the resources of the national health system. Key words: Caregivers, stroke, phenomenology.
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Introduction Stroke is the leading cause of death in industrialized countries.(Donnan, Fisher et al. 2008; Go, Mozaffarian et al. 2014) Each year, about 5.5 million people die because of stroke worldwide. (World Health Organization 2013) The incidence and prevalence of stroke increases exponentially with increasing age, with a peak in people aged 85 years and over; 75% of strokes occur in people over the age of 65.(Di Carlo, Baldereschi et al. 2003; Heuschmann, Di Carlo et al. 2009) In Europe and in Italy, the prevalence of stroke is 4.6 to 7.3 per 1,000.(Di Carlo, Baldereschi et al. 2003) Stroke is the leading cause of disability in the adult population(SPREAD 2007) and has a significant impact on patients and their informal caregivers.(Fattore, Torbica et al. 2012; Zorowitz, Gillard et al. 2013) Caregivers of patients with stroke have been found to have a poor quality of life, and frequently develop depression, anxiety, sleep disorders and health problems.(Nir, Greenberger et al. 2009; McCarthy, Powers et al. 2011) Caregiving for persons who have had a stroke differs from caregiving related to other chronic conditions, such as Alzheimer's Disease or cancer.(Glasdam, Timm et al. 2010) In other chronic conditions, caregiving may increase gradually, which may allow for adaptation to caregiving. However, in the case of stroke, caregiving begins suddenly. In addition, the duration of hospital stays for persons who have had a stroke has significantly decreased in the last few years,(Hall, Levant et al. 2012; Morris, Hunter et al. 2014) which consequently increases the burden for caregivers who begin to take care of their loved ones very soon after the stroke event.(O'Connell, Baker et al. 2003; Lutz, Young et al. 2011)
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Descriptions of the experience of stroke caregivers have focused on specific experiences and populations, and have considered varied time intervals from the initiation of caregiving. Studies of specific experiences have investigated the caregiver’s experience of the patient’s transition from hospital to home,(Lutz, Young et al. 2011; Plank, Mazzoni et al. 2012) and the experience of caregivers during the acute phase of the stroke.(Hunt and Smith 2004; Wallengren, Friberg et al. 2008; Ellis-Hill, Robison et al. 2009; Gustafsson and Bootle 2013) Studies focused on specific populations of stroke caregivers have been conducted on female caregivers(Saban and Hogan 2012) and older caregivers.(GosmanHedstrom and Dahlin-Ivanoff 2012) Studies considering different time intervals from caregiving initiation have broadly investigated the experience of caregivers within two years from the initiation of caregiving(Brereton and Nolan 2000; Dowswell, Lawler et al. 2000; Kerr and Smith 2001; Smith, Lawrence et al. 2004; Greenwood, Mackenzie et al. 2009; Greenwood, Mackenzie et al. 2010; Cecil, Parahoo et al. 2011) without a precise time frame. It is important to note, however, that stroke recovery has a long trajectory and several studies conducted with patients have documented that their psychological and physical status changes over time.(Huang, Chang et al. 2013; Pallesen 2014) Rachpukdee et al.(Rachpukdee, Howteerakul et al. 2013) found that even predictors of quality of life in stroke survivors change during the stroke trajectory. Because several studies have found that the condition of stroke survivors affects their caregivers’ conditions,(Carod-Artal, Ferreira Coral et al. 2009; Lutz, Young et al. 2011; Godwin, Swank et al. 2013) these changes in stroke survivors may have effects on the experience of stroke caregivers. Consequently, the stroke caregiver’s experiences might change over time. Understanding 111
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their experiences would improve knowledge on the stroke trajectory from the caregivers’ perspective, which is needed to tailor interventions for caregivers. Studies with patients have shown that a comprehensive description of the “initial” experience of the stroke trajectory can be obtained three months after the patient’s discharge.(Rachpukdee, Howteerakul et al. 2013; Simeone, Savini et al. 2014) In fact, soon after the stroke, patients are mainly focused on physical recovery and do not consider other aspects of their lives, such as relationships with family or the impact of the stroke on their daily lives. Both Simeone et al.(Simeone, Savini et al. 2014) and Rachpukdee al.(Rachpukdee, Howteerakul et al. 2013) found that at three months after discharge, patients have started to see how the stroke will impact their lives, and it is possible to describe an initial experience of the stroke. Assuming that the stroke trajectory might be similar in stroke patient-caregiver dyads, we chose the same time frame to study the experiences of caregivers.
To our knowledge, only two studies have described the experience of stroke caregivers three months after stroke survivors have been discharged home. Pierce et al.(Pierce, Steiner et al. 2006) studied nine stroke caregivers but the aim of the study was to explore only the problems of participants who all lived in a rural area and had been enrolled in a web-based educational intervention. The second study(Greenwood, Mackenzie et al. 2009) included 31 stroke caregivers, but one limitation of this study was that patients were allowed to attend the interview and this might have limited the openness of the caregiver to report their experience. With so little knowledge of the
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experience of stroke caregivers, the aim of this study was to describe the lived experience of stroke caregivers three months following the discharge of patients from a rehabilitation hospital.
Methods Design We used a phenomenological design to conduct the study.(Cohen, Kahn et al. 2000) We chose this method because it is well-suited to obtaining a deeper understanding of both the lived experience and the meaning people attribute to that experience. Some investigators(Banja 2011; Goldberg 2011; Prigatano 2011) have highlighted the importance of studying the stroke experience with phenomenology because perceptions and expectations after a profound life change, such as that caused by stroke, have a deep phenomenological connection. Participants Participants enrolled in this study were purposefully selected from an Italian longitudinal study aimed at investigating quality of life in stroke survivors and their caregivers.(Savini, Buck et al. 2014) In this study, patients and caregivers were enrolled at the time of discharge and then followed-up for one year. The inclusion criteria for patients were: 1) being age 18 and over; 2) being discharged from a rehabilitation hospital three months after a first stroke; 3) being able to sign informed consent to the study; 4) having no comorbidity with motor disorders unrelated to the stroke; 5) having no cancer or severe organ failure; 6) having no dementia and no aphasia. Inclusion criteria for caregivers were:
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1) being able to give signed informed consent to the study; 2) being recognized as the principal informal caregiver by the stroke survivor; 3) being age 18 and over. Among 48 caregivers enrolled in the longitudinal study, a purposive sample of caregivers was enrolled until data saturation was achieved with 25 participants. Twenty-three caregivers lived in Rome and two lived in Naples. Data collection and analysis Data collection was preceded by "bracketing"(Cohen, Kahn et al. 2000) that required all investigators involved in the analysis to describe their own pre-understanding and perceptions of the phenomenon under investigation. Bracketing reduces the possibility that extracted themes from the analysis reflect any prejudices of the researchers. After bracketing, all interviews were performed by the first author at the caregiver’s home because the participant’s natural environment facilitates the natural reporting of experiences.(Cohen, Kahn et al. 2000) Also, all interviews were conducted with openended question/s in order to give complete freedom to participants to describe what was most important to them.(Cohen, Kahn et al. 2000) Caregivers were asked to describe what it was like for them to care for patients during the immediate three months since the patient was discharged home from the rehabilitation hospital. As has been successfully applied in other research, 33,36,42 the interviewer had a welcoming attitude during the interview in order to facilitate caregivers in describing their genuine experiences. All interviews were digitally audio-recorded. During and soon after the interviews, the interviewer wrote fieldnotes about the environment, the interview setting, the body language and his own reflections.(Cohen, 114
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Kahn et al. 2000) When caregivers stopped describing their experience and seemed to have nothing else to add, the interviewer asked if they had anything more to say and the interview ended when the caregiver said “no”. All interviews lasted from 30 minutes to one hour. Data saturation(Porter and Cohen 2013) was achieved after 25 interviews. The interviewer also collected the sociodemographic information of each caregiver (e.g. age, education, number of caregiving hours) and administered the Barthel Index to patients at the end of the interviews after patients signed the informed consent form. The Barthel Index(Mahoney and Barthel 1965) was used in this study in order to determine the patient’s level of autonomy, which has an impact on the caregiver’s quality of life.(Hung, Huang et al. 2012; Kang, Myung et al. 2014) The Barthel Index examines 10 variables that describe the activities of daily living (e.g. feeding). The total score ranges from 0 to 100 and higher scores mean better autonomy. Interviews were all transcribed verbatim. For this study, interviews were also translated into English to involve the foreign investigators of the research team. Then, all researchers immersed themselves in the data by reading and re-reading the transcriptions of the interviews and the fieldnotes in order to extract the themes of caregivers’ experiences. To establish the trustworthiness of the themes, the extracted themes were discussed among researchers until agreement was achieved; discussion with the foreign researchers was conducted via e-mail. The validity of the final extracted themes was also established by interviewing all participants again after the extraction of themes. All participants verified the accuracy of the extracted themes. The last phase of the analysis consisted of writing the scientific report. 115
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Ethical consideration Ethical approval was obtained before data collection in each centre where participants were enrolled. Caregivers and patients signed informed consent forms before the interviews and data collection. In addition, participants were assured that all data collected were confidential.
Results Participants consisted of five males and 20 females (Table 1). Their mean age was 55.9 years, most caregivers were married (n = 20) and approximately 50% were employed. Caregivers had a mean of 46 hours of caregiving per week. Twelve caregivers were children of the stroke survivor, and 20 caregivers also had their own children. Stroke survivors were 18 males and seven females with a mean age of 71.4 years (Table 2). Most (n = 18) were educated only at the elementary level and about half (n = 11) were married. The most frequent type of stroke was an ischemic stroke and the mean score at the Barthel Index was 72. This denotes that patients, on average, were quite independent in activities of daily living, although they needed some help. Seven themes emerged from the phenomenological analysis as follows: deeplychanged life; re-appreciation of the relationship with patient and family members; increased workload; difficulties in getting support from the national health-care system; lack of preparation for caregiving; difficulties in coordinating caregiving, family and personal life; and relief after patient’s recovery.
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117 Table 1. Sociodemographic characteristics of caregivers (n=25) Code
Age
Gender
Marital
Education
Employment
Status
Relationship to
Caregiving
Caregiver
patient
Hours
with children
01
65
F
M
H
C
SP
48
Y
02
72
F
M
M
O
SP
50
Y
03
41
F
W
H
C
C
6
Y
04
45
M
S
D
O
C
30
N
05
39
M
S
D
C
C
35
N
06
38
F
M
H
C
C
55
Y
07
40
F
D
H
F
C
40
Y
08
67
F
M
M
O
SP
100
Y
09
49
F
S
H
C
C
30
Y
10
54
F
S
D
W
C
40
N
11
61
F
M
M
W
SP
36
Y
12
42
F
M
H
W
SI
40
Y
13
57
F
M
H
R
C
40
Y
14
74
M
M
H
R
SP
45
Y
15
68
F
M
M
R
SI
40
Y
16
73
F
M
H
O
SP
52
N
17
65
F
M
E
R
O
40
Y
18
57
M
M
M
R
C
60
Y
19
49
F
M
H
C
C
34
Y
20
49
F
D
H
C
SP
36
Y
21
63
F
M
H
R
C
50
Y
22
49
F
S
H
C
SP
40
N
23
67
F
M
D
R
SP
62
Y
24
55
M
M
H
C
C
100
Y
25
59
F
M
E
O
SP
45
Y
Notes : Gender: M = male; F = female; Marital status: M = married; W = widowed; S = single; D = divorced; Education: E = elementary; M = middle school; H = High School; D = university degree; Employment: W = worker; C = Clerk; F = freelancer; R = retired; O = other employment); Relationship to patient: SP = Spouse; C = Children; SI = Sibling; O = Other; Caregiver with children: Y = yes; N = no
117
118 Table 2. Sociodemographic and clinical characteristics of stroke survivors (n = 25). Code
Age
Gender
Education
Marital
Employment
Status
Type of
Stroke site
stroke
Barthel Index
01
77
M
E
M
R
I
R
30
02
75
M
E
M
R
H
R
65
03
68
M
E
W
R
I
L
80
04
78
M
E
W
R
I
L
100
05
64
M
D
M
R
H
R
85
06
68
M
M
M
R
I
R
100
07
72
F
E
W
R
I
R
100
08
73
M
E
M
R
I
R
65
09
80
F
E
W
R
I
L
85
10
83
M
E
W
R
I
R
95
11
63
M
M
M
R
I
R
100
12
34
M
M
D
R
I
R
100
13
79
F
E
W
R
I
R
25
14
72
F
E
M
R
I
R
65
15
73
M
E
M
R
I
L
40
16
77
M
E
W
R
I
L
95
17
62
F
H
M
R
I
R
20
18
82
M
E
M
R
I
R
70
19
83
F
E
W
R
I
L
45
20
58
M
D
D
O
H
R
95
21
90
M
E
W
R
I
L
95
22
52
M
D
D
O
H
R
70
23
73
M
H
M
R
H
L
70
24
79
F
E
W
R
I
R
25
25
71
M
E
M
R
I
R
40
Note. Gender: M = male; F = female; Marital status: M = married; W = widowed; S = single; D = divorced; Education: E = elementary; M = Middle School; H = High school; D = university degree; Employment: E = employed; R= retired; Type of stroke: I = Ischemic; H = hemorrhagic; Stroke site: R = right hemisphere; L = left hemisphere.
118
119
Deeply-changed life
Most participants described being alone and having a sudden life change after the patient’s stroke. Indeed, the stroke was an abrupt and unexpected event, and caregivers found themselves in a new life situation where they suddenly had the responsibility of caring for another person. A son of a stroke survivor (18) reported: “Life changes because you suddenly find yourself in a different role, with strong tasks and responsibilities.” Similarly, another participant (07) said: “My life has changed suddenly, in a radical way. Looking after my mother was such an unexpected task for me and I cannot deny that it is very hard.” A daughter summed up her experience (08): “Suddenly you find yourself alone, and having to do everything for your family member who had a stroke.”
Re-appreciation of the relationship with patient and family members Caregivers found that their relationships were enhanced after experiencing their loved one’s stroke. While they had to cope with a new and challenging situation, this experience for some caregivers also had “positive” effects because of the affection that re-emerged within the family. Some caregivers found their relationship with the patient improved after the stroke and some also found that the relationship with other family members improved. In fact, the support these caregivers received from other family members after the patients’ stroke made them re-appreciate relationships within the family. A stroke survivor's daughter (06) noted: “My father’s stroke made me realize how great is the love I feel for him. I don’t want to say that I didn’t love him before, but now we feel even closer emotionally.” 119
120
Another stroke survivor's daughter (07) reported: “It is strange to say but it has been thanks to the stroke that I have to report a positive experience related to the care I give to my mother” [patient with stroke]. A caregiver (14) described the re-discovery of these feelings: “Well, because of my wife’s stroke we all [family members] are more united now to achieve something. Before the stroke we were united, but now we are more united than before.”
Increased workload All stroke survivors in this study were cared for at home. This required a great deal of effort from the caregivers, especially since many patients did not receive any assistance from the National Health Service. Caregivers described an increased workload from the requirement of caregiving. A participant (25) reported: “In the last three months I have been working as a “nurse”. I take care of my husband all day long and all night.” Another wife caregiver (08) said: “My work has greatly increased: at night I have to wake up to change his diaper; during the day I have to turn him in the bed and feed him. I have to take care of him constantly. I devote myself to him 24 hours a day.” Interestingly, this caregiver’s patient scored 100 on the Barthel Index, but the ceiling effect of this instrument is well known in the literature.(Sarker, Rudd et al. 2012)
Difficulties in getting support from the National Health-care System Difficulty in dealing with the offices of the National Health-care Service and their procedures was a very common experience among study participants. Most complained 120
121
about the bureaucracy and delays in getting information and needed services. One wife (01) noted: “Briefly, the offices of the local health district leave you alone! If you know how to go and manage some situations ok, otherwise nothing! It took me three months to get a wheelchair.” Another common problem experienced by participants was that they had not received sufficient information about the available resources and the procedures to access those resources: “Why was it that no one told us how and what to do at home, how to behave? No information was given to me, by anyone” (25). A daughter (3) told us: “Once [my father was] at home, the complicated work of the bureaucracy started. Little information, which was not always correct. To obtain a wheelchair it was a nightmare.”
Lack of preparation in caregiving Our participants suddenly had to learn new abilities and skills to cope with their family members’ new situations. They had to care for a patient with physical disabilities, sometimes confined to bed or to a wheelchair and sometimes with urinary or faecal incontinence. This might explain the recurrent theme in the experience of caregivers that they lacked sufficient preparation. One caregiver (18) reported: “How can I do this if I don’t know anything about the care I have to give to my father? No one has told me anything. I read something but the real situation is different.” Almost all noted their lack of preparation in their caregiving role, and many were also afraid to cause problems for the patient. A daughter (07) said: “I lack the knowledge for doing things safely and without apprehension. And
121
122
maybe I have also transferred my fear to cause damages to my mother [the patient] and I think this is not good. I’m afraid to hurt her and she is aware of this.”
Difficulties in coordinating caregiving, family and personal life Seventeen of the participants had a job and for most of them it was very difficult to be a caregiver and to find balance among their job, their family and their personal life. They constantly felt that caregiving was diverting energy from their job and their family. Most found it difficult to put all these things together and have a normal life. A son (05) said: “Well, I cannot hide the fact that it is not easy to care for my father. You cannot juggle between work, home, wife and your family members with this disease.” This caregiver was afraid that caregiving could affect his job and said: “You cannot start working already tired, sleepy, irritated, distracted by other thoughts.” And another participant said (18): “My family needs attention but how can you cope with all this?”. The feeling of losing one's own life and of giving up one’s own habits was often expressed (07): “I spend more time at home and certainly not for personal pleasure but to take care of my mother.” As a daughter said (13): “You have to give up taking a walk or going to dinner with a friend. You give up your personal life.”
Relief after patient’s recovery Some patients cared for by our participants had recovered by three months after being discharged home, and these caregivers felt relieved. This relief was also related to having less involvement in caregiving than they had experienced before. A caregiver (21) said: 122
123
“We are coming back to normal. Now I see him getting better and, consequently, I feel better too, because I work less for him. Now I have more time for me and I feel relieved.” Another caregiver (13) reported: “The fact that she is well and that I'm slowly loosening the grip makes me feel better both physically and mentally.”
Discussion The purpose of this study was to describe the experience of caregivers of persons with stroke three months after being discharged home. The findings of this study improve our understanding about a specific time in the caregiving trajectory. Other investigators with qualitative methodologies have studied lived experiences of caregivers, but very few have focused on this early time, the specific time of our investigation.
The changes in the stroke caregiver’s life are a recurrent theme in the literature regardless of the type of caregivers and the time from caregiving initiation. Greenwood et al.(Greenwood, Mackenzie et al. 2009) studied caregivers of stroke survivors at one month and three months from patient discharge from hospital and found that caregivers experienced a life change that they referred to as uncertainty. In our study, changes in life were referred to as changed roles and the sadness about the changes. Bulley et al.(Bulley, Shiels et al. 2010) investigated the experiences of nine stroke survivor-caregiver dyads from two to seven years after the stroke, and found a similar theme. They labeled the theme “lives turned upside-down” that included other sub-themes such as changes in domestic and caring workloads, increased cognitive and emotional impact, reduced participation in life and changed expectations of life. In our study, all interviewed participants also linked their life changes to the sudden assumption of responsibility, as 123
124
found by Plank et al.,(Plank, Mazzoni et al. 2012) in their description of the experience of new informal Italian caregivers during the transition from hospital to home. The assumption of responsibility for the care-receiver may have important cultural aspects, and both our study and Plank’s show an Italian phenomenon.
The help received from family and friends in our sample was well appreciated by caregivers as other investigators have also found.(Greenwood, Mackenzie et al. 2010; Cecil, Parahoo et al. 2011; Plank, Mazzoni et al. 2012) However, in our study, the theme was the “re-appreciation” of family relationships; our caregivers appreciated this reconnection of family relationships even more than any physical assistance in caregiving. Hunt et al.(Hunt and Smith 2004) also found the theme they called “strength of relationships” in stroke caregivers, and they commented that strengthening of family relationships after the stroke was a kind of coping strategy for the caregiver in the new role.
Our participants reported an increase in their daily workload at home. Indeed, this aspect is very common in stroke caregivers, and has been found in several quantitative studies.(Kerr and Smith 2001; Pierce, Steiner et al. 2006; Bulley, Shiels et al. 2010)
Our caregivers very often experienced difficulties in getting support from the national health-care system. Unlike what is described by Cecil et al.,(Cecil, Parahoo et al. 2011) our caregivers never complained about the type and quality of information received from health professionals to better assist the patient. Rather, our participants specifically
124
125
criticized the slow bureaucracy involved in getting help from the national health-care system, the lack of information and the slow process for getting medical devices.
Lack of preparation in caregiving was another issue for our participants. The lack of preparation can have serious consequences for both patients and caregivers. (Ahn, Hochhalter et al. 2012; Tao, Ellenbecker et al. 2012; Henriksson and Arestedt 2013)
It has been found that lack of preparation in caregivers can last even over a year from when the stroke survivors return home(Cecil, Parahoo et al. 2011),(Kerr and Smith 2001). Plank et al.(Plank, Mazzoni et al. 2012) found that fear in stroke caregivers may be the result of lack of information in dealing with the care. This lack of preparation may lead to fear of causing harm to the patient.
Most of the caregivers had a family and their own job and it was hard to find a balance among providing care to the stroke survivor, family and job. As reported by Kerr et al.,(Kerr and Smith 2001) caregivers wanted to give their best service to patients, but felt that they neglected their own family, and this made them feel guilty. In our study, the feeling of difficulties in finding a balance in life emerged very soon, in contrast to Kerr et al.’s(Kerr and Smith 2001) finding one year after patient’s discharge. The relief after the patient's recovery is undoubtedly an aspect of positive caregiving, as also reported in Pierce et al.(Pierce, Steiner et al. 2007) Our caregivers perceived benefit in the recovery of the survivors as this allowed them to devote less time to providing care. The literature has reported that even a slight physical improvement in stroke survivors makes caregivers feel relieved.(Simeone, Savini et al. 2014) 125
126
Limitations
Our study has limitations, most notably the high autonomy of the stroke survivors that might have influenced the experiences of caregivers. In fact, the Barthel index scores were quite high and this means that participants in our study were quite functionally autonomous in activities of daily living. Even though a reported theme by caregivers was “increased workload”, it could be that the perception of workload was not completely dependent on patients’ autonomy but also by mood disturbances that are very common in stroke caregivers.(McLennon, Bakas et al. 2014) Another limitation is that our sample included mainly female caregivers (20 out of 25) and this aspect may have influenced the experience reported in our study. However, the caregiver population is mainly composed of women.
Implications for practice
* providers should develop educational, supportive programs for stroke caregivers
* providers should facilitate the use of resources from the national health system
* providers should improve stroke caregiver preparation in caring for patients
Conflicts of interest
None declared.
Funding
This study was funded by the Centre of Excellence for Nursing Scholarship, Rome, 126
127
References
Ahn, S., A. K. Hochhalter, et al. (2012). "Self-reported physical and mental health of older adults: the roles of caregiving and resources." Maturitas 71(1): 62-69.
Banja, J. D. (2011). "Stroke rehabilitation and the phenomenological reconstitution of the self." Top Stroke Rehabil 18(1): 24-29.
Brereton, L. and M. Nolan (2000). "'You do know he's had a stroke, don't you?' Preparation for family care-giving--the neglected dimension." J Clin Nurs 9(4): 498-506.
Bulley, C., J. Shiels, et al. (2010). "Carer experiences of life after stroke - a qualitative analysis." Disabil Rehabil 32(17): 1406-1413.
Carod-Artal, F. J., L. Ferreira Coral, et al. (2009). "Burden and perceived health status among caregivers of stroke patients." Cerebrovasc Dis 28(5): 472-480.
Cecil, R., K. Parahoo, et al. (2011). "'The hard work starts now': a glimpse into the lives of carers of community-dwelling stroke survivors." J Clin Nurs 20(1112): 1723-1730.
Cohen, M. Z., D. Kahn, et al. (2000). Hermeneutic Phenomenological Research: A Practical Guide for Nurse Researchers. Thousand Oaks, CA, Sage.
Di Carlo, A., M. Baldereschi, et al. (2003). "Stroke in an elderly population: incidence and impact on survival and daily function. The Italian Longitudinal Study on Aging." Cerebrovasc Dis 16(2): 141-150.
Donnan, G. A., M. Fisher, et al. (2008). "Stroke." Lancet 371(9624): 1612-1623. 127
128
Dowswell, G., J. Lawler, et al. (2000). "Investigating recovery from stroke: a qualitative study." J Clin Nurs 9(4): 507-515.
Ellis-Hill, C., J. Robison, et al. (2009). "Going home to get on with life: patients and carers experiences of being discharged from hospital following a stroke." Disabil Rehabil 31(2): 61-72.
Fattore, G., A. Torbica, et al. (2012). "The social and economic burden of stroke survivors in Italy: a prospective, incidence-based, multi-centre cost of illness study." BMC Neurol 12: 137.
Glasdam, S., H. Timm, et al. (2010). "Support efforts for caregivers of chronically ill persons." Clin Nurs Res 19(3): 233-265.
Go, A. S., D. Mozaffarian, et al. (2014). "Heart disease and stroke statistics--2014 update: a report from the American Heart Association." Circulation 129(3): e28e292.
Godwin, K. M., P. R. Swank, et al. (2013). "The longitudinal and dyadic effects of mutuality on perceived stress for stroke survivors and their spousal caregivers." Aging Ment Health 17(4): 423-431.
Goldberg, G. (2011). "Medical phenomenology and stroke rehabilitation: an introduction." Top Stroke Rehabil 18(1): 1-5.
Gosman-Hedstrom,
G.
and
S.
Dahlin-Ivanoff
(2012).
"'Mastering
an
unpredictable everyday life after stroke'--older women's experiences of caring and living with their partners." Scand J Caring Sci 26(3): 587-597.
128
129
Greenwood, N., A. Mackenzie, et al. (2010). "Loss of autonomy, control and independence when caring: a qualitative study of informal carers of stroke survivors in the first three months after discharge." Disabil Rehabil 32(2): 125133.
Greenwood, N., A. Mackenzie, et al. (2009). "Managing uncertainty in life after stroke: a qualitative study of the experiences of established and new informal carers in the first 3 months after discharge." Int J Nurs Stud 46(8): 1122-1133.
Gustafsson, L. and K. Bootle (2013). "Client and carer experience of transition home from inpatient stroke rehabilitation." Disabil Rehabil 35(16): 1380-1386.
Hall, M. J., S. Levant, et al. (2012). "Hospitalization for stroke in U.S. hospitals, 1989-2009." NCHS Data Brief(95): 1-8.
Henriksson, A. and K. Arestedt (2013). "Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: A correlational, cross-sectional study." Palliat Med 27(7): 639-646.
Heuschmann, P. U., A. Di Carlo, et al. (2009). "Incidence of stroke in Europe at the beginning of the 21st century." Stroke 40(5): 1557-1563.
Huang, H. C., C. H. Chang, et al. (2013). "Differential trajectory of functional recovery and determinants for first time stroke survivors by using a LCGA approach: a hospital based analysis over a 1-year period." Eur J Phys Rehabil Med 49(4): 463-472.
129
130
Hung, J. W., Y. C. Huang, et al. (2012). "Factors associated with strain in informal caregivers of stroke patients." Chang Gung Med J 35(5): 392-401.
Hunt, D. and J. A. Smith (2004). "The personal experience of carers of stroke survivors: an interpretative phenomenological analysis." Disabil Rehabil 26(16): 1000-1011.
Kang, H. S., W. Myung, et al. (2014). "Factors associated with caregiver burden in patients with Alzheimer's disease." Psychiatry Investig 11(2): 152-159.
Kerr, S. M. and L. N. Smith (2001). "Stroke: an exploration of the experience of informal caregiving." Clin Rehabil 15(4): 428-436.
Lutz, B. J., M. E. Young, et al. (2011). "The crisis of stroke: experiences of patients and their family caregivers." Top Stroke Rehabil 18(6): 786-797.
Mahoney, F. I. and D. W. Barthel (1965). "Functional Evaluation: The Barthel Index." Md State Med J 14: 61-65.
McCarthy, M. J., L. E. Powers, et al. (2011). "Poststroke depression: social workers' role in addressing an underrecognized psychological problem for couples who have experienced stroke." Health Soc Work 36(2): 139-148.
McLennon, S. M., T. Bakas, et al. (2014). "Task Difficulty and Life Changes Among Stroke Family Caregivers: Relationship to Depressive Symptoms." Archives of Physical Medicine and Rehabilitation.
Morris, S., R. M. Hunter, et al. (2014). "Impact of centralising acute stroke services in English metropolitan areas on mortality and length of hospital stay: difference-in-differences analysis." BMJ (Clinical Research Ed.) 349: g4757. 130
131
Nir, Z., C. Greenberger, et al. (2009). "Profile, burden, and quality of life of Israeli stroke survivor caregivers: a longitudinal study." J Neurosci Nurs 41(2): 92-105.
O'Connell, B., L. Baker, et al. (2003). "The educational needs of caregivers of stroke survivors in acute and community settings." J Neurosci Nurs 35(1): 21-28.
Pallesen, H. (2014). "Body, coping and self-identity. A qualitative 5-year followup study of stroke." Disabil Rehabil 36(3): 232-241.
Pierce, L. L., V. Steiner, et al. (2007). "Two sides to the caregiving story." Top Stroke Rehabil 14(2): 13-20.
Pierce, L. L., V. Steiner, et al. (2006). "Problems of new caregivers of persons with stroke." Rehabil Nurs 31(4): 166-172; discussion 173.
Plank, A., V. Mazzoni, et al. (2012). "Becoming a caregiver: new family carers' experience during the transition from hospital to home." J Clin Nurs 21(13-14): 2072-2082.
Porter, E. and M. Cohen (2013). Phenomenology. Reviewing Qualitative Research in the Social Sciences. A. Trainor and E. Graue. New York, Routledge: 180-196.
Prigatano, G. P. (2011). "The importance of the patient's subjective experience in stroke rehabilitation." Top Stroke Rehabil 18(1): 30-34.
Rachpukdee, S., N. Howteerakul, et al. (2013). "Quality of Life of Stroke Survivors: A 3-Month Follow-up Study." J Stroke Cerebrovasc Dis 22(7): e70-78.
131
132
Saban, K. L. and N. S. Hogan (2012). "Female caregivers of stroke survivors: coping and adapting to a life that once was." J Neurosci Nurs 44(1): 2-14.
Sarker, S. J., A. G. Rudd, et al. (2012). "Comparison of 2 extended activities of daily living scales with the Barthel Index and predictors of their outcomes: cohort study within the South London Stroke Register (SLSR)." Stroke 43(5): 1362-1369.
Savini, S., Buck, H., Dickson, V.V., Simeone, S., Pucciarelli, G., Fida, R., Matarese, M., Alvaro, R., Vellone, E. (2015). Quality of life in stroke survivorcaregiver dyads: a new conceptual framework and longitudinal study protocol. J Adv Nurs.,Mar;71(3):676-687.
Simeone, S., S. Savini, et al. (2014). "The experience of stroke survivors three months after being discharged home: A phenomenological investigation." European Journal of Cardiovascular Nursing.
Smith, L. N., M. Lawrence, et al. (2004). "Informal carers' experience of caring for stroke survivors." J Adv Nurs 46(3): 235-244.
SPREAD (2007). "Ictus cerebrale: linee guida italiane di prevenzione e trattamento."
Retrieved
July
30,
2014,
from
www.spread.it/files/SPREAD_5_2007_sintesi.pdf.
Tao, H., C. H. Ellenbecker, et al. (2012). "The influence of social environmental factors on rehospitalization among patients receiving home health care services." ANS Adv Nurs Sci 35(4): 346-358.
132
133
Wallengren, C., F. Friberg, et al. (2008). "Like a shadow--on becoming a stroke victim's relative." Scand J Caring Sci 22(1): 48-55.
World Health Organization (2013). "The Atlas of Heart Disease and Stroke." Retrieved
July
30,
2014,
2014,
from
http://www.who.int/cardiovascular_diseases/resources/atlas/en/.
Zorowitz, R. D., P. J. Gillard, et al. (2013). "Poststroke spasticity: sequelae and burden on stroke survivors and caregivers." Neurology 80(3 Suppl 2): S45-52.
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CHAPTER 5 CONCLUSIONS AND FUTURE DEVELOPPMENTS
Stroke is the second leading cause of death in the Western world, preceded only by heart disease and cancer (Donnan, Fisher et al., 2008). Stroke is the leading cause of disability in the adult population; one year after a stroke about one-third of patients are entirely dependent due to high levels of residual disability (SPREAD, 2007). This results in a significant impact on individuals, families, and health care costs (Fattore, Torbica et al., 2012; Zorowitz, Gillard et al., 2013). The first study will provide a description of the stroke survivor–caregiver dyad QOL within the first year after a stroke, including patterns of QOL over time. The study will identify predictors, mediators, and moderators of QOL for stroke survivor– caregiver dyads. The longitudinal approach will examine how the independent variables and dyad outcomes change over time. The conceptual framework introduced in this dissertation (Chapter 2) to examine QOL both in stroke survivors and their caregivers has the potential to provide important information pertinent to the care of stroke survivor–caregiver dyads across the stroke trajectory. Findings will inform clinical practice by identifying the predictors of dyad QOL that are present in the pre-existing situation prior to stroke and the new situation post-stroke. Understanding how environmental-related variables moderate dyadic QOL will allow providers to implement a plan of care focused on the needs of the stroke survivor–caregiver dyad. Understanding the 134
135
complexity of the dyadic relationship can help to develop a plan of care and an effective recovery strategy that will positively address the negative effects of stroke and reinforce the dyad relationship. The results of the second study (Chapter 3) allowed us to uncover the meaning that patients give to the first three months after they return home after a stroke. From a clinical perspective, our findings emphasized the importance of continuing physical, psychological, and spiritual recovery even when patients return home. In fact, our participants reported feelings that might affect their recovery such as realizations of deeply changed lives, vivid memories of the stroke event, and concerns about being a burden on their families. These findings might be useful for nurses and other health care professionals in the acute phase of the stroke, in rehabilitation, and particularly in home care settings. In fact, Vincent et al. (2007) showed a gap between the health care professionals’ rehabilitation goals and those of stroke survivors; while professionals are more focused on physical and cognitive rehabilitation, patients are more focused on the return to their normal life that will result from the rehabilitation. Knowing how patients experience their return to normal life may help professionals provide stroke survivor-centred care. Quantitative studies have found several predictors of patients’ quality of life after a stroke (Allan, Rowan et al., 2013; van Bragt, van Ginneken et al., 2013) and have also described quality of life change over time (Teoh, Sims et al., 2009; Rachpukdee, Howteerakul et al., 2012). Nevertheless, 40% of stroke survivors are not satisfied with the care they received (Tistad, Tham et al., 2012). Fraas (2011) has emphasized that phenomenological studies can offer a comprehensive and holistic 135
136
approach to study stroke recovery, can facilitate survivors’ (and caregivers’) recovery by highlighting factors that promote successful recovery, and can guide clinicians to develop a more effective and holistic treatment, which in turn can improve active survivors’ coping styles based on their expectations. The results of the third study (Chapter 4) provided a comprehensive understanding of the lived experience of caregivers of stroke survivors during the three months following patients’ discharge. Caregiving for persons who have had a stroke differs from caregiving related to other chronic conditions, such as Alzheimer’s disease or cancer (Glasdam, Timm et al., 2010). In other chronic conditions, caregiving often increases gradually, which may allow an adaptation to caregiving. However, in the case of stroke, caregiving begins suddenly. In addition, the duration of hospital stays for persons who have had a stroke has significantly decreased in recent years (Hall, Levant et al., 2012; Morris, Hunter et al., 2014), which consequently increases the burden for caregivers who begin to take care of their loved ones very soon after the stroke event (O’Connell, Baker et al., 2003; Lutz, Young et al., 2011). We know that the recovery process from stroke is dynamic and unstable (Dixon, Thornton et al., 2007; Patel, McKevitt et al., 2007). Several studies have found that the condition of stroke survivors affects their caregivers’ conditions (Carod-Artal, Ferreira Coral et al., 2009; Lutz, Young et al., 2011; Godwin, Swank et al., 2013); these changes in stroke survivors may have effects on the experience of stroke caregivers. Consequently, the stroke caregiver’s experiences might change over time. The results obtained from this study can allow the development of educational interventions to help caregivers in their new 136
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role with patients. Interventions should help improve caregiver preparation and should educate caregivers about using the resources of the national health system. Understanding the lived experience of stroke survivors and their informal caregivers, including the relationship of stroke-related variables such as the type and site of stroke, physical functioning, and stroke complications together with caregiverrelated variables such as burden, expenses, and caregiving duration can help develop effective health education programs. A holistic understanding of the phenomenon is able to promote a more effective and efficient design for care plans.
References
Allan, L. M., E. N. Rowan, et al. (2013). "Long-term incidence of depression and predictors of depressive symptoms in older stroke survivors." Br J Psychiatry 203: 453-460.
Carod-Artal, F. J., L. Ferreira Coral, et al. (2009). "Burden and perceived health status among caregivers of stroke patients." Cerebrovasc Dis 28(5): 472-480.
Dixon, G., E. W. Thornton, et al. (2007). "Perceptions of self-efficacy and rehabilitation among neurologically disabled adults." Clin Rehabil 21(3): 230240.
Donnan, G. A., M. Fisher, et al. (2008). "Stroke." Lancet 371(9624): 1612-1623.
137
138
Fattore, G., A. Torbica, et al. (2012). "The social and economic burden of stroke survivors in Italy: a prospective, incidence-based, multi-centre cost of illness study." BMC Neurol 12: 137.
Fraas, M. R. (2011). "Enhancing quality of life for survivors of stroke through phenomenology." Top Stroke Rehabil 18(1): 40-46.
Glasdam, S., H. Timm, et al. (2010). "Support efforts for caregivers of chronically ill persons." Clin Nurs Res 19(3): 233-265.
Godwin, K. M., P. R. Swank, et al. (2013). "The longitudinal and dyadic effects of mutuality on perceived stress for stroke survivors and their spousal caregivers." Aging Ment Health 17(4): 423-431.
Hall, M. J., S. Levant, et al. (2012). "Hospitalization for stroke in U.S. hospitals, 1989-2009." NCHS Data Brief(95): 1-8.
Lutz, B. J., M. E. Young, et al. (2011). "The crisis of stroke: experiences of patients and their family caregivers." Top Stroke Rehabil 18(6): 786-797.
Morris, S., R. M. Hunter, et al. (2014). "Impact of centralising acute stroke services in English metropolitan areas on mortality and length of hospital stay: difference-in-differences analysis." BMJ (Clinical Research Ed.) 349: g4757.
O'Connell, B., L. Baker, et al. (2003). "The educational needs of caregivers of stroke survivors in acute and community settings." J Neurosci Nurs 35(1): 21-28.
Patel, M. D., C. McKevitt, et al. (2007). "Clinical determinants of long-term quality of life after stroke." Age Ageing 36(3): 316-322. 138
139
Rachpukdee, S., N. Howteerakul, et al. (2013). "Quality of Life of Stroke Survivors: A 3-Month Follow-Up Study." J Stroke Cerebrovasc Dis, Oct;22(7):e70-8.
SPREAD (2007). "Ictus cerebrale: linee guida italiane di prevenzione e trattamento."
Retrieved
Jennary
18th,
2015,
from
www.spread.it/files/SPREAD_5_2007_sintesi.pdf.
Teoh, V., J. Sims, et al. (2009). "Psychosocial predictors of quality of life in a sample of community-dwelling stroke survivors: a longitudinal study." Top Stroke Rehabil 16(2): 157-166.
Tistad, M., K. Tham, et al. (2012). "Unfulfilled rehabilitation needs and dissatisfaction with care 12 months after a stroke: an explorative observational study." BMC Neurol 12: 40.
van Bragt, P. J., B. T. van Ginneken, et al. (2014). "Predicting outcome in a postacute stroke rehabilitation programme." Int J Rehabil Res, Jun;37(2):110-7.
Vincent, C., I. Deaudelin, et al. (2007). "Rehabilitation needs for older adults with stroke living at home: perceptions of four populations." BMC Geriatr 7: 20.
Zorowitz, R. D., P. J. Gillard, et al. (2013). "Poststroke spasticity: sequelae and burden on stroke survivors and caregivers." Neurology 80(3 Suppl 2): S45-52.
139
140
ARTICLES PUBLISHED DURING THE DOCTORAL PROGRAM
Simeone S, Savini S, Torino F, Vellone E, Alvaro R. (2014). [Mutuality in caregiving: a literature review]. Prof Inferm., Jul-Sep;67(3):155-65. Pucciarelli G, Savini S, Byun E, Simeone S, Barbaranelli C, Vela RJ, Alvaro R, Vellone E. (2014). Psychometric properties of the Caregiver Preparedness Scale in caregivers of stroke survivors. Heart Lung., Nov-Dec;43(6):555-60. Savini, S., Buck, H., Dickson, V.V., Simeone, S., Pucciarelli, G., Fida, R., Matarese, M., Alvaro, R., Vellone, E. (2015). Quality of life in stroke survivor-caregiver dyads: a new conceptual framework and longitudinal study protocol. J Adv Nurs.,Mar;71(3):676687. Simeone, S., Savini, S., Cohen, M.Z., Alvaro, R. and Vellone E. (2014). The experience of stroke survivors three months after being discharged home: A phenomenological investigation. Eur J Cardiovasc Nurs. 2014 Feb 2. [Epub ahead of print]. Vellone, E., Savini, S., Simeone, S., Barbato, N., Castrovillano, G., Caramia, M. D., et al. (2011). [Reliability of caregivers in assessing the quality of life of stroke survivors: an explorative study]. Assist Inferm Ric, 30(4), 180-188.
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