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UNIVERSITÀ DEGLI STUDI DI ROMA "TOR VERGATA" DOTTORATO DI RICERCA IN SCIENZE INFERMIERISTICHE

XXVII CICLO

Caregiver Contributions to Self-Care in Heart Failure: Developing an Instrument and Identifying the Determinants and Impact of Caregiver Contributions on Patients and Caregivers

Ercole Vellone, RN, MSN

Academic Year 2013/14

Tutor: Prof. Barbara Riegel, RN, DNSc, FAHA, FAAN Coordinator: Prof. Leonardo Palombi 1 © Copyright 2014, Ercole Vellone

TABLE OF CONTENTS ACKNOWLEDGEMENT ............................................................................................................ 4 ABSTRACT OF THE DISSERTATION ..................................................................................... 5 CHAPTER 1 ................................................................................................................................. 7 INTRODUCTION ........................................................................................................................ 7 Caregivers in HF Care .................................................................................................................. 9 Aims of This Doctoral Research Program .................................................................................. 11 Conceptual Framework ............................................................................................................... 11 Links of the Conceptual Framework to Caregiver Contribution to HF Self-Care .................. 14 Operational Definitions ............................................................................................................... 16 Caregiver ................................................................................................................................. 16 Self-care .................................................................................................................................. 17 Caregiver contribution to patient self-care .............................................................................. 17 Assumptions................................................................................................................................ 17 Limitations .................................................................................................................................. 18 Significance of the Work ............................................................................................................ 18 Summary ..................................................................................................................................... 19 References ................................................................................................................................... 20 CHAPTER 2 ............................................................................................................................... 29 VALIDITY AND RELIABILITY OF THE CAREGIVER CONTRIBUTION TO SELF-CARE OF HEART FAILURE INDEX .................................................................................................. 29 Abstract ....................................................................................................................................... 30 Introduction ................................................................................................................................. 31 Methods....................................................................................................................................... 34 Results ......................................................................................................................................... 38 Discussion ................................................................................................................................... 49 References ................................................................................................................................... 53 CHAPTER 3 ............................................................................................................................... 57 THE KEY ROLE OF CAREGIVER CONFIDENCE IN CAREGIVER’S CONTRIBUTION TO SELF-CARE IN ADULTS WITH HEART FAILURE ....................................................... 57 Abstract ....................................................................................................................................... 58 Introduction ................................................................................................................................. 59 Methods....................................................................................................................................... 62 Results ......................................................................................................................................... 65 2 © Copyright 2014, Ercole Vellone

Discussion ................................................................................................................................... 74 References ................................................................................................................................... 78 CHAPTER 4 ............................................................................................................................... 85 EFFECTS OF SELF-CARE ON QUALITY OF LIFE IN ADULTS WITH HEART FAILURE AND THEIR SPOUSAL CAREGIVERS: TESTING DYADIC DYNAMICS USING THE ACTOR-PARTNER INTERDEPENDENCE MODEL ............................................................. 85 Abstract ....................................................................................................................................... 86 Introduction ................................................................................................................................. 87 Method ........................................................................................................................................ 89 Results ......................................................................................................................................... 95 Discussion ................................................................................................................................. 100 References ................................................................................................................................. 104 CHAPTER 5 ............................................................................................................................. 114 DISCUSSION AND CONCLUSION ...................................................................................... 114 The Major Results of This Doctoral Program........................................................................... 114 Study Results and Links to Conceptual Framework ................................................................. 116 Conclusions and Implication for Research and Clinical Practice ............................................. 118 References ................................................................................................................................. 119 LIST OF ARTICLES PUBLISHED DURING THE DOCTORAL PROGRAM .................... 122

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ACKNOWLEDGEMENT As my doctoral program comes to an end I want to take the time to thank the many people who have been involved in this endeavor. First of all I want to thank my family. Thank you Alessandra, Giovanni and Francesco for your love and patience. Without your constant support this process would have been impossible. Secondly, I want to thank my mentor Barbara Riegel, RN, DNSc, FAHA, FAAN, Professor at the University of Pennsylvania School of Nursing. Thank you, Barbara, for devoting these years to me. You have introduced me to the international cardiovascular nursing science and have given to me the opportunity to work with so many collaborators. You have been the “key” opening so many doors to my scientific career. Thirdly, I want to thank the reviewers of my dissertation: Philip Moons, PhD, RN, FAHA, NFESC, FEANS, Professor at Center for Health Services and Nursing Research at the University of Leuven (Belgium) and Anna Stromberg, RN, PhD, NFESC, Professor at the University of Linkoping (Sweden). Thank you very much for your careful review and cogent comments. Lastly, I want to thank all of my colleagues who contributed to my success: Rosaria Alvaro, RN, MSN, Associate Professor at the University of Rome Tor Vergata, for her guidance and ongoing academic advice; Antonello Cocchieri, RN, PhD; Claudio Barbaranelli, PhD, Fabio D’Agostino, RN, MSN; Dale Glaser, PhD; Giovanni Antonetti, RN, PhD; Gennaro Rocco, RN, MSN; Roberta Fida, PhD; Tiny Jaarsma, RN, PhD, NFESC, FAAH; Misook L. Chung, RN, PhD, FAHA, FAAN; Harleah G. Buck, RN, PhD, CHPN, FPCN; Victoria V. Dickson, RN, PhD, FAHA, FAAN for your co-authorship in publications completed during my PhD program; and Christopher S. Lee, PhD, RN, FAHA, FAAN and Karen S. Lyons, PhD, two investigators with whom I have recently collaborated. I have learned so much from all of you.

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ABSTRACT OF THE DISSERTATION Background. Heart Failure (HF) is a pandemic chronic disease with a prevalence of approximately 1% to 3% in the general population. Self-care is considered a cornerstone of HF treatment because patients who perform self-care have better outcomes; however patients struggle to perform adequate self-care. Caregiver contribution to self-care may be important in helping patients to perform self-care but relatively little is known about this issue. Caregivers are thought to contribute to self-care maintenance (e.g., monitor symptoms and adhere to treatment regimen) and self-care management (e.g., recognize and intervene in HF symptoms). Caregiver contribution to self-care is also influenced by caregiver confidence (e.g., confident to keep patients free of HF symptoms). Although caregiver contributions may be important in HF patient self-care, (1) no instruments are available to measure this contribution; (2) no prior studies have examined caregiver contributions to HF patient self-care and potential determinants of this contribution; and (3) no prior studies have analyzed the manner in which caregiver contribution to patient self-care and patient self-care influence each other’s quality of life (QOL). Objective. The objective of this doctoral program was: (1) to develop a disease-specific instrument to measure caregiver contribution to HF patient self-care (the Caregiver Contribution to Self-Care of Heart Failure Index; CC-SCHFI); (2) to describe caregiver contributions to HF patient self-care and identify the role of caregiver confidence in that contribution; and (3) to explore the manner in which self-care contributes to QOL in patients and caregivers. Methods. In a cross sectional study, we enrolled a sample of 1.192 HF patients and 515 caregivers (86% spouse and child caregivers, mean age 56.6 years, SD=14.9, 52.4% female) from 28 Italian provinces and then we conducted three separate studies corresponding to each doctoral objective. Caregivers were the main caregivers of HF patients and patients had a confirmed diagnosis of HF without a coronary event in the last 3 months. Caregivers and patients were enrolled during patients’ ambulatory visits. Data were analyzed with descriptive statistics and with confirmatory

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factor analysis (CFA; Study 1), hierarchical regression (Study 2), and Actor-Partner Interdependence Model (APIM; Study 3). Results. In the first study, CFA showed good fit indices for each CC-SCHFI scale: caregiver contribution to self-care maintenance (comparative fit index = .97); management (comparative fit index = .96); and caregiver confidence in contributing to self-care (comparative fit index = .99). Internal consistency and test-retest reliability were adequate (from .65 to .96). In the second study, caregiver contributions to patient self-care maintenance were low in weight monitoring and physical activity but high in checking ankles, advising on low-salt foods and taking medicines. The caregiver contribution to patient self-care management was low in symptom recognition. Caregiver confidence explained a significant amount of the variance in the caregiver contribution to self-care maintenance (R2 = 0.16) and self-care management (R2 0.34). In the third study, both actor and partner effects were found. Higher self-care was related to lower physical QOL in patients and caregivers. Higher self-care maintenance in patients was associated with better mental QOL in caregivers. Higher caregiver confidence in contributing to self-care was associated with improved caregiver mental QOL but worsened physical QOL in patients. Conclusion. This doctoral program has provided investigators with a new instrument to measure caregiver contribution to patient HF self-care. The instrument has adequate psychometric properties and is ready for use in clinical research. Using the CC-SCHFI, we have shown that caregivers do not contribute sufficiently to HF self-care, and that caregiver confidence was the most important determinant of a meaningful contribution by caregivers. This evidence is important because caregiver confidence is modifiable and suitable for intervention. We also demonstrated that selfcare by patients and caregivers is performed in response to a worsening of the patient’s physical QOL. This result emphasizes the importance of educating caregivers and patients on the importance of performing self-care before the illness worsens. Key words: Caregivers, heart failure, instrument development, self-care, self-efficacy, quality of life. 6 © Copyright 2014, Ercole Vellone

CHAPTER 1 INTRODUCTION The European Society of Cardiology (ESC) defines heart failure (HF) as “an abnormality of cardiac structure or function leading to a failure of the heart to deliver oxygen at a rate commensurate with the requirements of the metabolizing tissues, despite normal filling pressures (or only at the expense of increased filling pressures)” (McMurray et al., 2012) (p. 808). Similarly, the American College of Cardiology/American Heart Association (Yancy et al., 2013) defines HF as “a complex clinical syndrome that results from any structural or functional impairment of ventricular filling or ejection of blood” (p. e153). HF is considered a pandemic disease with high prevalence and incidence rates. In the United States, it has been estimated that 5.1 million people are affected by HF (Go et al., 2014), which corresponds to 2.1% of the total population. In Europe, 15 million people are affected by HF, a prevalence of 2.2% (Zarrinkoub et al., 2013) of the general population. In Italy, where this study was conducted, the prevalence of HF is between 1.1% (Valle et al., 2006) and 1.4% (Gini et al., 2013) of the general population. HF is a condition that increases in prevalence with age and affects more than 25% of the population aged 75–84 years old. It has been predicted that between 2013 and 2030 there will be an increase of 25% in the number of people with HF (Go et al., 2013). HF is a disease with poor outcomes. Mortality due to HF is high (Gomez-Soto et al., 2011): After diagnosis, the 30-day, 1-year, and 4-year mortality rates are 12.1%, 28.8%, and 61.4%, respectively. The 5-year mortality rate for HF is similar to that of cancer (58% and 59%, respectively) (Stewart, Ekman, Ekman, Oden, & Rosengren, 2010). HF is also associated with a poor quality of life (QOL): The burden of physical and psychological symptoms caused by HF are similar to cancer (Bekelman et al., 2009), even though the general population thinks

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that HF is less serious than cancer, myocardial infarction, stroke, and diabetes (Lainscak et al., 2014). HF is also associated with high costs. Cook et al. (2014) estimated that, for every year, the global cost of HF is 108 billion dollars. In 2012, the United States spent 30,700 million dollars to treat HF (1.09% of all health expenditures), while Italy spent 3,924 million dollars (2.05% of all health expenditures) (Cook, et al., 2014). Representing 1%–2% of all hospitalizations (Ambrosy et al., 2014), decompensated HF is the leading cause of all hospitalizations. A recent study conducted in Italy (Corrao, Ghirardi, Ibrahim, Merlino, & Maggioni, 2014) demonstrated that the cost for newly hospitalized HF patients is 11,100 euros per person. Self-care is considered to be a cornerstone of HF treatment (Moser et al., 2012) because it has been widely shown that patients who perform self-care have a better quality of life QOL (Liu, Wang, Huang, Cherng, & Wang, 2014; Tung et al., 2013) and reduced number of hospitalizations (Kato et al., 2013; Tsuchihashi-Makaya et al., 2013). Self-care has been defined as the process of maintaining physiological stability and the decision-making response to symptoms when they occur (Riegel & Dickson, 2008). Although self-care is extremely important in HF care, it is suboptimal (Jaarsma et al., 2013; B. Riegel et al., 2009): A recent study conducted in Italy revealed that only about 20% of HF patients perform adequate self-care (Cocchieri et al., 2014). Indeed, HF is a chronic condition; patients are required to be vigilant about their signs and symptoms of decompensation, to use less salt in their diet, to participate in physical activity, and to take several medications (McMurray, et al., 2012). All these behavioral changes can be burdensome for patients (Gallacher, May, Montori, & Mair, 2011). Also, cognitive impairment, which affects 25-50% of adults with HF, and comorbidity may be additional conditions that decrease the quality of self-care (Dickson, Buck, & Riegel, 2013; Dodson, Truong, Towle, Kerins, & 8 © Copyright 2014, Ercole Vellone

Chaudhry, 2013; Gure et al., 2012). Considering all these issues, caregiver contributions to selfcare may be important in helping patients to implement the treatment regimen.

Caregivers in HF Care The National Alliance for Caregiving (2009) has defined caregivers as those who provide unpaid care to adults or children with special needs. This care can include help with personal needs, household chores, managing personal finances, arranging for outside services, or visiting the care receiver regularly. In the United States, it has been estimated that 65.7 million people serve as caregivers for an average of 20.4 hours per week and that 3.3 million caregivers are involved specifically in caring for patients with cardiovascular disease. Most of this care is spent in supporting the care receiver in at least one activity of daily living (56%) and also in instrumental activities of daily living, such as transportation (83%), housework (75%), grocery shopping (75%), meal preparation (65%), managing finances (64%), and arranging or supervising outside services (34%) (National Alliance for Caregiving, 2009). Twenty-two per cent of caregivers are also involved in delivering medical treatments, such as administering medications. In Europe, it has been estimated that there are 125 million caregivers who provide 80% of the informal care to elderly or disabled persons (EUROCARERS, 2009). Estimates on the number of caregivers in Italy are not available; based on the above European data, however, one can deduce that there are more than 14 million caregivers in Italy. Several studies have been conducted on HF caregivers. These studies can be categorized into the following four groups: 1.

Studies on the (positive and negative) experiences of being caregivers for HF patients (Chung, Pressler, Dunbar, Lennie, & Moser, 2010; Clark et al., 2008; Helleso, Eines, & Fagermoen, 2012; Luttik, Blaauwbroek, Dijker, & Jaarsma, 2007; Malik, Gysels, & 9

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Higginson, 2013; Pattenden, Roberts, & Lewin, 2007; Sanford, Townsend-Rocchicciolli, Horigan, & Hall, 2011); 2.

Studies focused on the impact of caregivers on patient outcomes (Chung, Moser, Lennie, & Rayens, 2009; Gallagher, Luttik, & Jaarsma, 2011a);

3.

Physical and psychological QOL for HF caregivers, including its predictors (Chiang, Chen, Dai, & Ho, 2012; Luttik, Jaarsma, Lesman, Sanderman, & Hagedoorn, 2009; Malik, et al., 2013; Saunders, 2009; Yeh & Bull, 2012);

4.

Studies on caregiver contribution to patient self-care (Clark, et al., 2008; Gallagher, Luttik, & Jaarsma, 2011b; Piamjariyakul, Smith, Werkowitch, & Elyachar, 2012a, 2012b; Sebern & Riegel, 2009); The last group of studies has been recently included in a systematic review, (H.G Buck

et al., 2014) which found 30 unique studies on the topic that were conducted in eight different countries (United States, the Netherlands, Canada, Scotland, the UK, Sweden, Australia, and Norway). An analysis of these studies found that caregivers were involved in three domains of activities: 1) monitoring, which included activities such as checking blood pressure or weighing the patient daily; 2) “system navigating,” which involved the interaction of caregivers with the health-care system (e.g., making appointments with the physician); and 3) interpersonal skills, which consisted of helping patients to adhere to self-care behaviors. Authors of the above systematic review found caregivers to be involved in a plethora of caregiving activities; however, the authors concluded that there is a need to have psychometrically sound instruments to measure caregiver contribution to HF patient self-care and to conduct studies on the impact of caregiver contributions to HF patient outcomes. Although, in other caregiver populations, caregiver contribution to patient self-care has been shown to have a significantly positive impact on patient and caregiver outcomes (Ugalde, Krishnasamy, & Schofield, 2014; Zhang, 10 © Copyright 2014, Ercole Vellone

Guo, Edwards, Yates, & Li, 2014b), caregiver confidence in contributing to patient self-care has not yet been studied in reference to HF caregivers.

Aims of This Doctoral Research Program The overall aim of this doctoral research program was to expand knowledge on the caregiver contribution to self-care in persons with HF and to understand its determinant and impact on patients’ self-care. Specifically the following aims were formulated: 1.

to develop a disease-specific instrument to measure caregiver contribution to HF patient self-care and to assess its psychometric properties;

2.

to describe caregiver contribution to HF patient self-care and to identify its determinants as well as the role of caregiver confidence in caregiver contribution to patient self-care; and

3.

to analyze the manner in which adult patients with chronic HF and their informal spousal caregivers influence each other’s self-care behavior and quality of life.

Conceptual Framework The conceptual framework that has guided this doctoral program is the situationspecific theory of HF self-care by Riegel and Dickson (2008). According to this theory (Figure 1), self-care has two dimensions: self-care maintenance and self-care management. Self-care maintenance was theorized as the basis of self-care and includes the two sub-dimensions of symptom monitoring (e.g., weighing every day) and treatment adherence (e.g., reducing the amount of salt in the diet). The dimension of self-care management is actually a process that patients activate when they have symptoms of HF exacerbation. In this process, the theory has identified four stages: 1) symptom recognition, which is the awareness that some health status changes (e.g., ankle 11 © Copyright 2014, Ercole Vellone

swelling) are due to HF; 2) symptom evaluation, which is the ability of patients to evaluate the importance of symptoms; 3) treatment implementation, which implies that patients take actions to reduce symptoms (for example, reducing fluid intake); and 4) treatment evaluation, which means being sure whether the implemented treatment did, or did not, help.

Figure 1. The situation-specific theory of HF patient self-care. Riegel and Dickson (2008) have theorized that self-care maintenance and self-care management are influenced by self-care confidence, which is the task-specific confidence by which patients engage in each phase of the self-care process. Self-care confidence has been theorized as a mediator and a moderator of self-care: As a mediator, self-care confidence “precedes” self-care; that is, patients perform better self-care maintenance and management if they have higher levels of self-care confidence. With this assumption in mind, there could be variables that affect self-care maintenance and management through self-care confidence; as a moderator, self-care confidence can affect the strength, either by inhibiting or enhancing and/or directing the association between self-care maintenance, self-care management, and HF outcomes. All the above-mentioned dimensions of self-care maintenance, management, and

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confidence are captured by the Self-Care of Heart Failure Index (B Riegel, Lee, Vaughan Dickson, & Carlson, 2009), a disease-specific tool that measures HF self-care. One proposition of the situation-specific theory of HF self-care is that mastering selfcare maintenance precedes mastering self-care management. The full model of this relationship between self-care maintenance and self-care management in HF has been tested in this doctoral program (Vellone, Riegel, D'Agostino, et al., 2013) using structural equation modeling (Figure 2). In this study, carried out on a sample of 417 Italian HF patients (mean age 72.3 years, 57.8% males, 74.5% NYHA classes II and III), other relationships were identified, such as a direct effect of symptom monitoring on treatment implementation, a direct effect of symptom recognition and evaluation on treatment evaluation, and a correlation between symptom monitoring and treatment evaluation. The model fit the data very well, with the following fit indices: χ 2(2) = 65, p 0.02; comparative fit index = 0.98; root mean square error of approximation = 0.08 (CI 90% 0.027 – 0.140); standardized root mean square residual = 0.023.

Figure 2. The situation-specific theory as tested by the structural equation model.

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Links of the Conceptual Framework to Caregiver Contribution to HF Self-Care The situation-specific theory of HF self-care was developed and tested on patients but currently we do not have evidence that the same mechanism performed by patients in self-care (e.g. the influence of self-care maintenance on self-care management) is performed by caregivers in contributing to self-care. However, as reported above, a group of studies have been specifically conducted to analyze caregiver contribution to patient self-care maintenance and management. Caregiver contribution to patient’s self-care maintenance. Treatment adherence and symptom monitoring, two sub-dimensions of self-care maintenance in the situation-specific theory of HF self-care, are considered a cornerstone in HF care. Current European guidelines (McMurray, et al., 2012) suggest that people with HF should follow the pharmacological treatment and engage in self-care behaviors such as eating healthily and keeping a healthy weight, reducing or avoiding alcohol intake, not smoking, exercising, and receiving immunization for influenza and pneumococcal disease. All these recommendations are met differently: for example patients find it easier to follow pharmacological prescription bur harder to exercise (Cocchieri, et al., 2014; Jaarsma, et al., 2013). Literature on caregiver contribution to self-care maintenance has shown that caregivers improve patient’s adherence to self-care. Gallagher et al (2011b) found that social support by a caregiver improved several patient’s self-care behaviors such as fluid intake, medication adherence, and flu vaccination. Foebel et al (Foebel, Hirdes, & Heckman, 2012) has specifically studied medication adherence in HF patients and found that caregiver co-residence with the patient improves medication adherence in patients. In a recent qualitative systematic review (Strachan, Currie, Harkness, Spaling, & Clark, 2014) one of contextual factors that influence patient self-care was the caregiver. In this systematic review caregivers were found to

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facilitate three aspect of self-care: medication management (e.g., adding an extra diuretic in case of fluid overload), sodium reduction in the diet and symptom recognition. Caregivers are also involved in patient symptom monitoring such as monitoring weight, ankle edema and dyspnea (Clark, et al., 2008). In the secondary analysis of the COACH study (Gallagher, et al., 2011b), 95% of HF patients reported that their caregivers “paid attention” to their symptoms, however no studies have quantified the frequency of symptom monitoring by caregivers. Quinn et al (Quinn, Dunbar, & Higgins, 2010) have shown that caregivers evaluate the frequency and gravity of some symptoms such as extremity edema, difficulty concentrating, and dizziness, even when they do not co-reside with patients, but are less helpful in evaluating other HF symptoms such as depression, shortness of breath at night, and shortness of breath when lying down. Caregiver contribution to patient self-care management. In HF patients self-care management includes a quickly recognition and interpretation of HF symptoms, actions to reduce fluid overload (e.g., taking an extra diuretic), consulting with a provider and the evaluation if applied remedies have worked (Riegel & Dickson, 2008). Self-care management is complex for patients considering that 25% - 50% of HF patients are affected by cognitive impairment (Dodson, et al., 2013). When symptoms of exacerbation occur it has been shown that only the 26% of patients seek care in less than 12 hours (Sethares, Sosa, Fisher, & Riegel, 2014). Prior studies have shown that caregivers not only contribute to patient self-care in general but also facilitate adherence during symptom exacerbation (Clark et al., 2014). Also, when HF patients have caregiver support they contact the provider more often for symptoms (Gallagher, et al., 2011b). In a qualitative study where caregivers have been asked about patient management of symptoms, 30% reported that they contacted a physician or nurse in case of problems (Piamjariyakul, Smith, Werkowitch, & Elyachar, 2012c).

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Caregiver confidence in contributing to HF patient’s self-care. Self-care maintenance and management in HF patients are also influenced by self-efficacy in the specific self-care task (e.g., confidence in following the HF treatment) (Riegel & Dickson, 2008). Several studies have shown that when patients have higher confidence in their self-care behaviours they are more successful in performing these behaviours (Cene et al., 2013; Dickson, Deatrick, & Riegel, 2007). Currently caregiver confidence in contributing to HF patient self-care has not been studied; however studies conducted on other caregiver populations show that caregivers with higher self-efficacy are better able to cope with patient illnesses and to contribute to patient care (Durmaz & Okanli, 2014; Peterson et al., 2014; Zhang, Guo, Edwards, Yates, & Li, 2014a). In conclusion, the literature to date illustrates that caregivers contribute to patient selfcare maintenance and self-care management and the elements of the situation-specific theory of HF self-care seems to be applicable to the behaviors of caregivers.

Operational Definitions For the purpose of this doctoral program, the following operational definitions have been adopted: Caregiver Caregiver is defined as the person (inside or outside the family) who provides most of the informal care to a person affected by HF and who was identified as such by the patient. To identify their caregivers, patients were asked to indicate the unpaid person (inside or outside the family) who provided them with most of their care (for example, taking them to medical appointments and giving them material and psychological support in their daily lives).

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Self-care Self-care is defined as a naturalistic decision-making process followed by HF patients to maintain the stability of their disease and to manage symptoms when they occur (Riegel & Dickson, 2008). The naturalistic decision-making process implies that self-care behaviours are influenced by patient characteristics (e.g., age), problems (e.g., cognitive impairment), and environment (e.g., rural setting) that interact with knowledge, experience, skills, and values (Riegel & Dickson, 2008). Caregiver contribution to patient self-care As specified in Chapter 2, caregiver contribution to patient self-care is the provision of time, effort, and support on behalf of another person who needs to perform HF self-care (Vellone, Riegel, Cocchieri, et al., 2013). In contributing to HF self-care, caregivers adapt their behaviours to the patient’s ability to perform self-care: In some cases, they only make recommendations about the practice of self-care maintenance and self-care management (e.g., weigh every day, eat a low-salt diet, take medicines, call the doctor or nurse when symptoms occur) (Vellone, Riegel, Cocchieri, et al., 2013). But when patients are unable to practice selfcare for whatever reason, caregivers substitute for their patients in all self-care processes, (they weigh the patient, choose and prepare low-salt food, administer medicines, and call the doctor/nurse when symptoms occur) (Vellone, Riegel, Cocchieri, et al., 2013).

Assumptions Assumptions are provided to illustrate potential bias of the investigator. The following assumptions about HF caregivers should be considered when reading this dissertation: 1.

Confidence in their contributions is believed to contribute to the success of caregivers in promoting self-care.

2.

Caregivers have the best interests of their patients in mind when they provide caregiving. 17

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3.

Patients desire the care provided by their caregivers.

4.

HF caregiving is influenced by the quality of the relationship between the patient and the caregiver.

These assumptions were not tested in this dissertation. They are provided only for the information of the reader.

Limitations This doctoral program has developed new knowledge in the field of nursing science. However, several limitations affect this work. Even though the results of the three studies presented in Chapters 2, 3, and 4 are based on a large data set that includes more than 1,000 patients from 28 Italian provinces, it is a single data set. Another limitation is that all the data come from a study that used a cross-sectional design. In addition, data were collected only in Italy, so generalizing the results to other countries should be done with caution.

Significance of the Work Several investigators have acknowledged the key role of caregivers in helping HF patients to perform self-care (Clark, et al., 2008; Gallagher, et al., 2011b; Piamjariyakul, et al., 2012a, 2012b; Sebern & Riegel, 2009). HF patients, in general, are older people with several comorbid conditions, mild cognitive impairment, lifestyle modification challenges (e.g., salt restriction in their diet), the burden of symptoms (e.g., fatigue) who struggle to perform selfcare (Gallacher, et al., 2011). The contribution to self-care from a caregiver may be a valuable resource for a patient. Indeed, prior research has shown that, with respect to care, shared decision making between patient and caregiver improves patient self-care maintenance and self-care confidence (Sebern & Riegel, 2009). However, as Buck and colleagues have emphasized in their systematic review (H.G. Buck et al., 2014), there is a lack of valid and reliable instruments to measure caregiver contribution to HF patient self-care. Also, we do not 18 © Copyright 2014, Ercole Vellone

know the determinants of this contribution, including the role of caregiver confidence in contributing to patient self-care, as well as how patient self-care and caregiver contribution to patient self-care influence each other’s outcomes (e.g. QOL). Of significance to this doctoral program was that the candidate started to fill this gap in the knowledge. Specifically, he developed a disease-specific instrument to measure caregiver contribution to patient self-care (Chapter 2), looked for determinants of caregiver contribution to patient self-care, including the role of caregiver confidence in contributing to patient selfcare (Chapter 3), and showed how patient and caregiver self-care influence each other’s QOL (Chapter 4). Future research will test ways to improve caregiver contributions to HF patient self-care.

Summary HF is a pandemic disease which is increasing because of the aging of the population. HF is associated with increased mortality, hospitalization, use of emergency services, and patients’ poor QOL. Self-care can improve HF outcomes, but patients may find it burdensome to perform self-care because it requires lifestyle changes that are far more significant than simply taking medications. Caregivers can be a valuable resource in contributing to patient selfcare; however, we still cannot evaluate this contribution and therefore do not know the determinants of caregiver contribution to patient self-care. Also, we do not know if self-care performed by patients and caregivers influence each other’s QOL. Guided by the situationspecific theory of HF self-care, in this doctoral program we sought to fill in the abovementioned gap in knowledge. In the following chapters, we will present three studies. The first one is on the psychometric characteristics of the Caregiver Contribution to Self-Care of Heart Failure Index (See Chapter 2); the second study is on the determinants of caregiver contribution to self-care 19 © Copyright 2014, Ercole Vellone

in HF and the role of caregiver confidence in contributing to patient self-care (See Chapter 3); finally, the third study is on the effect of self-care on QOL in adults with HF and their spousal caregivers (Chapter 4).

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CHAPTER 2

VALIDITY AND RELIABILITY OF THE CAREGIVER CONTRIBUTION TO SELFCARE OF HEART FAILURE INDEX

This chapter is published in the following source:

Vellone, E., Riegel, B., Cocchieri, A., Barbaranelli, C., D'Agostino, F., Glaser, D., Rocco, G., Alvaro, R. (2013). Validity and Reliability of the Caregiver Contribution to Self-care of Heart Failure

Index.

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10.1097/JCN.0b013e318256385e

29 © Copyright 2014, Ercole Vellone

Abstract Background. Caregivers make an important contribution to the self-care of patients with heart failure (HF) but no instruments are available to measure this contribution. Objective. The objective of this study was to test the psychometric properties of the Caregiver Contribution to Self-Care of Failure Index (CC-SCHFI), an instrument derived from the Selfcare of Heart Failure Index v.6.2 (SCHFI v.6.2). The CC-SCHFI measures the contribution of caregivers to the self-care maintenance and self-care management of HF patients, and confidence in the ability to contribute to the patients’ HF self-care. Methods. A cross-sectional design was used to study 291 Italian caregivers whose HF patients were cared for in 17 cardiovascular centers across Italy. Caregivers completed the CC-SCHFI and a sociodemographic questionnaire. Caregivers were retested on the CC-SCHFI two weeks later to assess test-retest reliability. Results. Most caregivers were female (66%) with a mean age of 59 years. First and second order confirmatory factor analysis (CFA) for each CC-SCHFI scale showed good model fit: Chi-square 37.22, p 0.08, comparative fit index (CFI) .97, non normed fit index (NNFI) .96 for caregiver contribution to self-care maintenance (second order CFA); Chi-square 14.05, p 0.12, CFI .96; NNFI .93 for caregiver contribution to self-care management (first order CFA); Chi square 10.63, p 0.15, CFI .99, NNFI .98 for caregiver confidence in contributing to self-care (second order CFA). The CC-SCHFI was able to discriminate statistical and clinical differences between two groups of caregivers who had received or not received HF self-care education. Internal consistency reliability measured by factor score determinacy was over .80 for all factors and scales except for one factor in the caregiver contribution to self-care management scale (.65). Test-retest reliability computed by intraclass correlation coefficient (ICC) was high (above .90) for most factors and scales. Conclusion. The CC-SCHFI showed good psychometric properties of validity and reliability and can be used to measure the contribution of caregiver to HF patient self-care. Key words: Heart failure, self-care, self-management, caregivers, social support, instrument development, psychometrics

30 © Copyright 2014, Ercole Vellone

Introduction Heart failure (HF) is extremely common in older adults worldwide. In the U.S. it was estimated that 2.3% of the population or 5,700,000 individuals had HF in 2008 (Roger et al., 2011). In Italy, where this study was conducted, 1.1% of the population has HF with an increasing prevalence of 12.1% in people aged 70 and over (Valle et al., 2006). A diagnosis of HF requires significant amounts of self-care, which patients find difficult to perform (Dickson & Riegel, 2009; Seto et al., 2011). Caregivers make important contributions to patient self-care (Quinn, Dunbar, & Higgins, 2010; M. Sebern & Riegel, 2009). Yet, there has been surprisingly little research on the contributions by informal caregivers to HF patient self-care. This is probably because the measurement of caregiver contributions is in its infancy. Although measures of social support are commonly available, only one measure of caregiver perceptions of HF patient self-care has been published and it is available only in English (Quinn, et al., 2010). Further, that instrument was developed as a proxy measure of the patient self-care rather than the independent contributions made by the caregiver. Thus, the purpose of this study was to describe the psychometric properties of a new scale measuring caregivers’ contributions to HF self-care that is based on the Self-care of HF Index version 6.2 (SCHFI v. 6.2)(Riegel et al., 2004; Riegel, Lee, Dickson, & Carlson, 2009). This scale is referred to as the Caregiver Contributions to the Self-Care of Heart Failure Index (CC-SCHFI). Self-care of HF has been defined as a naturalistic decision making process used to maintain physiological stability (maintenance) and to manage symptoms when they occur (management).(Riegel & Dickson, 2008; Riegel, et al., 2009) We defined the caregiver’s contribution to the HF patient self-care as the provision of time, effort, and support in the behalf of another person who needs to perform HF self-care. This definition is supported by 31 © Copyright 2014, Ercole Vellone

several studies that demonstrated that caregivers contribute to better self-care maintenance and management in HF,(Gallagher, Luttik, & Jaarsma, 2011; M. Sebern & Riegel, 2009; M. D. Sebern & Woda, 2011) even though the caregiving experience can be stressful (Dunbar, Clark, Quinn, Gary, & Kaslow, 2008). In contributing to HF self-care, caregivers adapt their behaviors to the patient’s ability to perform self-care: in some cases they only make recommendation about the practice of self-care maintenance and self-care management (e.g. weigh every day, eat a low-salt diet, take medicines, call the doctor or nurse when symptoms occur). But when patients are unable to practice self-care for whatever reason, caregivers substitute for patients in all the self-care processes, (they weigh the patient, chose and prepare low-salt food, administer medicines , call the doctor/nurse when symptoms occur). Confidence in their contributions is believed to contribute to the success of caregivers in promoting self-care. Background Informal caregivers are defined as laypersons who provide unpaid care to a relative or friend in order to help him/her take care of him/herself. These caregivers are said to be the invisible workforce in health care as they provide the vast majority of long-term services and supports received by chronically ill persons (Arno, Levine, & Memmott, 1999; National Alliance for Caregiving, 2009). In 2007, informal caregivers in the U.S. provided services estimated at $370 billion annually (Gibson & Houser, 2007; Houser & Gibson, 2008). Prior authors have studied HF caregiving. For example, Clark and Dunbar (P. C. Clark & Dunbar, 2003) developed the Family Partnership Intervention for HF caregiver based on self-determination theory. According to this theory, HF patients change their behaviors (e.g. choosing a low-salt diet) when they accept the regulation for changes as their own and not simply as the need to comply with the demands of others. In the Family Partnership Intervention HF caregivers are taught to develop an autonomy supporting context with HF patients, offering them choices, minimizing pressure, and providing alternatives instead of 32 © Copyright 2014, Ercole Vellone

criticizing and controlling patient’s behaviors. This intervention underwent experimental testing (Dunbar et al., 2005) but the measured outcomes were family functioning and sodium intake and not how and to what extent caregivers contributed to self-care. Sebern (2008) developed the Shared Care Instrument to measure the interpersonal processes used to exchange support in a dyadic relationships, based on the assumption that each dyadic member affects the other.(M. Sebern & Riegel, 2009) The interpersonal processes assessed by this instrument are related to communication, decision making, and reciprocity. The instrument is not specific for HF and the items did not explore behaviors directly involved in the HF self-care processes of maintenance and management, but the instrument has been used with the Self-Care of Heart Failure Index to analyze the correlation between shared care and patients’ self-care (M. Sebern & Riegel, 2009). That study showed that patients’ and caregivers’ decisions were associated with self-care maintenance and that caregiver decision making and reciprocity were correlated with patients’ self-care confidence. However, even though the Shared Care instrument dimensions were correlated with the patient self-care, the Shared Care instrument does not measure specific activities related to HF self-care maintenance, self-care management, and self-care confidence. Quinn et al (Quinn, et al., 2010) modified an earlier version of the SCHFI (v. 4.0)(Riegel, et al., 2004) to examine whether caregivers could be used as proxy to rate self-care management and self-care confidence of HF patients. They examined the degree of congruence between 70 HF patients and their primary caregivers, asking caregivers to rate the patient selfcare. For example, one item asked: “In the past three months, has your family member had trouble breathing or ankle swelling?” In another question, caregivers were asked: “Listed below are remedies that people with heart failure use. If your family member has trouble breathing or ankle swelling, how likely are you to try one of these remedies?” Ratings between patients and caregivers did not differ significantly, illustrating strong congruence. Internal consistency reliability for the self-care management scale as measured by Cronbach’s alpha was .51 for the 33 © Copyright 2014, Ercole Vellone

patient and .68 for the family caregiver. For the self-care confidence scale, Cronbach’s alpha was .89 for the patient and .86 for the caregiver version. The self-care maintenance scale was not included in that study. With so few measures of the caregiver contributions to HF self-care available, the purpose of this study was to derive a measure that could capture caregiver contributions to HF patients’ self-care and validate it for future use. We modified the SCHFI v.6.2 to be appropriate for caregivers, translated it into Italian, and back-translate it into English, as described below. Then we assessed the psychometric properties in an Italian sample of caregivers of patients with HF.

Methods Design, Sample, Procedure A cross-sectional design was used in which a convenience sample of HF patients was enrolled from 17 ambulatory cardiovascular centers in the provinces of Rome, Frosinone, Latina, Olbia, Udine, Benevento, Avellino, Messina, Reggio Calabria, Terni, L’Aquila, Livorno, Milan, Rieti, Bolzano, and Ragusa. These provinces are in the north, center and south of Italy. Of the 659 patients enrolled, 291 had caregivers who completed measures of sociodemographic characteristics and contributions to self-care, as described below. The Institutional Review Board at each site approved the study before data collection began and all participants provided informed consent. To be enrolled in the study, caregivers had to be caring for a patient with a confirmed diagnosis of HF who had not experienced an acute coronary event in the last three month. Caregivers had to be designated by the patients as the person who provides most of their care, be oriented to person, time and place, and be able to understand the purpose of the research. If caregivers did not meet these criteria they were excluded from the study. Data collection took 34 © Copyright 2014, Ercole Vellone

place during routine visits to the cardiovascular centers. Two week after the initial data collection all caregivers were telephoned for re-administration of the CC-SCHFI to assess testretest reliability. All data collection was performed by 20 nurses. These nurses received education about the study aims and protocol and were trained by the first author to collect the data using written material about the study and verbal instruction. The first author was always available by telephone during data collection and every 2 weeks he met with the data collectors to monitor study progress. Instruments The following instruments were used. Socio-demographic and clinical questionnaire. This instrument was developed by the research team in order to measure socio-demographic variables related to caregivers and patients (gender, age, marital status, education, employment, NYHA class, hours of caregiving). The Caregiver Contributions to the Self-care of Heart Failure Index (CC-SCHFI). The CC-SCHFI is a modification of the SCHFI v.6.2 with the same number of items (22) and scales (self-care maintenance, self-care management, and self-care confidence). The CCSCHFI measures the contribution of caregivers to patients’ HF self-care. The caregiver contribution to self-care maintenance scale has 10 items that measure symptom monitoring and adherence behaviors performed to prevent a HF exacerbation. In this section of the CC-SCHFI, caregivers are asked how often they recommend the various behaviors (e.g. weight monitoring, eating a low salt diet, taking medications) to the patient or how often they do the activities themselves because the patient is not able to do them. The caregiver contribution to self-care management scale has 6 items that measure the caregiver’s ability to recognize symptoms when they occur, treatment implementation in 35 © Copyright 2014, Ercole Vellone

response to these symptoms, and the ability to evaluate the treatments used. In the CC-SCHFI caregivers are asked “If the person you care for had trouble breathing or ankle swelling in the past month, how quickly did you recognize it as a symptom of heart failure?” Additionally, caregivers are asked: “If the person you care for has trouble breathing or ankle swelling, how likely are you to recommend (or do) one of these remedies?” Choices include: reduce salt in the diet, reduce fluid intake, take an extra water pill, and call the nurse or doctor for guidance, just as in the SCHFI v.6.2. The caregiver confidence in contributing to self-care scale uses 6 items to evaluate the caregivers’ confidence in their abilities to help the patient engage in each phase of the self-care process. For example, caregivers are asked: “In reference to the person you care for, in general, how confident are you that you can recognize changes in the patient’s health when they occur?” Each of the three scales uses a 4-point Likert scale (never or rarely, sometimes, frequently, always or daily) with a standardized score from 0 to 100; higher scores indicate higher contribution to self-care. The CC-SCHFI was prepared in Italian after first translating the SCHFI v.6.2 into Italian. The SCHFI was translated from English into Italian by two Italian researchers with expertise in English cardiovascular terminology. This Italian version was modified to accommodate caregivers. Then, this Italian instrument was back-translated into English by a bilingual individual with expertise in medical English who was blinded to the original version. Finally, the CC-SCHFI was reviewed by the author of the SCHFI v.6.2 to check the content validity of the new scale and the accuracy of the CC-SCHFI translation. Minor revisions to the translation were discussed by e-mail in order to assure a correspondence between the English CC-SCHFI format and the Italian version.

36 © Copyright 2014, Ercole Vellone

Data analysis Descriptive statistics, including means and standard deviation, were used to summarize the characteristics of the caregivers and patients. The factorial structure of the scale was examined using confirmatory factor analysis (CFA) for each separate CC-SCHFI scale, a crucial step in construct validity testing. Testing of the theoretical assumptions began with an examination of the factor structure of the Italian version of the SCHFI v.6.2 (Stavila, 2011). CFA of the CC-SCHFI was carried out using the factor structure of the SCHFI v.6.2. Data were available from the full sample of caregivers for the self-care maintenance and self-care confidence scales but data for the self-care management scale were only available from caregivers who reported that their patients were symptomatic in the prior month (with problem breathing or ankle swelling). This issue of missing data on the self-care management scale for asymptomatic patients is the same as that for the SCHFI v.6.2. Patients (and caregivers) cannot judge the management of symptoms that do not occur. Discriminant validity of the CC-SCHFI was established by comparing a subgroup of caregivers who had received self-care education with another subgroup who had not. Because the small number of caregivers in the both groups the nonparametric Mann-Whitney U test was used for this analysis. Reliabilities for each factor and each scale derived from CFA were estimated using factor score determinacy coefficients (Muthén & Muthén, 1998-2012). These coefficients represents “an estimate of the internal consistency of the solution—the certainty with which factor axes are fixed in the variable space” (Tabachnick & Fidell, 1996) (p. 649). They represent “the squared multiple correlations (SMCs) of factor scores predicted from scores on observed variables. In a good solution, SMCs range between 0 and 1; the larger the SMCs, the more stable the factors. A high SMC (say, .70 or better) means that the observed variables account for substantial variance in the factor scores. A low SMC means the factors are poorly 37 © Copyright 2014, Ercole Vellone

defined by the observed variables” (Tabachnick & Fidell, 1996) (pp. 649-650). Reliability of the CC-SCHFI scales was also tested with the Intraclass Correlation Coefficient (ICC); this coefficient gives an estimate of the test-retest stability of the scale scores, so it provides complementary information to that given by the internal consistency reliability. The P value was fixed at 0.05. Statistical analysis was performed using SPSS v.19, except for the CFA, which was performed with Mplus 6.1.

Results Description of the Sample The total sample was composed of 291 caregivers of HF patients. Table 1 shows sociodemographic and clinical characteristics of patients. Patients were almost equally distributed between males and females with some predominance of males. Patients were more than 75 years of age on average and more than the 40% of the sample was educated at only the elementary school level. Half of the patients were married and more than 30% were widowed. Most (90%) of the patient sample was not working. NYHA class was distributed throughout the four classes with most of the sample in class III and fewest in class IV. The majority of caregivers was female with a mean age of 59 years (Table 2). Education was equally distributed in the sample and few (9%) were educated at the university level. Most (70%) caregivers were married with almost half working outside the home. Most (90%) caregivers were spouses or children and almost 40% lived with the patient. Caregivers cared for the patients for 9 hours each day on average.

38 © Copyright 2014, Ercole Vellone

Table 1 Patients’ Sociodemographic and Clinical Characteristics (n = 291) Mean SD N (%) Gender Male

164 (56.4)

Female

127 (43.6)

Age

76.42

10.81

Education Elementary

129 (44.3)

Middle School

68 (23.4)

Professional School

38 (13.1)

High School

43 (14.8)

University Degree

13 (4.5)

Marital Status Married

157 (54.0)

Single

11 (3.8)

Widowed

99 (34.0)

Divorced

24 (8.2)

Profession Employed

34 (11.7)

Unemployed

257 (88.3)

NYHA I

71 (24.4)

II

89 (30.6)

III

100 (34.4)

IV

31 (10.7)

Item descriptive analysis Table 3 shows the descriptive statistics of the individual item of the CC-SCHFI. Items of the caregiver contribution to self-care maintenance scale with the highest scores were those related to “keeping doctor/nurse appointments”, “trying to avoid getting sick” and “not forgetting to take medicines”. Items addressing “exercise”, “physical activities”, and “daily weighing” scored lowest. On the caregiver contribution to self-care management scale, the 39 © Copyright 2014, Ercole Vellone

items that scored lowest were “call the doctor/nurse for guidance” and “take an extra water pill”. The item with the highest score in the caregiver contribution to self-care management scale was “reduce fluid intake”. In the caregiver confidence in contributing to self-care scale, “following treatment advice” and “recognizing health changes in the patient” scored highest. The items regarding confidence to “prevent HF symptoms”, “evaluate how well a remedy works” and “do something that relives HF symptoms” were scored lowest. Table 2 Caregivers’ Sociodemographic Characteristics (n = 291) Mean

SD

N (%)

Gender Male

101 (34.7)

Female

190 (65.7)

Age

59.16

14.56

Education Elementary

46 (15.8)

Middle School

82 (28.2)

Professional School

47 (16.1)

High School

88 (30.2)

University Degree

28 (9.3)

Marital Status Married

205 (70.4)

Single

42 (14.4)

Widowed

20 (6.9)

Divorced

24 (8.2)

Profession Employed

140 (48.1)

Unemployed

151 (51.9)

Relationship With Patient Spouse

110 (37.8)

Child

149 (51.2)

Friend

12 (4.1)

Nephew/Niece

8 (2.7)

Brother/Sister

6 (2.1)

Other Relatives

6 (2.1)

Caregiver living with patient Hours of Caregiving per day

116 (39.9) 8.90

7.79

40 © Copyright 2014, Ercole Vellone

Table 3 Descriptive Statistics for individual items of the CC-Self-Care of Heart Failure Index Mean SD

Min

Max

(1) Weigh Daily

2.41

.93

1

4

(2) Check ankles for swelling

2.73

.96

1

4

(3) Try to avoid getting sick (get a flu shot, avoid ill people)

2.88

1.04

1

4

(4) Do some physical activity

2.46

1.10

1

4

(5) Keep doctor or nurse appointments

3.06

1.03

1

4

(6) Eat a low-salt diet

2.72

1.07

1

4

(7) Exercise for 30 minutes

2.32

1.07

1

4

(8) Remember to take medicines

2.84

1.15

1

4

(9) Ask for a low-salt items when eating out or visiting others

2.65

1.16

1

4

(10) Use a system (pill-box, reminder) to help him/her remember to take medicines

2.73

1.17

1

4

(11) If the person you care for had trouble breathing or ankle swelling. how quickly did you 2.47 recognize it as a symptom of HF? If the person you care for has trouble breathing or ankle swelling. how likely are you to recommend (or do) one of following remedies? (12) Reduce salt in the diet 2.47

1.07

0

4

1.07

0

4

(13) Reduce fluid intake

2.73

1.06

1

4

(14) Take an extra water pill

2.46

1.06

1

4

(15) Call your doctor or nurse for guidance

2.28

1.19

1

4

(16) Think of a remedy you tried the last time the patient you care for had trouble breathing 2.65 or ankle swelling. How sure were you that the remedy helped or did not help him or her? Caregiver Confidence in Contributing to Self-Care

1.09

1

4

Items Caregiver Contribution to Self-Care Maintenance How often do you recommend that the person you care for do the following things?

Caregiver Contribution to Self-Care Management

In reference to the person you care for, how confident are you that you can: (17) Prevent HF symptoms

2.29

1.09

1

4

(18) Follow the treatment advice

3.03

.99

1

4

(19) Evaluate the importance of HF symptoms

2.73

1.01

1

4

(20) Recognize health changes in the person you care for

2.87

.95

1

4

(21) Do something that relieves HF symptoms

2.51

.95

1

4

(22) Evaluate how well a remedy works

2.49

.96

1

4

Factor structure of the CC-SCHFI Previous analyses conducted on the patient version of the SCHFI v.6.2 (Stavila, 2011) revealed a complex structure of the index and provided the initial model to guide the CFA of the CC-SCHFI.

41 © Copyright 2014, Ercole Vellone

Caregiver contribution to self-care maintenance scale. According to the results of the CFA on patient’s SCHFI v.6.2 scale (Stavila, 2011), a model consisting of four factors was specified. These factors were Symptom monitoring (items 1 and 2), Physical activity (items 4 and 7), Medical treatment adherence (items 3, 5, 6, 8, and 10), and Sodium intake control (items 6 and 9). All these factors were allowed to freely correlate. The initial model showed poor fit but allowing covariance between individual items (4 and 10; 8 and 9; and 7 and 9: these covariances could be explained theoretically), the fit significantly improved: χ2(25, N= 283)=30.52, p = 0.20, comparative fit index (CFI) = .98, non-normed fit index (NNFI) =.98; root mean square error of approximation (RMSEA) = .028; standardized root mean squared residual (SRMR) = .031. This analytic approach is consistent with the opinions of Fornell (Fomell, 1983) and by Bagozzi (Bagozzi, 1983) who note that it is reasonable to let measurement errors correlate when: a) these correlations are plausible from a theoretical or methodological point of view; and b) their specification does not alter the estimates of the other parameters in the model. Since the factors were correlated (with correlations ranging from .16 to .61 with an average correlation of .42) a second order hierarchical model was examined (Gribbons & Hocevar, 1998). In this model a second order factor was posited that accounted for covariation in the first order factors. Figure 1 gives a graphical description of the final caregiver contribution to self-care maintenance model, which fit the data well: χ2(27, N= 283)=37.22, p = 0.08, CFI = .97, NNFI =.96; RMSEA = .037; SRMR = .036. This model (Figure 1) shows that the factorial structure of the caregiver contribution to self-care maintenance scale, although multidimensional at the level of primary factors, is unidimensional at the level of the secondary, higher order factor. In this regard, as noted by Hattie (Hattie, 1985), “it is quite reasonable to find a second-order factor underlying a set of correlations between first-order factors and then make claims regarding unidimensionality” (p. 150). 42 © Copyright 2014, Ercole Vellone

Figure 1. Confirmatory factor analysis of the Caregiver Contribution to Self-care maintenance scale.

Caregiver contribution to self-care management scale. Analysis of this scale was conducted with the 154 caregivers reporting symptoms in their patients. The CFA based on the patients’ SCHFI v.6.2 results (Stavila, 2011) produced a model consisting of two factors: Autonomous management (items 11, 12, 13, and 16) and Provider-directed management (items 14 and 15). The fit of this model was good: χ2(9, N= 154)=14.05, p = 0.12, CFI = .96, NNFI =.93; RMSEA = .06; SRMR = .052. As can be easily seen in figure 2, the two factors defined by this solution were poorly correlated, with a small non significant correlation of .23. The lack of a significant correlation prevented us from hypothesizing a second order solution for the caregiver contribution to self-care management scale. While the first factor was well defined by 43 © Copyright 2014, Ercole Vellone

four items with medium to high factor loadings, the second factor had only two items with only moderate factor loadings.

Figure 2. Confirmatory factor analysis of the Caregiver Contribution to Self-care Management Scale.

Caregiver confidence in contributing to self-care. CFA using the patients’ SCHFI v.6.2 data (Stavila, 2011) results in a model with only one factor specified (items 17 to 22). Testing a unidimension model in the CC-SCHFI resulted in a poor fit: χ2(9, N= 283)=64,15, p

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