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Can quality from a care ethical perspective be assessed? A review Esther E Kuis, Gijs Hesselink and Anne Goossensen Nurs Ethics published online 7 October 2013 DOI: 10.1177/0969733013500163 The online version of this article can be found at: http://nej.sagepub.com/content/early/2013/10/03/0969733013500163
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Article
Can quality from a care ethical perspective be assessed? A review
Nursing Ethics 1–20 ª The Author(s) 2013 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733013500163 nej.sagepub.com
Esther E Kuis University of Humanistic Studies, The Netherlands
Gijs Hesselink Radboud University Nijmegen Medical Centre, The Netherlands
Anne Goossensen University of Humanistic Studies, The Netherlands
Abstract Background: Ethics-of-care theories contain important notions regarding the quality of care; however, until now, concrete translations of the insights into instruments are lacking. This may be a result of the completely different type of epistemology, theories and concepts used in the field of quality of care research. Objectives: Both the fields of ‘ethics of care’ and ‘quality of care’ aim for improvement of care; therefore; insights could possibly meet by focusing on the following question: How could ethics-of-care theories contribute to better quality in care at a measurement level? This study reviews existing instruments with the aim of bridging this gap and examines the evidence of their psychometric properties, feasibility and responsiveness. Research design: A systematic search of the literature was undertaken using multiple electronic databases covering January 1990 through May 2012. Method and findings: Of the 3427 unique references identified, 55 studies describing 40 instruments were selected. Using a conceptual framework, an attempt was made to distinguish between related concepts and to group available instruments measuring different types of concepts. A total of 13 instruments that reflect essential aspects of ethics-of-care theory were studied in greater detail, and a quality assessment was conducted. Conclusion: Three promising qualitative instruments were found, which follow the logic of the patient and take their specific context into account. Keywords Ethics of care, instruments, quality of care, systematic review
Corresponding author: Esther E Kuis, University of Humanistic Studies, Kromme Nieuwegracht 29, 3512 HD Utrecht, The Netherlands. Email:
[email protected]
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Introduction During the past decade, much research has been conducted aiming to measure, evaluate and improve quality of care.1–7 Most studies evaluate quality of care above all by means of objective measurements that focus on the medical–technical and managerial aspects of care, based on six quality domains described by the Institute of Medicine (IOM),2 namely, effective, efficient, accessible, patient-centred, equitable and safe healthcare.8 In each domain, tools are developed to measure and improve the performance of healthcare professionals. Indicators such as the number of readmissions, number of re-operations and prevalence of pressure ulcers are being measured.9 Questionnaires are used to assess outcome or satisfaction as meaningful indicators of quality of care.10 This is all very important and has led to improvement in healthcare. Yet, there is unease about what is perhaps the most important characteristic of healthcare: how patients are treated. Not in the sense of which sort of medical intervention is offered, but rather how patients are cared for and how they are looked after.11 This is often expressed in the interaction between caregiver and patient. Clinical guidelines and standardized protocols are not sufficient means for facilitating the care that each unique patient needs or wants.10,12 Of the six guiding quality domains, patient-centredness is the domain that could reflect non-instrumental aspects of quality of care. A diversity of tools has been developed to measure patient-centredness.13–16 Yet, the emphasis is placed on the autonomy, choice and independence of the patient.17 The domain is mainly operationalized by measuring communication, information, participation, shared decision-making and satisfaction.15,18–20 An ethics-of-care perspective adds important insights into the non-instrumental aspects of quality of care. Care ethicists place the quality of the relationship high on the quality agenda and address themes such as vulnerability, attentiveness, responsiveness and sensitivity for the vulnerable other, instead of focusing on autonomy and rights, individuality and freedom in their work.21,22 Studies in healthcare focus on the dynamic interactions between patient and caregiver.23 The relationship, interrelatedness and interdependency are central concepts.17,24 Characteristic is the search for (instances of) good care from a moral perspective. Joan Tronto,25 one of the founders of ethics of care, describes a model with four separate but interconnected phases of caring. Each phase corresponds to a specific value that is necessary to demonstrate caring behaviour. First, ‘caring about’ consists in paying attention and recognizing the need of the patient. The corresponding value is attentiveness. Second, ‘taking care of’ means taking responsibility for the care of the patient’s needs, responsibility being the value that counts here. Third, ‘caregiving’ means providing good and successful care. Competence is the corresponding value. The fourth phase is ‘care receiving’ and it consists of verifying that the care given actually meets the needs of the patient. Responsiveness is the corresponding value here. Following Tronto,25 others argue that good care should (among others) not injure but rather promote growth, well-being and human flourishing.26 Care is not ‘delivered’ as a product but arises from contextual and relational understanding, through trying to understand what is going on with the other person and what is at stake and searching for an adequate answer.27 These criteria are different from those of the IOM perspective. Although ethics-of-care theory seems to offer new and valuable perspectives on quality of care, there remains a wide gap, at least, arising from quite dissimilar epistemologies. On the one hand, quality-ofcare research often takes place in terms of abstract, general, top-down (diagnostic) categories, mainly medically or managerially oriented. Knowledge is acquired by using objective, quantitative measurements such as questionnaires. On the other hand, quality reasoning in care ethics does not concentrate on general abstractions, but on particular situations. This is part of the essence of care ethics, which originated from feminist theories. This ‘feminine’ ethics is based on interconnectedness between persons and the responsibility and care for one another resulting from that. What is morally good from a care ethical perspective will be shown in this interconnectedness or relationship.22 Until now, proponents of ethics of care have chosen a strategy of inspiring professionals with philosophical considerations and theoretical insights sometimes based on analysis of crucial cases. Operationalization and measurement methods that concretize care ethics
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as such are missing. An important question is then, would it be feasible to measure quality from a care ethical perspective? And if so, how can this be measured? In this study, we will make an attempt to bridge the gap by searching for instruments that reflect care ethical insights. This is a first step in an unknown domain. To our knowledge, a rigorous systematic review on this topic has not yet been performed. We therefore made a conceptual translation of care ethics to measurable components and systematically reviewed the literature in search of available instruments for this purpose. The aim of this study was to find existing instruments or methods that do justice to measuring quality from a care ethical perspective and examine the evidence of their psychometric properties, feasibility and responsiveness.
Conceptual framework Before we describe our methods and results, it is necessary to concretize quality from a care ethical perspective in greater detail. We made an attempt to distinguish elements and build a conceptual framework. As described in the introduction, quality reasoning in care ethics does not concentrate on top-down application of general abstractions, but raises up from particular situations. Therefore, it is difficult to operationalize quality from a care ethical perspective using abstract dimensions or categories about what professionals should ‘do’ in a deductive way. An important assumption of ethics of care is that each individual is unique and will have a different opinion about what constituted good care for him or her in a particular situation. If categories are used, the risk is that they will be used in a rigid manner. This does not do justice to the complex reality. This is why we believe quality from a care ethical perspective to be best operationalized as a fit or match between the need or wish of the patient and the care provided.28 The opposite of fit is mismatch, which is described as ‘a failure to connect care and need correctly’.29 We are using ‘need’ and ‘wish’ in the broadest sense. Mismatch could be caused by a lack of relational attunement to the needs and wishes of the other, even while medical–technical care is excellent. Although ethics of care ultimately cannot be measured using categories of behaviour that professionals should perform, it could be helpful to find categories with which the (mis)match between the patients’ needs and the care can be assessed. These categories could raise awareness about, among others, non-instrumental aspects of care and the attitudes and perceptions of caregivers. This could help caregivers to search for logic (or reasoning) of the patient, find out what is really at stake for the other and what he or she wishes or needs, often besides, after or under the disease, thereby broadening the perspective of the caregivers on quality of care. Good care addresses then the medical–technical dimension of care, and the humanistic, relational dimension of interactions as well.30 These two major dimensions of care overlap, with some authors going so far as to suggest that they cannot be separated.31,32 Different authors have searched for dimensions of care ethics, most of them inspired by the 10 factors of human caring as described by Watson.33 These guidelines for nurses engaging in caring are among others: the cultivation of sensitivity to one’s self and to others, the development of a helping– trusting relationship and the promotion and acceptance of the expression of positive and negative feelings. According to Watson’s theory of human caring, the nurse should develop and sustain a helping–trusting, authentic caring relationship with her patients in order to promote healing and health. Moreover, in Watson’s theory, the nurse–patient caring relationship protects, enhances and preserves the patient’s dignity, humanity and wholeness.33 Cossette et al.34 point out four aspects of (assessing) good care: (a) humanistic care (nurse’s attitude and behaviours with regard to a patient’s own capacities and abilities, empowerment), (b) relational care (assisting patients to recognize the meaning associated with their health situation), (c) clinical care (all the expertise required for clinical assessment and monitoring, symptom management and treatment and procedures) and (d) comforting care (respecting the patient’s privacy and taking their basic needs into account).34 The therapeutic relationship could help professionals to discern what it is that the patient really is asking for, wishes or needs and could therefore promote fit. Much research has been conducted regarding the therapeutic relationship or alliance, which has been described as the positive, collaborative and affective bond
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Figure 1. Conceptual framework of quality from a care ethical perspective.
between patient and therapist and their collaboration on the goals and tasks of treatment.35,36 Furthermore, the literature proposes some interesting concepts that contribute to the caregiver–patient relationship, such as the patient’s ease in communicating with his or her caregiver, comfort level in calling the caregiver, trust, participation in healthcare decision-making and satisfaction with care.37 Krupat et al.38 describe four habits that promote a good relationship, among others, ‘demonstrate empathy’. Other authors describe four key aspects of caring relationships, namely collaboration, communication, integration and empowerment.39 We have found various conceptual elements related to quality from a care ethical perspective based on a study of the international literature described above: fit, (categories to) search for the logic of the patient, the therapeutic relationship and conditional aspects of this relationship. Together, these elements have an impact on the outcome of good care in different situations, including from a moral perspective. We made an attempt to place these elements in a conceptual framework in order to describe aspects of quality from a care ethical perspective (see Figure 1). This conceptual framework is meant to distinguish between related concepts and to facilitate the ‘grouping’ of available instruments measuring different conceptual categories. We will give an overview of all instruments found and assign them to the elements. In the remainder of the article, we will present in greater detail the instruments which reflect essential parts of the ethics-of-care theory.
Methods Data sources To examine whether there are available instruments to measure quality from a care ethical perspective, a systematic search of the literature was conducted using the electronic databases of PubMed, EMBASE, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, Web of Science and Scopus. The search included relevant peer-reviewed English-language studies published between January 1990 and May
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2012. Specific strategies were developed for each database with the assistance of an experienced librarian. Combinations of terms were used related to quality from a care ethical perspective (patient-centred care, empathy, attitude of health personnel, caring, loving care, compassion, dignity, affection, devotion, non-specific factor, caring relationships, attentiveness), instruments (psychometrics, qualitative research) and the caregiver– patient relationship (professional–patient relations, patient relation, patient interaction, therapeutic relation, therapeutic alliance). A broad strategy was chosen because of the fuzzy concepts, so as not to miss important articles. A more detailed search strategy for one of the databases is found in Appendix 1. The reference lists of all included articles and identified review articles were examined to identify additional relevant studies.
Study selection Studies were included if they met all of the following criteria: 1. Were published with full text, in the period from January 1990 to 1 May 2012, and with an abstract and title in English; 2. Described instruments or instrument components (i.e. items or domains) measuring noninstrumental quality aspects in the primary process; 3. Reported data regarding psychometrics, feasibility or responsiveness of instruments or instrument components. Studies were excluded that described instruments intended (a) for use outside a care institution, (b) for use in a specific population, (c) to measure empathy as a trait and (d) to measure quality from a care ethical perspective in an organizational culture; also excluded were (e) intervention studies, (f) review studies or (g) instruments that were not published.
Title and abstract review All search results were transferred to a reference database (ENDNOTE1), and duplicates were eliminated. The initial search identified 3427 unique studies (Figure 2). Two authors (E.K. and G.H.) independently reviewed citation titles and abstracts to assess eligibility for review. References clearly not meeting the inclusion criteria were excluded, and all other references (123 studies) were retained for thorough reading. If there was any doubt, the full article was retrieved and read to determine whether it met the inclusion criteria. In cases of disagreement about inclusion, a third reviewer (A.G.) was consulted. Articles meeting all inclusion criteria were retained for data extraction.
Quality assessment of studies There are no widely accepted and used quality criteria for evaluating the rigour of measuring instruments. Therefore, the seven-criteria appraisal framework of Yu and Kirk40 was modified to six quality criteria. The framework is based on the work of Greenhalgh et al.,41 Russell et al.42 and Grange et al.43 It was applied to each instrument, and the total score possible for each instrument ranged from 0 to 12 (see Appendix 2). Two reviewers (E.K. and G.H.) separately assessed each study based on validity (e.g. face, content, construct and criterion), reliability (e.g. internal consistency, stability and equivalence), responsiveness, user-centredness, sample size and feasibility. Discrepancies were resolved through discussion.
Study review and data extraction Using a standard data-extraction form, data were extracted for each instrument. Table 2 gives general information about the instruments, covering study characteristics (authors and year), setting (country, care
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Figure 2. Flowchart.
facility and department), population and sample size. Table 3 shows the conceptual basis and origin of instruments, gives a description of the instruments (number of items and scoring of items) and provides information about subscales. Furthermore, information about validity, reliability, responsiveness and feasibility is presented. Every article was abstracted independently by two of the authors (E.K. and G.H.). Any disagreement was resolved by discussion among the reviewers.
Results Search results and article overview Of the 3427 studies, 55 met the inclusion criteria after review of the title, abstract and full article. A total of 40 unique instruments were identified. Instruments were assigned to elements of our conceptual framework (see Table 1).
Instruments measuring quality from a care ethical perspective The conceptual elements which reflect essential parts of the ethics-of-care theory are the focus of our study. Therefore, details about tools assigned to the conceptual elements ‘searching for the logic of the patient’ and ‘(mis)fit’ are provided in the remainder of the article. Studies were conducted in diverse countries, settings and populations (see Table 2). Most studies took place in the United States (47%) or Europe (32%). In all, 58% of the studies occurred within hospitals. Participants in most studies (74%) were patients, but family
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Table 1. Instruments mapped to elements of the conceptual framework. Antecedents of the therapeutic relationship
Therapeutic relationship
Four habits coding scheme38 Verona coding definitions of emotional sequences44,45 Roter interaction analysis system46 Physician–Caregiver Relationship Scale47 Active Listening Observation Scale48 Jefferson Scale of Physician Empathy49–52 Empathy scale for social workers53 Reynolds Empathy Scale54 KOPRA and KOVA questionnaire55 Healthcare Relationship Trust Scale56 Trust in Nurses Scale57 Feeling checklist58 LIV-MAAS checklist59 OPTION scale18 WHO questionnaire60 Psychosocial care by physicians61 Child and adolescent service experience62
Doctor patient consultation questionnaire63 Physician–Patient Questionnaire64 Part process analysis65,66 Relationships with Healthcare Provider Scale37 STAR measure67 4-point ordinal alliance self-report68 Brief alliance measure69 Kim Alliance Scale39 Patient–doctor relationship questionnaire70 Helping alliance questionnaire71
Searching for the logic of the patient
(Mis)fit
72–75
CARE measure Perception of Empathy Inventory76 Jefferson Scale of Patient’s Perceptions of Physician Empathy77 Caring Nurse–Patient Interaction Scale30,34,78 Caring Assessment Tool79 Human Caring Inventory80 Caring Behaviour Inventory81 Caring Behaviours Assessment Tool82–85 CONNECT instrument86 Individualized Care Scale10
Emotional touch point method87 Video lifeworld schema88 Shadowing89
STAR: Scale To Assess the Therapeutic Relationship; KOPRA: Kommunikationspra¨ferenzen – German for communication preferences (of the patient); KOVA: Kommunikationsverhalten – German for communication behavior (of the caregiver); LIV-MAAS: Liverpool-Maastricht History-Taking and Advice Checklist; OPTION: observing patient involvement; WHO: World Health Organization; CARE: Consultation and Relational Empathy.
members (5%) and caregivers (32%) also took part. A total of 13 instruments are described, 3 qualitative instruments and 10 quantitative instruments (see Table 3). Qualitative instruments Emotional touch point method. The emotional touch point method is an interview method. Patients (or relatives) are asked to discuss the key moments of their experiences of being in hospital. These are the moments when one recalls being touched emotionally or cognitively. Touch points are part of experience-based codesign.90 The reliability of the method is enhanced by using prompts, audio-recording the interview and returning transcripts to participants for comment.87 Video lifeworld schema. The video lifeworld schema is a method of video analysis. It aims at understanding human interactions during a health consultation through the use of a visual socio-phenomenological lifeworld schema of social interaction.88 This schema was constructed using the socio-phenomenological
2006 2002 1993 1999
2000 United States 2008 United States 2007 Sweden
Wu et al.81 Stanfield82 Huggins et al.83 Marini84 Manogin et al.85 Haidet et al.86 Berg et al.10
Caring Behaviour Inventory Caring Behaviours Assessment Tool
CONNECT instrument
Individualized Care Scale
CARE: Consultation and Relational Empathy.
2007 United States 2007 United States
Duffy et al.79 Ellis et al.80
Caring Assessment Tool Human Caring Inventory United States United States United States United States
2008 Canada
2006 Canada
2005 Canada
Cossette et al.78
Patient and family shadowing CARE measure United States Great Britain China Germany Great Britain United States United States
Bickerton et al.88
Video lifeworld schema 2011 2008 2009 2011 2012 2003 2007
2010 Great Britain (Scotland) 2011 Great Britain
Dewar et al.87
Emotional touch point method
DiGioia and Greenhouse89 Mercer and Murphy72 Fung et al.73 Wirtz et al.74 Kersten et al.75 Perception of Empathy Inventory Wheeler76 Kane et al.77 Jefferson Scale of Patient’s Perceptions of Physician Empathy Caring Nurse–Patient Interaction Cossette et al.30 Scale Cossette et al.34
Year Country
Authors
Instrument
Target population (N)
University of Montreal, Faculty of Nursing University of Montreal, Faculty of nursing University of Montreal, Faculty of nursing Hospital Georgia Division of Family and Children Services Hospital Hospital Hospital Long-term care, assisted living facility Hospital A variety of private and public settings Hospital
Patients (31) Patients (303 in first study, 270 in second study) Patients (370)
Patients (362), nurses (90) Patients (104) Patients (288) Patients (21)
Nurse students (322, 10.5% registered nurse students) Nurse students (377, 12.2% registered nurses) Nurse students (531, 20% registered nurses) Patients (365) Child welfare caseworkers (786)
Hospital, elderly people care, Patients (16), relatives (12) mental healthcare Walk-in centre Consultations (28) between practitioners and patients Hospital Unknown (descriptive study) Hospital Patients (1015) Primary care setting Patients (253) Hospital Patients (326) Primary care setting Patients (213) Hospital Patients (151) Hospital Patients (225)
Setting
Table 2. General information of instruments measuring essential parts of the ethics-of-care theory.
Caring Nurse– Patient Interaction Scale (Short Scale)
Jefferson Scale of Patient’s Perceptions of Physician Empathy
Perception of Empathy Inventory (Revised)
Existing literature, two existing questionnaires: physicians’ humanistic behaviour questionnaire,94 questionnaire intended to measure patients’ appraisal of physicians’ performance95 Existing literature, existing instruments for measuring caring attitudes, Watson’s caring theory33 Questionnaire including 23 items, 5-point Likert scale (‘not at all’ to ‘extremely’)
Questionnaire including 5 items, 5-point Likert scale (‘strongly disagree’ to ‘strongly agree’)
Questionnaire including 10 items, 5-point Likert scale (‘poor’ to ‘excellent’) Questionnaire including 20 items, 4-point Likert scale (‘very true’ to ‘not at all true’)
No subscale
Shadowing
Part of the patient- and family-centred care (PFCC) method (developed in University of Pittsburgh Medical Center) Existing literature and qualitative interviews with patients. Conceptualization of relational empathy92,93 Existing questionnaire (Barrett Lennard Relationship Inventory) and existing literature on empathy
Patient and Family Shadowing
CARE measure
No subscale
Video analysis
Socio-phenomenological model of practice91
Video lifeworld schema
Humanistic care (4, a ¼ .63–.74), relational care (7, a ¼ .90–.92), clinical care (9, a ¼ .80–.94) and comforting care (3, a ¼ .61–.76)34
No subscale (5)
Connectedness (11), confirmation (9)
No subscale (10)
No subscale
Narrative interview
Touch points are part of experience-based co-design90
Subscale
Emotional touch point method
Description
Conceptual base and origin
Instrument
PEI scores moderately and positively correlated to changes in client state anxiety (r ¼ .45)76 NR
Cronbach’s a (.94)79
Cronbach’s a (.58)77
Face validity and content validity (for long scale, by experts)30; exploratory and confirmatory factor analysis34,78
Cronbach’s a (.91–.95)78
Correlation with patient enablement and satisfaction
NR
NR
NR
Inter-rater reliability Cronbach’s a (.96–.97)73,75
NR
NR
Face validity (patients),73 Rasch analysis,75 criterion validity (patient enablement and satisfaction) Face validity (four patients), content validity (four nurse experts), factor analysis, criterion validity (three measures of empathy and patient anxiety (r ¼ .52, p ¼.008))76 Principal component factor analysis, criterion validity (five criterion measures)77
NR
Responsiveness
Reliability is promoted by using prompts, audio-recording the interview and returning transcripts to participants for comment87 Videos were viewed and discussed by the authors to promote reliability88 Reliability of the method is promoted by use of a shadowing template92
Reliability
NR
Validity
Table 3. Characteristics of instruments measuring essential parts of ethics-of-care theory.
(continued)
NR
Time investment for participant (few minutes)77
NR
NR
NR
NR
Time investment for participant (20 min to 1 h)87
Feasibility
Questionnaire including 63 items, 5-point Likert scale (little importance to much importance)
Watson’s theory of caring33
Review of existing literature on explanatory models of illness, 16 qualitative interviews with primary care patients in public and private practice settings NR
Caring Behaviours Assessment Tool
CONNECT instrument
Questionnaire consists of two parts with 17 items each (total 34 items), 5-point Likert scale (‘fully disagree’ to ‘fully agree’)
Correlation with satisfaction, correlations with patient characteristics81 Correlations on subscales by gender
Cronbach’s a (.96); test–retest reliability81
Exploratory factor analysis, criterion validity (patient satisfaction)81
Humanism/faith-hopesensitivity (16), helping/ trust (11), expression of positive/negative (4), teaching/learning (8), supportive/protective/ corrective behaviours (12), human need/ assistance (9), existential/ phenomenological dimensions (3) Biomedical cause (3), patient fault (3), patient control (3), effectiveness of natural treatments (4), meaning (3), preference for partnership (3) Clinical situation (7), personal life situation (4), decisional control over care (6)
NR
Cronbach’s a (subscales from .64 to .83); test–retest stability coefficients80
Face validity, content validity (10 child welfare experts), principal component analysis, criterion validity (IRE measure)80
Correlation with locus of control, quality of life and SF-1286
NR
Cronbach’s a (.96 for total scale, .78–.89 for subscales)82
Cronbach’s a (.65–.89 for subscales)86
Cronbach’s a (part A: .94, part B: .93)10
Face validity, content validity (by experts),85 factor analysis82
Exploratory factor analysis and confirmatory factor analysis, criterion validity (LOC, QOL, SF-12)86
Face validity (four registered clinical nurses), principal component analysis10
NR
Cronbach’s a (.96)
Principal component analysis79
Responsiveness
Mutual problem solving (5), attentive reassurance (5), human respect (5), encouraging manner (6), appreciation of unique meanings (4), healing environment (5), affiliation needs (3), basic human needs (3) Receptivity (9, a ¼ .83), personal responsibility/ reward (9, a ¼ .77), commitment to clients (10, a ¼ .79), professional commitment (7, a ¼ .83), personal attachment (6, a ¼ .64), respect for clients (3, a ¼ .67) Assurance (8), knowledge and skill (5), respectful (6), connectedness (5)
79
Reliability
Validity
Subscale
Time investment for participant (15 min)10
NR
NR
NR
NR
NR
Feasibility
NR ¼ not reported; IRE: Intent to Remain Employed; CARE: Consultation and Relational Empathy; PEI: Perception of Empathy; LOC: Locus of Control; QOL: quality of life; SF: Short Form Health Survey.
Individualized Care Scale
Questionnaire including 24 items, 6-point Likert scale (‘never’ to ‘always’)
Input from nurses, Watson’s theory of transpersonal dimensions
Caring Behaviour Inventory
Questionnaire including 19 items, 6-point Likert scale (‘strongly agree’ to ‘strongly disagree’)
Questionnaire including 44 items, 4-point Likert scale (‘strongly disagree’ to ‘strongly agree’)
Existing questionnaire (Human Caring Inventory–Social Work) based on Noddings’ conceptual model of human caring,96,97 literature review, expert meeting
Human Caring Inventory
Questionnaire including 36 items, 5-point Likert scale (‘never’ to ‘always’)
Description
Existing literature, Watson’s theory of human caring33
Conceptual base and origin
Caring Assessment Tool
Instrument
Table 3. (continued)
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model of practice.91 Videos were viewed and discussed by the authors to enhance reliability; together, the authors constructed the typical situation dynamic. Patient and family shadowing. Patient and family shadowing (PFS) involves having a committed and empathic observer follow a patient and family throughout a selected care experience to view and record the details of the entire care experience from the perspective of the patient and family.89 It is part of patient- and family-centred care (PFCC). Reliability of the method is enhanced by use of a shadowing template. Quantitative instruments Consultation and Relational Empathy (CARE) measure. This questionnaire was developed to measure relational empathy, which is conceptualized as a doctor’s understanding of, and response to, patients’ concerns and fears.92,93 The questionnaire, which is completed by the patient, is based on the existing literature and qualitative interviews with patients. The instrument has 10 items using a 5-point Likert scale from ‘poor’ to ‘excellent’, and no subscale. Cronbach’s a reliability for the global score was .96–.97.74,75 Perception of Empathy Inventory (Revised). This is a questionnaire for measuring the patient’s perception of the nurse’s empathy. Empathy is defined as ‘a process of understanding whereby the nurse enters the client’s perceptual world, the patient perceives this understanding and confirmation of self occurs as part of the process’.76 The instrument is based on an existing questionnaire (Barrett Lennard Relationship Inventory) and existing literature on empathy. The revised version of the questionnaire contains 20 items using a 4-point Likert scale from ‘very true’ to ‘not at all true’. The instrument has two subscales: connectedness (11 items) and confirmation (9 items). Face validity and content validity were examined. Cronbach’s a reliability for the global score was .94.76 Jefferson Scale of Patient’s Perceptions of Physician Empathy (JSPPPE). This scale measures empathic engagement of physicians from the patient’s perspective. It is based on a review of the literature and two existing questionnaires. The instrument has 5 items using a 5-point Likert scale from ‘strongly disagree’ to ‘strongly agree’, and no subscale. Cronbach’s a reliability for the global score was .58. Criterion validity has been established.77 Caring Nurse–Patient Interaction Scale (CNPI) (Short Scale). This self-report questionnaire for nurses was developed to measure the interaction between nurse and patient from a caring perspective. The instrument is based on the existing literature, existing instruments for measuring caring attitudes and Watson’s caring theory.33 The instrument has 4 subscales: humanistic care (4 items), relational care (7 items), clinical care (9 items) and comforting care (3 items), for a total of 23 items using a 5-point Likert scale ranging from ‘not at all competent’ to ‘extremely competent’. Cronbach’s a reliability ranged from .61 for the comforting care scale to .94 for the clinical scale.34 Face validity and content validity were examined for the long scale.30 Caring Assessment Tool (CAT). This tool measures caring behaviours of nurses from the patient’s point of view. It was based on the existing literature and more specifically on Watson’s theory of Human Caring.33 The instrument has 8 subscales: mutual problem solving (5 items), attentive reassurance (5 items), human respect (5 items), encouraging manner (6 items), appreciation of unique meanings (4 items), healing environment (5 items), affiliation needs (3 items) and basic human needs (3 items), for a total of 36 items using a 5-point Likert scale from ‘never’ to ‘always’. Cronbach’s a reliability for the global score was .96.79 Human Caring Inventory (HCI). This is a self-report questionnaire for caregivers to measure human caring. The inventory was derived from an existing questionnaire (HCI–Social Work) based on Noddings’96,97 conceptual model of human caring, a review of the literature and a meeting of experts. The instrument has 6 subscales: receptivity (9 items), personal responsibility/reward (9 items), commitment to clients (10 items), professional commitment (7 items), personal attachment (6 items) and respect for clients (3 items), for a total of 44 items using a 4-point Likert scale ranging from ‘strongly disagree’ to ‘strongly agree’. Face validity and content validity were established. Cronbach’s a reliability ranged from
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.64 for the personal attachment scale to .83 for the receptivity and professional commitment scales. Criterion validity was established.80 Caring Behaviour Inventory (CBI) (Short Form). The questionnaire to measure caring behaviours (both attitude and behaviour) from the perspective of the patient or the nurse was based on the input from nurses and Watson’s theory of transpersonal dimensions. Factor analysis showed 4 subscales: assurance (8 items), knowledge and skill (5 items), respectfulness (6 items) and connectedness (5 items). The instrument contains a total of 24 items using a 6-point Likert scale from ‘never’ to ‘always’. Cronbach’s a reliability for the global score was .96.81 Caring Behaviours Assessment Tool (CBAT). This tool was developed to identify nurses’ behaviours that patients experience as caring. It was based on Watson’s theory of caring.33 The questionnaire contains 63 items using a 5-point Likert scale ranging from little importance to much importance. Factor analysis yielded 7 subscales: humanism/faith-hope-sensitivity (16 items), helping/trust (11 items), expression of positive/negative (4 items), teaching/learning (8 items), supportive/protective/corrective behaviours (12 items), human need/assistance (9 items) and existential/phenomenological dimensions (3 items). Cronbach’s a reliability for the global score was .96.82,85 CONNECT instrument. A tool that measures salient aspects of explanatory models of illness, this instrument was based on a review of the existing literature on explanatory models of illness and 16 qualitative interviews with primary care patients in public and private practice settings. The instrument has 6 subscales: biomedical cause (3 items), patient fault (3 items), patient control (3 items), effectiveness of natural treatments (4 items), meaning (3 items) and preference for partnership (3 items), for a total of 19 items using a 6-point Likert scale from ‘strongly agree’ to ‘strongly disagree’. Cronbach’s a reliability ranged from .64 to .83 for the subscales. Criterion validity was established.86 Individualized Care Scale (ICS). This questionnaire measures how individuality in patient care was supported during specific nursing interventions and how that individuality was perceived during hospitalization. The questionnaire contains two parts, each with 17 items (total 34 items) using a 5-point Likert scale ranging from ‘fully disagree’ to ‘fully agree’. Factor analysis yielded 3 subscales within each part: clinical situation (7 items), personal life situation (4 items) and decisional control over care (6 items). Cronbach’s a reliability for the global score was .94 for part A and .93 for part B. Face validity was established.10
Quality assessment Table 3 and Appendix 3 describe whether aspects of quality were studied for each tool. Quality scores ranged from 1 to 8 (out of 12). Validity. Validity was addressed in some manner for all the quantitative measures, but only for one of the qualitative measures. Nine instruments showed more than one type of validity evidence (CARE, Perception of Empathy (PEI), JSPPPE, CNPI, HCI, CBI, CBAT, CONNECT and ICS). Construct validity was reported for 10 instruments. Exploratory factor analysis was the most frequently reported method (PEI, JSPPPE, CNPI, CAT, HCI, CBI, CBAT, CONNECT and ICS), and confirmatory factor analysis (CNPI, CONNECT) and Rasch analysis (CARE) were less common. Criterion validity was reported for six measures (CARE, PEI, JSPPPE, HCI, CBI and CONNECT). Face and/or content validity were evaluated for six instruments by a panel of experts (PEI, CNPI, HCI, CBAT and ICS) and/or patients (CARE and PEI). Reliability. Reliability data were presented for all measures (Table 3). Internal consistency was the most frequently used method, reported for all 10 quantitative instruments, and was usually high (Cronbach’s a
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approximately 0.70) except for the total scale JSPPPE (.58) and subscales of the HCI and CONNECT. Test– retest reliabilities were reported for two measures (CBI and HCI). For the qualitative measures, strategies to enhance reliability were described, using prompts, audio-recording the interview and returning transcripts to participants for comment, discussion about interpretation between authors and use of a shadowing template. Responsiveness. An assessment of responsiveness was conducted for five instruments. Two instruments (CBAT and CBI) describe tests for differences between individuals. Four instruments (CARE, PEI, CBI and CONNECT) describe factors associated with good outcome. User-centredness. Patients were involved to test face and/or content validity for two quantitative instruments (CARE and PEI). User views were taken into account in initial item generation for two quantitative instruments (CARE and CONNECT). Patients were involved in developing the material for one qualitative instrument – Emotional touch point method (ET). An initial pool of items was normally generated based on literature or existing theoretical models, including Watson’s theory of caring (CBAT, CBI, CAT and CNPI), Noddings’ model of human caring (HCI) and literature on explanatory models (CONNECT) of illness and (relational) empathy (PEI, JSPPPE and CARE). Sample size. All quantitative instruments were tested with a sample size that was suitable for factor analysis based on Kass and Tinsley’s98 guideline for a ratio of 5 to 10 participants per item, up to about 300 participants. If the number of participants reaches up to 300, test parameters tend to be stable regardless of the subject-to-variable ratio. The sample size of seven instruments (CARE, CNPI, CAT, HCI, CBI and CONNECT and ICS) was high (i.e. above 300) and for three instruments (PEI, JSPPPE and CBAT) it was sufficient (between 5 and 10 participants per item). Feasibility. Reported time taken for completion was available for three measures (ICS, JSPPPE and ET). Information regarding costs and training needs or instructions (e.g. how to complete the questionnaire) was not reported for any of the studied instruments.
Comment The purpose of this study was to find existing instruments or methods to measure quality from a care ethical perspective and to examine the evidence of their psychometric properties, feasibility and responsiveness. To our knowledge, we are the first to systematically review the literature for this purpose. We identified 55 studies describing 40 instruments and mapped these instruments to elements of an attempted conceptual framework. A total of 13 instruments which reflected essential parts of ethics-of-care theory were studied in more detail, and a quality assessment was conducted. Our search strategy produced many (3427) hits. Because no clear search terms were available, a broad strategy consisting of concepts related to non-instrumental quality aspects was devised with the help of an experienced librarian, and six databases were used. One of the main limitations of a systematic review is the potential omission of relevant articles. The care ethical perspective on quality of care is a complex concept, and therefore, coming to conceptual clarity and formulating strict inclusion and exclusion criteria appeared to be not easy. This may have led to a slightly subjective selection of studies and instruments, although two authors (E.K. and G.H.) independently decided on the selection, and a third author (A.G.) was consulted in case of doubt. Second, the exclusion of non-English publications and instruments for specific populations may have led to omission of some relevant instruments. The conceptual framework was an attempt to bridge the epistemological dissimilarities between ethics of care and quality of care. We made the assumption that it is possible to distinguish between various
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conceptual elements related to quality from a care ethical perspective and to facilitate the ‘grouping’ of available instruments measuring different conceptual categories. We do not want to assume causality between the different elements, as possibly the elements are otherwise related. To verify our line of thought, the conceptual framework was discussed with care ethicists in a focus group, and approval was given. While working with the framework, we found it to be useful for its purpose. But we realize this is a first step in an unknown field. Maybe it is not possible to bridge the epistemological gap in the way we assume. In the future, more research is needed to see whether the operationalization chosen is feasible. It was possible to map instruments to different elements using the framework. Of the 40 identified instruments, 17 assess antecedents of the therapeutic relationship and 10 measure the therapeutic relationship. From a care ethical perspective, the relationship is important, but from a measurement perspective, it is considered no more than a proxy. It enables us to identify what is at stake and what kind of care can be provided, as Schuijt29 says. A total of 10 instruments could be used to ‘search for the logic of the patient’. These quantitative instruments, which often use categories, could help caregivers to search for the logic of the patient and what the patient wishes or needs and to broaden the perspective on quality of care. In the end, instruments are needed that take the specific context into account. Yet, we found only three (qualitative) instruments which could be used to assess (mis)fit, our most promising element. An advantage of choosing (mis)fit is that the logic of the patient can be followed maximally. A disadvantage of the choice to assess (mis)fit is that it is very time consuming to conduct measurements with a large sample size, making it difficult to generalize the findings. Our study shows that quantitative measurements in large sample sizes will not be able to address quality from a care ethical perspective. The advantage lies in the fact that professionals will become more aware of the perspective of the patient and will become more attuned to searching for what is at stake for the other and what he or she wishes or needs in each unique situation. The instruments’ quality scores vary considerably. Validity was reported for all the quantitative measures, but only for one of the qualitative measures. Reliability data were presented for all measures, with reliability being moderate to high in general. Sample size was sufficient to high for all instruments, except one. Evidence for the other criteria of the quality assessment is less extensively reported. Assessment of responsiveness was reported for five instruments: four instruments take user-centredness into account and three measures report on average completion time. Information regarding costs, training needs and instructions or explanations for non-response was not reported for any of the studied instruments. The method of scoring the quality of studies was subjective, and so caution is needed when interpreting the quality scores. To overcome this limitation and to increase reliability, two authors (E.K. and G.H.) independently scored the quality. In the Netherlands, there is a growing interest in the care ethics perspective on the part of care institutions that are not satisfied with quality measurements and policy of the past years. Measuring quality from a care ethical perspective could help to highlight an important and subtle dimension of care related to the extent that a person feels acknowledged. Being able to measure these subtle aspects of quality of care could help create a sense of urgency to define and include subtle experiences of the essence of caring from the patient’s perspective. Furthermore, instruments could be used to develop new quality indicators, and future research results could contribute to the improvement of care practices. In this review, we provide an overview of instruments for measuring quality from a care ethical perspective. We hope to provide relevant information to researchers who are interested in this topic and look forward to debate and future studies in this field, aimed at improving quality of care. The main implementation challenge remains to do justice to individual, contextual and emotion-based information in (n ¼ 1) situations and find a way to assess whole departments. Helping caregivers develop and cherish their ‘eye’ for the logic of the vulnerable other seems the way. Conflict of interest The authors declare that there is no conflict of interest.
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Funding This research received money from the CZ foundation (an independent foundation which receives money from the Dutch health care insurance company CZ). References 1. Aiken LH, Sermeus W, Van den Heede K, et al. Patient safety, satisfaction, and quality of hospital care: cross sectional surveys of nurses and patients in 12 countries in Europe and the United States. BMJ 2012; 344: e1717. 2. Institute of Medicine. Crossing the quality chasm: a new health system for the twenty-first century. Washington, DC: National Academies Press, 2001. 3. Hughes RG. Patient safety and quality: an evidence-based handbook for nurses. Rockville, MD: Agency for Healthcare and Quality, 2008. 4. Gandjour A, Kleinschmit F, Littmann V, et al. An evidence-based evaluation of quality and efficiency indicators. Qual Manag Health Care 2002; 10(4): 41–52. 5. Mainz J. Defining and classifying clinical indicators for quality improvement. Int J Qual Health Care 2003; 15(6): 523–530. 6. Varkey P, Reller MK and Resar RK. Basics of quality improvement in health care. Mayo Clin Proc 2007; 82(6): 735–739. 7. Glen S. Emotional and motivational tendencies: the key to quality nursing care? Nurs Ethics 1998; 5(1): 36–42. 8. Berwick DM. A user’s manual for the IOM’s ‘Quality Chasm’ report. Health Aff 2002; 21(3): 80–90. 9. Van Dishoeck AM, Lingsma HF, Mackenbach JP, et al. Random variation and rankability of hospitals using outcome indicators. BMJ Qual Saf 2011; 20(10): 869–874. 10. Berg A, Suhonen R and Idvall E. A survey of orthopaedic patients’ assessment of care using the Individualised Care Scale. J Orthop Nurs 2007; 11(3–4): 185–193. 11. Goodrich J and Cornwell J. Seeing the person in the patient: the point of care review paper. London: The King’s Fund, 2008. 12. Vosman F and Baart A. Relationship based care and recognition. Part two: good care and recognition. In: Leget C, Gastmans C and Verkerk M (eds) Care, compassion and recognition: an ethical discussion. Leuven: Peeters, 2011, pp. 200–227. 13. Zandbelt LC, Smets EMA, Oort FJ, et al. Coding patient-centred behaviour in the medical encounter. Soc Sci Med 2005; 61(3): 661–671. 14. Kjeldmand D, Holmstro¨m I and Rosenqvist U. How patient-centred am I? A new method to measure physicians’ patient-centredness. Patient Educ Couns 2006; 62(1): 31–37. 15. Clayton MF, Latimer S, Dunn TW, et al. Assessing patient-centered communication in a family practice setting: how do we measure it, and whose opinion matters? Patient Educ Couns 2011; 84(3): 294–302. 16. Hudon C, Fortin M, Haggerty JL, et al. Measuring patients’ perceptions of patient-centered care: a systematic review of tools for family medicine. Ann Fam Med 2011; 9(2): 155–164. 17. Barnes M. Care in everyday life: an ethic of care in practice. Bristol: Policy Press, 2012. 18. Elwyn G, Edwards A, Wensing M, et al. Shared decision making: developing the OPTION scale for measuring patient involvement. Qual Saf Health Care 2003; 12(2): 93–99. 19. Sulmasy DP. The varieties of human dignity: a logical and conceptual analysis. Med Health Care Philos. Epub ahead of print 27 March 2012. DOI: 10.1007/s11019-012-9400-1. 20. Teague GB and Caporino NE. Patient perceptions of care measures. In: Rush AJ Jr, First MB and Blacker D (eds) Handbook of psychiatric measures. 2nd ed. Arlington, VA: American Psychiatric Publishing, Inc., 2008, pp. 163–191. 21. Gilligan C. In a different voice: psychological theory and women’s development. Cambridge: Harvard University Press, 1982.
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Appendix 1 Search strategy PubMed (1990–2012) Hits: 1349 ((((((((patient-centered care[Mesh])) OR (empathy[Mesh])) OR (attitude of health personnel[Mesh]))) OR (((((((((((((((((((((((patient-cent*[tiab])) OR (person-cent*[tiab])) OR (loving care[tiab])) OR (empath*[tiab])) OR (compassion*[tiab])) OR (humane*[tiab])) OR (therapeutic relationship[tiab])) OR (dignity[tiab])) OR (affection*[tiab])) OR (appropriate care[tiab])) OR (devotion[tiab])) OR (benevolence[tiab])) OR (vulnerable patient[tiab])) OR (caring relationships[tiab])) OR (patience[tiab])) OR (attentiveness[tiab])) OR (responsive care[tiab])) OR (mutuality[tiab])) OR (courtesy[tiab])) OR (relationship based[tiab]))) AND (care*[ti] OR caring[tiab])))) AND ((((psychometrics[Mesh])) OR (qualitative research[Mesh])) OR (Efficacy[tiab] NOT self-efficacy[tiab]))) AND (((((((((patient relation*[tiab])) OR (patient connection[tiab])) OR (patient alliance[tiab])) OR (therapeutic connection[tiab])) OR (therapeutic relation*[tiab])) OR (therapeutic alliance*[tiab]))) OR (((professional-patient relations[Mesh])) OR (hospital-patient relations[Mesh])))
Appendix 2 Table 4. The six criteria for quality appraisal of the included instruments. Score Criteria
Description
Validity
Face/content validity, construct validity and criterion validity Internal consistency, stability and equivalence
Reliability
0
1
2
Low Not reported
Modest One type of validity
High Two types of validity
Low* None or one type of reliability
Modesty One type of reliability
Highy Two or more types of reliability (continued)
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Table 4. (continued) Score Criteria
Description
Responsiveness
The ability of a questionnaire to detect clinically important changes over time (tests for differences between individuals, factors associated with good outcome and treatment effect from group differences) Whether and how to take users’ views into account in the development of the instrument
Usercentredness
Sample size
Feasibility
0
Number of participants (n) who participated in the study by receiving and completing the questionnaire suitable for factor analysis Whether the questionnaire is easy to complete or widely used, time investment, costs, non-response evaluation
1
2
None
Sensitive One type of test
Highly sensitive Two or more types of tests
Take no account of users’ perceptions
Listen to users’ views, but not ask them about how items should be defined or altered Modest n per item of the questionnaire >5 and
