Can I trust thee? Self-management, trust and ... - CSIRO Publishing

Can I trust thee? Self-management, trust and evaluation in chronic disease Rae Walker School of Public Health, La Trobe University

In this paper trust is viewed as a major issue in the relationship between consumers and providers of health care to people living with chronic diseases. The qualities of trust-based relationships are identified and their relevance to chronic disease self-management discussed. Finally, it is argued that an appropriately conceptualised approach to trust should be included in service evaluations as a means of improving the quality of the relationship between consumers and health care providers. Key words: Trust, Self-management, Primary Care

In this paper I argue that trust in the relationship between consumers and health care providers is an important element in chronic disease selfmanagement, and that it is an issue for program evaluators to systematically address. Evaluation, in this context, is a way of promoting change and improvements in quality of services. A brief consumer story can illustrate the link between trust and evaluation. This is an abbreviated version of real events impacting on a real consumer with a chronic disease. There is a particular service that a consumer needed to attend regularly. Over a number of years this was a consistently awful experience. The providers were distant in their relationship with the consumer at best, and outright insulting at worst. The attitude that consumers were stupid, incompetent and a nuisance appeared to be the norm. This particular consumer was very fortunate to also work with a health care provider who was very good at managing relationships with consumers. Problems with the first service was an issue that regularly arose during consultations. These conversations can be represented in the following way. P: What has been happening with ..............service? C: They have been awful because.............. P: Have you made a formal complaint? They need evidence if they are to review their performance. C: No, it is a waste of time. Their attitude says they would use it against me. P: Perhaps I could encourage the organisation to undertake a consumer satisfaction survey to get evidence? 34

C: OK! You do it but keep me out of it so as not to make matters worse!

Underlying this story is the problem of distrust that inhibits the identification and resolution of problems a consumer faces. The consumer’s voice is silent because of distrust, and he or she may consequently be passive when self-management requires the opposite. Trust is a complex and difficult issue but one that is very important in chronic disease self-management. I want to explore this idea of trust. But first, I want to say something about framing chronic disease self-management as self-help. Chronic disease self-management There are a variety of approaches to organised chronic disease self-management. In Australia a traditional approach has been through self-help, or mutual support, groups (Health Issues Centre, 1991). A different, but related, approach is through chronic disease self-management programs (Lorig et al., 2000). Richardson (1991, p.467) describes organised self-help as groups of people who “share a common problem and come together to do something about it”. Members of self-help groups describe themselves as “people who speak or help collectively or individually on their own behalf” or “people who share a common condition and give each other support” (Health Issues Centre, 1991, p.12). Richardson (1991), in a review of how self-help groups contribute to coping with disease, argues that self-help groups are particularly appropriate for people who have a chronic condition. In dialogue with other people who share the same Australian Journal of Primary Health — Vol. 9, Nos. 2 & 3, 2003

Can I trust thee? Self-management, trust and evaluation in chronic disease

condition, self-help group members learn about symptoms and disease management. They also explore the new identity that comes with it. They learn how others have managed changes in lifestyle and living conditions and what to expect of the future. Self-help groups have many links to other parts of the health system. Some links are formal, for example, representation on committees or working groups, others are informal, for example, providing assistance on projects or exchange of information with professionals or agencies (Health Issues Centre, 1991). Yet other links are through self-help group members themselves working with health care providers in the management of their condition. In each relationship trust is an important issue. Increasingly, the relationships created by the links between consumers and providers are described as partnerships (Acute Health, 2000, p.2). The partnership may be between individual consumers and providers, or between consumers and provider organisations. Partnership development implies changes to communication, professional practices and power relationships between consumers and providers (Ovretveit, 1993, p. 165). For consumers, partnership implies a change from dependence on professional help to a relationship of interdependence with providers. One should never assume these changes are easy to make. A key issue in the development of a partnership between consumers managing a condition and health care providers is trust, or as it is often argued in the literature, distrust (Lenrow & Burch, 1981). In recent years the idea of consumers sharing and learning jointly has become for malised in chronic disease self-management courses, in which groups of consumers with chronic diseases work through a program of facilitated learning over a period of weeks (Lorig et al., 2000). These programs assist consumers to manage the illness, carry on with normal activities, and to cope with emotional changes associated with the illness (Lorig et al., p.13). Communication between consumers and health care providers is a critical aspect of their relationship and one intimately connected to the experience of trust in providers. Goold (2002, p.79), citing Keating et al. (2002), argues that there is convincing evidence that “negative experiences, Australian Journal of Primary Health — Vol. 9, Nos. 2 & 3, 2003

particularly those related to communication, lower trust in primary care physicians”. De Bono (1981, p.147) depicts communication as being nested within concentric layers of meaning constituting a “field of communication”. People make choices about how far they will reach into this field of meaning to assist in any communicative encounter. Typically, people with chronic conditions who engage in self-help are concerned with the expanded field of communication about a condition. The value for consumers involved in self-help is in the scope, in understanding the breadth and depth of influence chronic disease has on the life of a human being. Professional communication is often more limited in scope, focussing on specific aspects of a condition. Furthermore, communication with providers may not always demonstrate the respect, values and motivations typically appreciated by consumers (Goold, 2002). Respect, values and motivation are all aspects of relationships in which people may, or may not, experience trust. This point is discussed further below. Tr u s t There is a substantial literature addressing the issue of trust between consumers and providers of health care, some of which is cited below. The importance of trust to consumers varies depending upon the consumer’s circumstances, her/his perception of risk, characteristics of an illness and the needs it creates, and the consumer’s “sophistication and access to information” (Mechanic & Meyer, 2000, p.667). There is very little, if any, literature on health care provider trust in consumers. There is evidence, usually in relation to physicians, that trust in a consumer/provider relationship improves consumer satisfaction with care, decreases emotional distress (Keating et al., 2002, p.29), increases acceptance of medical advice (Gray, 1997, p.34: Thom et al., 1999) and is central to ethical medical practice (Gray, p.34, Goold, 2002, p.79; Kao, Green, Davis, Kopland & Cleary, 1998a, p.681). Distrust in a consumer/provider relationship may lead to consumers: changing physicians and fracturing continuity of care (Keating et al., 2002, p.29; Mechanic, 1998, p.665); withholding information about risk behaviours such as noncompliance with medication regimes and substance abuse that may be disapproved of (Mechanic & Meyer, 2000, p.665); non-compliance with medical 35

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advice and the use of false names when attending for treatment (Mechanic, pp. 665 & 672). Trust is studied from many perspectives and cannot be considered to be only an attribute of individuals. There is an extensive literature on the psychological qualities of people who trust and are trusted. However, Luhmann (1979, p.6) argues that “trust occurs within a framework of interaction which is influenced by both personality and social system, and cannot be exclusively associated with either”. Trust is both a quality of individual(s) and of the social system that provides their context. Anthony Giddens (1990, p.34) offers a useful general definition of trust: Trust may be defined as confidence in the reliability of a person or system, regarding a given set of outcomes or events, where that confidence expresses a faith in the probity ... of another, or in the correctness of abstract principle (technical knowledge)

For a consumer, trust is about accepting the risk that a health care provider will actually help with the diagnosis and management of a condition. Among other things, that trust is based on the professional competence of the provider and his/ her “integrity and motivation” to act in the best interests of the client (Govier, 1997, p.80). From a social perspective trust is fundamentally about expectations of the future based on experience of the past (Barber 1983; Luhmann, 1979; Zaheer, McEvily & Perrone, 1998). In this way uncertainty about, and complexity of, the future is decreased (Luhmann 1979). When expectations are violated, in ways the trustee considers serious, trust is experienced as “broken” and distrust develops. Distrust is not only a consequence of the violation of expectations. Luhmann (1979) argues that distrust can also be understood as an independent but parallel construct to trust. People who are oriented to trusting others are likely to take the stance of trusting until evidence of untrustworthiness becomes apparent. People who are oriented to distrusting others will take the opposite stance and distrust until evidence of trustworthiness emerges (Govier, 1997). Dimensions of trust Trust is a multi-faceted concept. Adler (2001, p.218) argues that trust has four dimensions—sources, mechanisms, objects, and bases. Each dimension has a number of components. 36

The source of trust dimension has three components—repeated interaction, calculation of interest, and shared norms and values. If multiple interactions with a person or organisation demonstrate the aspects of trust found in Gidden’s (1990) definition, it is likely that trust will develop between consumer and provider of a service. An alternative source of trust is the calculation that it serves a person’s interest to trust, perhaps because that organisation or service provider are the only ones available. Finally, people who share the same norms and values may use this as the foundation of their trust. For a consumer, the sharing may have its origins in culture, or life experience, shared with a provider. Mechanisms for the deciding to trust dimension also has three components—personal contact, reputation, and institutional context. The development of a personal relationship between provider and consumer is a common way of building trust. However, in the case of a new provider, and the absence of direct experience of trustworthiness, the decision to trust may be based on the reputation of the provider with people who are known and trusted, perhaps a general practitioner, a friend, or a fellow member of a selfhelp group. Finally, if an organisation or institution is known to require trustworthy behaviour from its members, then that requirement may be the mechanism to gain the trust of consumers. For example, patients in a hospital observe what happens to, and between, other people and use this information in deciding whether or not to trust in the care they receive (Walker, Brooksby, McInery, & Taylor, 1998, p.198). The objects of tr ust dimension has three componentsˆindividuals, organisations, or systems. We may place our trust in individual people. We may trust organisations such as a hospital, or a system such as Medicare. People with a chronic disease are frequently in the position of having to choose to trust individual service providers, service organisations and systems of care to meet daily health maintenance needs (Goold, 2002, p.79). However, when there is a need to trust because there is no alternative way of obtaining a service, we must always ask, “Is what we experience trust or the exercise of power over a dependent person?”. Finally, the bases of trust dimension has multiple components. The bases of trust are the “features Australian Journal of Primary Health — Vol. 9, Nos. 2 & 3, 2003


of those objects in which we feel trust” (Adler, 2001, p.218). In regard to medical practitioners, a number of relationship qualities have been identified as providing the bases of trust. Examples are summarised in Table 1 below. It is not so clear what the bases of trust in organisations and systems are for consumers with chronic conditions. Trust always implies that someone is confident in the face of risk (Sydow, 1998). Edward de Bono depicts the sort of risk a consumer takes in trusting health care providers as a table top—trust rests on supportive legs—the bases of trust (De Bono, 1981, p.149). The structure is stable until something shakes the table and the whole lot tumbles down. The structure is vulnerable. When a consumer trusts a health care provider (individual, organisation or system) the relationship is similarly vulnerable (Axelrod & Goold, 2000, p.57). A good shake on the pillars or bases of trust supporting the relationship can make it collapse. Managing trust Mechanisms for dealing with the vulnerability of consumers in trust-based relationships include rules and regulations around informed consent; ethics committees to oversee complex decisions; monitoring boards and agencies to scrutinise professional competence; continuing education requirements; complaints officers to mediate disputes; and so on (Govier, 1997). These are mechanisms for managing distrust. As useful as they are, they do not eliminate the need for trust. For consumers, trust in health care providers and their organisations is risky, but it is also necessary. Goold and Klipp (2002, p.882) found, in a qualitative study of consumers’ trust in managed care arrangements, that a key source of trust is a long-standing and successful relationship with their physician. Goold and Klipp also noted the

importance of qualities of the physician and of the physician/consumer relationships including competence, advocacy for the consumer especially at times of vulnerability, effective communication, caring, compassion and respect (Goold & Klipp, p.882). These aspects of the relationships are the bases of trust. By strengthening the bases of trust in provider/consumer relationships between individuals and in institutional rules, norms and practices, trust itself can be managed. The mechanisms for managing distrust then become “fail-safe” devices. There is no single, widely adopted, set of variables called “the bases of trust”. However, researchers in diverse social sectors identify similar lists of variables. For example, Ring (1997, p.124) identifies the “factors associated with reliance on trust” in inter-organisational partnerships; Pearson and Raeke (2000, p.509) identify the “most commonly described dimensions of physician behaviour on which patients are believed to base their trust”, and Axelrod and Goold (2000, p.57) describe the expectations patients have of physicians that, when satisfied, lead to trust. The variables identified by each of these authors are identified in Table 1 below. The lists contain similarities that are striking although different words are used to describe similar constructs. Commonalities include: * professional (functional) competence; * interpersonal competence including communication that is open and effective, caring and compassion; * beneficence or the obligation to help which may be described as goodwill or advocacy at times of vulnerability; •

particular norms and values which may be

Table 1: Aspects of relationships in which people trust - bases of trust Ring (1997, p.124) • business sense (i.e., health care sense) • consistency of behaviour • availability • predicability • accessibility • functional competence • judgement • integrity • loyalty • discretion • motives • interpersonal competence • openness

Axelrod & Goold (2000, p.57) • goodwill & beneficience • advocacy for the patient • competence • honesty • openness • compassion • integrity • effective communication

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Pearson & Raeke (2000, p.509) • competence • compassion • privacy • confidentiality • reliability • dependability • communication

Goold & Klipp (2002, p.882) • competence • advocacy for the consumer at times of vulnerability • effective communication • caring • compassion • respect

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expressed as integrity, confidentiality, privacy, discretion, honesty; •

Table 2: Trust in Physician Scale Aspect of Scale

Trust in Physician Scale

Aspect of trust

An established interpersonal relationship. Measures dependability in looking out for patients’ interests (patient advocate), confidence in knowledge and skills (competence), confidentiality and reliability of information

Number of items

11

Scale

5-point Likert-type scale

Reliability

Cronbach Alpha 0.9 in study 1, 0.85 in study 2

ser vice qualities that may be expressed as reliability, dependability and predictability.

Although the bases of trust can be considered characteristics of individuals they are also influenced by the rules and routines, norms and beliefs that constitute the institutional qualities of the organisations that employ individuals. Tr ust and evaluation Chronic disease self-management involves relationships with multiple health care providers over a long period of time. A partnership relationship between consumer and provider around the long-term management of a condition is likely to support effective self-care (Safran et al., 1998). Within that relationship trust is a key element. Relationships between service providers also impact on consumers requiring services from multiple agencies. Organisations that support partnership arrangements between consumers and providers of care, and between provider agencies, are likely to demonstrate institutional qualities supportive of effective, long-term, self-care. The evaluation of services for people with chronic diseases should examine the partnership component of self-management. Within that, trust and its supporting bases are fundamental. Evaluation, in this context, is a means of making change to strengthen the support for selfmanagement in the health system. The problem of evaluating the trust component of partnership arrangements between consumers and health care providers is, at the present time, more a problem of conceptualising trust and valuing it, than one of research methodology. There are research tools available for this task (Goold, 2002). None are perfect but all are useful. Four trust measurement scales used for research in primary health care are briefly described below.

Construct validity Validated against Multidimensional Health Locus of Control Scales, Multidimensional Desire for Control scales, Medical Interview Satisfaction Scale Administration

•

The Primary Care Assessment Survey (PCAS) consists of 51 questions organised into 11 scales measuring 7 domains of medical primary care service provision (Safran et al., 1998). One of these domains is trust. An established relationship means a “patient’s regular personal doctor” (Safran et al., p.729).

Table 3: Primary Care Assessment Survey Aspect of Scale

Primary Care Assessment Survey - trust scale

Aspect of trust

An established interpersonal relationship. Measures integrity, competence, role as the patient’s advocate

Number of items

8

Scale


Reliability

Cronbach Alpha 0.86

Construct validity na Administration

•

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The first tool developed for measuring trust in the consumer/clinician relationship is the Trust in Physician Scale developed by Anderson and Dedrick (1990). The Trust in Physician Scale was designed to evaluate a consumer’s interpersonal trust in his/her primary care physician in the context of chronic disease management (Anderson & Dedrick, 1990, p.1092; Thom et al., 1999).

Written self-administered

The Patient Trust Scale was developed to measure the “determinants of trust” in physicians in the context of managed care in the United States of America (Kao et al., 1998a, 1998b). Many of the items are specific to treatment decisions in the managed care context.

Table 4: Patient Trust Scale Aspect of Scale

•

Interviewer administered

Patient Trust Scale

Aspect of trust

Interpersonal relationship in the context of managed care. Not necessarily an established relationship. Measures competence, confidentiality, dependability in looking out for patients’ interests (patient advocate) in managed care context. Number of items 10 Scale 5-point Likert-type scale Reliability Cronbach Alpha 0.94 Construct validity na

Administration

Telephone interview



•

The Trust Evaluation Scale was developed to measure tr ust between providers of primar y health care when consumers receive services from multiple providers. The Scale has two parts. The first measures the bases of trust between individual providers (interpersonal trust), the second measures generalised experience of the focal agency (interagency trust [Walker & Bisset, 2003]).

Table 5: Trust Evaluation Scale Aspect of Scale

Trust Evaluation Scale

Aspect of trust

Bases of trust in interpersonal and interagency relationships

Number of items

Part 1 10 items, Part 2 16 items

Scale


Reliability

For different sections of the Scale Cronbach’s Alpha ranged from 0.87 - 0.94

Construct validity Validated against an instrument of similar structure measuring trust per se (Zaheer et al., 1998). For different sections of the Scale Pearsons ‘r’ ranged from 0.6-0.73 Administration

Self-administered

The first three scales were developed, and have been used, for studies of trust in the patient physician relationship. The first three scales measure some bases of trust but not a complete set identified by any of the authors featured in Table 1 above. Nor do they appear to have been validated against another measure of trust. The Trust in Physician Scale measures many of the bases of trust but does not include items on privacy, respect, and compassion. Although the PCAS trust scale measures a limited number of bases of trust, when used with the PCAS communication and interpersonal treatment scales most of the bases of trust identified by Pearson and Raeke (2000) and Goold and Klipp (2002), summarised in Table 1, are addressed. Both of the first two scales could be used in the Australian context. The third, the Patient Trust Scale,

is specific to the American managed care context, making it unsuitable for use in Australia. However, all of these scales would need to be modified for use with clinicians other than physicians. The Trust Evaluation Scale is quite different from the others. It was designed to measure the bases of trust between ser vice providers in a multidisciplinary primary health care system. It is a service improvement tool to strengthen the interagency relationships that underpin provision of integrated care to people with chronic or complex conditions. The Trust Evaluation Scale measures the bases of trust between providers in the service system. These relationships constitute a context for people with chronic disease. Conclusion Health care providers have an important role in supporting effective self-management of chronic diseases. When the key to supportive relationships is conceptualised as trust in provider, and providers in each other, and the concept of trust is explored, one begins to define the qualities of relationships that provide the bases for trust. Focusing on the bases of trust leads to the clarification of the qualities of the consumer/provider relationship, and of the systems in which those relationships are embedded. Inclusion of a trust perspective in service evaluation would support the development of more effective self-care of chronic disease. The tools for measuring trust are varied. At least one of those reviewed is context-specific and unsuitable for use in this country. Others are relevant to the Australian context but are specific to consumer/physician relationships and need adaptation for use in a multidisciplinary primary care system. The final scale reviewed focuses on relationships between providers that underpin a system of integrated primary health care.

Acknowledgment This paper is based on a presentation made to the Chronic Disease Self-Management Conference, Sydney 2000. References Acute Health. (2000). Communicating with consumers: Good practice guide to providing information. Melbourne: Department of Human Services. Adler, P. S. (2001). Market, hierarchy, and trust: The knowledge economy and the future of capitalism. Organization Science, Vol. 12, pp. 215-234. Anderson, L.A., & Dedrick, R.F. (1990). Development of the Trust in Physician Scale: A measure to assess interpersonal trust in patient-physician relationships. Psychological Reports, 67, 1091-1100.


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Correspondence to: Rae Walker School of Public Health La Trobe University Victoria 3086 AUSTRALIA Email: [email protected]

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