Elsevier

Social Science & Medicine

Volume 51, Issue 5, 1 September 2000, Pages 657-668
Social Science & Medicine

Concepts of trust among patients with serious illness

https://doi.org/10.1016/S0277-9536(00)00014-9Get rights and content

Abstract

This paper examines conceptions of trust among three groups of respondents diagnosed with either breast cancer, Lyme disease or mental illness. Interviews were carried out using an open-ended interview guide to explore how patients made assessments of trust in their doctors and health care plans. The guide followed a conceptual approach that asked questions about competence, agency/fiduciary responsibility, control, disclosure and confidentiality. Respondents were given ample opportunity to raise other areas of concern. The data were organized using the NUDIST© software package for the analysis of non-numerical and unstructured qualitative data. Patients viewed trust as an iterative process and commonly tested their physicians against their knowledge and expectations. Interpersonal competence, involving caring, concern and compassion, was the most common aspect of trust reported, with listening as a central focus. Most patient comments referred to learnable skills and not simply to personality characteristics. Technical competence also received high priority but was often assessed by reputation or interpersonal cues. Patients were much concerned that doctors be their agents and fight for their interests with health care plans. Disclosure and confidentiality were less common concerns; most patients anticipated that doctors would be honest with them and respect their confidences. Patients’ responses also appeared to vary by their disease, their socio-demographic characteristics, their involvement with self-help groups, and how their illness conditions unfolded.

Section snippets

Exploratory study design

In this study we interviewed 90 patients, 30 each from three illness groups: breast cancer, chronic Lyme disease, and mental illness. Each of these illnesses is characterized by its severity and the uncertainty of its prognosis, characteristics that we believe are likely to contribute to intense relationships with physicians and increase the saliency of trust in the relationship. The breast cancer subjects were all recruited from a treatment/research center that exclusively treats cancer

Socio-demographic characteristics of subjects

Due at least in part to the different contexts from which they were recruited, the three groups differed significantly in their demographic characteristics (see Table 1). These differences probably contributed to some of the variations in their views on trust. All breast cancer patients were female; in the Lyme disease group, twenty-five of the thirty respondents were female; and fourteen, a significantly lower number, of the patients with mental illness were female. In terms of age, subjects

Biases

There are several biases inherent in this study. First, the three samples were recruited from different clinics and patient self-help groups and are not representative of all such patients. For example, members of self-help groups are self-selected and tend to be more involved and vocal than patients generally. Since recruitment differed by group, comparisons across groups may reflect such differences. Second, the interview schedule followed a conceptual view of trust that helped frame the

Dimensions of trust

Our interview guide asked questions about the five dimensions of trust derived from our conceptual approach: competence (technical and interpersonal); fiduciary responsibility and agency; control; disclosure; and confidentiality (Mechanic, 1998a, Mechanic, 1998b). The interviews enhanced our understanding of how patients construed these varying areas and how interpretations may differ among different patient groups. In addition, other dimensions of trust became apparent as the interviews were

Major differences among illness groups

There were some noteworthy differences among the three patient groups in the emphasis placed on different aspects of trust, as can be seen in Table 2. As noted in the previous discussion of the study design, the different means by which each group was recruited could account for some of the differences found. Further, the groups’ demographic characteristics are dissimilar which could also contribute to appreciable differences, as discussed below. Despite these potential biases, it appears that

Differences by patient characteristics

Clearly, the differences among groups are likely to have contributed to the variation in the type of comments and the relative frequency with which different aspects of trust were mentioned by each group, as was illustrated in Table 2, and this should be considered when viewing the study results. That the thirty patients with mental illness had substantially less to say overall (5642 total phrases for their interviews as opposed to 6371 and 6962 total phrases for the breast cancer and Lyme

Discussion and conclusions

There are tangible clinical, economic, and ethical consequences when trust is undermined. A major way of countering this and building patient trust is to provide opportunities for patients to select their health plans and physicians (Kao et al., 1998a, Kao et al., 1998b). The market transformations brought about by more restricted choices and the growth of more rigorous managed care affect patient trust. In respect to the former, almost half of employees in large firms and four-fifths of

Acknowledgements

This article was supported, in part, by an Investigator Award in Health Policy Research from the Robert Wood Johnson Foundation.

References (27)

  • S. Robinson et al.

    Understanding the quality challenge for health consumers: The Kaiser/AHCPR study

    Journal of Quality Improvement

    (1997)
  • L.A. Anderson et al.

    Development of the trust in physician scale: A measure to assess interpersonal trust in patient-physician relationships

    Psychological Reports

    (1990)
  • B. Barber

    The logic and limits of trust

    (1983)
  • R. Blendon et al.

    Understanding the managed care backlash

    Health Affairs

    (1998)
  • R.J. Blendon et al.

    Bridging the gap between expert and public views on health care reform

    Journal of the American Medical Association

    (1993)
  • Chronic fatigue syndrome

    (1993)
  • A. Coulter et al.

    Sharing decisions with patients: is the information good enough?

    British Medical Journal

    (1999)
  • R.M. Frankel et al.

    The four habits of highly effective clinicians: A practical guide

    (1996)
  • J.R. Gabel et al.

    Small employers and their health benefits, 1988–1996: An awkward adolescence

    Health Affairs

    (1997)
  • J.H. Hibbard et al.

    Informing consumer decisions in health care: implications from decision-making research

    Milbank Quarterly

    (1997)
  • A.C. Kao et al.

    Patients’ trust in their physicians: Effects of choice, continuity, and payment method

    Journal of General Internal Medicine

    (1998)
  • A.C. Kao et al.

    The relationship between method of payment and patient trust

    Journal of The American Medical Association

    (1998)
  • N. Luhmann

    Trust and power

    (1989)
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