Health care professional support for self-care management in chronic illness: insights from diabetes research

https://doi.org/10.1016/S0738-3991(00)00095-1Get rights and content

Abstract

While it has long been recognized that health care professionals play an important role in supporting self-care management in chronic illness, the nature of that support is not well understood. This paper represents an analysis of findings drawn from qualitative research into the development of self-care decision-making expertise in adults with longstanding Type I diabetes, specifically addressing ways in which health professionals’ interactions support or fail to support such processes. These findings highlight issues associated with the disease trajectory, the assumptions about intended outcome, and the complex contexts in which individuals live with chronic disease, illustrating the manner in which varying kinds of support may be required at different points within the learning process. They further challenge notions of standardized communication and informational strategies, demonstrating the complexities inherent in the support needs of chronically ill persons as they change over time and context.

Section snippets

Issues of support in self-care management of chronic illness

Although support has been generally acknowledged as a critical factor in adapting to and coping with chronic illness, the mechanisms by which it influences the chronic illness experience are not at all well understood [1], [2], [3]. The majority of the research has been directed toward an understanding of supportive functions within the chronically ill person’s interpersonal networks, and has assumed that the health care professional may play a facilitative role in mobilizing or educating

Background to the diabetes study

Our grounded theory study of expert self-care decision making in Type I diabetes [33] followed each of 22 nominated individuals over a 12-month period. All participants had been diagnosed for at least 15 years. Half (those studied during the first year) were nominated by their specialist clinicians as being expert in self-care management; the remainder (followed during the second year of the study) volunteered to participate on the basis of self-identification of expertise. Each was extensively

Findings related to support

The social context in which Type I diabetes is experienced was a prominent theme throughout the interviews with these participants. Diabetes tends to be an invisible chronic illness, in that those who live with it conduct much of their self-care management outside of the gaze of their co-workers and casual acquaintances, who may remain unaware of the presence of the disease. However, in that it also interrupts and forces modifications in some of the most socially visible functions, such as

Interpretive context of support

The diabetes self-care decision making research illuminates that a number of the assumptions with regard to health care relationships that have generally been held within chronic illness theory deserve thorough critical reflection and rethinking. First and foremost, it seems quite clear that what is and is not supportive may be entirely unrelated to what the professional believes is consistent with friendly, kind, and helpful interactions. As the examples described above illustrate, the

Practice implications

From the results of this study, a number of clinical practice implications arise. Firstly, it seems evident that a complex skill such as self-care management of diabetes will evolve over time and take on differing forms throughout that trajectory. In order for health care professionals to be able to support, rather than interfere with, these processes, learning must be understood in context, and the trajectory of illness experience must be honored. Further, general knowledge with regard to the

Acknowledgements

The authors gratefully acknowledge the support of the British Columbia Health Research Foundation.

References (45)

  • A. Spitzer et al.

    Social support: how does it really work?

    J Adv Nurs

    (1995)
  • D.I. Keeling et al.

    Social support: some pragmatic implications for health care professionals

    J Adv Nurs

    (1996)
  • M.J. Stewart

    Integrating social support in nursing

    (1993)
  • J.E. Hupcey

    Clarifying the social support theory-research linkage

    J Adv Nurs

    (1998)
  • G.A. King et al.

    Interpersonal aspects of care-giving and client outcomes: a review of the literature

    Ambulatory Child Health

    (1996)
  • A.W. Garwick et al.

    Parents’ perceptions of helpful vs. unhelpful types of support in managing the care of preadolescents with chronic conditions

    Arch Ped Adolesc Med

    (1998)
  • H. Kyngas et al.

    Adolescents’ perceptions of physicians, nurses, parents and friends: help or hindrance in compliance with diabetes self-care?

    J Adv Nurs

    (1998)
  • K. Ternulf Nhylin et al.

    The experience of being diabetic

    Scand J Caring Sci

    (1987)
  • S.E. Thorne

    Negotiating health care: the social context of chronic illness

    (1993)
  • T. Pincus et al.

    Social conditions and self-management are more powerful determinants of health than access to care

    Ann Intern Med

    (1998)
  • M. Von Korff et al.

    Collaborative management of chronic illness

    Ann Intern Med

    (1997)
  • L.M. Hunt et al.

    Contrasting patient and practitioner perspectives in type 2 diabetes management

    Western J Nurs Res

    (1998)
  • Cited by (0)

    View full text