Developing strategies to improve the management of chronic illness: a focus on disability and psychosocial aspects in an illness with an organic cause (cancer) and an illness with a non-organic cause (IBS).

Abstract

Models of health care concentrate on acute conditions yet the major cause of disease burden is chronic illness. An emphasis on biomedical, as opposed to bio-psychosocial models, underestimates psychological disability and fails to explain burdens resulting from illnesses with no known organic cause. Topics explored were: quality of life, chronic and acute stress, emotion regulation, communication, support services, patient expectations, satisfaction with medical treatment, and health care seeking. Using grounded theory (Glaser, 1992) and active patient participation (Susman & Evered, 1978), the major objective was to develop strategies to improve the management of chronic illness. Two groups were studied: 20 patients with an organic cause (cancer) and 21 patients with a non-organic cause (Irritable Bowel Syndrome). Using quantitative and qualitative measures, observational studies (N=29), interviews (N=41), focus groups (N=12), and a case study (N=10) were conducted. IBS patients reported greater disability (increased distress and reduced quality of life) than the cancer group and other chronic illnesses. Cancer patients showed impaired quality of life but they reported levels of distress up to 50% lower than the general population and 75% lower than another chronic illness group. Some cancer patients appeared to under-report levels of distress; however, when applying Pennebaker’s (1997) written disclosure method, emotional expression was not uniformly associated with beneficial outcomes. Interviews with IBS patients revealed that determinants of dissatisfaction involved a lack of acceptance and/or understanding of an IBS diagnosis and an expectation that consultants would find an organic cause. Cancer participants reported no need for participation in decisions concerning treatment. Evaluations of the quality of health services received were distinct from evaluations of the quality of care received by specialists. Fighting spirit and positivity were linked with emotional inhibition and a lack of uptake of support services. Patients became more pro-active in seeking emotional and social support later in their illness experience. These findings were interpreted within the Conservation of Resources Theory (COR; Hobfoll, 2001; 1999; 1998). Results in this study challenge public policy recommendations that focus on encouraging consumer participation in health care. Recommendations for intervention and future research with cancer patients focus on application of the COR theory. In IBS, patient education, improvements in communication and the adoption of Drossman’s (1998) bio-psychosocial model are advocated. Finally, recommendations for improvements in methodology involve suggestions to incorporate quantitative and qualitative measures using longitudinal assessments with the grounded theory (Glaser, 1992) approach being an excellent methodological template.