A grounded theory study of the role of disclosure in the management of long-term conditions: who needs to know?

Abstract

A high and increasing proportion of people in the United Kingdom are living with a long-term condition (DH, 2005a). The National Health Service is facing the challenge of increased pressure on its service provision. Government Policy has placed emphasis on supporting individuals to self-care (Department of Health, 2005a, c). However, there are specific challenges associated with living with a long-term condition, and in particular the psychosocial aspects of illness when set alongside a clinical approach to care (Gabe et al, 2004, Bury et al, 2005) It has been argued that disclosure of illness may in itself be a self-care strategy (Munir et al, 2005). However, to date individuals‟ experiences of disclosure of long-term conditions are neither clearly defined nor its role in managing a long-term condition fully understood. The aims of the study were to explore the role of disclosure in the management of a long-term health condition. The study drew on constructivist grounded theory (Charmaz, 2006) undertaking thirty-five in-depth qualitative interviews (fifteen people living with epilepsy, and twenty people living with type 1 diabetes) recruited from patient support groups and clinical nurse specialist‟s clinics. This study identified that strategies of disclosure are not necessarily fixed but may be subject to change over time. “Learning about disclosure” is an integral part of living with a long-term condition. Three key disclosure roles were identified: (1) access to self-care and social support, (2) non-disclosure (concealment) of the condition to protect one‟s identity from stigma. (3) redressing myths about the condition in advance: to avoid perceived stigma. The findings provide important insights that could enable health care professionals to develop more of an emphasis on including disclosure as an issue when talking to patients about managing type 1 diabetes and epilepsy and this is also relevant to a broad spectrum of long-term conditions