Informal care and the self-management partnership: implications for Australian health policy and practice

Abstract

Objective. The Serious and Continuing Illness Policy and Practice Study (SCIPPS) aims to improve the care and support for patients with chronic illness and their family carers. Here we describe the carers’ contribution to the self-management partnership and discuss the policy and practice implications that are relevant to improving the support available for informal care in Australia. Design. A secondary analysis of SCIPPS data. Fourteen carers of patients between 45 and 85 years with chronic heart failure, chronic obstructive pulmonary disease and diabetes were conveniently sampled from western Sydney and the Australian Capital Territory. Semi-structured interviews were conducted. Data were analysed using qualitative content analysis. Results. Key roles that carers perform in the self-management partnership included: home helper; lifestyle coach; advocate; technical care manager; and health information interpreter. Two negative consequences of juggling these roles included: self-neglect and conflict. Conclusions. Rigid eligibility criteria limit carers’ access to essential support programs which underestimates and undervalues their contributions to the self-management partnership. Support services should focus on the development of practical skills to perform the caregiving roles. In addition, health professionals require support to work more effectively with carers to minimise the conflict that can overshadow the care and self-management partnership. What is known about the topic? There is a body of research developed both internationally and in Australia that describes the role of family carers in assisting family members with disabilities and other chronic illnesses to maintain independence in the home and community and that deals with the negative implications of caregiving. Much of the existing research is focussed on the roles and responsibilities that family carers perform in order to compensate for their care recipient’s physical and cognitive impairments due to illness. What does this paper add? This paper adds a qualitative exploration of the contribution that family carers make to the self-management partnership with care recipients and health professionals in the home, community and health care settings. It provides additional insights on the exact roles that family carers perform as part of the self-management partnership with care recipients who have chronic heart failure, chronic obstructive pulmonary disease and complicated diabetes. Furthermore, it offers a detailed discussion of the policy and practice implications of our findings and their relevance to improving the support available for informal care in Australia. What are the implications for practitioners? Carers have a vital role to play in the provision of care and this role is expected to increase in parallel with the rising rates of chronic illness. The paper discusses policy recommendations for improving access, demand and appropriateness of support services for carers providing support for care recipients not traditionally recognised as having a genuine need for care. It also identifies the need for health professionals to work more effectively with family carers by making explicit their expectations of this role in order to minimise conflict in the care partnership.