2336
Self-management of end-stage renal disease: the patient perspective
Goodhead, C, Eyre, M, Renal Unit, York Teaching Hospital NHS Foundation Trust
Background and problem
Over the last decade there has been a drive to encourage self-management of long-term conditions through initiatives such as the Expert Patient Programme. Some commentators feel the focus on working to strengthen patients’ self-efficacy to promote self-management is narrow and individualistic and obscures the relevance of the wider social context. Self-management of end-stage renal disease is often equated with dialysis patients’ taking on tasks such as hand washing and needle insertion, but this research sees it in the wider context of managing all aspects of life with end-stage renal disease.
Purpose
To ascertain from a sample of renal patients their knowledge of their type of kidney disease and what it was like to live with the disease. Secondly, to direct discussion on to self-management by enquiring how they coped with their experiences, whether they felt in control and what aspects of ESRD, treatment or life with the disease they felt they self-managed.
Design
This was a qualitative piece of research, with seven patients and one partner taking part in semi-structured interviews on their experience of life with the disease and, more specifically, on their understanding of self-management. The initial aim was to interview 12 participants from all treatment modalities and a range of ages but numbers were restricted due to time and resource constraints. Whilst no conservative care patients agreed to be interviewed, the participants included patients on PD, haemodialysis in a renal unit, home haemodialysis and those who had received a transplant. Interviews were recorded and then analysed in conjunction with an experienced renal social worker and consistent systemically-oriented themes clearly emerged.
Findings
Four super-ordinate themes were identified as well as a number of related sub-themes under the following headings: physical impacts, factors associated with social support, experiences of oppression and psychosocial impacts. As expected, there was a range of opinion about the quality of professional support, and while some patients reported feelings of loss of control and individuality, others praised renal staff, citing personal characteristics such as friendliness, a caring nature, humour and sociability as particularly valued. Support from family members, employees and the wider community were critical in influencing patients’ coping abilities, and participants identified how general societal ignorance of kidney disease and treatment could also translate into feelings of discrimination and oppression. Dialysis patients felt oppressed by the constraints of the treatment, and many participants spoke of feelings of shock, fear, trauma, stress, loss of control, anger, blame, guilt and existential angst, prompting experiences of depression and anxiety.
Conclusion and relevance
Self-management should be viewed in terms of each person’s unique experiences, the meaning they make of them, their self-management understandings and goals, how they would choose to work towards those goals and how this can best be achieved. The role of the MDT is vital to ensure that patients are treated holistically and that assessments seek to encompass psychological, social, emotional, physical and spiritual needs.