Perspectives from consultant nephrologists and families on how patients with a learning disability cope with chronic kidney diseases

Healthcare for patients with a learning disability is an important topic; one that is receiving increased attention by the media, government, and NHS. Management of chronic illness is also an important topic, prioritised by the Department of Health. There is little research looking at chronic illness and learning disability, and contemporary models of coping and adjustment do not take into account the possible effects of having a learning disability. This research looked at how patients with a learning disability cope with chronic illness and focused specifically upon the experiences of patients with a learning disability diagnosed with stage V renal failure. This condition involves making a number of difficult decisions about treatment and adhering to difficult treatment regimes, and is amongst the most intrusive of illnesses in terms of impact upon quality of life. Five consultant nephrologists and five families/carers were interviewed. The data were analysed using grounded theory. The interviews from the two participant groups were analysed as two separate groups, and two models emerged from the data describing how individuals with a learning disability may cope with kidney disease. The results showed a complicated relationship between the level of learning disability and coping. Other factors unique to the individual (such as their previous experiences), the level and type of support the patient has, and their experiences of hospital care (including the role of the consultant) are all additional important factors that can affect coping. The research findings are related to the literature, and possible clinical implications are discussed. Future areas of research are suggested.