Evaluation of a modified chronic disease self-management programme for people with intellectual disabilities

Abstract

Aim : To evaluate an eight week chronic disease self-management programme adapted for people with moderate intellectual disabilities. Background : People with intellectual disabilities are four times more likely to have a chronic disease than the rest of the population, have a shorter life expectancy and experience persistent problems in accessing health services. It is known that self-care underpins effective chronic disease management but there has been little work on facilitating self-care of chronic disease for people with intellectual disabilities. Methods : A multiple case study design was used to evaluate four chronic disease self-management programmes across England. Data was collected in 2007 through semi-structured interviews and focus groups with tutors, service providers, participants and their carers, participants’ diaries and analysis of resource use. Results : Forty one people with moderate intellectual disability completed the programme; 95% of those originally recruited. How people were identified and recruited to the programmes influenced group cohesion and satisfaction, and open self-referral raised issues for risk assessment. The findings suggest that a modified self-management programme is appropriate for people with moderate intellectual disabilities and can support self-management behaviour change. Tutors and organisers evaluated success in two discrete ways; behavioural changes or social outcomes such as increased social engagement. Conclusion : The programme was accessible for people with moderate intellectual disabilities and can influence chronic disease self-management behaviours. To maximise participation, further development is required in tutor support and recruitment strategies. There is also a need to debate further the criteria for judging effectiveness for this population. Relevance to clinical practice : A chronic disease self-management programme modified for people with intellectual disabilities can help this population manage their chronic disease and access health care.