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

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.