Supported self care in cardiovascular disease for people with intellectual disabilities

Background

People with intellectual disabilities (PID) often have been excluded from healthcare decision-making. This study investigates perceptions of PID, carers and health care professionals regarding the feasibility of meaningful engagement in decision-making about self care related to cardiovascular disease.

Aims

To explore stakeholders' perceptions of the capacity of PID to make decisions about and define strategies for self care regarding cardiovascular disease.

Methods

Semi-structured in-depth interviews with 15 PIDs 15 carers and 15 health care professionals. Interviews used case vignettes, with accompanying pictures that described routine healthcare consultations. Pilot cognitive testing of the interviews enabled service users' views to influence the design of the final interview. Thematic framework analysis was used to identify salient themes.

Findings

Pilot interviews showed that vignettes and pictures had clear resonance and enhanced discussion. Main themes were: levels of PID's understanding of health; rights to make life choices; priority of social networks; influence of carers on healthy living. There were differences in perceptions amongst and within stakeholder groups e.g. regarding the capacity for autonomy. Self care strategies included giving simple concrete health advice and encouragement to engage in health behaviours.

Discussion

The study has highlighted that meaningful engagement of PID in self care is possible. Findings will be used to develop an intervention for facilitating engagement of PID in self care. Further research needs to examine how attitudinal barriers (e,g, among staff) can best be tackled.