Anita Young

Successful Grants 2005-2009

1. Supported self care of heart conditions for people with learning disabilities

Investigators

Institutions

Funding

Body

1.  Supported self care of heart conditions for people with learning disabilities

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

Aims.  To explore stakeholders’ perceptions of the capacity of PLD to make decisions about, and define strategies for, self care of heart conditions.

Methods.  Semi-structured in-depth interviews with 15 PLDs 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 research tools. Thematic framework and content analysis was used to identify salient themes.

Preliminary Findings. Pilot interviews showed that vignettes and pictures had clear resonance and enhanced discussion. Main themes were: levels of PLD’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 appropriateness of autonomy. Self care strategies included giving simple concrete health advice and encouragement to make healthy choices.

The Future. Findings of the initial work will be used to develop and evaluate an intervention for facilitating engagement of PLD in decision making regarding health. The study has highlighted that meaningful engagement of service users in supported self management is possible.  

Back to top

Anita Young

Simon Naji

Thilo Kroll

Dundee

Chest, Heart & Stroke Assoc.