What do People with Down Syndrome want from their Cardiac Team?

This research investigates the experiences of people with Down syndrome who have a congenital heart condition (CHC). While people with Down syndrome are at greater risk of CHC, little is known about their views on hospital treatment and healthcare. A review of the literature indicates the incidence and implications of CHCs for people with Down syndrome including barriers accessing health care and higher mortality for this group. The research considered ethical issues pertinent to conducting research with people with a learning disability including the choice of research method, participant recruitment, data collection and analysis. A qualitative approach was adopted and involved semi-structured interviews with five individuals with Down syndrome and a CHC. The interview covered topics including in the impact of Down syndrome, the impact of a CHC, and involvement in healthcare decisions. Three themes resulted from a thematic analysis: Who is the Patient; Self-Care, Care from Others and Gaps in Care and Health and Fitness. The major implications of this research for people with Down syndrome, their families and healthcare professionals include the need for clarity regarding supported decision making and supporting those with Down syndrome who may not have family members to aid decisions. This research involved a small relatively homogenous group of individuals and the area could benefit from further research, for example those without parent carers to support healthcare decisions and medical procedures. The research highlighted difficulties inherent to carrying out research with vulnerable groups, such as those with a learning disability. Future research should consider the process of including vulnerable groups in research, such as how to balance the research agendas of the researchers and the researched.