Background: Effective lifestyle modification facilitated by cardiac rehabilitation is known to reduce the occurrence of adverse coronary events and mortality. South Asians have poorer outcomes after a myocardial infarction than the general UK population, but little is known about their experiences of family support, cardiac rehabilitation and lifestyle change. Aims: To explore the nature of family support available to a sample of South Asian and White-European cardiac patients and to highlight similarities and differences between these groups with regard to cardiac rehabilitation and lifestyle modification. Methods: Using a qualitative approach, semi-structured interviews (in 1 of 6 languages) were conducted by researchers with; 45 South Asian patients and 37 carers and 20 White-European patients and 17 carers. Interviews were conducted in a home setting, up to eighteen months after discharge from hospital following myocardial infarction, coronary artery bypass surgery or unstable angina. Results: The main themes that emerged related to the provision of advice and information, family support and burden, dietary change and exercise regimes. Conclusions: Several cultural and ethnic differences were identified between patients and their families alongside similarities, irrespective of ethnicity. These may represent generic characteristics of recovery after a cardiac event. Health professionals should develop a cultural repertoire to engage with diversity and difference. Not every difficulty a person encounters as they try to access appropriate service delivery can be attributed to ethnic background. By improving services generally, support for South Asian populations can be improved. The challenge is to know when ethnicity makes a difference and mediates a person's relationship with service support and when it does not.
WHO advice suggests a family-centred approach for managing the elevated risk of recessively inherited disorders in consanguineous communities, whilst emerging policy recommends community engagement as an integral component of genetic service development. This paper explores the feasibility of the family-centred approach in the UK Pakistani origin community. The study took place within a context of debate in the media, professional and lay circles about cousin marriage causing disability in children. Using qualitative methods, a total of six single-sex focus group discussions (n050) were conducted in three UK cities with a high settlement of people of Pakistani origin. Tape-recorded transcripts were analysed using framework analysis. Kinship networks within Pakistani origin communities are being sustained and marriage between close blood relatives continues to take place alongside other marriage options. Study participants were critical of what was perceived as a prevalent notion that cousin marriage causes disability in children. They were willing to discuss cousin marriage and disability, share genetic information and engage with genetic issues. A desire for accurate information and a public informed about genetic issues was articulated whilst ineffective communication of genetic risk information undermined professionals in their support role. This study suggests a community that is embracing change, one in which kinship networks are still active and genetic information exchange is taking place. At the community level, these are conditions supportive of the family-centred approach to genetic testing and counselling.
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