Under-representation of minority ethnic groups in cardiovascular research: a semi-structured interview study.

BACKGROUND: Minority ethnic groups are often excluded from research, and the reasons for this are complex. OBJECTIVE: This study aimed to explore why minority ethnic groups do not participate in research, and how their participation can be increased. METHODS: Ninety-one interviews were undertaken with people who either had (n = 48) or had not (n = 43) responded to the invitation to take part in a community heart failure screening study. These were split across four ethnic groups (African Caribbean, Bangladeshi, Indian and Pakistani) and between men and women. Participants were interviewed once, face-to-face, either in English or with an interpreter if they wished. Interview transcripts were analysed thematically. RESULTS: The main reason for participating in the screening study was for a health/heart check. Many participants either had not understood that it was research or had not known what this meant. Most people who did not participate had not remembered receiving the invitation or had been unavailable at the time. Few participants, including those who had and those who had not participated in the screening study, had any understanding of the objectives and nature of research. Once this had been briefly explained to them, many described altruistic reasons for why they would participate in research in the future. CONCLUSIONS: We have shown that South Asians and Black African-Caribbean communities are willing to take part in research as long as they are approached directly and the reasons for the research and potential benefits are explained clearly to them.

Involving children and young people in the development of art-based research tools.

In this article, the authors describe how they worked with children and young people to develop art-based techniques and activities for use in a study exploring family communication about genetic conditions. It highlights key methodological issues about children and young people's participation in research, the concept of what constitutes an art-based activity and how this was applied to developing art-based data collection tools.

Family communication between children and their parents about inherited genetic conditions: a meta-synthesis of the research.

In families affected by an inherited genetic condition, parents face a difficult task of having to communicate genetic risk information to their children. A systematic review of all major health and medical research databases was undertaken using current guidelines to identify original relevant research papers from 1980 to 2007, which explore the issues surrounding parents and their children's communication about inherited genetic risk. A total of 9698 abstracts were found of which 158 research papers were reviewed as potentially relevant. A final 17 papers were identified which met predefined inclusion and exclusion criteria. Using a meta-ethnographic approach, all identified studies' findings were analysed as primary data sources by three researchers, who independently identified the key concepts. A high level of congruence emerged between researchers, and agreed concepts were used to examine similarities and differences between papers. The findings informed the development of a narrative framework exploring the issues that related to parents' explanations of inherited genetic risk to their children, the reasons for sharing information, children's understanding of parents' explanations, the emotions evoked for family members and the support and guidance received from health professionals. Providing information, checking understanding, and explaining and managing the emotional feelings that arise were integral to supporting children's coping with genetic risk information. However, many parents struggled with one or more of these components and required more support specific to the child's developmental stage, and family members' transition of readjustment to the impact of the genetic condition.

Preparing young people for future decision-making about cancer risk in families affected or at risk from hereditary breast cancer: A qualitative interview study.

PURPOSE: Women carrying the mutated BRCA gene, have approximately an 80% life-time risk of developing breast cancer with 50% risk of their children inheriting the gene mutation. Many parents find it difficult to know when and how to disclose this information to their children and how such disclosure might affect their child's future decision-making. METHOD: This study explored the communication of genetic risk information in families using qualitative semi-structured interviews conducted with parents, children (7-11years) and young people (12-18years) affected or at risk from a BRCA gene mutation. Thematic analysis was applied to coded transcripts producing four themes; family communication, perception of cancer risks, risk management strategies and impact of genetic risk communication in children and young people's decision making. RESULTS: Twenty-seven individuals from 11 families took part, recruited through purposive sampling techniques. Cancer risk caused by a BRCA gene mutation induced a sense of fear in parents about their children's future. As a result, parents with hereditary breast cancer disclosed limited information about the risks associated with prophylactic surgery and/or the psychological and emotional impacts of surgery on body image. This had implications to children and young people's perceptions of prophylactic procedures, which were already influenced by cultural understandings of the 'desirable body' and increasing acceptance and proliferation cosmetic surgery. CONCLUSION: Lack of risk management information and the acculturation of cosmetic surgery combined to limit children and young people's understanding of the impact of hereditary breast cancer; reducing their ability to actualise the physiological, psychological and emotional consequences of surgery.

Parents' and children's communication about genetic risk: a qualitative study, learning from families' experiences.

Little is known about how parents explain to their children their risk of inheriting a gene that may cause disease in the child or in the child's future progeny. This study explored how genetic risk information is shared between family members and the factors affecting it, to ascertain the implications for children, young people and their parents to inform future service development and provision. A volunteer group of parents, children (8-11 years) and young people (12+ years) in families affected by or at risk of one of six inherited genetic conditions was interviewed. The semi-structured interviews explored the roles of family members, the language used and the self-reported psychological outcomes in a discussion on genetic risk information. The findings were analysed using grounded theory. A total of 33 families participated, which included 79 individuals. Parents often found discussing genetic risk information very difficult and emotionally painful. Discussions were not usually planned and often a major event prompted parents to finally explain genetic risks to their children; however, children usually preferred to learn about the genetic condition gradually throughout childhood. Parents identified a number of challenges they faced related to talking to children, and many thought health professionals should provide more advice to assist them in providing developmentally appropriate information. We therefore conclude that greater emphasis is required in supporting parents and children in discussing genetic risk information throughout their child's development. Open communication about genetic risks throughout childhood seemed to help children and parents cope better and come to terms with the implications of the genetic condition.