• Addressing key issues in the consanguinity-related risk of autosomal recessive disorders in consanguineous communities: lessons from a qualitative study of British Pakistanis

      Darr, Aliya; Small, Neil A.; Ahmad, Waqar I-U.; Atkin, K.; Corry, P.C.; Modell, B. (2016-01)
      Currently there is no consensus regarding services required to help families with consanguineous marriages manage their increased genetic reproductive risk. Genetic services for communities with a preference for consanguineous marriage in the UK remain patchy, often poor. Receiving two disparate explanations of the cause of recessive disorders (cousin marriage and recessive inheritance) leads to confusion among families. Further, the realisation that couples in non-consanguineous relationships have affected children leads to mistrust of professional advice. British Pakistani families at-risk for recessive disorders lack an understanding of recessive disorders and their inheritance. Such an understanding is empowering and can be shared within the extended family to enable informed choice. In a three-site qualitative study of British Pakistanis, we explored family and health professional perspectives on recessively inherited conditions. Our findings suggest, first, that family networks hold strong potential for cascading genetic information, making the adoption of a family centred approach an efficient strategy for this community. However, this is dependent on provision of high quality and timely information from health care providers. Secondly, families’ experience was of ill-coordinated and time-starved services, with few having access to specialist provision from Regional Genetics Services; these perspectives were consistent with health professionals’ views of services. Thirdly, we confirm previous findings that genetic information is difficult to communicate and comprehend, further complicated by the need to communicate the relationship between cousin marriage and recessive disorders. A communication tool we developed and piloted is described and offered as a useful resource for communicating complex genetic information.
    • Examining the family-centred approach to genetic testing and counselling among UK Pakistanis: a community perspective

      Darr, Aliya; Small, Neil A.; Ahmad, W.I.; Atkin, K.; Corry, P.C.; Benson, J.; Morton, R.; Modell, B. (2013)
      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 (n = 50) 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.
    • Methodological Challenges of Researching Positive Action Measures

      Archibong, Uduak E.; Darr, Aliya; Eferakorho, Jite; Scally, Andy J.; Atkin, K.; Baxter, C.; Johnson, M.R.D.; Bell, M.; Waddington, L.; Wladasch, K.; et al. (2009)
      This paper highlights some ofthe methodological challenges which have arisen in collecting data for an international study on positive action measures. It will describe strategies employed to encourage participation in the study from as wide a range of organisations and individuals using a mixed method approach. The paper will also discuss the methodological and sensitive issues related to this type of research in organisations and strategies adopted by the research team to ameliorate any problems that have arisen whilst maintaining trustworthiness and rigour in the study.
    • Perceptions of the Impact of Positive Action in EU and non-EU Countries

      Archibong, Uduak E.; Eferakorho, Jite; Darr, Aliya; Scally, Andy J.; Atkin, K.; Baxter, C.; Johnson, M.R.D.; Bell, M.; Waddington, L.; Wladasch, K.; et al. (2009)
      Abstract: Around the world, inequalities exist around boundaries of race, social class, gender, disability, religious beliefs and sexual orientation, often resulting from past and current discriminatory practices. Governments have taken certain measures, including enacting policies such as positive action, to remedy such discrimination. This paper provides a comparative analysis of perceptions of the impact of positive action in seven EU and three non-EU countries. The study adopted participatory methods including consensus workshops, interviews and policy analysis to obtain data from designers of positive action. Findings are discussed, conclusions drawn and wide-ranging recommendations are made at the EC, individual countries and organisational levels.
    • Positive Action Measures Across Different Equality Grounds, Organisations and Sectors in European and Non-european Countries

      Archibong, Uduak E.; Scally, Andy J.; Eferakorho, Jite; Darr, Aliya; Atkin, K.; Baxter, C.; Bell, M.; Waddington, L.; Wladasch, K.; Bedard, T.; et al. (2010)
      Abstract: This article is based on a large-scale European Commission project on international perspectives on positive action measures. The paper presents an analysis of the perceptions of positive action held by respondents from all the countries participating in an international survey, focussing specifically upon differences across equality grounds, sector and organisation type. This paper will also provide examples of positive action being applied in European and non-European countries that participated in the study. The study adopted extensive literate and online survey to obtain data from designers of positive action. Findings are discussed, conclusions drawn and wide-ranging recommendations are made at the European Commission, individual countries and organisational levels.
    • The recruitment of South Asian people into the nursing profession: a knowledge review.

      Darr, Aliya; Atkin, K.; Johnson, M.; Archibong, Uduak E. (2008)