Community engagement and education
Addressing the needs of South Asian families with genetic disorders
Bibliographic Data
| ID | 15673147 |
|---|---|
| Authors | Naz Khan (0009-0009-8329-6065, University of Manchester, corresponding author), Nasaim Khan, Gifford Kerr (Blackburn College), Helen Kingston (Manchester Academic Health Science Centre) |
| Year | 2016 |
| Volume | 7 |
| Issue | 4 |
| Pages | 317-323 |
| Publication date | 2016-09-10 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Journal of Community Genetics (JOURNAL) |
| Journal identifiers | ISSN: 1868-310X • E-ISSN: 1868-6001 |
| Publisher | Springer Science+Business Media (PUBLISHER • DE) |
| DOI | 10.1007/s12687-016-0278-0 |
| PMID | 27614444 |
| OpenAlex | W2516300974 |
| Language | EN |
| Citations received | 2 |
| References cited | 17 |
Consanguineous marriage is common among the South Asian heritage community in the UK. While conferring social and cultural benefits, consanguinity is associated with an increased risk of autosomal recessive disorders and an increase in childhood death and disability. We have previously developed a genetic service to address the needs of this community. We report the extension of this service to include community-based initiatives aimed at promoting understanding of genetic issues related to consanguinity and improving access to genetic services. Our approach was to develop integrated clinical, educational and community engagement initiatives that would be sustainable on a long-term basis. The service provided for South Asian families by a specialist genetic counsellor was extended, and a series of genetics education and awareness sessions were provided for a diverse range of frontline healthcare workers. Two community genetic outreach worker posts were established to facilitate the engagement of the local South Asian population with genetics. The education and awareness sessions helped address the lack of genetic knowledge among primary health care professionals and community workers. Engagement initiatives by the genetic outreach worker raised awareness of genetic issues in the South Asian community and families affected by autosomal recessive disorders. All three elements of the extended service generated positive feedback. A three-stranded approach to addressing the needs of consanguineous families affected by autosomal recessive disorders as recommended by the World Health Organisation is suggested to be an acceptable, effective and sustainable approach to delivery of service in the UK
Community education · Community engagement · Consanguinity · Economic growth · Environmental health · Family medicine · Outreach · Political science · Population · Public health · Public relations · Service (business · Service delivery framework · Genomics and Rare Diseases · Hemoglobinopathies and Related Disorders · Medicine · Nursing · Prenatal Screening and Diagnostics · Pediatrics
Developing and evaluating a culturally appropriate genetic service for consanguineous South Asian families
Consanguineous marriages
Addressing key issues in the consanguinity-related risk of autosomal recessive disorders in consanguineous communities
Examining the family-centred approach to genetic testing and counselling among UK Pakistanis
Responding to the increased genetic risk associated with customary consanguineous marriage among minority ethnic populations
| Citations per year | 0.22 |
|---|---|
| Citation span | 2017 - 2019 (3) |
| Highly cited | No |