Families' experiences of raising concerns in health care services: an interpretative phenomenological analysis

Bright, Naomi; Hutchinson, Nick; Oakes, Peter; Marsland, Dave

Abstract

Background This exploratory study aimed to increase understanding of the experiences of families of people with intellectual disabilities when noticing and raising concerns in services. A qualitative design was employed. Methods Seven participants (all female) were recruited through local and national voluntary agencies; five were mothers of people with intellectual disabilities, one was the aunt and one the sister. Participants took part in semi structured interviews centred on their experiences of noticing and raising concerns, these were recorded and transcribed. The data was analyzed using Interpretative Phenomenological Analysis (IPA; Smith, 1996). Results The data was grouped into three superordinate themes: the nature and importance of concerns, relationships between families and staff and the process of raising concerns. A key and surprising finding was the importance of ‘the little things’. Conclusions This research highlights important implications for services such as the need to simplify the process of raising concerns, attend to the relationship with families and ensure advocacy services are identified for those without family.

Citation

Bright, N., Hutchinson, N., Oakes, P., & Marsland, D. (2018). Families' experiences of raising concerns in health care services: an interpretative phenomenological analysis. Journal of Applied Research in Intellectual Disabilities, 31(3), 405-412. https://doi.org/10.1111/jar.12419

• Journal Article Type: Article
• Acceptance Date: Sep 23, 2017
• Online Publication Date: Oct 10, 2017
• Publication Date: 2018-05
• Deposit Date: Oct 16, 2017
• Publicly Available Date: Oct 11, 2019
• Journal: Journal of applied research in intellectual disabilities
• Print ISSN: 1360-2322
• Electronic ISSN: 1468-3148
• Publisher: Wiley
• Peer Reviewed: Peer Reviewed
• Volume: 31
• Issue: 3
• Pages: 405-412
• DOI: https://doi.org/10.1111/jar.12419
• Keywords: Adult safeguarding; Family; Intellectual disabilities; Residential care
• Public URL: https://hull-repository.worktribe.com/output/472443
• Publisher URL: http://onlinelibrary.wiley.com/doi/10.1111/jar.12419/full
• Additional Information: This is the accepted manuscript of an article published in Journal of applied research in intellectual disabilities, 2018. The version of record is available at the DOI link in this record.