Families’ experiences of raising concerns in health care services: An interpretative phenomenological analysis

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 were analyzed using interpretative phenomenological analysis (IPA; Smith, 1996). RESULTS: The data were grouped into three superordinate themes: the nature and importance of concerns, relationships between familes 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.