Inconsistencies in the roles of family‐ and paid‐ carers in monitoring health issues in people with learning disabilities: some implications for the integration of health and social care

Abstract

Accessible summary This paper looks at the views of paid‐ and family‐carers about discussing health matters with people with learning disabilities. The author found that the roles of paid‐ and family‐carers in monitoring health were not clearly defined. Explaining health problems and different medical tests to people with learning disabilities proved difficult. Nevertheless, carers possessed good skills in helping people with learning disabilities understand more about their health. Summary Changes in the living circumstances of people with learning disabilities have seen responsibility for their health become the provenance of paid‐and family‐carers. Thirteen semi‐structured interviews were conducted with three family‐carers and ten paid‐carers. Findings revealed that the role of these carers was undefined, leading to difficulty in deciphering who was responsible for the health care of the people they supported, with some paid‐carers claiming that health was outwith their remit. The difficulty of monitoring health problems of people with learning disabilities was noted, and carers disclosed skills and techniques that they used to explain health messages to individuals. If the health needs of people with learning disabilities are to be met, then a more consistent approach to health care within the community setting is needed, especially in terms of the remit of paid‐and family‐carers and with the integration of health and social services.

Attitudes and perceptions of people with a learning disability, family carers, and paid care workers towards cancer screening programmes in the United Kingdom: A qualitative systematic review and meta‐aggregation

“…The initial searches yielded 14 747 references. After title and abstract sifting, 22 full papers were assessed and 11 papers based on 10 projects were included in the review 24,[43][44][45][46][47][48][49][50][51][52] (Figure 1).…”

“…A family carer highlighted that paid care workers potentially have issues with sharing information in the best interest of the women; “…They went upstairs, and made it clear it's Holly they were here to see. So if we don't know, how can we help?” (family carer) . This suggests that the nurse in this case focused solely on the WwLD and excluded the family carer, who felt they should have been involved in health care decisions relating to their relative.…”

“…Four papers reported on cervical cancer screening, 43,45,46,52 five reported on breast cancer screening, 24,[47][48][49]51 and two reported findings on cervical and breast cancer screening. 44,50 No papers reported on colorectal cancer screening. In total, 93 WwLD, 81 paid carer workers, and three family carers were included as participants.…”

“…24,[43][44][45][46][47][48][49][50][51][52] Two papers 43,44 failed to detail whether 110 people were family or paid care workers, thus they have not been included in the total participants. The studies were conducted in England, 43,44,46 Scotland, 24,45,[50][51][52] and Northern Ireland. [47][48][49] Six papers did not report participant ages.…”

“…[47][48][49] Six papers did not report participant ages. 24,44,45,47,50,52 In those that did, categories of ages were provided. Ages ranged from 20 to 69 years of age.…”