Meeting the health needs of older people with intellectual disabilities: exploring the experiences of residential social care staff

Abstract

Older people with intellectual disabilities often experience high levels of health needs and multiple morbidities but they may be supported by residential care staff with little or no previous experience of identifying and meeting health needs. Little is known regarding how they undertake this health-related role and this exploratory study seeks to address this gap. A purposive sample of 14 managers of supported living accommodation in Wales were interviewed in 2014 to determine their experiences of supporting tenants in relation to age-related health needs. The semi-structured interviews were transcribed and thematically analysed. Three of the emerging themes are reported in this paper: meeting health needs, the consequences of ageing and relationships. Findings indicate that residential care staff support older people with intellectual disabilities with complex and multiple health needs: they monitor health status, support access to healthcare, provide additional support arising from changing health needs and advocate for tenants in the context of healthcare. However, their role is often not understood by healthcare professionals. The importance of staff having a long-term relationship with those they support was identified as being important to identifying any health-related changes. The need to develop effective relationships with healthcare staff was also noted. It is concluded that there is a need for better understanding among health staff of the role of residential social care workers and for further research regarding health-related communication.

Access to primary and community health-care services for people 16 years and over with intellectual disabilities: a mapping and targeted systematic review

“…One study used semistructured interviews with managers of supported living accommodation to explore how residential social care staff support older people with ID to meet their health needs. 43 This study found that residential social care staff often felt that their role in recognising, monitoring and meeting clients' health needs was not always understood by health professionals and that this had an impact on their ability to meet these needs.…”

“…Fourteen studies reported in 16 publications, published from 2003 to 2017, were included in this group (Table 12). Of these, three dealt with general practice, 44,45,48 three dealt with a range of primary care services, 36,37,49 three dealt with carers working at residential or supported living homes [33][34][35]43 and two dealt with formal and informal carers of people with ID in residential or family homes. 38,39 The other three studies dealt with audiology services, 42 cervical and cancer screening 40 and sexual health.…”

“…Worryingly, some people with ID said that they did not have anyone to talk to about their health. 44 Companion/carer/support worker role Three studies 43,48,114 reported that tensions between services and uncertainty about roles and boundaries affected identification of and response to health needs.…”

“…Studies highlighted the importance of maintaining accurate health records 43,89,99,118 to facilitate communication within and between services when appropriate. One study 43 highlighted that some care staff may lack the literacy and numeracy skills to maintain accurate health records. A small number of studies discussed patient-held records such as health passports but there were concerns about how these are used and that they are not completed accurately by all health professionals.…”

Signs in People with Intellectual Disabilities: Interviews with Managers and Staff on the Identification Process of Dementia

“…The time and continuity of the relationship between the person with an ID and staff as well as knowledge support from colleagues and managers were considered as important prerequisites for the detection of possible signs of dementia and the adaptation of the caring process in the interviews. Northway [ 27 ] argues that staff who are close to the person with ID have a unique knowledge of changes in health conditions and, therefore, points to the importance of respecting the knowledge that staff have access to. Llewellyn [ 28 ] indicates that the unique knowledge of staff represents a crucial prerequisite for starting a care process designed to discover dementia and adapt support based on changing needs.…”