The experiences of registered intellectual disability nurses caring for the older person with intellectual disability

Abstract

Aim and objectives. To explore the experiences of registered intellectual disability nurses caring for the older person with intellectual disability. Background. Increased longevity for the older person with intellectual disability is relatively a new phenomenon with social and medical factors having significantly increased the lifespan. The ageing population of people with intellectual disability is growing in Ireland, and they are outliving or expected to outlive their family carers. Design. A qualitative Heideggerigan phenomenological approach allowed the researcher become immersed in the essence of meaning and analyse how registered intellectual disability nurses working with the older person perceive, experience and express their experience of caring. Methods. After ethical approval was granted, data were collected through semi-structured interviews from seven participants and were transcribed and analysed thematically using Burnard's framework for data analysis. Results. Three key themes were identified: 'care delivery', 'inclusiveness' and 'clientfocused care'. The study highlights the need for effective planning, an integrated approach to services and that the registered intellectual disability nurse needs to be integrated into the care delivery system within the health service to support client and family carers in the home environment. Conclusions. Overall, the study shows the importance of teamwork, proactive planning, inclusion, attitudes, individualised care, knowing the person and best practice in providing care for older people with intellectual disability. Relevance to clinical practice. This paper reports on the findings of a study which explored the experiences of caring for the older person with intellectual disability. Teamwork, proactive planning, client-centred approach and supporting clients living at home are important as ageing is inevitable.

Nurses' attitudes, beliefs, and emotions toward caring for adults with intellectual disabilities: An integrative review

“…To provide quality care to adults with ID, a person‐centered approach, which focuses on the individual's desires, goals, strengths and needs, as opposed to the needs of the service provider, is vital . Findings of this integrative review reveal that although nurses use the language “person‐centered”, and “client‐focused”, which they describe as flexible, individualized care based on the needs and abilities of the adult with ID, their infantilizing and paternalistic attitudes do not allow the individual's desires and goals to guide care, the hallmark of person‐centeredness. A person‐centered approach represents a paradigmatic shift from the medical model of disability which relates disability to an individual's impairment and the social model of disability which proposes a mismatch between the individual and environmental support.…”

Nurses’ representations of caring for intellectually disabled patients and perceived needs to ensure quality care

“…In the UK, emerging research, some with specialty registered intellectual disability nurses, is demonstrating themes centred on empowerment and care that is more person‐centred (Bigby & Knox , Doody et al . ). As parts of the programmes and services the nurses spoke of appear relatively new, outcomes for patients and their families from such an approach remain mostly to be seen.…”

A scoping review to characterize bridging tasks in the literature on aging with disability

“…Our findings suggest there is clearly a need for bridging within the I/DD population, and that more research is needed to evaluate these bridging tasks and how they influence individual client-and system-level outcomes. In addition, it will be important to understand the knowledge, skills, and attributes that professionals need to engage in bridging, and what training is needed for professionals (e.g., social workers, intellectual disability nurses, occupational therapists or other rehabilitation professionals) who may be enacting bridging in practice [36].…”

“…Bridging tasks were discussed in three different perspectives in the included articles: bridging tasks currently in practice (n = 34, 69%); bridging tasks evaluated (n = 21, 43%); or bridging tasks called for or viewed as needed (n = 19, 40%). Examples of bridging tasks that were being discussed currently in practice were mandated joint planning initiatives between sectors [24], specific personnel such as registered nurses in ID who have the capacity to bridge aging and ID [36], and funding for cross-disability research and training centers on aging with a disability [64]. Bridging tasks reviewed in original research studies included pilot projects involving joint programming between disability services client and aged care residents [34,47], a palliative care educational program for staff caring for those with Intellectual Disabilities [37], and area agencies incorporating linkages with Developmental Disability agencies [46].…”

“…One specific group involved in bridging at the meso level were Aging and Disability Resource Centres established within the United States of America to assist individuals with disability and older adults to access services and supports [8]. At the micro level, certain professions were described as being suited to enact bridging, including social workers [54] and nurses [36]. Aging in place [26], improving access to or the quality of care [29,50], improving inclusion or participation of individuals with disability [25,27,30], and service coordination [35] were outcomes mentioned, or suggested implicitly when describing the bridging tasks.…”