PhD study outline

PhD study title
Meeting the health needs of older people with learning disabilities: the role of nurses.

Research student
Robert Jenkins, University of South Wales

Dr Jim Richardson Dr Rachel Davies Dr Linda Ross

Start / finish
2006 -2011

Older people with learning disabilities may experience the same physical deterioration as they age as do the general population. However, there is a suggestion that ageing in people with learning disabilities starts earlier, that they are at greater risk of developing physical and mental disorders and diseases, requiring the intervention and support of nurses. Educators and service planners will require information on the present and future needs of older people with learning disabilities in order to equip these professionals with the necessary knowledge and skills to address those needs.

This study sought to explore what older people with learning disabilities and their carers perceived as their health care needs. It also sought to explore what nurses perceived as their role in meeting such needs and the implications for nurse education, research and practice. A three-stage approach was used which comprised of a detailed literature review in stage one.

Stage two involved the development of six case studies around six older people with learning disabilities utilising semi-structured interviews and gathering data from a variety of other sources which were analysed using Interpretative Phenomenological Analysis (IPA). Reflexivity formed a key component of this approach in both stage two and three as it allowed the researcher to lay bare potential biases and influences in the interpretation of the gathered data. It also enabled the researcher to focus on the subtle changes that led to a sense of emancipation. Stage three comprised of two focus groups with nurses specialising in the care of people with a learning disability and also with nurses who might be involved in supporting older people with a learning disability and their families but who did not specialise solely in this area of work.

All six case studies highlighted that older people with learning disabilities had for the majority of their life had contact with nurses. Common themes to emerge were the use of medication, physical health problems and lack of friendships. Carers were concerned for the future of the person they cared for and the impact of PEG feeding on the individual’s Quality of life. The clients understanding and feelings towards getting older seemed unclear and in some instances professionals lacked knowledge of the client and learning disability. All nurses participating in the focus groups had come into contact with older people with learning disabilities except two nurses in the area of mental health. Common themes to emerge were again physical and mental health needs, health checks, PEG feeding and some institutional care issues. Dementia care seemed a major concern as well as the difficulties of supporting older people in their place of residence.

There was no clear role for nurses with regards to older people with learning disabilities although nurses seemed to have been involved in their care across the lifespan. Most nursing groups would welcome additional training with regards to the needs of older people with learning disabilities. There appeared to be very little ‘hands on’ health promotion activities undertaken by nurses related to this client group. Spiritual and palliative care needs seemed to be largely ignored. Community learning disability nurses had difficulties in finding appropriate services and accommodation for older people with learning disabilities. Future roles for nurses were identified particularly for learning disability nurses in meeting the needs of older people with learning disabilities. Recommendations were also made regarding the implications for research, practice and education.