The Unit for Development in Intellectual Disabilities (UDID) is actively involved in a number of on-going research projects. This section of the website provides information on research projects carried out by staff involved in the Unit.
Dying and learning disability: A specialist palliative care perspective
This research aims to explore the provision of specialist palliative care services for people with learning disabilities during the dying phase of their lives. It involves a survey of all specialist palliative care services in Wales, in depth interviews with 10 such providers, and the development of case studies to illustrate the care provided. This will then inform the development of further research and guidance and training materials for professionals working in both learning disability and palliative care services.
Professor Ruth Northway, Robert Jenkins, Maria Parry, Stuart Todd, Iliana Sardi, Clea Atkinson, Adrian Roper
Revealing the hidden transition: A retrospective study of the dying phase of adults with learning disabilities in supported living services
This study aims to obtain retrospective data on the support provided both to people with learning disabilities living within specialist learning disability services during the dying phase of their lives and those that support them. Information will be gathered from providers of such services by means of interviews and focus groups. The findings will lead to more specific and detailed research applications. However, it is anticipated that the findings will then be used to inform service development and staff training.
Professor Ruth Northway, Robert Jenkins, Maria Parry, Stuart Todd, Iliana Sardi, Clea Atkinson, Adrian Roper.
The Impact of a care pathway for people with learning disabilities presenting with dementia
Service development activity to assess the impact of a newly developed care pathway on the care of people with learning disabilities and dementia. Social care staff are shortly to undergo training in the pathway and on their specific role and the impact of this training on competence and confidence of staff will be evaluated by means of pre/post surveys. A follow-up survey will be undertaken after six months to assess the impact this training has on practice. It is anticipated that this work will develop into a research project that will explore the longer term impact on practice and the experience of service users and families.
Download PowerPoint Presentation:
Presenting with Dementia Final Report – May 2009 (PDF, 406Kb)
Professor Ruth Northway, Dr Rachel Davies, Iliana Sardi and Robert Jenkins
Gwent Healthcare NHS Trust staff:
Dr Chris O’Connor, Dr Claire Trudgeon.
UDID have been commissioned by Flintshire Social Services to undertake a review of research and other literature relating to the needs of people with a learning disability who develop dementia and the models of support which are available to meet such needs. The review will adopt a systematic approach using key words to search electronic databases, hand searching of key journals and a 'snowball’ technique which identifies further references from other articles obtained. It is anticipated that this review will lead to the identification of recommendations for service development and delivery as well as for further research.
Professor Ruth Northway, Iliana Sardi, Dr. Rachel Davies, R. Jenkins and P. Llewellyn
Parental and informal carer perceptions of the health & social care services provided for their dependents: A mixed methodological scoping study.
The majority of people with learning disabilities live at home with their patents or family carers. This was the case even before the recent policy initiatives moved towards ‘care in the community’. Encouragingly, people with learning disabilities are living longer and whilst this situation is to be applauded it places additional burden and stress on the aging carers.
This study aimed to explore carer’s perceptions in relation to their knowledge of, and satisfaction with, the health and social services they received for their learning disabled dependent.
Three methods of data collection were used which included questionnaire, focus group and electronic hand held voting system:- Six hundred and forty five questionnaires were sent to the total population of members of a Parent and Carer Federation with South Wales. 151 were returned (23%); Two focus groups were held. The electronic voting system Teamworker R was used to seek normative data on the consensus between focus group participants.
Quantitative data were analysed using SPSS, qualitative data were analysed using NVivo version 2. Analysis of the electronic voting was undertaken using the teamworker software.
Parents and carers reported surprisingly low levels of health and social care help and information in terms of both the quality and quantity provided. More than this, parents suggested that information often had to be ‘prized out’ of professionals. The need to ‘fight and shout’ was perceived as vital in receiving the appropriate information and services they needed to adequately carer for their learning disabled dependent. This finding is also identified in Northway et. al., (2006). Nurses, including Learning Disability nurses who support carers, need sufficient knowledge and information to share with parents and carers. The frustration and anger felt by those who care for the learning disabled was highlighted by this study, along with the often underestimated but very real risk of ‘carer burnout’.
Hopes and fears concerning service developments: A study of the views of parents and family carers of people with learning disabilities.
Parents and family carers of people with learning disabilities should be involved in strategic planning to ensure that policy and service developments reflect their needs and priorities. This study was thus commissioned in 2005 by a local authority and a parent forum alliance to inform this process. Participants had varying knowledge, and experience, of service provision. Whilst positive aspects were commented upon difficulties were also highlighted. In particular a lack of information, the need to be proactive and the feeling of having to fight for service provision were noted. Similar experiences have been noted elsewhere. Participants had some difficulties in identifying their hopes for the future but their fears often centred on what would happen to their relatives after they were no longer able to provide support. Views concerning the effectiveness of current methods of involving parents and family carers in service planning were mixed. Whilst progress is evident further development is needed if services are to meet the support needs of parents and family carers of people with learning disabilities. Developing effective mechanisms for seeking their views needs to be central to this process.
Hopes and Fears Concerning Service Developments (PDF, 464Kb)
Professor Ruth Northway, Iliana Sardi, Ian Mansell, Robert Jenkins.
The experience of person-centred planning: A qualitative study of the experiences of people with learning disabilities and their carers.
Person-centred planning (PCP) is central to the Welsh Assembly Government Learning Disabilities Strategy (Welsh Assembly Government, 2004) where it is stated as a service principle that each service user should be supported to play an integral part in the planning of their own lives.
In addition, it states that the wishes and preferences of the service user must be ‘fully taken into account’. A project worker (person-centred planning facilitator) is now in post and it is planned that 10 people with learning disabilities will be supported in developing person-centred plans over the year 2005/06. It is anticipated that, along with a review of the literature, the results obtained will enable the researchers to make helpful recommendations about ways of improving practice in the implementation of person-centred planning. Additionally, it is hoped that this will contribute to the development of appropriate educational programmes to enable current and future staff to be better prepared for the implementation of such plans.
The research will focus on the situation of people with learning disabilities in one area; however, the results will also be of interest more broadly at national levels. The main question this research seeks to address is ‘What is the experience of people with learning disabilities and their main carers in relation to person-centred planning’? This will, hopefully, provide information on areas of good practice and on areas requiring further development. The study aims to evaluate the experiences of those people with learning disabilities and their carers who are offered a person-centred plan as part of a pilot scheme being introduced by one Council under their 2005 strategy. It will also seek to evaluate the experiences of the facilitator. Taken together, the research findings of this study should result in helpful recommendations for practice, education and further research.
The Experience of Person-Centred Planning (PDF, 726Kb)
Dr. Paul Wheeler, Dr. Rachel Davies, Iliana Sardi, Dr. Edwin Jones, Professor Ruth Northway.
Whilst research in this field is limited some positive trends are evident such as the proportion of papers authored by learning disability nurses, the range of journals in which the papers are published, and the emergence of some discernable lines of inquiry. However, there are also areas which need to be addressed if these developments are to be translated into sustainable programmes of research. Recommendations for development thus include the need to extend the range of research designs used, the need to act upon recommendations for further research made in studies already published, the need to address the issue of funding and the need to adopt a collaborative approach both within the UK and internationally.
Professor Ruth Northway, Professor Duncan Mitchell (Manchester Metropolitan University), Kalbir Kaur Mann.
The experience of vulnerable adults: Adult protection, policy and practice
In recent years increasing attention has been paid to developing policies to protect people from abuse. The National Assembly for Wales (2000) guidance document In Safe Hands has led to the adoption of multi-agency adult protection policies throughout Wales. Likewise research is now being undertaken into both the policy and practice aspects of adult protection. Following on from the study “Abuse of People with Learning Disabilities: Policy, Practice and Educational Implications in Wales” UDID have been working with Powys Social Care Services to undertake research into the experiences of vulnerable adults who have been through the adult protection system. This qualitative work using a grounded theory approach will be conducted in 2007 and will make an important contribution to redressing the absence of the voice of the vulnerable adult in adult protection research.
Dr. Rachel Davies, Professor Ruth Northway, Dr. Paul Wheeler.
Abuse of people with learning disabilities: Policy, practice and educational implications in Wales
In light of growing evidence of the problem of abuse of people with learning disabilities, this study sought to address the question, ‘To what extent is best practice in relation to preventing, identifying and responding to the abuse of people with learning disabilities evident within Wales?
Summary Report (PDF, 205.0 KB)
Final Report (PDF, 562.0 KB)
Professor Ruth Northway, Dr. Rachel Davies, Robert Jenkins, Ian Mansell, Professor Gavin Fairbairn.
People generally are living longer due to improvements in social conditions, improved access to health care and advances in medical care and the numbers of older people with a learning disability are predicted to increase over the coming decades. 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 and they are more at risk of physical disorders and diseases such as sensory defects, cancer, diabetes and fractures and musculo-skeletal, respiratory, cardiovascular and neoplastic illnesses.
Some genetic conditions, for example Down’s syndrome, bring additional problems such as increased prevalence of vascular disease, hypothyroidism and dementia. Psychiatric disorders such as dementia, anxiety, depression, affective and delusional disorders are common amongst older people with learning disabilities due to additional risk factors stemming from old age and a learning disability. It can thus be seen that, as a result of increasing health problems older people with a learning disability may require the intervention and support of nurses. These may be nurses who specialise in working with people with learning disabilities and/ or other nurses working in primary care. It is important for health and social services to work closely with people with a learning disability and their carers to support and manage the process of ageing.
Educationalists and service planners will require information on the present and future needs of older people with learning disabilities in order to equip professional groups such as learning disability nurses with the necessary knowledge and skills to meet those needs. However, this is an area that has not been researched. This study will, therefore, seek to address this gap in knowledge by examining how learning disability nurses, and other nurses, can address the needs of older people with a learning disability.
Information, advice and support for older people living in residential care: An exploratory survey of advocacy
Older people living in residential care may require information, advice and support in order to ensure that their interests are safeguarded, represented and promoted. Advocacy can have an important role to play in this process and research is needed to examine the factors which influence how such forms of assistance are both provided and used.
Aims and objectives
This exploratory study aimed to increase understanding of the factors that influence the type of advocacy used and the impact such assistance has on older people living in residential care. The objectives were to seek the views of older people, their families and care staff, to compare the findings, to identify areas of agreement and disagreement, and to examine the impact of the provision of independent advocacy within residential homes on views concerning this form of advocacy.
Research was undertaken in seven residential homes for older people. The homes offered differing levels of service from an independent advocate. Interviews were undertaken with residents (n= 102) and postal questionnaires were distributed to family members and care staff. Forty family questionnaires and 28 care staff questionnaires were returned.
Older people, their families and care staff all agreed that family members and care staff are the key sources of information, advice and support for older people living in residential homes. No significant difference was found between who they felt should provide such assistance and who they identified as currently providing it. No group of participants identified a key role for independent persons such as advocates in providing assistance. However, this needs to be placed in the context of other findings which revealed a lack of understanding amongst older people concerning the term ‘advocacy’ and a general lack of awareness amongst participants concerning the role of the independent advocate. No significant differences were found according to the form of advocacy available within the residential home (visiting advocate or access to a community advocacy scheme).
Some limitations to this study are noted in terms of response rate and research setting. However, it is concluded that there is a need to raise awareness concerning the role of independent advocates amongst older people, their families and care staff. Furthermore there is a need to support family members and care staff in their role as providers of information, advice and support. Recommendations for future research are also made.
Professor Ruth Northway, Dr. Jamal Ameen, Dr. Anne Marie Coll, Robert Jenkins, Faye Cornthwaite, Sarah Evans.