A survey exploring the educational needs of care practitioners in learning disability (LD) settings in relation to death, dying and people with learning disabilities

Kingston University London, Londinium, England, United Kingdom
European Journal of Cancer Care (Impact Factor: 1.76). 04/2003; 12(1):12-9. DOI: 10.1046/j.1365-2354.2003.00323.x
Source: PubMed

ABSTRACT This paper presents the findings of a small scale pilot study which explored the educational base and needs of qualified care practitioners in Learning Disability (LD) settings in relation to death, dying and people with learning disabilities. Eighty questionnaires were sent to two NHS Trusts in the South of England. The response rate for the qualified care practitioners from Cherry Blossom (CB) was 100%, whereas for Greengages (GG), the response rate was only 25%. The response from the unqualified care practitioners was disappointingly low, hence we declared them null and void. The analysis of data highlighted major concerns: namely, a lack of consistent policy in the recording of death in residential homes for dying persons with LD; a lack of knowledge, particularly in psychosocial aspects and skills in care of dying persons. The majority of the qualified care practitioners surveyed highlighted the importance of communication with clients and their families. We recommend that communication and interpersonal skills in the care and management of the terminally ill persons with LD be the core component in the nursing curriculum which at present only indicates a trace of it. It is not made explicit that it is essential. This study supports the notion that issues of LD override and obscure physical illness. Our study also highlights ambiguity in the use of concepts and terminology, and demonstrates some limitations in our methodology. We propose that further research, using different methodological approaches, such as Ethnography, Ethnomethodology, or a combination of these, would be appropriate.

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    ABSTRACT: Background The aim of this article was to investigate the beliefs and considerations of professionals concerning an appropriate environment for end-of-life care for people with intellectual disabilities (ID).MethodA survey questionnaire was composed based on a scan of relevant literature and the results of group interviews with professionals, family members and people with ID. The questionnaire focused on the respondents' general beliefs about an appropriate environment for end-of-life care and their specific considerations regarding the place of care of the last client for whom the respondent provided end-of-life care. The questionnaire was sent to 294 care staff members recruited from a nationally representative panel of nurses and social workers, 273 ID physicians recruited from the members list of the Dutch professional association of ID physicians, and 1000 general practitioners (GPs) recruited from a nationally representative sample from a national registration of GPs.ResultsThe overall response was 46%. Professionals predominantly believe that all efforts should be made to ensure that a person with ID receives end-of-life care in their own home environment, and that 24/7 care is available. Respondents indicated that most of the clients (79%) who had last received end-of-life care from an ID care service were able to stay in their own home environment. Decisions to keep the client in their own home environment were primarily based on the familiarity of the environment and the expertise of the team in end-of-life care. Insufficient expertise and a lack of adequate equipment were the main considerations in decisions to move a client. Despite the belief of care staff in particular that the wishes of the person with ID should always be leading when deciding on the place of end-of-life care, only 8% of the care staff and ID physicians explicitly mentioned that the client's wishes were taken into account in actual decision-making.Conclusions Professionals agree that end-of-life care for people with ID should preferably take place in the client's home environment, even when nursing expertise, experience and adequate equipment are not (yet) in place. Nonetheless, a lack of expertise in end-of-life care is the foremost consideration in decisions to move a client. If ID care services want to promote end-of-life care in the client's own home, we recommend formulating a policy on how to realise end-of-life care in the client's own home environment and provide sufficient training and support for staff. To involve people with ID as much as possible, we recommend that professionals integrate more collaborative principles in decision-making about the place of end-of-life care.
    Journal of Intellectual Disability Research 06/2014; 59(3). DOI:10.1111/jir.12130 · 2.41 Impact Factor
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    ABSTRACT: BACKGROUND: Understanding students' attitudes towards certain medical conditions and diagnoses is an important part of the foundational education that students receive prior to their progression into the health care workforce. Therefore having instruments such as the Medical Condition Regard Scale (MCRS) with strong measurement properties is important for health care professions. OBJECTIVES: The objective of this paper was to examine the factor structure of the MCRS when completed by a group of undergraduate paramedic and paramedic/nursing students. METHODS: Data from the MCRS completed by 783 paramedic students were analysed using exploratory factor analysis (EFA) followed by a maximum likelihood confirmatory factor analysis (CFA) to test goodness-of-fit to the sample data. RESULTS: Two factors emerged from the EFA labelled Positive Regard and Negative Regard that accounted for 52.67% of the total variance. The 10-item 2-factor model produced good model-fit and good reliability estimates. One MCRS item was discarded since it loaded on a single factor and was not considered to be viable as a stand-alone subscale. CONCLUSIONS: Findings from the CFA suggest that the new 10-item version of the MCRS is a valid and reliable measure for determining undergraduate paramedic students' regard for medical conditions. The new 2-factor model appears to be defined by Positive Regard and Negative Regard factors.
    Nurse education today 12/2012; 33(9). DOI:10.1016/j.nedt.2012.11.010 · 1.46 Impact Factor
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    ABSTRACT: People with a learning difficulty are living longer. This increased longevity brings with it the conditions and illnesses of older age, such as dementia. It is known that amongst people in the general population who have dementia there is inadequate pain recognition and treatment. This report has identified similar trends in pain management amongst people with a learning difficulty and dementia. The report explores knowledge and practice in relation to pain recognition and management amongst direct support staff, members of community learning disability teams and general practitioners. It also examines the understanding and experiences of pain amongst people with a learning difficulty and dementia. It identifies the dilemmas and obstacles to effective pain management, and reports on examples of good practice. The authors make clear recommendations for practitioners and service providers. The report found that the pain experiences and management of people with a learning difficulty who have dementia mirrored findings in relation to people in the general population. It did, however, identify extra and compounding issues in relation to people with a learning difficulty. The findings in this report will be of interest to service providers and direct practitioners in health, housing, social care and social work.
    03/2011; 15(1). DOI:10.1016/S2171-9748(11)70002-2