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.
"Professionals in ID care services wish to care for their clients with ID themselves up to the very end (Todd 2004; McCarron et al. 2010a,b; Ryan et al. 2011; Wiese et al. 2012). However, several other studies show that staff working in ID care services often lack expertise and education in end-of-life care (Ng & Li 2003; Botsford 2004; Stein 2008; McCarron et al. 2010a; Tuffrey-Wijne et al. 2010; Bekkema et al. 2014b). Ryan et al. (2010, 2011), for instance, found that Irish professionals caring for people with ID often lack confidence and training in end-oflife care, which led to considerable stress when they cared for terminally ill persons. "
[Show abstract][Hide abstract] 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
"Strikingly, 85% of the respondents feel inadequately trained to provide end-of-life care. This is in line with the lack of training which has been found in other countries (Ng and Li, 2003; Ryan et al., 2010, 2011; Wiese et al., 2012a). Here is a task for organizations, teachers and policy makers to investigate what can be done to increase the knowledge and expertise of current and future nursing staff and social workers. "
[Show abstract][Hide abstract] ABSTRACT: Nurses and social workers caring for people with intellectual disabilities are increasingly confronted with clients in need of end-of-life care. Previous studies, however, suggest that professionals in intellectual disability care services lack knowledge and experience concerning end-of-life care. Moreover, the proportion of nurses within the staff of intellectual disability services has declined in recent years, while the proportion of social workers has increased, which may have consequences for the quality of end-of-life care.
To gain insight into the quality of end-of-life care, past vocational training, training needs and expert consultation opportunities of nurses and social workers working in intellectual disability care services.
Survey questionnaire study conducted in the Netherlands.
Intellectual disability care services.
The study sample was recruited from an existing nationally representative research panel of care professionals. In 2011, all 181 nurses and social workers in the research panel who worked in intellectual disability care services were sent our survey questionnaire.
Postal survey addressing education, views and needs regarding end-of-life care.
The response was 71.8%. Respondents positively evaluated the quality of end-of-life care. However, most respondents felt inadequately trained in end-of-life care issues. Nurses had received more training in end-of-life care and had fewer training needs than social workers. Respondents wished for additional training, especially in supporting clients in dealing with the impending death and farewell process. Half of the respondents were unaware of the availability of external consultation facilities.
This study shows that although nurses and social workers positively appraise the quality of end-of-life care for people with intellectual disabilities, the majority feel inadequately trained to provide good end-of-life care. As the number of people with intellectual disability in need of end-of-life care grows, organizations need to offer additional relevant training and must give information about the availability of external expert consultation for nurses and social workers.
"Given its close association with mental illness, attempted suicide patients also often bear the brunt of emotionally distant health care which can exacerbate their sense of helplessness (Berlim et al., 2007; Eskin et al., 2011; Kishi et al., 2011; Emul et al., 2011; Tzeng et al., 2010; Talseth and Gilje, 2011). Individuals with intellectual disabilities also commonly experience deleterious labelling as 'non-normal' patients , with serious misconceptions regarding their capabilities and autonomy particularly prevalent (Ng and Li, 2003; Heidgerken et al., 2005; Goreczny et al., 2011; Edwardraj et al., 2010). One condition that evokes one of the strongest emotive responses of health care workers however is substance abuse, with affected individuals almost universally typecast as being selfish and unworthy (Christison and Haviland, 2003; Wynn et al., 2009; McLaughlin et al., 2006; Neale et al., 2008; Brown et al., 2010). "
[Show abstract][Hide abstract] 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.
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