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Exploring the experiences of people with intellectual disabilities when service users die
- Authors:
- RYAN Karen, et al
- Journal article citation:
- British Journal of Learning Disabilities, 39(4), December 2011, pp.259-265.
- Publisher:
- Wiley
People with intellectual disabilities are living for longer than ever before and are experiencing the deaths of their friends and other service users. However, there is limited research on the effect of the deaths of fellow service users on this group. This qualitative study described the provision of palliative care to people with intellectual disabilities in Ireland and assessed the population’s palliative care needs. Sixteen focus groups held with 91, staff in which participants described their perception of the experiences of people with intellectual disabilities when other service users die, were explored. Findings highlighted the emotional impact of the death of a friend on people with intellectual disabilities. Situations where staff facilitated the involvement of services users are described, and the study points to the benefits of this approach. Possible barriers to involvement are highlighted. The findings confirm the importance of ensuring that people with intellectual disabilities have a good understanding of the concept of death to ease bereavement.
Quality of life: a survey of parents of children/adults with an intellectual disability who are availing of respite care
- Authors:
- CAPLES Maria, SWEENEY John
- Journal article citation:
- British Journal of Learning Disabilities, 39(1), March 2011, pp.64-72.
- Publisher:
- Wiley
Some two-thirds of the people registered on the Irish National Intellectual Disability Database live at home, with family members providing support. Use of respite care services by parents with a child/adult with an intellectual disability (ID) is growing in the context of social policy initiatives for greater social inclusion of people with disabilities. Parents often require assistance in this caring role, needing to be supported with reliable, flexible and responsive services. Parents often have to negotiate complex barriers to access support services such as respite, health or social care. This article draws on a recent Irish study that investigated the quality of life of 49 parents of people with an intellectual disability and who are using respite care. In general, results indicated that parents were experiencing good to excellent quality of life. However, demand exceeded supply, with many parents facing a lengthy wait gaining access to respite care. However, more research needs to be undertaken out to establish what services are deemed most valuable to parents.
The role and timing of palliative care in supporting persons with intellectual disability and advanced dementia
- Authors:
- McCARRON Mary, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 24(3), May 2011, pp.189-198.
- Publisher:
- Wiley
People with Down syndrome are at increased risk of developing Alzheimer’s dementia and the onset of the disease is also earlier. This study aimed to better understand the role and timing of palliative care interventions in supporting persons with intellectual disabilities and advanced dementia. A total of 13 focus groups were held involving 57 staff from 6 intellectual disability services and 1 specialist palliative care provider in Ireland. A qualitative descriptive approach was taken to analysis. Seven inter-related influences on the role and timing of palliative care emerged: dignity, comfort and quality in care; when should palliative care begin; pain and symptom management; collaboration and accessing specialist support; the challenges of hospital placement; co-ordinating care; and supporting the person through death. The specialist palliative care staff recognised that person-centred care delivered in intellectual disability services was consistent with palliative approaches, but staff in intellectual disability services did not consider advanced dementia care as ‘palliative care’. Both groups were unsure about the role of palliative care at early stage of dementia but appreciated specialist palliative care contributions in addressing pain and symptom management challenges.
End-of-life care for people with intellectual disabilities: paid carer perspectives
- Authors:
- RYAN Karen, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 24(3), May 2011, pp.199-207.
- Publisher:
- Wiley
An increasing number of intellectual disability staff are now expected to care for service users towards the end-of-life. This study aimed to examine staff experiences of caring for a person with intellectual disabilities with palliative care needs and to explore the effects of this on staff. A total of 64 individuals from intellectual disability services working in different disciplines and a range of work settings took part in 12 focus groups. Interviews were analysed using framework analysis. The findings indicated that the participants were strongly motivated to provide high quality palliative care and felt the experience enriched practice. However, they considered themselves to be inadequately prepared to meet need and this often led to staff stress. A number of issues appeared to heighten stress: situations when end-of-life care decision making was challenging; when staff felt ‘pushed out’ by relatives; and when staff did not have sufficient support or time to provide care or mourn the loss of service users. The study draws attention to areas where strategies should be developed to support staff in order to improve the quality of palliative care provided to people with intellectual disabilities.
Ageing and health status in adults with intellectual disabilities: results of the European Pomona II study
- Authors:
- HAVEMAN Meindert, et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 36(1), March 2011, pp.49-60.
- Publisher:
- Taylor and Francis
POMONA II was a European Commission funded public health project collecting information from 14 countries using a set of key health indicators specifically relevant for people with intellectual disabilities. This research focused on age-specific differences relating to environmental and lifestyle factors and the 17 medical conditions measured by the POMONA Checklist of Health Indicators. The article describes how information was collected using the POMONA Health Interview Survey and Evaluation Form from a sample of 1,253 participants in Austria, Belgium, Finland, France, Germany, Ireland, Italy, Lithuania, the Netherlands, Norway, Romania, Slovenia, Spain, and the United Kingdom. It then presents the results of the analysis, with tables showing characteristics of people with intellectual disabilities in the study, frequency of social contacts with relatives or friends according to age, lifestyle risk factors in people with intellectual disabilities according to age, and general and age-specific prevalence rates of health problems. The authors discuss how healthy older adults with intellectual disabilities are with regard to lifestyle factors, and whether there are health disparities between older adults with and without intellectual disabilities. They note that some evidence of health disparities was found for older people with intellectual disabilities, particularly in terms of under diagnosed or inadequately managed preventable health conditions.
Assessing psychosocial work-related stress across five European countries: implications for workforce development
- Authors:
- DENNY Margaret, WELLS John, CUNNINGHAM Jennifer
- Journal article citation:
- Journal of Mental Health Training Education and Practice, 6(2), 2011, pp.93-103.
- Publisher:
- Emerald
The European Union's social and employment policy emphasises that member states should develop workforce development policies that combat work-related stress. However there is little comparative information on the nature of psychosocial job strain and the experiences of staff working in the vocational rehabilitative sector in mental health and intellectual disabilities. This paper reports the findings of a small-scale study, using a cross-sectional job content questionnaire (JCQ) and focus groups, to explore psychosocial job stress among managers and support workers in five European countries. Findings from the JCQ showed that just under 20 percent of the sample exhibited symptoms of job stress. The focus groups identified the key stressors as: balancing work demands with time available to carry out tasks; poor communication within organisations; and feeling unsupported in one's work. As a result of this work, which is part of the Reducing Occupational Stress Employment Project (ROSE), it was found that there are no national or European data collected upon which to base effective interventions to combat occupational stress and no effective mechanisms in the workplace to deal with occupational stress for professionals working in this sector. Based on the findings, a web site was developed that provides information to managers, trainers, and support workers to manage personal and organisational stressors and raise awareness of the issue.