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A study of complicated grief symptoms in people with intellectual disabilities
- Authors:
- DODD P., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 52(5), May 2008, pp.414-425.
- Publisher:
- Wiley
Previous studies have shown a significant association between familial bereavement and the onset of challenging behaviours and psychopathology in people with intellectual disabilities (ID). However, little work has been done to accurately describe the specific symptoms of grief, in particular symptoms of complicated grief in this population. Consensus criteria for the diagnosis of complicated grief have been drawn up and tested for validity in the general population. This study aimed to examine the occurrence of symptoms of complicated grief, and to explore the relationships between complicated grief and bereavement experience. A bereavement history questionnaire and a newly developed measure examining for symptoms of complicated grief were administered to a group of carers of people with mild or moderate ID, who had experienced a parental bereavement within the previous 2 years. The sample was recruited from two large voluntary agencies providing residential and day services to people with ID in Dublin. The questionnaires were also administered to a matched comparison group, who had not been bereaved. This carer-based comparison study has revealed that bereaved individuals with ID experience complicated grief symptoms following the death of a parent, with one-third of the bereaved group experiencing 10 or more clinically apparent symptoms. In addition, complicated grief symptoms were more likely to occur with higher rates of bereavement ritual involvement. These findings have both clinical and research implications.
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.
Evaluation of a bereavement training program for staff in an intellectual disabilities service
- Authors:
- REYNOLDS Sile, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 5(1), 2008, pp.1-5.
- Publisher:
- Wiley
The impact of a staff-training program on knowledge and confidence in supporting people with intellectual disabilities (ID) at the time of bereavement was examined. Thirty-three staff members from a Dublin, Ireland-based ID support service participated in the study. Both the training (n = 17) and control (n = 16) groups completed measures of confidence at the beginning and end of a 4-week period around supporting service users through a bereavement survey designed for the study, as well as the Staff Support and Satisfaction Questionnaire. During this interval, the training group completed a two-day training focusing on exploring existing strategies for supporting service users and providing staff with additional skills. Staff members also completed a survey of knowledge at the outset of the study. Over the 4 weeks, there was a significant increase in confidence among the training group, with no comparable changes in the control group. However, as predicted, neither group showed significant changes in general support or job satisfaction. The findings suggest that the training significantly increased staff members’ confidence in their ability to respond to the challenges of support service users during bereavement. The study's findings also have a number of practical implications, including the need to provide appropriate support for staff.
Supporting adults with an intellectual disability during experiences of loss and bereavement: staff views, experiences and suggestions for training
- Authors:
- McEVOY John, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 23(6), November 2010, pp.585-596.
- Publisher:
- Wiley
Care staff are a source of support and information for people with intellectual disabilities (ID) following a bereavement. How staff perceive the loss experience has implications for the quality and level of support provided to individuals with ID at times of personal loss. This study investigated staff knowledge and attitudes to bereavement, experiences of supporting people with ID during times of loss, the degree of service agency support and staff training needs. Twenty-four staff members participated. Staff reported a lack of confidence and uncertainty, particularly around operational procedures following bereavement. Conflicting attitudes between themselves and the service agency around bereavement support procedures and a lack of awareness of the emotional impact of grief on service users and staff were highlighted by participants along with the need for quality information, skill development and further training. The paper concluded that service agencies need to be more proactive in supporting staff and in developing policy and guidelines in conjunction with practical training initiatives.
Caregiver perceptions of the understanding of death and need for bereavement support in adults with intellectual disabilities
- Authors:
- MacHALE Rosemary, McEVOY John, TIERNEY Edel
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 22(6), November 2009, pp.574-581.
- Publisher:
- Wiley
Care staff are an important source of information and support for people with intellectual disabilities following bereavement. This study explored staff perceptions of service users' conceptualisations of death, reactions to bereavement, required levels of support and staff confidence in providing post-bereavement support. Forty-two staff rated individuals with intellectual disabilities with whom they worked on a regular basis. In general, staff believed that service users had a good concept of death, though staff tended to overestimate levels of understanding and possibly underestimate the potential for dysfunctional behaviour post-bereavement. Although staff expressed confidence in their ability to recognise grief symptoms, they were less confident in their ability to provide post-bereavement support. The implications for staff training and post-bereavement support are considered.
Attitudes to bereavement and intellectual disabilities in an Irish context
- Authors:
- DODD Philip, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 18(3), September 2005, pp.237-243.
- Publisher:
- Wiley
This study examines the experience of bereavement for people with intellectual disabilities in Ireland, and makes international comparisons. The mixed method study was carried out using two questionnaires. The first was used to study national service and organisational approaches to bereavement. The second questionnaire was used to study a staff group working in Ireland, assessing staff knowledge and understanding of the grieving process. The results were compared with a UK staff group who were assessed using the same questionnaire (Murray et al. 2000). Staff and service attitudes were found to be very positive in supporting people with intellectual disabilities who have been bereaved. There is considerable understanding of the needs of bereaved individuals, and there is a high level of support in the participation in grief rituals. When compared with a UK staff group, Irish staffs were more inclined to encourage individuals to take part in bereavement rituals, though they had less actual experience in supporting bereaved people. Only one service had written bereavement guidelines. The authors conclude there appears to be cultural differences in the experience of bereavement for people with intellectual disabilities. This is important in the context of staff training and policy development in grief and bereavement.