Background
The aim of this study was to explore the current status of end-of-life care and dying of people with intellectual disability based on the experiences of staff in community living services.

Materials and Methods
Focus groups and individual interviews were conducted, guided by grounded theory methodology.

Results
The current status of end-of-life care and dying comprised five key ‘issues’: knowledge of dying, ethical values, the where of caring, the how of caring and post-death caring. These issues occurred in relationship with ‘partners’, including the dying person, other clients, fellow staff, family, external health services and the coroner.

Conclusions
End-of-life care represents a complex interaction between the care issues and the partners involved in care. Despite this complexity, staff were committed to the provision of end-of-life care.

End-of-life care and dying: issues raised by staff supporting older people with intellectual disability in community living services

Background
The aim of this study was to explore what community living staff talked about and did with people with intellectual disability (ID) to assist them to understand dying and death.

Method
Guided by grounded theory methodology, focus groups and one-to-one interviews were conducted with 22 staff who had talked about any topic relating to dying and death with their clients.

Results
There was little evidence that staff talked with, or did things with clients to assist understanding of the end of life, both prior to and after a death. Prior to death staff assisted clients in a limited way to understand about determining wishes in preparation for death, and what dying looks like by observance of its passage. Following a death staff offered limited assistance to clients to understand the immutability of death, and how the dead can be honoured with ritual, and remembered.

Conclusions
The findings have implications for why people with ID have only partial understanding of the end of life, the staff skills required to support clients’ understanding, and when conversations about the end of life should occur.

What is talked about? Community living staff experiences of talking with older people with intellectual disability about dying and death

Background
Most staff working in intellectual disability services will be confronted with people with intellectual disabilities who need support around death, dying and bereavement. Previous studies suggest that intellectual disability staff tend to protect clients from knowing about death and avoid communication about death. The aims of this study were to gain further insight into the individual, organisational and contextual factors that affect the communication of death-related bad news to people with intellectual disabilities by intellectual disability staff and to develop guidelines for services to enable appropriate communication with clients about death and dying.

Method
Semi-structured interviews were held with 20 social care staff working in intellectual disability residential or supported living services in London, who had supported a client affected by death-related bad news in the past 6 months.

Results
Staff found supporting people with intellectual disabilities around death and dying extremely difficult and tended to avoid communication about death. The following factors had a particularly strong influence on staff practice around communicating death-related bad news: fear and distress around death; life and work experience; and organisational culture. Staff attitudes to death communication had a stronger influence than their client's level of cognitive or communicative abilities. Managers were important role models.

Conclusions
Service managers should ensure not only that all their staff receive training in death, loss and communication but also that staff are enabled to reflect on their practice, through emotional support, supervision and team discussions. Future work should focus on the development and testing of strategies to enable intellectual disability staff to support their clients in the areas of dying, death and bereavement.

/pdf/investigating-the-factors-that-affect-the-communication-of-4nvej02g57.pdf

Investigating the factors that affect the communication of death-related bad news to people with intellectual disabilities by staff in residential and supported living services: An interview study.

The goal of the following portfolio is to explore the experience of people with learning disabilities when moving from the family home to a care home, as well as, to understand the impact that this change has on the identity of this population. This is the focus of the research presented. Furthermore, this portfolio includes a case study and a critical literature review. The case study p resents counselling work carried out with a client with learning disabilities deciding to move from her family home. The critical literature review aims to explore and present approaches and tools that are employed in bereavement counselling for people with learning disabilities and to critically evaluate current literature on approaches used in bereavement counselling for this population.

The impact of moving home to the identity of people with learning disabilities

Background
The study explored the grief process of persons with intellectual and developmental disabilities (PWIDDs) as perceived by direct care workers (DCWs) and how such workers can guide and support PWIDDs experiencing grief.

Materials and Methods
A thematic analysis approach was used to examine data from nine focus groups with 60 DCWs from five community-based organizations.

Results
Findings were supported in the context of seminal grief and bereavement theories. Three themes (i.e. reactions to loss, processing the loss and incorporating the loss) and related subthemes emerged from the data.

Conclusions
PWIDDs are susceptible to traumatic grief, and DCWs are often key witnesses to such experiences. DCWs’ perspectives can guide the development of grief and bereavement training which can lead to more tailored support systems.

Perspectives of US Direct Care Workers on the Grief Process of Persons with Intellectual and Developmental Disabilities: Implications for Practice.

This study aimed to investigate whether a 1-day training course improved support staff knowledge about bereavement and grief in people with a learning disability. A questionnaire based, mixed design was used. Forty-eight participants were randomly assigned to one of two equal groups. A staggered design allowed for group 2 to act both as a control group and to receive training. Within- and between-group comparisons were made. Training significantly improved staff knowledge in all the areas measured. An analysis of staff knowledge at 1 month after training was not possible due to a low response rate. A short training course was successful in significantly increasing the knowledge of paid carers about issues relating to bereavement for people with a learning disability. The clinical and ethical implications of the study are discussed along with limitations and suggestions for further research.

/pdf/the-impact-of-staff-training-on-the-knowledge-of-support-1n62mwybud.pdf

The Impact of Staff Training on the Knowledge of Support Staff in Relation to Bereavement and People with an Intellectual Disability.

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The Impact of Staff Training on the Knowledge of Support Staff in Relation to Bereavement and People with an Intellectual Disability.