Using the Delphi technique to achieve consensus on bereavement care in palliative care in Europe: An EAPC White Paper.

BACKGROUND: The WHO definition of palliative care includes bereavement support as integral to palliative care, yet a previous survey of bereavement support in palliative care in Europe has shown a range of service responses to loss. A rigorous approach to agreeing and implementing a palliative care bereavement framework was required. AIM: The aim of this study was to develop consensus on best-practice recommendations for bereavement care principles, structures, processes and delivery based on current practice and evidence. DESIGN: In accordance with Guidance on Conducting and Reporting Delphi Studies, a consensus-building five-round Delphi technique was performed. A scoping review of research literature informed drafting of 54 statements by the EAPC Bereavement Task Force. Evaluation of the statements was performed by an expert panel using a 5-point Likert scale. ⩾80% agreement were defined as essential items and 75%-79% agreement were defined as desirable items. Items with a consensus rating <75% were revised during the process. SETTING/PARTICIPANTS: The Delphi study was carried out by an expert panel among membership organisations of the European Association for Palliative Care. RESULTS: In total, 376 email requests to complete Delphi questionnaire were distributed with a response rate of 23% (n = 87) and a follow-up response-rate of 79% (n = 69). Of the initial 54 statements in six dimensions, 52 statements were endorsed with 26 essential statements and 26 desirable statements. CONCLUSIONS: The six dimensions and 52 statements agreed through this Delphi study clarify a coherent direction for development of bereavement services in palliative care in Europe.

Some issues in the provision of adult bereavement support by UK hospices.

This paper considers some issues in the provision of adult bereavement support in UK hospices. The paper is based on the findings of a multi-method study conducted in two phases over 30 months (2003-2005) to examine the nature and quality of adult bereavement support in UK hospices from the perspectives of bereaved people and professional and volunteer bereavement workers [Field, Reid, Payne, & Relf (2005). Adult Bereavement Support in Five Hospices in England. Sheffield, UK: Palliative and End-of-Life Care Research Group, University of Sheffield. (Available from Professor Payne)]. It discusses the importance of continuity between pre-bereavement and bereavement support, the integration of bereavement services within hospices and the involvement of volunteers in bereavement support. It then discusses the engagement of UK hospices in the broader development of bereavement support. Although hospices have developed expertise in supporting bereaved people, our research suggests that they have not had a major impact on other health service providers, such as general practitioners and distinct nurses and staff in acute hospital trusts, in this area.

Adult bereavement in five English hospices: types of support.

METHOD: In-depth organisational case studies of five English hospices. ANALYSIS: Thematic analysis of qualitative interviews and focus groups and scrutiny of documentary material provided by the hospice bereavement services. FINDINGS: All of the hospices ran events where bereaved people met with other bereaved people who had been in contact with the hospice. They all offered some form of more intensive one-to-one support, spiritual support, and ran remembrance events. Three types of one-to-one support were offered: counselling; befriending; support from paid bereavement staff. Ongoing telephone support from trained bereavement volunteers appeared to be an acceptable and cost-effective way of providing low intensity bereavement support. Running social bereavement support groups is difficult and resource intensive. "Drop-in" events appear to perform a useful role for both bereaved people and bereavement services. There seemed to be no readily available sources of support for people with particularly complex bereavement problems. CONCLUSIONS: All of the hospices were offering appropriate types of bereavement support that clearly met Components 1 and 2 of bereavement support in the NICE guidance. In the absence of any agreement about "best practice" for adult bereavement support services it is the integration of bereavement support as a central aspect of hospice activity that is most likely to improve bereavement support for adults in the future.

Adult bereavement in five English hospices: participants, organisations and pre-bereavement support.

METHOD: in-depth organisational case studies of five English hospice bereavement services. ANALYSIS: thematic analysis of qualitative interviews and focus groups and scrutiny of documentary material provided by the hospice bereavement services. FINDINGS: despite the differences in philosophies and activities among the hospices a common pattern of support were apparent. All made contact with the bereaved relatives or main carers shortly after the patient's death, all provided information about practical and emotional aspects of bereavement and a mixture of social and therapeutic support. None of the hospices used formal "risk assessment", but at all sites there were processes in place to identify people who might benefit from bereavement support. Pre-bereavement support and continuity between this and bereavement support were important aspects. CONCLUSIONS: the case studies allowed analysis of individual characteristics and comparison between services. The high response rates suggest that the questionnaires used were acceptable to bereaved people. A clear and explicit rationale for bereavement support activities is a pre-requisite for the development of a cohesive and integrated programme of support to help resolve difficult decisions about individual clients. Pre-bereavement support by hospice staff positively contributes to the person's experience of bereavement. Hospices should address the issue of providing the appropriate level of bereavement support.

Survey of UK hospice and specialist palliative care adult bereavement services.

METHOD: Postal survey of UK hospices and specialist palliative care services providing adult bereavement support. ANALYSIS: Descriptive statistics and content analysis of free text replies. RESULTS: Three hundred services were identified, with 248 valid responses (83%). Of these, 198 (80%) were in England and 180 (73%) were associated with inpatient units. Most had been in existence for at least 10 years. Paid staff were used by 219 services (88%) and volunteers were involved in 168 services (68%). A small minority did not provide supervision for their bereavement staff. A quarter of services had insufficient staff. The most common activities were individual support, telephone support, written information, memorialization events and group support. Ninety-five services (43%) formally assessed the need for individual support. One hundred and fourteen services (51%) had no formal mechanisms for bereaved people to provide feedback about such support. Formal audit and evaluation of bereavement services was uncommon. CONCLUSIONS: The main elements of bereavement support can be identified but their combination varies. Assessment of people for individual support varies and the small size of many services may inhibit the effective delivery of support. Audit and evaluation of bereavement support may need to be developed.

A call to action: an IWG charter for a public health approach to dying, death, and loss.

The current systems of care for dying persons, the people caring for them, and the bereaved operate in ways that frequently lack sufficient sensitivity to their needs. We describe a new model for dying, death, and loss that adopts a public health approach. Specifically, we describe a deliberative process that resulted in a charter for a public health approach to dying, death, and loss. Modeled after the World Health Organization's 1986 Ottawa Charter, our charter includes a call to action. It has the potential to bring about significant change on local, societal, and global levels as exemplified by four projects from three countries. Public health and end-of-life services and organizations need to form partnerships with the community to develop a public health approach to dying, death, and loss. Learning from each other, they will affirm and enhance community beliefs and practices that make death part of life.

Helpful aspects of bereavement support for adults following an expected death: volunteers' and bereaved people's perspectives.

Helpful and unhelpful aspects of bereavement support were investigated from the perspectives of 24 bereaved adults and their volunteer bereavement support workers. Most commonly reported themes were the provision of hope and reassurance, and the opportunity for continued sharing and support. Significantly more clients than volunteers reported provision of information, and talking to someone outside their social network as helpful, and both groups scored higher on helpfulness ratings than comparative groups of psychotherapists and clients. Clients' grieving styles and the quality of the helping relationship were also related to what was seen as helpful.