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Bereavement care provision in palliative care – a European descriptive and consensus-building exercise

Summary

Phase 1 of the project is a survey of bereavement services in palliative care in Europe.
The questionnaire for the survey was sent to all the national organisations in palliative care across Europe during the week beginning November 18th, 2013. This survey is now closed and we would like to thank all of the people who responded for their contributions. Findings have been published, see below.

Phase 2 Literature and data-based recommendations have been compiled and reviewed by Expert Advisory Group (Delphi Round 1, end of 2016).

Recommendations have been distributed to expert panel across Europe to test consensus (Delphi Round 2, February 2017)

Delphi Round 3 is currently underway. 

Aims & objectives

1. Develop a baseline description of current bereavement care in palliative care services in Europe COMPLETED
2. Formulate recommendations for bereavement care principles, structures, processes and delivery based on current practice and evidence  COMPLETED
3. Establish a consensus on these recommendations UNDERWAY

Background

Bereavement care is an explicit aspect of holistic palliative care which extends to caring for those who are important to the patient (WHO, 2002). Bereavement care ensures that families and significant others are supported from the time of diagnosis and in the time after the patient’s death. It may involve information, practical support, social support and for some, counselling and psychological support. US, Canadian, Australian, British and European models of bereavement care have developed since the beginning of the modern hospice movement in the 1960s. These models involve a range of approaches to, assessments for and provision of bereavement care which include individual, family and group interventions and volunteer supports. (Field et al 2004; O’Connor et al 2009; Aranda and Milne, 2000; Relf, Machin and Archer, 2010) In addition, bereavement supports vary in the extent to which they interact with community models of bereavement support and primary care (Field et al 2007), the constituency they serve (i.e. only hospice-bereaved families or open to whole community) and in the extent to which they can be described as targetted at those in need, those already experiencing difficulty or universally open to all (NICE, 2004, Currier et al, 2008; Schut and Stroebe 2005, Aoun et al, 2012). In pracitice bereavement care may also be offered in an ad-hoc manner, relative to the resources and skills of the service. Informal and broad community support intiatives can provide responsive care, which fits with tradition and a community’s natural way of doing things.


Moreover, while bereavement care is properly of the remit of all care professionals in palliative care, there is variation in the disciplines which lead the development of bereavement services internationally – including social work, psychology, nursing, counselling, chaplaincy, and volunteer coordinators.
While some literature is available on how bereavement services have evolved and developed in the West, there is little available as yet on Eastern Europe and further afield. In addition, there is some concern that what we know about bereavement is biased in favour of the white, western female experience and is based primarily on clinical populations (Wortman and Silver, 2001).


Current thinking links bereavement care to a public health approach. Only small proportions of bereaved people require psychotherapeutic intervention (circa 10 to 15%), a somewhat larger proportion may benefit from trained volunteer and/or professional listening & support service and all could utilise enhanced information, assurance and communication (NICE, 2004; Aroun, 2012). A public health approach seeks to make sure people get the help that is matched to their need.

This taskforce aims to: 
1) describe current practices for adult bereavement services in palliative care settings; COMPLETE
2) develop a set of broad recommendations and,  COMPLETE
3) develop a European consensus. UNDERWAY

The taskforce is underpinned by the following principles:
- to maintain a broad perspective such that the taskforce has relevance across Europe, regardless of economic development, the extent of formal palliative care development and the wider health and social care systems
- to develop the taskforce by describing current practice and exploring feasible pathways for development
- to produce practical recommendations which are based in best evidence
- to promote the integration of bereavement support in palliative care with the broader community – including primary care, community and voluntary care.

Aims and associated methods
1. Develop a baseline description of current bereavement care in palliative care services represented in the EAPC – in Phase One we surveyed known bereavement service providers and convened a discussion group at EAPC congress (2013). The survey facilitated cross-country comparison, it was distributed through national palliative care associations with representation from the three regions outlined in the EAPC Atlas and supported by EAPC existing taskforces. 
2. Develop a statement of recommendations for best practice in bereavement care based on current practice and evidence – in Phase Two statements based on literature and survey data have been complied and  reviewed by an expert advisory group (Round one Delphi)

3. Seek a consensus on these recommendations – Recommendations have been distributed to a panel of bereavement practitioners, managers and services across Europe (Round two Delphi) and results are now being prepared for Round 3

The overall goal is to promote best practice in bereavement care as a core objective of palliative care across Europe. 

The taskforce involves a core taskforce steering committee (comprising co-chairs, one link member from each of the social work and recently completed psychology taskforces and expert members from European countries), a membership of interested parties and an advisory group drawn from practice, policy and academic representatives spanning a range of disciplines.

The advisory group has reviewed and commented in detail on recommendations and statements of best practice prior to their circulation for consensus through a Delphi process.  (February 2017). 

References

- Aoun, S. M., L. J. Breen, et al. (2012) A public health approach to bereavement support services in palliative care. Australia and New Zealand Journal of Public Health 36(1): 14-6.
- Aranda, S. and D. Milne (2000). Guidelines for the assessment of complicated bereavement risk in family members of people receiving palliative care. Melbourne, Centre for Palliative Care.
- Boulkedid R, Abdoul H, Loustau M, Sibony O, Alberti C (2011) Using and Reporting the Delphi Method for Selecting Healthcare Quality Indicators: A Systematic Review. PLoS ONE 6(6): e20476. doi:10.1371/journal.pone.0020476

Currier, J. M., J. M. Holland, et al, (2007) The effectiveness of bereavement interventions with children: a meta-analytic review of controlled outcome research. Journal Clinical Child and Adolescent Psychology 36(2): 253-9.

- Diamond, I., Grant, R., Feldman, B et al (2014) Defining consensus: A systematic review recommends methodologic criteria for reporting of Delphi studies  Journal of Clinical Epidemiology 67 (2014) 401-409

- Field, D., Reid, D et al. (2004). Survey of UK hospices and specialist palliative care adult bereavement services. International Journal of Palliative Nursing 10: 569 - 576.
- Field, D., Payne, S et al. (2007). Some issues in the provision of adult bereavement support by UK hospices. Social Science & Medicine 64(2): 428-38.

Junger, S., Payne, S., Brine, J., Radbruch, L. And Brearly S (2017) Guidance on conducting and reporting Delphi studies in palliative palliative care: recommendations based on a methodological systematic review.  Palliative Medicine    Feb 1:269216317690685. doi: 10.1177/0269216317690685. [Epub ahead of print]
- National Institute for Clinical Excellence (NICE) (2004) Guidance on cancer services; Improving supportive and palliative care for adults with cancer (The Manual). London: National Institute for Clinical Excellence
- Relf, M., Machin, L and Archer, N (2010) Guidance for Bereavement Needs Assessment In Palliative Care. London, Help The Hospices
- O'Connor, M., J. Abbott, et al, (2009). A comparison of bereavement services provided in hospice and palliative care settings in Australia, the UK and the USA. Progress in Palliative Care 17(2): 69-74.
- Schut, H. and Stroebe M (2005). Interventions to enhance adaptation to bereavement. Journal of Palliative Medicine 8 Suppl 1: S140-7.
- Watson, M, Lucas C. et al (2009) Oxford handbook of palliative care. Oxford: Oxford University Press
- Wortman, C.B. and Silver, R.C. (2001) The Myths of Coping with Loss Revisited. In: Stroebe, M.S., Hansson, R.O., Stroebe, W. and Schut, H. Handbook of Bereavement Research: Consequences, Coping and Care. Washington, DC: APA

Milestones

The work is being conducted in two phases. Phase one is descriptive and phase two is consensus building.  

  • Phase 1 (the survey) is now complete and has been presented at EAPC Congress (Copenhagen, May 2015;  Dublin June 2016) and has been published in European Journal of Palliative Care
  • Phase 2 (recommendations) Literature and data-based recommendations were drafted, reviewed by expert advisory committee and agreed in December 2016.
  • Phase 2 (consensus) A Delphi process began in February 2017, Round two has been completed.

Related pubblications

Title Published Author Source More information
EAPC Bereavement Taskforce publishes largest international survey of bereavement care provision in Europe 08-07-2015 Mai-Britt Guldin  EAPC blog, July 8, 2015  Read More........
Title Published Author Source More information
Bereavement care provision in Europe: a survey by the EAPC Bereavement Care Taskforce 06-07-2015 Mai-Britt Guldin  Eur J Pall Care 2015; 22(4) 185 - 189  Read More........
Title Published Author Source More information
What do we know about bereavement care in palliative and hospice services across Europe? 02-12-2013 Irene Murphy and Orla Keegan  EAPC blog, December 2, 2013  Read More........
 

Chairs

Irene Murphy
Marymount University Hospice
Cork, Ireland

click here to contact by email

Orla Keegan
Irish Hospice Foundation
Dublin, Ireland

click here to contact by email

Steering committee

Inger Benkel (Sweden)

Mai-Britt Guldin (Denmark)

Joaquin Limonero (Spain)

Marilyn Relf (UK)

 


 

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