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.
NeimeyerRA. Grief therapy and research as essential tensions: prescriptions for a progressive partnership. Death Stud2000; 24(7): 603–610.
2.
NeimeyerRA. Meaning reconstruction in the wake of loss: evolution of a research program. Behav Change2016; 33(2): 65–79.
3.
HarrisD. “Oppression of the bereaved: a critical analysis of grief in Western society. Omega (Westport)2010; 60(3): 241–253.
4.
StroebeMSchutHStroebeW. Health outcomes of bereavement. Lancet2007; 370(9603): 1960–1973.
5.
PrigersonHGHorowitzMJJacobsSC, et al. Prolonged grief disorder: psychometric validation of criteria proposed for DSM-V and ICD-11. PLoS Med2009; 6: e1000121.
6.
ShearMK. Complicated grief. N Engl J Med2015; 372(2): 153–160.
7.
World Health Organization. International classification of diseases for mortality and morbidity statistics. 11th revision ed. (ICD-11). Geneva: WHO, 2018.
8.
SchutHStroebeMS. Interventions to enhance adaption to bereavement. J Palliat Med2005; 8(supplement 1): S140–S147.
9.
CurrierJMNeimeyerRABermanJS. The effectiveness of psychotherapeutic interventions for bereaved persons: a comprehensive quantitative review. Psychol Bull2008; 134(5): 648–661.
10.
AounSMBreenLJO’ConnorM, et al. A public health approach to bereavement support services in palliative care. Aust N Z J Public Health2012; 36(1): 14–16.
11.
AounSMBreenLJHowtingDA, et al. Who needs bereavement support? A population based survey of bereavement risk and support need. PLoS One2015; 10(3): e0121101.
KerslakeDChaplinDHartleyJ, et al. New bereavement care service standards. Bereave Care2014; 33(1): 28–32.
14.
HallCHudsonPBougheyA. Bereavement support standards for specialist palliative care services. Department of Health SGoV, editor. Melbourne, Australia: Victorian Government, 2012. pp.1–31.
15.
HudsonPHallCBougheyA, et al. Bereavement support standards and bereavement care pathway for quality palliative care. Palliat Support Care2018; 16(4): 375–387.
16.
FieldDPayneSRelfM, et al. Some issues in the provision of adult bereavement support by UK hospices. Soc Sci Med2007; 64(2): 428–438.
17.
GuldinMMurphyIKeeganO, et al. Bereavement services in palliative care in Europe: a survey study by the European Association for Palliative Care bereavement taskforce. Eur J Palliat Care2015; 22(4): 185–189.
18.
JüngerSPayneSABrineJ, et al. Guidance on conducting and REporting DElphi studies (CREDES) in palliative care: recommendations based on a methodological systematic review. Palliat Med2017; 31(8): 684–706.
WallerATuronHMansfieldE, et al. Assisting the bereaved: a systematic review of the evidence for grief counselling. Palliat Med2016; 30(2): 132–148.
21.
MaerckerABrewinCRBryantRA, et al. Proposals for mental disorders specifically associated with stress in the International Classification of Diseases-11. Lancet2013; 381(9878): 1683–1685.
22.
LytjeMDyregrovA. The price of loss – a literature review of the psychosocial and health consequences of childhood bereavement. Bereave Care2019; 38(1): 13–22.
23.
AounSMBreenLJWhiteI, et al. What sources of bereavement support are perceived helpful by bereaved people and why? Empirical evidence for the compassionate communities approach. Palliat Med2018; 32(8): 1378–1388.
24.
ParkesCMWeissRS. Recovery from bereavement. New York: Basic Books, 1983.
25.
Parkes C. Scientific historical overview of the scientific study of bereavement. In: StroebeMSHanssonROStroebeWE, et al. (eds) Handbook of bereavement research: consequences, coping, and care. Washington: American Psychological Association, 2001, pp.24–45.
26.
NielsenMKCarlsenAHNeergaardMA, et al. Looking beyond the mean in grief trajectories: a prospective, population-based cohort study. Soc Sci Med2019; 232: 460–469.
27.
RumboldBAounS. Bereavement and palliative care: a public health perspective. J Palliat Care2014; 22(3): 131–135.
28.
StroebeMSchutHBoernerK. Cautioning health-care professionals: bereaved persons are misguided through the stages of grief. Omega (Westport)2017; 74(4): 455–473.
29.
KeeganOGuldinMBMurphyI, et al. How are decisions made about bereavement support in palliative care? – investigating theoretical models & decision-making processes: abstract number: P170 abstract type: poster discussion. Palliat Med2016; 30(6).
SealeyMO’ConnorMAounSM, et al. Exploring barriers to assessment of bereavement risk in palliative care: perspectives of key stakeholders. BMC Palliat Care2015; 14(1): 49.
32.
SealeyMBreenLJO’ConnorM, et al. A scoping review of bereavement risk assessment measures: implications for palliative care. Palliat Med2015; 29(7): 577–589.
33.
AgnewAManktelowRTaylorB, et al. Bereavement needs assessment in specialist palliative care: a review of the literature. Palliat Med2010; 24(1): 46–59.
34.
DiamondHLlewelynSRelfM, et al. Helpful aspects of bereavement support for adults following an expected death: volunteers’ and bereaved people’s perspectives. Death Stud2012; 36(6): 541–564.
35.
GuldinMBO’ConnorMSokolowskiI, et al. Identifying bereaved subjects at risk of complicated grief: predictive value of questionnaire items in a cohort study. BMC Palliat Care2011; 10: 9.
36.
AounSMBreenLJRumboldB, et al. Matching response to need: what makes social networks fit for providing bereavement support?PLoS One2019; 14(3): e0213367.
37.
AounSMKeeganORobertsA, et al. The impact of bereavement support on wellbeing: a comparative study between Australia and Ireland. Palliat Care Soc Pract2020; 14: 1–14.
38.
KillikellyCSmidGEWagnerB, et al. Responding to the new international classification of diseases-11 prolonged grief disorder during the COVID-19 pandemic: a new bereavement network and three-tiered model of care. Public Health2021; 191: 85–90.
39.
DoughtyEA. Investigating adaptive grieving styles: a Delphi study. Death Stud2009; 33(5): 462–480.
40.
BoulkedidRAbdoulHLoustauM, et al. Using and reporting the Delphi method for selecting healthcare quality indicators: a systematic review. PLoS One2011; 6(6): e20476.
41.
GargonECrewRBurnsideG, et al. Higher number of items associated with significantly lower response rates in COS Delphi surveys. J Clin Epidemiol2019; 108: 110–120.
42.
HarropEScottHSivellS, et al. Coping and wellbeing in bereavement: two core outcomes for evaluating bereavement support in palliative care. BMC Palliat Care2020; 19: 29.
