What should good bereavement service support look like? Findings from pre-pandemic workshop discussions interpreted in the context of the Covid-19 pandemic
Hannah Scott
Medical School, Cambridge University
Stephanie Sivell
Marie Curie Palliative Care Research Centre, School of Medicine, Cardiff University
Mirella Longo
Marie Curie Palliative Care Research Centre, School of Medicine, Cardiff University
Kathy Seddon
Marie Curie Palliative Care Research Centre, School of Medicine, Cardiff University
Jim Fitzgibbon
School of Medicine, Cardiff University
Annmarie Nelson
Marie Curie Palliative Care Research Centre, School of Medicine, Cardiff University
Anthony Byrne
Marie Curie Palliative Care Research Centre, School of Medicine, Cardiff University
Emily Harrop
Marie Curie Palliative Care Research Centre, School of Medicine, Cardiff University. harrope@cardiff.ac.uk
Introduction: There has been a lack of consistency in approaches to bereavement support provision and evaluation. As part of a study which identified outcomes for adult bereavement support services in palliative care, we conducted stakeholder workshops with people from professional and lived experience backgrounds, providing a view on what support interventions should look like.
Aims: The aims of this first workshop were to gather stakeholder views on the purpose, impacts and outcomes of bereavement service support. In this paper we summarise these findings and consider their relevance to bereavement support during and following the Covid-19 pandemic.
Methods: Stakeholders were divided into three groups and asked to consider how support services should help bereaved service users and what good bereavement service support looks like. Key themes were identified from the written and verbal content of the workshop.
Findings: Three main themes emerged from the data; informal support and self-management; the aims and purpose of bereavement service support and the timing, accessibility and quality of support.
Conclusion: Workshop findings align with public health models of bereavement care and recent service standards, identifying core support functions and aspirations for bereavement services. Finding the best mechanisms and modalities for meeting these, in the context of the late/post-pandemic period, presents both challenges and opportunities.
· Core functions for bereavement services include enabling coping and grief management, supporting resilience and social adjustment, and providing practical support and advice.
· Bereaved people experience difficulties with the emotional support available from their friends and family. Services can help by seeking to improve these relationships and the informal support available to people, as well as directly providing opportunities for peer support from fellow bereaved persons, such as bereavement support groups.
· Support should be tailored to individual needs, be accessible to and accommodating of the needs of people from diverse backgrounds and available when needed, rather than according to predetermined timeframes.
· Further research and evaluation is needed to investigate how well services fulfil the support needs and functions identified, in particular with regard to under-served groups. This evidence is especially needed as the bereavement sector negotiates the late/post-pandemic period and the changes seen in bereavement experiences and support provision at this time.
bereavement support, bereavement services, palliative care, grief
Bereavement
support is a core part of health and social care provision (NICE, 2004; WHO,
2002; Aoun et al, 2012; Aoun et al, 2015), and is of heightened importance
during pandemics and other mass bereavement events (Harrop, Mann et al, 2020).
However, the need for better evidence and greater consistency in the delivery
of bereavement services is well recognised, with recent national and
international programmes of work focused on developing sets of service
standards through consensus-building activities with expert stakeholders
(Keegan et al, 2021; Hudson et al, 2018; Bereavement Services Association and
Cruse Bereavement Care, 2013). In an endeavour to improve the quality and
usefulness of the evidence for bereavement interventions we conducted a
multi-methods study which, using a systematic review, stakeholder workshops and
a Delphi Survey, identified two core outcomes for bereavement support services
in palliative care: ‘ability to cope with grief’ and ‘quality of life and
mental wellbeing’. Full results and project methodology are reported in the
main study publication (Harrop, Scott et al, 2020). As part of this project, we
conducted an initial stakeholder workshop focused on identifying and describing
the purpose and impacts of bereavement support. The content of these group
discussions with professional and public stakeholders was rich and insightful,
and much broader in scope than the primary focus on outcome identification that
is reported elsewhere (Harrop, Scott et al, 2020). As such we felt that the
content of these more expansive discussions have timely potential to contribute
to the literature and heightened interest in what good bereavement support
looks like in the context of the Covid-19 pandemic, including the current UK
Commission on Bereavement (bereavementcommission.org.uk).
Previous
research has shown that people who have been bereaved have varying needs for
support, requiring different types of support according to their level of need
(Aoun et al, 2015). Guidelines similarly emphasise that support should match
individual risk and need (Aoun et al, 2017; Bereavement Services Association
and Cruse Bereavement Care, 2013; Hudson et al, 2018). Public health approaches
to bereavement care recognise the differing needs of bereaved people and
recommend a tiered approach to support, similar to the three-component model
outlined by NICE (2004). The first tier/component includes universal access to
information on grief and available services, with bereaved people supported by
existing social networks. The second tier includes structured, reflective
support, appropriate for those with moderate needs, estimated at around 30% of
the bereaved population in non-pandemic times (Aoun et al, 2015). Third-tier
support, including specialist grief, mental health and psychological
interventions will be required by the small minority (around10% non-pandemic)
of people at high risk of prolonged grief disorder and should be targeted
accordingly (NICE, 2004; Aoun et al, 2012; Aoun et al, 2015). However, due to
the unique sets of circumstances associated with the pandemic, such as
traumatic deaths, social isolation and disrupted mourning, bereavement
researchers have predicted and observed increases in the proportions of people
experiencing prolonged grief disorder (PGD) and other mental health problems
(Eisma et al, 2020; Pearce et al, 2021; Boelen et al, 2021; Palliative Care
Australia 2020; Menzies et al, 2020). Lower proportions of people able to cope
with only friend and family support (as per tier one) have also been observed
during the pandemic (Harrop et al, 2021), with high-level needs for emotional
support reported by over half of survey participants bereaved during the
Covid-19 pandemic (Harrop et al, 2021).
Palliative
care providers, such as hospices, typically offer different types of support which cut across these three components. Examples
range from drop-in events and information evenings, telephone support, mutually
supportive groups, individual and group counselling and specialist counselling
for those with more complex needs (Hudson et al, 2018; Field et al, 2004;
Harrop, Morgan et al, 2020). During the pandemic, online chat forums and
support groups, web-based and self-help resources and online/telephone
provision of counselling support were commonly used across the UK, reflecting
the service adaptations that needed to be made in response to infection-control
measures (Harrop et al, 2021; Pearce et al, 2021). The evidence base for
bereavement interventions has historically been limited, with systematic
reviews investigating their effectiveness commonly reporting inconclusive
results and limited effects (eg Forte et al, 2004; Wittouck et al, 2011;
Currier et al, 2008; Jordan & Neimeyer, 2003). However, most have not
considered the qualitative or mixed-methods evidence that is available for the
many different types of bereavement support, and is essential for understanding
intervention mechanisms, contextual influences and the lived experience of
intervention participants, needed to inform service improvement (Harrop, Morgan
et al, 2020). In a mixed-methods systematic review involving thematic synthesis
of qualitative results we identified three core impacts and interventional
mechanisms which cut across intervention types, defined as ‘grief and loss
resolution’, ‘mastery and moving ahead’ and ‘social support’. In line with
public health models, the review confirmed the value and benefits of social
support alongside opportunities for reflection, emotional expression and
restoration-focused activities for those with moderate-level needs and
specialist psychological intervention for those with high-level needs (Harrop,
Morgan et al, 2020).
It is also
proposed that palliative care and bereavement services work in partnership with
community and other organisations, helping bereaved individuals to care for
themselves and enhance the natural support networks that are available to them,
following compassionate communities approaches to end-of-life and bereavement
care (Rumbold & Aoun, 2014; Aoun et al, 2018, 2019; Aoun, 2020; Breen,
Kawashima et al, 2022). Such approaches are especially needed, given the
problems that bereaved people experience getting the informal and formal
support that they need. These include lack of understanding and compassion
among family and friends, and difficulties expressing their feelings and needs
(Aoun et al, 2020, Breen & O’Connor, 2011; Breen et al, 2017). Such
experiences have been intensified during the pandemic due to social distancing
restrictions, lack of opportunity for in-person support and the wider societal
strains of the pandemic (National Bereavement Alliance, 2020; Sue Ryder, 2020,
Harrop et al, 2021; Pearce et al, 2021). Barriers to formal support use
identified before and during the pandemic have included lack of information and
knowledge of how to get support, discomfort or reluctance to seek help from
services and lack of availability of appropriate support (Sue Ryder, 2019;
Wakefield et al, 2020; Harrop et al, 2021). Limited awareness of available
support and a lack of culturally competent services are particular barriers for
people from minority ethnic communities (Mayland et al, 2021; Murray, 2020).
By way of
contribution to this literature and the heightened policy interest in improving
the support available for bereaved people during and following the pandemic, we
report here the broad and insightful discussions which
took place during our first stakeholder workshop. In the discussion section we
consider the relevance and applicability of workshop and full study results to
bereavement support provision in these late/post-pandemic times. In doing so we
draw on findings from a UK study which investigated bereavement experiences
during the Covid-19 pandemic, including data collected from a 13 item support
needs scale directly developed from the outcomes selected and defined in this
study (see Harrop et al, 2021; Selman, Farnell, Longo, Goss, Torrens-Burton et
al, 2022).
A full
description of overall project methodology and aims is provided in the main
study publication (Harrop, Scott et al, 2020). The specific aims of the first
stakeholder workshop were:
· to gather stakeholder views on what
good (component one/two) bereavement service support should look like,
including the type of support that services should offer and the key benefits/impacts
that it should have for service users
· to incorporate these impacts into
outcome lists already produced from a systematic review, prior to their
inclusion in a Delphi Survey (reported in main study publication)
· to invite general comments and
observations relating to the project and subject area.
The
workshop was held in March 2017, and was attended by 21 UK-based delegates from
professional and bereaved/non-professional backgrounds. Delegates were
identified through bereavement provider networks, as well as patent and public
involvement (PPI) networks and researcher contacts. They included academics,
hospice-based counsellors and social workers, representatives from third sector
bereavement organisations and people with recent close bereavement experiences
and experiences of using support services. Delegates were divided into three
groups: group 1 was made up of people with bereavement experiences (n=7; 2
male, 5 female) and groups 2 and 3 were made up of professional stakeholders
(n=14).
In the
first breakout session, which is the focus of this paper, we used a modified
nominal group technique to structure the discussions (eg Harvey & Holmes,
2012). Group members were asked to individually identify three ways in which
they believed a support service should help (impact) their service users. Each
person was asked to read out their chosen ‘impacts’ to the rest of the group,
along with an explanation of why they had chosen them. Of the two group
facilitators assigned to co-ordinate and direct discussion, one captured the
impact and its definition on a flipchart, while the other made more detailed
notes on the group discussion that took place. Once all impacts had been
documented on the flipchart, the group was asked to group these impacts thematically,
with further discussion around these different types of impacts and the more
general role and function of bereavement support. In the afternoon session
these impacts were mapped to outcome lists produced from a systematic review,
before their inclusion in a Delphi exercise, the details of which are reported
elsewhere ((Harrop, Scott et al, 2020). Flipcharts and researcher notes from
the group discussions were analysed thematically and summarised in a report by
two researchers, identifying points of agreement and consensus within and
across the three groups. Sessions were audio-recorded but not transcribed, with
recordings used by researchers following the event to check the accuracy of the
notes. The summary report was reviewed by the team of workshop facilitators and
sent to all participants following the event.
Two PPI
representatives (public contributors) were actively involved in all stages of
the project. They helped to refine the research question and the study
protocol, ensuring that research design, methods and
study materials were appropriate for the study participants, in particular
bereaved people. The public contributors helped to recruit bereaved workshop
participants and facilitated group discussions at this first workshop,
contributing their own experiences and views to these discussions. They were
pivotal in making sure that explanations and materials used on the day were
accessible and could be understood by non-professional stakeholders.
Cardiff
University School of Medicine Research Ethics Committee approved the project.
Written informed consent was taken from participants at the start of the
workshop, following provision and explanation of study information sheets.
The
findings from the workshop are grouped under three thematic headings:
self-management and informal support; the aims and purpose of formal
bereavement service support; the timing, quality and accessibility of support.
Summary tables containing the verbatim bullet points that were documented on
flipcharts by each group and sent to participants following the event are
provided in the supplementary file.
The three
groups drew a distinction between formal and informal networks of support.
Informal support, particularly from people who could offer shared experiences
and understanding, was identified as important for those dealing with grief.
The social side of this – for example, mixing with other people, having
gatherings of bereaved carers etc – offered a way out of the loneliness and
isolation that accompanies a bereavement and can help the person feel able to
cope with day-to-day life.
Members of
the bereaved group described how informal peer-based support such as coffee
mornings hosted by funeral directors and online support groups (for younger
members) helped them to cope with the aftermath of bereavement. It was
explained that online support groups can mitigate any
physical disability or social anxiety that the person may have. It was
considered a positive that they were peer-based, rather than professional, as –
similar to in-person gatherings – they enabled people to feel comfortable
talking to others who were also experiencing bereavement. This was seen as
particularly important given the difficulties that participants in the bereaved
group experienced in managing the expectations of others, including the beliefs
of friends and family members that they should be ‘getting over’ their grief.
They described the further negative impacts of commonly-used
expressions, such as ‘it was God’s will’, or ‘everything happens for a reason’,
which were perceived as insensitive, harmful and distressing.
Self-management
strategies identified as beneficial by bereaved participants included
mindfulness and meditation, which helped to separate the person from their
thoughts. Some members of this group also believed that visiting the deceased’s
grave could be therapeutic. Similarly, holding onto items that reminded them of
the deceased, such as photographs or clothing, were felt to offer comfort and
positive memories of the person. Some members of the bereaved group discussed
the importance of work as a form of self-management. Having a job was perceived
as a helpful distraction from grief, and participants who were retired
struggled to cope with the amount of time they found themselves with each day
following their bereavement. It was also stressed, however, that employers
needed to be flexible in allowing for bereaved individuals to take as much time
off as was needed – which, it was agreed, would vary from person to person.
Managing grief and enabling coping and
resilience
The groups
were asked to consider the types of support provided by bereavement services,
in particular what this support should look like and how it should be helping
service users. All three groups stated the need for support services to
strengthen resilience and to help bereaved people manage and cope with, rather
than ‘treat’ grief. As part of this, the bereaved and professional groups
believed that services should be aiming to normalise the grieving process by
enabling knowledge and understanding about grieving and providing reassurance
that what they were feeling was normal. Bereaved participants described how they
needed to be told that they were not ‘failing’ and that the ‘bad’ days where
they were overwhelmed by feelings of inadequacy or the inability to cope were
all part of the grieving process.
Members of
the bereaved group stressed the importance of experiencing emotions associated
with grief, such as sorrow, which they perceived as a positive expression of
love for the deceased person. Some also described a need for help with
‘channelling’ negative emotions such as anger which
can stem from negative care and end-of-life experiences. The professional group
also saw a role for services in helping people to ‘identify and validate the
positive consequences of loss’, to be able to remember and talk about the
deceased without becoming overwhelmed and helping them to find meaning in and
make sense of their loss and experiences. However, both bereaved and
professional participants also stressed the importance of services identifying
when someone had passed from what would be considered ‘normal’ grieving, to
something more prolonged and serious, with service users supported to identify
maladaptive thought and behaviours. Likewise, professional participants also
felt that services should encourage ‘self-directed recognition of wanting to
end sessions’ to avoid problems with dependency and unnecessarily pathologising
their grief.
Facilitating social adjustment, improved
relationships and wellbeing
All groups
believed that services should help bereaved people to manage and maintain their
relationships with others, and generally improve wellbeing. This was understood
to mean helping people to feel able to ‘face the future’ (bereaved group) and
make ’incremental moves from hopelessness to optimism’ (professional group).
Professional participants described a role for services in supporting the
re-emergence of self-identity following a bereavement, and the individual’s
ability to return to normal social roles and interactions with others, as well
as equipping service users with coping and lifestyle strategies. The need for
support services to address social isolation and improve social connectedness
was also emphasised. The benefits of group-based support and being listened to
by those with shared experiences, empathy and understanding were described in
all three groups, but there was also felt to be a role for services in
improving family-based support, enabling bereaved people to be better supported
by their existing networks. One member of the bereaved group felt that she
would have benefited from training on how to support her daughter, following
the death of her ex-husband/father to their daughter. Professional participants
identified ‘understanding others’ behaviours and actions’ and ‘managing
conflict and misunderstandings relating to different ways of dealing with
grief’ as important for enabling better relationships and communication within
families. It was also noted that support services should consider the needs of
those with additional caring responsibilities, and the impact this may have on
bereavement experiences.
Providing practical support and advice
Practical support was seen as important as emotional support by bereaved
and professional participants, with bereaved participants feeling that this was
often overlooked.
Examples of such support given by bereaved participants included help with the
practicalities in the event of disputes or legal action, and the provision of
information packs with details of necessary support services for bereaved
families. Professional participants in both groups stressed the importance of
helping bereaved people to deal with financial and social insecurities if
needed, especially in socially disadvantaged communities, where these needs
could be more acute than emotional support needs.
Having the
right support at different stages of the illness/bereavement process was vital.
Professional and caregiver groups described the importance of having allocated
support for carers during the end-of-life stage. One bereaved participant
perceived that he was given false hope, and that there was a mismatch between
the reality of his wife’s illness – for which there were limited treatment
options – and the information he was given. He felt that the impact of his
wife’s death was worse because he had been equipped with unrealistic
expectations. Relatedly, people in the bereaved group perceived much of the
discourse and terminology on cancer to be damaging. Terms such as ‘fight’ or
‘battle’ implied that cancer could be overcome if the person was mentally strong
enough. This could then lead to feelings of guilt when defeat was accepted. All
groups stressed the need for more support to be available post-death. The
bereaved group felt that there was reasonable support when the patient was
unwell or dying, but that this disappeared afterwards, leaving the bereaved
person isolated. For those with no family, the loneliness was particularly
acute, and these people had a pressing need for support services.
The timing
of support was seen as important, with professional and bereaved participants
describing how people have different support needs at different times.
Participants in the bereaved group explained how support may not be needed
immediately post-bereavement, but might be six months later. Grief was unpredictable
and active interventions at different time points should always be available; a
‘low’ period can strike at any time. People do not overcome grief,
they learn to live with it, hence the need for longer-term support.
Professional participants similarly spoke of the need for formal offers of
support at later stages, but that there was no fixed or right time to offer
support, which should be made be available when needed rather according to
prescribed time frames.
Professionals
described the importance of an individualised approach to support, which
focused on individual needs and differences, with services establishing what
each person wanted to get out of the support. There is no
one-size-fits-all and there needs to be a range of support available,
accessible when needed. Participants in the professional groups also described
the need for services to understand how different spiritual and belief systems
and cultural and religious identities shape bereavement experiences and to be
committed to equity of service provision across socio-cultural groups. One of
the professional groups discussed the importance of the organisational culture
of a support service, including a commitment to evidence-based knowledge and
the bereavement care standards, and adequate provision of staff training and
development.
Professional
and bereaved groups emphasised the importance of removing barriers to support
use. Professionals described a need for accessible information about grief and
services, better signposting, collaboration and partnership-working between
healthcare and bereavement services, including a role for bereavement services
in influencing public and professional (eg GPs’) understandings of grief and
how to manage it. The bereaved group similarly explained that support services
should be better publicised, so that bereaved people knew they were there, as a
‘safety net’, even if they chose not to use them.
These
workshop group discussions, conducted as part of a larger study on bereavement
support outcomes, provide insight into the role, purpose and delivery of
informal and formal support for bereaved people, from the perspectives of
bereaved, service provider and academic stakeholders. Key findings include the
importance of, and difficulties with informal social support and consistent
with the full study results, the supportive role for services in enabling grief
management, coping, resilience and adjustment, as well as providing practical
support and advice to bereaved people. The need for individualised support to
be accessible and available from pre-bereavement onwards, without prescribed
timeframes was also discussed. These themes align with public health models of
bereavement care and service standards recently developed, as well as support
needs identified for people bereaved during the Covid-19 pandemic, adding to
the literature and heightened policy interest in what good bereavement support
looks like in these late/post-pandemic times.
There was
strong agreement across professional and bereaved groups that support services
should be concerned with promoting resilience and helping bereaved people to
manage and cope with their grief rather than attempting to ‘treat’ grief. To
achieve these goals, services should enable knowledge and understanding about grief
reactions, provide reassurance and help to normalise (rather than pathologise)
grief experiences. Services have a role in helping people to remember their
loved ones without feeling overwhelmed and in helping them to find meaning in
and make sense of their loss and experiences. These sentiments were confirmed
in the wider consultation exercises and full study results
which confirmed two main outcomes ‘ability to cope with grief’ and
‘quality of life and mental wellbeing’. The selected outcome dimensions that were associated with the first outcome ‘ability to
cope’ included ‘acceptance of grief experiences as normal’; ‘understanding,
acceptance, finding meaning in loss’; ‘positive reminiscence and remembering of
the deceased’ (Harrop, Scott et al, 2020). These support functions also fit
well with interventional mechanisms relating to ‘loss and grief resolution’
that were identified in a recent systematic review (Harrop, Morgan et al, 2020)
and theoretical models which emphasise loss-oriented coping and the critical
role of meaning reconstruction within this (Stroebe and Schut, 1999; Neimeyer,
2001).
These
support functions appear also to reflect the needs of people bereaved during
the Covid-19 pandemic. The unprecedented social and clinical restrictions introduced
to control the spread of the virus meant that bereaved people experienced
profound disruption to end-of-life, death and mourning practices, and in turn
found it harder to process their feelings, find closure and begin to grieve,
often themselves reflecting on the ‘uniqueness’ of pandemic grief (Harrop et
al, 2021; Selman, Farnell, Longo, Goss, Torrens-Burton et al, 2022;
Torrens-Burton et al, 2022). The ‘disrupted meaning’ caused by such experiences
was identified as a factor contributing to worse grief outcomes in a US study
(Breen, Mancini et al, 2022) and it is striking that the highest level of
support need reported in the UK study was for ‘dealing with my feelings about
the way my loved-one died’, followed by ‘dealing with my feelings about being
without my loved-one’ (Harrop et al, 2021). Such findings suggest the critical
role for bereavement services in supporting meaning-making
at this time, but also the unique pandemic-related challenges associated with
achieving this, including the possibilities for understanding grief experiences
as ‘normal’. When supporting people bereaved during the pandemic providers need
to recognise and respond to context-specific differences in people’s grieving
during these unprecedented times; a need articulated by people bereaved both
during the pandemic and other mass-bereavement events (Harrop et al, 2021;
Harrop, Mann et al, 2020). These pandemic research findings also add weight to
the important role described for services in identifying and responding to those
with prolonged and serious grief symptoms (NICE, 2004; Aoun et al, 2015),
recognising the higher proportions of bereaved people likely to require more
specialised interventions (Palliative Care Australia, 2020; Eisma et al, 2020;
Boelen et al, 2021; Menzies et al, 2020).
The
identified role for services in helping bereaved people to become more
optimistic and experience improvements in their identity, functioning and
relationships is consistent with the second outcome that was selected and
defined at the end of the study, ‘quality of life and mental wellbeing’.
Dimensions associated with this outcome included; participation in work/daily
activities, social functioning and relationships and sense of meaning, purpose,
optimism and hopefulness. This role similarly reflects the interventional
impacts of ‘mastery and moving ahead’ observed in a recent systematic review
(Harrop, Morgan et al, 2020), conceptualisations of ‘balanced’ responses to the
emotional and practical consequences of loss (Machin, 2001) and the construct
of ‘restoration-oriented’ coping, as defined in the dual process model of
bereavement (Stroebe and Schut, 1999). This model describes how people
oscillate between dealing with the loss of the deceased person and negotiating
the practical and psychosocial changes to their lives that occur as a result of
the bereavement (restoration-oriented coping) (Stroebe and Schut, 1999). These
support functions also align with the psychosocial support needs reported by
pandemic-bereaved survey participants, most of whom reported moderate- to
high-level needs for help with ‘finding balance between grieving and other
areas of life’, ‘regaining sense of purpose and meaning in life’ and with
‘managing and maintaining my relationships with friends and family’ (Harrop et
al, 2021). Specific pandemic-related disruption to restoration-oriented coping,
including the difficulties bereaved people face finding new meaning, purpose or
respite from their grief at times of social restrictions and anxieties relating
to the virus have also been observed (Stroebe & Shut, 2021; Torrens-Burton
et al, 2022). This again suggests both the importance and the challenges of
providing support which meets these needs during times
of pandemic and beyond.
As in
previous research, the value and benefits of social support for enabling coping
were well recognised (Aoun et al, 2018; 2019), with online and in-person peer
support groups enabling bereaved people to connect with those with shared
experiences, helping them to feel understood and less isolated (Harrop, Morgan
et al, 2020; Harrop, Mann et al, 2020, Harrop et al, 2021). Such opportunities
were especially valued given the difficulties that both bereaved and
professional participants recognised with the informal support available from
existing social networks. These observations are consistent with other research
findings (Aoun et al, 2020; Breen & O’Connor, 2011, Breen et al, 2017,
Harrop et al, 2021) and the high-level needs for help with ‘loneliness and
social isolation’ and ‘expressing feelings and feeling understood by others’
reported by people bereaved during the Covid-19 pandemic (Harrop et al, 2021).
These findings therefore also suggest the value of developing a compassionate
communities approach to bereavement support, which empowers communities and
existing social networks to better support bereaved members, rather than
focusing exclusively on specialist palliative care or bereavement services to
provide support (Aoun et al, 2018; 2019). Practical and financial support was
also seen as an important part of bereavement service provision, particularly
in socially disadvantaged areas, an observation again mirrored in full study
results (Harrop, Scott et al, 2020). In the pandemic survey
findings, just under half of bereaved participants experienced moderate to
high-level needs for support with ‘getting relevant information and advice,
e.g. legal, financial, available support’ (Harrop et al, 2021).
Difficulties relating to death administration and accessing support were also
commonly described (Torrens-Burton et al, 2022), again suggesting the need for
this type of support to be widely available during and following the pandemic.
In line
with recent support standards (Hudson et al, 2018; Bereavement Services
Association and Cruse Bereavement Care, 2013) and previous research (Aoun et
al, 2017), the workshop participants emphasised the need for individualised
approaches, which respond to the unique and varying needs of individuals, and
culturally competent approaches which understand how different cultural and
religious identities and beliefs shape bereavement experiences (Murray, 2020;
Mayland et al, 2021; Harrop, Morgan et al, 2020; Harrop, Mann et al, 2020;
Selman, Sutton et al, 2022). This is of especial importance given the
differential impacts of the pandemic on minority ethnic communities and the
related need for support which is both cultural and crisis competent (Harrop et
al, 2021; Selman, Sutton et al, 2022). Consistent with review and survey findings
(Aoun et al, 2017; Harrop, Morgan et al, 2020), and the principle of
individualised and person-centred approaches, there was agreement that there is
no fixed or right time to offer support, which should be made be available
according to self-identified need rather than pre-determined timeframes. Better
co-ordination and collaboration between statutory and voluntary services, and
information and signposting to services (eg via GP practices, community
pharmacies) is also needed to address some of the barriers to accessing
support, including lack of knowledge or understanding of bereavement support
options and services, as identified in pandemic and pre-pandemic times (Sue
Ryder, 2019; Wakefield et al, 2020; Harrop et al, 2021).
This phase
of the study had a number of strengths. Using open discussion groups it
captured the perspectives of bereaved individuals, as well as bereavement
professional and academic stakeholders, with views generally well aligned
across groups. In addition to generating ideas on outcomes and outcomes
dimensions, which were ultimately incorporated into lists included in the
Delphi survey, these more broadly focused discussions also captured views on
key features of service function and delivery, while also providing a more
contextualised consideration of bereavement service outcomes. A limitation of
the workshop was that there was just one group of bereaved/public stakeholders,
involving only two men and no participants from minority ethnic backgrounds.
This meant that these perspectives and experiences were unfortunately lacking,
as in other studies (eg Harrop et al, 2021; Mayland et al, 2021). However,
bereavement professionals working in areas which were
ethnically diverse and socially disadvantaged brought their experiences
of working with these communities to the discussions. As demonstrated here many
of the observations made during the consensus day were also validated through
the Delphi exercise (n=240), involving a much larger number of bereaved
participants (n=69) (Harrop, Scott et al, 2020). Indeed, it is notable that the
workshop observations proved pivotal to the overall study results, clearly
underlining the importance of using qualitative methods to capture stakeholder
views, and using these as a key element of the consensus-gathering process
(Harrop, Scott et al, 2020).
Further
research and evaluation is needed to investigate how well services and
interventions meet the support needs and fulfil the functions identified in
this paper, and in turn achieve the associated coping and wellbeing outcomes
that were defined in the wider study (Harrop, Scott et al, 2020). By seeking to
advance understandings of context-mechanism-outcome relationships, defined in
realist evaluation methodology, and addressing the related question; what works, for whom, in what circumstances and why?
(Pawson et al, 1997; 2005), the usefulness and practical relevance of the
evidence-base for service design and delivery could be greatly enhanced. Given
the considerable adaptations and innovations that have been made to services as
a result of pandemic restrictions (Pearce et al, 2021; NBA, 2020), this
evidence will be all the more salient as the bereavement sector negotiates and
plans for the late/post-pandemic period. Increasing the representation of
diverse socio-cultural groups within future research is also critical for
effectively answering these questions and developing services that meet the
needs of groups that have historically been less well served by bereavement
organisations.
These
workshop findings support tiered public health models and compassionate
communities’ approaches to bereavement support (Aoun et al, 2012; Rumbold &
Aoun, 2014; Breen et al, 2022), sharing similarities with service standards
recently developed (Hudson et al, 2018) and aligning well with the support
needs of people bereaved during the Covid-19 pandemic (Harrop et al, 2021).
They confirm the importance of social support for bereaved people, and the role
of bereavement services in enabling coping, resilience and adjustment, as well
as providing practical support and advice. Support should be tailored to
individual needs, be widely accessible and accommodating of the needs of people
from diverse sociocultural backgrounds, and available at different stages of
the bereavement process. Identifying and responding to those with more complex
grief or mental health problems is also vital. Finding the best mechanisms and
modalities for fulfilling these support functions and aspirations, in the
context of pandemic-impacts on bereavement experiences and services is both the
challenge and opportunity of the moment.
Our sincere
gratitude goes to all of our research participants and the many organisations which assisted with this research, including
Cruse Bereavement Care, Hospice UK, Marie Curie and the National Bereavement
Alliance. We also thank Kristen Thomas, Luke Cowey, Ankita Rai and Maria
Giovanna Palmieri for their work on the project.
This study was funded by a Marie Curie Research Grant (grant reference
MCCC-RP-16-A20999). The project was also supported by Marie
Curie core grant funding to the Marie Curie Research Centre, Cardiff University
(grant reference: MCCC-FCO-11-C). EH, AN, AB, SS, ML posts are supported by
Marie Curie core grant funding (grant reference: MCCC-FCO-11-C).
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