The
experience and support needs of adult family members who face a sudden adult
death: A systematic review study
Audrey Stephen
Lecturer, School of Nursing, Midwifery Paramedic Practice, Robert Gordon University, Aberdeen
a.i.stephen@rgu.ac.uk
Fiona Baguley
Lecturer, School of Nursing, Midwifery and Paramedic
Practice, Robert Gordon University, Aberdeen
· Further research: while there is developed understanding of support needs and services for those family members who experience an expected death (cancer) or the death of a child under 16, there is lack of understanding of the particular experience and needs of those family members for whom the death of an adult relative was sudden, and implications for service delivery and professional support.
· Educational needs: responders who attend at the time of a sudden death of an adult family member, or in the short term afterwards should understand the important part they play in enabling the bereaved close family members to cope with the immediate situation and the resulting grief, bereavement and healing processes.
·
Development of services and information that is
widely and easily accessible: public information development and dissemination
is required for adults who have experienced the sudden death of an adult family
member to enable access to information about professional, evidence based, and
skilled services and support.
death, sudden, support, family, adult, professional
The sudden
death of a family member is a traumatic event and is usually something which
takes time for the family and individual members to adapt to emotionally and
practically. Sudden deaths may arise from natural or unnatural causes,
including trauma, self-harm or violence perpetrated by others. As well as the
unfamiliarity of sudden death itself, relatives may encounter and interact with
a range of professionals, including health and social care staff, police, and
those whose responsibility is to investigate the death (Kristensen et al,
2012). Relatives may be unfamiliar with some professional roles and the
processes and procedures that need to be carried out by, for example,
paramedics, police liaison officers, coroner, and criminal justice services
(NHS, 2018; Stephen et al, 2015).
It is known
that bereavement adversely affects the mortality of surviving individuals and
specifically creates higher risk of death for those bereaved suddenly (Boyle,
2011; Shah, 2013). Bereavement after sudden death has a varied range of
characteristics depending on the nature of the death. Survivors may exhibit
inability to process the reality of the loss, frustration at the authoritative
processes restricting the ability to view the body, the effects of witnessing
the death, and for some the distress of having no body to grieve (Kristensen et
al, 2012).
Sudden
death is ill-defined and open to a range of perceptions. Sudden death may be
defined as unanticipated and therefore unexpected, with no time for preparation
or saying goodbye, consequent shock for relatives, feelings of unreality, guilt
and needing to apportion blame. Although causes of sudden death may be diverse,
relatives’ experiences of its effects are united in these kinds of commonalities
(Worden, 2009). Further, definitions of sudden death are mostly related to the
time period from the onset of symptoms as in a death by natural causes. For
example, the World Health Organization (2016) states less than 24 hours from
onset, though for deaths by unnatural causes the occurrence of a fatal episode
would define the death as sudden.
In terms of
support for close relatives and friends post-suicide, Pitman et al (2017)
identified a quarter of those bereaved receive no informal or formal support
and linked this to failed suicide prevention strategy implementation in the UK.
This is of concern when it is known that those bereaved by suicide are more
likely to also take their own lives (Scottish Government, 2018). However, the
study was limited by non-response from young males in the population sampled,
those who are most adversely affected by suicide in the UK. Every Life Matters
(Scottish Government, 2018) reiterates the provision of support and referral
pathways for those bereaved by suicide as a priority to reduce suicide rates.
Prolonged
grief disorder (PGD) may affect 10–20% of the population of people bereaved
through natural causes (Prigerson, 2004), but when the death is sudden the risk
may be increased (Boelen & Boelen, 2017). Certain bereavement challenges
which may be common in suddenly bereaved individuals may also give rise to
prolonged grieving, for example, struggling to accept the loss and guilt
related to the death (Trevino et al, 2018). In addition, sudden death may mean
greater incidence of drug or alcohol dependency, symptoms of post-traumatic
stress disorder (PTSD) or suicidal ideation in survivors (Kristensen et al,
2012). However, violent loss may be a greater predictor of these outcomes than
suddenness (Currier et al, 2006). Where there has been a suicide there may also
be challenges to a healthy bereavement and a more protracted grieving
trajectory. Post-suicide loss, individuals with signs of complicated grief are
more likely to have had a pre-loss history of mental ill-health, suicide
ideation and symptoms PTSD. This may be down to families in which suicide has
occurred being more likely to have an ongoing burden of mental and
psychological stresses (Tal et al, 2017).
Professionals
in immediate attendance at the time of the death, or in the short term after
the loss, have a crucial role in caring for the bereaved. Compassionate,
effective response is critical to allow the bereaved to cope with the immediate
situation and the resulting grief, bereavement, and healing processes (Norton,
2017). They can also lay the foundation for the difficult journey of mourning
and healing that must follow. Indeed, evidence in Scotland of financial costs
for healthcare providers related to bereavement (Stephen et al, 2014)
strengthens the case for improving support and, in cases of sudden loss,
support at the time of the death seems appropriate and necessary.
The current
systematic review aimed to explore the experiences of adult family members with
care received from professional service providers when they face a sudden death
of an adult family member which occurred in the clinical or community setting
as well as to identify support needs, met and unmet.
The review
was carried out using Joanna Briggs Institute methods, tools and software
(Aromatiaris & Munn, 2020). A search for existing reviews in the topic area
revealed none which looked specifically at sudden death and bereavement, when
the person who died and the bereaved are all adults. In the wider context, this
review included interactions with services such as the coroner, police,
mortuary and pathology, and the criminal justice system. The focus on
identifying support in these areas provided a novel and interesting
perspective.
Database
searches were carried out in ASSIA, CINAHL, MEDLINE, PILOTS, PsychArticles, Web
of Science, Google Scholar, Mednar, Social Care Online and Social Science
Research Network. These were supplemented with searches of e-thesis databases
(eg OpenDoar, EthOS), and specialist law sites (eg Westlaw). An initial scoping
of two databases (CINAHL, MEDLINE) identified a substantial body of evidence
ranging back to the early 1990s. Therefore, studies were identified for
inclusion if they were written in English and published between 1990 to end of
2021.
Inclusion
criteria applied were: studies including adult participants aged 18 or above;
relationships to the deceased (also aged 18 or above) included spouse or
partner including civil or same sex relationship; parent; child; brother or
sister; grandparent or grandchild; niece or nephew; step-parent; half-brother
or half-sister; partner of over six months; uncle; aunt, and cousin; short-,
medium- and long-term support needs, and qualitative methodologies
(phenomenology, ethnography, grounded theory, action research, feminist
research).
Studies
eliminated were those which focused on: health, social care or any other
professionals’ perspectives in relation to relatives’ needs following sudden
death; implementation studies; studies testing effectiveness or evaluation of
bereavement interventions, and studies relating to donation of organs or
tissue.
The
following search strategy was developed and used across databases, with
adaptation where necessary to fit with the specific requirements of databases:
1.
Sudden
death or unexpected death or accidental death or traumatic death or violent
death or military death or suicide or homicide or murder
2.
Family
member* or relative* or spouse* or parent*
3.
Bereave*
or mourn* or grie*
4.
Need
5.
Experience
6.
Support
7.
Adult*
8.
Hospital*
or emergency department* or communit* or out-of-hospital
9.
Procurator
fiscal* or coroner*
10.
Forensic*
11.
Post-mortem
12.
Criminal
justice
13.
Qualitative
Methodological
quality was assessed independently by two reviewers using the JBI critical
appraisal tool for qualitative studies (Aromataris & Munn, 2017). This
allowed scrutiny of studies focusing on 10 key areas which are summarised in
Box 1 and depicted in Table 2 in the results section.
Responses
applied to each quality criteria were ‘yes’, ‘no’ or ‘unclear’. Differences of
opinion between reviewers were discussed, study content reviewed, and agreement
reached. A third party, though identified, was not required. Across the
included studies a percentage score was calculated based on the number of ‘yes’
responses to provide indication of the strength of the research reviewed. Data
extraction was also carried out through systematic application of the JBI tool
designed for the purpose.
Synthesis
of findings developed through a process of assembling findings as extracted
from papers (level 1), categorising findings based on similar meanings (level
2), and the production of a single set of findings synthesised in defined
themes (level 3). Findings were identified in the themes and content of themes
as presented by authors of papers and were extracted as short pieces of data.
These were identified through repeated reading of study results sections. Based
on similarity of content of extracted findings, categories of similar meaning
were amalgamated. Categories were agreed through consensus between both
reviewers, and this led to development and agreement of the synthesised
findings of this review presented below as four themes (Munn et al, 2014).
Credibility of findings in a JBI review is established by assessing each
individual finding depending on the congruency of the study authors’
interpretation with the supporting data included in the paper (Munn et al,
2014). When drawing findings from included papers, an accompanying judgement
was made related to the credibility of the finding. Each level 1 finding was
given a ranking of unequivocal, equivocal, or unsupported to determine the
level of credibility related to representation of participants’ voice. To
additionally gain understanding of the overall credibility and dependability of
synthesised findings at level 3, the ConQual scoring system was applied (Munn
et al, 2014). Five critical appraisal criteria in the JBI tool, related to
congruity through philosophical perspective, methodology and methods, and data
extraction and interpretation were used to assess dependability, while the
assigned status of the individual findings as unequivocal, credible (equivocal)
and unsupported (U, C, US) are used to define credibility. Synthesised findings
were then ranked as either high, moderate, low or very low in terms of
confidence in quality. Each synthesised finding was allocated a ConQual ranking
which was agreed through consensus between the two reviewers (Aveyard et al,
2021).
In total
2,008 studies were identified through searching of the databases. The titles
and abstracts were screened by both authors, and 113 were identified as
eligible. Following removal of duplicate studies, 80 were retrieved in full
text format. These were read in detail and inclusion and exclusion criteria
applied, and following this process 35 studies were critically appraised, at
which stage a further 16 were found to be poor quality and eliminated. A total
of 19 studies were found to be eligible for the review and of sufficient
quality for inclusion, and the process was recorded in a PRISMA flow chart
(Page et al, 2021) (Figure 1).
Papers
analysed originated from authors working in Canada (Gall et al, 2014;
Harrington & Sprowl, 2011), Republic of Ireland (Begley & Quayle,
2007), the UK (Chapple & Zeibland, 2010; Biddle, 2003), New Zealand
(Fielden, 2003), Australia (McKinnon & Chonody, 2014; Mowell, 2007;
Ratnarajah et al, 2014; Rodger et al, 2006; Peters et al, 2016a, Peters et al,
2016b), the USA (Sharpe et al, 2012; Sharpe, 2008; van Dongen, 1991; van
Dongen, 1990; Mayer et al, 2013); Sweden (Pettersen et al, 2015) and Tanzania
(Outwater et al, 2012). Table 1 provides additional information for each
included study. Table 2 provides results of the appraisal process. Across
studies the participant voice is well represented, and this links well to the
conclusions drawn by the authors. Less well addressed are the philosophical
perspective, the researchers’ perspective on the topic of interest, and their
relationship to participants. However, most studies are congruent through
methodology, methods, and interpretations. It should be noted there was limited
breaking down of relationships of participants to the deceased or any analysis
of experiences of needs of specific groups of family members. However,
Pettersen et al (2015) explored sibling experiences.
Meta-synthesis
of textual data generated four synthesised themes (level 3). These were derived
from 206 pieces of extracted data (findings) from across the 19 papers (level
1) that were subsequently aggregated into 12 categories (level 2). In the
ConQual analysis (Munn et al, 2014) for dependability each synthesised finding
was downgraded by one level, from high to moderate, as no studies recorded a
‘yes’ response for all five key critical appraisal criteria. Analysis of
credibility found a mix of unequivocal (clear supporting quotation) and
credible (implied within text) findings for each synthesised finding. This
demoted the strength of the synthesised themes from high to an overall quality
rating of moderate (Table 3).
Across
studies a wide range of sources of support were identified, with no one place or
professional group found to consistently offer support to suddenly bereaved
individuals. At the immediate time of the death the research identified those
first on the scene as potential sources of support for relatives. However,
engagement with families was variable and, for example, McKinnon & Conody
(2014) found in their interview study with relatives of people who had
completed suicide, first responders including paramedics could be insensitive
and lack compassion or respect.
‘They said,
“don’t hurry, nothing to do here.” I shall always remember that, at the top of
his voice. . . . I thought good God. It was really bad . . . none of them spoke
to him [husband].’ (p237)
Conversely,
in the same study families reported positive experiences of support at the
scene:
‘The police
were fantastic. They were incredible, very understanding and very supportive.
No pressure.’ (p237)
Police
family liaison officers were identified as being particularly supportive for
relatives bereaved by suicide (McKinnon & Chodony, 2014; Ratnarajah et al,
2014). However, Rodger et al (2006) who studied bereaved partners from a range
of causes, identified difficulties for relatives when inexperienced police
officers delivered bad news, a role which was believed by participants to be challenging
for professionals in terms of providing immediate support. Taking a sensitive
approach and not leaving the bereaved person alone in the aftermath of suicide
death is further appreciated by relatives, as is the professional offering to
let others in the family know (Peters et al, 2016b).
Suddenly-bereaved
people may also engage with support groups, and some find benefit from being
with others who had experienced a similar tragedy, for example, a family
member’s suicide (McKinnon & Chonody, 2014; Peters et al 2016b):
‘So you
might be talking to someone and you can actually feel as well as understand
what is happening for them. You know, I think that having a peer person like
that is essential.’ (McKinnon & Chodony, 2014: p239)
However, it
was unclear whether there was any professional facilitation of the peer support
groups participants described. Other participants in the same study sought
support from counsellors, psychologists, and local doctors to help them
identify coping strategies. The general practitioner being particularly helpful
for some bereaved relatives.
‘…our general practitioner has counselled us.
I personally found his chat much more realistic and helpful than other
counselling.’ (McKinnon & Chodony, 2014, p240)
However,
the opposite experience was also reported:
‘…she wasn’t even very …very compassionate
actually …was quite a clinical approach…’ (McKinnon & Chodony, 2014, p240).
Pettersen
et al (2015) in their study of siblings bereaved by suicide identified a range
of services providing support, including a psychologist, psychiatrist, school
nurses, counsellors, hospital managers and physicians. Additionally, van Dongen
(1990) found marital counselling was an option taken up by participants taking
part in a phenomenological study of experiences of bereavement by suicide, as
well as suicide support groups.
Relatives
bereaved by suicide often described finding support online rather than looking
for support from health or social care professionals. In Chapple &
Ziebland’s (2011) study, relatives felt that by going online and taking part in
support groups, they were helping others while being helped themselves. Some
find this kind of peer support more beneficial than formal professional
services, and though not the focus of this review, it should be acknowledged
that this kind of contemporary approach to support seems accessible and used by
many as a source of bereavement support.
Participants
in Peters et al’s (2016b) study of helpful and unhelpful interactions post
suicide bereavement were clear that those also bereaved by suicide provided the
most meaningful support. Begley and Quayle (2007) also found support in groups
of people who have had the same experience to be the most beneficial. Those
bereaved by suicide felt less vulnerable in the peer group support situation
where experiences were shared.
Suicide
bereavement groups or individual counselling for those bereaved by suicide were
identified as useful for relatives where unique emotional reactions could be
discussed (Gall et al, 2014; Peters et al 2016b). The timing of accessing this
kind of service may be an important consideration for relatives and services,
and the relative quoted below demonstrated his long-term need and the value of
a trusting relationship between the bereaved person and the counsellor.
‘I didn’t want
someone to be overwhelmed by what was going to come out of me, and I know he
(counsellor) could handle it and that was the only time I spoke to anyone (20
years after son’s suicide).’ (Gall et al, 2014, p432)
Identifying
services and making contact was often challenging for relatives and a range of
reasons was revealed in the papers reviewed. McKinnon & Chonody (2014)
found relatives bereaved by suicide could be emotionally drained and lack the
will to actively seek support.
‘You don’t
have the energy when you’re needing the help the most, you don’t have the
energy to seek it out.’ (p243)
For the
suicide bereaved, a particular barrier to accessing services post bereavement
may be related to perceptions of the deceased person’s interactions with
services when they were alive (Fielden, 2003; Pettersen et al 2015). A poor
relationship between the professionals, the deceased and the family fostered
distrust in services and a reluctance to make contact. Peters et al (2016a)
identified that relatives often felt that they were held responsible for the
suicide of their loved one. Responses from both external agencies and family
members contributed to these feelings and compounded the distress of the
bereaved and prevented them from receiving support:
‘[My wife]
worried about it, she said, oh people think – I think she thinks it could be
me; I could have pushed him.’ (p254)
The
existence of the stigma attached to suicide, highlighted in the attitudes
demonstrated, continued as a strong theme in Peters et al (2016a) and was
mirrored by Biddle (2003):
‘Nobody
prepared me for, God! The humiliation. I mean it was almost as if, well, I felt
like I was put on trial. I didn’t realise until I got there I would have to
stand in a witness box … as if you’ve done something wrong.’ (p1036)
Sources of
support are varied and there is no clear place for those suddenly bereaved to
seek support. This is challenging for relatives to negotiate, particularly when
professionals may in fact be unprepared to provide even basic information,
reassurance, and signposting.
The
importance of receiving concrete and timely information was clearly emphasised
in a range of studies, with those suddenly bereaved frequently describing their
need for answers to questions about the death itself, how it occurred and what
relatives should expect will happen in the short and long term.
‘The only thing
that remains is whether he had taken any kind of drugs to, you know, to put him
to sleep. Like an anti-anxiety, a Clonazepam or something like that but I never
did find out the answer to that…’ (Harrington & Sprowl, 2011, p74)
In
particular, relatives need information and time to be able to process thoughts
about why the death occurred. Information from a professional person can
facilitate the understanding and reassurance needed (Mayer, 2013).
‘The doctor
who did the autopsy, to be able to explain it, umm, so that I understood why
the heart failed, umm, like Kim said to understand that it was painless, it was
quick [because] there is that feeling of: Oh I should have done something. But
no, there was nothing [anyone could have done]. I mean this was 30 seconds and
over with’ (Mayer et al, 2013)
Relatives
were affected in a range of ways after their loss, including sadness, sleep
disturbances, poor concentration, anger and self-blame and health professionals
were often consulted. An example of this is evident in the work of van Dongen
(1990), who explored the experiences of family members post suicide, most of
whom saw a healthcare professional for physical concerns after the death
(p227).
There are
examples in the literature where participants’ initial response is to withdraw
from social contact:
‘There’s
also a tendency to want to isolate. I didn’t do that. I pushed myself not to do
that.’ (Gall et al, 2014)
If
information was immediately given on how to access professional support, the
bereaved did not necessarily use the information provided for a variety of
reasons such as being emotionally drained or having too many other things to
organise and carry out. Participants strongly stated that a professional,
preferably a family physician, should contact the family during the first few
days after the death. It was described by one participant in van Dongen’s
(1991) study as the ‘caring’ and ‘appropriate’ thing to do (p379). Participants
in most of the studies reviewed described their need for healthcare professionals
to take the initiative and contact them to see how they were and to offer
support. It was a source of concern that this does not appear to happen
routinely.
Experiences
of support from professionals are disparate across included studies. However,
there is evidence of both positive and negative outcomes for bereaved relatives
where there were service contacts. Getting answers to questions and reassurance
was found to be important by Mayer et al (2013) who studied relatives after the
deceased had died from a sudden cardiac event. In contrast, coroner services
are an area where the evidence reviewed suggests support for relatives is lacking.
Delays and poor communication were frustrating for relatives across some
studies in the review.
‘It’s been
months now, I keep thinking they must be keeping something awful from me. The
coroner hasn’t been contacting me at all. Even when I ring he doesn’t get back
to me.’ (Biddle, 2003)
For
relatives, being called as witnesses was also a distressing experience they
were unprepared for and felt unsupported.
‘It just
added to my experience of guilt is what it did. You know like, “Oh God! I am
this bad mother, I hadn’t seen my daughter” …I felt I was being judged as a
mother that day. I have to admit I felt more guilt after the inquest than I did
possibly even when she died.’ (Biddle, 2003, p1073)
In
contrast, a respondent in the same study described the coroner as helpful and
sympathetic towards her while she gave evidence explaining that he conveyed an
awareness of how distressing it may be for her and was anxious to minimise the
discomfort. Five respondents also gained some level of enlightenment from the
inquest, though only one obtained a sufficient explanation for why the suicide
had occurred (Biddle, 2003). Additionally, participants bereaved by suicide in
Peters et al (2016b) study recounted positive experiences of support from
coroner services in South Australia and a compassionate approach.
Harrington
& Sprowl (2011) studied family members experiences of viewing the
deceased’s body and identified caring and honest expressions of kindness
enabling participants to recall interactions as positive. However, unkind
interactions evoked a negative impact on bereavement experiences, though some
interactions seen as negative may have been meant to protect the individual:
‘If it were
my son I would not view him.’ (p79)
However, it
could be questioned whether this would be ethical or an expression of
professional power. Mowll (2009) reported that when relatives saw the body it
often allowed them to accept the reality of the death, and to say ‘goodbye’.
This was particularly beneficial when relatives had not been present at the
time.
Written
materials provided to relatives in the form of leaflets designed to help people
to understand their bereavement were generally viewed negatively and considered
outdated and irrelevant (McKinnon & Chonody 2014). In addition, peer
support groups were also not the answer for some:
‘I needed to
do more than just talk around in circles…I needed to know there were strategies
you could use, there were ways of healing.’ (McKinnon & Chonody 2014, p238)
The lack of
a professional facilitator was identified as problematic by some, while other
participants valued the comfort provided by peers, giving them hope and
understanding.
Ratnarajah
et al (2014) also identified participants finding benefits from being listened
to and developing trusting relationships with others in support groups, while
some, particularly younger bereaved people, did not feel they belonged in the
group (p53). Rodger et al (2006) further indicates long-term impact of poor
support when relatives ‘feel information about the death was held back by the
professional, and this may lead to resentment which does not fade over time’
(p123). This is mirrored in Peters et al (2016a), whose participants described
medical care as in some cases ‘hopeless’ (p254), and an example was provided of
a relative who was passed onto a colleague of the GP for bereavement support.
In the
Tanzanian context (Outwater et al, 2012), nurses were seen as the main carers
for suddenly bereaved people. However, nurses were judged on whether their
verbal and non-verbal communications were caring or not.
‘Many have
compassion….nurses can heal…if you arrive they care for you as a nurse, as if
you were their own child. But sometimes others cause despair. They have words
to embarrass people…’ (p402)
In Sharpe
(2008) the importance of culturally skilled care and understanding is evident.
For example, for many African-American families due to the nature of the death,
the fear of being further stigmatised prohibits them from seeking the support
of professionals.
‘African-Americans
do not use therapy enough; we have a whole stigma about therapy.’ (p209)
Sharpe et
al (2012) further identify that counselling or psychiatric input at group or
individual levels was helpful for some survivors but challenging for others to
‘open up’. Due to the possible lack of trust with formal support most
participants endorsed support groups. Sharp et al (2012) call for education,
information and training in bereavement care.
In relation
to suicide loss, Pettersen et al (2015) identified three main themes related to
satisfaction with support from health professionals: grief related support;
empathic encounters; and psychosocial benefits. In contrast, there were four
main factors provoking negative emotions: lengthy access; insufficient care;
non-empathic encounter; and perceived professional incompetence. Professional
interventions participants considered as helpful included suggesting ways of
coping with guilt feelings or concentration difficulties and information about
depression and possible causes of suicide.
Positive
experiences for relatives are more likely when there are supportive
relationships between relatives and professionals. A coroner described by a
relative in Harrington & Sprowl’s (2011) study, cared in a way that put the
relative at the centre with profound effect on how the service was perceived.
‘He (the
coroner) acknowledged me as a person right away – that I lost someone. I wasn’t
a job. I was a person. And that kindness, it still makes me tear up to this
day. It’s the kindness you remember.’ (Harrington & Sprowl, 2011, p73)
In some
cases, the best and most appropriate source of support is with professionals
with whom there is already a relationship. For example, the GP for the relative
interviewed in McKinnon & Chonody’s (2014) study of relatives’ experiences
post suicide: ‘our general practitioner has counselled us. I personally found
his chat much more realistic, and helpful than other counselling’ (p240).
Across
studies, the ability to initiate a conversation with a bereaved relative and
give them time, space and attention to speak and be listened to is a key theme.
In the work of van Dongen (1990) looking at the experiences of family members
(n=35) post suicide, 54% saw a healthcare professional for physical concerns
after the death. However, only 7% indicated that the suicide was discussed
during the healthcare visit (van Dongen 1990 p227). Moreover, survivors
stressed the importance of the family physician being knowledgeable about
suicide and grief and being comfortable and willing to discuss these topics
(van Dongen, 1991, p380).
A key
aspect of support is identified as the ability to develop a supportive relationship
with a counsellor or psychiatrist, and quick turnover of staff was found by
Mayer et al (2013) to challenge this process. The clinical approach to
bereavement support may be seen by relatives to be unhelpful, though this may
depend on the practitioner (Mayer et al, 2013). However, in the context of
homicide in Tanzania, the nursing role was seen as the most appropriate for
‘caring for the body and the relatives of the deceased.’ This role included
‘stabilising and strengthening the family’ (Outwater et al, 2012, p402).
This review
has demonstrated the existence of supportive care for family members
experiencing sudden bereavement as well as times when care and a sensitive
approach was lacking. Across the studies it was also evident participants were
offering solutions to improve interactions with service providers. In this
discussion areas of concern will be highlighted first, and examples of a
supportive approach discussed thereafter.
Areas of
weakness were when the professional support for suddenly bereaved relatives
after the death of an adult family member lacks organisation, is at times
inconsistent and largely unplanned (McKinnon & Chonody, 2014). Immediate
care can be insensitive and unskilled, indicating a lack of understanding on
the part of the responders about the emotional requirement for their response
to be values based, and family centred (McKinnon & Chonody, 2014; Rodger et
al, 2006). This negative impact continues longer-term post death when the
ability of family members to seek support is compounded by perceptions that
immediate contact with professional response services was insensitive and at
times unresponsive to need (McKinnon & Chonody, 2014). Norton (2017) states
that the previous experience and confidence level of the attending professional
can influence their performance and the resulting experience for the family. It
is necessary for supporting staff to develop bereavement care skills in their
roles across all settings where care after sudden death is required by family
members. By the very nature of the event, sudden death is more likely to occur
outside the hospital setting. Identifying opportunities to provide sensitive
and appropriate support in the immediate aftermath of the death should be
within the competence of all healthcare professionals. Often post-death support
for family members affected by sudden death may be provided by a range of
organisations, but it often requires the bereaved to action this (McKinnon
& Chonody, 2014).
Following
sudden death, the current study found bereaved family members have unanswered
questions and study participants expressed their desire for support services to
approach them in the time after a loss. From this review it is apparent there
is a need for those bereaved suddenly to have accurate information as far as
possible, about how and why the death occurred. For healthcare professionals to
freely offer this kind of information in a sensitive and values-based way would
be highly appreciated by relatives. Support given in this way would have only
small impact for services in terms of time and finance. Cowdry and Stirling
(2020), in their literature review on sudden death of people with epilepsy,
emphasise the importance of timely support for the family members that is available
and open-ended and easily accessible, without the family members having to
search and repeat their experiences to several people or organisations. More
recently there has been an example of a professional-led bereavement service,
when the death has been from Covid-19, which family members found supportive
and numbers of complaints to services were reduced (Grimes et al, 2020). With
bereavement being shown to have an economic cost in terms of healthcare contact
(Stephen et al, 2014), then it becomes incumbent on healthcare providers to be
developing processes for contacting relatives after a loss, including the
sudden loss of adult family members, with staff who can provide evidence based,
skilled and supportive care. It is necessary for professional staff to develop
bereavement care skills in their roles across healthcare settings, including in
statutory and non-statutory community settings. This provides a basis from
which support for suddenly bereaved individuals becomes part of a range of
roles, for example, general practitioners, district nurses, coroner,
counselling services, and a range of voluntary sector organisations not
necessarily set up to work with bereaved individuals specifically.
Peer
support using social media and more informally within the local community,
though not the focus for this review, may be a helpful and responsive source of
support for family members (Aoun et al, 2018). Internationally a lack of formal
care for the bereaved is supplemented by a range of voluntary sector organisations
providing bereavement support in the short and longer term, some being generic
for bereavement, for example Cruse Bereavement Support, with others specific to
the nature of the death or the situation of the bereaved, for example People
Experiencing Trauma and Loss (PETAL) and Widowed and Young (WAY). This reflects
a public health approach to bereavement care using community groups already
known to the bereaved relative (Bellamy et al, 2014). However, the availability
and efficacy of these organisations to support bereaved people may not be clear
in the immediate aftermath of the death, and it may only be after some time
when relatives recognise they are struggling to cope with feelings, or to adapt
practically (Schut and Stroebe, 2011).
While the
literature reviewed did not address the full scope of situations or
professional involvement with bereaved relatives in the context of sudden
death, there was some focus on coroner services. In many situations of sudden
death, contact for families with coroner services is inevitable and
interactions can affect families in a range of ways including feeling judged,
being made to feel guilty, and generally feeling unprepared for an inquest.
However, the coroner service was often able to provide information about the
death, and this was viewed as positive (Harrington & Sprowl, 2011).
Professionals and relatives in coroner settings also play out the dilemma of
whether to view the deceased’s body. Relatives who see the body often benefit,
and when the professional discourages viewing, they may be seen as misusing
their power, even though this is well meant (Mowll, 2009). Current guidance
encourages a sensitive approach from professionals when discussing whether to
see the deceased’s body (Ministry of Justice, 2020). Additionally, recent
research on mortuary practice in Hong Kong has found positive impacts on
relatives when a ‘life-affirming’ strategy was adopted in the service.
Improving the mortuary environment, providing facilities for farewell
ceremonies, and developing the skills and knowledge of staff in relation to
bereavement and support for relatives were aspects of this approach (Lau et al,
2023).
The
Ministry of Justice (2020) guidelines, publicly available in England and Wales,
show enhancement of support for the bereaved in coroner services, particularly
in relation to coroner inquests (Ministry of Justice, 2020). This outlines the
responsibilities of coroner services to support the bereaved and identifies
what family members can expect from the coroner’s office. Voluntary sector
support is also available through such organisations as The Coroners’ Courts
Support Service (www.coronerscourtssupportservice.org.uk). Overall, being open
and providing opportunities for people to be together and share their experiences
is usually positive. In a UK study Gregory (2014) supports these findings and
highlighted that while coroners identified that they were not experts in
bereavement in the main, they were aware of the fragility of bereavement for
family member survivors and considerate of communication skills, shielding and
protecting the family members as well as giving time. The study showed that
coroners developed commendable insight when responding to the needs of the
bereaved and were aware of how they could significantly impact on bereaved
families’ wellbeing and ability to continue after the inquest (Gregory, 2014).
Again, this supports the call for staff to develop bereavement care skills in
their roles across all settings where care after sudden death is required for
family members.
The
professional role in supporting relatives after a sudden death is seen as
important and is most beneficial when there is a personal relationship between
the bereaved person and the supporter. On some occasions this may be the person’s
GP, though there is also scope for developing an established role for nurses in
supporting those bereaved suddenly. In an intensive care context where sudden
death is likely, Walker and Deacon (2016) advocate a person-centred approach to
the bereaved with participating nurses expressing willingness to respond to
relatives’ needs, provide information and enable viewing of the body. However,
nurses in their study admitted to avoiding the situation and being inadequately
prepared to provide support. Across the papers reviewed it was not possible to
identify trends in relation to cultural aspects of bereavement care. However,
Sharpe (2008) and Sharpe et al (2012) focused on an African-American population
and made reference to lack of trust, stigma and prejudice. Negative attitudes
impacting on accessing health and social care services are pervasive and
persistent and impact on experiences of those suddenly bereaved. Though not a
focus of the review it is acknowledged poor cultural competence and lack of resource
may influence the availability and development of services. The work of Finch,
Wilson and Bibby (2023) identifies urgency to develop the relationship between
service providers and under-represented groups. Appropriate professional
development for healthcare staff appears to be a priority for improving support
around sudden loss in a range of settings.
Importantly,
the bereaved need the opportunity to meet with the same person and not have to
retell their story over again. An open relationship where there is space to
give attention to the bereaved, and to listen to their experiences and needs is
vital. However, Aoun et al (2017), reporting their study of bereavement care in
palliative care services, identified that professional support for every bereaved
relative was neither beneficial nor affordable, and advocate a whole community
approach. Referral pathways were recommended, though it was recognised that for
those suddenly bereaved this kind of continuity was not always possible. For
health professionals who are in contact with people who have suffered a sudden
loss of a family member or friend, taking an enquiring approach like that
recommended by the NHS initiative Making Every Contact Count (MECC) (Public
Health England, 2016) could be one way of enabling supportive conversations and
signposting to other services. This provides a structured way of encouraging
people, including health and social care professionals, to hold informal
conversations with people creating the opportunity to signpost support. Though
bereavement is not currently an aspect of MECC, it may be a small thing which
can be added to improve interactions in a way that is acknowledging the loss
and providing options for ongoing support. This kind of approach is supported
in the Bereavement Charter for Children and Adults in Scotland (Scottish Care,
2020) which sees bereavement support as a human right and emphasises the need
to develop a culture of care and support across society. This validates the
position and the ongoing development of professionals as compassionate
individuals who can create space to talk about death and bereavement and
support bereaved families. However, in the immediate aftermath of a sudden
death outside a formal care setting, when research included in this review indicates
there is need, the opportunity for interactions with health professionals may
be more limited. Other services, like the coroner, the undertaker or the first
responder, may be best positioned to support and signpost. This study suggests
inconsistent provision and quality of caring interactions, which could reflect
the assumption that because bereavement is a natural process people will adapt
and cope.
The review
was limited by not exploring grey literature on the topic, which may have
uncovered information about a wide range of situations, services and settings
in which bereavement care is provided for those suddenly bereaved. However,
looking for research related to relatives’ experiences of support was the main
aim of the study, and it is unclear whether grey literature would reveal this
level of understanding. Use of JBI methods and processes provided a
comprehensive structure for the review and enabled the detail within the papers
included to be identified and analysed considering the whole body of literature
reviewed. The process is well developed and has a key place in healthcare
research in current times. The ConQual process for grading study quality (Munn
et al, 2014) is continuously undergoing development, though it is perhaps fair
to say that in this study the process lacked the sensitivity necessary to grade
studies with sufficient clarity to enable useful conclusions to be drawn. It
did reveal one study which was of poor quality and reduced the credibility of
the review, so this on its own was useful to identify and eliminate.
This
systematic review revealed experiences of suddenly bereaved relatives of
receiving support from professionals in the immediate aftermath of a loss, as
well as in the days, weeks and months afterwards. There were examples of good
practice which was reassuring and supportive for relatives, and examples where
support was difficult to identify and access. The review indicates that people
respond well to support offered spontaneously which is empathetic and shows
willingness to engage with individuals when they have been bereaved with no
preparation for such an event. This kind of support when it is widely practiced,
offered and accessible to the bereaved is a key factor in promoting healing and
a healthier grief and bereavement experience. Developing person and family
centred skills and engaging confidently with those suddenly bereaved is the
role of individual practitioners and organisations who encounter bereavement in
its many forms. Opportunities to develop through collaborative education should
be available, and practitioners should develop professionally through embracing
experiences to interact on this level with people in their care. Overall,
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