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Mapping practice in bereavement care against research

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Abstract
Stephen, A.I., Wimpenny, P.
(2008) Mapping practice in bereavement care against research. This is an extended version of the article published in Nursing Times; 104: 17, 32-33.
BACKGROUND: Bereaved people require varying levels of support, including the promotion of self-care strategies. Knowing what services to provide may be crucial for the journey to adaptation.
AIM: To map levels of agreement between practitioners’ perspectives and key messages from a previous literature review (Wimpenny et al, 2007).
METHOD: Telephone interviews were carried out with 59 service providers.
RESULTS AND DISCUSSION: The top three priorities for developing bereavement care were: education for health and social care professionals; taking a compassionate approach; and recognising grief as a normal process. Examples of established services exist, but opportunities to promote self-care in recently bereaved people are often missed.
CONCLUSION: A coordinated approach to provision of information, advice and support led by appropriately educated practitioners is recommended.

Authors
Audrey I. Stephen, MSc, BSc, RGN
, is CSO research training fellow; Peter Wimpenny, PhD, Cert Ed, BSc, RGN, is associate director, Joanna Briggs Collaborating Centre; both at The Robert Gordon University, Aberdeen.

Background and literature review

The latter decades of the 20th century saw death, dying and bereavement become topics hidden from everyday life, even though everyone experiences these issues (Johnson, 2004). Now we should encourage discussion about how they can be absorbed into life in a way that makes them more acceptable (Arnason and Hafsteinsson, 2003). Greater awareness of these life events as unexceptional phenomena could enhance health and well-being, and also allow people and communities to be more aware and supportive of bereaved people. However, it appears that dealing with death, dying and bereavement, particularly in health and social care, is increasingly challenging. Practitioners tend to rely on people being able to adapt and care for themselves.

Changing perspectives on bereavement have resulted in recognition that loss through death is not something people recover from but something they adapt to and build into their lives (Stroebe and Schut, 1999). Research has also demonstrated that bereavement has an impact on health and well-being (Parkes, 2001). Engagement and interest in bereavement and its care should be the responsibility of all health and social care professionals, as greater understanding and development of services could have significant benefits for all. How to achieve this and which aspects to develop are not clear, as there is a plethora of perspectives and services. In addition, there is a need to assess when provision should be balanced with promoting self-care.

The moment of death and subsequent bereavement is one which produces a wide variety of emotional reactions: sadness; anger; separation distress; denial; loss of interest in self and social functioning; and constant replaying of events (Parkes, 1996). However, evidence clearly shows the presence of such strong feelings does not equate to poor outcomes for most people (Stroebe et al, 2005). Hence it is necessary to consider each person’s self-care abilities.

Definitions are hard to find for bereavement care although Schut et al (2001) said it might be about ‘benefiting the bereaved individual, to help him or her to deal with the emotional and practical problems following the loss of a loved one’. All nurses are likely to deal with this issue at some time, in practice as well as in their own lives. However, if grief is a normal process from which most people will emerge, the need for intervention has been questioned (Raphael et al, 2001). In addition, evidence of effectiveness of interventions is relatively weak (Jordan and Neimeyer, 2003). Even if we believe intervention is necessary, for example counselling, the effects may not be significant.

This research sought to establish the perspectives of health and social care practitioners in statutory and voluntary sectors, through a consultation and mapping process. This drew on a previous systematic literature review of bereavement (Wimpenny et al, 2007). This review’s outcomes were shared with participants, who considered what they might mean for bereavement care practice. Here, we examine the extent to which the review and practitioners’ perspectives might contribute to the debate about the level and type of service provision required.

Aim

The study aimed to map the level of agreement between service providers and the key messages from the literature review previously undertaken (Wimpenny et al, 2007). Ethical approval was received from the School of Nursing and Midwifery ethics review panel at The Robert Gordon University. The local NHS research ethics committee indicated that no formal application would be necessary.

Method

A telephone interview study was designed to gather service providers’ perspectives on bereavement and its care.

Recruitment was carried out using three methods:

  • Invitations to established contacts;

  • Invitations to additional contacts, through purposive sampling;

  • Invitations to snowball contacts (those interviewed were asked to nominate others).

Data collection
Telephone interviews took place with participants across Scotland and selected interviewees in other parts of the UK. Interviews were carried out by four members of the research team and each lasted about 40 minutes. The key messages from the literature review were shared with participants before the interview. During the interview respondents were asked to identify those aspects they saw as priorities in practice and rank the most important in terms of their work and that of their organisation. Participants were also asked to consider the national context and identify the biggest gaps between key messages and actual practice and, conversely, where the closest matches exist.
Results

The 59 participants came from a variety of fields, with palliative care and cancer services being the largest group (28.8%). This also reflected the findings of the literature review, in that services for bereavement care in this area are often well developed. Other fields of interest included spiritual care, counselling, education, academic work, mental health and perinatal/neonatal care.

Participants had a variety of roles within their fields of interest. Seventeen were employed in palliative care and hospice services and, within that, there were seven roles represented. Most were employed as bereavement services coordinators, support workers or social workers.

Mapping to the literature review
Table 1 details the 13 key messages of the literature review and the overall ranking of the frequency for the number of times each item was identified as important. Respondents were asked to rank their top three messages in order of priority, though many gave a longer list and some said all were priorities and could not rank them in any order.

Table 1. Prioritisation of key messages from the review

 FrequencyRank
1. Education for health and social care professionals is identified as in need of development.301
2. A compassionate approach to all procedures and processes surrounding death can impact positively on bereavement. The involvement of relatives and families is essential.292
3. Grief is a normal process.283
4. Interventions should be tailored to need. Specific groups of bereaved people may require different forms of intervention.224=
5. Cultural and spiritual factors, including issues of stigma, need to be incorporated into all areas of bereavement care.224=
6. Risk factors for abnormal responses are amenable to assessment.215
7. Follow-up has been identified as important, particularly by bereaved people.206
8. There are a range of information needs that need to be addressed at local and national levels.187
9. Standards, policies and guidelines for bereavement care should be considered in all settings.178
10. A coordinated approach to bereavement care that encompasses statutory and voluntary agencies is required.149=
11. Research on bereavement and its care is particularly difficult but essential in developing services.149=
12. There are hidden socioeconomic factors, particularly for some groups of people, which need to be considered.
1110=
13. Establishing a centre for bereavement care may provide a focal point for developing research, education and practice in Scotland.1110=

Gaps between key messages and actual practice
When asked about the biggest gaps between the review’s key messages and practice, the following were identified:

  • Service provision for bereaved people is poor;

  • Grief should not be medicalised;

  • Bereavement can have health consequences;

  • There is a need to raise awareness and be much more open about grief as a normal process;

  • Staff education on bereavement requires development;

  • Research is needed on many bereavement-related issues;

  • There is a need to develop national policies and guidelines;

  • There is no national coordinated approach to bereavement;

  • Nobody takes bereavement seriously;

  • Follow-up of bereaved relatives is often not available;

  • There is insufficient awareness of multicultural issues;

  • Assessment of risk factors for complicated grief is lacking;

  • There is no uniformity in bereavement care;

  • There is a need for continuity of information, education and support.

Matches between key messages and practice
When asked where the closest matches were, the following were identified:

  • Practitioners take a compassionate approach to caring for bereaved people;

  • They work hard to communicate with bereaved families;

  • There is recognition that grief is a normal process;

  • A range of information is available;

  • Extended support is available in specialist facilities;

  • Interventions are tailored to need;

  • Provision of education for professionals is improving;

  • There is increased awareness of other cultures’ needs.

These give some assurance that there is continued development in service provision for bereaved relatives and that those aiming to commission new services should not have to start from scratch.

Discussion

There is considerable engagement with bereavement and its care within the statutory, voluntary and independent sectors. This was clearly demonstrated by the recruitment process used and the range of practitioners and others who agreed to participate.

The gaps and matches identified by participants are discussed here in terms of their relevance to promotion of self-care for bereaved people. There is some crossover between items identified as gaps and items thought to be matches with practice. Some items also correspond with or cut across others in the same list. Interestingly, a database search of health and social care literature found no references relevant to self-care and bereavement. Perhaps this is because it is expected that the vast majority of bereaved people will self-care and adapt to their situation with no intervention (Centre for the Advancement of Health, 2003).

Education and training for service providers
The development of education and training in bereavement and its care was the most frequently identified priority. However, this currently appears to have no overall framework or guidance. Several factors have contributed to the need for professionals to increase knowledge and skills, including: the perceived burden of bereavement on services; the development of care standards including bereavement care (Macmillan Cancer Relief, 2001); evidence emerging from research in bereavement; and a desire to provide the best service possible.

Practitioners believe that training should be provided for all levels of health and social care staff involved with bereaved people. The extent to which bereavement care is currently included in undergraduate courses for nursing, medical and social work students is relatively unknown (Centre for the Advancement of Health, 2003), but is probably limited. It is necessary to highlight grief and its consequences in specifically developed modules aimed at different levels of service. Within existing programmes, course participants often develop understanding of others through exploration of their own experiences and emotions regarding bereavement (Wass, 2004). By developing this kind of understanding there is greater potential that those who can self-care are given the appropriate information and support, while those at greater risk of complicated grief reactions are identified early and appropriate interventions started.

A compassionate approach
Taking a compassionate approach was ranked second in the mapping process, highlighting that interactions around the time of death are extremely important and can impact on the ongoing experience of grief for bereaved people (Billings and Kolton, 1999). It could be argued that being compassionate should be a significant factor in nursing and core to any care given. This challenges practitioners to reflect on practice and consider how they could be more compassionate in dealing with bereaved relatives. Focusing on one aspect of emotional support could be unhelpful. However, incorporating some or all of the following may be considered: feeling confident about what is said; spending time with bereaved people; providing appropriate and timely information; listening; touching; allowing time; giving permission to grieve; knowing when to intervene; being available to answer questions.

Grief should not be medicalised
The tendency to medicalise grief could bring an increasing burden for health and social care staff, leading them to believe they have to intervene. This may be caused by a lack of other support mechanisms that would have previously been available, in families and from other sources such as the church. More people now see health services as their only option, pushing bereavement nearer to medical categorisation. However, healthcare provision may not always be appropriate; other self-help approaches, such as befriending or support from others previously bereaved, may be more likely to enhance adaptation.

Furthermore, encouraging discussion about death and bereavement should be considered at a societal level (Arnason and Hafsteinsson, 2003). Greater awareness could enhance health and well-being by allowing communities to be more supportive of those affected.

However, a minority of bereaved people do require intervention and these should not be ignored. Although imprecise, it has been estimated that between 5-33% will develop pathological grief reactions (Schut and Stroebe, 2005). Good evidence shows certain identifiable factors lead to complicated grief and that these factors can be assessed (Prigerson et al, 1995). Complicated grief may be accompanied by other problems such as anxiety and depression that require treatment and additional care.

Interventions tailored to need and assessment of risk factors
Age, type of death, previous bereavement experiences, social support, personal characteristics and relationship with the deceased person are key criteria that might be useful in identifying those who may require additional follow-up and support (Parkes, 1996). Nurses in all settings might consider how they communicate about bereaved people, so those identified at higher risk can be followed up by community-based, voluntary or statutory agencies. However, if services do not collaborate it may just be left to bereaved people to cope until such time as their grief presents itself in other ways (Woof and Carter, 1997). In general, the level of provision should depend very much on the individual, with many requiring only some validation of their response and fewer needing specialist mental health and psychological services for complicated grief reactions and depression (Raphael et al, 2001). Therefore a broad level of services is needed for most bereaved people, and more specialised services for those who are unable to steer their own journey through grief.

Follow-up for bereaved people
Follow-up may enhance self-care by providing support and information. The Gold Standards Framework Project (Macmillan Cancer Relief, 2001) and the Clinical Standards Board for Scotland (2002) have provided a base from which many palliative care services have built care pathways for dying patients, their carers and families. Other areas of care, such as perinatal services (Nikcevic, 2003), have also identified a need for follow-up after a death. Many bereaved people want to ask factual questions and not necessarily seek emotional support. Such a follow-up service allows people a way back into the system where there is need.

Information needs
A wide range of information of varied content and relevance is available locally and nationally for bereaved people and care providers. This study indicates a lack of coordination of provision resulting in overlap of content, information being out-of-date or poor quality. People have a right to be able to access relevant, evidence-based information that conveys appropriate practical and emotional advice. Strategies for information-sharing developed jointly have been recommended (Scottish Executive, 2002) between, for example, local authorities, relatives, bereavement care providers and the voluntary sector.

Multicultural issues
Within the UK’s ethnically and culturally diverse society there are many different interpretations of what may be normal or abnormal surrounding death and bereavement. There is now more need than ever for the wider community to have some awareness of each others’ differences and similarities, and to be encouraged to be open and supportive when necessary (Parkes et al, 1997). Knowledge of the variety of needs before, at the time of death and beyond contributes to the development of culturally competent services (Chaplin, 2003). However, practitioners must not assume that all people within one ethnic or cultural group will have the same needs.

Socioeconomic factors
Little has been done to determine bereavement care needs in deprived communities (Richardson and Pearson, 1995) or to assess the economic impact of bereavement. Implications are thought to be extensive but remain difficult to ascertain and require research (Centre for the Advancement of Health, 2003). It may be that the impact on those in deprived communities is great, resulting in further disadvantage. The ability to care for oneself may be compromised by financial factors, particularly in western society.

Policies and standards
When people have been identified or encouraged to recognise the point at which they have a need, services need to be available for them. Local guidelines based on a national framework would encourage organisations and practitioners to provide support tailored to need or to guide people to the most appropriate service (NICE, 2004). Those engaged in bereavement care have demonstrated a real desire to do their best for those affected and to promote discussion about bereavement and its consequences.

Research
The adoption of evidence-based practice is vital to developing health and social care services responsive to the population’s needs. Since bereavement is universal, this highlights the need to develop multidisciplinary research that provides scientific understanding and practical application (Stroebe et al, 2001). Lack of evidence in the literature for self-care reveals a need to consider the development of studies that test the effectiveness of such strategies.

Coordinated approach
Changing social support networks in society have contributed to the need for health and social care staff to be able to distinguish between ‘normal’ grief responses and bereavement-related disorders, and to support and refer people who have difficult grieving experiences (Wiles et al, 2002). In addition, the level of support offered by the voluntary sector is considerable (estimated at 80% of all bereavement care) (Manchester Area Bereavement Forum, 2001). This is crucial to ongoing policy and practice development. Bereavement can also have wide-reaching consequences for society and may be related to poor mental and physical health (Parkes, 2001), and antisocial behaviour and teenage pregnancy (Ribbens-McCarthy and Jessop, 2005). It may be necessary to consider it as a public health issue. Therefore, any future developments in service provision and practitioner education should engage with all provider groups to ensure appropriate coordination can be achieved and expertise made available.

Coordination of bereavement care is currently limited and patchy. Although low in the rankings, a central body or ‘centre for bereavement care’ could coordinate education, research and practice, including provision of information and signposting people to appropriate resources. This could act as a focal point for others to engage with, and ideally would have some funding from both the NHS and social services. The Australian Centre for Grief and Bereavement is an example to be drawn on, with its mission to ‘build the capacity of individuals, organisations and communities in order to enhance well-being following adverse life events’ (Australian Centre for Grief and Bereavement, 2008).

Implications for practice

Practitioners interviewed described service provision in terms of grief being a normal process, allowing people to recognise their needs and seek help accordingly. However, the enhancement of self-care for those affected is often neglected as there is limited understanding of the bereavement process and a desire to avoid medicalisation. Therefore it is important to ensure that those who can self-care are given the appropriate information, advice and support, and that those who need additional professional help have access to services.

This may require more national and local coordination or the issue’s inclusion on the public health agenda, to ensure that gaps can be identified and provision of both statutory and voluntary services can be synchronised. To address these potentially complicated issues there may be a role for a ‘centre for bereavement care’, either as a physical unit or as an internet-based community of people who can develop and influence policy and practice. Reflecting the model of the Australian Centre for Grief and Bereavement (www.grief.org.au), there could be roles in:

  • The development of a range of interventions informed by evidence;

  • The provision of education for people, organisations and communities to effectively support bereaved relatives;

  • Building the capacity of health and social care services to support self-care;

  • Policy development;

  • Raising community awareness;

  • Supporting access to services;

  • Undertaking research;

  • Building links with other national and international groups.

Conclusion

In summary, practitioners and those involved in bereavement care have identified a range of areas for action that could, at least in part, be addressed through the promotion of self-care strategies.

Starting to develop and test such strategies and include them in local and national policy for bereavement care – within a coordinated structure of service development – would be a useful way to proceed.

Acknowledgements

The project was funded by NHS Quality Improvement Scotland, the Scottish Executive Health Department and NHS Education for Scotland.

Other members of the research team were: Rachel Unwin; Fiona Work; Colin Macduff; Paul Dempster; Sylvia E. Wilcock; Alison M. Brown; all at School of Nursing and Midwifery, The Robert Gordon University, Aberdeen.

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