Date Published: March 7, 2019
Publisher: Public Library of Science
Author(s): Samar M. Aoun, Lauren J. Breen, Bruce Rumbold, Kim M. Christian, Anne Same, Julian Abel, Heidi H. Ewen.
The objectives of this study were to explore the goodness of fit between the bereaved peoples’ needs and the support offered by their social networks; to ascertain whether this support was experienced as helpful or unhelpful by bereaved people; and to explore both the types of social networks that offer effective support and the characteristics of the communities that encourage and nurture such networks. This study was based on qualitative interviews from twenty bereaved people, in Western Australia, interviewed in 2013. A framework analysis of these interviews was undertaken using a deductive approach based on the goodness of fit framework. Much of this support is provided informally in community settings by a range of people already involved in the everyday lives of those recently bereaved; and that support can be helpful or unhelpful depending on its amount, timing, function and structure. Improving the fit between the bereaved person’s needs and the support offered may thus involve identifying and enhancing the caring capacity of existing networks. An important strategy for achieving this is to train community members in mapping and developing these naturally occurring networks. Some such networks will include relationships of long standing, others may be circles of care formed during a period of caring. Peer support bereavement networks develop from these existing networks and may also recruit new members who were not part of the caring circle. The findings endorse social models of bereavement care that fit within a public health approach rather than relying solely on professional care. As exemplified by Compassionate Communities policies and practices, establishing collaboration between community networks and professional services is vital for effective and sustainable bereavement care.
Bereavement can be an extremely stressful and difficult experience for an individual [1, 2]. Adverse outcomes can occur across multiple domains: emotional (e.g., sadness, anger, guilt), physical (e.g., fatigue, agitation, pain), behavioural (e.g., sleep and appetite disturbance, absentmindedness), and cognitive (e.g., disbelief, confusion, hallucinations). Alongside these consequences, the bereaved must also cope with the secondary losses that arise as a result of bereavement, including social isolation and stigma , financial loss , and changes of roles and responsibilities . Additionally, bereavement is associated with an increased risk of mortality , a higher risk of suicide and suicidal ideation  and a higher risk of developing mood, anxiety, and adjustment disorders, and complicated/prolonged grief reactions .
We undertook a framework analysis of these interviews using a deductive approach [26, 27] based on the goodness of fit framework . Interviews were digitally recorded, professionally transcribed and de-identified. One co-author conducted the initial coding of the relevant sections of the transcripts which was then verified by another co-author. Emerging themes, patterns, and sentiments were then uncovered and identified to determine the impact of the social supports on the bereaved in relation to the goodness of fit factors (source, amount, timing, structure, and function).
This qualitative study builds on previous work by our research team in exploring the bereavement experience of a community-based sample and the individual factors that are associated with bereavement [17, 24, 28, 29]. We found that not everyone who receives bereavement support needs it and not everyone who needs bereavement support receives it. It was important to know not only who best provides bereavement support, but more so who is perceived by bereaved people to have offered them the type and amount of support they needed, at the time they needed it. To our knowledge this is the first study to explore all factors of the goodness of fit framework in order to address this question.
The research literature emphasizes the many negative consequences of bereavement, with increases in physical and psychological morbidity and mortality, and the disruption of social relationships being a primary determinant of both health and mortality. This puts the impact of bereavement squarely into a public health perspective that pursues health equity. We argue here for adopting and strengthening a compassionate communities approach, not only for end of life care for dying people but also along the continuum of bereavement support. To support this approach, more research is needed into practice models that connect health and social services with local neighbourhoods and cultural life. Settings such as workplaces, schools, social and sporting clubs, and faith communities all have potential in making these connections. Fundamentally, however, the issue we have identified here in relation to bereavement is one endemic to contemporary social organisation, a steady increase in social inequality and its negative consequences for well-being . Inequality contributes to social exclusion, particularly for those of reduced means. However, social inclusion is needed not only at end of life, but at all stages of life. Ideally, the networks that support us at end of life will be those that have supported us through life, and the end of life provides both a further opportunity for existing networks to be revived and strengthened, and new networks formed. However, the nature of contemporary society is that those with economic power may retain their social networks and be able to purchase professional support, while those without economic power may lack access to both. As our previous quantitative findings  and more recent qualitative findings here indicate, bereavement support is about the circles of care  that are formed during the caring process, combined with peer support perhaps from people who were not part of the caring circle. It is imperative that these circles transcend social divisions and become available to all members of the community.