Social welfare needs of bereaved Australian carers: Implications of insights from palliative care and welfare workers. 2021

Kristin Bindley, and Joanne Lewis, and Joanne Travaglia, and Michelle DiGiacomo
Faculty of Health, The University of Technology Sydney, Ultimo, NSW, Australia.

An individual and psychological emphasis has influenced practice and research on bereavement following informal care provision in the context of life-limiting illness. Consideration of the potential for bereavement to be shaped by intersecting social and structural inequities is needed; and should include an understanding of interactions with government institutions and social policy. This qualitative study employed interpretive description to explore the way in which palliative care workers and welfare sector workers perceive and approach experiences and needs of bereaved carers receiving government income support or housing assistance in Western Sydney, an area associated with recognised socioeconomic disadvantage. A total of 21 palliative care workers within a public health service and welfare workers from two government social welfare services participated in in-depth interviews. Data were analysed using framework analysis. Participants highlighted social welfare policy and related interactions that may impact bereavement, potentially related to financial, housing and employment precariousness. Personal, interpersonal and structural factors perceived to shape the navigation of welfare needs were explored, alongside needed professional and structural changes envisioned by workers. With limited forms of capital, vulnerably positioned carers may encounter difficulties that heighten their precariousness in bereavement. Transactional organisational cultures alongside health and welfare agencies that function in a siloed manner appear to contribute to structural burden for carers, following death due to life-limiting illness. Palliative care and welfare workers also associated elements of their work with bereaved carers with their own experiences of helplessness, frustration and distress. Findings point to a need for the development of interagency strategies in addition to policy underpinned by more nuanced understandings of vulnerability in bereavement, post-caring.

UI MeSH Term Description Entries
D010166 Palliative Care Care alleviating symptoms without curing the underlying disease. (Stedman, 25th ed) Palliative Treatment,Palliative Supportive Care,Palliative Surgery,Palliative Therapy,Surgery, Palliative,Therapy, Palliative,Care, Palliative,Palliative Treatments,Supportive Care, Palliative,Treatment, Palliative,Treatments, Palliative
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D001315 Australia The smallest continent and an independent country, comprising six states and two territories. Its capital is Canberra. Canton and Enderbury Islands,Christmas Island,Christmas Island (Australia)
D001601 Bereavement Refers to the whole process of grieving and mourning and is associated with a deep sense of loss and sadness. Bereavements
D012944 Social Support Support systems that provide assistance and encouragement to individuals with physical or emotional disabilities in order that they may better cope. Informal social support is usually provided by friends, relatives, or peers, while formal assistance such as COMMUNITY SUPPORT is provided by churches, groups, etc. Perceived Social Support,Social Care,Online Social Support,Care, Social,Online Social Supports,Perceived Social Supports,Social Support, Online,Social Support, Perceived,Social Supports, Online,Social Supports, Perceived,Support, Online Social,Support, Perceived Social,Support, Social,Supports, Perceived Social
D012946 Social Welfare Organized institutions which provide services to ameliorate conditions of need or social pathology in the community. Community Services,Services, Community,Community Service,Service, Community,Welfare, Social
D017028 Caregivers Persons who provide care to those who need supervision or assistance in illness or disability. They may provide the care in the home, in a hospital, or in an institution. Although caregivers include trained medical, nursing, and other health personnel, the concept also refers to parents, spouses, or other family members, friends, members of the clergy, teachers, social workers, fellow patients. Family Caregivers,Informal Caregivers,Spouse Caregivers,Care Givers,Carers,Care Giver,Caregiver,Caregiver, Family,Caregiver, Informal,Caregiver, Spouse,Caregivers, Family,Caregivers, Informal,Caregivers, Spouse,Carer,Family Caregiver,Informal Caregiver,Spouse Caregiver
D036301 Qualitative Research Any type of research that employs nonnumeric information to explore individual or group characteristics, producing findings not arrived at by statistical procedures or other quantitative means. (Qualitative Inquiry: A Dictionary of Terms Thousand Oaks, CA: Sage Publications, 1997) Research, Qualitative

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