Bureaucracy and burden: An Intersectionality-Based Policy Analysis of social welfare policy with consequences for carers of people with life-limiting illness.

BACKGROUND: For informal carers of people with life-limiting illness, social welfare policy related to income support and housing has been associated with varied psychosocial issues, yet remains relatively under-explored. An intersectional approach offers potential to illuminate diverse experiences and implications. AIM: To explore the way in which caring in the context of life-limiting illness is framed within welfare policy, to articulate inequities encountered by carers, and to identify policy and practice recommendations. DESIGN: The Intersectionality-Based Policy Analysis (IBPA) Framework was used to situate findings of a broader qualitative study. SETTING/PARTICIPANTS: Data were collected via semi-structured interviews with participants who were bereaved carers (n = 12), welfare workers (n = 14) and palliative care workers (n = 7), between November 2018 and April 2020, in an Australian region associated with socioeconomic disadvantage. Five elements of IBPA were applied to the products of analysis of this data. RESULTS: Use of the IBPA Framework revealed that representations of carers and causes of their welfare needs in policy were underpinned by several assumptions; including that caring and grieving periods are temporary or brief, and that carers have adequate capacity to navigate complex systems. Policy and processes had differentiated consequences for carers, with those occupying certain social locations prone to accumulating disadvantage. CONCLUSIONS: This intersectional analysis establishes critical exploration of the framing and consequences of welfare policy for carers of people with life-limiting illness, presented in a novel conceptual model. Implications relate to intersectoral development of structural competency, responsiveness to structurally vulnerable carers in clinical practice, and needed policy changes.

Caring and Grieving in the Context of Social and Structural Inequity: Experiences of Australian Carers With Social Welfare Needs.

Caring for and bereavement following the death of someone with a life-limiting illness may precipitate social welfare needs related to income support and housing. Nevertheless, carer experiences of welfare policy and institutions have not received significant attention. This qualitative study explored experiences of carers who navigated social welfare policy while caring for someone with a life-limiting illness, and in bereavement. In-depth interviews were conducted with 12 bereaved carers in an area associated with socioeconomic disadvantage. Carers differentially encountered precariousness, with some experiencing structural vulnerability. These positionalities appeared to be shaped by policy and process-related burdens, perceptions of the welfare state, and degrees of legitimisation or disenfranchisement of forms of capital and coping orientations. Recommendations that may improve carer experience were identified. Implications relate to the need for an expanded conceptualisation of vulnerability in health and welfare practice, policy that authentically validates caring and grieving, and upstream strategies that address inequity.

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

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.

Caring precariously: An interpretive description of palliative care and welfare worker perspectives on end of life carers navigating social welfare.

BACKGROUND: Caring at end-of-life is associated with financial burden, economic disadvantage, and psychosocial sequelae. Health and social welfare systems play a significant role in coordinating practical resources and support in this context. However, little is known about social policy and interactions with public institutions that shape experiences of informal carers with social welfare needs at end-of-life. AIM: To explore ways in which palliative care and welfare sector workers perceive and approach experiences and needs of the carers of people with life-limiting illnesses who receive government income support or housing assistance, in an area of recognised socioeconomic disadvantage. DESIGN: An interpretive descriptive study employed in-depth, qualitative interviews to explore participants' reflections on working with carers of someone with a life-limiting illness. Data were analysed using the framework approach. SETTING/PARTICIPANTS: Twenty-one workers employed within three public services in Western Sydney were recruited. RESULTS: Workers articulated understandings of welfare policy and its consequences for carers at end-of-life, including precariousness in relation to financial and housing circumstances. Identified resources and barriers to the navigation of social welfare needs by carers were categorised as personal, interpersonal and structural. CONCLUSIONS: Caring at end-of-life while navigating welfare needs was seen to be associated with precariousness by participants, particularly for carers positioned in vulnerable social locations. Findings highlighted experiences of burdensome system navigation, inconsistent processes and inequity. Further exploration of structural determinants of experience is needed, including aspects of palliative care and welfare practice and investment in inter-agency infrastructure for supporting carers at end-of-life.

Disadvantaged and disenfranchised in bereavement: A scoping review of social and structural inequity following expected death.

An emphasis on individual intervention and psychological complexity has characterised research on bereavement following an experience of life-limiting illness. Exploration of "structural vulnerability" as a positionality produced by social and structural inequity could provide insights into areas of practice and policy in need of development. This scoping review sought to summarise published research on experiences of social and structural inequities in the context of bereavement due to life-limiting illness. Underpinned by recognised methodological frameworks, systematic searches were conducted of four electronic databases. Eligible studies attended to bereavement experience following the death of an adult due to life-limiting illness, included consideration of social and structural inequities, and were undertaken in high income countries between 1990 and 2018. Following thematic analysis, a conceptual framework was developed. Of 322 records, 62 full text articles were retrieved and 15 papers met inclusion criteria. Studies highlighted unequal social status in bereavement related to gender, class, sexuality, ethnicity and age, with structural inequity experienced in interactions with institutions and social networks. Studies also identified that the experience of bereavement itself may be accompanied by exposure to disenfranchising systems and processes. Structural vulnerability appeared to be associated with outcomes including psychological distress, social disenfranchisement and practical concerns such as financial strain, housing insecurity and employment issues. Social and structural inequities potentially contribute to layered and patterned experiences of disadvantage and disenfranchisement following expected death, with implications for individual agency. Findings point to the need for consideration of socio-ecological approaches within and beyond specialist palliative care, involving development of more responsive social policy, coordinated advocacy, and systemic capacity building regarding experiences of grief, to better support populations positioned as structurally vulnerable in bereavement.

Navigating the Liminal Space: Trauma, Transition, and Connection in Bereaved Carers' Experiences of Specialist Palliative Care in Western Sydney.

Caregiving at the end-of-life has been associated with a range of physical, spiritual, social, and psychological outcomes, and influenced by encounters with providers of specialist palliative care. The purpose of this qualitative study was to explore experiences of bereaved carers of people with a life-limiting illness, in the context of care provided through a Western Sydney supportive and palliative care service. Thirteen bereaved caregivers participated in semi-structured, in-depth interviews. Transcripts were analyzed using a thematic approach, informed by thematic networks. Four domains appeared to mediate carer experiences: confrontations with trauma, suffering, and death; navigating transitions and boundaries and the caregiving role as liminal space; encountering connection in formal care contexts; and negotiating system issues. This study is one of the first to explore caregiver experiences within a low socioeconomic population in Western Sydney and provides a nuanced understanding of factors which may shape experiences of palliative care. Findings suggest that ongoing attention to the cultivation of skilful practitioners is warranted; able to companion caregivers in a manner attuned to the potential for trauma in the context of expected death. Additionally, findings call for investment in specialist sites of care alongside greater attention to public health approaches to palliative care.