Experiences of social welfare policy in the context of caring and bereavement in Western Sydney

University of Technology Sydney. Faculty of Health.: Caring and bereavement in the context of life-limiting illness has been associated with a myriad of challenges for informal carers that may precipitate social welfare needs, including those related to income support and housing. Structural determinants such as interactions with government agencies and social welfare policy possess potential to contribute to inequity, yet their impact upon carers pre- and post-death is under-explored. : This study aimed to inform approaches that might improve the caring and bereavement experience of informal carers of people with life-limiting illnesses, who interact with welfare policy and public organisations during and following informal care provision in Western Sydney; a region associated with recognised socio-economic disadvantage. The objectives included undertaking in-depth exploration of the experiences of former carers, alongside specialist palliative care workers and welfare workers engaged in related support provision or policy administration; and the identification of approaches that may increase structural and community capacity. : Phase one involved a scoping review which highlighted limited scholarship on social and structural inequity post-caring, and informed the adopted conceptual framework. Guided by an interpretive descriptive approach, phase two involved in-depth interviews with specialist palliative care workers (n=7), welfare sector workers (n=14) and former carers of people with life-limiting illnesses (n=12). Data were analysed using framework analysis. In phase three, features of Intersectionality-Based Policy Analysis were applied to findings to illuminate issues pertaining to inequity, and policy implications. : Welfare policy and process-related burdens were identified that related to low rates of income support payments, complex requirements, increasingly virtualised support and transactional agency cultures. These structural burdens contributed to the work of system navigation for carers. Individual social locations, resources and coping approaches differentially subjected carers to this work of system navigation and varying degrees of advantage or disadvantage. Vulnerably positioned carers encountered inequities in the form of financial, housing and employment insecurity and uncertainty and heightened psychological distress, related to diminishing, difficult to access or invalidated resources. : Recognition of the potential for the creation and perpetuation of inequity for vulnerably positioned carers during end-of-life and in bereavement is essential. Strategic and coordinated upstream investment is integral to advance necessary changes to policy and processes. Alongside this, downstream attention within the clinical or practice encounter to individualised assessment and support, the development of grief and policy literacy, the application of discretion and advocacy, and consideration of the impact of structural forces, is vital

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. </jats:sec

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. </jats:p

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

I dressed her up in her best dress: The experiences of the dead body for bereaved relatives in the context of palliative care

Critical exploration of family members\u27 experience of the body of their deceased relative after a death in palliative care have been limited. To address this gap, we drew on semi-structured interviews at 6 months post loss with 58 family members bereaved after a death in palliative care, as part of a larger, longitudinal study conducted between 2016 and 2018. Narrative thematic analysis elucidated themes within and across participants\u27 accounts of their experiences of the body. Social constructionist perspectives underpin recognition of the processes of grieving family members. Within an overarching theme of social meanings of the dead, five themes pertained to individual, relational, and contextual dimensions of interactions with the body, including: a dual sense of the body still holding the person and as just a body; family\u27s experiences of the body both at home and in formal care settings; expectations around the right amount of time to be with and leave the body. Accounts also revealed their sense of knowing or not knowing what to do with the dead and elements of preparation of the body and management of the family and body by professional caregivers, with differences for deaths at home and deaths in formal settings. Findings highlight the importance of facilitating family and individual preferences, and options around care, place, and time with the body. Focus on support from clinical and social work staff, is warranted to enable provision of informed choice and support for families to engage with the body. Challenges related to COVID-19 are discussed