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

Bindley, Kristin; Lewis, Joanne; Travaglia, Joanne; DiGiacomo, Michelle

doi:10.1111/hsc.13339

Cited by 3 publications

(3 citation statements)

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“…It was anticipated that the insights of former carers may inform future advocacy regarding policy related to end-of-life caring and bereavement. Findings related to experiences of palliative care and welfare workers within the same region have been reported elsewhere (Bindley et al, 2020, 2021). In this article, we argue that the intersection of certain social locations and features of the welfare state shaped the exposure of carers of people with life-limiting illness to inequity and disadvantageous outcomes, while caring and in bereavement.…”

Section: Introductionsupporting

confidence: 53%

“…Practice implications arise for those working with carers within public welfare systems, as well as in end-of-life and palliative care. The potential for welfare policy and processes to contribute to ‘structural burden’ or stress related to the negotiation of complicated and fragmented systems (Funk et al, 2019) was evident, and has been associated with intersecting social locations related to age, literacy, language and pre-existing financial strain (Bindley et al, 2020, 2021). While the need for approaches to the education of health professionals focussed on the social determinants of health has been recognised (Sutherland et al, 2016), this emphasis is also necessary within the welfare sector.…”

Section: Implications and Conclusionmentioning

confidence: 99%

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

et al. 2021

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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.

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Section: Introductionsupporting

confidence: 53%

Section: Implications and Conclusionmentioning

confidence: 99%

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

et al. 2021

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“…Data analysis: Interview data were initially analysed using the framework approach, 34 with findings reported elsewhere. [35][36][37] The IBPA framework (Table 1) 23,25 is designed to reveal critical information for future policy and practice priorities, and was chosen as an analytic framework to undertake further analysis and synthesis of findings. Given the majority of social determinants of health are shaped by policies beyond the healthcare sector, 38 this approach is fitting for analysis of findings pertaining to welfare policy.…”

Section: Methodsmentioning

confidence: 99%

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

et al. 2022

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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.

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“It’s not a pain you can fix”: A qualitative exploration of working with vulnerably positioned current and bereaved carers across sectors of health and social care

Bindley,

Lewis,

DiGiacomo

2024

Death Studies

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

Abstract: An individual and psychological emphasis has influenced practice and research on bereavement following informal care provision in the context of life-limiting illness.

Cited by 3 publications

References 40 publications

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

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

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

“It’s not a pain you can fix”: A qualitative exploration of working with vulnerably positioned current and bereaved carers across sectors of health and social care

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