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

Abstract

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.

Keywords

Palliative care carers family caregivers social welfare socioeconomic factors qualitative research

What is already known about the topic?

Significant financial burden and economic disadvantage are associated with caring at end-of-life.

Government income support benefits may be difficult to access and associated with financial hardship.

Social policy and liberal welfare states possess potential to contribute to social and health inequalities, yet are underexplored in the context of caring at end-of-life.

What this paper adds

Participants highlighted experiences of heightened precariousness and structural burden associated with welfare system navigation at end-of-life.

Vulnerable social locations, alongside features and consequences of social welfare policy and administration, were associated with carer precariousness.

Implications for practice, theory or policy

Further practice and research attention regarding structural determinants of experience for vulnerably positioned carers at end-of-life is warranted.

Structural approaches that facilitate connection between palliative care and welfare sectors, and greater differentiation of welfare policy and processes for end of life carers are needed.

Background

Informal caring at end-of-life is associated with challenging psychological, physical and social implications.^1,2,3 The associated cascading ‘host’ of issues often leads to involvement with services beyond specialist palliative care,^4,5 especially where there are complex socio-economic concerns. Social welfare needs related to income support and housing, alongside related interactions with government agencies in countries with public welfare systems, have the potential to shape carer experience at end-of-life.

The economic impact of caring at end-of-life is known to be significant, with ‘financial pain’ related to economic changes and hardships associated with dying and bereavement.⁶ A systematic review established that financial costs of caring at end-of-life are substantial and can contribute to multidimensional carer burden.⁷ Consequences are heightened for low socioeconomic groups, with income and net worth expended in end of life caring proportionally higher in low-income groups,⁸ and potential to exacerbate health inequalities.⁹ Yet, the interactions between end of life carers and social welfare systems have received limited attention. A UK-based investigation of the use of health and social services in the year before death reported a low uptake of income support benefits.¹⁰ Further, findings from a study of financial costs incurred by family caregivers within palliative care in New Zealand suggested entitlements needed to be easier to understand and utilise.¹¹ A comparison of sources of financial support for family carers at end-of-life across six countries established that government financial support was characterised by complex application processes and eligibility criteria and barriers to receiving benefits.¹² Within an Australian study, all participants receiving government assistance reported economic hardship, and government welfare programs were found to lack flexibility to accommodate the changing and complex needs of dying patients and their carers.¹³ Housing insecurity and policies have also been identified as contributing to distress for Canadian carers at end-of-life.⁵

Social policy possesses the potential to increase inequality,¹⁴ with liberal welfare states (such as Australia, Canada, New Zealand, UK and USA) understood to contribute to social and health inequalities.¹⁵ The provision of modest, means-tested benefits are a central feature of these welfare states.¹⁵ Welfare systems constitute structural determinants of carer experience that may perpetuate disadvantage, or ‘institutional inequity’.¹⁶ Patients and carers positioned as ‘structurally vulnerable’, due to intersecting social and structural forces that constrain decision-making, frame choices, and limit life options,^16,17 may be exposed to experiences of layered disadvantages at end-of-life,^18,19 and in bereavement.²⁰ Further exploration of structural conditions such as welfare policy and public organisations is warranted,¹⁵ specifically in relation to vulnerably positioned carers.

Aim

This study sought to explore ways in which specialist palliative care and welfare sector workers understand and approach experiences of informal carers of people with life-limiting illnesses, receiving government income support or housing assistance in Western Sydney. This region includes areas of relatively high socioeconomic disadvantage²¹ with lower household incomes, higher unemployment rates than metropolitan averages, and intergenerational poverty.²² The engagement of workers was anticipated to offer novel insights on systemic issues with potential to inform practice and policy. Subsequent to the current study, bereaved carers from the same community were interviewed. Those findings will be reported at a later date.

Methods

A social constructionist perspective shaped the research design and analysis, viewing meaning as subjective; created through interaction rather than discovered.^23,24 This methodological approach underpinned the use of interpretive description,^25,26,27 which values exploration of contextualised meanings ‘that may yield application implications’²³ within specific fields.²⁴ Stakeholders within public palliative care and welfare services in Western Sydney were identified and consulted by one researcher with 12 years clinical experience in this region (KB). Ethics approval was obtained from Western Sydney Local Health District (2018/ETH00269), and The University of Technology Sydney (ETH18-3072). Stakeholders were invited to share study information with potential participants identified within the palliative care service, and local offices of two government welfare organisations responsible for administering income support and public housing. This purposive approach was adopted to target workers who met inclusion criteria (i.e. occupying roles involving policy administration and/or support of carers of people with life-limiting illnesses). Upon expressions of interest, one researcher (KB) confirmed eligibility and scheduled interviews in private rooms within respective organisations. Recruitment and interviewing was undertaken over 5 months from November 2018.

In-depth interviews were guided by a framework with open-ended question prompts; to facilitate co-creation of meaning within the practice context.^24,28 One researcher with a background in social work conducted interviews (KB), supervised by three researchers with backgrounds in nursing, social work and psychology (JL, JT and MD). This collective experience supported capacity to anticipate and manage challenging issues that may arise during interviewing. Written informed consent was obtained from all participants, with consent explained as an ‘open’ process.²⁹ Interviews were audio-recorded and transcribed verbatim excepting one interview where detailed notes were taken, as the participant expressed discomfort with audio-recording. Transcripts were entered into NVIVO 12 for analysis.

The framework approach^30,31 provided ‘analytic guidance’²⁴ in concurrent analysis and data collection. Analysis was undertaken in iterative stages,²⁷ to develop a coherent conceptual description of thematic patterns.^23,28,32 One researcher (KB) led analysis, engaged in ongoing discussion with the other researchers to enhance analytic rigour. A preliminary thematic index was developed²⁷ through in-depth review of five randomly selected transcripts. All transcripts were then reviewed against this index, which was refined as analysis progressed. Subject matrices on identified themes were created and synthesised in a summary framework. Participants were invited to provide commentary on this framework before further refinement in an attempt to return purposefully to sources^24,33; and reflect meaning creation as a ‘collective endeavour’.³⁴ Through discussion between researchers, it was determined that a level of saturation of themes was reached given themes began to be repeated as analysis progressed.³⁵ It was anticipated that further recruitment would not necessarily yield significantly richer understandings.³⁶

Results

Palliative care workers (n = 7) from three health service sites and welfare workers (n = 14) from two welfare organisations were interviewed. One interview was undertaken via telephone. Interviews lasted between 34 and 75 min (mean, 55.81). Participant characteristics are summarised in Table 1.

Table 1.

Participant characteristics (n = 21).

Characteristic	Specialist palliative care workers (n = 7)		Welfare workers (n = 14)
Mean age and range (years)		53.14 (39–75)		48.84 (33–61) Unknown 1
Gender	Female	7	Female	14
Gender	Male	0	Male	0
Current role	Allied health	4	Specialist client/customer service officer	5
	Nursing	3	Client/customer service officer	4
			Social worker	3
			Senior client/customer service officer	2
Country of birth	Australia	6	Australia	8
	England	1	Egypt	1
			India	1
			Iran	1
			Philippines	1
			Sri Lanka	1
			Vietnam	1
Spoken languages other than English	No	4	No	7
	Greek	2	Arabic	1
	Croatian	1	Cantonese	1
	French	1	Maltese	1
			Serbian	1
			Tagalog	1
			Tamil	1
			Unknown	1
Highest education level	University degree	4	High school	2
	University degree	4	TAFE Cert/Diploma/College	6
	Higher degree	3	University degree	5
	Higher degree	3	Higher degree	1
Mean length of time in field & range (years)		18.71 (4–41)		21.28 (4–41)
Mean length of time in current role & range (years)		8.07 (2–17)		10.85 (1–26)

Features and perceived consequences of relevant welfare policy

Participants identified welfare policy relevant to carers of people with life-limiting illness, administered by two organisations (Table 2). Carers Payment and Allowance were the primary income support benefits discussed. Commentary from several welfare workers related to the inability to necessarily back-pay these payments to the point at which carers initiate their claim. This change was reportedly implemented 2 years prior to interviewing, and was described as potentially contributing to financial disadvantage. Regarding housing, understandings of policy governing the transfer of public housing tenancies were varied. Welfare workers confirmed that applications to transfer a tenancy to a carer or family member from a dying tenant with life-limiting illness could not be made prior to the tenant’s death, contrary to the apparently incorrect understanding of several health workers who indicated they still encourage carers to seek to be ‘added’ to tenancies pre-death.

Table 2.

Features of social welfare policy identified as relevant to end of life careers.

Income support related policy (Department of Human Services)
Carer payment	● Payment for people who give constant care to someone who will have needs (related to severe disability, illness, or frailty/aging) for at least 6 months or the rest of their life● Eligibility is dependent on caree’s level of need (according to evidence such as medical reports)● Income and asset tests apply● Reviewed if caree not deceased within 2 years
Carer allowance	● Supplemental payment for people who give additional daily care to someone who will have needs (related to disability, serious illness or is frailty/aging) for at least 12 months or the rest of their life● Eligibility is dependent on caree’s level of need (according to evidence such as medical reports)● Income test applies (not asset test)
Expedition of payment claims	● Urgent processing of income support payment claims, within 48 h● Where evidence of financial hardship and significant needs
Backdating/back-payment provisions	● Not applicable for Carer Payment (ceased around January 2017 according to welfare workers)● All supporting documentation must be provided for claims to be considered submitted or complete● Appeal avenues not available
Housing related policy (Housing New South Wales)
Recognition and acknowledgement as a tenant (RAAT)	● When a public housing tenancy is transferred to another eligible member of the household (e.g. after the death of a tenant)● Application cannot be made prior to death of a tenant with life-limiting illness (must be made within 6 weeks of death, or 10 weeks for Aboriginal applicants)● May involve 6 month provisional lease with subsidised rent while full eligibility for RAAT is assessed● Subject to income limits and eligibility conditions for example, where 2 years cohabitation, spouse/partner of tenant, 55 years + (45 years + for Aboriginal applicants)
Relocation	● A request to relocate to another public housing property may be made due to the changing needs of patient and/or carer (e.g. mobility requirements).

Perceived consequences of welfare policy were explored (Table 3). Participant observations were of ‘precariousness’, or a sense of insecurity and instability for carers at end-of-life that stems from ‘vanishing’ (lacking or difficult to access) resources, from multiple angles.³⁷ Workers associated financial precariousness with aspects of policy, where income support payments did not adequately meet living costs, or where carers weren’t eligible for payments despite already experiencing financial strain and significant illness-related costs;

‘I find usually, the amount of (income) support they get, it doesn’t even help cover, especially with their medical costs and stuff. . . I’ve even had patients and carers sometimes say it’s almost worth staying at work somehow if possible to be able to survive’. Palliative Care Worker, P7

Table 3.

Perceived consequences of social welfare policy for end of life carers.

Financial precariousness	Policy related	● Insufficient income support benefits to meet living costs● Ineligibility for payment (despite scarce resources)● Reduced private rental affordability
	Process related	● Persistent financial strain while awaiting claim outcome● Reduced budgeting/planning capacity due to uncertainty about outcome● Financial disadvantage related to online and ‘self service’ processes
Housing uncertainty	Policy related fears	● Concerns about obtaining recognition as a tenant, post-death● Concerns about future possibility of relocation from public housing and dislocation from informal supports post-death● Illness-related reduced private rental affordability (related to reduced income, illness related costs, income support benefit limits)
Processing implications	Related to wait times and delayed income support claims	● Financial strain/precariousness (see also above)● Psychological distress, sense of loss of control, uncertainty, obstruction, distrust● Anger directed at workers● Frustration experienced by workers● Death of person with life-limiting illness prior to outcome
	Related to inconsistent policy administration and information	● Carer frustration about varied nature of worker knowledge and information provision about housing and income support benefits● Varied application of discretion● Multiple visits to welfare agency offices necessitated
	Related to incorrect policy advice and policy confusion	● Carers not applying for income support when needed● Carers not seeking expedition of claims when needed● Carers making assumptions that income support application is finalised
Managing the work of system navigation	Navigating system features	● Dealing with bureaucratic burdens (e.g. significant documentation, time consuming application processes, delays, online processes)● Difficulties engaging with welfare agencies● Difficulties gathering evidence for income support claims● Negotiating inconsistent information and contact points
	Navigating (intersecting) social locations	● Low literacy● Non English speaking● Past negative experiences of agencies & institutions● Approaching death/bereavement and associated burdensSocially isolated

Welfare processes, such as lengthy and sometimes delayed determinations of income support claims (e.g. at one time, carer benefits were taking more than 16 weeks to process), were seen to be related to persistent financial strain and uncertainty; undermining management of ongoing living costs. Online processes were seen as difficult and financially disadvantageous for older carers or those with lower literacy, who may delay or avoid applications. Many participants noted housing-related uncertainty, with some carers reportedly ruminating about the possibility to be relocated from public housing following the death, fearing dislocation from informal supports and their home in bereavement. Several workers commented on the reduced affordability of private rental at end-of-life for carers and patients, due to limited or pending income support;

‘. . .a lot of people are in a private rental, and their income has dropped dramatically and they’re either both on income support or they’ve both got no income and are waiting for income support. So we’ve got that crisis of, someone working, (then) not working - primary income earner, they’re now the carer of that person and then they’re technically not going to be able to sustain, even with the income support benefits, the income that’s needed to sustain their private rental.’ Palliative Care Worker, P5

Participants associated the nature of income support processing with implications for carers, including distress, distrust and anger arising from lengthy wait times and delays, and at times, death of the patient prior to approval. Inconsistent information provision about payments and varied approaches to discretion and expediting claims were also identified as sources of mutual frustration for carers and workers;

‘And you feel like you’re the meat in the sandwich where you’re trying to follow the policy but you’re also feeling for the customer. . . they are like, you know, dire straits, no money, they’ve had to give up work and things like that to look after this person. . .’ Welfare Worker, W11

The provision of incorrect advice due to workers lacking understanding of welfare processes was related to carers not applying for benefits, or being unaware claims can be expedited. The work of ‘system navigation’, arising from accessing and coordinating health and social support aside from formal system navigators³⁸ was seen to be necessitated by welfare system features, including burdensome bureaucratic requirements, difficulties contacting agencies, and challenges related to gathering sufficient medical evidence to substantiate the life-limiting nature of illnesses. Certain (sometimes intersecting) social locations were repeatedly identified by participants as more likely to struggle with system navigation, and thus more likely to experience disadvantage (see findings regarding barriers, below).

Perceived resources and barriers in navigation of welfare needs

Participants viewed certain personal, interpersonal and structural conditions as resources that promoted effective navigation of welfare needs at end-of-life (Table 4). Carers with sufficient ‘system literacy’ (possessing skills and attributes in system navigation) and a willingness to practically prepare for death (e.g. completion of will, funeral planning) were seen as possessing qualities that contributed to proactive system navigation and follow up of issues. Strong connections with informal support networks were seen to facilitate access to practical assistance (e.g. transport to attend organisations) and advocates to whom system navigation tasks could be delegated. Identified structural resources which supported navigation of welfare needs included policy literate health and welfare workers with sound policy knowledge and the capacity to clearly communicate relevant information, and welfare workers who practiced discretion, particularly in response to financial strain at end-of-life. The engagement of ‘system mentors’ (e.g. hospital social workers) was seen to be protective; improving the capacity of carers to navigate systems, and facilitating access to advocacy and information;

‘They support their clients and they give supporting letters which actually help us because we need everything documented in the file. . . We don’t know their medical condition or. . . their history of life, right?’ Welfare Worker, W2

Table 4.

Perceived resources and barriers in the navigation of welfare needs by end of life carers.

	Resources	Barriers
Personal	● System literacy● Practical preparations for death	● Social locations associated with precariousness
Interpersonal	● Connections with informal support	● Isolation from informal support
Structural	● Worker attributes (policy literate, willingness to practice discretion)● Engaged system mentors (access to formal advocacy)● Responsive welfare agency culture (flexible engagement, processes tailored to end of life context)● Connected agencies (cultivation of relationships of care and outcomes)● System influencers (with power to effect structural changes)	● Worker attributes (lacking policy literacy)● Transactional welfare agency processes, policy and culture (barriers to engagement, barriers to comprehending policy, inconsistent practices, barriers to substantiating end of life)● System limitations (availability of other services and resources)● Fragmentation of services (lacking relationships of care, lacking infrastructure for care)

Responsive welfare agency culture was characterised as involving flexible engagement with carers (e.g. home visits to discuss rental arrears at end-of-life), and tailored processes, (e.g. expediting income support claims). Strategies which cultivated connection between health and welfare sectors were described as supporting relationships of care and an empathic understanding of other practice contexts that contributed to positive outcomes for carers – including interagency meetings and collaborative approaches to complex areas of need. An example shared by one palliative care worker highlighted an enhanced practice relationship arising from the profound impact of a joint assessment undertaken with a welfare worker;

‘She (welfare worker) rang me the next day, she goes, “I don’t know how you guys do what you do because that has shaken me.” I said, “That’s the coalface of our work, but I need to understand the coalface of your work.” And then from there, we’ve, mutual respect. . . she said meeting (the patient and carer) changed the whole way she thinks about the referrals that we’re sending. Because what does cancer mean to people? What does metastatic disease mean? What does homelessness mean? They deal with homelessness all the time, but what does it mean?’ Palliative Care Worker, P5

Several workers also discussed the way in which senior welfare leadership with power to influence practices (e.g. around applying discretion) shaped in-office welfare agency culture and support for carers.

Specific barriers were viewed to hinder navigation of welfare needs at end-of-life. Workers associated certain social locations related to education, ethnicity and class with precariousness. Carers with lower levels of literacy or from non-English speaking backgrounds were seen to experience more difficulties completing claims, managing online processes, and comprehending their rights. Lower levels of systems literacy, characterised by a lack of policy and process knowledge, and sometimes the erosion of personal agency arising from cumulative and negative experiences of welfare agencies due to intergenerational poverty, were viewed as leading to a sense of resignation to poor outcomes;

‘The people won’t do anything about it (following up problems with claims and income support) because they don’t know how to agitate. But if you did it over in (another, more affluent region), there’d be a demonstration and decisions would be reversed. But it doesn’t happen in places like this, you know. Because people just don’t do it, they just accept, which is awful’. Palliative Care Worker, P4

Additionally, the context of caring for a deteriorating person was recognised as contributing to emotional overwhelm and diminished capacity to attend to welfare concerns;

‘. . .they’ve got other priorities. They don’t want to come and sit here. I mean, like if you look outside (into front of welfare office), if you were to walk in and you’ve got someone that’s dying at home, you’re not going to stand in that queue. You just got to walk straight back out’. Welfare Worker, W11

Isolation from informal networks (e.g. due to geographical distance) was viewed as undermining support with system navigation. Structural barriers included health workers lacking policy literacy and clarity about eligibility for benefits; relying on incorrect information or avoiding proactively providing information;

‘Sometimes the information you get. . . is unclear. . . what’s printed out there and accessible to the everyday person, in the past to me hasn’t been very penetrable. It hasn’t made a lot of sense. It’s been a little unclear about what (the) entitlements would be. That’s why I’m often saying to people, “Yeah, go in (to the welfare agency in person), you have to talk about what’s particular to your circumstances."’ Palliative Care Worker, P1

Participants identified aspects of transactional welfare agency cultures that hindered system navigation at end-of-life, including lengthy wait times on the phone and in-office. A number of workers commented on payment delays due to doctors submitting incomplete or insufficient evidence to successfully ‘prove’ an illness is life-limiting. Other noted system limitations included limited psychosocially focussed health professionals within health services, to facilitate needed advocacy at end-of-life. Fragmentation of services through reduced inter-agency connections was described as contributing to the erosion of working inter-agency relationships, with good outcomes for carers at times reliant upon arbitrary connections between particular workers that were not equitable;

‘You don’t want it, I suppose, to be relational in that way, just depending on one person being very helpful. You want a system that works where health employees can liaise with other government agencies in the best interests of our people’. Palliative Care Worker, P1

The processing of income support claims at external sites (rather than in local offices) was also described as a barrier to enabling frontline workers to accurately update carers on the progress of claims;

‘Sometimes you do sound like a broken down record and it sounds really, really bad because you don’t want to sound like you’re fobbing off a customer for any purpose. But I think that’s how government’s made it. Like you know, at one point in time, every office, any claims that came in, (the local office) was responsible for the processing and they were accountable to get those things done on time. Whereas now. . . someone in (other cities around country) could be processing anything from anywhere around Australia. . . It just makes us feel that, “Are we giving the customer the right message? Are we giving them those correct timeframes?’ Welfare Worker, W11

Participants also highlighted diminished infrastructure between agencies, with lacking direct telephone connections between workers and reduced networking opportunities, undermining support coordination.

Discussion

Main findings and implications for policy and practice

This study presents nuanced understandings of the navigation of social welfare needs while providing informal end of life care, in an area of relative socioeconomic disadvantage. To our knowledge, perspectives of palliative care and welfare workers have not been explored in this domain. Synthesis of their reflections offers insights regarding structural factors that may shape experiences of system navigation and caring at end-of-life. Welfare policy and processes were associated with a constellation of concerns, with potential to contribute to ‘structural burden’ for carers, or stress arising from negotiating complicated and fragmented systems,³⁷ and psychosocial precariousness.

Observations regarding the consequences of financial difficulties and employment-related strain encountered by end of life carers are consistent with previous studies.^12,39,40 Identified structural barriers such as complex application systems and delayed benefits reflect findings that government financial support processes related to end of life caring in developed countries are time consuming, repetitive,¹² and obstructive.¹¹ Findings provide further support for differentiating benefits for carers from existing ‘generic’ payments, given the unique, dynamic and complex circumstances associated with end-of-life.^11,12 Findings also suggest end of life caring may constitute another critical period of the life course^41,42 in which the effects of public policy are heightened, especially for those occupying vulnerable social locations. Further investigation of approaches to providing more responsive income support for end of life carers is needed.

The concept of precariousness has been utilised in the study of employment⁴³ and isolation,³³ and resonates with our findings regarding welfare needs and caring at end-of-life. Diminishing or difficult to access resources, alongside welfare policy and processes, appeared to contribute to multifaceted uncertainty and unpredictability³³ in relation to income, housing and psycho-social wellbeing. Formal health systems have also been found to amplify the vulnerability of carers by failing to acknowledge burdens associated with meeting basic needs at end-of-life.⁵ Recognition of this precariousness identifies the role of structural determinants and challenges the rhetoric of individual responsibility that typically pervades health and social care within liberal welfare states, imposing a sense of ‘moral judgement’ on carers¹⁶ who may struggle to successfully navigate forces beyond their influence. In a climate of shrinking welfare states and ‘economic tightening’, 3 greater attention to consequences of public policy and institutional processes is essential. This necessitates an ‘upstream’ focus,⁴⁴ beyond interventions focused on equipping or educating individual carers to navigate end-of-life. Research exploring longer term socio-economic consequences of structural factors associated with caring at end-of-life is required, as these may be hidden from the focus of specialist palliative care services and possess implications for bereavement.

Findings point to repercussions of welfare processes for structurally vulnerable carers. Certain social locations related to age, literacy, language and pre-existing poverty appeared to be more likely to be associated with difficulties navigating welfare systems; potentially at greater risk of disadvantage. At end-of-life, poor outcomes related to complex care systems for the structurally vulnerable^5,19 and considerable inequity in financial support¹¹ have been identified. Palliative care clinicians must therefore perceive social needs related to income support and housing as an ‘essential component(s) of palliative care’⁵ and develop current social policy literacy to support timely access to assistance. Additionally, further understanding of the exercising of discretion in administering welfare policy is needed, given it appears to benefit carers on an ad hoc basis, cultivating inequity. Access to needed resources should not be facilitated by chance interactions, contingent upon a worker’s level of policy knowledge or approach to discretion. Findings also underscored problematic fragmentation between organisations, with difficulties establishing relationships of care and diminished opportunities for collaboration. There were exceptional examples of working relationships, personally carved out between particular individuals. Yet this again perpetuates inequitable meeting of needs, given ‘silo-ed’ systems undermine continuity of care and are particularly detrimental for structurally vulnerable populations.⁵ Our findings signify the need for systemic investment in cultivating local connections between palliative care and welfare sector workers, such as inter-agency practice forums, and professional development regarding the social determinants of caring and life-limiting illness. Such strategies may not only better serve vulnerably positioned carers, but may provide supportive infrastructure for palliative care and welfare workers in negotiating personal and professional challenges of working with people in the context of life-limiting illness, welfare needs and grief.

Limitations

As welfare policy is subject to change and varies across socio-political contexts, and given the lack of male participants, findings need to be carefully interpreted. Since this study was undertaken, COVID-19 has also led to changed welfare administration and policy in Australia, although these changes may be temporary. Regardless, findings affirm and extend the limited existing knowledge in this domain, with implications for other liberal welfare states.

Conclusion

Given the expected increase in demand for palliative care^45,46 with significant consequences for health and welfare sectors, exploration and evaluation of approaches for addressing structural determinants of caring experiences is crucial, particularly in relation to those positioned as structurally vulnerable. Organisational leadership across both sectors is vital to this end, reflective of recognition that ‘top down’ political commitment and policy action across agencies is essential for creating supportive and equitable environments,⁴⁷ in contrast to those that perpetuate precariousness for end of life carers.

Footnotes

Acknowledgements

The authors wish to thank the participants for their time and valuable contributions. The authors also acknowledge Kim Hobbs (Western Sydney Local Health District), and management within the Department of Human Services, Housing New South Wales and Western Sydney Local Health District for their support of this study.

Author contributions

KB led study design, data collection, analysis, and writing and revision of the manuscript. JL, JT and MD contributed to study conceptualisation, data analysis and critically revised drafts of the manuscript.

Data management and sharing

Data are stored within Western Sydney Local Health District, data are not shared. The interview framework can be obtained from the authors on request.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: KB received financial support for transcription costs from Western Sydney Local Health District (Board Bursary, 2018) and The University of Technology Sydney (Health Services Research and Practice Development Award, 2019).

Ethical approval

Ethical approval was granted from Western Sydney Local Health District Human Research Ethics Committee on 26th September 2018 (2018/ETH00269), and ratified by The University of Technology Sydney Human Research Ethics Committee on 13th November 2018 (ETH18-3072).

ORCID iD

Kristin Bindley

References

Funk

Stajduhar

Toye

, et al. Part 2: Home-based family caregiving at the end of life: a comprehensive review of published qualitative research (1998–2008). Palliat Med 2010; 24(6): 594–607.

Neimeyer

Burke

LA.

Complicated grief and the end-of-life: Risk factors and treatment considerations. In Werth

(ed) Counselling clients near the end-of-life: A practical guide for mental health professionals. New York: Springer Publishing Company, 2012, pp. 205–228.

Broom

Kirby

Kenny

, et al. Moral ambivalence and informal care for the dying. Sociol Rev 2016; 64(4): 987–1004.

Kellehear

Compassionate communities: end-of-life care as everyone’s responsibility. QJM 2013; 106(12): 1071–1075.

Stajduhar

Mollison

Giesbrecht

, et al. “Just too busy living in the moment and surviving”: barriers to accessing health care for structurally vulnerable populations at end-of-life. BMC Palliat Care 2019; 18(11): 1–14.

Gallagher

. Finances. In Oliviere

Monroe

(eds). Death, dying, and social differences. 1st ed. Oxford: Oxford University Press, 2004, pp 165–79.

Gardiner

Brereton

Frey

, et al. Exploring the financial impact of caring for family members receiving palliative and end-of-life care: a systematic review of the literature. Palliat Med 2014; 28(5): 375–390.

Lewis

DiGiacomo

Currrow

, et al. Dying in the margins: understanding palliative care and socioeconomic deprivation in the developed world. J of Pain Symptom Manage 2011; 42(1): 105–118.

Blank

Burstrom

Limiting long-term illness and the experience of financial strain in Sweden. Scand J Public Health 2002; 30(1): 41–46.

10.

Hanratty

Jacoby

Whitehead

Socioeconomic differences in service use, payment and receipt of illness-related benefits in the last year of life: findings from the British Household Panel Survey. Palliat Med 2008; 22(3): 248–255.

11.

Gott

Allen

Moeke-Maxwell

, et al. ‘No matter what the cost’: a qualitative study of the financial costs faced by family and whnau caregivers within a palliative care context. Palliat Med 2015; 29(6): 518–528.

12.

Gardiner

Taylor

Robinson

, et al. Comparison of financial support for family caregivers of people at the end of life across six countries: a descriptive study. Palliat Med 2019; 33(9): 189–1211.

13.

Essue

Beaton

Hull

, et al. Living with economic hardship at the end of life. BMJ Support Palliat 2015; 5(2): 129–137.

14.

Mantoura

Morrison

Policy approaches to reducing health inequalities. Montreal, QC: National Collaborating Centre for Healthy Public Policy, 2016.

15.

Bryant

Raphael

Intersectionality, the welfare state and women’s health. Womens Health Urban Life 2018; 13(2): 3–17.

16.

Reimer-Kirkham

Stajduhar

Pauly

, et al. Death is a social justice issue: perspectives on equity-informed palliative care. Adv Nurs Sci 2016; 39(4): 293–307.

17.

Quesada

Hart

Bourgois

Structural vulnerability and health: Latino migrant laborers in the United States. Med Anthropol 2011; 30(4): 339–362.

18.

Ahmed

Bestall

Admedsai

, et al. Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals. Palliat Med 2004; 18: 525–542.

19.

Stajduhar

Giesbrecht

Mollison

, et al. Caregiving at the margins: an ethnographic exploration of family caregivers experiences providing care for structurally vulnerable populations at the end-of-life. Palliat Med 2020; 37(7): 946–953.

20.

Bindley

Lewis

Travaglia

, et al. Disadvantaged and disenfranchised in bereavement: a scoping review of social and structural inequity following expected death. Soc Sci Med 2019; 242: 112599.

21.

Australian Bureau of Statistics. Index of relative socio-economic disadvantage interactive map, http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/by%20Subject/2033.0.55.001~2016~Main%20Features~IRSD%20Interactive%20Map~15 (2016, accessed 1 May 2020).

22.

O’Neill

. Recession will hit job-poor parts of Western Sydney very hard. The Conversation [Online news source]. 2020 Jun 30 [cited 2020 Aug 16]. Available from: https://theconversation.com/recession-will-hit-job-poor-parts-of-western-sydney-very-hard-139385

23.

Gray

Theoretical perspectives and research methodologies. In Doing research in the real world. Los Angeles: Sage Publications, 2009, pp. 14–38.

24.

Creswell

JW.

Philosophical, paradigm and interpretive frameworks. In Qualitative inquiry and research design: choosing among five approaches. 2nd ed. Thousand Oaks CA: Sage Publications, 2007, pp 15–31.

25.

Thorne

Reimer Kirkham

MacDonald-Emes

Interpretive description: A noncategorical qualitative alternative for developing nursing knowledge. Res Nurs Health 1997; 20(2): 169–177.

26.

Thorne

Reimer Kirkham

O’Flynn-Magee

The analytic challenge in interpretive description. Int J Qual Methods 2004; 3(1): 1–11.

27.

Thorne

Interpretive description: qualitative research for applied practice. 2nd ed. New York: Routledge, 2016.

28.

DiCicco-Bloom

Crabtree

BF.

The qualitative research interview. Med Educ 2005; 39(1): 314–321.

29.

Buckle

Corbin Dwyer

Jackson

Qualitative bereavement research: incongruity between the perspectives of participants and research ethics boards. Int J Soc Res 2010; 13(2): 111–125.

30.

Ritchie

Lewis

Qualitative research practice: a guide for social science students and researchers. London: Sage Publications, 2003.

31.

Smith

Firth

Qualitative data analysis: the framework approach. Nurs Res 2011; 18(2): 52–62.

32.

Sandelowski

Barroso

Classifying the findings in qualitative studies. Qual Health Res 2003; 13(7):905–923.

33.

Hunt

MR.

Strengths and challenges in the use of interpretive description: reflections arising from a study of the moral experience of health professionals in humanitarian work. Qual Health Res 2009; 19(9): 1284–1292.

34.

Lee

CG.

Reconsidering constructivism in qualitative research. Educ Philos Theory 2012; 44(4): 403–412.

35.

Guest

Bunce

Johnson

How many interviews are enough? An experiment with data saturation and variability. Field Methods 2006; 18(1): 59–82.

36.

Carnevale

FA.

Authentic qualitative research and the quest for methodological rigour. Can J Nurs Res 2002; 34(2):121–128.

37.

Portacolone

The notion of precariousness among older adults living alone in the US. J Aging Studies 2013; 27: 166–174.

38.

Funk

Dansereau

Novek

Carers as system navigators: exploring sources, processes and outcomes of structural burden. Gerontologist 2019; 59(3): 426–435.

39.

Hanratty

Holland

Jacoby

, et al. Review article: financial stress and strain associated with terminal cancer—a review of the evidence. Palliat Med 2007; 21(7): 595–607.

40.

Holtslander

Duggleby

The psychosocial context of bereavement for older women who were caregivers for a spouse with advanced cancer. J Women Aging 2010; 22(2): 109–124.

41.

Shaw

Dorling

Gordon

, et al. The widening gap: health inequalities and policy in Britain. Bristol: The Policy Press, 1999.

42.

Raphael

Bryant

Power, intersectionality and the life-course: identifying the political and economic structures of welfare states that support or threaten health. Social Theor Health 2015; 13: 245–266.

43.

Vives

Amable

Ferrer

, et al. Employment precariousness and poor mental health: evidence from spain on a new social determinant of health. J Environ Public Health 2013; 2013: 1–10.

44.

Keleher

Reframing health promotion. In Keleher

MacDougall

Murphy

(eds) Understanding health promotion. Melbourne: Oxford University Press, 2007, pp. 29–46.

45.

Etkind

Bone

Gomes

, et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Med 2017; 15(1): 102.

46.

Australian Institute of Health and Welfare. Palliative care in Australia, https://www.aihw.gov.au/reports/palliative-care-services/palliative-care-services-in-australia/contents/overview (2019, accessed 6 April 2020).

47.

Baum

Cracking the nut of health equity: top down and bottom up pressure for action on the social determinants of health. Promot Educ 2007; 14(2): 90–95.