Financial Barriers Faced by the Family Caregiver to Cancer

• Research article
• Open up Access
• Published: 19 May 2020

Disinterestedness and the financial costs of breezy caregiving in palliative care: a critical debate

• Jackie Robinson²,
• Michael Connolly³,
• Claire Hulme⁴,
• Kristy Kang²,
• Christine Rowland⁵,
• Phil Larkin⁶,
• David Meads^vii,
• Tessa Morgan⁸ &
• Merryn Gott²

BMC Palliative Intendance volume 19, Article number:71 (2020) Cite this article

• 5053 Accesses

• nine Citations

• 41 Altmetric

• Metrics details

Abstract

Background

Informal caregivers represent the foundation of the palliative care workforce and are the master providers of terminate of life care. Fiscal pressures are among the most serious concerns for many carers and the financial burden of terminate of life caregiving can be substantial.

Methods

The aim of this critical debate paper was to review and critique some of the key evidence on the financial costs of informal caregiving and draw how these costs correspond an equity issue in palliative intendance.

Results

The fiscal costs of breezy caregiving at the terminate of life can exist significant and include carer fourth dimension costs, out of pocket costs and employment related costs. Financial burden is associated with a range of negative outcomes for both patient and carer. Evidence suggests that the fiscal costs of caring are not distributed equitably. Sources of inequity are reflective of those influencing admission to specialist palliative care and include diagnosis (cancer vs not-cancer), socio-economic condition, gender, cultural and indigenous identity, and employment status. Effects of intersectionality and the cumulative issue of multiple risk factors are also a consideration.

Conclusions

Various groups of informal end of life carers are systematically disadvantaged financially. Addressing these, and other, determinants of end of life care is central to a public health approach to palliative care that fully recognises the value of carers. Farther enquiry exploring these areas of inequity in more depth and gaining a more detailed understanding of what influences financial burden is required to accept the side by side steps towards meeting this aspiration. Nosotros will address the conclusions and recommendations we have made in this paper through the work of our recently established European Association of Palliative Intendance (EAPC) Taskforce on the financial costs of family unit caregiving.

Peer Review reports

Background

The benefits of palliative care for those approaching the end of life and their families are universally acknowledged. Despite this there is sparse prove on the costs, cost effectiveness and equity impact of palliative intendance, in part due to the difficulties associated with measuring costs and outcomes in this context [1, 2]. One of the fundamental issues in measuring these costs is how to capture the economic value of informal caregivers (as well called family caregivers). In this context, informal/family unit caregivers are those in a close supportive relationship with a patient, who share in the illness experience and undertake vital care work and emotional direction. They are often, but not always, family members [3]. Breezy caregivers stand for the foundation of the palliative intendance workforce and are the master providers of terminate of life care [4]; it is estimated that they provide 75–90% of habitation-based treat people who are nigh the end of life. Moreover, demand for breezy intendance is rising every bit chop-chop ageing populations mean that people are living longer with more circuitous health and social palliative intendance needs [v]. In this context palliative care refers to the care of those with life threatening illness, although it is acknowledged that many of the bug identified here will also apply to carers of those with chronic conditions.

Many countries have in recent years adopted palliative care policy which shifts the focus of palliative care provision out of hospitals and into the community [half dozen]. An important but often neglected consequence of this policy shift is the bear on on informal caregivers, for whom a move out of hospital and into the customs would accept significant implications [7, 8]. For example, a Canadian study in 2015 establish that breezy caregivers of patients dying at dwelling house spent more than twice as much time on unpaid caregiving compared with those caring for patients dying in infirmary [9].

Financial pressures are among the almost pressing concerns for many carers. In a contempo Eurobarometer survey of preferences for government support, breezy caregivers in Europe identified financial remuneration equally their well-nigh important back up demand [10]. Whilst there is increasing recognition inside authorities policies of the contribution of family carers, financial support can be hard to admission, dependent on complex eligibility criteria and ofttimes comes with a merchandise off in terms of restrictions on employment, farther limiting opportunities for managing fiscal burden [4].

Furthermore, there is evidence that the costs of breezy caring correspond the latest in a growing list of disinterestedness concerns relating to palliative care. A 2015 report commissioned past Marie Curie detailed substantial inequities in access to specialist palliative care across the Britain and like evidence exists from other countries [xi, 12]. Specialist palliative care is skewed towards those with cancer; is oftentimes poorly delivered in care-home settings; and is less available for older people, for those living in areas of social impecuniousness, for people from ethnic minority backgrounds, and for those with enduring mental illness [13, fourteen]. These are notable areas of concern, and we argue that the financial costs of caregiving should be recognised aslope other well recognised inequities in palliative care, and as a key social determinant of end of life experience. Such recognition is important if measures to address the financial impact of caregiving are to successfully address the current inequities outlined below. Equally Giesbrecht et al. (2012) argue: "without considering diversity, patterns in vulnerability and inequity are disregarded, and thus continually reinforced in health policy." [fifteen]

It is inside this context that the European Association of Palliative Care (EAPC) has recently established a taskforce, with a view to furthering research and debate on the financial costs of informal caregiving in palliative intendance. The taskforce sits inside the EAPC Reference Grouping for Family Carer enquiry and comprises an international network of researchers, clinicians and policymakers. During a workshop held in Sheffield, UK over three days in July 2019, this interdisciplinary group critically reviewed the existing evidence, identified gaps in the show base, and proposed a strategy for further research. The most prominent issue identified was inequity in financial burden, therefore the aim of this critical fence newspaper is to summarise and critically hash out the prove on this effect. First, we review some of the key prove on the financial costs of informal caring, then we critically hash out a diverse evidence base which points to equity issues, and finish with recommendations for farther research and how these may be achieved.

Discussion

What practise we know about the costs of caring and the impact of these costs? A summary of existing evidence

Hither we summarise a cross-section of the existing evidence in this area. This is not intended as a comprehensive or systematic review of evidence, rather a summary of recent key papers published in this area. Whilst we take attempted to include a range of international testify, the lack of translation facilities means that literature from the U.k. and other English speaking countries predominates.

The financial costs of informal caring for a person approaching the end of life can be significant, and a modest but expanding prove base reflects the range and scope of these costs. A 2014 systematic review of literature on fiscal costs incurred by informal caregivers identified a very limited show base [sixteen]. All the same there was evidence to propose that these costs are significant. Costs can exist broadly categorised into three main areas: work related costs (costs related to changes in employment), carer time costs (cost related to fourth dimension investment required past carers) and out-of-pocket costs (direct outlays of money). A 2015 qualitative report of bereaved carers confirmed that the costs of caring at the end of life are significant and include a range of both straight (e.g. send, food, medication) and indirect costs (e.yard. related to employment, carer time, carer wellness) [7]. The palliative care context was as well found to increment costs, as meeting the ill person'south needs was prioritised over price. Over recent years a growing number of international studies have confirmed that the financial costs of caring are a serious issue beyond the developed globe [17,xviii,19,twenty,21]. Furthermore, evidence suggests that informal carers make a huge financial contribution to the wider healthcare organisation, with studies estimating that informal caregiving accounts for upward to 70% of full health care costs [22].

Astringent caregiving burden is experienced by many families as a result of financial bug and a lack of fiscal support. Major life changes are oft required due to the cost of illness and caring, including moving firm, delaying education or delaying medical care for other family members [7, sixteen]. Financial burden may also touch on on employment, as carers may be forced to modify their hours of employment to cope with increased financial expenditure, or to rely on annual get out or sick leave to maintain a salary [iv]. The long term effects of these employment changes on chore opportunities and earning potential are also cause for concern.

As noted above, the palliative intendance context can increment the financial burden for informal caregivers, and caregiver costs may increment as death approaches. In a study exploring the trajectory of palliative care costs over the terminal five months of life in Canada, informal care costs were plant to increment significantly from the fifth calendar month to the tertiary calendar month preceding death [17]. Similarly, Chai et al. (2014) [22] found that monthly unpaid caregiving costs increased exponentially with proximity to death. This prove emphasises the distinct challenges faced by informal caregivers in palliative care. Next, we become on to hash out how these considerations influence the costs of caring and why some carers are more impacted than others, highlighting equity concerns related to financial back up for informal carers.

What is equity in healthcare, and why do the costs of informal caring represent an disinterestedness issue? A critical word

The show presented thus far outlines the financial impact of informal caregiving. Next, we consider some definitions relating to the concept of equity in healthcare. The distinction between equity and equality is important as equity, different equality, is a normative concept. Inequities in the utilize of wellness care are inequalities (differences) which are considered to be unfair or unjust [23]. Therefore, inequities only ascend when variations in utilise between groups cannot be attributed to variations in need [24].

It is well established that people dying from cancer receive better access to specialist palliative care than those with non-cancer conditions [25], and this diagnosis related inequity extends to the costs of caring. A 2014 population-based study explored brunt among informal carers of people at the cease of life across iv European countries [26]. The authors reported that in Kingdom of belgium and Italia, carers of people with a non-cancer illness had significantly higher odds of having difficulties in covering costs, than carers of people with cancer. While this report provides some evidence on inequity related to diagnosis, the majority of research on the costs of caring focuses on carers of people with cancer, so the evidence base of operations for not-cancer financial brunt is thin.

An additional challenge is that non-cancer carers may be ineligible for some types of financial back up or benefits, which can exacerbate burden [27]. Across most developed countries charitable grant funding can be sought to help supplement a patient or carer'due south income, in cases of extreme financial hardship. Grants are provided past a range of charitable organisations, however charities for those affected past cancer are the well-nigh prevalent and offer the about generous funding [27].

Another area of inequity is socio-economic condition; those who are from lower socio-economic groups consistently face up the most astringent financial burden [28]. This in itself relates to education, as there is a strong correlation between level of education and wealth; across Europe those with a loftier level of didactics earn upward to lxx% more than those with a depression level of education [29]. The consequences of fiscal brunt for those who are already living in deprivation can also be catastrophic. Studies accept reported that for those with limited financial resources, the financial costs of caregiving can issue in having to motility home, become without food, incur considerable debt [7] or resort to nutrient banks and charitable handouts to run across even the most basic needs [27]. Finally, some people may have a choice about whether to care, but those who are less wealthy with limited financial reserves have less choice, every bit the alternatives are greatly limited [4]. Care work also relates to social class, and increasingly to migration. While some European countries notwithstanding rely on local and/or family labour to provide paid and unpaid care, Western European countries increasingly rely on migrant labour to supply care. Women are also more than probable to be both unpaid and home carers due to cultural norms and values. This impacts negatively on career and employment choices, oftentimes with long-term financial and wellness costs, such as loss of income, pension rights and failure to address their own health needs because of the burden of caregiving. Hence caregiving also raises questions of inequities related to gender, migration and culture [30].

There is considerable evidence globally to confirm that women are more probable to be caregivers for ill and ageing family members than men [31, 32]. Indeed, women report greater fiscal problems equally a result of caregiving than men [33], although data specific to palliative intendance are express and contradictory. Every bit women are more likely to exist caregivers than men, their opportunity costs are higher, particularly if viewed in terms of lifetime earnings. Many women take on sequential caring responsibilities up until advanced age, impacting upon the nature of employment they are able to pursue and their career advancement [34, 35]. Caring responsibilities likewise limit educational opportunities; this is particularly the instance where there is a cultural imperative for young women to care for older family members [7]. Given the heavily gendered nature of caregiving in palliative care, we would argue that whatsoever inquiry examining financial costs must consider both out of pocket and opportunity costs related to this work within a gendered context.

A number of studies have explored the impact of ethnicity and cultural identity on the financial burden of caregiving. With regards to ethnicity, the majority of studies report that ethnic minority groups are more vulnerable to financial hardship than white ethnic groups [36, 37]. Cultural identity can too influence costs. For example, in a qualitative study of bereaved caregivers in New Zealand, Māori carers faced more severe financial brunt than non-Māori due to cultural values. These included the cultural imperative to return to ancestral homes earlier decease and/or post death (tangihanga) which incurred additional transport costs [seven].

Bear witness is also beginning to emerge that employment status may represent an disinterestedness issue. A 2008 analysis of the British Household Panel survey (BHPS) revealed that those with caring responsibilities earned significantly less than those with no caring responsibilities [38]. Evidence indicates that working carers may have to take unpaid leave to provide intendance, reduce their working hours, change to a lower paid more flexible job, or give up work altogether [4]. Once these changes in employment accept been made, it can be difficult to resume a pre-caring role, and many struggle to return to work afterwards a menstruation of providing care. The touch of these employment changes on a carer's financial situation can be pregnant [4, 38].

Finally, in line with the broader turn in public health, the effects of intersectionality should be considered. This approach holds that individual'due south experiences are shaped "not by a single axis of social division (such as gender, race, class) … but by many axes that work together and influence each other". Whilst we accept described a number of individual factors that may predispose carers to increased fiscal burden, certain groups of carers will autumn into multiple categories and are likely to exist nigh at gamble due to the cumulative result of chance factors. Applying an intersectional perspective Giesbrecht and colleagues (2012) constitute that culture, gender, geography, life-phase and material resources overlapped to explicate people's varied up-take of the Canadian Compassionate Care Benefit (a federal do good which reimburses a caregiver'due south earnings, and so they can provide palliative care) [15]. In this vein, future research needs to acknowledge the full range of factors that could financially affect caregivers and where applicable conduct comparative analyses of economic costs across and/or inside groups of caregivers to sensitively examine variation [39].

Challenges and recommendations

The financial costs of family caregiving are a significant issue in palliative care, yet until now these costs have not been framed every bit an equity business organization. Conceptualizing informal caregiver financial brunt as an equity upshot helps identify how this inequity tin exist addressed and draws attention more widely to the social determinants of care at the finish of life, a central consideration nether a public wellness arroyo to palliative care [12, 40].

Disinterestedness concerns are a persistent consequence in palliative care; a wide range of factors are known to determine admission to palliative care, and diverse social determinants are known to impact on the cease of life feel. People with not-cancer diagnoses, older people [41], ethnic minority and indigenous groups, gypsies and travellers, homeless and LGBT people [42] and those from lower socio-economic groups [40] are all known to have less access to palliative care. Although these inequities persist, there is an increasing acknowledgement of a demand for solutions. Policy options to address inequity include resources published past NHS England to improve terminate of life treat gypsies, travellers, LGBT people and homeless, those held in prisons [43], and those with learning disabilities [44]. To reflect the challenging moving picture beyond Europe, the EAPC has fix taskforces to accost inequity in a number of the domains mentioned hither, notably people with non-cancer diagnoses, prisoners and the LGBT community. As we accept outlined above, the fiscal costs of informal caring represent another key area of inequity in palliative care, and in recognition we have had a proposal accepted past the EAPC to establish a new taskforce to develop enquiry in this surface area and address some of the challenges identified here (https://www.eapcnet.european union/eapc-groups/task-forces/costs-of-family-caregiving).

One persistent issue which exacerbates these challenges is the lack of a whole organisation or societal perspective for the fashion we evaluate cost-effectiveness in palliative care. Regulatory authorities generally recommend that economic evaluations take the perspective of the health and social care provider. For example, in its reference case the National Institute for Wellness and Care Excellence (NICE) in the United kingdom of great britain and northern ireland recommends a perspective of 'NHS and personal and social services' [45]. This does non include patients' costs, caregiver time contributions to care, or caregiver costs [46]. Thus, now an intervention could exist shown to be price-effective from the health perspective but actually increment costs for the carer. Furthermore, since current evaluations focus on efficiency and not disinterestedness, cost-effective interventions could also worsen inequalities. Methods for handling equity are bachelor in wellness economics merely at nowadays are rarely used [47]. Whilst there has been some debate regarding the wellness and social care perspective (and indeed the Nice guidance is currently nether review) [48, 49], it is even so not clear how or whether a societal perspective should be implemented. Financial transfers which would be needed between different sectors may not exist possible and difficult questions are posed regarding trade-offs between health, economic effects and other social considerations. In improver information technology is not articulate how a range of activities including informal caregiver time contributions and impacts on employment ought to be valued [49]. Even so, guidance elsewhere (for instance from the second panel on cost-effectiveness in the US) does recommend an additional broader perspective and this could adopted more than widely [l].

A further claiming comes from the lack of a robust prove base of operations in this area, and difficulties with undertaking research on this topic. Evidence is required not but for resources rich countries, but also for low and middle income countries where the responsibilities of informal carers may differ. Evidence is as well required which tackles how to back up carers who are facing fiscal burden. A public wellness approach, challenging assumptions regarding who shoulders the financial responsibility of caring for the dying, would be appropriate. Methodological challenges also demand to be considered [51], these include the sensitivity of discussing palliative intendance and financial bug, and stigma effectually welfare and benefits. Finally, a lack of consensus around appropriate designs and an absence of specialist information drove tools [52] contribute to the barriers to inquiry. A commitment to co-production, working aslope patients and carers to design adequate, sensitive and robust research is essential if we are to overcome these challenges and expand the evidence base in this important area.

Despite sparse prove and the presence of regulatory systems which overlook breezy carer contributions, we are able to suggest some policy recommendations for addressing inequity. Provision of financial or monetary back up for breezy carers through benefits is a clear and effective machinery for reducing financial burden, notwithstanding evidence suggests that this back up is under-utilised and inequitably distributed in palliative intendance [27]. Policy options to mitigate this could include relatively subtle changes to the way financial support is implemented. For case, ensuring processes and systems practise not unfairly penalise particular groups of patients/carers, consulting widely and across all groups when planning and implementing welfare change, relying on need rather than prognosis as a means of assessing eligibility and recognising that unlike groups of informal carers may have different needs. Communities and social networks may too play a role in recognising and supporting the contribution of breezy carers. For example, the Compassionate City Lease is a set of principles which comprehend the civic aspect of our lives, including how we can become engaged in activities in the workplace which promote compassion and support connected employment [53].

There is as well a potential function for health and social care professionals in recognising fiscal burden and signposting to appropriate support. The Carer Back up Needs Assessment Tool (CSNAT) is an prove-based tool adult for use in palliative intendance, which helps health and social care professionals work with carers to facilitate tailored, person-centred back up [54]. Financial issues and work are assessed every bit function of CSNAT, emphasising the importance of these issues. If fiscal issues are identified and then support such as an information leaflet detailing support for informal carers in palliative care could be advisable, for example this data leaflet detailing carer support in the UK (https://www.sheffield.ac.uk/health-sciences/our-research/nursing-themes/palliative/fiscal-support-family-caregivers).

Limitations

As this is a disquisitional fence newspaper we take identified and critically appraised relevant literature but did non undertake a comprehensive or systematic bear witness review, therefore some papers containing useful data may have been omitted. Nevertheless, we did describe on previous relevant systematic reviews where they are available and the paper was written equally a collaboration between field of study experts and expert methodologists to help ensure an appropriate balance between evidence review and debate. Whilst nosotros have attempted to provide a global oversight of evidence, we acknowledge that much of the prove presented is from English speaking countries every bit we had no resource for translation costs. The perspective of non-English language speaking countries is therefore particularly important to institute in future enquiry.

Conclusion

This review and critical discussion of literature has outlined the range and scope of the financial costs of informal caregiving and has provided evidence that these costs represent an equity business organisation in palliative intendance. Nosotros have described how diverse groups of informal carers are systematically disadvantaged financially. Addressing these, and other, determinants of terminate of life intendance is key to a public wellness approach to palliative intendance that fully recognises the value of the caring work undertaken by families, friends and their wider communities at cease of life. Further research, exploring these areas of inequity in more than depth and gaining a more detailed agreement of what influences fiscal burden is urgently required. Through the work of our recently established EAPC Taskforce nosotros hope to be able to address some of these recommendations, and we welcome new members with interest and expertise – including postgraduate research students and before career researchers - to join us in this international endeavour.

Availability of information and materials

Supporting information tin exist accessed by contacting the lead author.

Abbreviations

CSNAT:

Carer Support Needs Cess Tool

EAPC:

European Clan of Palliative Care

LGBT:

Lesbian, gay, bisexual and transsexual

NHS:

National Health Service

NICE:

National Institute of Care Excellence

Britain:

United Kingdom

References

1. Gardiner C, Ryan T, Gott M. What is the cost of palliative care in the UK? A systematic review. BMJ Support Palliat Care. 2018;8(iii):250–vii.

   PubMed  Article  Google Scholar

2. McCaffrey Northward, Cassel JB, Coast J. Bringing the economical cost of informal caregiving into focus. Palliat Med. 2015;29:866–7.

   PubMed  Article  Google Scholar

3. National Institute for Wellness and Care Excellence (Squeamish) 2004. Guidance on cancer services: improving supportive and palliative care. London: NICE; 2004.

   Google Scholar

4. Hulme C, Carmichael F, Meads D. What Nearly Informal Carers and Families? In: Round J, editor. Care at the Finish of Life: An Economic Perspective. Great britain: Springer; 2016. p. 167–76.

   Chapter  Google Scholar

5. Gomes B, Cohen J, Deliens L, Higginson IJ. International trends in circumstances of death and dying amongst older people. Pp 3–18. In Living with Ageing and Dying: Palliative and Cease of Life Care for Older People. Pp170–180. Eds Gott & Ingleton, Oxford Academy Press, Oxford 2011.

6. Robinson J, Gott Grand, Gardiner C, et al. The 'problematisation' of palliative care in hospital: an exploratory review of international palliative care policy in five countries. BMC Palliat Care. 2016;xv:64.

   PubMed  PubMed Central  Article  Google Scholar

7. Gott Chiliad, Gardiner C, Allen R, et al. No matter what the toll: a qualitative report of the financial costs faced by family and whānau caregivers within a palliative intendance context. Palliat Med. 2015;29(6):518–28.

   PubMed  PubMed Central  Article  Google Scholar

8. Gott, M., & Robinson, J. (2018). Are we getting it wrong? Perspectives on the future of palliative care in hospitals. Palliative Medicine. https://doi.org/10.1177/0269216318809539.

9. Yu M, Guerriere DN, Coyte PC. Societal costs of home and hospital end-of-life care for palliative care patients in Ontario, Canada. Wellness Soc Care Commun. 2015;23(6):605–18.

   Article  Google Scholar

10. Eurobarometer. Special Eurobarometer 378—active ageing. Brussels: European Commission; 2012.

    Google Scholar

11. Ahmed Due north, Bestall JE, Ahmedzai SH, Payne SA, Clark D, Noble B. Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social intendance professionals. Palliat Med. 2004;eighteen(6):525–42.

    CAS  PubMed  Article  Google Scholar

12. Stajduhar KI, Mollison A, Giesbrecht M, McNeil R, Pauly B, Reimer-Kirkham S, et al. "Just likewise busy living in the moment and surviving": barriers to accessing health care for structurally vulnerable populations at stop-of-life. BMC Palliative Care. 2019;18(1):eleven.

    CAS  PubMed  PubMed Central  Article  Google Scholar

13. Sheridan A, Coughlan B, Frazer Chiliad, Walsh S, Bergin JA, Crawley Fifty, Kemple M, O'Toole S. The Palliative Care Needs of People with Serious Mental Illness in Republic of ireland. 2017. http://www.professionalpalliativehub.com/sites/default/files/Paliative%20Care%20need%20of%20People%20with%20SMI%20June%2015%202017%20Report%20Draft.pdf. Accessed 17 December 2019.

14. The Lancet. A call for equity in the delivery of Uk palliative care. Lancet. 2015;385(9977):1478.

15. Giesbrecht M, Crooks VA, Williams A. et al. Critically examining diverseness in end-of-life family caregiving: implications for equitable caregiver support and Canada's Compassionate Care Do good. Int J Equity Health. 2012;eleven:65. https://doi.org/10.1186/1475-9276-11-65.

    PubMed  PubMed Primal  Article  Google Scholar

16. Gardiner C, Brereton L, Frey R, et al. Exploring the financial impact of caring for family unit members receiving palliative and end of life care: a systematic review of the literature. Palliat Med. 2014;28(5):375–90.

    PubMed  Article  Google Scholar

17. Dumont Southward, Jacobs P, Turcotte 5, Anderson D, Harel F. The trajectory of palliative care costs over the last 5 months of life: a Canadian longitudinal study. Palliat Med. 2010;24(6):630–40.

    PubMed  Commodity  Google Scholar

18. Brick A, Smith S, Normand C, et al. Costs of formal and informal care in the final year of life for patients in receipt of specialist palliative care. Palliat Med. 2017;31(4):356–68.

    PubMed  Article  Google Scholar

19. Haltia O, Färkkilä Due north, Roine RP, et al. The indirect costs of palliative care in stop-stage cancer: a real-life longitudinal register- and questionnaire-based study. Palliat Med. 2018;32(ii):493–ix.

    PubMed  Article  Google Scholar

20. Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, Engineering, and Medicine; Schulz R, Eden J, editors. Families Caring for an Aging America. Washington (DC): National Academies Press (US); 2016 Nov 8. 4, Economic Impact of Family Caregiving. Available from: https://www.ncbi.nlm.nih.gov/books/NBK396402/.

    Google Scholar

21. Rowland C, Hanratty B, Pilling 1000, van den Berg B, Grande Chiliad. The contributions of family intendance-givers at end of life: a national postal service-bereavement census survey of cancer carers' hours of care and expenditures. Palliat Med. 2017;31(4):346–55.

    PubMed  PubMed Central  Article  Google Scholar

22. Chai H, Guerriere DN, Zagorski B, Coyte PC. The magnitude, share and determinants of unpaid intendance costs for dwelling-based palliative care service provision in Toronto, Canada. Health Soc Intendance Commun. 2014;22(1):30–9.

    Article  Google Scholar

23. Burt J, Raine R. The consequence of age on referral to and use of specialist palliative intendance services in adult cancer patients: a systematic review. Age Ageing. 2006;35(5):469–76.

    PubMed  Article  Google Scholar

24. Burt J. Dorsum to nuts: researching equity in palliative care. Palliat Med. 2012;26(one):5–vi.

    PubMed  Article  Google Scholar

25. Dalkin SM, Lhussier K, Philipson P, et al. Reducing inequalities in care for patients with non-malignant diseases: insights from a realist evaluation of an integrated palliative intendance pathway. Palliat Med. 2016;30:690–7.

    PubMed  Article  Google Scholar

26. Pivodic L, Van den Block L, Pardon M, Miccinesi Yard, Vega Alonso T, Boffin N, Donker GA, Cancian M, López-Maside A, Onwuteaka-Philipsen BD, Deliens L, EURO IMPACT. Burden on family carers and care-related financial strain at the stop of life: a cross-national population-based report. Eur J Pub Wellness. 2014;24(5):819–26.

    Article  Google Scholar

27. Gardiner C, Taylor B, Robinson J, Gott Chiliad. Comparison of financial support for family caregivers of people at the stop of life across six countries: a descriptive study. Palliat Med. 2019;33(9):1189–211.

    PubMed  Article  Google Scholar

28. McGarry K, Schoeni RF. Widow (er) poverty and out-of pocket medical expenditures near the end of life. J Gerontol B Psychol Sci Soc Sci. 2005;60:S160–8.

    PubMed  Commodity  Google Scholar

29. Eurostat. Earnings Statistics. Eurostat: Statistics Explained. 2016. https://ec.europa.eu/eurostat/statistics-explained/alphabetize.php/Earnings_statistics#Higher_level_of_education_yields_higher_earnings. Accessed 31 Mar 2020.

30. Lolich 50, Lynch K. No choice without care: problematizing pick at the stop of life, an Irish perspective. Irish J Anthropol. 2016;19(1):100–8.

    Google Scholar

31. Sharma Due north, Chakrabarti S, Grover S. Gender differences in caregiving among family - caregivers of people with mental illnesses. World J Psychiatry. 2016;6(1):7–17.

    PubMed  PubMed Central  Commodity  Google Scholar

32. Timonen V, Doyle M. Worlds apart? Public, private and not-profit sector providers of domiciliary Care for Older Persons in Ireland. J Crumbling Stud. 2007;21(3):255–65.

    Commodity  Google Scholar

33. Swinkels J, Tilburg Television, Verbakel Eastward. & Broese van Groenou, M. explaining the gender gap in the caregiving brunt of partner caregivers. J Gerontol Series B. 2017;74(2):309–17.

    Google Scholar

34. Walby, S., & Olsen, W. The bear upon of women'south position in the labour market on pay and implications for productivity. 2002. https://www.lancaster.ac.uk/fass/resources/sociology-online-papers/papers/walby-weupayandproductivity.pdf. Accessed 15 Jan 2020.

35. Ivancheva Thousand, Lynch K, Keating K. Precarity, gender and care in the neoliberal university. Gender Work Organ. 2019;26(iv):448–62.

    Article  Google Scholar

36. Tilden VP. Out-of-hospital decease: advance care planning, decedent symptoms, and caregiver brunt. J Am Geriatr Soc. 2004;52(4):532–ix.

    PubMed  Article  Google Scholar

37. Hanratty B, The netherlands P, Jacoby A, Whitehead Thou. Financial stress and strain associated with last cancer –a review of the evidence. Palliat Med. 2007;21(7):595–607.

    PubMed  Article  Google Scholar

38. Carmichael F, Hulme C, Sheppard S, Connell 1000. Piece of work-life imbalance: informal care and paid employment. Feminist Econ. 2008;14(ii):three–35.

    Commodity  Google Scholar

39. Anthias F. Hierarchies of social location, class and intersectionality: towards a translocational frame. Int Sociol. 2012;28(one):121–38.

    Article  Google Scholar

40. Davies JM, Sleeman KE, Leniz J, Wilson R, Higginson IJ, et al. Socioeconomic position and employ of healthcare in the last year of life: a systematic review and meta-assay. PLoS Med. 2019;xvi(7):e1002878.

    PubMed  PubMed Key  Article  Google Scholar

41. Gardiner C, Cobb M, Gott M, Ingleton C. Barriers to providing palliative care for older people in astute hospitals. Historic period Ageing. 2011;40(2):233–eight.

    PubMed  Article  Google Scholar

42. Intendance Quality Commission. A Different Ending. Addressing inequalities in end of life care. 2016. https://world wide web.cqc.org.uk/sites/default/files/20160505%20CQC_EOLC_OVERVIEW_FINAL_3.pdf. Accessed fifteen Jan 2020.

43. Ambitions for Palliative and End of Life Intendance. Dying Well in Custody Charter. A national framework for local action. 2018. http://endoflifecareambitions.org.uk/resource/dying-well-custody-lease/. Accessed 22 Oct 2019.

44. NHS England 2017. Delivering high quality cease of life intendance for people who have a learning inability.

45. National Constitute for Health & Care Excellence. Guide to the methods of technology appraisal 2013. London: Nice; 2013.

    Google Scholar

46. Perspective [online]. York; York Wellness Economic science Consortium; 2016. https://yhec.co.uk/glossary/perspective/. Accessed 10 Feb 2020.

47. Asaria Thou, Griffin S, Cookson R. Distributional cost-effectiveness analysis: a tutorial. Med Decis Mak. 2016;36(i):viii–xix.

    Article  Google Scholar

48. Gardiner C, Ingleton C, Ryan T, Ward S, Gott M. What cost components are relevant for economic evaluations of palliative care, and what approaches are used to measure out these costs? A systematic review. Palliat Med. 2017;31(4):323–37.

    PubMed  Commodity  Google Scholar

49. Claxton M, Walker S, Palmer S, Sculpher M. Appropriate Perspectives for Health Care Decisions. Centre for Health Economics, University of York. 2010. https://www.york.air-conditioning.united kingdom of great britain and northern ireland/che/pdf/rp54.pdf. Accessed 10 Feb xx.

50. Carias C, Chesson HW, Grosse SD, et al. Recommendations of the 2d panel on cost effectiveness in wellness and medicine: a reference, non a rule book. Am J Prev Med. 2018;54(4):600–2.

    PubMed  PubMed Central  Article  Google Scholar

51. Gardiner C, Allen R, Moeke-Maxwell T, et al. Methodological considerations for researching the financial costs of family caregiving within a palliative care context. BMJ Support Palliat Care. 2016;6(4):445–51.

    PubMed  Article  Google Scholar

52. Gardiner C, McDermott C, Hulme C. Costs of family caregiving in palliative intendance (COFAC): development and piloting of a new survey tool. BMJ Supp Pall Intendance. 2019;ix(three):300–half dozen.

    Article  Google Scholar

53. Empathetic Communities U.k.. Principles of compassionate communities. https://world wide web.compassionate-communitiesuk.co.uk/. Accessed 10 February 2020.

54. Ewing G, Grande One thousand. Evolution of a Carer support needs assessment tool (CSNAT) for end-of-life care do at domicile: a qualitative report. Palliative Med. 2013;27(iii):244–56.

    Commodity  Google Scholar

Download references

Acknowledgements

Not applicable.

Funding

This work was funded past the World Universities Network (WUN).

Author information

Affiliations

1. Wellness Sciences School, Sectionalization of Nursing & Midwifery, The Academy of Sheffield, Barber Business firm Annexe, 3a Clarkehouse Road, Sheffield, S10 2LA, UK

   Clare Gardiner

2. School of Nursing, University of Auckland, Auckland, New Zealand

   Jackie Robinson, Kristy Kang & Merryn Gott

3. School of Nursing, Midwifery and Wellness Systems, University College Dublin, Dublin, Ireland

   Michael Connolly

4. Establish of Wellness Enquiry, University of Exeter Medical School, Exeter, Great britain

   Claire Hulme

5. School of Wellness Sciences, The University of Manchester, Manchester, UK

   Christine Rowland

6. Institute of Higher Education and Inquiry in Healthcare – IUFRS, University of Lausanne, Lausanne University Infirmary, Lausanne, Switzerland

   Phil Larkin

7. Academic Unit of Wellness Economics, University of Leeds, Leeds, UK

   David Meads

8. Department of Public Health and Primary Care, University of Cambridge, Cambridge, United kingdom

   Tessa Morgan

Contributions

CG wrote a starting time draft, with contributions from MG and JR. Subsequently MC, CH, KK, CR, PL, DM, TM contributed to further drafts and read and approved the final manuscript. The authors read and approved the final manuscript.

Corresponding author

Correspondence to Clare Gardiner.

Ideals declarations

Ethics blessing and consent to participate

none required as this paper merely reports on published literature.

Consent for publication

None required.

Competing interests

Clare Gardiner and Michael Connolly are Associate Editors of BMC Palliative Intendance, only had no interest in the handling of this manuscript. All other authors declare that they have no competing interests.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Open up Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits utilize, sharing, accommodation, distribution and reproduction in whatsoever medium or format, as long as you give advisable credit to the original author(s) and the source, provide a link to the Artistic Commons licence, and indicate if changes were made. The images or other third political party material in this commodity are included in the article'south Creative Commons licence, unless indicated otherwise in a credit line to the textile. If textile is not included in the article's Creative Eatables licence and your intended utilize is non permitted by statutory regulation or exceeds the permitted use, you volition demand to obtain permission direct from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Artistic Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/one.0/) applies to the information fabricated available in this article, unless otherwise stated in a credit line to the data.

Reprints and Permissions

About this article

Cite this article

Gardiner, C., Robinson, J., Connolly, M. et al. Equity and the financial costs of informal caregiving in palliative intendance: a critical argue. BMC Palliat Intendance 19, 71 (2020). https://doi.org/10.1186/s12904-020-00577-2

Download commendation

• Received: xix Feb 2020

• Accustomed: 14 May 2020

• Published: xix May 2020

• DOI : https://doi.org/10.1186/s12904-020-00577-2

Keywords

• Palliative care
• Finish of life care
• Financial
• Economical
• Costs
• Family carer
• Informal carer
• Caregiver
• Equity
• Inequity

higueraouthad.blogspot.com

Source: https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-020-00577-2

Share this post