Title: Gender and Family Caregiving at the End-of-Life in the Context of Old Age: A
Authors: Tessa Morgan BA, Lisa Ann Williams PhD, Gabriella Trussardi PhD, Merryn Gott
Institutional Affiliation: School of Nursing, Faculty of Medical and Health Sciences, The
University of Auckland, Auckland, New Zealand.
Each author’s current appointment and work address:
Tessa Morgan: Research Assistant, School of Nursing, The University of Auckland
Lisa Ann Williams: Research Fellow, School of Nursing, The University of Auckland
Gabriella Trussardi: Research Assistant, School of Nursing, The University of Auckland
Merryn Gott: Professor of Health Sciences, School of Nursing, The University of Auckland
School of Nursing
Faculty of Medical and Health Sciences
The University of Auckland
Private Bag 92019
Auckland, New Zealand
Contact details of corresponding author:
School of Nursing
Faculty of Medical and Health Sciences
The University of Auckland
Private Bag 92019
Auckland, New Zealand
Background: As societies age and governments attempt to manage within constrained health
budgets by moving care into community settings, women will be called upon to provide more
palliative care in old age. However, little is known about gendered disparities for carers of
people over the age of 65.
Aim: To identify and synthesise the empirical literature between 1994-2014 that focuses on
gender and family caregiving for people over 65 with a life limiting illness.
Design: Systematic review of qualitative and quantitative studies conducted in accordance
with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA)
guidelines. Supplemental review using a novel feminist quality appraisal framework.
Data sources: Search of MEDLINE, Cinahl, PsycINFO, Sociological Abstracts and Gender
Studies to find empirical studies on gender and family caregiving at end-of-life in the context
of old age.
Results: Of 19 studies identified, 9 presented thorough gender analyses. Gender themes
included why people care, how they care, and the consequences of providing care. Women
carers experienced a greater degree of mental and physical strain than their male counterparts.
This was linked to societal expectation that women should provide a greater degree of care at
the end-of-life for family members.
Conclusions: Palliative family caregiving for older adults is gendered. Gender affects why
people care and the consequences of providing care. Palliative care literature needs to
incorporate a greater gender focus for future research and policy-makers need to be aware of
the gendered ramifications of providing more palliative care in the community.
Palliative care, end-of-life care, family caregiving, informal care, gender, older adults
What is already known about the topic?
•To date, palliative care research in the context of old age has rarely considered the
gendered impact of such care despite the wide acknowledgement that women provide
the majority of family caregiving at end of life.
•Women all over the world will have to shoulder significantly more caregiving burden
as a direct result of their governments’ attempts to push palliative care into the
•Providing care to a family member affects women’s mental and physical health more
negatively than it does men.
What this paper adds?
•Evidence that gender significantly impacts the provision of palliative care by family
members both in terms of the reasons to provide care and the outcomes of providing
•The review identified 19 studies relating to gender and family caregiving in the
context of palliative care; 9 presented thorough gender analyses.
•Our novel feminist quality appraisal framework highlighted a significant variance in
the nature of gender analyses used.
Implications for practice, theory or policy
•Further research is required to explore the complex construction of gender and family
caregiving in the end-of-life context which is currently limited.
•This review has outlined the importance of health professionals developing gender
sensitive strategies to assist family caregivers at this time of intense need.
•Policy-makers all over the world need to be aware of the gendered ramifications of
expanding more palliative care into the community and how this will
disproportionately affect women.
Older women comprise a significant proportion of the world's population, and this trend is
only predicted to increase.1 The United Nations has reported that the number of women aged
60 and over will increase from about 336 million in 2000 to just over 1 billion in 2050.2 By
2050 there will be “189 women for every 100 men” living over 80 years of age.2 p. 3As
societies age, there will be a greater demand for palliative care in the context of old age, as
well as an ageing pool of family carers.3 This burden of care will fall disproportionately on
women, first spouses, but also daughters and daughters-in-law, who have been traditionally
relied on “for management of health, and acute and chronic illness” in the home.4-7 These
societal expectations have real world implications, for even women aged 80 and over provide
a significant portion of unpaid family caregiving.8
Another factor exacerbating the expectation of women to provide at-home care stems from
Western governments’ policy decisions to shift the onus of care away from the often publicly-
funded formal care system.9-12 This re-domestication of care presupposes the contribution of
family members – especially women – to make home care possible. 9-13 These responsibilities
rest on top of their pre-existing caring role for which they receive none of the recompense
guaranteed in public formal work.10 Moreover, a greater proportion of women will continue
to die inside the purview of the formal system, and indeed expect to, because they are less
likely to receive informal care themselves due both to their reluctance to be a burden on their
family members and in part because they tend to outlive their spouses if in heterosexual
Furthermore, the existing literature on family caregiving shows that the experience negatively
affects women more than men. Women are at a greater risk of stress, anxiety and depression
than men who provide care and non-carers, as well as self-reporting more unmet psychosocial
needs as a result of providing higher and more intense levels of care.3, 16 Women carers also
report lower levels of subjective well-being and physical health and often suffer from higher
rates of physical and/or psychological co-occurring aliments than men.2, 17, 18 Compounding
this, women providing family caregiving are more likely to live in poverty.2, 8, 18
Taken together, these factors indicate a significant gender inequality at the heart of palliative
care. As such, a systematic review of how gender is attended to in the palliative care
literature, especially in light of the fact that older female spouses are increasingly responsible
for their partners’ care at a time of intense need, seems overdue.18 To our knowledge, no
systematic review has been conducted that considers the use of gender in informal palliative
care in the context of old age; therefore it is our aim to do so by looking at the palliative care
literature from the last 20 years. Informed by our own feminist commitment to the equal
treatment of all genders, we have employed a feminist analysis to assess the literature. We
understand a feminist analysis to be centred on questions about the construction of power and
gender in any given society as well as a commitment to discover ways to improve women’s
position in society.19 In particular, such an analysis will help highlight the gendered power
relations that underpin the uneven outcomes implicit in the provision of care.
1. To identify and synthesise the empirical literature from the past 20 years that
examines the relationship between gender and family caregiving at end-of-life of
patients over 65 in order to explore how gender as a social construction impacts on
For the purpose of this review ‘family caregiving’ will be understood as care provided at
home by an “informal carer” who is a “family member, friend, or fictive kin who provides
some form of care to an older adult with whom they have a relationship”.20 p. 1008 Gender is to
be understood as “the social, cultural and symbolic construction of femininity and
masculinity in any given society”.19 p.242 Moreover, our focus is on palliative care in the
context of old age and as such, the inclusion criteria specified that care recipients must be
over the age of 65.
We searched five electronic databases (MEDLINE, Cinahl, PsycINFO, Sociological
Abstracts and Gender Studies) for articles published in the last 20 years (Jan 1994 to Nov
2014) using a search strategy devised in collaboration with a specialist subject librarian.
Search terms were developed in relation to our key search areas and were subsequently
refined and in certain cases expanded following a preliminary search (Figure 1). Notably, we
decided to exclude ‘female’ and ‘male’ from the search terms because the usage was focused
specifically on the biological sex rather than gender, and inflated the search unnecessarily.
The final criteria comprised peer-reviewed, English-language articles on palliative care in the
context of old age (over 65) and informal care with a prime focus on gender (Table 1).
Over a period from November 17th 2014 to December 22nd 2015 Tessa Morgan (TM)
independently screened titles and abstracts of all articles to identify those which met the
study’s inclusion criteria. All articles that passed into the abstract stage were compared
against a data extraction template – a modified version of Hawker et al. – providing a short-
hand reference to the inclusion criteria.21 Those that the first reviewer was unsure about were
subsequently reviewed by Lisa Williams (LW). The articles included from the abstract stage
were then read in full and their reference lists searched. Articles found in this way were also
included if they met the criteria. The articles from this stage that remained indeterminate were
also reviewed by Merryn Gott (MG) in consultation with TM and LW.
As the studies incorporated in this review contained methodologies representing different
paradigms, we employed a descriptive thematic analysis to review and synthesise the
research. This method allowed for a structured way to identify themes across different
literature, while ensuring flexibility to develop themes in a data-driven manner.22, 23 We could
not find a suitable quality appraisal tool that would appraise gender and therefore we derived
our own feminist quality appraisal framework which we subsequently compared our included
articles against (Table 2). The purpose of the framework was to assess the rigour of the
gendered analysis employed in the articles included in the review. The framework assessed
how gender was used in data collection (participants responses); data analysis (gender used as
socially constructed category); and discussion (societal expectations, intersecting disparities
and effective ways forward). TM judged whether studies should be considered thorough,
moderate or cursory, in relation to the degree to which each study fit the five criteria included
the framework. TM then consulted with LW and MG until consensus was reached as to the
feminist quality of each study.
Search results are summarised in the adapted Preferred Reporting Items for Systematic
Reviews and Meta-Analyses (PRISMA) flowchart (Figure 2). A total of 13 studies met our
inclusion criteria from our database search with a further six included from the hand-search
process. Of these 19 studies, seven were quantitative, seven were qualitative, one was a
literature review, and four used mixed methods. The quality of the gendered analysis varied
greatly, with nine studies (seven qualitative, one quantitative and one mixed methods)
presenting a thorough feminist analysis, according to our framework. Simply having gender
as a main focus did not ensure that the gendered nature of disparate power relations and their
effects were taken into account. By the same token, a gender focus did not equate to a
feminist account which requires a greater focus on achieving gender equality within the
methods of the study and outcomes of research. Three key themes were identified pertaining
to gender and will be discussed in the following section: why people care, how they care, and
the consequences of providing care.
Why women and men care
Feelings of responsibility and reciprocity for family members were repeatedly cited in the
literature as the underpinning motivation for providing care.24-27 Nevertheless, the literature
indicated that this duty fell considerably more on women than men in the Western context,
with the popular idea of a ‘dutiful’ daughter or ‘nurturing’ wife having a palpable effect on
the provision of care.4 This difference is apparent where women in general expect to live out
their deep old age in formal care and increasingly do, even as men continue to expect to be
cared for by their spouses.9 Female longevity certainly affects these assessments, but they are
also evidently influenced by normative ideas of gender roles.9, 28-30 Other interceding factors
include the marital status of the carer, for as Campbell found, never-married sons provided
more care than married sons.26 Nonetheless, Campbell is sceptical of ‘externalist’ reasons, put
simply, that patriarchy can explain why caregivers are predominantly female, because she
believes this ascribes a false passivity to the actors involved in day-to-day caring.26 The
importance of context is particularly apparent when looking at the non-Western setting of
Tibet and China. Two studies focusing respectively on these countries demonstrated how
expectations of care fell on the eldest son and his wife, whereas married daughters were
expected to provide no care for their birth families.31, 32 Differences in the construction of
gender across countries and cultures reinforced the power of normative ideals of gender on
how people conducted themselves and explained their actions and behaviour.24
The performance of care
Gendered expectations shaped the nature of care provided. All studies showed that women
were more likely to be carers than men. Where men did identify as carers, on average, they
provided less time caring than women.9, 33 These studies also revealed that women and men
tended to provide different types of care. Whereas men were more likely to provide
instrumental support such as mobility-related tasks, women were twice as likely to provide
assistance in toiletry-related tasks and other more intimate aspects of personal care.9, 28, 34 Two
studies found that women provided more intensive instrumental care that involved more
heavy lifting than men.34, 35 Linked to this was the way in which women and men perceived
their caring roles differently. Husbands providing palliative care often saw their role in terms
of a job, applying a managerial order to their caring, while wives tended to see themselves
more as nurturers.36 As a consequence, women were less inclined than men to rely on formal
care services when providing care for a family member, which authors linked with women’s
expectations of taking on a higher level of care.28 Nevertheless, other studies revealed that not
all carers’ experiences fit into this neat dichotomy, as in reality there was a significant
blurring between traditionally ascribed roles.24, 26, 36 Within this intricate web of identities, not
everyone accepted the identity of carer, opting to see themselves as fulfilling their duties as a
Other studies explored how palliative care intersected with additional significant caring roles.
At the same time as undertaking palliative caring women fulfilled other caring roles, for
example, as mothers, spouses and friends. 4, 28, 34, 37 Unsurprisingly, women struggled when
caregiving conflicted with competing demands.4, 38 Compounding such demands, women –
especially in the case of daughters – felt adversely affected when the care expected from them
was unequal to that of their brothers.4 Furthermore, caring for a parent at the end of life had
repercussions on carers’ other relationships. Suitor and Pillemer found that husbands of
women caring for their parents sometimes withheld emotional support when they perceived
their wives were neglecting them.39
Physical and mental health of the carer
Gender was most prominently discussed in relation to the different experiences of carers of
mental and physical health impacts. First, with regard to mental health, all studies found that
female carers faced a greater incidence of mental strain than both male carers and non-
carers.33, 38, 40 One study found that women suppressed their emotions to “maintain a pleasant
and perceived socially acceptable disposition”.30 p. 821 Mental strain was also linked to
depression, which women suffered disproportionately.28 Two studies argued that these
negative mental health impacts were not shared equally between all women, but rather that in
terms of self-esteem wives are far more vulnerable than daughters.33, 38 Other scholars, who
focused on men as carers, asserted that men also experienced negative emotions as a result of
caregiving, but had a tendency to suppress their emotions, which resulted in the literature
misrepresenting their experiences.24, 26, 29, 35, 41 Moreover, some authors identified gender as just
one factor mediating the impact on caring as the health of the care recipient and financial
security also contributed.37, 41
A gender variation was also evident in physical health of carers. A significant proportion of
the literature reported that women sacrificed their own health care issues in order to provide
care for their spouse which resulted in the exacerbation of their co-morbidities during the care
process.30 This is important when it is appreciated that informal palliative carers are most
likely to be women spouses, and that women are more likely to suffer from co-morbidities
than men.30 Nevertheless, the literature also emphasised that there were positive aspects
stemming from the palliative care experience, including personal development and the
satisfaction of providing a ‘good’ death for one’s family member.26, 33, 41
This is the first review to systematically collate and synthesise the international empirical
literature relating to gender and family caregiving at end of life of patients over 65. Adding to
its significance is the timely nature of this research. Increasingly the relevance of gender to
health in old age is being investigated, as evidenced in the social and feminist gerontology
literature. 42 Moreover the way gender affects health is also on the rise as a topic of discussion
in the popular press.43
This review has highlighted several significant implications for future research. First, the
literature has revealed just how important gender is to the experience of end-of-life
caregiving across a range of subjects: why people accept the role, the nature of the care they
provide, and the health-related outcomes for carers. Indeed, if we are to understand palliative
care as “an approach that improves the quality of life of patients and their families”, at a time
of intense need, then gender must be included as a category of analysis when conducting
further research in this area.44 Two recommendations arising from this review therefore are:
the need to apply a thorough gender analysis to new original research in palliative care and
the need for further research that reveals the degree to which gender intersects with other
identity-defining characteristics, especially ethnicity, which we have tentatively identified as
important to influencing the gendered provision of palliative care.
Additionally, this review has demonstrated the importance of understanding gender as a part
of a body of normative ideas that exist within specific contexts. Studies within this review –
especially those that met the standards of the feminist quality appraisal tool – focused on how
ideas of gender materialised within the particular context they studied, delineated largely by
national boundaries.27, 29-31, 37 A few studies also looked at how ideas of gender change over
generations and between ethnic groups within particular societies, which indicates that
constructions of gender are neither static nor universal. 24, 27, 30, 32, 36 In line with this approach,
we argue that future research should take into account that gender is a malleable product of
particular socio-cultural contexts and influenced heavily by the distribution of power within
societies. The best way to enable this process is to situate caregiving in the paradigm of
femininity, not simply as a commonplace women’s role, which surprisingly only two studies
in this review did and only in relation to their masculine subjects.29, 36 Furthermore, other
identity-shaping factors, such as age, ethnicity and class, which can modify normative
conceptions of gender, could also be assessed in greater depth.33
Moreover, when conducting this search we found two reoccurring issues in the literature
concerning the usage of gender. First, there was a tendency for studies to conflate discussions
of sex with gender, which Calasanti suggested was a wider problem in the biomedical
literature often stemming from confusion around the distinction of the two.29 We posit that
conflating the two concepts is particularly important to avoid when researching family
caregiving as this confusion reinforces notions of the naturalness of women caregiving,
which is itself a social construction. Second, we found that researchers often conflated gender
with women and thus never explicitly discussed gender despite its relevance to their studies.
At the other end of the scale, one study held that gender was only relevant when viewed
comparatively between men and women.28 As our systematic review reveals, however, there
is a growing number of exploratory studies on men as carers which effectively employ gender
analyses to interrogate different performances of masculinity without needing to include
women in their studies.29, 36, 41 Therefore further studies should embrace the flexible nature of
gender analyses and avoid falling back on outdated assumptions of gender research.42
In practice the assumptions underpinning expectations for women to provide family
caregiving need to be investigated and challenged. This review has shown how caregiving
responsibilities are in the main shouldered by women. Caregiving responsibilities are also
overwhelmingly invisible in the public domain due to the widespread perception that they are
a family rather than a policy concern.9, 29 In this way the palliative care process can be seen to
reflect dominant cultural expectations which relegate women to the private sphere and
devalue their labour – a process which is exacerbated for older adults because of
undercurrents of ageism in society.45 While many women, and indeed some men, take on their
caring roles willingly – motivated by their filial duty to their loved one – many carers still
have negative experiences providing care. The high incidence of mental and physical strain
experienced by family caregivers, particularly older women spousal carers, attests to the
negative side of providing palliative care. Moreover, female family caregivers are more likely
to have to sustain these negative effects and indeed do, because the moral imperative
surrounding family caregiving at end of life falls disproportionately on women; thereby re-
inscribing their disadvantage in society. By challenging the ideal of family caregiving as a
feminine necessity in the west, and therefore making the choice to be a family caregiver more
genuinely autonomous, we may be able to protect the health of family caregivers, as well as
to ensure the efficacy of the care provided.
Studies have argued that one way to achieve this moral reconceptualising is to support more
men into caring roles. Studies have argued that in doing so we must take into account the
ways that men develop caring strategies are rooted in their “sense of selves as men”, as well
as valuing their work through the type of praise which they would have received in their
employment.24, 26, 29, 36, 41 Although these suggestions have merit, taking a “Mr. Wonderful”
attitude – a term used by Campbell – esteeming men, while not extending such praise to
women, reinforces this devaluing of care work and re-inscribes gendered norms framing
women as natural carers.26 Instead, all carers ought to be valued and their roles demystified in
order to move toward a situation where women and men feel comfortable to share their
experiences and indeed the workload, so as to improve their caregiving experiences. 46
This review has outlined the importance of health professionals developing gender sensitive
strategies. First, health professionals need to be especially aware of the mental health
disparities of women and develop appropriate strategies accordingly to promote self-efficacy
and provide encouragement for women carers.4, 28, 34 Professionals should also be mindful of
the masculine gender trait that encourages men to withhold emotion and check-in with them
about their wants and needs. The second related point pertains to the need for professional
training for family members who wish to provide care, as well as the need for in-home help
that will enable carers to have time-off for themselves.9, 34, 38, 47 Combined, these strategies
would help dissipate expectations that women should shoulder most, if not all, caregiving
responsibilities. 16, 28 Such strategies also represent direct ways policy-makers can ameliorate
the gendered inequalities inherent in positioning palliative care in the community.
The feminist appraisal template focused specifically on the quality of gender analysis evident
in the research included in the study. Consequently, other issues related to methodological
rigour more typically addressed in conventional systematic reviews have not been examined
in as great detail. Second, while electronic search, retrieval and review strategies were used,
the search is subject to some limitations. Databases were limited to English, and due to a
limitation of resources, a search of the ‘grey literature’ was not conducted. As a result, some
studies may have been missed.
Gender has wide-reaching effects on the experience of carers looking after a family member
who is both in old age and at the end of life. Gender affects why people care, how they care,
and the consequences of providing care. Fundamental to these assessments was the way care
was commonly perceived as a natural element of femininity, rendering care invisible (and
devalued) and yet a cornerstone of the wider health system. In sum, this review highlights the
urgent need for more gender analysis to fill this significant gap in palliative care literature.
There is also a need to provide gender sensitive support for family caregivers in order to
rectify the gender inequalities perpetuated by the palliative care process.
Conflict of Interest Statement
University of Auckland
Contact corresponding author Tessa Morgan for more information on how to access and use
the forthcoming feminist quality appraisal template framework.
2. (MH “Terminally Ill Patients” or MH “Terminal Care”) or “terminally ill”
3. Terminal ill*
4. End of life
5. Last year of life
6. Home based
7. (MH “Home Nursing”)
8. Informal care*
9. Lay care*
10. Informal support*
11. Personal assistance
12. (“spou*” OR “famil*” OR “home”) AND (“care*” OR “support*” OR “assist*”)
13. (MH “Caregiver Support”)
19. Feminist gerontology
22. Gender role*
23. Gender norm*
Informal care terms
24. “hegemon*” OR “patriarch*”
25. “social* construct*”
26. (MH “Sex Role”) OR “sex role”
27. (MH “Gender Bias”) OR “gender bias*”
31. (MH “Aged”) OR “aged”
32. (MH “Death”) OR “death”
Written in English language Written in languages other than English
Articles focusing on gender and family-
Any study that did not have a key focus on
gender, including studies which only referred
to biological sex. Studies that focused on
caregiving for someone other than a relative.
Palliative or end-of-life care provided for
someone aged >65 years.
Palliative care in ICU, hospital or hospice
and/or by someone who is not a family
Palliative or end-of-life care in the context of
old age (over 65)
Not focusing on palliative or end-of-life care
for a person over 65
Articles published between January 1994 and
Articles before and after this time period
Table 1: Inclusion and exclusion criteria for systematic search
Total number of titles identified
through searches = 932
Excluded = 50
Excluded as full text unavailable =
Excluded as not meeting criteria =
Articles included in review= 19
Quantitative studies = 7
Qualitative studies = 7
Mixed methods studies = 4
Literature reviews = 1
Total number of full text articles
reviewed = 69
Excluded on basis of
Total number of titles minus
duplicates (932- 234) = 698
Full text articles reviewed = 40
Figure 2. Adapted PRISMA flow diagram of studies
PRIMSA: Preferred Reporting Items for Systematic Reviews and Meta-Analyses
1. World Health Organisation. Women and Health: Today's Evidence, Tomorrow's
Agenda. Report. Geneva, 2009.
2. World Health Organisation. Women, Ageing and Health: A Framework for Action. A
Focus on Gender. Report, Geneva, 2007.
3. Ventura, A, Burney S, Brooker J, et al. Home-based palliative care: A systematic
literature review of the self-reported unmet needs of patients and carers. Palliat Med. 2014;
4. Read T and Wuest J. Daughters caring for dying parents: A process of relinquishing.
Qual Health Res. 2007; 17: 932-44.
5. Brody EM. Women in the middle: Their parent-care years. New York: Springer, 1990.
6. Parsons K. The Male Experience of Caregiving for a Family Member with Alzheimer's
Disease. Qual Health Res. 1997; 7: 391-407.
7. Stobert S and Cranswick K. Looking after seniors: Who does what for whom? Can
Soc Trends. 2004: 2-6.
Eligibility New texts identified through
reference lists = 29
8. Zimmerman MK and Legerski E. The Role of Governments in Health Care:
Implications for Women's Health and Access to Care. Women's Health Issues. 2010; 20: 87-
9. Brazil K, Thabane L, Foster G, et al. Gender differences among Canadian spousal
caregivers at the end of life. Health Soc Care Community. 2009; 17: 159-66.
10. Aronson J. Women's Sense of Responsibility for the Care of Old People: "But Who
Else is Going to Do It?". Gend Soc. 1992; 6: 8-29.
11. McNamara B and Rosenwax L. Which carers of family members at the end of life
need more support from health services and why? Soc Sci Med. 2010; 70: 1035-41.
12. Exley C and Allen D. A critical examination of home care: End of life care as an
illustrative case. Social Science & Medicine. 2007; 65: 2317-27.
13. Schmid T, Brandt M and Haberkern K. Gendered support to older parents: do welfare
states matter? European Journal of Ageing. 2012; 9: 39-50.
14. Wachterman MW and Sommers BD. The Impact of Gender and Marital Status on
End-of-Life Care: Evidence from the National Mortality Follow-Back Survey. J Palliat Med.
2006; 9: 343-52.
15. Grande GE, Addington-Hall JM and Todd CJ. Place of death and access to home
care services: are certain patient groups at a disadvantage? Soc Sci Med. 1998; 47: 565-79.
16. Yee JL and Schulz R. Gender Differences in Psychiatric Morbidity Among Family
Caregivers: A Review and Analysis. Gerontologist. 2000; 40: 147-64.
17. Pinquart M and Sörensen S. Gender Differences in Caregiver Stressors, Social
Resources, and Health: An Updated Meta-Analysis. J Gerontol B Psychol Sci Soc Sci. 2006;
18. Bamford S and Walker T. Women and dementia – not forgotten. Maturitas. 2012; 73:
19. Hammarström A. Why feminism in public health? Scand J Public Health. 1999; 27:
20. Schulz R. Research Priorities in Geriatric Palliative Care: Informal Caregiving. J
Palliat Med. 2013; 16: 1008-12.
21. Hawker S, Payne S, Kerr C, et al. Appraising the Evidence: Reviewing Disparate
Data Systematically. Qualit Health Res. 2002; 12: 1284-99.
22. Dixon-Woods M, Agarwal S, Jones D, Young B and Sutton A. Synthesising qualitative
and quantitative evidence: a review of possible methods. Journal of Health Services
Research & Policy. 2005; 10: 45-53B.
23. Braun V and Clarke V. Using thematic analysis in psychology. Qualit Res Psychol.
2006; 3: 77-101.
24. Chattoo S and Ahmad WI. The moral economy of selfhood and caring: negotiating
boundaries of personal care as embodied moral practice. Sociol Health Illn. 2008; 30: 550-
25. Wenger GC. Childlessness at the end of life: evidence from rural Wales. Ageing
Society. 2009; 29: 1243-59.
26. Campbell LD. Sons Who Care: Examining the Experience and Meaning of Filial
Caregiving for Married and Never-Married Sons. Can J Aging. 2010; 29: 73-84.
27. Burns CM, LeBlanc TW, Abernethy A and Currow D. Young caregivers in the end-of-
life setting: A population-based profile of an emerging group. Journal of Palliative Medicine.
2010; 13: 1225-35.
28. Sugiura K, Ito M, Kutsumi M and Mikami H. Gender Differences in Spousal
Caregiving in Japan. J Gerontol B Psychol Sci Soc Sci. 2009.
29. Calasanti T and King N. Taking ‘Women's Work’ ‘Like a Man’: Husbands' Experiences
of Care Work. Gerontologist. 2007; 47: 516-27.
30. DiGiacomo M, Lewis J, Nolan MT, et al. Transitioning from caregiving to widowhood.
J Pain Symptom Manage. 2013; 46: 817-25.
31. Childs G, Goldstein MC and Wangdui P. Externally-Resident Daughters, Social
Capital, and Support for the Elderly in Rural Tibet. J Cross Cult Gerontol. 2011; 26: 1-22.
32. Zuo D, Li S, Mao W, et al. End-of-Life Family Caregiving for Older Parents in China’s
Rural Anhui Province. Can J Aging. 2014; 33: 448-61.
33. Chappell NL, Dujela C and Smith A. Caregiver Well-Being: Intersections of
Relationship and Gender. Res Aging. 2014.
34. Navaie-Waliser M, Spriggs A and Feldman PH. Informal Caregiving: Differential
Experiences by Gender. Med Care. 2002; 40: 1249-59.
35. Scott G, Whyler N and Grant G. A study of family carers of people with a life-
threatening illness 1: the carers' needs analysis. Int J Palliat Nurs. 2001; 7: 290-7.
36. Russell R. The Work of Elderly Men Caregivers: From Public Careers to an Unseen
World. Men and Masculinities. 2007; 9: 298-314.
37. Govina O, Vlachou E, Kavga-Paltoglou A, et al. Exploring the factors influencing time
and difficulty of tasks provided by family caregivers of patients with advanced cancer in
Greece. Health Sci J. 2014; 8: 438-51.
38. Mystakidou K, Parpa E, Panagiotou I, et al. Caregivers' anxiety and self-efficacy in
palliative care. Euro J Cancer Care. 2013; 22: 188-95.
39. Suitor JJ and Pillemer K. Family Caregiving and Marital Satisfaction: Findings from a
1-Year Panel Study of Women Caring for Parents with Dementia. J Marriage Fam. 1994; 56:
40. Lavela SL and Ather N. Psychological health in older adult spousal caregivers of
older adults. Chronic Illn. 2010; 6: 67-80.
41. Fromme EK, Drach LL, Tolle SW, et al. Men as caregivers at the end of life. J Palliat
Med. 2005; 8: 1167-75.
42. Calasanti T. Feminist gerontology and old men. J Gerontol B Psychol Sci Soc Sci.
2004; 59: S305-14.
43. Mckie R. Dementia hits women hardest. The Guardian (2015).
44. World Health Organisation. Palliative care is an essential part of cancer control,
http://www.who.int/cancer/palliative/definition/en/ (2009, accessed 6 January 2015).
45. Calasanti T. A feminist confronts ageism. J Aging Studies. 2008; 22: 152-7.
46. Celik H, Lagro-Janssen T, Widdershoven G, et al. Bringing gender sensitivity into
healthcare practice: A systematic review. Patient Educ Couns. 2011; 84: 143-9.
47. Cohen SR, Keats S, Cherba M, et al. OA8 Caring for the family caregiver: working
with volunteers to implement and improve a service to enable family caregivers to maintain
their own wellbeing. BMJ supportive & palliative care. 2015; 5: A3.