ArticlePDF AvailableLiterature Review

Abstract

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 caregivers of people over the age of 65 years. Aim: To identify and synthesise the empirical literature between 1994 and 2014 that focusses on gender and family caregiving for people over the age of 65 years 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 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 caregivers 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. Conclusion: 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.
Title Page
Title: Gender and Family Caregiving at the End-of-Life in the Context of Old Age: A
Systematic Review
Authors: Tessa Morgan BA, Lisa Ann Williams PhD, Gabriella Trussardi PhD, Merryn Gott
PhD
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
Address:
School of Nursing
Faculty of Medical and Health Sciences
The University of Auckland
Private Bag 92019
Auckland, New Zealand
Contact details of corresponding author:
Tessa Morgan
School of Nursing
Faculty of Medical and Health Sciences
The University of Auckland
Private Bag 92019
Auckland, New Zealand
E-mail: t.morgan@auckland.ac.nz
1
Abstract
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.
Keywords
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
community.
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
care.
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.
2
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.
Background
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
relationships.14, 15
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
3
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.
Aim
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
carers’ experiences.
Methods
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.
Data Search
4
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.
Data analysis
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
5
the framework. TM then consulted with LW and MG until consensus was reached as to the
feminist quality of each study.
Results
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
6
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
spouse.24
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
7
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
Discussion
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
8
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
9
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
10
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.
Limitations
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.
Conclusion
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
None.
Funding
11
University of Auckland
Supplementary Materials
Contact corresponding author Tessa Morgan for more information on how to access and use
the forthcoming feminist quality appraisal template framework.
Figure 1:
1. Palliative
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”)
14. Gender
15. Sex
16. Women
17. Men
18. Feminis*
19. Feminist gerontology
20. Feminine
21. Masculine
22. Gender role*
23. Gender norm*
12
Palliative terms
Informal care terms
Gender terms
24. “hegemon*” OR “patriarch*”
25. “social* construct*”
26. (MH “Sex Role”) OR “sex role”
27. (MH “Gender Bias”) OR “gender bias*”
28. Ageing
29. Aging
30. Elder*
31. (MH “Aged”) OR “aged”
32. (MH “Death”) OR “death”
33. Dying
Inclusion Exclusion
Written in English language Written in languages other than English
Articles focusing on gender and family-
caregiving
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
caregiver.
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
November 2014
Articles before and after this time period
Table 1: Inclusion and exclusion criteria for systematic search
13
Aging terms
14
15
Total number of titles identified
through searches = 932
Identification
Excluded = 50
Excluded as full text unavailable =
1
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
title/abstract= 658
Total number of titles minus
duplicates (932- 234) = 698
Full text articles reviewed = 40
Screening
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;
28: 391-402.
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.
16
Eligibility New texts identified through
reference lists = 29
Included
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-
91.
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;
61: P33-P45.
18. Bamford S and Walker T. Women and dementia – not forgotten. Maturitas. 2012; 73:
121-6.
19. Hammarström A. Why feminism in public health? Scand J Public Health. 1999; 27:
241-4.
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.
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... [19] In a recent population-based study eighty percent of the CGs were women and a majority of the patients were cared for by immediate family members like spouses, children, siblings, etc. [20] Gender differences in caregiving and their negative impact on well-being are well studied. [21] When compared to other relatives as carers, we discovered that caregivers who were spouses or children of stroke survivors had a higher level of stress. This is in line with the findings of a study, which found that caring for a spouse or children causes more stress than caring for other relatives such as siblings, parents, etc. [22] These findings support previous findings on the more difficult nature of spousal caring, and they show that this is also true of parental caregiving. ...
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Introduction: Stroke survivors have moderate to severe disability that limits their employment status and social mobility. Family members are usually not prepared to deal with the consequences of a stroke. The care of stroke patients usually leads to stress and burden among the caregivers. Aim: To assess the strain among the caregivers of stroke patients with the Caregiver Strain Index (CSI) and find the correlation between their age and duration of stroke with that of the caregiver strain. Materials and Methods: A cross-sectional study was done at various hospitals in the South Gujarat region. After explaining the purpose and taking the informed consent, 50 participants were included in the study. The interviewer filled a pre-structured proforma for patients and their caregivers, as well as a CSI. Statistical analysis was done using SPSS 15. Results: The mean age of participants and caregivers were 60.06 ± 15.43 years and 49 ± 15.07 years, respectively. Male stroke survivors were 60% among the sample of 50. Caregiver's strain was found to be high in 84% (n=42) and low in 16%(n=8) of the caregivers of stroke patients. A positive correlation was present between the patient's age and CSI score (r=0.132) and a negative correlation between the duration of stroke and CSI score (r=-0.069) with spearman correlation. Conclusion: Among the caregivers of stroke patients, the strain was found to be high. Also, with the increasing age of stroke patients, the level of stress on caregivers increases. As the duration of stroke increases, the caregiver strain reduces.
... Although no study has found a relationship between gender and knowledge of and attitudes towards palliative care (16,17,(25)(26)(27)(28), female caregivers appear to be more inclined to provide palliative care and end-of-life care. Gender affects the quality of this type of care (29). ...
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Background: Changes in the course of diseases, their treatment, and care provision result in the need for a specific type of care known as palliative care. Medical staff’s knowledge and awareness of palliative care is important in this regard. Objectives: This study aims to examine the caregivers’ knowledge and awareness of palliative care and to determine the related predictors. Methods: In this cross-sectional study, 277 subjects were selected from among the caregivers working in the selected teaching hospitals in Iran through non-randomized sampling method. The subjects were asked to fill the online questionnaire which consisted of 3 sections including demographic data, knowledge, and attitude toward palliative care. Descriptive, inferential statistics, correlation and regression analyses were performed. Results: The mean scores of care providers’ attitude and knowledge were 140.90 ± 11.56 and 19.36 ± 2.73 respectively. There was a significant relationships between some variables such as working place, education level, age, palliative care-related working experience, and the necessity to pass training courses and the mean scores of attitude and knowledge. Conclusions: Since palliative care providers’ level of knowledge and attitude were reported to be moderate, training courses at different levels in the form of clinical courses should be offered with the aim of improving care providers’ skills and scientific abilities. It is essential to include the related topics in the curricula of academic programs.
... In addition to the losses in functional capabilities and the increase of chronic degenerative diseases that come with advancing age [1][2][3], in facial skin, signs of ptosis, changes in the expression lines and facial contour, presence of wrinkles, muscular flaccidity and decreased muscle tone can be observed [4]. Other important factors associated with advancing age are low self-esteem and lack of quality of life, which can lead to stress, depression, and reduction in an individual's social activities and involvement [5][6][7]. ...
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Evidence has supported the use of leucine as a promising agent for the maintenance of muscle tone. This study aimed to assess the combined effect of leucine and cream-based lactic acid (novel cosmetic product), associated with the use of surface electrical stimulation to improve contour and facial tonus in women. A total of 23 women were randomly allocated into two groups: Experimental (EG)—use of the leucine-based cream and lactic acid + electrostimulation for facial toning (mean intensity 13 Hz and protocol in progression); and placebo (GP)—use of the placebo cream (without the addition of leucine and lactic acid) + stimulation with the same protocol as the EG. Each group used their cream daily and underwent the intervention protocol three x/week with stimulation for 40 min, for a total of 8 weeks. Three main outcomes were reported: angular variation of facial contour by means of photogrammetry, muscle tone through the electromyographic activity of the masseter and zygomatic muscles during rest and functional tasks of biting and smiling. A significant effect of the intervention and between the groups was obtained for the experimental group against the placebo group for facial contour and muscle tone. An increased muscular activity of the masseter (average 28%) when smiling, and a reduction of zygomatic activity (in average 41%) when biting were found. The use of cream containing leucine and lactic acid combined with electrostimulation contributes to the improvement of facial contour and muscle tone when biting and smiling.
... GBA+ can be applied to any realm of human activity [29] while SGBA+ is specifically required in health and medicine [32]. SGBA+ is also useful in assessing research, as a tool that invites detailed review of research methods, data analysis and reporting and can be a component in assessing quality of studies, such as systematic reviews [33]. SGBA+ applies learning from both social and biological sciences, to generate speculation about potential effects and impacts. ...
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Including sex and gender considerations in health research is considered essential by many funders and is very useful for policy makers, program developers, clinicians, consumers and other end users. While longstanding confusions and conflations of terminology in the sex and gender field are well documented, newer conceptual confusions and conflations continue to emerge. Contemporary social demands for improved health and equity, as well as increased interest in precision healthcare and medicine, have made obvious the need for sex and gender science, sex and gender-based analyses (SGBA+), considerations of intersectionality, and equity, diversity and inclusion initiatives (EDI) to broaden representation among participants and diversify research agendas. But without a shared and precise understanding of these conceptual areas, fields of study, and approaches and their inter-relationships, more conflation and confusion can occur. This article sets out these areas and argues for more precise operationalization of sex- and gender-related factors in health research and policy initiatives in order to advance these varied agendas in mutually supportive ways.
... Our finding that men described being less satisfied than women with life in the NH could relate to different expectations men and women have about care they will receive as they age, which could predispose men to worse QoL in NHs. Given the gendered experiences people have throughout their lives, men may be more likely than women to expect family members to assume central caregiving roles (Morgan et al., 2016;Ridgeway et al., 2009). ...
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Background and Objectives Despite research documenting gender differences in numerous outcomes in later life, we know little about gender differences in quality of life (QoL) for nursing home (NH) residents. This study examines the relationship between gender and residents’ QoL, including possible reasons for differences observed. Research Design and Methods We used a mixed methods design including surveys with a random sample of Minnesota NH residents using a multidimensional measure of QoL (n=9,852), resident clinical data, facility-level characteristics (n=364), interviews with residents (n=64), and participant observations. We used linear mixed models and thematic analysis of resident interviews and observations to examine possible gender-related differences in residents’ QoL. Results After controlling for individual and facility characteristics, men reported lower overall QoL than women, including significantly lower ratings in several QoL domains. In interviews, men noted being less satisfied with activities than women, having fewer friends, and being less able to rely on family for support. Some women described the NH as a place of respite, but men more often described being dissatisfied with life in the NH and undesirable for long-term living. Our observations were consistent with interview findings but provide additional nuances, such as that some men organized their own social groups. Discussion and Implications Our findings suggest men and women experience QoL differently in NHs, with men reporting lower QoL in several domains. Tailoring more activities for men and finding ways to strengthen relationships for men in NHs could help reduce the gender differences in QoL we observed.
... When society determines that women are more qualified and more suitable for care duties, women are seen to carry more responsibilities. As a result, women have been found to experience higher physical and mental stress than men due to higher expectations of women to provide care to ageing parents (Grigoryerva, 2017), the elderly with chronic illness (Chiao, Wu & Hsiao, 2015) or in need palliative care at the end of life (Morgan et al., 2016). ...
... It was also difficult to reach interviewees with migrant backgrounds. The ratio of daughter/son in the sample of children who cared for a parent was relatively uneven as well, but at the same time reflects the dynamic of gender in care provision, as recognized in palliative care for older adults [43] or among people with a migrant background [41]. A further limitation in this regard is that we did not systematically document demographic variables of each participant, such as religion or social background, but left it to the initiative of the participants whether or not to share such information. ...
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Background Family caregivers, such as partners or other family members, are highly important to people who desire to stay at home in the last phase of their life-limiting disease. Despite the much-investigated challenges of family caregiving for a patient from one’s direct social network, lots of caregivers persevere. To better understand why, we aimed to specify how normative elements – i.e. what is considered good or valuable – shape family caregivers’ experiences in Dutch home settings. Methods From September 2017 to February 2019, a total of 15 family caregivers, 13 bereaved family caregivers, and 9 patients participated in one-time in-depth interviews. The data were qualitatively analyzed following a grounded theory approach. Results Central to this study is the persistent feeling of being called to care. By whom, why, and to what? Family caregivers feel called by the patient, professionals entering normal life, family and friends, or by oneself; because of normative elements of love, duty, or family dynamics; to be constantly available, attentive to the patient while ignoring their own needs, and assertive in managing the caring situation. The prospect of death within the palliative care context intensifies these mechanisms with a sense of urgency. Conclusions Our analysis showed a difference between feeling called upon in the caring situation on the one hand, and how caregivers tend to respond to these calls on the other. Taking into account the inherent normative and complex nature of family caregiving, the pressing feeling of being called cannot – and perhaps should not – simply be resolved. Caring might be something families just find themselves in due to being related. Rather than in feeling called upon per se, the burden of care might lie in the seeming limitlessness to which people feel called, reinforced by (implicit) social expectations. Support, we argue, should enable caregivers to reflect on what norms and values guide their responses while acknowledging that caring, despite being burdensome, can be a highly important and rewarding part of the relationship between partners or family members.
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This study used nationally representative data from the China Longitudinal Ageing Social Survey 2018 to examine how activity patterns in the personal and family life domains were associated with social networks among Chinese older adults and whether internet use changed these relationships. Using latent class analysis, we identified four activity patterns, including Personal‐centered Activity class (14.37%), Low Activity class (58.06%), Family‐centered Activity class (19.24%), and Balanced Activity class (8.33%). Multivariate analyses revealed that the Personal‐centered Activity and Low Activity classes were associated with looser family ties compared with the Family‐centered Activity class, whereas the Balanced Activity class was associated with closer friendship ties. Internet usage was significantly associated with stronger family and friendship ties in the Low Activity group. Intervention programs to address the digital divide and engage older adults with limited offline social engagement in online communications may have positive effects on maintaining or expanding their social networks.
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Family caregivers suffer physically, mentally, and spiritually. Community volunteers play an important role in supporting patients at the end of life or former caregivers in bereavement. However, there are no research reports of volunteer services focused on maintaining the wellbeing of end-of-life caregivers. To have volunteers, a hired volunteer coordinator, health care providers, and researchers implement and formatively evaluate a volunteer service to enable family caregivers to maintain their well being while providing care and subsequent bereavement. This presentation will focus on the volunteers' roles with the project as both agents of change to the service and as support for the caregivers. A qualitative formative evaluation informed by Guba and Lincoln's Fourth Generation Evaluation (1989) participatory design was conducted. Data was collected through individual interviews, focus groups, participant observation during volunteer support meetings, and through volunteers' written reflections. Amongst the volunteers, volunteer coordinator, and principal investigator, there was mutual respect for and interest in learning about everyone's roles and experiences in the project. The experience was rewarding because they felt they helped the family caregiver and enjoyed developing and improving the service and working in a supportive team. Volunteers' challenges included being nervous for their first meeting with a caregiver, and frustration with some rules put in place to protect them (e.g. not helping the caregiver with direct care for the patient). Volunteers can be an effective part of the research team, while providing valuable support and encouragement for family caregivers to maintain their own wellbeing. © 2015, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
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RÉSUMÉ Cette étude a examiné les corrélats de la prestation de soins de la fin de vie fournis par les enfants adultes à leurs parents âgés et le rôle du sexe des enfants adultes en soins familiaux dans la Chine rurale. Les données proviennent de cinq vagues de l'Étude longitudinale du bien-être des personnes âgées en milieu rural dans la province de l'Anhui, en Chine, pendant 12 ans, et d'une enquête post-mortalité. On a utilisé la modélisation linéaire hiérarchique . Les résultats ont montré que l'ordre de naissance des enfants adultes, la distance géographique antérieure, et l'échange du soutien intergénérationnel antérieur étaient significativement associés à la prestation de soins de famille de la fin de vie. Les enfants les plus âgés, par rapport à d'autres frères et sœurs, fourni les plus grand soins de fin de vie pour leurs parents. Les enfants qui cohabitent avec les parents plus âgés avant leur mort, par rapport à d'autres enfants des mêmes parents, ont offert les plus grands soins. Les enfants adultes qui avaient déjà échangé le soutien instrumental avec les parents âgés avant la mort, en particulier les fils, tendaient à fournir le plus grands soins en fin de vie, par rapport à ceux d'autres.
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Background The limitations of traditional forms of systematic review in making optimal use of all forms of evidence are increasingly evident, especially for policy-makers and practitioners. There is an urgent need for robust ways of incorporating qualitative evidence into systematic reviews. Objectives In this paper we provide a brief overview and critique of a selection of strategies for synthesising qualitative and quantitative evidence, ranging from techniques that are largely qualitative and interpretive through to techniques that are largely quantitative and integrative. Results A range of methods is available for synthesising diverse forms of evidence. These include narrative summary, thematic analysis, grounded theory, meta-ethnography, meta-study, realist synthesis, Miles and Huberman's data analysis techniques, content analysis, case survey, qualitative comparative analysis and Bayesian meta-analysis. Methods vary in their strengths and weaknesses, ability to deal with qualitative and quantitative forms of evidence, and type of question for which they are most suitable. Conclusions We identify a number of procedural, conceptual and theoretical issues that need to be addressed in moving forward with this area, and emphasise the need for existing techniques to be evaluated and modified, rather than inventing new approaches.
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Background. With an aging population and public policies that limit accessible and affordable formal care services, informal caregivers, largely women, will continue bearing the overwhelming responsibility for home and long-term care services provision. Objectives. This study examined gender differences among informal caregivers in caregiving activities, intensity, challenges, and coping strategies and assessed the differential effects of caregiving on their physical and emotional well-being. Research Design. Cross-sectional study conducted between May and September 1998. Subjects. Telephone interviews were conducted with a randomly selected, nationally representative sample of 1002 informal caregivers. Measures. Caregivers’ sociodemographic, and physical and emotional health characteristics; caregiving type and intensity; formal care support; difficulty with care provision; unmet needs; coping strategies; and the care recipients’ health and relationship with caregiver were examined between the genders using descriptive and multivariate analyses. Results. Compared with men caregivers, women caregivers were significantly more likely to be 65 years of age or older, black, married, better educated, unemployed, and primary caregivers; provide more intensive and complex care; have difficulty with care provision and balancing caregiving with other family and employment responsibilities; suffer from poorer emotional health secondary to caregiving; and cope with caregiving responsibilities by forgoing respite participation and engaging in increased religious activities. Conclusions. Informal caregivers, particularly women, are under considerable stress to provide a large volume of care with little support from formal caregivers. Program planners, policy makers, and formal care providers must act together to provide accessible, affordable, and innovative support services and programs that reduce family caregiving strain.
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We know much about caregiving women compared with caregiving men and caregiving spouses compared with caregiving adult children. We know less about the intersections of relationship and gender. This article explores this intersection through the well-being (burden and self-esteem) of caregivers to family members with dementia. Throughout British Columbia, Canada, 873 caregivers were interviewed in person for on average, over 1½ hours. The results reveal that daughters experience the highest burden but also the highest self-esteem, suggesting the role is less salient for their self-identities. Wives emerge as the most vulnerable of the four groups when both burden and self-esteem are considered. The data confirm the usefulness of the intersectionality framework for understanding co-occupancy of more than one status and indicate that positive cognitive well-being and negative affective well-being can be differentially related. Multivariate analyses confirm the importance of caregiver, not patient, characteristics for burden and self-esteem. © The Author(s) 2014.
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This study uses quantitative and qualitative data collected from 94 daughters and daughters-in-law to examine the effects of caregiving on marital satisfaction across the first year of caring for an elderly parent with dementia. While there was no change in mean marital satisfaction scores, more than one-third of the women reported notably lower or higher scores by the end of the year. Analyses indicated that changes in the women's marital satisfaction were associated with variations in their husbands' emotional support and hindrance of the caregiving effort. Husbands' support and hindrance were affected by the husbands' perceptions that caregiving interfered with their wives' performance of traditional family roles. Husbands' instrumental support did not help to explain changes in caregivers' marital satisfaction across the year.
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Background There have been many studies on the unmet needs of palliative care patients and carers from the perspective of bereaved caregivers. However, the unmet needs of palliative care patients and carers from the perspective of current patients and their carers have received little research attention. Aim As home-based services have become one of the main delivery models of palliative care, the aim of this review was to describe, evaluate and summarise the literature on the unmet needs of palliative home care patients and carers. Design The systematic review of qualitative and quantitative studies was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Data sources PubMed, CINAHL, Embase, MEDLINE, PsycINFO, AMED and CareSearch were searched to find empirical studies on the self-reported unmet needs of palliative home care patients and carers. Results Nine qualitative studies, three quantitative studies and three mixed-design studies were identified. The most frequently reported unmet need was effective communication with health-care professionals, the lack of which negatively impacted on the care received by patients and carers. Physical care needs were met, which indicates that the examined palliative home care services were delivering satisfactory care in this domain, but lacking in other areas. Conclusions The focus therefore should be on improving other aspects of patient care, including communication by health professionals to prevent or reduce suffering in areas such as psychosocial domains. Valid and reliable quantitative measures of unmet needs in palliative care are needed to examine this area more rigorously.
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Approximately 1,000,000men currently care for spouses with cognitive impairment after leaving market-economy careers through normative or early retirement. In the process, they made the difficult transition from work in the public arena to the private, largely invisible world of family care. This article explores how elderly men caregivers adapt to such drastic changes in social location, what resources they call upon to ameliorate the impact of those changes, and what we can learn from their experiences that will inform future research and practice. Data are from a qualitative study of thirty elderly men care-givers in Rochester, New York. Two major themes emerged, demonstrating both struggle and success. The most significant struggle was coping with the isolation of home care; by contrast, many men were able to successfully make the transition through the use of a style of caregiving that incorporated a combination of management and nurturing skills.
Article
Background: Informal care provided by family members is an essential feature of health care systems worldwide. Although caregiving often begins early in the disease process, over time informal caregivers must deal with chronic, debilitating, and life-threatening illnesses. Despite thousands of published studies on informal care, little is known about the intersection of informal caregiving and formal palliative care. Objective: The goal of this review is to identify research priorities that would enhance our understanding of the relationship between informal caregiving and palliative care. Design: To better understand palliative care in the context of caregiving, we provide an overview of the nature of a caregiving career from inception to care recipient placement and death and the associated tasks, challenges, and health effects at each stage of a caregiving career. This in turn leads to key unanswered questions designed to advance research in caregiving and palliative care. Results: Little is known about the extent to which and how palliative care uniquely affects the caregiving experience. This suggests a need for more fine-grained prospective studies that attempt to clearly delineate the experience of caregivers during palliative and end-of-life phases, characterize the transitions into and out of these phases from both informal and formal caregiver perspectives, identify caregiver needs at each phase, and identify effects on key caregiver and patient outcomes. Conclusions: Inasmuch as most caregivers must deal with chronic, debilitating, and often life-threatening conditions, it is essential that we advance a research agenda that addresses the interplay between informal care and formal palliative care.
Article
A phenomenological method was used to investigate the male experience of caregiving for a family member with Alzheimer's disease. Eight men, 5 spouses, and 3 sons were interviewed to find out what their experiences were like. From the analysis of the interview data, eight themes were identified for all the caregivers: (a) enduring, (b) vigilance, (c) a sense of loss, (d) aloneness and loneliness, (e) taking away, (P searching to discover, (g) the need for assistance, and (h) reciprocity. An additional theme was identified from the experience of the son caregivers: (i) overstepping the normal boundaries. The themes were interrelated to form a whole that captured the experience of caregiving for the male caregivers. Alzheimer's disease shaped these men's feelings toward every aspect of caregiving. Findings from this study challenge the primacy of the concept of "caregiver burden" as the predominant aspect of caregiving.