Health Promotion International, 2022, 1–23

Health Promotion International, 2021, 38, 1–23

https://doi.org/10.1093/heapro/daac049
https://doi.org/10.1093/heapro/daac049
Perspectives
Perspectives

Perspectives

The impact of caring for family members with

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mental illnesses on the caregiver: a scoping
review
1,
Rita Phillips *, Mark Durkin2, Hilary Engward3, Graham Cable3, and
Maria Iancu3
1
Robert Gordon University, Garthdee House, Garthdee Road, Aberdeen AB10 7QB, UK, 2Leeds Trinity
University, Leeds, UK and 3Anglia Ruskin University, Cambridge Campus, East Rd, Cambridge CB1 1PT, UK
*Corresponding author. E-mail: [email protected]

Summary
A large number of multidisciplinary, qualitative and quantitative research suggests that providing
care for family members with mental health illnesses can have both positive and negative effects on
the carers’ wellbeing. However, to date a comprehensive overview and synthesis of literature that
compares and contrasts positive and negative effects of family-caregiving on the carer is missing. To
address this gap, this scoping review examines the effects of family-caregiving on carers’ wellbeing.
A Boolean search generated a total of 92 relevant articles that were included in the analysis. The
results suggest that, to understand the effects of family-caregiving on the carer’s mental and physical
wellbeing, it is necessary to take a combination of situational and sociodemographic characteristics
into consideration. Elderly, female, spousal-carers and primary-carers may be a group that is at risk of
suffering from a lack of positive mental and physical wellbeing as a result of caring. However, the neg-
ative effects of caregiving can be balanced by extraversion, social support and religious or spiritual
beliefs. Therefore, future interventions that aim to promote family caregivers’ wellbeing may need to
take personality, particular circumstances as well as cultural and personal beliefs into consideration.

Key words: family caregiving, scoping review, mental health, family carers

INTRODUCTION
According to recent studies, an increasing number of peo- 30–50% experience a relapse of symptoms within the
ple experience mental health disorders (Fernando, 2014; first 6 months and 50–70% in the first 5 years after being
Bruffaerts et al., 2015; Polanczyk et al., 2015; Hanna discharged (Chang and Chou, 2015; Ali et al., 2017;
et al., 2018). Due to a global deinstitutionalization of the Sadock et al., 2017). Comorbidity with other mental ill-
treatment of mental illnesses, only a low proportion of ness, non-adherence to medication, shorter duration on
those suffering from mental illnesses are admitted to treatment and experiencing stressful life events as well as
hospitals (WHO, 2017). Of those who are hospitalized, high disability score, and a single admission history are

C The Author(s) 2022. Published by Oxford University Press. All rights reserved.
V
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2 R. Phillips et al.

significant predictors of mental health relapse (Agenagnew (Kate et al., 2013; Roth et al., 2015; Grover et al., 2017;
and Kassaw, 2020; Moges et al., 2021). Patients with psy- Shiraishi and Reilly, 2019).
chotic disorders who also experience common mental While previous research examined possible chal-
health disorders such as depression and anxiety are more lenges and advantages of caring for family members
likely to experience a relapse (Ali et al., 2017; Moges with mental health problems, a comprehensive overview
et al., 2021). Some novel approaches such as receiving and synthesis of the literature appears to be missing.
low-intensity personalized advice via text-messages post- This is problematic, as there is a need to understand the
treatment (Malins et al., 2020) and specific forms of ther- unique challenges that family carers face and determine

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apy such as Acceptance and Commitment Therapy possible sources of help and support that would allow
(Østergaard, 2020), mind–body relaxation and therapies for implementation of informed strategies to meet the
that allow the patient to develop healthy coping skills carers’ needs. The present study addresses this gap by
(Melemis, 2015) can be particularly beneficial in relapse reviewing empirical studies and scientific evidence to
prevention. However, as family and spousal carers live capture both the challenges and positive aspects of care-
with patients and are usually the first to recognize behav- giving in the family context.
ioural changes, they play an increasingly important role in
supporting and rehabilitating those who suffer from men-
tal health illnesses.
METHODS
The challenges that family members who care for A scoping review was used to synthesize the relevant lit-
those with mental health illnesses face are well docu- erature on family caregiving (Arksey and O’Malley,
mented in the literature. Family caregivers are at an in- 2005; Levac et al., 2010). Scoping reviews are a ‘useful
creased risk of suffering physically, psychologically and way of mapping fields of study where it is difficult to vi-
socially while providing care for family members with sualize the range of material that might be available’
mental health conditions (Sharma et al., 2016; Akbari [(Arksey and O’Malley, 2005), p. 21]. They allow for a
et al., 2018; Norris et al., 2018; Özgönül and Bademli, synthesis of the literature across different academic dis-
2022). Specifically, studies have shown that caring for ciplines. This technique was relevant to the present
family members with mental health problems can lead study as empirical inquiry surrounding positive and neg-
to social isolation, financial difficulties, occupational ative effects of family caregiving are the subject of inter-
restrictions and negative emotions such as anger, aggres- est in various disciplines. For example, clinical studies
sion, frustration, low self-esteem, constant worry and might examine the physical and mental health effects of
feelings of helplessness (van der Sanden et al., 2013, family caregiving, and psychological studies observe the
2015; Yin et al., 2014; Lamont and Dickens, 2021). In severity of caregiver burden or changes in identity for-
addition, there is an increased risk of reduced life- mation, whereas sociological studies tend to focus on
expectancy, lower wellbeing and mastery of life skills, the effects of family caregiving on social structures such
and less time spent doing leisure activities for family as families or friendship networks. A scoping review uti-
caregivers (Akbari et al., 2018; Hsiao et al., 2020; lizes a rigorous methodological framework consisting of
McKee, 2020; Dadalto and Cavalcante, 2021). five steps, which includes contributions from several dis-
Yet, research also shows that caring for a family ciplines. It maps the terrain of existing research and
member may also affect the caregivers in positive ways highlights gaps in knowledge (Arksey and O’Malley,
(Roth et al., 2015). For example, literature suggests that 2005; Levac et al., 2010). As a method for reviewing lit-
some family carers can become more resilient over time erature, scoping studies have distinct characteristics
(Crellin et al., 2014; Donnellan et al., 2015; Ong et al., (Arksey and O’Malley, 2005). Unlike systematic
2018; Post et al., 2021). While there are different defini- reviews, they address broader topics and topic areas in
tions for caregiver resilience in the literature, they all which many different study designs might be applicable
share similar descriptions for the characteristics for (Arksey and O’Malley, 2005). Therefore, this approach
overcoming adversity. This is explained as not only be- was suitable to identify relevant themes in family care-
ing about surviving the burden associated with caring giving in relation to caregiver health and wellbeing. The
for a mentally ill family member, but also growing into present study utilized Arksey and O’Malley’s (Arksey
a stronger, more adaptable and healthier person and O’Malley, 2005) five-step protocol of scoping
(Amagai et al., 2016; Pione et al., 2021). In addition, reviews because this is one of the most frequently uti-
family caregiving can improve the relationship between lized and published frameworks in scoping review litera-
the caregiver and the person they care for, while also ture (i.e. Abraham et al., 2010; Halas et al., 2015;
providing a sense of inner strength and satisfaction O’Flaherty and Phillips, 2015; O’Brien et al., 2016;
The impact of caring for family members with mental illnesses 3

Walsh et al., 2019). The five steps include: (i) identifying Table 1: Key words and search strings
the research question, (ii) identifying relevant studies,
Key words Search strings
(iii) study selection, (iv) charting the data and (v) collat-
ing, summarizing and reporting the results. Each step is Mental health Mental health problem*
outlined in more detail below. Mental health issue*
Ill-mental health
Mental health disorder*
Step 1: Identifying the research question
Mental Distress
The first methodological step when conducting a Family care Spousal carer*/ing

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scoping review is to determine the focus of the research Informal care*/caring
question (Arksey and O’Malley, 2005; Levac et al., Family care*/caring
2010). A research team from Robert Gordon University Unpaid care*/caring
(Aberdeen), Anglia Ruskin University and the Forces in Care for family members with—
Support of family members with—
Mind Research Centre (Chelmsford) considered the
appropriate balance of breadth and depth for the
research topics (Arksey and O’Malley, 2005; Levac
et al., 2010) during the literature review. The following Step 3: Study selection
questions were determined in December 2020 and Decisions surrounding the inclusion and exclusion of
guided the scoping review: studies in a scoping review rely upon an iterative and
collaborative process involving all members of the re-
“How does family caregiving affect the caregiver
searcher team (Levac et al., 2010). To address this we
physically, mentally and socially?” and
used the Preferred Reporting Items for Systematic
“How can family carers be best supported?”. Reviews flow diagram (cf. Figure 1; Moher et al., 2009).
Databases were searched with a combination of search
Step 2: Identifying relevant studies strings and Boolean operators to ensure the inclusion of
Guidelines concerning the identification of the literature at least one search string from the terms listed in
in scoping reviews, include the development of search Table 1. Both qualitative and quantitative studies were
terms, identification of databases, and the establishment included. The exclusion criteria were the publication be-
of time frames, were followed (Levac et al., 2010). ing an editorial or review article, studies with a primary
Therefore, the present review drew on a broad interpre- focus on the care receiver and not the family carer, the
tation of search strings related to family caring and well- patient being a child or adolescent (under 18 years of
being. The social and health sciences databases APA age) and studies about caring for physical health disor-
Psych Articles, Web of Science, Science Direct, Scopus, ders. Editorial and review articles were examined to en-
Springer Link, SAGE Discipline Hub: Psychology and sure the complete retrieval of relevant primary research
Counselling, Medline, SocINDEX, CINAHL and noted therein.
PTSDpubs were accessed. Additional studies were iden-
tified by manual searching the reference lists of the Step 4: Charting the data
reviewed articles. The selection of articles was limited to In scoping reviews, charting the data involves reviewing,
peer-reviewed, English-language empirical studies pub- documenting and sorting the information that was re-
lished between January 2001 and March 2021 to ensure trieved in accordance with the key issues and themes
the recency of empirical evidence. Databases were (Arksey and O’Malley, 2005). An Excel spreadsheet was
searched by combining the search strings on family care- used to extract, document and organize the relevant in-
giving and the physical, mental and social consequences formation from each reviewed article (Levac et al.,
of caring. The key words were ‘Mental Health’ with the 2010). The spreadsheet included separate columns for
search strings ‘Mental health problem*’, ‘Mental health article title, authors, database from which the article
issue*’, ‘Ill-mental health’, ‘Mental health disorder*’, was drawn, the population and social-cultural back-
‘Mental Distress’ and ‘Family Care’ with the search ground, mental illness of the patient whom family carers
strings ‘Spousal carer*/ing’, ‘Informal care*/caring’, supported, methodological framework, instruments
‘Family care*/caring’, ‘Unpaid care*/caring’, ‘Care for used in the study, method of analysis, main findings,
family members with –’, ‘Support of family members implications and any additional information (e.g.
with’ (cf. Table 1). screenshots of tables and figures).
4 R. Phillips et al.

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Fig. 1: PRISMA flow diagram (cf. Moher et al., 2009).

Step 5: Collating, summarizing and reporting the articles, 83 were excluded as they were duplicates. The
results research team examined the remaining 653 articles for
The articles were read independently by members of the inclusion/exclusion independently. Concordance in
research team and topics relevant to the purpose of the interrater reliability was high with the researcher team
review were identified. The research team compared, agreeing on inclusion and exclusion of 646 of the 653
summarized and collated the identified preliminary articles (98.93%). Arguments for inclusion or exclusion
themes. The data were then re-examined and reorgan- of the remaining seven articles (1.07%) were discussed
ized to reflect deeper and more nuanced perspectives of and consensus on inclusion/exclusion was reached be-
the studies’ findings. Based on common meanings and fore commencing with further analyses. The initial
central issues, the findings for each study were organized screening involved reading the abstracts and skimming
and integrated into categories and themes to highlight the tests, which identified 281 articles that could poten-
prevalent issues and gaps in knowledge. The research tially qualify for inclusion in the review. These 281
team commenced with collating, summarizing and articles were read in detail. From the 231 articles, a total
reporting the results in April 2021 and concluded this of 189 were excluded from further review, based on the
step in August 2021. exclusion criteria (cf. Table 1). Therefore, a total of 92
studies were included in the present review, of which 14
were qualitative and 78 were quantitative studies. Most
RESULTS studies focussed on American or British participants.
Boolean searches including the string search terms gen- Other countries represented were Australia, Canada,
erated a total output of 736 articles. From these 736 Chile, China, Colombia, Cyprus, Finland, Germany,
The impact of caring for family members with mental illnesses 5

Greece, India, Iran, Ireland, Italy, Japan, Malaysia, However, while primary care for family members
Malta, New Zealand, Norway, Portugal, Saudi Arabia, can have negative consequences on carer wellbeing, soci-
Spain and the Netherlands. Various mental health con- odemographic factors can also determine the extent to
ditions were present in this review, the highest propor- which individuals may be affected by such negative con-
tion being articles concerning family carers’ experiences sequences. For example, 32 (34.78%) of the reviewed
with dementia (38 articles, 41.3%), followed by family studies indicated that gender significantly impacts on the
carer’s experiences handling multiple and/or various care givers self-perceived burden of care. The results
mental health conditions (25 articles, 27.18%) and from these studies are consistent in suggesting that fe-

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Alzheimer disease (13 articles, 14.13%). A smaller num- male family caregivers experience higher levels of psy-
chological distress, shame and caregiver burden [i.e.
ber of articles discussed family carers’ experiences with
(Pattanayak et al., 2010; Chiang et al., 2015; Gresswell
depression (3 articles, 3.26%), polytrauma in relation to
et al., 2018; Avdikou et al., 2019; Brites et al., 2020)].
traumatic brain injury (TBI; 3 articles, 3.26%), schizo-
This trend was evident across different cultures and ap-
phrenia (2 articles, 2.17%), suicidal ideation (2 articles,
plied to various mental health disorders equally
2.17%), post traumatic stress disorder (PTSD; 2 articles,
(Papastavrou et al., 2009; Nordtug and Holen, 2011;
2.17%), psychosis (1 article, 1.09%), Parkinson disease
Pöysti et al., 2012). In addition, if wives cared for their
psychosis (1 article, 1.09%), Postpartum psychiatric dis- husbands, they experienced lower marital satisfaction,
order (1 article, 1.09%) and bipolar disorder (1 article, while the opposite effect was observed in husbands car-
1.09%). An overview of the studies included in the re- ing for their wives (Beeson, 2003; Dahlberg et al., 2007;
view can be found in Table 2. Lai, 2012; Choi, 2018). The literature around this phe-
As outlined in Table 3, the review identified three nomenon suggests that women feel more responsible for
main themes: (i) Negative Implications of Caring for providing care and as a result are left with multiple com-
Family Members with Mental Health Diseases, (ii) peting roles (Calasanti and Bowen, 2006; Dahlberg
Positive Implications of Caring for Family Members et al., 2007). Women are therefore more likely to experi-
with Mental Health Diseases and (iii) Moderating ence a loss of self and loneliness when caring for a fam-
Factors that can Contribute to the Family Carer’s ily member making them more susceptible to caregiver
Wellbeing. We now discuss these three themes in more depression, whereas men are more comfortable with let-
detail. ting others assume the carer role, and are more self-
reliant on themselves and others to provide social sup-
Negative implications of caring for family port (Calasanti and Bowen, 2006; Brown and Chen,
members with mental health diseases 2008; Sun et al., 2008; Ruisoto et al., 2020).
A major theme was the negative impact on the family The role of the carer and their relationship with the
caregiver’s physical and mental health. Most of the care-receiver was also found to impact on individual
articles included in this review examined clinical levels wellbeing. Specifically, research suggests that close ties
of psychological distress in family carers (33.7%; 31 such as being a spouse and/or living together with a
studies) and depression and depressive symptoms in rela- mentally ill person in an acute setting determines the
caregiver’s experiences of burden of care. For example,
tion to family caregiving (21.17%, 20 studies). This
in their quantitative study with 455 close relatives,
indicates that providing primary care for family mem-
found that burden was particularly high among spouses,
bers can have problematic consequences on the carers’
as they feel more isolated and have less leisure time than
wellbeing. For example, Mausbach et al. (Mausbach
other family carers. In addition, findings suggest that
et al., 2014) conducted a longitudinal study comparing
spouses who care for partners with mental health disor-
the individual experiences of 126 spousal carers for
ders are exposed to additional stressors that originate
Alzheimer patients. The placement of the care receiver from an internal conflict of roles were they are perceived
into care homes was associated with significant reduc- to ‘hold it all together’ in their relationship [(Casarez
tions in depressive symptoms, activity restriction and an et al., 2019), p. 393]. In this sense, spouses need to han-
increase in personal mastery in caregivers. These results dle challenging behaviours such as reckless spending or
are supported by studies that examined levels of psycho- rageful and hypercritical behaviour, minimizing any
logical distress and depressive symptoms in primary and issues that might arise during social encounters (Casarez
secondary caregivers across different mental health dis- et al., 2019). Besides the emotional burden, spousal
eases and different cultures [i.e. (Colvez et al., 2002; carers may also experience financial difficulties as they
Gonçalves-Pereira et al., 2020; Zwar et al., 2020)]. often give up their work to care for their loved ones.
6 R. Phillips et al.

Table 2: Table of articles and papers included in the analysis

References Participants Disease Method

Hahn, E. A., Boileau, N. R., Hanks, R. A., Sander, A. 131 family caregivers TBI Quantitative
M., Miner, J. A. and Carlozzi, N. E. (2020). Health
literacy, health outcomes, and the caregiver role in
traumatic brain injury. Rehabilitation Psychology,
65, 401–408. https://doi-org.ezproxy.rgu.ac.uk/10.
1037/rep0000330

Downloaded from https://academic.oup.com/heapro/article/38/3/daac049/6574394 by guest on 08 December 2023

Brickell, T. A., Lippa, S. M., French, L. M., Gartner, R. 264 caregivers (95.8% TBI Quantitative
L., Driscoll, A. E., Wright, M. M. and Lange, R. T. female)—veterans/
(2019). Service needs and health outcomes among military
caregivers of service members and veterans following
TBI. Rehabilitation Psychology, 64, 72–86. https://
doi-org.ezproxy.rgu.ac.uk/10.1037/rep0000249
Griffin, J. M., Lee, M. K., Bangerter, L. R., Van 564 caregivers—veterans TBI and Quantitative
Houtven, C. H., Friedemann-Sánchez, G., Phelan, S. Polytrauma
M., Carlson, K. F. and Meis, L. A. (2017). Burden
and mental health among caregivers of veterans with
traumatic brain injury/polytrauma. American
Journal of Orthopsychiatry, 87, 139–148. https://
doi-org.ezproxy.rgu.ac.uk/10.1037/ort0000207
Mausbach, B. T., Chattillion, E. A., Ho, J., Flynn, L. 126 spousal caregivers Alzheimer Longitudinal,
M., Tiznado, D., von Känel, R., Patterson, T. L. and Quantitative
Grant, I. (2014). Why does placement of persons
with Alzheimer’s disease into long-term care improve
caregivers’ well-being? Examination of psychological
mediators. Psychology and Aging, 29, 776–786.
https://doi-org.ezproxy.rgu.ac.uk/10.1037/a0037626
Gonçalves-Pereira, M., Zarit, S. H., Cardoso, A. M., 61 primary and 61 sec- Dementia Quantitative
Alves da Silva, J., Papoila, A. L. and Mateos, R. ondary family
(2020). A comparison of primary and secondary caregivers
caregivers of persons with dementia. Psychology and
Aging, 35, 20–27. https://doi-org.ezproxy.rgu.ac.uk/
10.1037/pag0000380.supp (Supplemental)
Meyer, O. L., Nguyen, K. H., Dao, T. N., Vu, P., 10 caregivers Dementia Qualitative
Arean, P. and Hinton, L. (2015). The sociocultural
context of caregiving experiences for Vietnamese de-
mentia family caregivers. Asian American Journal of
Psychology, 6, 263–272. https://doi-org.ezproxy.rgu.
ac.uk/10.1037/aap0000024.supp (Supplemental)
Otero, P., Torres, Á. J., Vázquez, F. L., Blanco, V., 491 caregivers Multiple Quantitative
Ferraces, M. J. and Dıaz, O. (2019). Does the disease
of the person receiving care affect the emotional state
of non-professional caregivers? Frontiers in
Psychology, 10, 1144.
Alzahrani, S. H., Fallata, E. O., Alabdulwahab, M. A., 377 caregivers Mental health Quantitative
Alsafi, W. A. and Bashawri, J. (2017). Assessment of illnesses
the burden on caregivers of patients with mental dis- (various)
orders in Jeddah, Saudi Arabia. BMC Psychiatry, 17,
1–8.
Chiang, C. Y., Lu, C. Y., Lin, Y. H., Lin, H. Y. and 164 family caregivers Suicidal ideation Quantitative
Sun, F. K. (2015). Caring stress, suicidal attitude and
suicide care ability among family caregivers of

(continued)
The impact of caring for family members with mental illnesses 7

Table 2: (Continued)
References Participants Disease Method

suicidal individuals: a path analysis. Journal of

Psychiatric and Mental Health Nursing, 22,
792–800.
Unwin, G. and Deb, S. (2011). Family caregiver uplift 44 family caregivers Intellectual Quantitative
and burden: Associations with aggressive behavior in disability or
adults with intellectual disability. Journal of Mental aggressive

Downloaded from https://academic.oup.com/heapro/article/38/3/daac049/6574394 by guest on 08 December 2023

Health Research in Intellectual Disabilities, 4, behaviour
186–205.
Choi, H. (2018). Giving or receiving spouse care and 3424 spousal care- Care—not Quantitative
marital satisfaction among older Korean individuals. givers—not specified specified
Social Science & Medicine.
Casarez, R. L., Barlow, E., Iyengar, S. M., Soares, J. C. 13 spousal caregivers Bipolar disorder Qualitative
and Meyer, T. D. (2019). Understanding the role of
m-Health to improve well-being in spouses of
patients with bipolar disorder. Journal of Affective
Disorders, 250, 391–396.
Greenwood, N., Pound, C., Brearley, S. and Smith, R. 44 family carers aged Dementia or other Qualitative
(2019). A qualitative study of older informal carers’ 70–87 years mental illness
experiences and perceptions of their caring role.
Maturitas, 124, 1–7.
Alasmee, N. and Hasan (2020). Primary caregivers ex- 21 family caregivers Schizophrenia Qualitative
perience of anti-psychotic medication: a qualitative
study. Archives of Psychiatric Nursing, 34, 520–528.
Colvez, A., Joel, M. E., Ponton-Sanchez, A. and Royer, 322 spousal caregivers Alzheimer Quantitative
A. C. (2002). Health status and work burden of
Alzheimer patients’ informal caregivers: comparisons
of five different care programs in the European
Union. Health Policy, 60, 219–233.
Anchan, V. and Janardhana, N. (2020). 21 husbands of women Postpartum Quantitative
Transformation of attitude through brief psychoedu- with postpartum psychiatric
cation program for the husbands of women with psychiatric disorder disorders
postpartum psychiatric disorders. Asian Journal of
Psychiatry, 51, 101841.
Lai, F. H. Y., Yan, E. W. H., Tsui, W. S. and Yu, K. K. 100 spouses Dementia Quantitative
Y. (2020). A randomized control trial of activity
scheduling for caring for older adults with dementia
and its impact on their spouse care-givers. Archives
of Gerontology and Geriatrics, 90, 104167.
Van Wijngaarden, B., Koeter, M., Knapp, M., Tansella, 252 family/friends/part- Multiple Quantitative
M., Thornicroft, G., Vázquez-Barquero, J. L. et al. ner caregivers for
(2009). Caring for people with depression or with outpatients with
schizophrenia: are the consequences different? depression and 151
Psychiatry Research, 169(1), 62–69. family/friends/partner
caregivers for
outpatients with
schizophrenia
Dahlrup, B., Ekström, H., Nordell, E. and Elmståhl, S. 369 family carers Multiple Quantitative
(2015). Coping as a caregiver: a question of strain
and its consequences on life satisfaction and health-
related quality of life. Archives of Gerontology and
Geriatrics, 61, 261–270.

(continued)
8 R. Phillips et al.

Table 2: (Continued)
References Participants Disease Method

Jones, S. M., Woodward, M. and Mioshi, E. (2019). • 108 informal carers; Dementia Quantitative
Social support and high resilient coping in carers of Spousal relationship
people with dementia. Geriatric Nursing, 40, was most
584–589. • Common (61%), as
was carer co-residence
with the person with

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dementia (78%).

Highet, N., Thompson, M. and McNair, B. (2005). • 37 carers partners Clinical Qualitative
Identifying depression in a family member: the carers’ (n ¼ 15/37), parents depression
experience. Journal of Affective Disorders, 87(1), • (n ¼ 19/37), and
25–33. siblings (n ¼ 3/37)

Beeson, R. A. (2003). Loneliness and depression in 49 caregiving spouses and Alzheimer Quantitative
spousal caregivers of those with Alzheimer’s disease 52 non-caregiving
versus non-caregiving spouses. Archives of control individuals
Psychiatric Nursing, 17, 135–143.
Kabitsi, N. and Powers, D. V. (2002). Spousal 30 American women Dementia Quantitative
motivations of care for demented older adults: a spousal carers, 44
cross-cultural comparison of Greek and American Greek women spousal
female caregivers. Journal of Aging Studies, 16, carers
383–399.
Mills, P. J., Ancoli-Israel, S., von Känel, R., Mausbach, 81 male and female Alzheimer Quantitative
B. T., Aschbacher, K., Patterson, T. L. et al. (2009). spousal caregiver and
Effects of gender and dementia severity on 41 non-caregivers
Alzheimer’s disease caregivers’ sleep and biomarkers
of coagulation and inflammation. Brain, Behavior,
and Immunity, 23, 605–610.
Teles, S., Ferreira, A. and Paúl, C. (2021). Access and 179 Portuguese Dementia Quantitative
retention of informal dementia caregivers in caregivers—unspecified
psychosocial interventions: a cross-sectional study.
Archives of Gerontology and Geriatrics, 93, 104289.
Morrison, V. and Williams, K. (2020). Gaining 3 women caregivers Dementia, stroke Qualitative
longitudinal accounts of carers’ experiences using and ftd
IPA and photograph elicitation. Frontiers in
Psychology, 11, 521382.
Zwar, L., König, H. H. and Hajek, A. (2020). 13 333 informal carers— Unspecified Quantitative
Psychosocial consequences of transitioning into unspecified
informal caregiving in male and female caregivers:
findings from a population-based panel study. Social
Science & Medicine, 264, 113281.
Willis, P., Vickery, A. and Symonds, J. (2020). “You 25 men; British—five Various (including Qualitative
have got to get off your backside; otherwise, you’ll distinct sample groups, dementia,
never get out”: older male carers’ experiences of including: male carers; Alzheimer,
loneliness and social isolation. International Journal men who were single physical
of Care and Caring, 4, 311–330. and living in urban or disabilities)
rural areas; men who
identified as gay and
were single or living
alone; and men with
hearing loss.
Brites, R., Brand~ao, T., Moniz Pereira, F., Hipólito, J. 36 informal caregivers Dementia Quantitative
and Nunes, O. (2020). Effects of supporting patients and their 36 care
with dementia: a study with dyads. Perspectives in receivers
Psychiatric Care, 56, 614–620.

(continued)
The impact of caring for family members with mental illnesses 9

Table 2: (Continued)
References Participants Disease Method

Mahomed, A. and Pretorius, C. (2020). Availability 11 adult males who were Alzheimer Qualitative
and utilization of support services for South African familial caregivers
male caregivers of people with Alzheimer’s disease in
low-income communities. Dementia, 20, 633–652.
Ruisoto, P., Contador, I., Fernandez-Calvo, B., Serra, 283 primary and family Dementia Quantitative
L., Jenaro, C., Flores, N. et al. (2020). Mediating ef- caregivers in Spain

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fect of social support on the relationship between re-
silience and burden in caregivers of people with
dementia. Archives of Gerontology and Geriatrics,
86, 103952.
Kamalzadeh, L., Salehi, M., Rashedi, V., Ahmadzad 60 family caregiver and Dementia Quantitative
Asl, M., Malakouti, S. K., Seddigh, R. et al. (2020). care-recipient pairs
Perceived burden of dementia care, clinical, psycho-
logical and demographic characteristics of patients
and primary caregivers in Iran. Applied
Neuropsychology Adult.
Tranvåg, O., Nåden, D. and Gallagher, A. (2019). 6 Norwegian women Dementia Qualitative
Dignity work of older women caring for a husband spousal carers
with dementia at home. Health Care for Women
International, 40, 1047–1069.
Hvidsten, L., Engedal, K., Selbæk, G., Wyller, T. B., 88 family carers— Dementia Quantitative
Benth, J.S., Kersten, H. unspecified
Avdikou, K., Stefanatos, C., Tsatali, M., Gouva, M. 55 family caregivers Dementia Quantitative
and Tsolaki, M. (2019). The role of gender in shame,
hostility, and aggression experienced by caregivers
for patients with dementia. American Journal of
Alzheimer’s Disease & Other Dementias, 34,
231–235.
Care recipients’ low level of cognitive function was as- 20 207 respondents and Unspecified Quantitative
sociated with greater perceived burden. Higher qual- 43 262 observations of
ity of support was associated with lower perceived 50þ carers
burden among female and male spouse caregivers,
daughter caregivers and mother
Mantri, S., Edison, B., Alzyoud, L., Marras, C., 145 partner caregivers Parkinson disease Mixed-methods
Chahine, L. M. psychosis (PDP) cross-sectional
study
Juntunen, K., Salminen, A. L., Törmäkangas, T., 4000 family caregivers in Unspecified Quantitative
Tillman, P., Leinonen, K. and Nikander, R. (2018). Finland
Perceived burden among spouse, adult child, and
parent caregivers. Journal of Advanced Nursing, 74,
2340–2350.
Dam, A. E., Boots, L. M., Van Boxtel, M. P., Verhey, F. 10 spousal caregivers of Dementia Qualitative
R. and De Vugt, M. E. (2018). A mismatch between people with dementia
supply and demand of social support in dementia and 17 network
care: a qualitative study on the perspectives of members
spousal caregivers and their social network members.
International Psychogeriatrics, 30, 881–892.
Beks, T. A. and Cairns, S. L. (2018). Contexts precipi- 16 Canadian female Veterans/PTSD Qualitative
tating help-seeking among partners of veterans with partners (English-
posttraumatic stress disorder: a qualitative speaking) of male
exploration. Traumatology, 24, 313. veterans with PTSD
Qualitative

(continued)
10 R. Phillips et al.

Table 2: (Continued)
References Participants Disease Method

Rahmani, F., Ebrahimi, H., Seyedfatemi, N., Namdar 14 female spousal Mental health
Areshtanab, H., Ranjbar, F. and Whitehead, B. caregivers of people illnesses
(2018). Trapped like a butterfly in a spider’s web: with severe mental (various)
experiences of female spousal caregivers in the care illness
of husbands with severe mental illness. Journal of
Clinical Nursing, 27, 1507–1518.

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Pattanayak, R. D., Jena, R., Tripathi, M. and 32 patient–caregiver Alzheimer’s Quantitative
Khandelwal, S. K. (2010). Assessment of burden in dyads India disease
caregivers of Alzheimer’s disease from India. Asian
Journal of Psychiatry, 3, 112–116.
Gresswell, I., Lally, L., Adamis, D. and McCarthy, G. 53 Irish family carers, Dementia or other Quantitative
M. (2018). Widening the net: exploring social deter- unspecified chronic illness
minants of burden of informal carers. Irish Journal of
Psychological Medicine, 35, 43–51.
McAuliffe, L., Ong, B. and Kinsella, G. (2018). 134 family caregivers Dementia Quantitative
Mediators of burden and depression in dementia
family caregivers: kinship differences. Dementia.
Stadtmann, M. P., Maercker, A., Binder, J. and 17 self-declared ‘relatives’ Complex post- Qualitative
Schnepp, W. (2018). Mastering life together-symp- traumatic stress
tom management, views, and experiences of relatives disorder
of persons with CPTSD: a grounded theory study.
Journal of Patient-Reported Outcomes, 2, 1–13.
Vi~
nas-Diez, V., Turró-Garriga, O., Portellano-Ortiz, 275 Alzheimer’s disease Alzheimer Quantitative
C., Gascón-Bayarri, J., Re~ne-Ramırez, R., Garre- family primary
Olmo, J. et al. (2017). Kinship and cohabitation in caregivers
relation to caregiver burden in the context of
Alzheimer’s disease: a 24-month longitudinal study.
International Journal of Geriatric Psychiatry, 32,
e72–e82.
Chow, E. O. W. and Ho, H. C. (2015). Caregiver 112 spousal caregivers Not specified Quantitative
strain, age, and psychological well-being of older aged 55 and over in
spousal caregivers in Hong Kong. Journal of Social Hong Kong
Work, 15, 479–497.
Tuomola, J., Soon, J., Fisher, P. and Yap, P. (2016). 6 Chinese female spousal Dementia Qualitative
Lived experience of caregivers of persons with de- caregivers
mentia and the impact on their sense of self: a quali-
tative study in Singapore. Journal of Cross-Cultural
Gerontology, 31, 157–172.
Mausbach, B. T., Chattillion, E. A., Ho, J., Flynn, L. 126 spousal Alzheimer’s Alzheimer Quantitative
M., Tiznado, D., von Känel, R. et al. (2014). Why disease family
does placement of persons with Alzheimer’s disease caregivers
into long-term care improve caregivers’ well-being?
Examination of psychological mediators. Psychology
and Aging, 29(4), 776.
Williams, K. L., Morrison, V. and Robinson, C. A. 13 family caregivers Stroke and Qualitative
(2014). Exploring caregiving experiences: caregiver dementia
coping and making sense of illness. Aging & Mental
Health, 18, 600–609.
Abu Bakar, S. H., Weatherley, R., Omar, N., Abdullah, 175 family caregivers Unspecified Quantitative
F. and Mohamad Aun, N. S. (2014). Projecting social (chronically ill/
support needs of informal caregivers in Malaysia. disability)
Health & Social Care in the Community, 22,
144–154.

(continued)
The impact of caring for family members with mental illnesses 11

Table 2: (Continued)
References Participants Disease Method

Orpin, P., Stirling, C., Hetherington, S. and Robinson, 18 rural primary Dementia Qualitative
A. (2014). Rural dementia carers: formal and caregivers (unspecified)
informal sources of support. Ageing & Society,
34(2), 185–208.
Gibbons, C., Creese, J., Tran, M., Brazil, K., Chambers, 65 spouses (husbands/ Dementia quantitative
L., Weaver, B. and Bedard, M. (2014). The psycho- wives) caring for

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logical and health consequences of caring for a someone with
spouse with dementia: a critical comparison of Alzheimer’s disease
husbands and wives. Journal of Women & Aging, 26,
3–21.
Daley, R. T., Sugarman, M. A., Shirk, S. D. and 28 spousal caregivers and Alzheimer’s Quantitative
O’Connor, M. K. (2018). Spared emotional percep- 30 controls
tion in patients with Alzheimer’s disease is associated
with negative caregiver outcomes. Aging & Mental
Health, 22(5), 595–602.
van Groenou, M. I. B., de Boer, A. and Iedema, J. 1685 Dutch family Multiple Quantitative
(2013). Positive and negative evaluation of caregiving caregivers
among three different types of informal care relation-
ships. European Journal of Ageing, 10, 301–311.
Alpass, F., Pond, R., Stephens, C., Stevenson, B., 2155 New Zealand Unspecified Quantitative
Keeling, S. and Towers, A. (2013). The influence of family carers
ethnicity and gender on caregiver health in older
New Zealanders. Journals of Gerontology Series B:
Psychological Sciences and Social Sciences, 68,
783–793.
Slachevsky, A., Budinich, M., Miranda-Castillo, C., 292 Chilean family Dementia Quantitative
Nú~nez-Huasaf, J., Silva, J. R., Mu~
noz-Neira, C. et al. caregivers
(2013). The CUIDEME Study: determinants of bur-
den in Chilean primary caregivers of patients with de-
mentia. Journal of Alzheimer’s Disease, 35(2),
297–306.
Pöysti, M. M., Laakkonen, M. L., Strandberg, T., 335 dyads of wife– Dementia Quantitative
Savikko, N., Tilvis, R. S., Eloniemi-Sulkava, U. and husband caregivers
Pitkälä, K. H. (2012). Gender differences in dementia
spousal caregiving. International Journal of
Alzheimer’s Disease, 2012, 162960.
Quinn, C., Clare, L. and Woods, R. T. (2012). What 447 informal caregivers Dementia Quantitative
predicts whether caregivers of people with dementia
find meaning in their role? International Journal of
Geriatric Psychiatry, 27(11), 1195–1202.
Lai, D. W. (2012). Effect of financial costs on caregiv- 448 informal caregivers Unspecified Quantitative
ing burden of family caregivers of older adults. Sage
Open, 2(4), 2158244012470467.
Tsai, C.-F., Hwang, W.-S., Lee, J.-J., Wang, W.-F., 328 informal caregiver– Dementia Quantitative
Huang, L.-C., Huang, L.-K. et al. (2021) Predictors patient dyads.
of caregiver burden in aged caregivers of demented
older patients. BMC Geriatrics, 21, 1–9.
Papastavrou, E., Charalambous, A., Tsangari, H. and 410 family caregivers Cancer, Quantitative
Karayiannis, G. (2012). The burdensome and depres- Schizophrenia,
sive experience of caring: what cancer, schizophrenia, and Alzheimer
and Alzheimer’s disease caregivers have in common.
Cancer Nursing, 35, 187–194.

(continued)
12 R. Phillips et al.

Table 2: (Continued)
References Participants Disease Method

Clare, L., Nelis, S. M., Whitaker, C. J., Martyr, A., 54 spousal caregivers and Dementia Quantitative
Markova, I. S., Roth, I. et al. (2012). Marital rela- 54 control couples
tionship quality in early-stage dementia: perspectives
from people with dementia and their spouses.
Alzheimer Disease & Associated Disorders, 26,
148–158.

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Shanley, C., Russell, C., Middleton, H. and Simpson- 15 informal carers End-stage Quantitative
Young, V. (2011). Living through end-stage demen- dementia
tia: the experiences and expressed needs of family
carers. Dementia, 10, 325–340.
Papastavrou, E., Tsangari, H., Karayiannis, G., 172 Greek family Dementia Quantitative
Papacostas, S., Efstathiou, G. and Sourtzi, P. (2011). caregivers
Caring and coping: the dementia caregivers. Aging &
Mental Health, 15, 702–711.
Innes, A., Abela, S. and Scerri, C. (2011). The organisa- 17 family caregivers from Dementia Qualitative
tion of dementia care by families in Malta: the expe- Malta
riences of family caregivers. Dementia, 10, 165–184.
Nordtug, B. and Holen, A. (2011). Similarities and dif- 206 Norwegian spousal Chronic obstruc- Quantitative
ferences in caring burden of home dwellers with part- carers tive pulmonary
ners suffering from chronic obstructive pulmonary disease (COPD)
disease or dementia. Home Health Care or dementia
Management & Practice, 23, 93–101.
Lai, D. W. and Thomson, C. (2011). The impact of per- 340 Canadian family Unspecified Quantitative
ceived adequacy of social support on caregiving bur- caregivers aged above
den of family caregivers. Families in Society, 92, 65
99–106.
Stanley, S., Balakrishnan, S. and Ilangovan, S. (2017). 75 primary family care- Schizophrenia Quantitative
Psychological distress, perceived burden and quality givers of persons with cross-sectional
of life in caregivers of persons with schizophrenia. schizophrenia in India design and
Journal of Mental Health, 26, 134–141. survey
Baker, K. L., Robertson, N. and Connelly, D. (2010). 70 male caregivers Dementia Quantitative
Men caring for wives or partners with dementia:
masculinity, strain and gain. Aging & Mental
Health, 14, 319–327.
Papastavrou, E., Tsangari, H., Kalokerinou, A., 172 Cyprus family pri- Dementia Quantitative
Papacostas, S. S. and Sourtzi, P. (2009). Gender mary caregivers
issues in caring for demented relatives. Health
Science Journal, 3, 41–53.
Arango Lasprilla, J. C., Moreno, A., Rogers, H. and 73 Colombian family Dementia Quantitative
Francis, K. (2009). The effect of dementia patient’s caregivers
physical, cognitive, and emotional/behavioral prob-
lems on caregiver well-being: findings from a
Spanish-speaking sample from Colombia, South
America. American Journal of Alzheimer’s Disease &
Other Dementias, 24, 384–395.
Sun, F., Lee Roff, L., Klemmack, D. and Burgio, L. D. 720 family caregivers Alzheimer Quantitative
(2008). The influences of gender and religiousness on
Alzheimer disease caregivers’ use of informal support
and formal services. Journal of Aging and Health,
20, 937–953.
Quinn, C., Clare, L., Pearce, A. and Van Dijkhuizen, 34 spouses or partners of Early stages of Qualitative
M. (2008). The experience of providing care in the people with a diagnosis dementia
early stages of dementia: an interpretative phenome- of early-stage dementia
nological analysis. Aging and Mental Health, 12,
769–778.

(continued)
The impact of caring for family members with mental illnesses 13

Table 2: (Continued)
References Participants Disease Method

Brown, J. and Chen, S. L. (2008). Help-seeking patterns 20 spousal caregivers Dementia Qualitative
of older spousal caregivers of older adults with de-
mentia. Issues in Mental Health Nursing, 29,
839–852.
Dahlberg, L., Demack, S., and Bambra, C. (2007). Age a 3% random sample of Unspecified Quantitative
and gender of informal carers: a population-based the 2001 UK Census.

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study in the UK. Health & Social Care in the The sample size was 1
Community, 15, 439–445. 825 595. Of this sam-
ple, 10% were reported
to be carers.
Ducharme, F., Levesque, L., Zarit, S. H., Lachance, L. 232 older husband Unspecified Quantitative,
and Giroux, F. (2007). Changes in health outcomes caregivers longitudinal
among older husband caregivers: a one-year longitu-
dinal study. The International Journal of Aging and
Human Development, 65, 73–96.
Calasanti, T. and Bowen, M. E. (2006). Spousal care- 22 primary spousal Alzheimer Qualitative
giving and crossing gender boundaries: maintaining caregivers
gendered identities. Journal of Aging Studies, 20,
253–263.
Adams, K. B., Smyth, K. A. and McClendon, M. J. 441 caregivers and 251 Alzheimer Quantitative
(2005). Psychosocial resources as moderators of the Non-caregivers
impact of spousal dementia caregiving on depression.
Journal of Applied Gerontology, 24, 475–489.
Malhotra, C., Malhotra, R., Østbye, T., Matchar, D. 1190 dyads caregivers Multiple Quantitative
and Chan, A. (2012). Depressive symptoms among and receivers
informal caregivers of older adults: insights from the
Singapore Survey on Informal Caregiving.
International Psychogeriatrics, 24, 1335–1346.
Gaugler, J. E., Anderson, K. A., Leach, C. R., Smith, C. 694 informal caregivers Dementia Quantitative
D., Schmitt, F. A. and Mendiondo, M. (2004). The
emotional ramifications of unmet need in dementia
caregiving. American Journal of Alzheimer’s Disease
& Other Dementias, 19, 369–380.
Beeson, R. A. (2003). Loneliness and depression in 49 Alzheimer spousal Alzheimer Quantitative
spousal caregivers of those with Alzheimer’s disease carers (AD) and 52
versus non-caregiving spouses. Archives of spousal non-caregivers
Psychiatric Nursing, 17, 135–143.
Perry, J. (2002). Wives giving care to husbands with 20 spousal carers (wives) Alzheimer Qualitative
Alzheimer’s disease: a process of interpretive caring.
Research in Nursing & Health, 25, 307–316.
Chow, E. O. W. and Ho, H. C. (2015). Caregiver 112 spousal caregivers Not specified Quantitative
strain, age, and psychological well-being of older from Hong Kong
spousal caregivers in Hong Kong. Journal of Social
Work, 15, 479–497.
Gonçalves-Pereira, M., Carmo, I., da Silva, J. A., 99 primary caregivers Dementia Quantitative
Papoila, A. L., Mateos, R. and Zarit, S. H. (2010).
Caregiving experiences and knowledge about demen-
tia in Portuguese clinical outpatient settings.
International Psychogeriatrics, 22, 270–280.
Gresswell, I., Lally, L., Adamis, D. and McCarthy, G. 53 carers Ireland Not specified Quantitative
M. (2018). Widening the net: exploring social deter-
minants of burden of informal carers. Irish Journal of
Psychological Medicine, 35, 43–51.

(continued)
14 R. Phillips et al.

Table 2: (Continued)
References Participants Disease Method

Shikimoto, R., Sado, M., Ninomiya, A., Yoshimura, K., Japan, 1437 people with Dementia Quantitative
Ikeda, B., Baba, T. et al. (2018). Predictive factors as- dementia-caregiver
sociated with psychological distress of caregivers of dyads
people with dementia in Japan: a cross-sectional
study. International Psychogeriatrics, 30,
1089–1098.

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Temple, J. B. and Dow, B. (2018). The unmet support 25 555 primary carers Multiple Quantitative
needs of carers of older Australians: prevalence and Australia
mental health. International Psychogeriatrics, 30,
1849–1860.
Collins, C. and Jones, R. (1997). Emotional distress and 48 UK spousal carers Dementia Quantitative
morbidity in dementia carers: a matched comparison
of husbands and wives. International Journal of
Geriatric Psychiatry, 12, 1168–1173.
Luderowski, A. and Boden, Z. V. (2020). Love and in- 10 UK informal carer for Psychosis Qualitative
comprehensibility: the hermeneutic labour of caring someone experiencing
for and understanding a loved one with psychosis. psychosis
Health, 24, 737–754.
Wayland, S., Coker, S. and Maple, M. (2021). The hu- 758 family carers of Suicide Mixed
man approach to supportive interventions: the lived someone who has
experience of people who care for others who suicide attempted suicide
attempt. International Journal of Mental Health
Nursing, 30, 667–682.
Vasileiou, K., Barnett, J., Barreto, M., Vines, J., 16 family caregivers Mixed (dementia, Qualitative
Atkinson, M., Lawson, S. et al. (2017) Experiences frailty due to
of loneliness associated with being an informal care- old age,
giver: a qualitative investigation. Frontiers in multiple
Psychology, 8, 585. sclerosis, de-
pression,
autism)
Östman, M., Wallsten, T. and Kjellin, L. (2005). 455 close relatives Psychoses, Quantitative
Family burden and relatives’ participation in psychi- caregivers affective
atric care: are the patient’s diagnosis and the relation disorders and
to the patient of importance? International Journal ‘other
of Social Psychiatry, 51, 291–301. diagnoses’
McGaw, V. E., Reupert, A. E. and Maybery, D. (2020). 8 female partner care- PTSD Qualitative
Partners of veterans with PTSD: parenting and family givers of Australian
experiences. Families in Society, 101, 456–468. veterans
Roth, D. L., Dilworth-Anderson, P., Huang, J., Gross, 642 family caregivers Dementia Quantitative
A. L. and Gitlin, L. N. (2015). Positive aspects of
family caregiving for dementia: differential item func-
tioning by race. Journals of Gerontology Series B:
Psychological Sciences and Social Sciences, 70,
813–819.
Brown, S. L., Smith, D. M., Schulz, R., Kabeto, M. U., 3376 family caregivers Multiple Quantitative
Ubel, P. A., Poulin, M., et al. (2009). Caregiving be-
havior is associated with decreased mortality risk.
Psychological Science, 20, 488–494.
O’Reilly, D., Connolly, S., Rosato, M. and Patterson, Health of caregivers Multiple Quantitative
C. (2008). Is caring associated with an increased risk recorded in the 2001
of mortality? A longitudinal study. Social Science & Northern Ireland
Medicine, 67, 1282–1290. Census

(continued)
The impact of caring for family members with mental illnesses 15

Table 2: (Continued)
References Participants Disease Method

Roth, D. L., Perkins, M., Wadley, V. G., Temple, E. M. 43 099 family caregivers Multiple Quantitative
and Haley, W. E. (2009). Family caregiving and emo-
tional strain: associations with quality of life in a
large national sample of middle-aged and older
adults. Quality of Life Research, 18, 679–688.
Dilworth-Anderson, P., Brummett, B. H., Goodwin, P., 48 African American and Multiple Quantitative

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Williams, S. W., Williams, R. B. and Siegler, I. C. 121 White caregivers.
(2005). Effect of race on cultural justifications for
caregiving. The Journals of Gerontology Series B:
Psychological Sciences and Social Sciences, 60,
S257–S262.
McCallum, T. J., Sorocco, K. H. and Fritsch, T. (2006). 30 African American and Dementia Quantitative
Mental health and diurnal salivary cortisol patterns 24 European American
among African American and European American female dementia family
female dementia family caregivers. The American caregivers and 48
Journal of Geriatric Psychiatry, 14, 684–693. African American and
15 European American
non-caregivers

This poses additional problems as financial uncertainty bring balance to this point of view. A total of 16 studies
contributes to clinically significant levels of distress, (17.39%) in this review investigated the full range of
caregiver burden and depression among family carers caregiving experiences, including potential positive
(Lai, 2012; Abu Bakar et al., 2014; Temple and Dow, aspects and benefits of caregiving. Essentially, caregiving
2018; Wayland et al., 2021). Therefore, spouses may be can be a rewarding experience that facilitates personal
at risk of compromising their own wellbeing when deliv- growth, maturity and resilience (Netto et al., 2009;
ering primary care, due to greater emotional and finan- Sánchez-Izquierdo et al., 2015; Quinn et al., 2015) with
cial strain. population-based surveys indicating that caregiving may
Another key determinant in the prediction of family relate to significantly reduced all-cause mortality rates
carer’s wellbeing is age. Studies in this review suggest in comparison to a matched sample of non-caregivers
that challenging experiences in relation to family caring (Brown et al., 2009; O’Reilly et al., 2008). Caregivers
were perceived to be more difficult or worse for older often report feeling gratitude and a sense of mastery,
carers (Chiang et al., 2015; Chow and Ho, 2015: Tsai meaningfulness and coherence in their existence (Cohen
et al., 2021). Essentially, elderly family carers may not et al., 2002; Quinn et al., 2012; Cheng et al., 2017).
understand mental health issues or have the stamina re- Therefore, the findings that suggest positive aspects of
quired to overcome the challenges of caring, for example caregiving to be inversely related to burden and depres-
accessing formal support (Chiang et al., 2015; sion are unsurprising [i.e. (Hilgeman et al., 2007)].
Greenwood et al., 2019). In addition, their own health Theoretical models offer different explanations to
conditions can compromise the ability to perform physi- understand these positive changes in the caregiver’s life.
cal tasks, and thus diminish their social circle. Potential For example, the adaption stress and coping model
sources of social support can also decrease with age, (Folkman, 1997), suggests that positive psychological
while their own health conditions can make it harder to states are associated with finding positive meaning in
leave their home, and engage in leisure activities or adversity, and helping the individual to make sense of
make new friends. the situation. This can result in the caregiver identifying
positive changes in their life (Park, 2010). Fredrickson
Positive implications of caring for family et al. (Fredrickson et al., 2003) take a similar approach
members with mental health diseases in their broaden-and-build theory by suggesting that
While most literature examines the negative psychologi- positive emotions contribute to cognitive broadening,
cal and physical consequences of caregiving on the carer, which then widens the individual’s attention, thinking
there is an increasing emphasis on the positives that and behaviour. This broadening effect helps foster a
16 R. Phillips et al.

Table 3: Summary of themes and key results

Theme: name Theme: description Theme: prevalence Example: article

Negative Implications of Studies that provide qualita- 54.24% of articles described Vi~
nas-Diez, V., Turró-
Caring for Family Members tive or quantitative evidence adverse physical and/or psy- Garriga, O., Portellano-
with Mental Health for adverse physical and/or chological consequences of Ortiz, C., Gascón-Bayarri,
Diseases psychological consequences family caregiving J., Re~
ne-Ramırez, R.,
of family caregiving are in- Garre-Olmo, J., et al.
cluded in this theme. (2017). Kinship and cohabi-

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Examples for adverse physi- tation in relation to care-
cal and/or psychological giver burden in the context
consequences are e.g. de- of Alzheimer’s disease: a
pression, burden of care, 24-month longitudinal
muscular dystrophy, disc study. International Journal
prolapses, increased mortal- of Geriatric Psychiatry, 32,
ity rates, etc. e72–e82.
Positive Implications of Studies that provide qualita- 17.39% of articles investi- Quinn, C., Clare, L. and
Caring for Family Members tive or quantitative evidence gated positive and beneficial Woods, R. T. (2012). What
with Mental Health for beneficial physical and/ effects of family caregiving. predicts whether caregivers
Diseases or psychological consequen- of people with dementia
ces of family caregiving are find meaning in their role?
included in this theme. International Journal of
Examples for beneficial Geriatric Psychiatry, 27,
physical and/or psychologi- 1195–1202.
cal consequences are e.g.
personal growth, maturity,
increased resilience, reduced
all-cause mortality rates,
etc.
Moderating Factors that can Studies that examine factors A total of 47.82% examined Temple, J. B. and Dow, B.
Contribute to the Family that contribute to family how moderating factors (2018). The unmet support
Carer’s Wellbeing caregivers’ wellbeing and contribute to family care- needs of carers of older
family caregivers’ needs are givers’ wellbeing. Australians: prevalence and
included in this theme. mental health. International
Examples for unmet needs Psychogeriatrics, 30, 1849–
are physical, social and fi- 1860.
nancial support.

range of adaptive and durable personal resources that positive caregiving outcomes associated with active cop-
contribute to the development of resilience (Fredrickson, ing styles and greater resilience in comparison to
2004). Similarly, theories that are based on benefit- Caucasians (Dilworth-Anderson et al., 2005; McCallum
finding imply that adaptive coping emerges over time as et al., 2006; Merritt et al., 2011). This is consistent with
a way of responding to stressful circumstances. This ena- studies in which African American family caregivers
bles personal growth and fosters resilience. were less affected by depression, caregiver burden and
In addition to situational and personal factors, litera- strain than white family caregivers (Haley et al., 2004).
ture indicates that adaptive coping also depends upon A study by Roth et al. (2015) also found that African
demographic characteristics. For example, caregiver per- American family carers felt more capable at appreciating
sonality characteristics such as extraversion and agree- and developing a positive attitude towards life when
ableness along with social support (especially support compared to Caucasians. This positive attitude towards
from loved ones) are associated with positive aspects of care is explained as a reflection of long-standing tradi-
caregiving (Koerner et al., 2009). Ethnicity can also im- tions of the African American community. This attitude
pact on the experience of positive aspects in caregiving. is cultivated in early life through racial socialization and
Studies show that African Americans report more maintained in adulthood life through spiritual and
The impact of caring for family members with mental illnesses 17

cultural beliefs, especially when facing adversities or of strength and a sense of mastery in one’s predicament
overcoming hardships (McLoyd et al., 2005). Roff et al. (Shanley et al., 2011). Peer support groups may be par-
(2004) outlined similar findings but added that religios- ticularly relevant in reducing the burden of care by pro-
ity partially mediates the relationship between ethnicity viding the family carer with a feeling of social
and the elevated positive attitudes in caregiving among connectedness with individuals who share similar expe-
African Americans. Although symptoms of depression riences (Shanley et al., 2011). In addition, peer support
were not associated with baseline levels of positive groups give family carers the space and opportunity to
aspects in caregiving, Roff et al. (Roff et al., 2004) found reflect on their own caring routine, helping them cope

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that lower anxiety levels, less worrying and lower socio- more effectively with the competing demands of care
economic status among African American caregivers (Stanley et al., 2017).
contributed to higher levels of positive aspects in care- In addition to peer support groups, research suggests
giving. In conclusion, positive aspects of caregiving may that smartphone technologies (i.e. applications) can help
be related to coping and having a more optimistic out- improve and maintain family carers’ physical and men-
look on life. tal health. For example, Casarez et al. (Casarez et al.,
2019) report that using mental health (mHealth) apps
Moderating factors that can contribute to the leads to a reduction of carer burden and distress and an
family carers’ wellbeing increase in social contacts. They not only improve the
A total of 44 studies (47.82%) suggest that tailored relationship between carer and care-receiver but help
them to manage the administration of medication and
means of support are pivotal in improving family carers’
contribute to mental health literacy. Specifically,
physical and mental wellbeing. Here, a particular focus
mHealth apps can provide information for family carers
is placed on examining the individual needs of the family
on how to manage symptoms of mental health disorders,
caregiver and how these may be addressed (Temple and
what to do in difficult situations, provide constructive
Dow, 2018). Findings from the review suggest that the
practices and alert users to the need for professional
most prevalent types of unmet needs include financial,
interventions. This is important because information
physical and social support [i.e. (Highet et al., 2005;
about mental health symptoms can foster an under-
Temple and Dow, 2018; Brickell et al., 2019; Casarez
standing of the care receivers’ experiences and reduce
et al., 2019; Jones et al., 2019; Alasmee and Hasan,
burden and distress in caregivers [i.e. (Vasileiou et al.,
2020; Anchan and Janardhana, 2020; Brites et al., 2020;
2017; Brickell et al., 2019; Casarez et al., 2019; Jones
Lai et al., 2020; Teles et al., 2021)]. Temple and Dow’s
et al., 2019; Alasmee and Hasan, 2020; Anchan and
(2018) findings indicate that having any unmet needs for
Janardhana, 2020; Hahn et al., 2020; Lai et al., 2020;
support increased the likelihood of the carer experienc-
McGaw et al., 2020; Wayland et al., 2021)]. However,
ing psychological distress two-fold. With each successive while mental health literacy is crucial in improving care-
unmet need for support, the odds of psychological dis- giver wellbeing, studies have found that in certain situa-
tress increased another 1.37 times. Therefore, besides tions, carers are not interested in information about the
the previously discussed negative effect of financial bur- mental health illness of the care receiver (Williams et al.,
den (7 studies; 7.61%), maintaining social connections 2014). Rather, Williams et al. (Williams et al., 2014)
(17 studies; 18.48%) and receiving professional or social suggests that caregivers adopt active information-
support (16 studies; 17.39%), unmet needs are key fac- seeking techniques to not only deal with current prob-
tors in understanding and addressing the carer’s physical lems and to increase their sense of control, but avoid
and psychological wellbeing. considering future logistics of caregiving when they feel
Increasing social resources was found to reduce the helpless or overwhelmed with stress. Thus, caregiving
risk of suffering from poor mental health in family care- stressors affect the extent to which caregivers may ade-
givers for patients with different mental illnesses quately utilize the information and service provisions
(Gaugler et al., 2004; Griffin et al., 2017; Otero et al., available. In conclusion, for them to be effective, resour-
2019). This may be explained by feelings of social con- ces must be tailored to the caregivers’ individual needs.
nectedness counteracting the effects of loneliness and so- Importantly, cultural differences need to be taken
cial isolation that are associated with depression and into consideration when tailoring support [i.e. (Sun
depressive symptoms in family carers (Beeson, 2003; et al., 2008; Chow and Ho, 2015; Meyer et al., 2015;
Vasileiou et al., 2017; McAuliffe et al., 2018). In this Tuomola et al., 2016; Mahomed and Pretorius, 2020;
sense, empathy and social connections with family and Kabitsi and Powers, 2002)]. This review suggests that
friends as well as healthcare staff can provide a source cultural differences impact on patterns of help-seeking
18 R. Phillips et al.

behaviour, access to sources of formal and informal sup- may depend upon a combination of situational and soci-
port, the search for information about the mental illness odemographic characteristics.
and the motivation to provide family care (Kabitsi and The review identified elderly, female and spousal
Powers, 2002; Mahomed and Pretorius, 2020). For ex- primary-caregivers as a group who are at risk of
ample, Mahomed and Pretorius (Mahomed and experiencing mental and physical health. Primary care-
Pretorius, 2020) found that male South Africans in low- givers, in comparison to secondary caregivers, suffer
income communities utilize a collective approach to- higher levels of distress, have less leisure time and
wards caregiving, relying on wider informal social net- smaller social circles. In addition, the findings indicate

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works instead of institutional and formal care services. that there are gender differences that also need to be
Similar results were evident in studies that compared taken into consideration. The scoping review found that
motives for family caregiving in Greece and America female spousal carers may view caring for their partner
(Kabitsi and Powers, 2002). This study found that as their duty, try to be less dependent on support from
Greek and American carers were motivated by different others and take on multiple roles to fill the gaps that the
factors. Greek families understood themselves in a more mental illness of their partner has caused in comparison
relational and largely family-interwoven frame, while to their male counterparts, In doing so, female spousal
American family carers were more motivated by finan- carers may experience higher levels of distress and care-
cial reasons to provide family care. It can therefore be giver burden than male family caregivers. Spousal family
caregivers often give up their work. This is linked to fi-
concluded that cultural differences in caregiving motiva-
nancial uncertainty and elevated levels of distress and
tions may result in adaptive or maladaptive outcomes
depressive symptoms. In this sense, it is possible that
for the caregiver and care receiver. Here, studies suggest
some factors associated with caring for family members
that cultural and religious values often correlate and
such as limited temporal resources may contribute to
overlap with one another. Several studies outlined the
and trigger further stressors such as financial uncer-
importance of religion and spirituality in helping family
tainty. Similarly, elderly family caregivers tend to expe-
caregivers to manage the stress of caregiving [i.e. (Meyer
rience lower levels of wellbeing as they often do not
et al., 2015; Robinson-Lane et al., 2021)]. For example,
have the stamina required for caring responsibilities,
Tuomola et al. (Tuomola et al., 2016), Chan (Chan,
and experience diminishing social circles besides suffer-
2010) and Hinton et al. (Hinton et al., 2008) outlined
ing from their own health issues. Therefore, the results
how Confucian principles that highlight the importance
suggest that for older caregivers, there are a range of un-
of closeness between family members are reflected in derlying stressors that decrease the individual’s overall
family carers’ reasoning processes. By drawing on the quality of life and life satisfaction while increasing the
collectivistic cultures of East Asia that espouse a set of burden of care.
values and beliefs which promote maintenance of har- Nevertheless, caregiving can also be a rewarding ex-
mony with individuals and with the environment, family perience that fosters meaning, resilience and personal
carers could overcome obstacles and emotional difficul- growth in the caregiver. Therefore, the present results
ties. Similar results are supported in Meyer et al.’s suggest that the negative effects of caregiving can be bal-
(Meyer et al., 2015) examination of Christian family anced by the individuals’ personality, social support, re-
carers who relied on their faith to cope with challenging ligiosity and culture. Specifically, high levels of
situations. Community support and doctrinal beliefs agreeableness and extraversion in combination with so-
about God’s will helped caregivers to cope with distress cial support relate to lower levels of caregiver stress and
and burden. In conclusion, the studies presented in this burden. Social resources were found to play a particu-
review suggest that it may be valuable to include an un- larly important role because support from peers counter-
derstanding of cultural values and an individual’s spiri- acts the loneliness and isolation that can lead to
tuality and religion as components of tailored means of depression. In this sense, social resources combined with
support for family caregivers. personality traits and social skills may be important in
maintaining life satisfaction and quality of life. Also,
positive attitudes towards life coupled with religious or
DISCUSSION AND CONCLUSION spiritual beliefs helped improve the family caregivers’
This scoping review was conducted to understand the wellbeing because spirituality and religiosity provide a
effects of caring for family members with mental health framework through which caregiving experiences can be
illnesses on caregivers’ wellbeing. The findings suggest interpreted in meaningful ways. This supports the idea
that mental and physical wellbeing of family caregivers that the meaningful interpretation of one’s circumstances
The impact of caring for family members with mental illnesses 19

is an important skill that can help give family caregivers a REFERENCES

positive outlook on their life and understand difficult cir- Abraham, A., Sommerhalder, K. and Abel, T. (2010) Landscape
cumstances through multiple perspectives. and well-being: a scoping study on the health-promoting im-
However, despite the findings from this review, pact of outdoor environments. International Journal of
several limitations need to be taken into consider- Public Health, 55, 59–69.
ation. The present review did not examine demands, Abu Bakar, S. H., Weatherley, R., Omar, N., Abdullah, F. and
capabilities and meaning at the community level, nor Mohamad Aun, N. S. (2014) Projecting social support needs
of informal caregivers in Malaysia. Health & Social Care in
did it consider the care receiver’s adaptation and ad-
the Community, 22, 144–154.

Downloaded from https://academic.oup.com/heapro/article/38/3/daac049/6574394 by guest on 08 December 2023

justment to their mental illness. The scoping review
Agenagnew, L. and Kassaw, C. (2020) The lifetime prevalence
did not seek to assess the studies included regarding and factors associated with relapse among mentally ill
their quality or effect sizes. We also acknowledge that patients at Jimma University Medical Center, Ethiopia: cross
the sample of articles is skewed towards the challenges sectional study. Journal of Psychosocial Rehabilitation and
and demands of family caregivers for dementia (38 Mental Health, 7, 211–220.
articles, 41.3%) and Alzheimer patients (13 articles, Akbari, M., Alavi, M., Irajpour, A. and Maghsoudi, J. (2018)
14.13%). While the scholarship reviewed suggests Challenges of family caregivers of patients with mental dis-
orders in Iran: a narrative review. Iranian Journal of
that there is little difference in caregiver experience
Nursing and Midwifery Research, 23, 329–337.
between conditions, it may still be possible that other Alasmee, N. and Hasan, A. A. (2020) Primary caregivers experi-
unique aspects of the caregiver experiences in relation ence of anti-psychotic medication: a qualitative study.
to other mental health illnesses have not been covered. Archives of Psychiatric Nursing, 34, 520–528.
In this sense, the present review included caregivers of Ali, S., Rhodes, L., Moreea, O., McMillan, D., Gilbody, S.,
individuals with different pathologies but did not nec- Leach, C. et al. (2017) How durable is the effect of low in-
essarily differentiate between their experiences. tensity CBT for depression and anxiety? Remission and re-
lapse in a longitudinal cohort study. Behaviour Research
Future research may therefore wish to focus on the
and Therapy, 94, 1–8.
experiences of family caregivers looking after an indi-
Amagai, M., Takahashi, M., & Amagai, F., (2016) Qualitative
vidual with specific mental health conditions such as study of resilience of family caregivers for patients with
depression or schizophrenia. In addition, as the care schizophrenia in Japan. Age (Years), 63, 55–74.
receiver’s health can also influence the caregiver’s Anchan, V. and Janardhana, N. (2020) Transformation of atti-
quality of life, only few studies in the review discussed tude through brief psychoeducation program for the hus-
the caregivers’ overall quality of life. This is problem- bands of women with postpartum psychiatric disorders.
atic as it remains unclear whether the caregiver has Asian Journal of Psychiatry, 51, 101841.
Arksey, H. and O’Malley, L. (2005) Scoping studies: towards a
lower self-rated quality of life besides scoring high on
methodological framework. International Journal of Social
e.g. caregiver burden, and caregiver distress. This limi- Research Methodology, 8, 19–32.
tation can be addressed in future reviews focussing on Avdikou, K., Stefanatos, C., Tsatali, M., Gouva, M. and
examining and comparing specific measures such as Tsolaki, M. (2019) The role of gender in shame, hostility,
self-rated quality of life. In addition, the scope of fu- and aggression experienced by caregivers for patients with
ture reviews could include research that examines dementia. American Journal of Alzheimer’s Disease &
interventions intending to improve family caregivers’ Other Dementias, 34, 231–235.
Beeson, R. A. (2003) Loneliness and depression in spousal care-
wellbeing.
givers of those with Alzheimer’s disease versus non-caregiving
Despite these limitations, the present review
spouses. Archives of Psychiatric Nursing, 17, 135–143.
achieved its research objective by providing an over- Brickell, T. A., Lippa, S. M., French, L. M., Gartner, R. L.,
view of how family caregiving affects the caregivers Driscoll, A. E., Wright, M. M. et al. (2019) Service needs
physical, mental and social wellbeing, and the best and health outcomes among caregivers of service members
ways to support family carers. While caregiving can and veterans following TBI. Rehabilitation Psychology, 64,
have a negative impact on the physical and mental 72–86.
wellbeing of the carer, specific sociodemographic, per- Brites, R., Brand~ ao, T., Moniz Pereira, F., Hipólito, J. and
Nunes, O. (2020) Effects of supporting patients with demen-
sonal and situational factors can work as a buffer.
tia: a study with dyads. Perspectives in Psychiatric Care, 56,
Therefore, support for family caregivers must be tai-
614–620.
lored to individual needs, taking into consideration Brown, J. and Chen, S. L. (2008) Help-seeking patterns of older
personality, particular circumstances, along with cul- spousal caregivers of older adults with dementia. Issues in
tural and personal beliefs. Mental Health Nursing, 29, 839–852.
20 R. Phillips et al.

Brown, S. L., Smith, D. M., Schulz, R., Kabeto, M. U., Ubel, P. Dahlberg, L., Demack, S. and Bambra, C. (2007) Age and gen-
A., Poulin, M. et al. (2009) Caregiving behavior is associ- der of informal carers: a population-based study in the UK.
ated with decreased mortality risk. Psychological Science, Health & Social Care in the Community, 15, 439–445.
20, 488–494. Dilworth-Anderson, P., Brummett, B. H., Goodwin, P.,
Bruffaerts, R., Demyttenaere, K., Kessler, R. C., Tachimori, H., Williams, S. W., Williams, R. B. and Siegler, I. C. (2005)
Bunting, B., Hu, C. et al. (2015) The associations between Effect of race on cultural justifications for caregiving. The
preexisting mental disorders and subsequent onset of Journals of Gerontology: Series B, 60, S257–S262.
chronic headaches: a worldwide epidemiologic perspective. Donnellan, W. J., Bennett, K. M. and Soulsby, L. K. (2015)
The Journal of Pain, 16, 42–52. What are the factors that facilitate or hinder resilience in

Downloaded from https://academic.oup.com/heapro/article/38/3/daac049/6574394 by guest on 08 December 2023

Calasanti, T. and Bowen, M. E. (2006) Spousal caregiving and older spousal dementia carers? A qualitative study. Aging &
crossing gender boundaries: maintaining gendered identities. Mental Health, 19, 932–939.
Journal of Aging Studies, 20, 253–263. Fernando, S. (2014) Mental Health Worldwide: Culture,
Casarez, R. L., Barlow, E., Iyengar, S. M., Soares, J. C. and Globalization and Development. Springer, London.
Meyer, T. D. (2019) Understanding the role of m-Health to Folkman, S. (1997) Positive psychological states and coping
improve well-being in spouses of patients with bipolar disor- with severe stress. Social Science & Medicine (1982), 45,
der. Journal of Affective Disorders, 250, 391–396. 1207–1221.
Chan, S. W. C. (2010) Family caregiving in dementia: the Asian Fredrickson, B. L. (2004) The broaden-and-build theory of posi-
perspective of a global problem. Dementia and Geriatric tive emotions. Philosophical Transactions of the Royal
Cognitive Disorders, 30, 469–478. Society of London. Series B, Biological Sciences, 359,
Chang, Y. C. and Chou, F. H. C. (2015) Effects of home visit in- 1367–1378.
tervention on re-hospitalization rates in psychiatric patients. Fredrickson, B. L., Tugade, M. M., Waugh, C. E. and Larkin, G.
Community Mental Health Journal, 51, 598–605. R. (2003) What good are positive emotions in crises? A pro-
Cheng, S. T., Mak, E. P., Fung, H. H., Kwok, T., Lee, D. T. and spective study of resilience and emotions following the ter-
Lam, L. C. (2017) Benefit-finding and effect on caregiver de- rorist attacks on the United States on September 11th, 2001.
pression: a double-blind randomized controlled trial. Journal of Personality and Social Psychology, 84, 365–376.
Journal of Consulting and Clinical Psychology, 85, Gaugler, J. E., Anderson, K. A., Leach, C. R., Smith, C. D.,
521–529. Schmitt, F. A. and Mendiondo, M. (2004) The emotional
Chiang, C. Y., Lu, C. Y., Lin, Y. H., Lin, H. Y. and Sun, F. K. ramifications of unmet need in dementia caregiving.
(2015) Caring stress, suicidal attitude and suicide care abil- American Journal of Alzheimer’s Disease & Other
ity among family caregivers of suicidal individuals: a path Dementias, 19, 369–380.
analysis. Journal of Psychiatric and Mental Health Nursing, Gibbons, C., Creese, J., Tran, M., Brazil, K., Chambers, L.,
22, 792–800. Weaver, B. et al. (2014) The psychological and health conse-
Choi, H. (2018) Giving or receiving spouse care and marital sat- quences of caring for a spouse with dementia: a critical com-
isfaction among older Korean individuals. Social Science & parison of husbands and wives. Journal of Women & Aging,
Medicine. 26, 3–21.
Chow, E. O. W. and Ho, H. C. (2015) Caregiver strain, age, and Gonçalves-Pereira, M., Zarit, S. H., Cardoso, A. M., Alves da
psychological well-being of older spousal caregivers in Hong Silva, J., Papoila, A. L. and Mateos, R. (2020) A comparison
Kong. Journal of Social Work, 15, 479–497. of primary and secondary caregivers of persons with demen-
Cohen, C. A., Colantonio, A. and Vernich, L. (2002) Positive tia. Psychology and Aging, 35, 20–27.
aspects of caregiving: rounding out the caregiver experi- Greenwood, N., Pound, C., Brearley, S. and Smith, R. (2019) A
ence. International Journal of Geriatric Psychiatry, 17, qualitative study of older informal carers’ experiences and
184–188. perceptions of their caring role. Maturitas, 124, 1–7.
Colvez, A., Joel, M. E., Ponton-Sanchez, A. and Royer, A. C. Gresswell, I., Lally, L., Adamis, D. and McCarthy, G. M. (2018)
(2002) Health status and work burden of Alzheimer Widening the net: exploring social determinants of burden
patients’ informal caregivers: comparisons of five different of informal carers. Irish Journal of Psychological Medicine,
care programs in the European Union. Health Policy 35, 43–51.
(Amsterdam, Netherlands), 60, 219–233. Griffin, J. M., Lee, M. K., Bangerter, L. R., Van Houtven, C. H.,
Crellin, N. E., Orrell, M., McDermott, O. and Charlesworth, G. Friedemann-Sánchez, G., Phelan, S. M. et al. (2017) Burden
(2014) Self-efficacy and health-related quality of life in fam- and mental health among caregivers of veterans with trau-
ily carers of people with dementia: a systematic review. matic brain injury/polytrauma. The American Journal of
Aging & Mental Health, 18, 954–969. Orthopsychiatry, 87, 139–148.
Dadalto, E. V. and Cavalcante, F. G. (2021) The place of family Grover, S., Nehra, R., Malhotra, R. and Kate, N. (2017)
caregivers for older adults with Alzheimer’s disease: a litera- Positive aspects of caregiving experience among caregivers
ture review in Brazil and the United States. Ciência & Saúde of patients with dementia. East Asian Archives of
Coletiva, 26, 147–157. Psychiatry, 27, 7178.
The impact of caring for family members with mental illnesses 21

Hahn, E. A., Boileau, N. R., Hanks, R. A., Sander, A. M., review of service-user, family, and carer perspectives.
Miner, J. A. and Carlozzi, N. E. (2020) Health literacy, Journal of Mental Health (Abingdon, England), 30,
health outcomes, and the caregiver role in traumatic brain 619–633.
injury. Rehabilitation Psychology, 65, 401–408. Levac, D., Colquhoun, H. and O’Brien, K. K. (2010) Scoping
Halas, G., Schultz, A. S., Rothney, J., Goertzen, L., Wener, P. studies: advancing the methodology. Implementation
and Katz, A. (2015) A scoping review protocol to map the Science, 5, 1–9.
research foci trends in tobacco control over the last decade. Mahomed, A. and Pretorius, C. (2020) Availability and utiliza-
BMJ Open, 5, e006643. tion of support services for South African male caregivers of
Haley, W. E., Gitlin, L. N., Wisniewski, S. R., Mahoney, D. F., people with Alzheimer’s disease in low-income communi-

Downloaded from https://academic.oup.com/heapro/article/38/3/daac049/6574394 by guest on 08 December 2023

Coon, D. W., Winter, L. et al. (2004) Well-being, appraisal, ties. Dementia, 20, 633–652.
and coping in African-American and Caucasian dementia Malins, S., Biswas, S., Patel, S., Levene, J., Moghaddam, N. and
caregivers: findings from the REACH study. Aging & Morriss, R. (2020) Preventing relapse with personalized
Mental Health, 8, 316–329. smart-messaging after cognitive behavioural therapy: a
Hanna, F., Barbui, C., Dua, T., Lora, A., van Regteren Altena, proof-of-concept evaluation. British Journal of Clinical
M. and Saxena, S. (2018) Global mental health: how are we Psychology, 59, 241–259.
doing? World Psychiatry, 17, 367–368. Mausbach, B. T., Chattillion, E. A., Ho, J., Flynn, L. M.,
Highet, N., Thompson, M. and McNair, B. (2005) Identifying Tiznado, D., von Känel, R. et al. (2014) Why does place-
depression in a family member: the carers’ experience. ment of persons with Alzheimer’s disease into long-term
Journal of Affective Disorders, 87, 25–33. care improve caregivers’ well-being? Examination of psy-
Hilgeman, M. M., Allen, R. S., DeCoster, J. and Burgio, L. D. chological mediators. Psychology and Aging, 29, 776–786.
(2007) Positive aspects of caregiving as a moderator of treat- McAuliffe, L., Ong, B. and Kinsella, G. (2018) Mediators of bur-
ment outcome over 12 months. Psychology and Aging, 22, den and depression in dementia family caregivers: kinship
361–371. differences. Dementia.
Hinton, L., Tran, J. N., Tran, C. and Hinton, D. (2008) McCallum, T. J., Sorocco, K. H. and Fritsch, T. (2006) Mental
Religious and spiritual dimensions of the Vietnamese de- health and diurnal salivary cortisol patterns among African
mentia caregiving experience. Hallym International Journal American and European American female dementia family
of Aging: HIJA, 10, 139–160. caregivers. The American Journal of Geriatric Psychiatry,
Hsiao, C.-Y., Lu, H.-L. and Tsai, Y.-F. (2020) Caregiver burden 14, 684–693.
and health-related quality of life among primary family care- McGaw, V. E., Reupert, A. E. and Maybery, D. (2020) Partners
givers of individuals with schizophrenia: cross-sectional of veterans with PTSD: parenting and family experiences.
study. Quality of Life Research, 29, 2745–2757. Families in Society: The Journal of Contemporary Social
Jones, S. M., Woodward, M. and Mioshi, E. (2019) Social sup- Services, 101, 456–468.
port and high resilient coping in carers of people with de- McKee, R. G. (2020) Exploring Experiences of Family
mentia. Geriatric Nursing, 40, 584–589. Caregivers: The Relationship between Caregivers Perceived
Kabitsi, N. and Powers, D. V. (2002) Spousal motivations of Burden and the Disability of the Care Receiver. Southern
care for demented older adults: a cross-cultural comparison Connecticut State University, New Haven, US.
of Greek and American female caregivers. Journal of Aging McLoyd, V. C., Hill, N. E. and Dodge, K. A. (eds) (2005)
Studies, 16, 383–399. African American Family Life: Ecological and Cultural
Kate, N., Grover, S., Kulhara, P. and Nehra, R. (2013) Diversity. Guilford, New York, NY.
Caregiving appraisal in schizophrenia: a study from India. Melemis, S. M. (2015) Focus: addiction: relapse prevention and
Social Science & Medicine (1982), 98, 135–140. the five rules of recovery. The Yale Journal of Biology and
Koerner, S. S., Kenyon, D. B. and Shirai, Y. (2009) Caregiving Medicine, 88, 325–332.
for elder relatives: which caregivers experience personal ben- Merritt, M. M., McCallum, T. J. and Fritsch, T. (2011) How
efits/gains? Archives of Gerontology and Geriatrics, 48, much striving is too much? John Henryism active coping
238–245. predicts worse daily cortisol responses for African American
Lai, D. W. (2012) Effect of financial costs on caregiving burden but not white female dementia family caregivers. The
of family caregivers of older adults. Sage Open, 2, American Journal of Geriatric Psychiatry, 19, 451–460.
215824401247046. Meyer, O. L., Nguyen, K. H., Dao, T. N., Vu, P., Arean, P. and
Lai, F. H. Y., Yan, E. W. H., Tsui, W. S. and Yu, K. K. Y. (2020) A Hinton, L. (2015) The sociocultural context of caregiving
randomized control trial of activity scheduling for caring for experiences for Vietnamese dementia family caregivers.
older adults with dementia and its impact on their spouse care-- Asian American Journal of Psychology, 6, 263–272.
givers. Archives of Gerontology and Geriatrics, 90, 104167. Moges, S., Belete, T., Mekonen, T. and Menberu, M. (2021)
Lamont, E. and Dickens, G. L. (2021) Mental health services, Lifetime relapse and its associated factors among people
care provision, and professional support for people diag- with schizophrenia spectrum disorders who are on follow
nosed with borderline personality disorder: systematic up at Comprehensive Specialized Hospitals in Amhara
22 R. Phillips et al.

region, Ethiopia: a cross-sectional study. International Pione, R. D., Spector, A., Cartwright, A. V. and Stoner, C. R.
Journal of Mental Health Systems, 15, 1–12. (2021) A psychometric appraisal of positive psychology out-
Moher, D., Liberati, A. A., Tetzlaff, J. and Altman, D. G.; come measures in use with carers of people living with de-
PRISMA Group (2009) Preferred reporting items for system- mentia: a systematic review. International Psychogeriatrics,
atic reviews and meta-analyses: the PRISMA statement. 33, 385–320.
BMJ (Clinical Research ed.), 339, b2535. Polanczyk, G. V., Salum, G. A., Sugaya, L. S., Caye, A. and
Netto, N., Jenny, G. Y. N. and Philip, Y. L. K.. (2009) Growing Rohde, L. A. (2015) Annual research review: a meta-analy-
and gaining through caring for a loved one with dementia. sis of the worldwide prevalence of mental disorders in chil-
Dementia, 8, 245–261. dren and adolescents. Journal of Child Psychology and

Downloaded from https://academic.oup.com/heapro/article/38/3/daac049/6574394 by guest on 08 December 2023

Nordtug, B. and Holen, A. (2011) Similarities and differences in Psychiatry, and Allied Disciplines 56, 345–365.
caring burden of home dwellers with partners suffering from Post, D., Agteren, J., Kasai, D., Barrett, A., Doyle, M., Kernot, J.
chronic obstructive pulmonary disease or dementia. Home et al. (2021) Caring for carers: understanding the physical
Health Care Management & Practice, 23, 93–101. and psychological well-being of carers of veterans in
Norris, D., Eichler, M., Cramm, H., Tam-Seto, L. and Smith- Australia. Health & Social Care in the Community, 30,
Evans, K. (2018) Operational stress injuries and the mental e793–e803.
health and well-being of veteran spouses: a scoping review. Pöysti, M. M., Laakkonen, M. L., Strandberg, T., Savikko, N.,
Journal of Family Theory & Review, 10, 657–671. Tilvis, R. S., Eloniemi-Sulkava, U. et al. (2012) Gender dif-
O’Brien, K. K., Colquhoun, H., Levac, D., Baxter, L., Tricco, A. ferences in dementia spousal caregiving. International
C., Straus, S. et al. (2016) Advancing scoping study method- Journal of Alzheimer’s Disease, 2012, 162960.
ology: a web-based survey and consultation of perceptions Quinn, C., Clare, L. and Woods, R. T. (2012) What predicts
on terminology, definition and methodological steps. BMC whether caregivers of people with dementia find meaning in
Health Services Research, 16, 1–12. their role? International Journal of Geriatric Psychiatry, 27,
O’Flaherty, J. and Phillips, C. (2015) The use of flipped class- 1195–1202.
rooms in higher education: a scoping review. The Internet Quinn, C., Clare, L. and Woods, R. T. (2015) Balancing needs:
and Higher Education, 25, 85–95. the role of motivations, meanings and relationship dynamics
O’Reilly, D., Connolly, S., Rosato, M. and Patterson, C. (2008) in the experience of informal caregivers of people with de-
Is caring associated with an increased risk of mortality? A mentia. Dementia (London, England), 14, 220–237.
longitudinal study. Social Science & Medicine, 67, Robinson-Lane, S. G., Zhang, X. and Patel, A. (2021) Coping
1282–1290. and adaptation to dementia family caregiving: a pilot study.
Ong, H. L., Vaingankar, J. A., Abdin, E., Sambasivam, R., Geriatric Nursing, 42, 256–261.
Fauziana, R., Tan, M. E. et al. (2018) Resilience and burden Roff, L. L., Burgio, L. D., Gitlin, L., Nichols, L., Chaplin, W.
in caregivers of older adults: moderating and mediating and Hardin, J. M. (2004) Positive aspects of Alzheimer’s
effects of perceived social support. BMC Psychiatry, 18, 27. caregiving: the role of race. The Journals of Gerontology
Østergaard, T., Lundgren, T., Zettle, R. D., Landrø, N. I. and Series B: Psychological Sciences and Social Sciences, 59,
Haaland, V. Ø. (2020) Psychological flexibility in depres- P185–P190.
sion relapse prevention: processes of change and positive Roth, D. L., Dilworth-Anderson, P., Huang, J., Gross, A. L. and
mental health in group-based ACT for residual symptoms. Gitlin, L. N. (2015) Positive aspects of family caregiving for
Frontiers in Psychology, 11, 528. dementia: differential item functioning by race. The Journals
Otero, P., Torres, Á. J., Vázquez, F. L., Blanco, V., Ferraces, M. of Gerontology Series B: Psychological Sciences and Social
J. and Dıaz, O. (2019) Does the disease of the person receiv- Sciences, 70, 813–819.
ing care affect the emotional state of non-professional care- Roth, D. L., Perkins, M., Wadley, V. G., Temple, E. M. and
givers? Frontiers in Psychology, 10, 1144. Haley, W. E. (2009) Family caregiving and emotional strain:
Özgönül, M. L. and Bademli, K. (2022) Ethical problems experi- associations with quality of life in a large national sample of
enced by family caregivers of patient with schizophrenia: a middle-aged and older adults. Quality of Life Research, 18,
hermeneutic phenomenological study. Perspectives in 679–688.
Psychiatric Care. Ruisoto, P., Contador, I., Fernández-Calvo, B., Serra, L., Jenaro,
Papastavrou, E., Tsangari, H., Kalokerinou, A., Papacostas, S. C., Flores, N. et al. (2020) Mediating effect of social support
S. and Sourtzi, P. (2009) Gender issues in caring for de- on the relationship between resilience and burden in care-
mented relatives. Health Science Journal, 3, 41–53. givers of people with dementia. Archives of Gerontology
Park, C. L. (2010) Making sense of the meaning literature: an in- and Geriatrics, 86, 103952.
tegrative review of meaning making and its effects on adjust- Sadock, B., Sadock, V. A. and Sussman, N. (2017) Kaplan &
ment to stressful life events. Psychological Bulletin, 136, Sadock’s Pocket Handbook of Psychiatric Drug Treatment.
257–301. Lippincott Williams & Wilkins, Philadelphia, US.
Pattanayak, R. D., Jena, R., Tripathi, M. and Khandelwal, S. K. Sánchez-Izquierdo, M., Prieto-Ursúa, M. and Caperos, J. M.
(2010) Assessment of burden in caregivers of Alzheimer’s (2015) Positive aspects of family caregiving of dependent el-
disease from India. Asian Journal of Psychiatry, 3, 112–116. derly. Educational Gerontology, 41, 745–756.
The impact of caring for family members with mental illnesses 23

Shanley, C., Russell, C., Middleton, H. and Simpson-Young, V. among family members of people with mental illness.
(2011) Living through end-stage dementia: the experiences Rehabilitation Psychology, 58, 73–80.
and expressed needs of family carers. Dementia, 10, Van Der Sanden, R. L., Bos, A. E., Stutterheim, S. E., Pryor, J. B.
325–340. and Kok, G. (2015) Stigma by association among family
Sharma, N., Chakrabarti, S. and Grover, S. (2016) Gender dif- members of people with a mental illness: a qualitative analy-
ferences in caregiving among family-caregivers of people sis. Journal of Community & Applied Social Psychology,
with mental illnesses. World Journal of Psychiatry, 6, 7. 25, 400–417.
Shiraishi, N. and Reilly, J. (2019) Positive and negative impacts Vasileiou, K., Barnett, J., Barreto, M., Vines, J., Atkinson, M.,
of schizophrenia on family caregivers: a systematic review Lawson, S. et al. (2017) Experiences of loneliness associated

Downloaded from https://academic.oup.com/heapro/article/38/3/daac049/6574394 by guest on 08 December 2023

and qualitative meta-summary. Social Psychiatry and with being an informal caregiver: a qualitative investigation.
Psychiatric Epidemiology, 54, 277–290. Frontiers in Psychology, 8, 585.
Stanley, S., Balakrishnan, S. and Ilangovan, S. (2017) Walsh, K., Grech, C. and Hill, K. (2019) Health advice and edu-
Psychological distress, perceived burden and quality of life cation given to overweight patients by primary care doctors
in caregivers of persons with schizophrenia. Journal of
and nurses: a scoping literature review. Preventive Medicine
Mental Health (Abingdon, England), 26, 134–141.
Reports, 14, 100812.
Sun, F., Lee Roff, L., Klemmack, D. and Burgio, L. D. (2008)
Wayland, S., Coker, S. and Maple, M. (2021) The human ap-
The influences of gender and religiousness on Alzheimer dis-
proach to supportive interventions: the lived experience of
ease caregivers’ use of informal support and formal services.
people who care for others who suicide attempt.
Journal of Aging and Health, 20, 937–953.
International Journal of Mental Health Nursing, 30,
Teles, S., Ferreira, A. and Paúl, C. (2021) Access and retention
667–682.
of informal dementia caregivers in psychosocial interven-
WHO (2017) Mental Health Atlas. https://apps.who.int/iris/bit
tions: a cross-sectional study. Archives of Gerontology and
stream/handle/10665/272735/9789241514019-eng.pdf?
Geriatrics, 93, 104289.
Temple, J. B. and Dow, B. (2018) The unmet support needs of ua=1 (last accessed 19 March 2022).
carers of older Australians: prevalence and mental health. Williams, K. L., Morrison, V. and Robinson, C. A. (2014)
International Psychogeriatrics, 30, 1849–1860. Exploring caregiving experiences: caregiver coping and
Tsai, C.-F., Hwang, W.-S., Lee, J.-J., Wang, W.-F., Huang, L.- making sense of illness. Aging & Mental Health, 18,
C., Huang, L.-K. et al. (2021) Predictors of caregiver burden 600–609.
in aged caregivers of demented older patients. BMC Yin, Y., Zhang, W., Hu, Z., Jia, F., Li, Y., Xu, H. et al. (2014)
Geriatrics, 21, 1–9. Experiences of stigma and discrimination among caregivers
Tuomola, J., Soon, J., Fisher, P. and Yap, P. (2016) Lived experi- of persons with schizophrenia in China: a field survey. PLoS
ence of caregivers of persons with dementia and the impact One, 9, e108527.
on their sense of self: a qualitative study in Singapore. Zwar, L., König, H. H. and Hajek, A. (2020) Psychosocial con-
Journal of Cross-Cultural Gerontology, 31, 157–172. sequences of transitioning into informal caregiving in male
van der Sanden, R. L., Bos, A. E., Stutterheim, S. E., Pryor, J. B. and female caregivers: findings from a population-based
and Kok, G. (2013) Experiences of stigma by association panel study. Social Science & Medicine, 264, 113281.