Factors that contribute to adult children caregivers' well-being: a scoping review.

Health and Social Care in the Community (2015) 23(5), 449–466

doi: 10.1111/hsc.12144

Review Factors that contribute to adult children caregivers’ well-being: a scoping review Marina Bastawrous PhD(c) MSc HonBSc1, Monique A. Gignac Jill I. Cameron PhD1,4

PhD

2

, Moira K. Kapral

MSc MD FRCPC

3

and

1

Graduate Department of Rehabilitation Science, University of Toronto, Toronto, Ontario, Canada, 2Division of Healthcare and Outcomes Research, Toronto Western Research Institute, Toronto, Ontario, Canada, 3Division of Support, Systems and Outcomes-Cardiovascular, Toronto General Research Institute, Toronto, Ontario, Canada and 4 Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, Ontario, Canada Accepted for publication 10 July 2014

Correspondence Jill Cameron Department of Occupational Science & Occupational Therapy University of Toronto 160-500 University Ave. Toronto, Ontario, Canada M5G 1V7 E-mail: [email protected] What is known about this topic

• • • •

Adult children are increasingly becoming caregivers to ageing parents. Existing reviews of caregiver needs and health outcomes are disproportionately skewed towards the reports of spousal caregivers. Adult children caregivers (ACCs) are distinct from spousal caregivers in terms of the roles they occupy and the relationship they have with the care recipient. There is a growing body of literature that investigates the factors contributing to ACC well-being that has yet to be reviewed and appraised.

What this paper adds

• • • •

Factors that contribute to ACC well-being can be mapped into those that are: (i) care recipient-related; (ii) caregiver-related; and (iii) socially embedded. The most frequently investigated factors are those that are socially embedded (i.e. parent–child relationship, multiple role involvement, social support to ACC). Higher quality parent–child relationships are related to better well-being, but there is disagreement about how multiple role involvement contributes to well-being. The majority of studies are cross-sectional with a paucity of longitudinal and qualitative studies.

© 2014 John Wiley & Sons Ltd

Abstract The ageing of the population will increasingly result in reliance on the family for care in the community. Existing reviews have provided insights into the needs and health outcomes of family caregivers, but are disproportionately skewed towards spousal caregivers. Presently, a large majority of family caregivers are adult children. Adult children are distinct from spousal caregivers in terms of the combination of roles they occupy and the relationship they have with the care recipient. These unique considerations can have important implications for their wellbeing. A growing body of literature has investigated the factors that contribute to adult children caregivers’ (ACCs) well-being; however, no reviews to date have synthesised this body of literature or appraised its methodological quality. Our objective was to identify the range and types of factors that contribute to ACC well-being across studies. A scoping review was conducted. Medline, Psycinfo, EMBASE and CINAHL databases (January 1996–August, 2012) were systematically searched for studies investigating ACC well-being. Inclusion/exclusion criteria were applied, methodological quality was appraised, the data were charted and a narrative synthesis was conducted. Fifty-five studies met our inclusion criteria. Factors that contribute to ACC well-being were found to be either: (i) care recipient-related (e.g. nature of limitations, amount of care required); (ii) caregiver-related (e.g. psychological dispositions of the ACC); or (iii) socially embedded (e.g. parent–child relationship, multiple role involvement, social support available to the ACC). Socially embedded factors that contribute to ACC well-being have received the most attention in the literature. Among these factors, ACC well-being is uniquely impacted by the quality of the parent–child relationship and combination of roles occupied. The majority of studies were crosssectional. Future studies should therefore employ a longitudinal design to inform our understanding of the changes that take place in the parent– child relationship and multiple role involvement across the care-giving trajectory. Keywords: adult children, care-giving, scoping review, well-being

449

M. Bastawrous et al.

Introduction Current demographic trends indicate that North America and Europe are shifting towards an ageing population. Currently, 15% and 12.8% of the Canadian and U.S. populations, respectively, are 65 years and older (Fowles 2007, Giannakouris 2011). The trend in Europe is similar with those aged 65 or older comprising 17.1% of the population (Fowles 2007, Cranswick & Dosman 2008). With the Baby Boomer generation reaching retirement age, it is estimated that this percentage will rise to nearly 20% in both Canada and the U.S. by 2030 (Giannakouris 2011) and to nearly 40% in Europe (Raina et al. 1998). As individuals age, they may experience limitations in their ability to independently perform activities of daily living (ADLs) (e.g. bathing, dressing) as well as instrumental activities of daily living (IADLs) (e.g. driving, paying bills) (Kenneth & Kenneth 2000). The majority of care and assistance that community residing elders receive are provided by family members. Family caregivers’ unpaid labour annually saves the Canadian and American healthcare systems over $27 and $350 billion respectively (Gibson & Houser 2007, Hollander et al. 2009). Caregivers are often challenged by the physical and emotional support they must provide to the care recipient and, as a result, can experience declines in their own health and social functioning (Lilly et al. 2012). When family caregivers lack support and resources, they experience greater financial, physical and psychosocial costs and this can ultimately compromise the quality of care they are able to provide (Mayo et al. 2000). For this reason, identifying ways to improve caregiver well-being has been, and continues to be, a research priority. Systematic reviews and meta-analyses of the caregiving literature have been published in several populations, including cancer, dementia and stroke. These reviews have investigated various topics, including caregiver needs (McKeown et al. 2003, Bee et al. 2009), correlates of caregiver health outcomes (Black & Almeida 2004, Greenwood et al. 2008, 2009) and care-giving interventions (Selwood et al. 2007, Thompson et al. 2007). A number of pivotal reviews have been conducted by Pinquart and Sorenson, including two that examined ethnic and gender differences in care-giving outcomes (Pinquart & Sorensen 2005, 2006) and two that examined correlates of caregiver burden, subjective well-being and depression (Pinquart & Sorensen 2003b, 2004). From these reviews, we know that the care recipient’s cognitive limitations contribute to care-giving outcomes more so than physical limitations, with behaviour problems 450

being the strongest correlate of burden and depression (Pinquart & Sorensen 2003a). The reviews also suggest that the more assistance a caregiver provides, the higher their reports of burden and depression (Pinquart & Sorensen 2003a) – a trend that is more pronounced for females than males (Pinquart & Sorensen 2006). Interestingly, it appears that only the ‘uplifts’ of care-giving (e.g. positive aspects, gains) are associated with subjective well-being, whereas care-giving stressors are associated with depression. The current demographic trend indicates that adult children are increasingly becoming primary caregivers to ageing parents. In Canada and the United States, 62% and 44% of caregivers, respectively, are adult children (Cranswick & Dosman 2008, National Alliance for Caregiving and the American Association of Retired Persons (AARP) 2009). While the existing systematic reviews have provided important insights into the care-giving experience, they have drawn conclusions based primarily on research that examined these issues in spousal caregivers. Adult children caregivers (ACCs), however, are unique and, in turn, their experiences, needs and health outcomes can importantly differ from spousal caregivers. The provision of care by children is unique in as far as a role reversal often takes place. Throughout their lives, ACCs would have relied upon their parent for support and nurturing. Upon becoming the caregiver, however, the ACCs must provide support and assistance to their parent. This role reversal not only disrupts the previous relationship with the parent (Seltzer & Li 1996) but can also combine with the other demands of care-giving and lead to hostility and resentment (Razani et al. 2007). The literature has indicated that when the quality of the precare-giving relationship is high (i.e. a good relationship between care recipient and caregiver), it can buffer against care-giving stresses and positively influence caregiver well-being. The parent–child relationship is shaped by a distinct history from that of a spousal relationship (i.e. children depend on their parents throughout their lives, while spouses reciprocate support). Therefore, caring for a parent may result in a shift in the parent–child dynamic that may have negative implications for the health and well-being of ACCs involved in the care of their parent. Adult children are also typically at a stage in their lives where they have numerous roles and responsibilities (e.g. being a spouse, parent and employee). While some literature has suggested that having roles other than care-giving can buffer against stress in adult children populations (Pinquart & Sorensen © 2014 John Wiley & Sons Ltd

Factors that contribute to ACCs’ well-being

2003b), role theory provides an alternative position. According to role theory, the addition of the parent care role may result in the ACC having more roles than they are able to attend to (i.e. role overload), which can ultimately cause these roles to compete for the ACC’s attention (i.e. role conflict) (Reid & Hardy 1999). Pearlin’s stress model suggests that the discordance between roles can increase stress (Pearlin 1989). While there is a growing body of literature that has focused predominantly or exclusively on ACCs and factors that contribute to their well-being, no reviews have yet synthesised and appraised this research. In turn, we have a limited understanding of the factors that have been investigated across studies and how they contribute to well-being. Additionally, we do not yet have insights into the quality of this body of research. To fill these gaps, our scoping review of the literature aimed to (i) identify the range of factors that contribute to ACC well-being; (ii) describe which factors are most commonly investigated; (iii) identify areas of congruency and discrepancy in the literature; and (iv) appraise the methodological quality of studies. By mapping the literature focused on ACCs and their well-being, this scoping review can identify issues that are unique to this population and areas in this literature that warrant further empirical investigation. Furthermore, this review can inform future interventions that are tailored to meet the specific needs of ACCs.

Methods Scoping reviews are well suited to examining the extent, range and nature of research activity (Levac et al. 2010) – particularly for an emerging body of research. We followed the University of York’s methodological framework for conducting scoping reviews (Arksey & O’Malley 2005). This framework contributes to the rigour and transparency of the scoping review methodology and helps to enhance the reliability of the findings (Arksey & O’Malley 2005). The five steps outlined by Arksey and O’Malley’s (2005) framework are: (i) identifying the research questions; (ii) identifying relevant studies; (iii) study selection; (iv) charting the data; and (v) collating, summarising and reporting the results. There has been some debate about the place of methodological quality assessment in scoping reviews. While some authors have pointed to the challenges associated with evaluating a vast range of studies and methodological approaches (Levac et al. 2010), others have suggested that the absence of this quality assessment renders findings difficult to © 2014 John Wiley & Sons Ltd

interpret (Brien et al. 2010) and limits their uptake into policy and practice (Grant & Booth 2009). In an effort to further this methodology and contribute to future research and practice, the present scoping review undertook a methodological quality appraisal of the included studies. Scoping reviews, however, are iterative and intend to capture a broad range of research, regardless of design and quality (Arksey & O’Malley 2005). As such, no studies were excluded from the review based on the methodological appraisal. Framework stage 1: identifying the research question An important first step in the scoping review process is identifying the guiding question for the review and identifying important aspects of the question such as population and outcomes (Arksey & O’Malley 2005). Our research question was: ‘Across studies, what are the range and types of issues that contribute to the well-being of ACCs?’ We were aware that ‘well-being’ is a difficult construct to define as its components are broad and many. For the purposes of our review, well-being was conceptualised as the caregivers’ reports/assessments (both positive and negative) (Diener 2009) of elements that include happiness, life satisfaction, morale (McNeil et al. 1986), emotional distress, psychological state, feelings of gain, physical health, depression and quality of life (Cameron et al. 2006). ACCs were our population of interest and therefore it was important to include studies in this review that reported findings based on a sample comprising mainly adult children (i.e. at least 50%). Framework stage 2: identifying relevant studies The literature suggests that comprehensiveness in database searching is important for reviews, but that extensive searches can yield too large a number of citations, thereby limiting the ability to manage and meaningfully review information (Betran et al. 2005). To help direct our database selections, we referred to previous care-giving reviews, which led us to search Psycinfo, EMBASE, Medline and CINAHL between January 1996 and August 2012. The search strategy was tailored to each database using key terms that included ‘caregiver’, ‘adult children’, ‘son’, ‘daughter’, ‘well-being’, ‘adult-child relations’ and ‘caregiving’. Other terms that have been used synonymously with ‘well-being’ in the literature were also included (e.g. stress, depression, burden). Combinations of keywords included caregiver AND 451

© 2014 John Wiley & Sons Ltd 90 daughters; 23 sons; Care-recipient population: Alzheimer’s disease

412 daughters; 135 sons Care-recipient population: general ageing 164 daughters Care-recipient population: cancer

175 daughter–parent dyads Care-recipient population: cancer

358 daughters Care-recipient population: general ageing

96 daughters; 21 sons Care-recipient population: Alzheimer’s disease 1110 daughters; 475 sons Care-recipient population: general ageing


Morano et al. (2005) Cross-sectional

Noonan & Tennstedt (1997) Cross-sectional

Raschick & Ingersoll-Dayton (2004) Cross-sectional

Raveis et al. (1998) Cross-sectional

Raveis et al. (1999) Panel

Rozario et al. (2008) Cross-sectional

Son et al. (2003) Cross-sectional

Starrels et al. (1997) Cross-sectional

Stephens et al. (1997) Cross-sectional

10

11

9

9

11

10

8

10

10

53 daughters; 19 sons Care-recipient population: general ageing

133 daughters and DIL (distribution unspecified) Care-recipient population: general ageing

Mizuno & Takashaki (2005) Cross-sectional

6

ACC sample and care-recipient population

Author (year of publication) Study design

Method quality rating

Table 4 (continued)

• •

• •

•

• •

• •

• • • •

•

•

•

•

Negative spillover from employment role was the strongest mediator of depression Positive spillover from employment role had direct effect on positive affect

Parent’s cognitive and behavioural impairments more strongly related to stress than physical impairment Amount of care provided positively associated with stress for daughters

Care-recipient impairments caused by memory and behavioural problems were found to be related only to burden

Lower satisfaction in family functioning is associated with increased levels of depressive symptoms Availability of secondary informal help significantly associated with lower depressive symptoms for daughters

Social support and performance of various care-giving tasks associated with lower anxiety Greater sense of filial obligation significantly correlated with higher anxiety

Greater sense of filial obligation was correlated with higher depressive symptomatology Performing a greater variety of care-giving tasks was inversely correlated with depressive symptomatology

Women reported greater costs than men Sons did not report greater rewards than other caregivers

Emotional support had the strongest association with self-esteem

Hispanic ACCs had significantly lower depression scores and higher self-acceptance scores compared with non-Hispanic counterparts

Poor physical and sleeping status, inadequate support from other family members and lack of a person to consult on an informal basis were significant correlates of burden Mental and physical status of parent and hours of elder care per day associated with perceived burden

Key findings


459


Figure 1 Search strategy. ACC, adult child caregiver.

a meaningful interpretation of the collected evidence (Khan et al. 2008).

Results Methodological overview Of the 55 studies included in the review, 4 (7.2%) employed a qualitative methodology, 1 (1.8%) used mixed methodology and the remaining 50 (90.9%) used quantitative methodology. The mixed-method study largely reported a quantitative design and findings and was thus grouped with the quantitative studies for the purpose of assessing methodological quality. Of the 51 quantitative studies, 15 (29.4%) were longitudinal and 36 (70.6%) were cross-sectional (see Table 2). Thirty of the 55 studies included in the review (54.6%) solely investigated adult daughter caregivers and 25 (45.5%) studies investigated both sons and daughters. Of the 25 studies investigating both sons and daughters, 19 studies (76%) had a sample comprising mainly daughters and 6 studies (24%) did not specify the gender distribution. The number of participants in the qualitative studies ranged from 15 to 54, with the median being 28. For the quantitative studies, the number of participants ranged from 66 to 3561, with the median being 171 (see Table 3). © 2014 John Wiley & Sons Ltd

Methodological quality assessment of included studies Quantitative studies Of the 51 quantitative studies, the median score on our measure of methodological quality was 10 (range 6–11). For further details on how many studies met each methodological criteria, see Table 1. Individual studies’ methodological quality score can be found in Table 4 in addition to a summary of each study. Qualitative studies Study design. Overall, a qualitative methodology was found to be appropriate for all of the studies included in the review (n = 4). However, none of the studies justified the selection of their sample. Study conduct. The qualitative studies did not describe collecting data until theme saturation occurred, report on ethical considerations (e.g. consenting process) or reflect on their own personal biases that may have influenced the data collection and analysis (i.e. their reflexivity). All but one of the qualitative studies explained their analysis process in detail. Study findings. The statement of findings was a strength of the qualitative studies. All of the studies 453


Table 1 Summary of methodological quality appraisal of quantitative studies Number of studies (%) that met criterion (n = 51)

Methodological elements Design features Hypothesis/hypotheses made explicit Type of study made clear Inclusion/exclusion criteria made explicit Definition of carer/caregiver provided Specifies care-recipient population (e.g. illness) and needs (e.g. ADL or IADL) Outcomes and other variables described (e.g. confounding, independent) Sample size justified Study conduct Response rate (completers) described Participants representative of population (i.e. not convenience sampling) Statistical analysis addressed study objectives Results Participant characteristics described Numerical description of outcomes given (e.g. P-values, medians/means, standard deviation)

Overview of well-being outcomes 38 51 42 43 43

(74.5) (100) (82.4) (84.3) (84.3)

51 (100) 3 (5.9) 37 (72.6) 24 (47.1) 51 (100)

47 (92.2) 51 (100)

ADL, activities of daily living; IADL, instrumental activities of daily living.

Table 2 Methodological approaches, sample sizes and wellbeing outcomes

Methodology

Number of studies (%) (N = 55)

Qualitative Quantitative Mixed-method*

4 (7.2) 50 (90.9) 1 (1.8)

Design (of quantitative studies) Cross-sectional Longitudinal Most commonly investigated aspects of ‘well-being’† Depression Burden Life satisfaction

Participant sample size (range, median) 15–24, 28 66–3561, 171

Number of studies (%) (N = 51) 36 (70.6) 15 (29.4) Number of studies (%) (N = 55) 25 (45.5) 17 (31) 12 (21.8)

*In the manuscript, the mixed-method study was scored and analysed as a quantitative study due to the predominance of the quantitative phase. † Most studies investigated more than one aspect of well-being.

454

linked their findings to their study objectives, used participant quotations to exemplify the themes, explained how their findings contributed to the literature and made recommendations for future research.

Studies operationalised ‘well-being’ in a variety of ways, including psychological, emotional and physical health, and general life assessments (e.g. satisfaction). Depression was assessed in 25 studies (45.5%) and was measured by the Centre for Epidemiological Studies Depression Scale (CES-D) in 20 (36.4%) studies. Caregiver burden was investigated in 17 studies (31%) using a variety of different measurement instruments (e.g. Zarit Burden Interview, Japanese Burden Interview). Finally, well-being was sometimes conceptualised as the caregivers’ general life outlook such as assessments of overall life satisfaction (n = 12). Measures of satisfaction varied greatly with the Family Satisfaction Scale being used most commonly (n = 2). A summary of the most commonly investigated aspects of well-being can be found in Table 2. Overview of factors that contribute to ACC well-being The factors contributing to ACC well-being fell into three over-arching categories. The factors were either: (i) care recipient-related; (ii) caregiver-related; or (iii) socially embedded. Care recipient-related factors entailed aspects of the care recipient’s health and the nature of care provided by the ACC. This included the type of impairment the care recipient had and the duration/frequency of care provided. Caregiverrelated factors consisted of the ACCs’ demographic profile (e.g. gender) and psychological dispositions (e.g. mastery). Finally, socially embedded factors that contributed to ACC well-being included the parent– child relationship, the support available to the ACCs and their role involvement (e.g. multiple roles held). Care recipient-related factors Duration of care-giving, type of care provided (e.g. emotional versus physical support), amount of care provided and parent’s impairment type (e.g. physical or cognitive) were investigated in 12 studies. Generally, studies agreed that parental cognitive impairment was associated with greater depression and higher burden for ACCs than physical impairments (Mastrian et al. 1996, Starrels et al. 1997, Stephens et al. 2001, Kim & Lee 2003, Li & Seltzer 2003, Varona



Table 3 Sample populations of included studies Caregiver sample population*


Patients (illness group)


Daughters only Daughters and sons

30 (54.6) 25 (45.5)

Studies with mixed son and daughter sample


General ageing Cancer Alzheimer’s disease/dementia Stroke

42 4 8 1

Daughters > sons Distribution unspecified

19 (76) 6 (24)

(76.4) (7.1) (14.5) (1.8)

*All study samples comprised at least 50% adult children caregivers (ACCs). Only the ACC distribution of the sample is reported.

et al. 2007, Yeager et al. 2010). Behavioural problems, specifically, were associated with perceived burden, depression and low life satisfaction (Lawrence et al. 1998, Li et al. 1999, Stephens et al. 2001, Son et al. 2003, Kang 2006, Varona et al. 2007, Conde-Sala et al. 2010). One study suggested that heightened carerecipients psychological distress was associated with lower quality of life for ACCs (Kim et al. 2008). The care recipient’s condition often dictates the length of care-giving, amount of care required from the ACCs and type of care provided. Overall, there was disagreement among studies on how duration of care impacted aspects of well-being. Some studies reported that a longer duration of care was associated with reports of depression and low satisfaction (Bookwala 2009, Coe & Van Houtven 2009), whereas others suggested that it was associated with lower levels of burden (Zhan 2005). Both longitudinal and cross-sectional studies agree that greater care provision contributes to well-being negatively. As care provision increased over time, ACCs reported lower satisfaction (Walker et al. 1996). Several studies also found that providing more hours of care was associated with burden, stress and health strain (Mastrian et al. 1996, Starrels et al. 1997, Mizuno & Takashaki 2005, Varona et al. 2007, Lou et al. 2011). While hours of care appear to negatively impact well-being, the findings from two studies suggest that performing a greater number of care-giving tasks lowers ACCs’ levels of depression and anxiety (Raveis et al. 1998, 1999). The nature of the care ACCs provided received some attention in the literature. Four studies explored the type of care provided (i.e. instrumental versus emotional). One study suggested that the provision of emotional support was associated with higher ACC well-being (Merz et al. 2009). In another study, however, emotional support was negatively associated with caregivers’ psychological distress (Lou et al. 2011). Several studies indicated that providing © 2014 John Wiley & Sons Ltd

instrumental support to parents was associated with lower well-being, higher psychological distress, leisure restriction and higher perceived burden (Stephens et al. 2001, Zhan 2005, Merz et al. 2009, Lou et al. 2011). Caregiver-related factors Sociodemographic profile of caregiver (n = 15). The sociodemographic factors that were investigated were caregiver gender, age, education, marital status and ethnocultural background. Sons and daughters differed with respect to the factors that positively and negatively contributed to well-being. Daughters tended to report more persistent depression symptoms over time compared with sons (Bookwala 2009, Coe & Van Houtven 2009) as well as higher personal and emotional costs related to care-giving (i.e. exhaustion, perceptions of being overwhelmed) (Raschick & Ingersoll-Dayton 2004). Interestingly, however, daughters also reported more rewards (i.e. life satisfaction) than care-giving sons (Raschick & Ingersoll-Dayton 2004). Only one study considered marital status, but indicated that unmarried sons reported more depression than unmarried daughters (Marks et al. 2008). Studies did not reveal a consistent relationship between education level and ACC well-being (Li et al. 1999, Zhan 2005, Varona et al. 2007, Marks et al. 2008, Bachner et al. 2009). A similar discrepancy was observed for studies that explored ethnocultural background as a factor contributing to ACC well-being (Lee & Sung 1998, White et al. 2000, Jolicoeur & Madden 2002, Kim & Lee 2003, Morano & Sanders 2005, Wong 2005). The findings related to income were more consistent, with lower income ACCs reporting more burden (Varona et al. 2007), more depressive symptoms (White et al. 2000), less mastery and self-esteem, and poorer physical health (Marks et al. 2008). Only one 455

456 426 daughters Care-recipient population: general ageing 296 daughters Care-recipient population: general ageing 303 daughter and parent dyads Care-recipient population: cancer 119 recent caregivers (daughter/son distribution unspecified) Care-recipient population: general ageing 80 daughters Care-recipient population: general ageing 140 daughters; 31 sons Care-recipient population: general ageing 296 daughters Care-recipient population: general ageing

904 daughters; 563 sons Care-recipient population: general ageing 119 daughters; 20 sons Care-recipient population: Alzheimer’s disease 786 daughters Care-recipient population: general ageing

Albert et al. (1996) Cross-sectional

Atienza et al. (2002) Cross-sectional

Bachner et al. (2009) Panel

Bookwala et al. (2009) Longitudinal

Carpenter (2001) Cross-sectional

Carruth et al. (1996) Cross-sectional

Christensen et al. (1998) Cross-sectional

Coe & Van Houtven (2009) Longitudinal

Conde-Sala et al. (2010) Cross-sectional

Dautzenberg et al. (1999) Longitudinal

7

10

11

10

9

8

10

8

8

10

126 daughters Care-recipient population: general ageing 66 daughters Care-recipient population: general ageing

England (1996) Cross-sectional

Franks & Stephens (1996) Cross-sectional

Gonyea et al. (2008) Mixed methods (longitudinal)

8

10

8

128 daughters; 40 sons Care-recipient population: dementia




Table 4 Summary chart of studies included in the review

•

•

• • • • •

•

• •

•

•

• • •

•

•

Significant portion of caregiver burden explained by feelings of guilt

Instrumental support buffered relationship between stress and physical health

Interfacing with an interpersonal network was associated with ACC reports of a greater sense of well-being (only in the absence of crisis)

Care-giving role commitment did not moderate effect of care-giving on distress Number of roles held was not associated with distress

Behavioural and psychological problems of parent associated with higher burden Holding multiple roles associated with higher burden

Depression symptoms are persistent for women (i.e. significant after 2 years)

Mastery in family roles associated with well-being, but not mastery in employee role High mastery in parent care and marital roles associated with lower depression and higher life satisfaction

When caregivers receive positive exchanges from parents, they report emotionally satisfying relationships and less caregiver strain

Greater attachment associated with lower burden

Sons showed decline in depressive symptoms over time while daughters experienced an increase in long-term depression

High income and employment associated with greater global self-esteem Global self-esteem inversely correlated with depressive affect

Optimism directly relates to reduced depressive symptomatology and greater life satisfaction

Perceiving parent care to be like childcare was associated with greater report of burden and lower satisfaction

Key findings



22 daughters; 7 sons; 7 DIL caregivers Care-recipient population: general ageing

386 daughters; 129 sons Care-recipient population: general ageing 79 daughters; 40 sons Care-recipient population: general ageing

27 daughters; 93 DIL Care-recipient population: general ageing 98 mother–ACC dyads included Care-recipient population: cancer 86 ACCs (daughter/son distribution unspecified) Care-recipient population: general ageing

107 ACCs (son/daughter distribution not specified) Care-recipient population: general ageing 104 daughters; 21 sons Care-recipient population: stroke 149 daughters Care-recipient population: general ageing 115 daughters Care-recipient population: general ageing

Grand et al. (1999) Qualitative

Jolicoeur & Madden (2002) Qualitative

Kang (2006) Cross-sectional

Karantzas et al. (2010) Cross-sectional

Khalaila & Litwin (2011) Cross-sectional

Kim & Lee (2003) Cross-sectional

Kim et al. (2008) Longitudinal

Lawrence et al. (1998) Cross-sectional

Lee & Sung (1998) Cross-sectional

Lee et al. (2010) Cross-sectional

Li et al. (1997) Cross-sectional

Li et al. (1999) Longitudinal

Li & Seltzer (2003) Longitudinal

n/a

n/a

11

9

11


9

11

11

10

6

11

11

11


156 daughters; 80 sons Care-recipient population: General ageing





Table 4 (continued)

•

•

•

•

•

•

•

•

•

• •

•

•

• • •

•

Daughters caring for parents with both physical and cognitive impairments have poorer and deteriorating relationships with parents as compared with non-care-giving daughters

Greater number of parental behaviour problems associated with lower level of mastery

Emotional support had a buffering effect on stress for daughter and wife caregivers

Appraisal scores did not differ by gender, education or income

Lower level of burden among Koreans was associated with filial responsibility

Presence of problem behaviours was significantly related to higher levels of perceived overload, role captivity and depression Higher levels of relationship quality were related to lower levels of depression

ACCs’ own level of psychological distress was the strongest predictor of their quality of life

Cognitive impairment predicts CG depression

Burden predicted negatively by filial piety Mastery negatively predicted burden and depression and mediated the relationship between the two

Avoidance positively related to burden and negatively related to willingness to provide future care

Moderate correlation between elder’s disruptive behaviours and caregivers’ perceived overload

The cultured group reported that their health had worsened more often than the acculturated group Cultured group was more burdened due to less social support and greater role conflict

When ACCs did not acknowledge a debt to their parents or grief over the past relationship is expressed, their burden is more intense Spousal support increased care-giving tolerance

Key findings


457

458 136 daughters Care-recipient population: general ageing 304 daughters; 198 sons Care-recipient population: general ageing 3561 ACC (daughter/son distribution unspecified) Care-recipient population: general ageing

91 ACCs (daughter/son distribution unspecified) Care-recipient population: dementia 614 daughters; 446 sons Care-recipient population: general ageing


105 ACCs (gender distribution not specified) Care-recipient population: general ageing

874 daughter–parent dyads; 582 son–parent dyads Care-recipient population: general ageing

Li & Seltzer (2005) Cross-sectional

Lin et al. (2012)

Lou et al. (2011)

Magai & Cohen (1998) Cross-sectional

Marks et al. (2008) Longitudinal

Martire et al. (1997) Longitudinal

Mastrian et al. (1996) Cross-sectional

Merz et al. (2009) Panel

11

6

9

7

9

10

9

8




Table 4 (continued)

• •

• • •

• •

•

•

•

•

•

•

• •

Well-being of ACC was associated with relationship quality Higher penetration (instrumental support) was associated with lower well-being

Cognitive impairment of elder was a positive predictor of health strain Perception of social support was negatively associated with all types of health strain ACCs who spent a greater number of hours per week care-giving experienced more social/recreational health strain

Those daughters who felt more adequate as mothers experienced less negative affect Feelings of adequacy in spouse role related to better social well-being and adequacy in mother role was associated with less negative affect

Daughters reporting low relationship quality prior to care-giving reported greater declines in self-esteem over time than those with high-quality pre-care-giving relationships Less filial obligation associated with decreased physical health and happiness for daughters and higher psychological wellness for sons

Burden lowest for those caregivers with secure pre-morbid attachment styles (as compared with those with avoidant and ambivalent pre-morbid styles)

ACCs who provide care with instrumental activities of daily living and provide a greater amount of care are more likely to report psychological distress Providing emotional support is negatively associated with psychological distress

Social resources (e.g. feedback from others) and high-quality parent-to-child relationship moderate the effect of caregiver burden on depression

Relationship quality correlated with self-esteem of daughters Relationship strain was negatively associated with daughters’ self-esteem

Key findings



© 2014 John Wiley & Sons Ltd 90 daughters; 23 sons; Care-recipient population: Alzheimer’s disease

412 daughters; 135 sons Care-recipient population: general ageing 164 daughters Care-recipient population: cancer

175 daughter–parent dyads Care-recipient population: cancer


96 daughters; 21 sons Care-recipient population: Alzheimer’s disease 1110 daughters; 475 sons Care-recipient population: general ageing


Morano et al. (2005) Cross-sectional

Noonan & Tennstedt (1997) Cross-sectional

Raschick & Ingersoll-Dayton (2004) Cross-sectional

Raveis et al. (1998) Cross-sectional

Raveis et al. (1999) Panel

Rozario et al. (2008) Cross-sectional

Son et al. (2003) Cross-sectional

Starrels et al. (1997) Cross-sectional


10

11

9

9

11

10

8

10

10

53 daughters; 19 sons Care-recipient population: general ageing

133 daughters and DIL (distribution unspecified) Care-recipient population: general ageing

Mizuno & Takashaki (2005) Cross-sectional

6




Table 4 (continued)

• •

• •

•

• •

• •

• • • •

•

•

•

•

Negative spillover from employment role was the strongest mediator of depression Positive spillover from employment role had direct effect on positive affect

Parent’s cognitive and behavioural impairments more strongly related to stress than physical impairment Amount of care provided positively associated with stress for daughters

Care-recipient impairments caused by memory and behavioural problems were found to be related only to burden

Lower satisfaction in family functioning is associated with increased levels of depressive symptoms Availability of secondary informal help significantly associated with lower depressive symptoms for daughters

Social support and performance of various care-giving tasks associated with lower anxiety Greater sense of filial obligation significantly correlated with higher anxiety

Greater sense of filial obligation was correlated with higher depressive symptomatology Performing a greater variety of care-giving tasks was inversely correlated with depressive symptomatology

Women reported greater costs than men Sons did not report greater rewards than other caregivers

Emotional support had the strongest association with self-esteem

Hispanic ACCs had significantly lower depression scores and higher self-acceptance scores compared with non-Hispanic counterparts

Poor physical and sleeping status, inadequate support from other family members and lack of a person to consult on an informal basis were significant correlates of burden Mental and physical status of parent and hours of elder care per day associated with perceived burden

Key findings


459

460 152 daughters; 41 sons Care-recipient population: general ageing 130 daughters Care-recipient population: general ageing 29 daughters; 33 DIL; 57 sons Care-recipient population: dementia 15 daughters Care-recipient population: dementia

317 daughters Care-recipient population: general ageing 6 daughters; 3 sons; 7 DIL Care-recipient population: general ageing 85 daughters, 79 DIL Care-recipient population: general ageing 398 ACCs (daughter/son distribution unspecified) Care-recipient population: dementia

Varona et al. (2007) Cross-sectional

Walker et al. (1996) Longitudinal

Wang et al. (2011) Cross-sectional

Ward-Griffin et al. (2007) Qualitative

White et al. (2000) Cross-sectional

Wong (2005) Qualitative

Yajima et al. (2007) Longitudinal

Yeager et al. (2010) Retrospective longitudinal case review

9

10

9

n/a

10

n/a

7

7

Method quality ratings only completed for quantitative studies (maximum score = 12). ACC, adult children caregiver; CG, caregiver; DIL, daughter-in-law.

56 daughters; 33 sons; 19 DIL Care-recipient population: general ageing



11

Zhan (2005) Cross-sectional



10

10




Table 4 (continued)

• •

• •

•

• • •

• •

•

• • •

•

•

Length of care-giving and extent of parental disability associated with subjective burden Provision of greater instrumental support associated with higher levels of subjective burden

Diagnosis type, physical functioning and caregiver gender all had main effects on depression Presence of psychosis in addition to dementia significantly increased burden

Larger emotional support network was associated with a decreased risk for depression in daughters-in-law

Sexual taboos put constraints on the ACCs as they tried to perform intimate care tasks, which they reported increased their stress and anxiety while care-giving

African American daughters reported lower stress and higher rewards than white daughters No race differences in depression

Daughters who described having custodial and combative relationships with their mothers tended to report more burden Daughters who described strength-based complementary and cohesive relationships tended to report more gratification

Holding a full-time job associated with greater role strain

More care given over time and care-giving satisfaction decreases over time

ACCs caring for parent with behavioural problems had higher burden perception The receipt of social support was associated with lower burden

Provision of instrumental assistance associated with leisure activity restriction

Daughters experiencing higher levels of stress due to parent care reported greater depression

Key findings




study investigated the influence of rural versus urban residence on caregiver well-being and suggested that caregivers who reside in urban areas experience more stress (Lee et al. 2010). Psychological dispositions (n = 11). Several studies investigated caregivers’ psychological dispositions and their contribution to well-being. Psychological dispositions included optimism, self-esteem and mastery. Higher optimism was associated with lower depressive symptomatology, higher life satisfaction (Stephens et al. 1997, Christensen et al. 1998, Atienza et al. 2002) and was found to moderate the association of stress on ACC well-being (Franks & Stephens 1996, Atienza et al. 2002). Higher self-esteem was associated with lower depressive affect (Bachner et al. 2009) and moderated the association between parent–child relationship quality and reported depressive symptoms (Li & Seltzer 2003). ACCs who described feeling guilty about failing to live up to personal standards or social conventions related to care-giving reported more burden (Gonyea et al. 2008). Caregivers who found meaning in care-giving reported fewer depressive symptoms and higher self-esteem (Noonan & Tennstedt 1997). Perceptions of mastery (i.e. perceived control) in different life roles was associated with less depressive symptoms over time (Christensen et al. 1998, Li et al. 1999), greater life satisfaction and less burden (Kim & Lee 2003, Khalaila & Litwin 2011). In one study, this association was especially evident when ACCs reported high mastery of family roles (i.e. parent care role and spouse role) (Christensen et al. 1998). In another study, higher mastery was associated with ACCs experiencing less role overload (Noonan & Tennstedt 1997). Socially embedded factors Parent–child relationship (n = 15). All of the studies that investigated parent–child relationships examined aspects of relationship quality (n = 15). Higher quality relationships entailed secure attachment, greater family satisfaction as well as co-operative and positive exchanges with parents (Magai & Cohen 1998, Carpenter 2001, Ward-Griffin et al. 2007). Lower quality relationships consisted of strain, conflict and ambivalent/avoidant attachment styles (Magai & Cohen 1998). In most studies, caregivers who had high-quality relationships with their parents reported low distress, strain, burden and depression as well as high self-esteem and satisfaction (Lawrence et al. 1998, Dautzenberg et al. 1999, Li & Seltzer 2003, 2005, Mizuno & Takashaki 2005, Ward-Griffin et al. 2007, © 2014 John Wiley & Sons Ltd

Karantzas et al. 2010, Lin et al. 2012) In one study, where instrumental support needs were high, relationship quality was not associated with ACC wellbeing (Merz et al. 2009). Qualitative research suggests that when caregivers feel that the parent–child relationship consists of disappointment or conflict, they experience greater feelings of burden (Ward-Griffin et al. 2007). Five studies investigated the notion of ‘filial obligation’, but no consistent relationship between filial obligation and ACC well-being was observed (Raveis et al. 1998, 1999, Grand et al. 1999, Marks et al. 2008, Khalaila & Litwin 2011). Social support (n = 13). Social support included both emotional support (e.g. spousal understanding, advice) and instrumental support (e.g. physical assistance with tasks) received by the caregiver. In 11 studies, caregivers who had support available to them reported better health and well-being (England 1996, Li et al. 1997, Noonan & Tennstedt 1997, Raveis et al. 1999, Son et al. 2003, Raschick & Ingersoll-Dayton 2004, Mizuno & Takashaki 2005, Varona et al. 2007, Yajima et al. 2007, Rozario et al. 2008, Lin et al. 2012). Higher social support was associated with lower anxiety, burden and health strain as well as higher satisfaction (Mastrian et al. 1996, Raveis et al. 1999, Son et al. 2003, Varona et al. 2007). Receipt of emotional support was associated with lower overload, lower risk of depression, and less social and recreational health strain (Mastrian et al. 1996, Raveis et al. 1999, Son et al. 2003, Varona et al. 2007). Grand et al.’s (1999) qualitative study suggested that when spouses were understanding or provided support, the caregiving role was better tolerated. However, caregivers experienced more stress when they were pressured by their spouses to choose between their marriage and the care-giving role. Involvement in multiple roles (n = 10). In most studies, holding multiple roles was not associated with increased role strain, depression (Raveis et al. 1998, Dautzenberg et al. 1999, Li et al. 1999), anxiety (Raveis et al. 1999) or burden (Conde-Sala et al. 2010). In one study, ACCs who felt that they adequately performed each of their roles, including care-giving, reported better well-being and lower negative affect (Martire et al. 1997). Paid employment may affect ACC well-being negatively when the job is full-time (Marks et al. 2008, Wang et al. 2011) and is inflexible (Wang et al. 2011). ACCs also experience declines in well-being when job-related stress ‘spills over’ into other roles (e.g. parenting, care-giving) (Stephens et al. 1997). One study reported that being a mother intensified the negative effects that holding other 461


roles (e.g. employee, spouse) had on well-being (Stephens & Townsend 1997).

Discussion The goal of this scoping review was to identify and synthesise the range and types of factors that contribute to the well-being of ACCs. Among the 55 studies included in the review, a range of elements were identified as contributing to ACC well-being, including (i) care recipient related; (ii) caregiver-related; or (iii) socially embedded. ACCs reported poorer wellbeing when they provided care for a long duration of time and when the parent had cognitive deficits. The literature was inconsistent with regard to the influence of prior sociodemographic resources on ACC well-being, but suggested that positive psychological dispositions, such as mastery, had a positive influence on well-being. With regard to the socially embedded factors, studies agreed that greater social support and higher quality parent–child relationships were associated with better well-being. The literature was inconsistent regarding the impact of multiple role involvement on well-being. Methodological considerations Some of the methodological concerns expressed by existing systematic reviews in the field of care-giving are also evident in the present review. Only 15 studies (29.4%) employed a longitudinal design. This limits our ability to understand how components of ACC well-being are affected and change over time. This is a particularly noteworthy gap when it comes to understanding certain variables such as relationships and how they change between the ACC and parent as a result of care-giving. Another concern lies in the variability of measurement tools used to assess well-being outcomes. The majority of studies employed the use of the CES-D to measure depression and many used the Zarit Burden Index to gauge caregiver burden. Measures used for other aspects of well-being, however, were varied. This variability limits the ability to conduct a rigorous comparison of outcomes across studies and generalise findings. Future studies should use validated and well-established measurement instruments to investigate aspects of ACC well-being. As only 4 of the 55 studies (7.3%) included in the review employed a qualitative methodology, this indicates a gap in this body of research. Qualitative studies uniquely provide in-depth insights into participants’ experiences and perspectives. This is particularly useful for exploring emerging topics 462

within the ACC literature and capturing care-giving outcomes that may be overlooked by measurement instruments (Greenwood et al. 2009). Studies in this review had samples comprising mainly daughter caregivers, suggesting that there is a gap in our knowledge surrounding the experiences and well-being of son caregivers. This may be due to several factors: (i) a pre-determined focus on female caregivers; (ii) a greater propensity to participate by female caregivers; or (iii) a larger population of daughter caregivers. Future research should avoid excluding son caregivers from studies and emphasise meaningful comparisons between the two care-giving populations. Factors that contribute to ACC well-being Within the realms of caregiver- and care recipientrelated factors, some parallels can be drawn between the literature on spousal and parental care-giving. Consistent with existing reviews on spousal caregivers, ACCs’ well-being (e.g. depression, burden) is more negatively impacted by the cognitive limitations of the care recipient than physical limitations (Pinquart & Sorensen 2003a). Also in line with the spousal care literature, behavioural problems exhibited by parents were significantly associated with reports of burden, depression and low life satisfaction. While the ACC literature was somewhat inconsistent with regard to the influence of demographics on wellbeing, studies regularly found that daughters reported more persistent depression over time and greater personal costs than sons. Again, this finding is consistent with the spousal care-giving literature (Pinquart & Sorensen 2006). Little consistency was observed with regard to ethnocultural background as a factor influencing ACC well-being. This is most likely due to the varied care-giving responsibilities and expectations associated with different cultures. Consequently, ethnocultural background may be most appropriately incorporated in future research as an element that contextualises the relationship between other factors and ACC well-being. Our review suggests that the greatest differences between ACCs and spousal caregivers relate to the socially embedded factors that contribute to wellbeing. Unique to the ACC population are considerations of the parent–child relationship and the combination of roles they occupy (e.g. being a spouse, caregiver, parent, employee). All of the studies that investigated the parent–child relationship and its association with ACC well-being found that highquality relationships (e.g. close, attachment) were associated with better well-being (e.g. lower distress, © 2014 John Wiley & Sons Ltd


strain and burden). Most of these studies, however, explored the impact of the pre-care-giving relationship on ACC well-being with few examining changes in the relationship over time. In turn, we have limited understanding of how the parent–child relationship changes or evolves across the care-giving trajectory. The literature has pointed to the importance of providing time-specific support to caregivers as their experiences and needs evolve across the care-giving trajectory (Cameron & Gignac 2008). To inform future interventional work, studies should prioritise the use of longitudinal and qualitative designs to expand our understanding of actual and perceived changes in the parent–child relationship and how such changes may be associated with ACC well-being over time. The combination of roles occupied by ACCs importantly differs from spousal caregivers. Specifically, spousal caregivers are in an intimate relationship with the care recipient, which consolidates their spousal and care-giving responsibilities to a single person. In contrast, ACCs have a care-giving responsibility to their parent in addition to the responsibilities they have as a partner. While the findings suggest that wellbeing is not impacted by the number of roles an ACC occupies, the combination and quality of these roles can result in limitations on time that lead to role conflicts (Stephens & Townsend 1997, Stephens et al. 1997). This finding in conjunction with past literature indicates that the subjective aspects of holding multiple roles (e.g. quality of role performance, perceptions of effort expended, value of the role) may be as important to caregivers as those that are strictly objective and quantifiable (e.g. time spent performing role, number of roles occupied) (Scharlach 1994). This implies, from an interventional perspective, that ACCs may require support with managing specific roles (e.g. timeoff from employment, counselling with partner) rather than assistance with balancing all roles. Strengths and limitations While the scoping review methodology does not necessitate an assessment of methodological quality (Arksey & O’Malley 2005, Levac et al. 2010), some suggest that this detracts from the rigour of the findings and their uptake into policy and practice (Grant & Booth 2009, Brien et al. 2010). In turn, a strength of our review lies in the inclusion of an assessment and subsequent discussion of methodological quality. Additionally, we included both quantitative and qualitative research to obtain a comprehensive understanding of research in this field. By solely focusing on well-being, this review may have overlooked other outcomes and their correlates that are important © 2014 John Wiley & Sons Ltd

within the ACC population. By excluding interventional literature, the present review did not capture intervention-related factors that contribute to ACC well-being.

Conclusion This is the first review that has mapped the literature focusing on factors that contribute to ACC well-being. Factors were either: (i) care recipient-related; (ii) caregiver-related; or (iii) socially embedded. Our findings suggest that the parent–child relationship and the involvement in multiple roles are two socially embedded factors that uniquely contribute to the well-being of the ACC population. While it appears that highquality parent–child relationships contribute positively to well-being, it is not yet clear how these relationships may change and influence well-being over time. Inconsistency in the literature surrounding caregivers’ involvement in multiple roles suggests a need for further study. Specifically, a longitudinal focus on how roles may change quantitatively and qualitatively over time can inform future research and interventions that aim to provide time-specific supports to ACCs.

Acknowledgements This work was supported by a research grant from the Ontario Stroke System (Grant No. OSN1101000124). Jill Cameron is funded by a CIHR New Investigator Award.

Conflicts of interest No conflicts of interest declared.

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Metabolic Factors that Contribute to Lupus Pathogenesis.

Factors that influence career progression among postdoctoral clinical academics: a scoping review of the literature.

Factors Affecting Length of Stay in Adult Outpatient Physical Rehabilitation: A Scoping Review of the Literature.

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Risk factors for Barrett's esophagus: a scoping review.

'Did not attends' in children 0-10: a scoping review.

Mechanisms through which reciprocal filial values protect wellbeing of Chinese adult-child caregivers in the US.

International training programs on eating disorders for professionals, caregivers, and the general public: A scoping review.

Understanding the Burden on Caregivers of People with Parkinson's: A Scoping Review of the Literature.

Resident-to-Resident Abuse: A Scoping Review.

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Heritability of dietary traits that contribute to nephrolithiasis in a cohort of adult sibships.

Partnerships that Facilitate a Refugee's Journey to Wellbeing.

Factors affecting residents transition from long term care facilities to the community: a scoping review.

Environmental factors that contribute to upper eyelid ptosis: a study of identical twins.

Commitment to the wellbeing of children worldwide.

Caregivers of elderly relatives: spouses and adult children.

Restavèk children in context: Wellbeing compared to other Haitian children.

Neural factors contribute to atherogenesis.

An evolutionary medicine approach to understanding factors that contribute to chronic obstructive pulmonary disease.

Personal factors that contribute to or impair women's ability to achieve orgasm.