DOI: 10.1111/j.1741-6612.2012.00637.x
Research Residential respite care is associated with family carers experiencing financial strain Christina Aggar and Susan Ronaldson Sydney Nursing School, The University of Sydney, Sydney, New South Wales, Australia
Ian D Cameron Rehabilitation Studies Unit, Royal Rehabilitation Centre Sydney, Ryde, New South Wales, Australia
Aim: Care services for older people are provided with the expectation of supporting carers in their caregiving role. The aim of the study is to investigate the association between the utilisation of care services by older people and the caregiving experience. Methods: Cross-sectional design, involving a cohort of family carers (n = 119) of frail older people (ⱖ70 years) enrolled in a clinical trial of frailty treatment in metropolitan Sydney from 2008 to 2011. The caregiving experience was measured in five domains: health, daily schedule, finance, family support and self-esteem (Caregiver Reaction Assessment tool). Results: Multivariate regression analysis demonstrated an association between the utilisation of residential respite care and financial strain (b = -0.613, P = 0.049), after controlling for functional ability, co-residence and age. Conclusion: There is a need to consider carers’ financial barriers and concerns in regards to the utilisation of respite care services. Key words: family carer, frail elderly, respite care.
Introduction The provision of care and support services to frail older people in a community setting, with the assistance from family, is considered a sustainable approach to address an the ageing population [1]. Providing care to a frail older person can have negative impacts [2], and result in poor health, decreased well-being [3,4] and low quality of life [5]. These detrimental aspects of providing care are a global concern because they affect the capacity of carers to maintain their role and level of support and often result in the institutionalisation of the frail older person [6]. In the past decade the rights of carers have been recognised in policy and legislation, with the focus on benefits, services and, more recently, employment [1]. A major concern is carers’ capacity to access aged care services to support them in their caregiving role [3,7]. Correspondence to: Dr Christina Aggar, Sydney Nursing School, The University of Sydney. Email: [email protected] Australasian Journal on Ageing, Vol 33 No 2 June 2014, 93–98 © 2012 The Authors Australasian Journal on Ageing © 2012 ACOTA
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In most developed countries, health-care systems offer subsidised care services to frail older people who require care planning and case management to facilitate independent living [8]. The range of aged care services offered varies, but generally includes: domestic and personal assistance, transport, home modifications, nursing care, counselling and various forms of respite care, including adult day programs and in-home and residential (institutional) respite. While the introduction and delivery of aged care services often rely upon the support of a family carer to coordinate and facilitate the services [9], carers may expect that they will be supported in the caregiving role [4]. While carers’ preferences may be considered in assessment and referrals for aged care services, there is evidence that the care services are provided to rather than negotiated with carers [10,11]. Some carers have reported experiencing frustration with being excluded from the care planning process [12]. Furthermore, carers are not generally and routinely assessed in regard to their own well-being and caregiving needs [13]. The Australian Government acknowledges carers’ contribution and their central role in maintaining the aged care system through respite programmes, counselling services and financial support [14]. While there is evidence that these support services improve carers’ sense of satisfaction and selfperception of their ability to provide care [15,16], decreases in carer burden and increases in well-being have not been demonstrated [17–19]. In addition, increased carer stress, depression levels and social isolation are associated with unmet need for support [20]. Investigating the interface between caregiving experiences and care services for older people living in the community will increase our understanding of carers’ support needs and their perceptions and preferences for aged care services. Therefore, the aim of this study was to describe the care services utilised by frail older people and investigate the impact of these services on the caregiving experience.
Methods The caregiving data presented and analysed in this crosssectional study were collected from the carers of participants enrolled in a randomised controlled trial, conducted from 2008 to 2011, investigating the treatment of frailty [21]. Data were collected prior to the implementation of the intervention. Participants in the clinical trial were community-living residents aged 70 years or older, who were frail and had recently 93
A g g a r
R o n a l d s o n
S ,
C a m e r o n
I D
been discharged from a service providing rehabilitation and aged health care. The frail older participants lived in metropolitan Sydney, Australia, were not currently receiving rehabilitation services, had no severe cognitive impairment, and were expected to live more than 12 months. Frailty was empirically derived according to Fried and colleagues’ criteria [22].
hours of care, need for respite and negative reactions to caregiving [30,31]. Co-residence and age are also associated with CRA outcomes [2]. Therefore, functional ability (measured by the Barthel Index) [32], co-residence and age were determined as covariates for analysis. The data were analysed using the Statistical Package for Social Sciences (spss Version 17).
Eligible carers were the nominated family member or friend who provided unpaid care and support to the frail older person. Carer support was defined as supervision, assistance with personal care, mobility and communication, emotional support, and practical and financial assistance. Permission was gained from the frail older person to contact their nominated carer. A questionnaire and information sheet was then posted to the carer, along with a reply paid envelope. Return of the questionnaire was implied consent. Ethical approval was granted by the relevant Health Research Ethics Committee (Protocol 0709-191M).
Descriptive statistics were used to present caregiver characteristics. Multiple linear regression was used to explore the association between utilisation of aged care services and the caregiving experience. Each of the five CRA subscales was considered separately as the dependent variable, with the use of domestic help, respite and personal care services (yes or no) as independent variables. Regression coefficients with and without the three confounders (co-residence, age and functional ability) were calculated. The chance of Type 1 errors arising from multiple comparisons is of no concern due to the exploratory nature of the study and the prespecification of the outcomes. Adjustment for multiple comparisons can be very conservative and not reveal potentially interesting findings.
Caregiving experience was measured using the Caregiver Reaction Assessment (CRA) [24]. This tool has been utilised in large samples of carers of persons with chronic conditions, physical and mental disabilities [23–25] and has undergone rigorous psychometric testing [26]. The CRA examines caregiving experience in the following five subscales: (i) daily schedule (five items) – impact of providing care on the carer’s usual activities; (ii) financial situation (three items) – financial strain resulting from the caregiving situation; (iii) health problems (four items) – energy and physical capacity; (iv) family support (five items) – perceived family support or abandonment; and (v) self-esteem (seven items) – self-worth, a positive caregiving reaction. Responses are rated on a five-point Likert scale: 1 = strongly disagree, 2 = disagree, 3 = neither agree nor disagree, 4 = agree, 5 = strongly agree. An unweighted mean score for each subscale is generated, ranging from 1.0 to 5.0. The self-esteem dimension is reversescored so that on all domains a higher score indicates more negative experiences. Carers were asked to indicate what aged care services were being utilised for the frail older person in their care. Aged care service provision was divided into three categories: domestic care, personal care and respite care. Domestic care included assistance with housework, shopping, property maintenance, transport assistance and paper work. Personal care included support from allied health (e.g. nursing) and assistance with self-care such as showering. Respite services included day, overnight and extended programmes (both residential and home-based). Classification into the three categories described above is based on activities of daily living and instrumental activities of daily living and has been used previously to group the range of aged care services available [27,28]. Confounding variables should be identified and their impact evaluated [29]. Frailty is generally characterised by decreased functional ability [22] predicts greater cost of care, increased 94
C ,
Green [33] outlined two rules of thumb for a minimum acceptable sample size for linear regression. To test the overall model, a recommended sample size is 50 + 8k, where k is the number of predictors. With the three independent variables, plus the confounders’ age, co-residence and functional ability there are six predictors, so the minimum sample size is 98. To test individual predictors, a sample size of 104 + k is required. Therefore, the sample size of 119, with three predictor variables and three confounders is adequate for the proposed regression.
Results Of the 165 eligible carers, 119 carers completed and returned the questionnaires. Of the carers who declined to participate (n = 46), 13% were wives, 11% husbands, 26% sons, 33% daughters, 11% other relatives and 7% friends. Carer demographic data including caregiving activities are presented in Table 1. The carers’ mean age was 67 years (SD = 14), and most were adult daughters (38%). The majority of these carers (75%) reported their health as good to excellent, and approximately a quarter (24%) provided care for more than 40 hours per week. The majority of carers (80%) provided transport assistance for their frail older relative. Assistance with communication (37%) and self-care (36%) were the least frequent support activities provided (Table 2). All CRA subscales were normally distributed. The family carers in this study indicated that the most negative caregiving experience (highest subscale score) was impact on their usual activities, causing a disruption to daily schedules. The lowest scored CRA item (the most positive caregiving experience) was self-esteem or self-worth (Table 2). Australasian Journal on Ageing, Vol 33 No 2 June 2014, 93–98 © 2012 The Authors Australasian Journal on Ageing © 2012 ACOTA
F a m i l y
c a r e r s
Table 1: Description of carer characteristics Carer Age Length of time in caregiving role
Total group (n = 119)
e x p e r i e n c e
f i n a n c i a l
Table 3: Regression analysis showing the relationship between community aged care service utilisation and the caregiving experience
Mean (SD), range (years) 67 (14), 37–94 5 (4), 0.3–27.0
Unstandardised coefficients† b
n (%) Sex Female Male Relationship to care recipient Spouse/partner Daughter Son Employment status Employed Retired Not working Perceived general health Excellent Very good Good Fair Poor Co-residence Yes No Hours of care per week
Research Residential respite care is associated with family carers experiencing financial strain Christina Aggar and Susan Ronaldson Sydney Nursing School, The University of Sydney, Sydney, New South Wales, Australia
Ian D Cameron Rehabilitation Studies Unit, Royal Rehabilitation Centre Sydney, Ryde, New South Wales, Australia
Aim: Care services for older people are provided with the expectation of supporting carers in their caregiving role. The aim of the study is to investigate the association between the utilisation of care services by older people and the caregiving experience. Methods: Cross-sectional design, involving a cohort of family carers (n = 119) of frail older people (ⱖ70 years) enrolled in a clinical trial of frailty treatment in metropolitan Sydney from 2008 to 2011. The caregiving experience was measured in five domains: health, daily schedule, finance, family support and self-esteem (Caregiver Reaction Assessment tool). Results: Multivariate regression analysis demonstrated an association between the utilisation of residential respite care and financial strain (b = -0.613, P = 0.049), after controlling for functional ability, co-residence and age. Conclusion: There is a need to consider carers’ financial barriers and concerns in regards to the utilisation of respite care services. Key words: family carer, frail elderly, respite care.
Introduction The provision of care and support services to frail older people in a community setting, with the assistance from family, is considered a sustainable approach to address an the ageing population [1]. Providing care to a frail older person can have negative impacts [2], and result in poor health, decreased well-being [3,4] and low quality of life [5]. These detrimental aspects of providing care are a global concern because they affect the capacity of carers to maintain their role and level of support and often result in the institutionalisation of the frail older person [6]. In the past decade the rights of carers have been recognised in policy and legislation, with the focus on benefits, services and, more recently, employment [1]. A major concern is carers’ capacity to access aged care services to support them in their caregiving role [3,7]. Correspondence to: Dr Christina Aggar, Sydney Nursing School, The University of Sydney. Email: [email protected] Australasian Journal on Ageing, Vol 33 No 2 June 2014, 93–98 © 2012 The Authors Australasian Journal on Ageing © 2012 ACOTA
bs_bs_banner
In most developed countries, health-care systems offer subsidised care services to frail older people who require care planning and case management to facilitate independent living [8]. The range of aged care services offered varies, but generally includes: domestic and personal assistance, transport, home modifications, nursing care, counselling and various forms of respite care, including adult day programs and in-home and residential (institutional) respite. While the introduction and delivery of aged care services often rely upon the support of a family carer to coordinate and facilitate the services [9], carers may expect that they will be supported in the caregiving role [4]. While carers’ preferences may be considered in assessment and referrals for aged care services, there is evidence that the care services are provided to rather than negotiated with carers [10,11]. Some carers have reported experiencing frustration with being excluded from the care planning process [12]. Furthermore, carers are not generally and routinely assessed in regard to their own well-being and caregiving needs [13]. The Australian Government acknowledges carers’ contribution and their central role in maintaining the aged care system through respite programmes, counselling services and financial support [14]. While there is evidence that these support services improve carers’ sense of satisfaction and selfperception of their ability to provide care [15,16], decreases in carer burden and increases in well-being have not been demonstrated [17–19]. In addition, increased carer stress, depression levels and social isolation are associated with unmet need for support [20]. Investigating the interface between caregiving experiences and care services for older people living in the community will increase our understanding of carers’ support needs and their perceptions and preferences for aged care services. Therefore, the aim of this study was to describe the care services utilised by frail older people and investigate the impact of these services on the caregiving experience.
Methods The caregiving data presented and analysed in this crosssectional study were collected from the carers of participants enrolled in a randomised controlled trial, conducted from 2008 to 2011, investigating the treatment of frailty [21]. Data were collected prior to the implementation of the intervention. Participants in the clinical trial were community-living residents aged 70 years or older, who were frail and had recently 93
A g g a r
R o n a l d s o n
S ,
C a m e r o n
I D
been discharged from a service providing rehabilitation and aged health care. The frail older participants lived in metropolitan Sydney, Australia, were not currently receiving rehabilitation services, had no severe cognitive impairment, and were expected to live more than 12 months. Frailty was empirically derived according to Fried and colleagues’ criteria [22].
hours of care, need for respite and negative reactions to caregiving [30,31]. Co-residence and age are also associated with CRA outcomes [2]. Therefore, functional ability (measured by the Barthel Index) [32], co-residence and age were determined as covariates for analysis. The data were analysed using the Statistical Package for Social Sciences (spss Version 17).
Eligible carers were the nominated family member or friend who provided unpaid care and support to the frail older person. Carer support was defined as supervision, assistance with personal care, mobility and communication, emotional support, and practical and financial assistance. Permission was gained from the frail older person to contact their nominated carer. A questionnaire and information sheet was then posted to the carer, along with a reply paid envelope. Return of the questionnaire was implied consent. Ethical approval was granted by the relevant Health Research Ethics Committee (Protocol 0709-191M).
Descriptive statistics were used to present caregiver characteristics. Multiple linear regression was used to explore the association between utilisation of aged care services and the caregiving experience. Each of the five CRA subscales was considered separately as the dependent variable, with the use of domestic help, respite and personal care services (yes or no) as independent variables. Regression coefficients with and without the three confounders (co-residence, age and functional ability) were calculated. The chance of Type 1 errors arising from multiple comparisons is of no concern due to the exploratory nature of the study and the prespecification of the outcomes. Adjustment for multiple comparisons can be very conservative and not reveal potentially interesting findings.
Caregiving experience was measured using the Caregiver Reaction Assessment (CRA) [24]. This tool has been utilised in large samples of carers of persons with chronic conditions, physical and mental disabilities [23–25] and has undergone rigorous psychometric testing [26]. The CRA examines caregiving experience in the following five subscales: (i) daily schedule (five items) – impact of providing care on the carer’s usual activities; (ii) financial situation (three items) – financial strain resulting from the caregiving situation; (iii) health problems (four items) – energy and physical capacity; (iv) family support (five items) – perceived family support or abandonment; and (v) self-esteem (seven items) – self-worth, a positive caregiving reaction. Responses are rated on a five-point Likert scale: 1 = strongly disagree, 2 = disagree, 3 = neither agree nor disagree, 4 = agree, 5 = strongly agree. An unweighted mean score for each subscale is generated, ranging from 1.0 to 5.0. The self-esteem dimension is reversescored so that on all domains a higher score indicates more negative experiences. Carers were asked to indicate what aged care services were being utilised for the frail older person in their care. Aged care service provision was divided into three categories: domestic care, personal care and respite care. Domestic care included assistance with housework, shopping, property maintenance, transport assistance and paper work. Personal care included support from allied health (e.g. nursing) and assistance with self-care such as showering. Respite services included day, overnight and extended programmes (both residential and home-based). Classification into the three categories described above is based on activities of daily living and instrumental activities of daily living and has been used previously to group the range of aged care services available [27,28]. Confounding variables should be identified and their impact evaluated [29]. Frailty is generally characterised by decreased functional ability [22] predicts greater cost of care, increased 94
C ,
Green [33] outlined two rules of thumb for a minimum acceptable sample size for linear regression. To test the overall model, a recommended sample size is 50 + 8k, where k is the number of predictors. With the three independent variables, plus the confounders’ age, co-residence and functional ability there are six predictors, so the minimum sample size is 98. To test individual predictors, a sample size of 104 + k is required. Therefore, the sample size of 119, with three predictor variables and three confounders is adequate for the proposed regression.
Results Of the 165 eligible carers, 119 carers completed and returned the questionnaires. Of the carers who declined to participate (n = 46), 13% were wives, 11% husbands, 26% sons, 33% daughters, 11% other relatives and 7% friends. Carer demographic data including caregiving activities are presented in Table 1. The carers’ mean age was 67 years (SD = 14), and most were adult daughters (38%). The majority of these carers (75%) reported their health as good to excellent, and approximately a quarter (24%) provided care for more than 40 hours per week. The majority of carers (80%) provided transport assistance for their frail older relative. Assistance with communication (37%) and self-care (36%) were the least frequent support activities provided (Table 2). All CRA subscales were normally distributed. The family carers in this study indicated that the most negative caregiving experience (highest subscale score) was impact on their usual activities, causing a disruption to daily schedules. The lowest scored CRA item (the most positive caregiving experience) was self-esteem or self-worth (Table 2). Australasian Journal on Ageing, Vol 33 No 2 June 2014, 93–98 © 2012 The Authors Australasian Journal on Ageing © 2012 ACOTA
F a m i l y
c a r e r s
Table 1: Description of carer characteristics Carer Age Length of time in caregiving role
Total group (n = 119)
e x p e r i e n c e
f i n a n c i a l
Table 3: Regression analysis showing the relationship between community aged care service utilisation and the caregiving experience
Mean (SD), range (years) 67 (14), 37–94 5 (4), 0.3–27.0
Unstandardised coefficients† b
n (%) Sex Female Male Relationship to care recipient Spouse/partner Daughter Son Employment status Employed Retired Not working Perceived general health Excellent Very good Good Fair Poor Co-residence Yes No Hours of care per week
