HEALTH SERVICES
Estimating service demand for respite care among informal carers of people with psychological disabilities in Australia Meredith Harris,1,2 Sandra Diminic,1,2 Caroline Marshall,2 Emily Stockings,3 Louisa Degenhardt3,4,5,6
M
ental and substance use disorders are important drivers of disability, accounting for 7.4% of the total disability burden and nearly a quarter of all years lived with a disability worldwide in 2010.1 As the level of severity of mental disorder experienced by an individual increases, so too does the likelihood of impairment of their home management, social life, ability to work and relationships.2 In Australia, it is estimated that about 20% of the population will experience a mental or substance use disorder in a given year, including 2–3% who will experience a severe disorder (as judged by: type of diagnosis – primarily psychotic disorders and severe affective and anxiety disorders; intensity and duration of symptoms; and degree of social, personal and occupational impairment).3,4 Among people who experience severe disorders, the subgroup with persistent illness experience greater ongoing disability.5 The burden of mental and substance use disorders grew by almost 40% between 1990 and 2010, primarily due to population growth and ageing,1 indicating a significant and growing challenge for health care systems to accommodate the needs of persons living with mental health problems.6 In most developed nations, the shift away from institutionalised mental health care has resulted in increased emphasis on community-based clinics and home-based mental health care.7-9 Informal carers play an increasingly major role in the home-based
Abstract Objective: To estimate service demand (willingness to seek or use services) for respite care among informal, primary carers of people with a psychological disability and to describe their characteristics. Methods: Analysis of data from the household component of the 2009 Survey of Disability Ageing and Carers (n=64,213 persons). Results: In Australia in 2009, 1.0% of people aged 15 years or over (177,900 persons) provided informal, primary care to a co-resident with a psychological disability. One-quarter (27.2%) of these carers reported service demand for respite care, of whom one-third had used respite services in the past three months and four-fifths had an unmet need for any or more respite care. A significantly greater percentages of carers with service demand for respite care spent 40 or more hours per week on caregiving, provided care to a person with profound activity restrictions and reported unmet support needs, compared to carers without service demand. Lack of suitable, available respite care models was a barrier to utilisation. Conclusions: Findings confirm significant service demand for, and under-utilisation of, respite care among mental health carers. Implications: Increased coverage of respite services, more flexible service delivery models matched to carers’ needs and better integration with other support services are indicated. Key words: mental disorders, health services, respite care, disability
management of, and provision of care to, persons living with disabilities associated with mental disorders in the community.10-12 An informal carer is a person such as a family member or friend who provides regular and sustained care to the person requiring support, and whose services have not been arranged through a formal service organisation.10,11 Informal carers may experience significant social, financial, physical and psychological burden due to their caring
responsibilities.11,13-16 The role of respite care is to reduce this burden by taking temporary responsibility of the care recipient, or by providing the carer with personal relief from tasks.17,18 Internationally, respite services vary depending on funding sources and characteristics of the care providers.11 In Australia, major respite programs are overseen by government agencies but are often provided by non-government and other providers. The cost of services varies by provider, with some being provided
1. School of Public Health, The University of Queensland 2. Policy and Epidemiology Group, Queensland Centre for Mental Health Research, Queensland Health 3. National Drug and Alcohol Research Centre (NDARC), University of New South Wales 4. School of Population and Global Health, University of Melbourne, Victoria 5. Murdoch Children’s Research Institute, Victoria 6. Department of Global Health, School of Public Health, University of Washington, US Correspondence to: Ms Meredith Harris, QCMHR, Locked Bag 500, Sumner Park BC, Queensland 4074; e-mail: [email protected] Submitted: February 2014; Revision requested: May 2014; Accepted: October 2014 The authors have stated they have no conflict of interest. Aust NZ J Public Health. 2015; 39:284-92; doi: 10.1111/1753-6405.12337
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Demand for respite care
free, some charging a small co-payment and others charging according to income;19 however, some programs note that no one will be turned away because they are unable to contribute.20 Respite care may be formal or informal, residential (for short- or long-term periods) or provided in-home or out-ofhome. In Australia, respite care is increasingly community-focused, providing, for example, support for daily activities such as housework or transport to appointments, and short-term relief for several hours to enable the carer to complete other neglected tasks. Quantitative studies from several countries have demonstrated positive effects of mental health respite care on caregiver burden and quality of life.10,11,13-15,17 According to qualitative evidence, respite care is the service most desired by carers21 and levels of satisfaction are high among carers who use it;18,22 however, there is significant unmet need reflecting shortcomings in respite service flexibility and carer’s awareness of respite service availability.15,23,24 Despite their important place in the mental health services spectrum,11,22,25 relatively little population-level data is available to inform the development and planning of respite services.26 A population health approach to service planning requires the definition and enumeration of the population with a potential need for services.27 For this paper, the population with potential need for respite care is defined as primary, informal carers of people with a psychological disability. The term ‘psychological disability’ encompasses mental, emotional or nervous conditions that restrict everyday activities,28 acknowledging that the scope of care provision may include some who suffer significant daily impairment in the absence of a formal diagnosis.5,29 Although most respite programs are designed to focus on people with mental disorders (and intellectual disability and autism in some programs),20,30 many have a broader scope that includes people who are undiagnosed or at risk of mental illness.31-34 However, in an environment of scarce health resources, it may not be possible to provide services to all those with absolutely defined need, and not all those with need will use or want services – even if provided.35 Thus, it is reasonable to plan services for those who have service demand, which has been defined as “the willingness and/ or ability to seek, use and, in some settings, pay for services.”36 Service demand includes expressed service demand (as indicated
2015 vol. 39 no. 3
by service utilisation) and potential service demand (which may be indicated by reported unmet need).36 This paper presents data from the 2009 Survey of Disability and Carers (SDAC)37 describing service demand for respite care by informal carers of people with a psychological disability. It addresses three research questions: 1. What is the prevalence of caring and service demand for respite care, relative to other types of disabilities? 2. What are the demographic and caring role characteristics associated with service demand for respite care? 3. What are the potential barriers to use of respite care and other sources of support required, among carers with service demand for respite care?
Method Survey and sample The 2009 SDAC37 was conducted by the Australian Bureau of Statistics (ABS). The sample was derived using multi-stage sampling techniques. The survey scope was persons in urban and rural areas in all states and territories, living in private or nonprivate dwellings. It comprised a household component and a cared accommodation component. This paper reports data from the household component (n=64,213 persons) that were collected by trained interviewers via computer-assisted personal interviews.
Data items Defining the population with potential need for respite care Several pieces of information were needed to define the population with potential need: The primary carer: For the purposes of this paper, analyses were restricted to carers aged 15 years or older, who were identified as a primary carer and who were co-resident with the main recipient of care. The 2009 SDAC defines a primary carer as “a person who provides the most informal assistance, in terms of help or supervision, to a person with one or more disabilities or aged 60 years and over. The assistance has to be ongoing, or likely to be ongoing, for at least six months and be provided for one or more of the core activities (communication, mobility and selfcare)”.28(p34) Primary carers included persons aged 15 years or older who participated in a personal interview. Persons aged 15 to 17
years were only interviewed personally if parental permission was granted. The main recipient of care: Because a primary carer may care for more than one person, the main recipient of care was defined as the person “receiving the most help or supervision”.28(p32) Disability type: The 2009 SDAC defines a disability as “any limitation, restriction or impairment which restricts everyday activities and has lasted or is likely to last for at least six months.”28(p3) Disability types were grouped as follows: psychological (mental illness or condition requiring help or supervision and nervous or emotional condition that restricts everyday activities); intellectual (slow at learning or understanding); sensory and speech (loss of sight, speech difficulties and loss of hearing); physical restriction (breathing difficulties, restriction in physical activities or work, incomplete use of feet or legs, blackouts, fits or loss of consciousness, chronic or recurring pain or discomfort, incomplete use of arms or fingers, disfigurement or deformity and difficulty gripping or holding things); head injury, stroke or other brain damage; other disability types; and no disability.
Service demand for respite care The survey provided information about whether primary carers had used and/or had an unmet need for respite care in six categories: 1) Received respite care in last three months and does not need it further; 2) Received respite care in last three months but needs it further; 3) Did not receive respite care in last three months and does not need it; 4) Did not receive respite care in last three months but needs it; 5) Has never received respite care and does not need or want it; and 6) Has never received respite care but needs it. We used this information to derive three constructs for analysis: • Utilisation: used respite care in last three months (categories 1 and 2); did not use respite care in last three months (categories 3, 4, 5 and 6). • Unmet need: unmet need, regardless of utilisation (categories 2, 4 and 6); no unmet need (categories 1, 3 and 5). • Service demand: service demand, defined as having used respite care in the past three months and/or wanting it (categories 1, 2, 4 and 6); no service demand (categories 3 and 5).
Australian and New Zealand Journal of Public Health © 2015 Public Health Association of Australia
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Harris et al.
Article
Type of respite care used: For primary carers who had used respite care in the past three months, information was collected about the types of respite care used: day-care centre; inhome respite; residential respite; and respite service other than day-care centre, in-home or residential. Main reason primary carer has not used respite care: For primary carers who had not used respite care in the past three months, information was collected about the main reason for non-use: does not need service; respite care services not available in area; available services not suited to needs; no affordable services available; recipient or carer does not want service (recipient does not want service; carer does not want service); or other reason.
Other measures Hours of care provided: Data on weekly hours of care were provided in three categories (
Estimating service demand for respite care among informal carers of people with psychological disabilities in Australia Meredith Harris,1,2 Sandra Diminic,1,2 Caroline Marshall,2 Emily Stockings,3 Louisa Degenhardt3,4,5,6
M
ental and substance use disorders are important drivers of disability, accounting for 7.4% of the total disability burden and nearly a quarter of all years lived with a disability worldwide in 2010.1 As the level of severity of mental disorder experienced by an individual increases, so too does the likelihood of impairment of their home management, social life, ability to work and relationships.2 In Australia, it is estimated that about 20% of the population will experience a mental or substance use disorder in a given year, including 2–3% who will experience a severe disorder (as judged by: type of diagnosis – primarily psychotic disorders and severe affective and anxiety disorders; intensity and duration of symptoms; and degree of social, personal and occupational impairment).3,4 Among people who experience severe disorders, the subgroup with persistent illness experience greater ongoing disability.5 The burden of mental and substance use disorders grew by almost 40% between 1990 and 2010, primarily due to population growth and ageing,1 indicating a significant and growing challenge for health care systems to accommodate the needs of persons living with mental health problems.6 In most developed nations, the shift away from institutionalised mental health care has resulted in increased emphasis on community-based clinics and home-based mental health care.7-9 Informal carers play an increasingly major role in the home-based
Abstract Objective: To estimate service demand (willingness to seek or use services) for respite care among informal, primary carers of people with a psychological disability and to describe their characteristics. Methods: Analysis of data from the household component of the 2009 Survey of Disability Ageing and Carers (n=64,213 persons). Results: In Australia in 2009, 1.0% of people aged 15 years or over (177,900 persons) provided informal, primary care to a co-resident with a psychological disability. One-quarter (27.2%) of these carers reported service demand for respite care, of whom one-third had used respite services in the past three months and four-fifths had an unmet need for any or more respite care. A significantly greater percentages of carers with service demand for respite care spent 40 or more hours per week on caregiving, provided care to a person with profound activity restrictions and reported unmet support needs, compared to carers without service demand. Lack of suitable, available respite care models was a barrier to utilisation. Conclusions: Findings confirm significant service demand for, and under-utilisation of, respite care among mental health carers. Implications: Increased coverage of respite services, more flexible service delivery models matched to carers’ needs and better integration with other support services are indicated. Key words: mental disorders, health services, respite care, disability
management of, and provision of care to, persons living with disabilities associated with mental disorders in the community.10-12 An informal carer is a person such as a family member or friend who provides regular and sustained care to the person requiring support, and whose services have not been arranged through a formal service organisation.10,11 Informal carers may experience significant social, financial, physical and psychological burden due to their caring
responsibilities.11,13-16 The role of respite care is to reduce this burden by taking temporary responsibility of the care recipient, or by providing the carer with personal relief from tasks.17,18 Internationally, respite services vary depending on funding sources and characteristics of the care providers.11 In Australia, major respite programs are overseen by government agencies but are often provided by non-government and other providers. The cost of services varies by provider, with some being provided
1. School of Public Health, The University of Queensland 2. Policy and Epidemiology Group, Queensland Centre for Mental Health Research, Queensland Health 3. National Drug and Alcohol Research Centre (NDARC), University of New South Wales 4. School of Population and Global Health, University of Melbourne, Victoria 5. Murdoch Children’s Research Institute, Victoria 6. Department of Global Health, School of Public Health, University of Washington, US Correspondence to: Ms Meredith Harris, QCMHR, Locked Bag 500, Sumner Park BC, Queensland 4074; e-mail: [email protected] Submitted: February 2014; Revision requested: May 2014; Accepted: October 2014 The authors have stated they have no conflict of interest. Aust NZ J Public Health. 2015; 39:284-92; doi: 10.1111/1753-6405.12337
284
Australian and New Zealand Journal of Public Health © 2015 Public Health Association of Australia
2015 vol. 39 no. 3
Health Services
Demand for respite care
free, some charging a small co-payment and others charging according to income;19 however, some programs note that no one will be turned away because they are unable to contribute.20 Respite care may be formal or informal, residential (for short- or long-term periods) or provided in-home or out-ofhome. In Australia, respite care is increasingly community-focused, providing, for example, support for daily activities such as housework or transport to appointments, and short-term relief for several hours to enable the carer to complete other neglected tasks. Quantitative studies from several countries have demonstrated positive effects of mental health respite care on caregiver burden and quality of life.10,11,13-15,17 According to qualitative evidence, respite care is the service most desired by carers21 and levels of satisfaction are high among carers who use it;18,22 however, there is significant unmet need reflecting shortcomings in respite service flexibility and carer’s awareness of respite service availability.15,23,24 Despite their important place in the mental health services spectrum,11,22,25 relatively little population-level data is available to inform the development and planning of respite services.26 A population health approach to service planning requires the definition and enumeration of the population with a potential need for services.27 For this paper, the population with potential need for respite care is defined as primary, informal carers of people with a psychological disability. The term ‘psychological disability’ encompasses mental, emotional or nervous conditions that restrict everyday activities,28 acknowledging that the scope of care provision may include some who suffer significant daily impairment in the absence of a formal diagnosis.5,29 Although most respite programs are designed to focus on people with mental disorders (and intellectual disability and autism in some programs),20,30 many have a broader scope that includes people who are undiagnosed or at risk of mental illness.31-34 However, in an environment of scarce health resources, it may not be possible to provide services to all those with absolutely defined need, and not all those with need will use or want services – even if provided.35 Thus, it is reasonable to plan services for those who have service demand, which has been defined as “the willingness and/ or ability to seek, use and, in some settings, pay for services.”36 Service demand includes expressed service demand (as indicated
2015 vol. 39 no. 3
by service utilisation) and potential service demand (which may be indicated by reported unmet need).36 This paper presents data from the 2009 Survey of Disability and Carers (SDAC)37 describing service demand for respite care by informal carers of people with a psychological disability. It addresses three research questions: 1. What is the prevalence of caring and service demand for respite care, relative to other types of disabilities? 2. What are the demographic and caring role characteristics associated with service demand for respite care? 3. What are the potential barriers to use of respite care and other sources of support required, among carers with service demand for respite care?
Method Survey and sample The 2009 SDAC37 was conducted by the Australian Bureau of Statistics (ABS). The sample was derived using multi-stage sampling techniques. The survey scope was persons in urban and rural areas in all states and territories, living in private or nonprivate dwellings. It comprised a household component and a cared accommodation component. This paper reports data from the household component (n=64,213 persons) that were collected by trained interviewers via computer-assisted personal interviews.
Data items Defining the population with potential need for respite care Several pieces of information were needed to define the population with potential need: The primary carer: For the purposes of this paper, analyses were restricted to carers aged 15 years or older, who were identified as a primary carer and who were co-resident with the main recipient of care. The 2009 SDAC defines a primary carer as “a person who provides the most informal assistance, in terms of help or supervision, to a person with one or more disabilities or aged 60 years and over. The assistance has to be ongoing, or likely to be ongoing, for at least six months and be provided for one or more of the core activities (communication, mobility and selfcare)”.28(p34) Primary carers included persons aged 15 years or older who participated in a personal interview. Persons aged 15 to 17
years were only interviewed personally if parental permission was granted. The main recipient of care: Because a primary carer may care for more than one person, the main recipient of care was defined as the person “receiving the most help or supervision”.28(p32) Disability type: The 2009 SDAC defines a disability as “any limitation, restriction or impairment which restricts everyday activities and has lasted or is likely to last for at least six months.”28(p3) Disability types were grouped as follows: psychological (mental illness or condition requiring help or supervision and nervous or emotional condition that restricts everyday activities); intellectual (slow at learning or understanding); sensory and speech (loss of sight, speech difficulties and loss of hearing); physical restriction (breathing difficulties, restriction in physical activities or work, incomplete use of feet or legs, blackouts, fits or loss of consciousness, chronic or recurring pain or discomfort, incomplete use of arms or fingers, disfigurement or deformity and difficulty gripping or holding things); head injury, stroke or other brain damage; other disability types; and no disability.
Service demand for respite care The survey provided information about whether primary carers had used and/or had an unmet need for respite care in six categories: 1) Received respite care in last three months and does not need it further; 2) Received respite care in last three months but needs it further; 3) Did not receive respite care in last three months and does not need it; 4) Did not receive respite care in last three months but needs it; 5) Has never received respite care and does not need or want it; and 6) Has never received respite care but needs it. We used this information to derive three constructs for analysis: • Utilisation: used respite care in last three months (categories 1 and 2); did not use respite care in last three months (categories 3, 4, 5 and 6). • Unmet need: unmet need, regardless of utilisation (categories 2, 4 and 6); no unmet need (categories 1, 3 and 5). • Service demand: service demand, defined as having used respite care in the past three months and/or wanting it (categories 1, 2, 4 and 6); no service demand (categories 3 and 5).
Australian and New Zealand Journal of Public Health © 2015 Public Health Association of Australia
285
Harris et al.
Article
Type of respite care used: For primary carers who had used respite care in the past three months, information was collected about the types of respite care used: day-care centre; inhome respite; residential respite; and respite service other than day-care centre, in-home or residential. Main reason primary carer has not used respite care: For primary carers who had not used respite care in the past three months, information was collected about the main reason for non-use: does not need service; respite care services not available in area; available services not suited to needs; no affordable services available; recipient or carer does not want service (recipient does not want service; carer does not want service); or other reason.
Other measures Hours of care provided: Data on weekly hours of care were provided in three categories (
