592461 research-article2015
APHXXX10.1177/1010539515592461Asia-Pacific Journal of Public HealthTan
46th APACPH Conference Supplement
Unmet Health Care Service Needs of Children With Disabilities in Penang, Malaysia
Asia-Pacific Journal of Public Health 1–11 © 2015 APJPH Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1010539515592461 aph.sagepub.com
Seok Hong Tan, MBBS, MPH1
Abstract Information on unmet health care needs reveal problems that are related to unavailability and inaccessibility of services. The study objectives were to determine the prevalence, and the reasons for unmet service needs among children with disabilities in the state of Penang, Malaysia. Caregivers of children with disabilities aged 0 to 12 years registered with the Penang Social Welfare Department in 2012 answered a self-administered mailed questionnaire. A total of 305 questionnaires were available for analysis (response rate 37.9%). Services that were very much needed and yet highly unmet were dental services (49.6% needed, 59.9% unmet), dietary advice (30.9% needed, 63.3% unmet), speech therapy (56.9% needed, 56.8% unmet), psychology services (25.5% needed, 63.3% unmet), and communication aids (33.0% needed, 79.2% unmet). Access problems were mainly due to logistic issues and caregivers not knowing where to obtain services. Findings from this study can be used to inform strategies for service delivery and advocacy for children with disabilities in Penang, Malaysia. Keywords access problems, children with disabilities, health care services, needs assessment, unmet needs
Introduction The Asia Pacific region is home to two-thirds of the estimated 650 million persons with disabilities in the world1 and the Global Burden of Disease study estimates that 1 in 20 children aged 14 years or younger live with a moderate or severe disability.2 The Convention on the Rights of the Child 1995 upholds the rights of a child with disability to receive health care and rehabilitation services in order for the child to achieve the fullest social integration and individual development. In 2012, members of the United Nations Economic and Social Commission for Asia and the Pacific (UN ESCAP), including Malaysia, adopted the Incheon Strategy to “Make the Right Real” for persons with disabilities in the region. In Malaysia, persons with disabilities (PWDs) are registered with the Department of Social Welfare (DSW) under 7 categories: visual, hearing, physical, learning (inclusive of persons with intellectual disability and those with learning difficulties such as autism and dyslexia), speech, 1University
Malaya, Kuala Lumpur, Malaysia
Corresponding Author: Seok Hong Tan, Department of Social and Preventive Medicine, Faculty of Medicine, University Malaya, 50603 Kuala Lumpur, Malaysia. Email: [email protected]
Downloaded from aph.sagepub.com at UNIV OF LETHBRIDGE on September 6, 2015
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Asia-Pacific Journal of Public Health
mental and multiple disabilities. By the end of 2012, the number of PWDs in the national registration system was 1.5% of the total Malaysian population3. Statistics prior to 2011 did not disaggregate the total number by age. In 2011 and 2012, approximately 20% to 25% of new registrations were children 12 years and younger. Prior to 1996, rehabilitation services were only in existence in Ministry of Health hospitals and teaching hospitals under the Ministry of Higher Education. Since then, rehabilitation services have been expanded to primary health care centers. Rehabilitation is also provided by nongovernmental organizations and community-based rehabilitation centers sponsored by the DSW. Need in health care is defined as the capacity to benefit,4 while need in relation to health services occur when the individual requires specific health care services and may benefit from fulfillment of this need.5 Health services reported to be most needed by children with disabilities are speech and language therapy, physical and occupational therapy, medical evaluations, nutrition and nursing care, and use of adaptive equipment.6 Unmet need for health services is used to capture the degree to which needed health services are not received2 and is an indication of access problems or the difficulties experienced in the process of obtaining care. Studies in developed countries have found the prevalence of unmet need for services to be less than 30%.7-9 The results of the 2009-2010 US National Survey of Children with Special Health Care Needs showed that 20.2% of children with special health care needs had an unmet need in one or more areas of primary and specialty care services, ancillary services, and assistive devices.9 However, unmet need for different types of services varies, with mental health services usually being the most unmet, and specialist physician services and special medical equipment the least unmet.10,11 In contrast, approximately 50% to 75% of children with disabilities in low- and middleincome countries are estimated to have unmet needs for rehabilitation services and 60% to 80% had unmet need for assistive devices.2 A study in South Africa revealed that 74% of children with disabilities who were judged to need physiotherapy, occupational therapy, and/or speech therapy by researchers, and 72% who needed assistive devices, did not receive them.12 Commonly cited service barriers can be grouped into sociodemographics, beliefs about disability and treatment, and service characteristics affecting access to care. Demographic and social structure is not easily changeable, while health beliefs have medium mutability13; therefore, in order to develop policy interventions to improve the health of children with disabilities, it is desirable to identify service characteristics that are modifiable. Service characteristics relate to skills and resources, logistics, and parent-provider relationship. Skills are a set of strategies to navigate the health care system14 while resources refer to the availability of services and competency of service providers. Caregivers in rural areas especially, had poor knowledge about available services.12 Others have reported a scarcity of health care professionals who have the necessary skills and knowledge about treatment modalities and approaches in managing children with disabilities.15,16 Logistic reasons for the low utilization of services include the cost of therapy, transport and distance problems, as well as the opportunity cost involved when caregivers have to forego employment.17,18 In addition, poor communication and bad experiences with service providers are problems in the parent-provider relationship that can affect parental engagement in the intervention process. The objective of this study was to describe the service needs and unmet needs of children with disabilities in Penang, Malaysia and to determine their reasons for unmet needs. Children with disabilities are an even more vulnerable group among persons with disabilities because children have the least direct control over what happens to them and have least direct access to available resources. Unmet needs are used to assess equity of access to health care across population subgroups and can serve as indicators of national or local government performance. Findings from this study can help inform service providers on which areas to prioritize in the provision and development of health services for children with disabilities in Malaysia. Downloaded from aph.sagepub.com at UNIV OF LETHBRIDGE on September 6, 2015
3
Tan
Methods The study received ethical clearance from an institutional review board (Medical Ethics Committee of University Malaya Medical Centre reference number 950.2). A sampling frame of children with disabilities aged 0 to 12 years registered with the Department of Social Welfare in Penang in 2012 was obtained. Children who were staying in residential welfare homes and without means of contacting the caregiver were excluded from the study. There were 1340 children with disabilities in the registry, consisting of 47 children with visual, 79 with hearing, 80 with physical, 936 with learning, 4 with speech and 194 with multiple disabilities. Disproportionate stratified sampling was applied; 400 children with learning disability were randomly selected and all children in the other disability categories were sampled in view of the small numbers in these categories. Data were collected through a self-administered questionnaire in the Malay language, with simplified Chinese translation. Respondents were asked whether their child had needed 10 types of services and 7 types of assistive devices in the past one year. They were then asked whether their child received those services/assistive devices (a) fully/all the time, (b) partially/sometimes, or (c) not at all. Respondents were also asked to indicate why their child did not receive needed services/assistive devices by answering yes/no to a list of access problems. A literature review of studies on service needs assessment of children with special health care needs was conducted earlier to identify questionnaire items and response options. Experts on the subject matter consisting of 4 pediatricians, 2 Ministry of Health staff, and 2 nongovernmental organization staff working with special needs children reviewed the item content of the questionnaire. A pretest of the questionnaire was carried out among 22 parents of children with disabilities attending a pediatric clinic in a tertiary government hospital to check understanding of the items. The study questionnaire, patient information sheet and written consent form were mailed to 804 caregivers, with a return-address envelope and stamp. To ensure the best response rate possible, the researcher contacted the participants by telephone 2 to 3 weeks after mailing the questionnaire. Three attempts at different days and time were made. Out of the total questionnaires sent out, 305 questionnaires (37.9%) were returned. Data were analyzed using SPSS version 20.0. In view of stratified sampling method, complex samples analysis was performed, with the cases weighted according to type of disability. Unmet need in this study was defined as not fully receiving a specific service or assistive device that was needed. First, the percentage of respondents who answered their child needed each service was determined then, out of those who answered their child needed the service, the percentage that did not fully receive the service was calculated. Analysis for different types of disability was also performed. Children with vision, hearing, speech and physical disability were grouped together under “other disability.” Number of services needed and number of services unmet for each child was totaled and then averaged over number of children in the respective three categories of learning, multiple and other disability. Finally, the percentage of respondents who indicated each access problem was determined.
Results Among the respondents, 41.3% had children with learning disability, 27.5% with multiple disabilities and 31.2% with sole visual, hearing, or physical disability (Table 1). The service that was needed most was the service of a specialist doctor, followed by speech therapist and occupational therapist (Table 2). Approximately 50% of children needed dental services and approximately a quarter needed psychology services. For assistive devices, communication aids were the most needed.
Downloaded from aph.sagepub.com at UNIV OF LETHBRIDGE on September 6, 2015
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Asia-Pacific Journal of Public Health
Table 1. Baseline Characteristics of Respondents (n = 305). Characteristic
n
Child’s age, years 0-3 33 4-6 65 7-12 206 Not answered 1 Child’s gender Male 192 Female 112 Not answered 1 Race Malay 193 Chinese 86 Indian 26 Others 0 Primary caregiver’s marital status Single 1 Married 280 Widowed 7 Separated/divorced 9 Not relevant (not the parents of the child) 6 Not answered 2 Primary caregiver’s highest education (mother/father or other caregiver) No education 4 Primary 22 Lower secondary 65 Upper secondary 147 College/university 66 Not answered 1 Household income (MYR/month)
APHXXX10.1177/1010539515592461Asia-Pacific Journal of Public HealthTan
46th APACPH Conference Supplement
Unmet Health Care Service Needs of Children With Disabilities in Penang, Malaysia
Asia-Pacific Journal of Public Health 1–11 © 2015 APJPH Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1010539515592461 aph.sagepub.com
Seok Hong Tan, MBBS, MPH1
Abstract Information on unmet health care needs reveal problems that are related to unavailability and inaccessibility of services. The study objectives were to determine the prevalence, and the reasons for unmet service needs among children with disabilities in the state of Penang, Malaysia. Caregivers of children with disabilities aged 0 to 12 years registered with the Penang Social Welfare Department in 2012 answered a self-administered mailed questionnaire. A total of 305 questionnaires were available for analysis (response rate 37.9%). Services that were very much needed and yet highly unmet were dental services (49.6% needed, 59.9% unmet), dietary advice (30.9% needed, 63.3% unmet), speech therapy (56.9% needed, 56.8% unmet), psychology services (25.5% needed, 63.3% unmet), and communication aids (33.0% needed, 79.2% unmet). Access problems were mainly due to logistic issues and caregivers not knowing where to obtain services. Findings from this study can be used to inform strategies for service delivery and advocacy for children with disabilities in Penang, Malaysia. Keywords access problems, children with disabilities, health care services, needs assessment, unmet needs
Introduction The Asia Pacific region is home to two-thirds of the estimated 650 million persons with disabilities in the world1 and the Global Burden of Disease study estimates that 1 in 20 children aged 14 years or younger live with a moderate or severe disability.2 The Convention on the Rights of the Child 1995 upholds the rights of a child with disability to receive health care and rehabilitation services in order for the child to achieve the fullest social integration and individual development. In 2012, members of the United Nations Economic and Social Commission for Asia and the Pacific (UN ESCAP), including Malaysia, adopted the Incheon Strategy to “Make the Right Real” for persons with disabilities in the region. In Malaysia, persons with disabilities (PWDs) are registered with the Department of Social Welfare (DSW) under 7 categories: visual, hearing, physical, learning (inclusive of persons with intellectual disability and those with learning difficulties such as autism and dyslexia), speech, 1University
Malaya, Kuala Lumpur, Malaysia
Corresponding Author: Seok Hong Tan, Department of Social and Preventive Medicine, Faculty of Medicine, University Malaya, 50603 Kuala Lumpur, Malaysia. Email: [email protected]
Downloaded from aph.sagepub.com at UNIV OF LETHBRIDGE on September 6, 2015
2
Asia-Pacific Journal of Public Health
mental and multiple disabilities. By the end of 2012, the number of PWDs in the national registration system was 1.5% of the total Malaysian population3. Statistics prior to 2011 did not disaggregate the total number by age. In 2011 and 2012, approximately 20% to 25% of new registrations were children 12 years and younger. Prior to 1996, rehabilitation services were only in existence in Ministry of Health hospitals and teaching hospitals under the Ministry of Higher Education. Since then, rehabilitation services have been expanded to primary health care centers. Rehabilitation is also provided by nongovernmental organizations and community-based rehabilitation centers sponsored by the DSW. Need in health care is defined as the capacity to benefit,4 while need in relation to health services occur when the individual requires specific health care services and may benefit from fulfillment of this need.5 Health services reported to be most needed by children with disabilities are speech and language therapy, physical and occupational therapy, medical evaluations, nutrition and nursing care, and use of adaptive equipment.6 Unmet need for health services is used to capture the degree to which needed health services are not received2 and is an indication of access problems or the difficulties experienced in the process of obtaining care. Studies in developed countries have found the prevalence of unmet need for services to be less than 30%.7-9 The results of the 2009-2010 US National Survey of Children with Special Health Care Needs showed that 20.2% of children with special health care needs had an unmet need in one or more areas of primary and specialty care services, ancillary services, and assistive devices.9 However, unmet need for different types of services varies, with mental health services usually being the most unmet, and specialist physician services and special medical equipment the least unmet.10,11 In contrast, approximately 50% to 75% of children with disabilities in low- and middleincome countries are estimated to have unmet needs for rehabilitation services and 60% to 80% had unmet need for assistive devices.2 A study in South Africa revealed that 74% of children with disabilities who were judged to need physiotherapy, occupational therapy, and/or speech therapy by researchers, and 72% who needed assistive devices, did not receive them.12 Commonly cited service barriers can be grouped into sociodemographics, beliefs about disability and treatment, and service characteristics affecting access to care. Demographic and social structure is not easily changeable, while health beliefs have medium mutability13; therefore, in order to develop policy interventions to improve the health of children with disabilities, it is desirable to identify service characteristics that are modifiable. Service characteristics relate to skills and resources, logistics, and parent-provider relationship. Skills are a set of strategies to navigate the health care system14 while resources refer to the availability of services and competency of service providers. Caregivers in rural areas especially, had poor knowledge about available services.12 Others have reported a scarcity of health care professionals who have the necessary skills and knowledge about treatment modalities and approaches in managing children with disabilities.15,16 Logistic reasons for the low utilization of services include the cost of therapy, transport and distance problems, as well as the opportunity cost involved when caregivers have to forego employment.17,18 In addition, poor communication and bad experiences with service providers are problems in the parent-provider relationship that can affect parental engagement in the intervention process. The objective of this study was to describe the service needs and unmet needs of children with disabilities in Penang, Malaysia and to determine their reasons for unmet needs. Children with disabilities are an even more vulnerable group among persons with disabilities because children have the least direct control over what happens to them and have least direct access to available resources. Unmet needs are used to assess equity of access to health care across population subgroups and can serve as indicators of national or local government performance. Findings from this study can help inform service providers on which areas to prioritize in the provision and development of health services for children with disabilities in Malaysia. Downloaded from aph.sagepub.com at UNIV OF LETHBRIDGE on September 6, 2015
3
Tan
Methods The study received ethical clearance from an institutional review board (Medical Ethics Committee of University Malaya Medical Centre reference number 950.2). A sampling frame of children with disabilities aged 0 to 12 years registered with the Department of Social Welfare in Penang in 2012 was obtained. Children who were staying in residential welfare homes and without means of contacting the caregiver were excluded from the study. There were 1340 children with disabilities in the registry, consisting of 47 children with visual, 79 with hearing, 80 with physical, 936 with learning, 4 with speech and 194 with multiple disabilities. Disproportionate stratified sampling was applied; 400 children with learning disability were randomly selected and all children in the other disability categories were sampled in view of the small numbers in these categories. Data were collected through a self-administered questionnaire in the Malay language, with simplified Chinese translation. Respondents were asked whether their child had needed 10 types of services and 7 types of assistive devices in the past one year. They were then asked whether their child received those services/assistive devices (a) fully/all the time, (b) partially/sometimes, or (c) not at all. Respondents were also asked to indicate why their child did not receive needed services/assistive devices by answering yes/no to a list of access problems. A literature review of studies on service needs assessment of children with special health care needs was conducted earlier to identify questionnaire items and response options. Experts on the subject matter consisting of 4 pediatricians, 2 Ministry of Health staff, and 2 nongovernmental organization staff working with special needs children reviewed the item content of the questionnaire. A pretest of the questionnaire was carried out among 22 parents of children with disabilities attending a pediatric clinic in a tertiary government hospital to check understanding of the items. The study questionnaire, patient information sheet and written consent form were mailed to 804 caregivers, with a return-address envelope and stamp. To ensure the best response rate possible, the researcher contacted the participants by telephone 2 to 3 weeks after mailing the questionnaire. Three attempts at different days and time were made. Out of the total questionnaires sent out, 305 questionnaires (37.9%) were returned. Data were analyzed using SPSS version 20.0. In view of stratified sampling method, complex samples analysis was performed, with the cases weighted according to type of disability. Unmet need in this study was defined as not fully receiving a specific service or assistive device that was needed. First, the percentage of respondents who answered their child needed each service was determined then, out of those who answered their child needed the service, the percentage that did not fully receive the service was calculated. Analysis for different types of disability was also performed. Children with vision, hearing, speech and physical disability were grouped together under “other disability.” Number of services needed and number of services unmet for each child was totaled and then averaged over number of children in the respective three categories of learning, multiple and other disability. Finally, the percentage of respondents who indicated each access problem was determined.
Results Among the respondents, 41.3% had children with learning disability, 27.5% with multiple disabilities and 31.2% with sole visual, hearing, or physical disability (Table 1). The service that was needed most was the service of a specialist doctor, followed by speech therapist and occupational therapist (Table 2). Approximately 50% of children needed dental services and approximately a quarter needed psychology services. For assistive devices, communication aids were the most needed.
Downloaded from aph.sagepub.com at UNIV OF LETHBRIDGE on September 6, 2015
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Asia-Pacific Journal of Public Health
Table 1. Baseline Characteristics of Respondents (n = 305). Characteristic
n
Child’s age, years 0-3 33 4-6 65 7-12 206 Not answered 1 Child’s gender Male 192 Female 112 Not answered 1 Race Malay 193 Chinese 86 Indian 26 Others 0 Primary caregiver’s marital status Single 1 Married 280 Widowed 7 Separated/divorced 9 Not relevant (not the parents of the child) 6 Not answered 2 Primary caregiver’s highest education (mother/father or other caregiver) No education 4 Primary 22 Lower secondary 65 Upper secondary 147 College/university 66 Not answered 1 Household income (MYR/month)
