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Secondary Prevention of Disabilities in Cambodia Final Study Report 2007 1 Secondary Prevention of Disabilities in the Cambodian Provinces of Siem Reap and Takeo: Perceptions of and use of the health system to address health conditions associated with disability in children Report prepared for Handicap International Belgium by: Betsy VanLeit Prum Rithy Samol Channa 28 th February, 2007

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Secondary Prevention of Disabilities in Cambodia Final Study Report 2007 1

Secondary Prevention of Disabilities in the Cambodian Provinces of Siem Reap and Takeo:

Perceptions of and use of the health system to

address health conditions associated with disability in children

Report prepared for Handicap International Belgium by:

Betsy VanLeit Prum Rithy

Samol Channa

28th February, 2007

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TABLE OF CONTENTS ABBREVIATIONS LIST..........................................................................................................4 EXECUTIVE SUMMARY .......................................................................................................5 CAMBODIAN CONTEXT .....................................................................................................10

General Context ...................................................................................................................10 Health System in Cambodia.................................................................................................10

Private Health Care System .............................................................................................10 Public health care system in Cambodia ...........................................................................11

Disability in Cambodia ........................................................................................................12 Disability Patterns by Age, Gender, and Rural/Urban Residence ...................................12 Types of Disabilities ........................................................................................................13 Children with Disabilities ................................................................................................13

GAP IDENTIFIED ..................................................................................................................14 Focus on Children ................................................................................................................14 Focus on Specific Provinces ................................................................................................15 Needed Information .............................................................................................................15

STUDY METHODOLOGY ....................................................................................................16 Questionnaire Development.................................................................................................16 Informed Consent.................................................................................................................17 Study Participants: ...............................................................................................................17

Households Where there was a Child with a Disability ..................................................17 Study Participant Households without Children with Disabilities ..................................18

Study Procedures .................................................................................................................19 Data Analysis .......................................................................................................................19

STUDY RESULTS..................................................................................................................20 Demographics of Survey Respondents ................................................................................20 Impairments and Functional Difficulties .............................................................................22

Child Attendance at School .............................................................................................24 History of Disability ............................................................................................................24

Causes of Health Difficulty .............................................................................................24 Health services used since time that health problem was observed.................................27

Additional Information ........................................................................................................32 General Health Perceptions of the Health System...............................................................33

Traditional and Western Health Choices .........................................................................35 Perceived Barriers to Care ...............................................................................................35 Perceptions of People with Disabilities ...........................................................................36

STUDY LIMITATIONS .........................................................................................................36 DISCUSSION OF STUDY RESULTS ...................................................................................36

Demographic Considerations...............................................................................................37 Impairment and functional status of children: inadequate use of existing resources ..........37 Impairment and functional status of children: Gaps in service and resources.....................38 History of disabling conditions and barriers to care ............................................................39 Pregnancy, maternal care and environment: impact on children’s conditions ....................40

MAJOR ISSUES IDENTIFIED ..............................................................................................41 Maternal care and environment: adverse impact on children’s conditions: ........................41 History of disabling conditions: barriers to care..................................................................41 Functional status of children: gaps in availability and use of services and resources .........42 Demographic considerations and issues ..............................................................................42

RECOMMENDATIONS.........................................................................................................42 Direct Action........................................................................................................................42 Cultivation of Health Partnerships.......................................................................................43

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Strengthening the Capacity and Coordination of the Public Health System .......................43 HIB’s proposed role in secondary prevention efforts ..........................................................44

SUMMARY OF THE CONTINUUM OF LEVELS OF HEALTH CARE............................45 ANNEX 1.................................................................................................................................46 ANNEX 2.................................................................................................................................47 ANNEX 3.................................................................................................................................48 ANNEX 4.................................................................................................................................54 ANNEX 5.................................................................................................................................57 ANNEX 6.................................................................................................................................58

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ABBREVIATIONS LIST ABC Association for Blind Cambodians BTC Belgian Technical Cooperation CABDICO Capacity Building of People with Disability in the Community Organization CDHS Cambodian Demographic and Health Survey CDPO Cambodian Disabled People’s Organization CHHRA Cambodian Health and Human Rights Alliance CMVIS Cambodian Mine Victim Information Service CPA Complementary Package of Activities CSES Cambodian Socio-Economic Survey DAC Disability Action Council DFID Department for International Development DPM Department of Preventive Medicine, Ministry of Health HIB Handicap International Belgium INGO International Non-Governmental Organization LNGO Local Non-Governmental Organization MOH Ministry of Health MOP Ministry of Planning MPA Minimum Package of Activities NCDP National Centre of Disabled Persons NGO Non-Governmental Organization NIS National Institute of Statistics NMCHC National Maternal & Child Health Centre PHD Provincial Health Department PRC Physical Rehabilitation Centre PWD People with Disabilities OD Operational District RH Referral Hospital RTAVIS Road Traffic Accident and Victim Information Service TBA Traditional Birth Attendant UNESCAP United Nations Economic Social Commission in Asia and the Pacific UNICEF United Nations Children’s Fund URC University Research Company USAID United States Agency for International Development VHSP Villagers’ Health Support Group WB World Bank WHO World Health Organization

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EXECUTIVE SUMMARY Background on Disability in Cambodia: The disability prevalence rate in Cambodia is estimated at 4.7% of the population1, meaning that more than half a million Cambodians have a disability. Almost half of the population with a disability is under 20 years of age. This is concerning because disability early in life can have a negative impact on school attendance, quality of life and productivity for many years to come. Factors in Cambodia that put children at particular risk for disability include lack of antenatal care or skilled delivery assistance for pregnant women (which may lead to congenital conditions), as well as serious childhood illnesses (e.g. acute respiratory illness, fever and diarrhea) that are often untreated by trained health providers2. Vaccination rates are still low for poor children, and analyses of height and weight measurements indicate that many children are stunted or underweight3. Cambodia still has a high infant and early childhood mortality rate compared to the rest of the region4, suggesting that young children are quite vulnerable to disease and injury. Rationale for the HIB Disability Study: Although it is clear that problems during early childhood may lead to disability, we wanted to know what the critical historical health factors were in households with an identified child with a disability. Thus, we undertook a survey of 500 households in the provinces of Siem Reap and Takeo where there was a child with a disability. We asked questions to learn what caused the disability, how the family had used the health system, and how they perceived the services they had used. All families signed an informed consent form before we administered the interviews. We also surveyed 500 neighboring households where there was not a child with a disability to learn additional information about community perceptions of the health system. HIB Study Results: The following description highlights study findings from the 500 households where there was a child with a disability as well as the 500 additional general household interviews in Siem Reap and Takeo. The data from the two provinces were aggregated after an initial analysis indicated that results were similar for both locations. Demographics of Respondent Households (500 households with a child with a disability) Most (71%) of the survey respondents in the households where there was a child with a disability were the mothers. The children ranged in age from infancy to 18 years old, and 47% of them were 7-14 years old. Somewhat more than half of the children were boys. Most of the parents identified themselves as farmers, and many (47%) reported having no education. Respondent households were poor; in fact 48% of them reported making less than 4000 riels per day (the equivalent of 1 US dollar). The typical household in the survey had 4-9 family members living at home. 1 Knowles, JC (2005). Health, Vulnerability and Poverty in Cambodia: Analysis of the 2005 Cambodia Socio-Economic Survey 2 National Institute of Public Health and National Institute of Statistics [Cambodia] and ORC Macro. (2006). Cambodia Demographic and Health Survey 2005. Phnom Penh and Calverton, Maryland, USA. 3 Ibid. 4 World Bank (2006) HNP at a Glance: Cambodia (accessed on World Bank website on 1/07)

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Children’s Impairments and Functional Difficulties (500 households) A quarter of the children with disabilities had difficulty seeing (ranging from mild visual impairment to blindness). Almost none of the children wore glasses. Similarly, a quarter of the children had difficulty hearing (ranging from mild hearing difficulty to deafness). Approximately 42% of the children had difficulty with mobility, but only half of that group had some type of walking aid (wheelchair, prosthesis, etc.). Many respondents reported that they did not know where to get needed equipment, or they were concerned about cost. Parents also reported that a significant number of children had trouble speaking, understanding when others were speaking, playing or talking to others, learning at school, remembering or concentrating on tasks, and holding and using objects with their hands. A surprisingly large proportion of children had difficulty with activities because of emotional problems (53%) or pain (42%). Of the school-aged children, 55% had attended some school, but most of them only attended one or two grades. History of Disability (500 households) Respondents could give more than one answer concerning the illness or injury that led to their child becoming disabled. A large percentage of respondents (40%) reported that their child had something wrong at birth (congenital condition). Sickness was identified as a causal factor in the child’s disability for 46% of households. More than half of those who reported sickness as a major problem stated that the disease involved fever, often accompanied by convulsions. The next most commonly reported cause was accidents. A large percentage of respondents (43%) stated that the child’s health condition that led to disability started within the first month of life, and 70% indicated that the problem had started within the first year. Families used a variety of services when their child developed a health condition including hospitals, health centres, private facilities and providers, pharmacies, traditional healers, rehabilitation centers and village health volunteers. Generally reported satisfaction was highest for hospitals, but there was a range of satisfaction with each type of service used. A large proportion (67%) of respondents stated that they wished they had used additional health services for their children, especially hospitals. The main barriers to service use included the costs of transportation, health services, and medications; costs associated with missing work or buying food; lack of knowledge about relevant services or how to access them; and distance to facilities. In summarizing, parents suggested that the reasons their children eventually developed permanent disabilities had to do with financial costs, poor or inadequate treatment, bad karma, bad luck and a lack of knowledge of the health care system. Over half (56%) of the mothers of the children with disabilities reported receiving no antenatal care, and of those who did, 52% was provided by midwives and 25% was provided by traditional birth attendants (TBAs). A similar proportion (56%) had no postnatal care. most of the antenatal care that did occur was provided by TBAs. Many (62%) of the mothers stated that their children had problems in infancy, and as described earlier, the problems often were associated with high fever and convulsions. In addition, most of the respondents (62%) reported obtained their water from unprotected sources, and only 10% had indoor plumbing or an outhouse, suggesting that basic sanitation was an issue in many households. General Perceptions of the Health System (data from all 1000 households) About three quarters of the respondents felt that their community was most susceptible to illness and injury because of poor sanitation, poverty and poor nutrition. They reported getting their information about health predominantly from television, radio, village meetings, posters (more so in Takeo than Siem Reap), and friends and neighbors. Many felt that access to and quality of health services was adequate or good, but many also felt that costs were

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high. More than half of respondents reported that they would choose to take a sick family member to the hospital (62%) or health centre (58%). A large percentage (82%) would choose to take an injured family member to the hospital and 50% would take an injured family member to the health centre. However, the cost barrier (for transportation, care, food, medicine and lost work time) was viewed as prohibitive by most respondents. We also asked respondents which conditions were effectively treated by traditional healers and which were effectively treated by western style providers. Respondents preferred traditional healers for broken bones. For all other conditions, western providers were preferred. Issues Identified from Study Results

• Many children who end up with permanent disabling conditions have congenital problems (associated with lack of antenatal and postnatal care, or treatable health problems) very early in life

• Families do not seek needed treatment because they are concerned about costs, don’t

know what services are available, or don’t realize that conditions in early infancy can lead to permanent disability (and may be treatable)

• There are currently very limited services available to help infants and children with

developmental disabilities, and many do not end up attending school

• Parents of children with disabilities have limited education, time and money to address their children’s needs and may not be aware of existing resources

Recommended Approach Secondary prevention is the critical bridge that connects primary health care and rehabilitation. In secondary prevention, health problems are identified early, and services and referrals are provided to assure rapid, effective interventions that minimize the possibility of permanent disability. In order to respond to the issues identified in the previous section, we propose the following activities: Direct Action There is a need for screening and early detection training activities: Local health providers such as Village Health Support Group Volunteers, TBAs, and Health Centre staff need to be able to:

• Recognize serious illness and injury and refer children to hospitals for treatment • Recognize congenital or other childhood developmental problems and refer families

to community-based early intervention services (as they become available) • Recognize serious congenital or other childhood developmental problems and refer

families to targeted hospitals that have expertise in early childhood evaluation and intervention as appropriate

There is a need for community-based early intervention services: Families of children with disabilities need low-cost, local, simple interventions and solutions to help their children function as effectively as possible. Early intervention activities need to be participatory and empowering, so that families become actively involved in decision-making and problem-solving concerning the needs of their children. The goal is for the families to evolve into effective self-help groups.

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There is a need for education concerning how to use the health system: Families need to know what types of services are actually relevant and available, and how to access financial support for services or identify services that are free of charge. Cultivation of Health Partnerships There is a need for organizations involved in activities to improve maternal and child health outcomes to communicate and collaborate well It is impossible to overstate the importance of collaboration in the health sector to synergistically strengthen and develop a web of coordinated services that meet prevention needs. Effective partnerships in the health system will better support families in need of services. These partnerships need to include international organizations, local NGOs, and government facilities and providers. The end result of increased collaboration will be a more seamlessly provided continuum of services. There is a need to for communication and coordination between organizations addressing the needs of children with disabilities in different sectors (e.g. rehabilitation and education) The needs of children with disabilities do not neatly fit any particular sector boundaries and are actually multi-dimensional. For example, organizations involved in advocating for mainstreaming of children with disabilities in the schools need to work closely with organizations involved in rehabilitation in order to assure positive educational outcomes for children with disabilities. Strengthening the Capacity and Coordination of the Public Health System There is a need for the MOH to take the lead in assuring an effective continuum of health services to prevent avoidable disability The Department of Preventive Medicine in the MOH is the appropriate governmental body to assume leadership in assuring secondary prevention action in the health sector. By taking responsibility for secondary prevention, the MOH can then instruct the Public Health Department (PHD) concerning health service provision. There is a need to address issues of financial cost in the health system Cost of services, transportation, food etc. are clearly critical to decision-making concerning using health services. It will be tremendously helpful if the evolving health equity fund system provides funding for the kinds of services needed in secondary prevention, covers associated costs (e.g. transportation) and is clearly communicated to those in need of financial support to use the health care system. There is a need for different departments in the MOH to work closely together to address secondary prevention needs There are close links between maternal health, child health and disability prevention. The National Maternal and Child Health Centre is responsible for addressing concerns about maternal mortality, and focusing attention on antenatal, delivery and postnatal care issues. It is clear that these maternal concerns also impact the health of and prevention of disability in infants.

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SUMMARY OF THE CONTINUUM OF LEVELS OF HEALTH CARE PRIMARY PREVENTION SECONDARY PREVENTION TERTIARY PREVENTION

(REHABILITATION) Prenatal and postnatal care are provided regularly to women Local providers receive training from NGOs to improve the quality of prenatal and postnatal care Local providers (health centres, TBAs etc.) can refer women for health services if the pregnancy seems to be high risk in any way Pregnant women need to have adequate nutrition and sanitation and shelter while they are pregnant Barriers to services (access and cost) are addressed adequately in the health system The referral system is functional so that families obtain and can follow through with referrals The Ministry of Health recognizes the relationship of primary, secondary and tertiary prevention, and advocates for health services on a continuum

Women are encouraged to deliver babies while accompanied by skilled providers Local providers are trained to refer women for health services if the delivery has problems or the newborn has a congenital condition or becomes ill or injured Doctors and nurses at identified hospitals have specialized training in recognizing and treating congenital conditions or health problems that manifest early in life Community-based providers have training to provide early intervention services to families and to foster self-help groups Community-based providers are knowledgeable about other resources that may benefit families, and make referrals as appropriate (e.g. to the PRC for mobility devices) Families know the importance of seeking immediate attention if the newborn or infant becomes ill Barriers to services (especially access and cost) are addressed adequately The Ministry of Health recognizes secondary prevention as an important component of an effective healthcare system and facilitates the development of secondary prevention

Providers trained in rehabilitation provide appropriate services to young children with disabilities (including technical services for children with clubfoot, cerebral palsy, etc.) Outreach workers provide community-based rehabilitation services to children and families Families are made aware of all of the services that might benefit their child with a disability, even in early infancy Families are encouraged to send their child with a disability to school The school system recognizes that children with disabilities should receive an education, and works to overcome barriers that may hinder school participation (e.g. need for special accommodations and equipment) Barriers to service (e.g. cost and transportation) are addressed adequately so that families can actually use them

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CAMBODIAN CONTEXT General Context Cambodia currently ranks 129th out of 177 of countries in the United Nations Human Development Index (HDI), and 73rd among 102 developing countries for the Human Poverty Index (HPI-1)5. Many aspects of Cambodian society were effectively destroyed by about 500,000 tons of American bombs between 1972 and 1974 and the Khmer Rouge regime that followed during which more than 1.5 million out of 7 million people died. This was followed by the Vietnamese liberation-occupation that ended officially with the Paris Peace Accords of 1991. Only during the past 10 years has the country has entered a period of stability, and achieved economic growth of about 7.4% per annum.6 For many rural Cambodians, living conditions have failed to improve, and in many cases have worsened in the face of growing inequalities, e.g. in terms of asset ownership. The health dimension is an important factor in this regard. Access to health care is reported as the first reason for impoverishment in Cambodia7. The public service has difficulties providing adequate health care, and a lack of transparency in the handling of the state budget hampers the development of government services. With a health sector that has many basic needs, disability related issues are not seen as a priority, and rehabilitation services often rely on external assistance to function8. There are about 13 million people in Cambodia, with an annual growth rate between 1998 and 2004 of 1.8%9 (refer to annex 1). There has been a high birth rate in recent years, and children make up almost half of the population. Over 84% of Cambodians live in rural areas, and the average population density is 74 inhabitants per kilometer. Most rural Cambodians make their living growing rice. At present, 35% of Cambodians live below the poverty line10. Health System in Cambodia The Cambodian healthcare system has a formal public component, and a private, informal component11. Cambodians actively use both systems, so it is necessary to give some consideration to their individual structure and function while recognizing that there is limited communication between them. Private Health Care System Rural Cambodians are most likely to use the private health care system12. Unregulated private clinics are common, and private practitioners (who often lack training in pharmacy or healthcare) are rarely regulated by the Ministry of Health. Treatment commonly consists of injections as well as oral medications that are often self-prescribed. Traditional medicine is also practiced extensively in Cambodia, especially in the rural areas. Traditional healers called Kru Khmer, are often consulted first or solely by villagers in need of healthcare.

5 United Nations Development Programme (2006). Human Development Report 2006. New York: Palgrave Macmillan. 6 World Bank Report (2006). Cambodia: Halving Poverty by 2015? Poverty Assessment 2006 7 ibid 8 Gregson KJ., Sandhy, S., Vien, K., & Soeng, S. (2006). Evaluation of the Physical Rehabilitation Sector in Cambodia 9 Cambodian Ministry of Planning, National Institute of Statistics (2004). The 2004 Cambodia Socio Economic Survey Report. Phnom Penh. 10 World Bank (2005). World Development Report 2006 Overview : Equity and Development. New York: Oxford University Press. 11 Van de Put (DATE ?). Empty hospitals, thriving business : Utilization of health services, and health seeking behaviour in two Cambodian districts. Report on Medical Anthropological Research in Cambodia. 12 Cambodian Ministry of Planninng, National Institute of Statistics (2004). The 2004 Cambodian Socio-Economic Survey Report. Phnom Penh.

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Traditional healers will often provide services on a barter basis, and are flexible in the amount of payment they expect. This is important to poor people who may have little income to spend on health care. Public health care system in Cambodia In August 2002, the Ministry of Health (in agreement with objectives set out by of the Association of South East Asian Nations or ASEAN) adopted a Strategic Plan of the Health Sector for 2003–200713. The plan espoused pro-poor policies, and emphasized the following areas: health services delivery; behavioural change of health providers; quality improvement; human resources development; health financing; and institutional development. The health services delivery priorities that are most pertinent to primary and secondary prevention efforts include the following objectives:

1. To further improve coverage and access to health services especially for the poor and other vulnerable groups through strategic location of health facilities.

2. To strengthen the delivery of quality basic health services through health centres based on Minimum Package of Activities

3. To strengthen the delivery of quality care, especially for obstetric and pediatric care, in all hospitals through measures such as the Complementary Package of Activities

A series of health sector reforms beginning in 1996 led to the current National Health Coverage Plan (NHCP) that is provided in 73 Operational Districts (ODs)14. The Provincial Health Department (PHD) is the administrative structure that manages the ODs. (See organization chart of Provincial health department in annex 2) Each OD is responsible for a network of health centres providing a Minimum Package of Activities (MPA) and referral hospitals (district and provincial level) that provide a Complementary Package of Activities (CPA). There are 3 levels of CPA provision, with provincial hospitals (CPA 3) providing the largest array of specialty and ancillary services. In the CPA 2 hospitals (typically district level) and CPA 3, the following services are recommended for the end of 2007: community based rehabilitation, health education, and some physical rehabilitation. It is clear that such a system of health centres and hospitals requires an effective referral system to function well, and there is currently an ongoing study by the URC Health Sector Strengthening Project to examine how well the referral system is operating15. At the community level, commune councils have the responsibility of overseeing the function of the health centres, and primary health care is supposed to be administered with guidance from a Villagers’ Support Group for Health whose members operate on a volunteer basis. Health centre catchment areas cover 7-14,000 people, and each Health Centre typically has 6-12 employees (typically including 2 levels of nurses, and 2 levels of midwives). Supported by international donors, health equity funds are cash benefits designed to improve access for the poor to the public health system16 17. There are currently a number of different equity fund projects around the country. Some require pre-registration and some do not. Different plans cover different costs which may include various components of care and/or transportation. Health equity funds encourage the poor to use the public health system, and 13 Strategic Plan 2003-2007 of the Health Sector of the Ministry of Health, August 2002 14 HLSP Consulting Asia (2002). Final Report: Provision of Basic Health Services in the Provinces of Siem Reap and Odor Meanchey, Cambodia, July 2002 15 Draft Guidelines for Referral Systems in Cambodia, August 2005 16 Meesen, B., Van Damme, W., Tashobya, CK., & Tibouti, A. (2006). Poverty and user fees for public health care in low-income countries: lessons from Uganda and Cambodia. The Lancet, 368, pp 2253-2257. 17 Ministry of Health, World Health Organization and Belgian Technical Cooperation (2006). Report: Health Equity Fund Forum, 01-03 February 2006. Phnom Penh.

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they also serve as a financial incentive for public health providers to treat, as the equity funds boost the income of the hospitals and the budget for staff bonuses. Disability in Cambodia A recent national socio-economic survey identified the disability prevalence rate at 4.7% of the population18, which suggests that more than half a million Cambodians are disabled. Disability Patterns by Age, Gender, and Rural/Urban Residence The 2004 CSES data indicates that reported disability rates increase with age. However, Cambodia has a young population, so actual numbers tell a different story. Although almost 41% of those 75 or over have a disability, they only account for 1.3% of the disabled population in Cambodia, and conversely, although only 1.1% of 0-4 year olds have a disability, they account for 9.9% of all disabilities19 Table A. Mean percentages of the population with one or more reported disabilities by age, 2004

Age group Male Female Urban Rural Total

Population distribution

(%) 0-4 years 1.3 0.9 0.7 1.2 1.1 9.9 5-9 years 1.2 0.9 0.7 1.1 1.1 11.9 10-14 years 1.5 1.4 0.8 1.5 1.4 14.5 15-19 years 1.7 1.3 0.7 1.6 1.5 12.3 20-24 years 1.7 1.8 1.2 1.9 1.8 10.6 25-34 years 3.7 3.0 2.8 3.4 3.3 12.6 35-44 years 7.1 4.6 4.4 6.0 5.8 11.4 45-54 years 10.5 8.8 7.3 9.9 9.5 8.1 55-64 years 13.7 17.3 14.3 16.1 15.8 4.9 65-74 years 25.9 29.4 27.6 28.0 27.9 2.9 75 and more 41.0 40.6 30.2 42.7 40.8 1.3

Total 4.5 4.9 4.0 4.9 4.7 100.0 Source: 2004 CSES (15-month sample), Reported in Knowles (2005). The main reported causes of disability include old age (27%) and disease (26%). Knowles grouped health-related causes together and found that they accounted for 35% of all reported disabilities20. An analysis of causes of disability indicates that there is variation by age, gender and rural or urban residence. For example, accidents/injuries are most common among working age males, reported non-communicable diseases (e.g. diabetes and hypertension) increase with age, and communicable diseases are more commonly reported by rural residents and the poor. The poor report most common causes of disability as including: mines/UXO, malnutrition, violent attacks, domestic violence, mental trauma and bad luck, whereas the rich report major causes of disability as including: old age, traffic accidents and disease21. Table B. Distribution of the reported causes of disabilities by sex and by urban-rural residence, 2004 Reported cause of disability Male Female Urban Rural Total

Mine, UXO 6.4 0.8 2.3 3.6 3.4 Traffic accident 3.4 2.2 4.2 2.6 2.8 Work accident 5.6 2.1 3.3 3.8 3.7 Disease 23.8 27.5 25.5 25.8 25.8 Old age 22.2 30.6 30.5 26.2 26.7

18 Knowles, JC (2005). Health, Vulnerability and Poverty in Cambodia: Analysis of the 2005 Cambodia Socio-Economic Survey 19 Ibid. 20 Ibid, p 7. 21 Ibid, p 8.

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Reported cause of disability Male Female Urban Rural Total Congenital 9.4 8.0 7.9 8.8 8.7 Fever 5.8 5.9 2.7 6.3 5.9 Difficult obstetric delivery 0.0 2.6 0.7 1.5 1.4 Chemical accident 0.5 0.4 0.3 0.5 0.5 Rape 0.0 0.0 0.0 0.0 0.0 Violent attack 0.3 0.3 0.6 0.2 0.3 Domestic violence 0.1 0.7 0.4 0.4 0.4 Suicide attempt 0.2 0.0 0.0 0.1 0.1 Mental trauma 1.0 1.4 1.4 1.2 1.2 War injuries 6.1 1.0 4.2 3.2 3.3 Malnutrition 1.2 2.8 1.3 2.2 2.1 Burns 0.4 0.1 0.3 0.2 0.2 Torture 0.1 0.2 0.0 0.2 0.2 Bad luck 1.4 1.1 1.2 1.3 1.3 Other 7.9 7.2 8.8 7.3 7.5 Not known 4.2 5.0 4.4 4.7 4.6

Total 100.0 100.0 100.0 100.0 100.0 Source: 2004 CSES (15-month sample). Reported in Knowles, 2005. Types of Disabilities The CSES data indicates that 22% of people with disabilities report more than one type of disability. Vision-related problems are the most commonly reported type of disability, and mobility-related disabilities are the next frequently identified problem. Females are more likely to report vision-related and mental disabilities, and males are more likely to report mobility-related disabilities. Table C. Distribution of reported types of disability by sex and urban-rural residence, 2004 Type of disability Male Female Urban Rural Total

Vision 27.1 31.5 31.8 29.2 29.5 Hearing 14.7 15.5 15.1 15.1 15.1 Speaking 4.4 4.9 4.6 4.7 4.7 Mobility 26.1 21.3 18.8 24.1 23.5 Feeling (tactile) 11.3 10.2 12.6 10.4 10.7 Mental 6.3 10.7 8.1 8.8 8.7 Learning difficulties 1.4 0.9 1.2 1.2 1.2 Fits/epilepsy 1.5 1.3 1.1 1.4 1.4 Other 7.2 3.7 6.6 5.1 5.3

Total 100.0 100.0 100.0 100.0 100.0 Source: 2004 CSES (15-month sample) Reported in Knowles (2005). Children with Disabilities As we have seen, children make up a large proportion of the disabled population in Cambodia. This is concerning, because disability early in life can have a negative impact on quality of life and productivity for many years to come. Children with disabilities are much less likely to attend school because their disabilities required special services (e.g. accommodations for vision and hearing impairments) that are not typically available in Cambodian schools22. Stigma and discrimination also appear to play a role in keeping children out of school23 24. This is obviously problematic in that education is crucial to improving later employment and earning prospects. 22 Knowles, JC (2005). Health, Vulnerability and Poverty in Cambodia: Analysis of the 2005 Cambodia Socio-Economic Survey 23 Thomas, P (2005). Poverty Reduction and Development in Cambodia : Enabling Disabled People to Play a Role. Disability Knowledge and Research Programme, funded by DFID. 24 Analyzing Development Issues Team (2006). The Challenge of Living with Disability in Rural Cambodia: A Study of Mobility Impaired People in the Social Setting of Prey Veng District, Prey Veng Province. Funded by CCC and VI.

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The CSES collected data about the causes of disability, but the information was not analyzed by age group (refer to Table B). However, several of the leading identified causes of disability include “disease” (reported as the cause by 26% of respondents), “congenital conditions” (9%) and “fever” (6%), and it is plausible that these causes may account for much of childhood disability. Concerns about childhood disease and congenital conditions that could lead to disability are corroborated by a recent Cambodian Demographic and Health Survey (CDHS) report25. This extensive nationwide study indicates that many pregnant women did not receive antenatal care from health professionals and that the number of babies delivered by health professionals or in health facilities was very low, particularly in rural areas. Obviously the risks for birth complications and disability increase when women do not have access to health professionals and facilities before and during delivery. The CDHS report26 suggests that serious childhood illnesses including acute respiratory illness (cough with short rapid breathing or difficulty breathing), fever, and diarrhea are common, but often go untreated in health facilities or by trained health providers. The percentage of children who received some type of oral rehydration treatment for diarrhea varied across the country. In Siem Reap it was 33.6% and in Takeo it was 53.3%. This data indicates that many children are not being taken for treatment when they have childhood illnesses that put them at risk for developing disabilities. In addition, vaccination rates for children are still low, particularly for poor children and in provinces outside Phnom Penh. Finally, analyses of height and weight measurements indicate that 37% of children are stunted, 7% are wasted, and 36% are underweight27. These conditions all suggest acute and/or chronic illness or inadequate food supplies, and are implicated in the development of disability. Similarly, the 2005 CSES28 found that children under 5 continue to demonstrate protein-energy malnutrition at very high rates probably because of incorrect infant-feeding practices coupled with infections, high risk of diarrhea and (especially in rural provinces) inadequate food supply. GAP IDENTIFIED Focus on Children A Cambodian picture emerges suggesting that a number of factors put children at risk for development of disability. In fact, Cambodia still has a high infant and early childhood mortality rate compared to the rest of the region (1 in 12 children die before reaching their 5th birthday)29. Many international organizations are engaged in implementation of primary prevention efforts (e.g. improving vaccination rates or access to nutritious food), but there is a gap concerning secondary prevention. The governmental expenditure on public health is only 2% of the gross domestic product30. Early screening, detection and referral of children at risk for disability could potentially have a great impact in minimizing the negative impact

25 National Institute of Public Health and National Institute of Statistics [Cambodia] and ORC Macro (2006). Cambodia Demographic and Health Survey 2005. Phnom Penh, Cambodia and Calverton, Maryland, USA. 26 ibid 27 ibid 28 Knowles, JC (2005). Health, Vulnerability and Poverty in Cambodia: Analysis of the 2005 Cambodia Socio-Economic Survey 29 National Institute of Public Health, National Institute of Statistics [Cambodia], and ORC Macro (2006). Cambodia Demographic and Health Survey 2005. Phnom Penh, Cambodia and Calverton, Maryland, USA. 30 World Bank (2006) HNP at a Glance: Cambodia (accessed on World Bank website on 1/07).

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of serious disease, congenital conditions or trauma, but these services are not currently available to Cambodians. Based on this contextual information, we made the decision made to focus our secondary prevention attention on infants and children. Focus on Specific Provinces The provinces of Siem Reap and Takeo were chosen because Handicap International is already very active in those provinces, so extending services from tertiary prevention (rehabilitation) to include secondary prevention would be a logical expansion of current activities and could capitalize on existing resources and relationships. Needed Information However, in order to develop targeted, appropriate and effective secondary prevention strategies, we needed some additional information. Although it is clear that problems during pregnancy, delivery or early childhood can lead to disability, we did not actually have health history information for identified children with disabilities that would prove the hypothetical link and provide specific guidance for secondary prevention development. We needed to know the following:

• What was actually meant when people report that there was a child in their household with a disability? The CSES provided a gross picture of disability prevalence and “types” of disabilities reported, but this information did not really provide clear information about the actual functional status and participation of children with disabilities. (This information would help us to better understand the population we wished to serve)

• How did children proceed from a congenital condition, illness or injury to having a

permanent disability? How had the family reacted, how had they used the health system, and how effective had those interventions actually been? In addition, what was the impact of having a child with a disability on the family? (This information would help us understand how the health system was actually being used when there is a child in a household with a serious health condition as well as perceptions about the strengths and weaknesses of the existing system)

• What kind of antenatal and postnatal care had the mother had? What were the

circumstances in the household that may have had an impact on development of childhood disability? (This information would give us a better picture of the interplay of risk factors early in the life of identified children with disabilities)

• In general, how do people in two rural provinces perceive health issues in their

community? How do they get health information? How do they view the health system strengths and weaknesses? Where would they go for help? What are the barriers to obtaining needed services? (This information would help us identify the most effective strategies for assuring secondary prevention)

• And finally, how do people in the rural provinces view people with disabilities? (This

information would help us to gain some insight into decision-making made in households where there was a child with a disability)

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These questions became the basis for a survey in Siem Reap and Takeo that would help us to develop needed secondary prevention activities in a more targeted manner. Fieldwork to collect data occurred from October through December 2006. STUDY METHODOLOGY Questionnaire Development Existing disability instruments that were scrutinized for possible use for the study included: World Health Organization Disability Assessment Schedule or WHODAS II31, Ten Question Questionnaire32, Washington Group Question Set33, and the WHO/UNESCAP Disability Questionnaire Version A34. None of these tools was sufficient to obtain the data that we needed, although some questions from these instruments were used in our final survey tool. Two questionnaires were developed for the study to answer the questions raised in the previous section. The first, entitled: “Disability in Cambodian Provinces of Siem Reap and Takeo” (refer to annex 3 for questionnaire) was developed by the HIB Project Manager over a period of three months with input from multiple individuals and organizations. The intended respondent was typically an adult who was the parent or significant caregiver of the child with the disability. Interviewers encouraged the children with disabilities to also be present during the interview if possible. If the child with the disability was old enough to respond to some questions (10 years or older) and cognitively intact, then the surveyor had the option of interviewing the child as the main respondent. The questionnaire included a demographic section that asked about members of the household (number and relationships, economic status, educational status etc.) The next section asked for a description of the impairments and activity limitations of the child with a disability. This section was critical for a good understanding of how the child was actually functioning as opposed to just labeling a child as “disabled”. The next section asked about the history of the disability- events that led from initial episode(s) of sickness, injury or congenital condition to permanent disability, and how the family used the health system during that period. The next section asked questions about the mother’s pregnancy and delivery of the child with the disability as well as questions pertaining to the child’s infancy, and the environment in which the child was living. These questions were included to better determine the extent to which events during pregnancy and early childhood influenced the development of disabling conditions. The shorter questionnaire entitled “Cambodian Health Perceptions Survey” (refer to annex 4 for questionnaire) was used with respondents who had children with disabilities, and also respondents who did not have children with disabilities. It included a demographic section, followed by questions that probed respondents’ views about why people get sick or injured, how they obtain health information, how they view the health system, what types of health services and providers they would use (or not), and how they perceive people with disabilities. 31 World Health Organization (2000). World Health Organization Disability Assessment Schedule (WHODAS II). February 2000 32 Stein, Z, Belmont L., & Durkin, M (1987).Mild mental retardation and severe mental retardation compared: experiences in eight less developed countries. Upsala Journal of Medical Science 44 (Suppl) 89-96. 33 Madans J. (2006). The definition and measurement of disability: The work of the Washington Group (powerpoint presentation, November 2006) 34 WHO/UNESCAP Project on Health and Disability Statistics: Disability Question Set Testing (workshop in Bangkok, June, 2006).

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Questionnaire development, translation, pilot testing, and revisions occurred during August – September, 2006. We also did some field interviews with health service providers in Siem Reap and Takeo including Health Centre staff members, PRC staff members, Hospital administrators, traditional healers, TBAs, NGO representatives, and Village Health Support Group volunteers to gain their perspectives as well. Finally, input was solicited from a range of key informants including groups representing people with disabilities (e.g. CDPO, ABC, NCDP, CABDICO), organizations involved in the health sector (e.g. World Bank, Save the Children Australia and CARE), and organizations involved with disability-related work (e.g. Cambodia Trust, Maryknoll, Krousar Thmey, CCMH etc.). Informed Consent We also developed an informed consent form for all respondents (refer to annex 5 for the English translation of the form). The interviewer was instructed to read the informed consent form aloud, and then respond to any questions that potential study participants had about the study. Respondents then had the option to sign the informed consent form (using a thumbprint if necessary) or not. Interviews were only conducted after informed consent had been obtained in this manner. Study Participants: Households Where there was a Child with a Disability We wished to administer the “Disability in Cambodian Provinces of Siem Reap and Takeo” to a sample that reflected the population of rural households where there were children with disabilities. Thus, we used a purposeful approach to sampling, targeting households where there was known to be a child with a disability. We used the database from CABDICO to select participants in Siem Reap because it covered multiple districts in the province and provided a wide range of subjects in terms of age and type of disability. CABDICO has existed (initially as a program of Handicap International Belgium) since 1999, and has interviewed and worked with many people in the community who have a disability. CABDICO’s database categorized disabilities in the following way: vision problems (one or both eyes blind, or low vision); mobility problems (clubfoot, polio, amputee, hemiplegia and other more rare conditions); hearing/speech problems (deaf, deaf mute, cleft palate); mental retardation, (this category also included Down’s syndrome, epilepsy); and cerebral palsy. To choose the sample, first we selected all children in the CABDICO database born between 1988 and 2006, and then sorted the database by child’s birth year into three groups (0-6 years, 7-14 years, and 15-18 years). These age groups corresponded grossly to preschool age children, school-aged children, and those who might be in the workforce or less commonly in secondary school. Because we were particularly interested in learning about events leading to disability (e.g. related to early childhood illness or a difficult delivery) we chose fewer households with children in their later teen years. This choice was based on the rationale that it would be difficult for families to remember events that occurred many years ago. As the 2004 CSES35 reported that the main “types” of disability in Cambodia included problems in the areas of vision, hearing, mobility, feeling (tactile), and mental function, we wanted to be sure to include children with those types of conditions. These categories lacked clear definitions, and the CSES results were based on self-perceptions, but we knew that we were interested in a wide variety of “types” of disabilities.

35 Ministry of Planning, National Institute of Statistics (2004). The 2004 Cambodia Socio-Economic Survey Report. Phnom Penh, Cambodia.

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Next, we sorted the names according to age and type of impairment/disability so that we had 15 subgroups (see table D). Then we randomly chose names from each age-disability type subgroup until we had the totals identified below. Unfortunately, the CABDICO database had fewer children proportionally who were 0-4 years old, so we were not always able to choose as many very young children as we would have liked (and thus the resulting numbers in each category differed somewhat from the ideal described in Table D). To identify a sample in Takeo, we obtained household names from several different organizations including the HIB Physical Rehabilitation Center in Takeo, Rehabilitation of the Blind in Cambodia (RBC), Krousar Thmey (works with deaf children) and the Children’s Centre for Mental Health (CCMH). These datasets did not give us the number of children needed who had visual impairments, hearing impairments or mental impairments, so in some cases we asked Village Leaders to help identify households where there was a child with the type of impairment we were looking for. Table D: Planned Stratified Sample of Children with Disabilities per Province Type of impairment 0-6 years old 7-14 years 15-18 years TOTALS Visual impairment 20 20 10 50 Hearing impairment 20 20 10 50 Moving impairment 20 20 20 60 Mental impairment 20 20 -- 40 Multiple impairment 20 20 10 50 TOTALS per province 100 100 50 250 In the field, if the interviewer was unable to find a respondent (e.g. the family had moved or the child had died), then s/he was instructed to ask the Village Chief or village members for the name of another household where there was a child with a disability. We made this choice to minimize extensive unscheduled travel time. It often took hours to get to a village and find a household. To start over and go to another village would have been expensive and it would have been impossible to finish the interviews in a timely manner. This meant that in the end the numbers of children with specific types of impairments was not identical to the sample frame in the above chart. Study Participant Households without Children with Disabilities In addition to the households described above we also administered the “Cambodian Health Perceptions Survey” to neighboring rural families where there was not a child with a disability. After completing the interview (both questionnaires) in a household where there was a child with a disability, interviewers were instructed to leave the house, turn left, and then go to the next house they encountered where someone was home and there was not a child with a disability. There, they were instructed to request permission to administer the Cambodian Health Perceptions Survey. This gave us a simple, somewhat crude way of matching general households to households where there was a child with a disability. We chose a total sample of 1000 households: 500 in Siem Reap (250 with a child with a disability and 250 without); and 500 in Takeo (250 with a child with a disability and 250 without). This sample size allowed us to have a least 20 subjects in each of the stratified subgroups that we were most interested in (see table D). Time and financial restraints also played a role in sample size determination.

Secondary Prevention of Disabilities in Cambodia Final Study Report 2007

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Study Procedures Interviewer Training Six interviewers were hired to complete all of the interviews. They received two and a half days of training from the HIB Project Manager, Project Officer, Data Officer and Field Supervisor. A training manual for field surveying was developed and used to assist the training process and as a reference for interviewers throughout the survey period. All materials were initially written in English and then translated into Khmer by the HIB translator. Most of the interviewer training was conducted in Khmer, although the Project Manager’s involvement required a certain amount of translation between Khmer and English. The interviewers practiced administering the questionnaires, first to each other, and then to volunteer PRC clients with supervision and feedback until all of the interviewers could administer the survey correctly on their own. In the field, interviewers were again supervised until we were assured of their consistency and competence. Field Procedures On a daily basis, each interviewer was expected to complete two interviews in households where there was a child with a disability (the longer interview) as well as two shorter interviews in neighboring households where there was not a child with a disability. This was not always possible in the most remote operational districts of the provinces where there were great distances between houses, and the roads were quite rudimentary. In addition, as we surveyed during the rainy season, it was sometimes very difficult to travel on motorbikes in areas that were flooded. Interviewers sometimes were able to get around in boats under those circumstances. Finally, it was sometimes difficult to find participants at home during the harvest season when they were out in the rice fields. At those times, the interviewers were instructed to arrange a more suitable time when they could come back to complete the interview. In each household, the interviewer explained the purpose of the survey, and then read the one-page informed consent form out loud. If the participant was willing to sign the consent form, then the interviewer could go on to administer the questionnaire. Field Supervision A field supervisor was hired to supervise the interviewers on a daily basis in the field. She was responsible for quality control, and checked the completed questionnaires at the end of the day to make sure that they were completed thoroughly and clearly. The Field Supervisor observed interviewers on a regular basis to assure that interviews were handled professionally and according to protocol. She also handled issues related to finding households, contacting local authorities, organizing transport, finding rural accommodation as needed, assuring team security or any other practical difficulties that arose on a day to day basis. Data Analysis We used the database “Access” to enter field data. Later, the SPSS statistical package was used for data analysis. Two data enterers were hired and trained to enter all of the data under the supervision of the data officer. The data officer was responsible for checking and cleaning the data, and he was assisted in this task by the Project Officer. The project manager provided input concerning all unusual or unique coding and data entry questions and oversaw all data analysis. Data was analyzed descriptively for this study report.

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Num

ber

of H

ouse

hold

s

Number of Family Members

STUDY RESULTS Initially the data from the two provinces were analyzed separately to determine whether there were differences between them. We found only minor differences on a few questions, so the decision was made to aggregate the data and analyze it as one dataset. Thus, the following description about households where there is a child with a disability (refer to questionnaire in annex 3) reports findings from 500 households in Siem Reap and Takeo provinces. We also analyzed the data from the two subgroups (500 households where there was a child with a disability and 500 households where there was not) and found that they were very similar. Thus we aggregated the data from all 1000 households and will report some results for the entire study sample (refer to questionnaire in annex 4). We will point out the few instances where there were differences between the two provinces or groups. Demographics of Survey Respondents Family Financial Status (all 1000 households) Almost half of the respondents (48%) were very poor, and reported making less than 4000 riels per day (the equivalent of 1 US dollar). Another 34% made the equivalent of 1-2 US dollars per day, and only 18% made more than that. Land Ownership of Family (all 1000 households) Ninety-four percent (94%) of families in the study reported owning their own home and land. Four percent (4%) reported no ownership, 2% owned just the home, and 1% owned just their land. However, we did not ask whether families actually had titles or other documentation of their land and home ownership. Family Members at Home (all 1000 households) The majority of survey families had 4-7 family members living at home with an average of 6.7. The number of family members living together ranged from 2-15. Figure 1: Number of Family Members Living at Home

Secondary Prevention of Disabilities in Cambodia Final Study Report 2007

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Relationship of Survey Respondent to Child with Disability (500 households) The great majority of the survey respondents were mothers of the children with a disability. Table 1: Relationship of Respondent to Target Child

Frequency Percentage Mother 356 71% Father 67 13% Grandmother 39 8% Brother 3 1% Sister 11 2% Grandfather 10 2% Other 14 3% Total 500 100%

Age and Gender of Children (500 households) As previously described, we originally intended to have a greater proportion of young children in the survey, but the database was skewed toward older children which made sampling young children problematic. Pragmatic field decisions (when we were unable to find a subject) also affected the final age distribution. Table 2: Age and gender of children

Age Frequency Percentage ≤1 years 20 4% 2 -3 years 26 5% 4 – 6 years 92 19% 7 to 14 years 231 46% 15 to 18 years 131 26% Gender Male 273 55% Female 227 45% TOTAL 500 100%

Parental occupation and education (500 households) The vast majority of parents (71% of fathers and 74% of mothers) identified themselves as farmers. In Takeo, the percentage of parents who farmed was about 10% less than the percentage in Siem Reap. Because our survey was carried out during the harvest time of the year, the interviewers sometimes conducted the interviews out in the field or arranged to meet with respondents when they were not in the rice fields. Other respondents stated that they were self employed, or labored for others, but their numbers were small. Ten percent of the fathers (48) and 5% of the mothers (18) were reported to be dead. The respondents in the two provinces differed somewhat in years of education. In Siem Reap, the majority of parents of children with disabilities reported never having gone to school. In Takeo, there was much more variation with a range of 0-12 years of education.

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Table 3: Years of Parental Education Years of Education

Fathers (Takeo)

Mothers (Takeo)

Fathers (Siem Reap)

Mothers (Siem Reap)

TOTALS

0 84 (34%) 78 (31%) 150 (60%) 160 (64%) 472 (47%) 1 6 (2%) 8 (3%) 5 (2%) 16 (6%) 35 (3%) 2 7 (3%) 16 (6%) 20 (8%) 17 (7%) 60 (6%) 3 16 (6%) 31 (13%) 22 (9%) 20 (8%) 89 (9%) 4 21 (8%) 32 (13%) 16 (6%) 14 (6%) 83 (8%) 5 15 (6%) 26 (10%) 5 (2%) 9 (4%) 55 (5%) 6 18 (7%) 17 (7%) 8 (3%) 4 (2%) 47 (5%) 7 35 (14%) 22 (9%) 9 (4%) 3 (1%) 69 (7%) 8 17 (7%) 7 (3%) 9 (4%) 3 (1%) 36 (4%) 9 19 (8%) 9 (4%) 4 (2%) 4 (2%) 36 (4%) 10-12 12 (5%) 4 (1%) 2 (1%) 0 (0%) 18 (2%) TOTAL 250 250 250 250 1000 Impairments and Functional Difficulties Respondents were asked about problems experienced by their children pertaining to seeing; hearing; communicating and interacting; learning, concentrating and remembering; holding and using objects; moving; emotional conditions (e.g. anxiety or depression); pain; breathing difficulties; and convulsions or blackouts. Some of these questions emphasized difficulty associated with physical or mental impairments, and some pertained more specifically to activity difficulties. All had been identified in previous literature as important to function in daily life36 37. The results are described below in Tables 4 – 10. Table 4: Respondent report concerning child visual performance

Difficulty seeing Number Percentage Not difficult 375 75% Somewhat difficult 49 10% Difficult 76 15% Total 500 100%

The 125 respondents who reported that their child had “some difficulty” or “difficulty” seeing were then asked about the use of eyeglasses. Eight (8) or 2% of the group did wear glasses. The other 117 did not. Of this group who did not wear glasses, 29 respondents felt that the condition was not serious enough to warrant their use. A few stated that the condition was too serious to be amenable to glasses. Others identified barriers related to accessing and affording glasses or other equipment. Table 5: Respondent report concerning child auditory performance Difficulty Hearing Frequency Percentage Not difficult 377 75% Somewhat difficult 41 8% Difficult 82 17% Total 500 100% Responses to this question were similar to the ones related to seeing. Of the 123 children who had some difficulty or difficulty hearing, 5 wore hearing aids. Nineteen respondents felt that the condition was not serious enough for hearing aids, and the others did not know how to access or pay for them, felt that the condition was too serious for adaptive aids, or stated that the child was too young to wear them.

36 UN Dept of Economic and Social Affairs (2001). Guidelines and Principles for the Development of Disability Statistics. 37 WHO/UNESCAP Project on Health and Disability Statistics (2005). Disability Statistics – Training Manual (draft).

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Tables 6 and 7 describe difficulty in a variety of tasks associated with interpersonal relationships, communication and cognition. About 30-50% of children had at least some difficulty in one or more of these important areas. Table 6: Respondent report of child communication/relationship performance Does you child have difficulty with the following task?

No Sometimes Yes N/A* Total 100%

Speaking ( child over 2 years) 295 (59%) 45 (9%) 142 (28%) 18 (4%) 500 Understanding when others are speaking 317 (63%) 86 (17%) 77 (15%) 20 (4%) 500 Playing with or talking to others 258 (52%) 104 (21%) 121 (24%) 17 (3%) 500 *N/A applies to children that respondents felt were too young to demonstrate these skills. Table 7: Respondent report of child cognitive (mental) performance on tasks Does your child have difficulty with the following task? No Sometimes Yes

N/A*

Total 100%

Learning at school or home 230 (46%) 121 (24%) 129 (26%) 20 (4%) 500 Remembering things 295 (59%) 109 (22%) 77 (15%) 19 (4%) 500 Concentrating on tasks 263 (53%) 78 (16%) 147 (29%) 12 (2%) 500 *N/A applies to children who respondents felt were too young to demonstrate these skills. Table 8 provides information concerning basic sensory and sensory-motor tasks. More than a quarter of the children were reported to have at least some difficulty in these areas. Table 8: Respondent report of child sensory performance on tasks

Does your child have difficulty with the following task? No Sometimes Yes

N/A*

Total100%

Gripping, holding or using tools or other things 352 (71%) 72 (14%) 70 (14%) 6 (1%) 500 Feeling things with his/her hands or feet 348 (70%) 70 (14%) 72 (14%) 10 (2%) 500

*N/A applies to children who respondents felt were too young to demonstrate these skills. Table 9 describes performance associated with movement and mobility. Approximately a third of all children had some difficulty in this domain. Table 9: Respondent report of child movement-related performance on tasks

Does your child have difficulty with the following task? No Sometimes Yes N/A*

Total 100%

Moving around in the house 329 (70%) 66 (13%) 94 (19%) 11(2%) 500 Moving outside the house 301 (60%) 68 (14%) 118 (24%) 13 (3%) 500 Walking on an even surface for 50 meters 319 (64%) 53 (11%) 115 (23%) 13 (3%)

500

Climbing steps 310 (62%) 63 (13%) 114 (23%) 13 (3%) 500 *N/A applies to children who respondents felt were too young to demonstrate these skills. A total of 208 children had some type of difficulty moving around. Parents of 52% of those children reported the use of some type of walking aid (wheelchair, prosthesis, orthotic device or crutch). That meant that 100 (or 48%) of the children with mobility concerns did not use any type of adaptive equipment or device. When asked why not, about half of them (49) reported that they didn’t feel that the condition was serious enough. The other half indicated that they did not know where to find equipment or they were concerned that they couldn’t pay for it. We also asked respondents about the impact of general factors such as emotional conditions, pain, breathing problems and convulsions (“fits”) on function, and learned that a relatively high percentage of children had difficulty with each of these areas of concern.

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Table 10: Respondent report of other factors associated with task performance Does your child have difficulty with tasks because of this factor? No Sometimes Yes

N/A Total

Emotional condition* 219 (44%) 143 (28%) 124 (25%) 14 (3%) 500 Pain 277 (58%) 130 (27%) 88 (15%) 5 (0%) 500 Breathing difficulty 344 (79%) 97 (19%) 59 (12%) 0 500 Convulsions or blackouts 342 (69%) ** 158 (32%) 0 500 *includes anxiety, sadness, worry, depression, and strange thoughts or ideas ** In this question we asked simply whether the child ever had “convulsions or blackouts – yes or no” Child Attendance at School Ninety-eight (98) of the children were less than 6 years old, and so would not be expected to attend school. This left 402 children who were school-aged. Of this group, 223 of them (55%) actually attended school. The other 179 (45%) did not attend school at all. Figure 2: Grade Attendance and Age of Child

It is apparent from Graph 2 that many of the children who did attend school stopped after the early grades, even the older children. We also asked (for those who did attend school) about their regularity of attendance, and most (78%) reported regular attendance. Seventeen (17) respondents reported that their children attended special education classes for the deaf or blind provided by Krousar Thmey. Reasons given for not attending school included: problems with transportation, teachers not knowing how to teach children with disabilities, difficulties with accessibility, lack of special equipment, expenses associated with school, sickness, pain, a need for the child to help with work around the house, and discrimination. History of Disability Causes of Health Difficulty Respondents gave a variety of reasons when asked what they thought caused their child’s health condition that led to a disability. Table 11 gives specific frequencies and percentages.

0

5

10

15

20

25

30

35

G 1 G 2 G 3 G 4 G 5 G 6 G 7 G 8 G 9 G 10

Num

ber o

f chi

ldre

n

6-89-1112-1415-18

Age

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Table 11: Reported Cause of Disability Stated Cause Frequency* Percentage of 500 Sickness or disease 228 46% Congenital 199 40% Accident at play/work 76 15% Bad karma (past life) 49 10% Bad luck 40 8% Injections 23 5% Malnutrition 17 3% Difficult birth 11 2% No vaccinations 5 1% Violence 4 1% Chemical or drug 4 1% Traffic accident 3 1% Other** 30 6% *Respondents could give more than one reason, so total is greater than 500 ** Other” reasons identified included maternal health problems, genetic reasons, a fall suffered when the child was leaving the house, a mine accident, a burn, or a belief that the problem was caused by a dead ancestor. The majority of respondents reported that their child’s health problem began at birth or within the first year of life. Table 12: Length of time until beginning of child’s health problem Length of time until beginning of problem Frequency Percentage of 500

Less than one month 216 43% One to six months 79 16% > 6 months to 12 months 55 11% > 12 months to 24 months 37 7% > 24 months 113 23% TOTAL 500 100% For the 228 respondents who reported that their child had become disabled because of illness or disease, we then asked for a name of a disease or some type of description of it. More than half of them described fever (“hot disease”) or often fever accompanied by convulsions. Others described a variety of conditions including unconsciousness, ear infections, vomiting and diarrhea, measles, meningitis, dengue fever, difficulty breathing, asthma, pneumonia, tuberculosis, various kinds of infections and skin conditions including blisters and boils. When asked who provided a diagnosis, 42% reported that they named the disease themselves and 34% referred to family members or friends. Doctors made the diagnosis 12% of the time, and other providers including traditional healers, and nurses rarely identified the condition. We were also interested to explore correlations between the cause of the child’s health condition and the types of functional impairments reported. Table 13 gives specifics concerning those associations. No obvious patterns emerge – different causes of health conditions appear to be diffusely distributed in terms of the kinds of impairments and activity limitations that are resultant.

Secondary Prevention of Disabilities in Cambodia Final Study Report 2007 26

Table 13: History of Health Condition and Difficulty with Activities Se

eing

Hea

ring

Spea

king

Und

erst

andi

ng w

hen

ot

hers

are

spea

king

Play

ing

or

talk

ing

to o

ther

s

Lea

rnin

g at

scho

ol,

hom

e or

wor

k pl

ace

Rem

embe

ring

th

ings

Gri

ppin

g, h

oldi

ng o

r

usin

g to

ols o

r ot

her

thin

gs

Feel

ing

thin

gs w

ith

his/

her

hand

s or

feet

Mov

ing

arou

nd

in th

e ho

use

Mov

ing

outs

ide

th

e ho

use

Wal

king

on

an e

ven

su

rfac

e fo

r 50

met

ers

Clim

bing

st

eps

Em

otio

nal

prob

lem

Con

cent

ratin

g

pain

that

mak

es d

aily

ac

tiviti

es d

iffic

ult

Bre

athi

ng p

robl

ems

Fits

, bla

ckou

ts o

r lo

ss

cons

ciou

snes

s TOTAL

Difficult birth 2 1 4 4 5 8 4 7 6 5 7 5 8 9 8 6 4 4 97 Sickness or disease 41 61 90 87 100 127 105 73 73 87 99 88 96 130 149 104 87 107 1704 Accident traffic 1 1 0 0 0 0 0 0 0 1 2 1 2 1 2 1 1 0 13 Accident play/ work 27 41 11 16 18 30 23 15 17 24 25 24 29 35 50 47 22 19 473 Accident mine/ UXO 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 0 0 0 2 Chemical substance or drugs 0 2 2 2 2 2 2 2 2 1 1 1 1 2 2 2 0 1 27 Rape/violent attack/domestic violence 0 3 2 2 3 3 3 0 0 0 1 0 0 2 3 2 0 1 25 Malnutrition 3 3 7 7 6 11 6 6 7 10 10 9 9 10 11 7 5 3 130 Burn (acid or fire) 0 0 0 0 0 0 0 0 0 0 0 0 0 1 1 1 0 0 3 Bad luck 7 15 20 18 22 16 16 12 11 12 14 13 12 15 25 16 16 12 272 Bad karma (from past life) 10 24 31 25 32 24 23 11 15 10 12 11 11 26 32 17 22 13 349 Injections 2 3 4 3 9 13 5 6 10 12 15 15 16 13 19 12 3 10 170 Didn’t have vaccinations 0 1 1 1 2 3 2 4 4 4 4 4 4 4 4 3 1 2 48 Congenital 61 53 88 67 102 100 63 50 50 47 62 55 55 107 151 74 57 38 1280 Other 3 4 10 9 16 17 13 17 11 13 13 13 13 14 13 14 13 12 218

Total 157 212 270 241 317 355 265 203 206 226 265 239 256 369 471 306 231 222 4811

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Health services used since time that health problem was observed Respondents were asked to identify all of the services their child used after the onset of the congenital condition, injury or sickness and how helpful they found the services. These are listed in Table 14. Respondents could list all services that they used, so the numbers are higher than the number of respondents. Overall, respondents reported that services they used were helpful 27% of the time, somewhat helpful 36% of the time and not helpful 37% of the time. Table 14: Facilities/services used by respondents and rating of helpfulness Facility or Service used Frequency of use

(% of 500) not helpful somewhat helpful helpful

Traditional healer 156 (31%) 79 52 26 Rehabilitation Centre 111 (22%) 25 34 53 Kantha Bopha Hospital^ 101 (20%) 23 37 38 Health Centre 90 (18%) 39 39 13 Provincial Hospital 81 (16%) 38 18 25 Pharmacy 73 (15%) 19 41 14 Angkor Children’s Hospital^ 54 (11%) 12 13 27 No treatment 48 (10%) 41 2 0 Self treatment 48 (10%) 21 22 4 Referral (district) Hospital 47 (9%) 22 16 8 Private Hospital+ 46 (9%) 15 21 10 Private Clinic 45 (9%) 16 21 10 Village Health Volunteer 39 (8%) 14 18 4 National Hospital 15 (3%) 5 4 6 Other * 116 (23%) 42 52 52 *Other responses included Ochambak Hospital (listed 28 times for eye care), Caritas Organization (listed 17 times for eye care), Chey Chunmas Hospital (listed 16 times for mental health care), other unidentified hospitals associated with various organizations, Takmao Hospital, The Keankhlang PRC, the Battambang Hospital, Krousar Thmey for deaf services, a Thai hospital, a Japanese hospital, a Heart hospital, a Vietnamese hospital, and other hospitals in various provinces in Cambodia. +Some respondents reported using a private hospital, but did not specify which one they used ^These are both private, internationally funded pediatric hospitals in Siem Reap Respondents were also asked to identify which service/facility they used first, and how satisfied they were their choice (Table 15). There were a variety of views concerning satisfaction with each type of health facility or provider. Proportionally, those with the highest levels of satisfaction went to the private pediatric hospitals in Siem Reap or to specific rehabilitation centres.

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Table 15: Respondent satisfaction with initial treatment for child First service used Frequency

of first use% of 500

Not at all satisfied

Somewhat satisfied

Very satisfied

Traditional Healer 80 (16%) 30 33 15 Health Centre 44 (9%) 12 23 9 Kantha Bopha Hospital 40 (8%) 11 18 12 Rehabilitation Centre 38 (8%) 4 9 25 Private Hospital+ 35 (7%) 12 20 3 Provincial Hospital 31 (6%) 13 10 8 Angkor Children’s Hospital 28 (6%) 2 10 14 Private Clinic 26 (5%) 10 8 8 Pharmacy 25 (5%) 6 14 5 Referral Hospital 20 (4%) 5 13 2 Village Health Volunteer 19 (4%) 8 7 2 National Hospital 7 (1%) 3 1 3 Other* 65 (13%) 19 25 18 No treatment or self treatment 42 (8%) 40 2 0 TOTAL 500 135 191 124 * Other includes CABDICO, Krousar Thmey, Heart Hospital, Thailand provider, other organizations and hospitals. + refers to unspecified private hospital Table 16 gives associations between the first service chosen and the reported cause of the child’s disability. There are no clearly defined use patterns for different types of conditions. Instead, facility and provider use appear diffusely distributed for each type of health problem identified.

Table 16: Reported Cause of Disability and First Service Used D

iffic

ult b

irth

Sick

ness

or

dise

ase

Traf

fic A

ccid

ent

Play

/Wor

k A

ccid

ent

Min

e A

ccid

ent

Dru

g ab

use

subs

tanc

e or

rugs

V

iole

nce

Mal

nutri

tion

Bur

n

Bad

luck

Bad

kar

ma

Inje

ctio

ns

No

vacc

inat

ions

Con

geni

tal

Oth

er

Provincial hospital 12 11 1 1 10 3 National hospital 4 1 1 2 3 1 Private hospital 2 22 1 9 1 1 1 2 4 10 4 Referral hospital 1 10 6 2 4 1 Health centre 1 20 5 1 2 5 5 2 24 Private clinic 22 5 2 1 1 2 2 1 1 1 Pharmacy 1 15 3 1 3 4 8 1 Rehabilitation center 1 2 1 4 4 6 1 31 1 Traditional healer 2 51 16 1 1 2 2 1 1 13 4 Angkor children hospital 1 7 1 1 1 5 7 0 1 9 3 Kunthabopha hospital 1 17 2 1 7 5 1 20 5 Village health volunteer 15 3 1 1 2 6 12 2 Other 1 26 1 12 1 6 6 1 22 2 Total 11 223 3 75 1 4 2 14 1 34 41 23 3 167 28

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We were also interested in logistical and financial issues related to respondents’ first treatment choices. Not surprisingly, respondents reported using motorbikes most often to go to health facilities, and the next most common transportation methods included walking and taxis. In Siem Reap, walking and bicycling for care were more common than in Tako. On the other hand, taxi use was almost exclusively reported in Takeo. Table 17: Transportation to Health Facilities

Type of Transport Frequency** Percentage of 500 Motorbike 147 29% Walked 83 17% Taxi or tuk tuk 80 16% Bicycle 60 12% Bus 14 3% Boat 5 1% Ambulance 4 1% None: Treated by provider at home 45 9% No treatment or self treatment 57 11% Other* 5 1%

*other responses included oxcarts, horse carts, and cars that belonged to NGOs. ** total does not equal 500 because some respondents stayed at home for treatment and some used more than one type of transport In many cases there were no transportation costs because respondents walked, rode bicycles, got free rides from friends or organizations, or received treatment at home. In the end 236 respondents reported transportation expenses. Slightly more than half of those who did pay for transportation reported costs between 500 and 10,000 riels. Most of the others paid up to 50,000 riels and 7 respondents paid more than that. We were interested in knowing how long the child spent at the first health facility used, as this would also typically affect parental time as well. Figure 3 indicates that there was a wide variety of time spent: Figure 3: Time spent at first treatment facility

28

163

66

2235

186

020406080

100120140160180200

0h <=1h 2h to 5h 6h to 12h 13h to 24h >24hNumber of hours

num

ber o

f res

pond

ents

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Reported costs of the first treatment ranged from nothing to greater than 500,000 riels. More than a third of respondents (36%) spent between 10,000 and 50,000 riels. When there was a financial charge, families reported paying for the treatment themselves 70% of the time. Figure 4: Cost of initial treatment for child

79

180

54 59

16

112

020406080

100120140160180200

500R to10000R

10000R to50000R

50000R to100000R

100000R to500000R

>500000R No cost*

Number of Riels

num

ber o

f res

pond

ents

*No payment was reported if the person self-treated, went to a private pediatric hospital, saw a traditional healer, went to the Physical Rehabilitation Centre or had a free check up at the Health Centre. In addition to direct treatment costs, there also “opportunity costs” associated with lost work time. Many parents reported losing an hour to a month, and a few lost as many as 3 months work time. Table 20 describes that particular cost dimension of the child’s condition to the parents.

50

118

200

96

25 110

50

100

150

200

250

No

time

lost

1h to

24h

(1da

y)

>1da

yto

10da

y

>10

day

to 3

0da

y

>30

day

to 9

0da

y

>90

day

Amount of time

num

ber

of re

spon

dent

s

When asked if there were services that families had not initially used, that they wished they have used, the answer was a resounding yes on the part of 337 (67%) of the respondents. As seen in Table 18, provincial hospitals topped the list, followed next by national hospitals and rehabilitation centres.

Figure 5: Lost parental work time in response to child injury or illness

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Table 18: Services which families wished they had used for their child Type of facility or service Frequency of response* Percentage of 337 Provincial hospital 81 24% National hospital 44 13% Rehabilitation Center 33 10% Private Hospital+ 24 7% Kantha Bopha Hospital 21 6% Traditional Healer 18 5% Angkor Children’s Hospital 17 5% Referral Hospital 11 3% Private Clinic 10 3% Health Centre 3 1% Other** 110 33% *Total =376 and reflects the fact that not all respondents wanted additional services, but some identified more than 1 that they wanted +Some respondents chose “private hospital” without specifying which one they were referring to ** Other responses included going to: specialty eye care hospitals or service providers, going for specialty mental health services, obtaining doctors or services from other countries, going to other hospitals in Cambodia. or seeing monks who also are healers Respondents reported a variety of reasons why they did not initially use the service(s) that they wished that had obtained. As can be seen in Table 19, more than two thirds of the responses concerned cost. Table 19: Reasons for not obtaining needed health services for child Reason given Frequency of response* Percentage of 337 Cost of service or medication 135 40% Cost of transportation 224 66.5% Could not afford to buy food 90 27% Distance to service 80 24% Didn’t know how to access service 121 36% Didn’t trust health providers 6 2% Other** 46 14% * Total reasons given = 702 and reflects the fact that respondents were allowed to give multiple responses ** Other reasons included not knowing what was available, thinking that the situation wasn’t serious, assuming that there was no treatment (e.g. for congenital conditions), or being too busy to take the child for care. Finally, families were asked to summarize why they thought that their child ended up developing a disability. Many of the answers had to do with finances or concern about the health system, but some also revolved around issues of bad luck and karma (related to past lives or ancestors). Table 20: Perceptions about why child developed a serious disability Reason given Frequency* Percentage of 500 Lack of knowledge about health system 185 37% Cost of treatment 176 35% Poor or inadequate treatment 170 34% Lack of money for medicine 163 33% Bad karma 106 21% Bad luck 74 15% Lack of money for transportation 25 5% Child just born that way 22 4% Bad advice from others 7 1% Other** 60 12% *Numbers equal more than 500 because respondents could give more than one answer. ** Other answers included malnutrition, lack of time to get care for child, or too far to services or didn’t seek treatment

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Additional Information In order to better understand the history of the development of the child’s disabling condition, we also asked questions concerning antenatal care for the mother, issues concerning pregnancy and delivery, postnatal care, early childhood issues, and the general environmental conditions of the home (water and sanitation). We were concerned that in some households, the child’s problem may have begun even before birth without the family necessarily understanding that was the case. The majority of women reported that they had no antenatal care. The range was 0-8 visits with a mean of 1.4 visits for both antenatal and postnatal care. Table 21: Number of antenatal visits and postnatal visits Number of visits Antenatal visits

Frequency and % Postnatal visits

Frequency and % 0 277 (56%) 278 (56%) 1 26 (5%) 73 (15%) 2 49 (10%) 52 (10%) 3 76 (15%) 75 (15%) 4 32 (6%) 3 (1%) 5 25 (5%) 7 (1%) 6 7 (1%) 3 (0%) 7 4 (1%) 5 (1%) 8 4 (1%) 0 (0%) Don’t know 0 (0%) 4 (1%) TOTAL 500 500 More women in Takeo reported antenatal care and postnatal care than women in Siem Reap, and there were some differences concerning who actually provided antenatal, delivery and postnatal care as seen in Table 22. Table 22: Antenatal, Delivery and Postnatal Care in Siem Reap and Takeo

Antenatal Care Delivery Postnatal Care Type of Provider

Siem Reap Takeo Total

Siem Reap Takeo Total

Siem Reap Takeo Total

Doctor 0 4 4 0 3 3 2 1 3 Nurse 18 26 44 2 16 18 5 17 22 Midwife 38 79 117 36 59 95 20 37 57 TBA 46 9 55 211 170 381 70 55 125 other 0 3 3 1 2 3 5 6 11 Total 102 121 223 250 250 500 102 116 218

Twenty two percent (22%) of all women reported that they thought their pregnancy was “difficult”. Almost all (90%) had their baby at home, and the vast majority of them were attended by a TBA during delivery. Only 4% of all women went to a hospital, another 4% used a health centre and 2% reported using private facilities for delivery.

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Only 7% of the women thought reported that they thought their baby was premature, but 76 (or 15%) estimated that their baby was only 1-2 kilograms when born. Almost all of the women stated that they breastfed their child (however we did not ask detailed questions about this topic). Only about 10% of the respondents were sure about which vaccinations their child had received, and the number of vaccinations reported ranged from 0-9, with 219 respondents reporting that they didn’t know how many had been given. Many of the women (307 or 62%) reported that their child had problems in infancy, including high fever (the most commonly cited problem by 135 women) convulsions, falls, dengue fever, and other assorted conditions including unspecified eye problems, pneumonia, asthma, difficulty breathing, diarrhea and vomiting, measles, unspecified weakness or abnormalities in the limbs, loss of consciousness, ear infection and various skin conditions such as boils and blisters. Finally, in response to basic environmental health questions, 62% of the respondents reported that their water came from an unprotected well or from a spring or river, and the vast majority (90%) did not have indoor plumbing or an outhouse. Almost all (96%) stated that they did sleep in beds protected from mosquitoes, although we did not probe to determine what exactly was meant by this response. General Health Perceptions of the Health System (1000 households) In order to learn about Cambodian views of the health system, we started by asking respondents’ perceptions of the main reason(s) why people in their community became sick or injured. Most people gave more than one response. Table 23: Respondent perceptions of why community members get sick or injured Reason given Frequency* Percentage of 1000 Poor sanitation 773 77% Poor nutrition 714 71% Poverty 646 65% Distance to health care 184 18% Chemicals in food 116 12% Cost of health care 98 10% Lack of immunizations 83 8% Changes in weather 66 7% Poor quality health care 57 6% Landmines and UXO 44 4% Bad luck 42 4% Mosquito bites 37 4% Congenital problems 30 3% Unsafe roads 31 3% Lack of pharmacies 24 2% Karma 15 2% Other** 61 6% *Total is greater than 1000 because respondents could give more than one answer **Other responses included: unsafe homes; dangerous work or play places; lack of clean water; lack of knowledge about health; and bird flu

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When asked where they get their information about health issues, the most common responses were television or radio, followed by village meetings. There was one noticeable difference between responses in the two provinces: in Takeo, posters were rated as a much more important form of information than they were in Siem Reap (195 of the 287 affirmative responses about the importance of posters came from Takeo). Table 24: Respondent sources of health information Information source Frequency* Percentage of 1000 Television 754 75% Radio 611 61% Village meetings 397 40% Posters 287 29% Village Chief 230 23% NGOs or other organizations** 224 22% Friends and neighbors 203 20% Health system providers+ 71 7% Billboards 65 7% School 17 2% Newspaper or magazine 11 1% *Total is greater than 1000 because respondents could give more than one answer ** Included RHAC, RACHA, RACHANA, PACT, SEDA, CEDAC, Koma, Red Cross and World Vision +Included VHSG, referral hospital staff, health centre staff Respondents were then asked to rate the quality of and access to a range of health facilities and providers. The responses are tabulated in Table 25. Many of the respondents knew nothing about the possibility of using health equity funds to pay for services or other related costs. Most respondents seemed fairly satisfied with both the quality and accessibility of health facilities and some providers. Table 25: Respondent perceptions of health service quality and access Characteristic rated Bad

(% of 1000) OK

(% of 1000) Good

(% of 1000) Don’t Know (% of 1000)

Total

Access to hospital 150 (15%) 333 (33%) 503 (50%) 14 (2%) 1000 Quality of hospital 40 (4%) 406 (41%) 540 (54%) 14 (2%) 1000 Access to health center 90 (9%) 487 (49%) 415 (42%) 8 (1%) 1000 Quality of health center 87 (9%) 659 (66%) 248 (25%) 6 (1%) 1000 Access to doctors 70 (7%) 214 (21%) 673 (67%) 43 (4%) 1000 Quality of doctors 39 (4%) 233 (23%) 685 (69%) 43 (4%) 1000 Access to private providers 89 (9%) 366 (37%) 519 (52%) 26 (3%) 1000 Quality of private providers 90 (9%) 606 (61%) 279 (28%) 25 (3%) 1000 Access to traditional healers 60 (6%) 432 (43%) 472 (47%) 36 (4%) 1000 Quality of traditional healers 250 (26%) 658 (66%) 57 (6%) 35 (4%) 1000 Cost of health care 362 (36%)

expensive 525 (53%) moderately expensive

109 (11%) inexpensive

4 (<1%) 1000

Access to health equity funds 31 (3%) 105 (11%) 329 (33%) 535 (54%) 1000 Access to pharmacies 135 (14%) 679 (68%) 175 (18%) 11 (1%) 1000 Quality of pharmacies 48 (5%) 477 (48%) 464 (47%) 11 (1%) 1000 When asked to identify where they would go if a family member was sick or injured, the majority indicated that they would go to the hospital, especially in the case of injury. Many also stated that they would consider going to a health centre for any kind of health

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condition. Of course the responses only indicate what people thought they would do hypothetically. It is clear from the previous dataset (in which respondents were asked what they actually had done) that the there were in fact barriers (either real or perceived) to obtaining hospital care. Table 36: Care preferences for seriously sick or injured family members Facility/service chosen Frequency if sick

( % of 1000) Frequency if injured

(% of 1000) Hospital 615 (62%) 815 (82%) Health Center 584 (58%) 495 (50%) Private Provider 309 (31%) 256 (26%) Traditional healer 75 (8%) 138 (14%) Talk to family or friend 74 (7%) 76 (8%) Self treat 147 (15%) 7 (1%) Other** 42 (4%) 11 (1%) *Answers total more than 1000 because respondents could give more than one response. **In “other” some respondents specifically specified one of the two pediatric hospitals in Siem Reap Traditional and Western Health Choices Respondents were asked to identify which types of health conditions were best treated by traditional healers, and which should be treated by western medicine. They were allowed to answer “both” if they felt that both types of providers were able to treat the condition effectively. Interestingly, broken bones were the only type of condition that respondents thought were better treated by traditional healers than western style providers: 77% of respondents thought that traditional healers did a good job of treating broken bones, and 51% believed that western medicine did a good job. For all other conditions, many more respondents chose western healthcare over traditional forms of healing. The only other conditions where quite a few respondents thought that traditional healers were particularly helpful involved cerebral palsy (33%), measles (36%) and chickenpox (36%). Perceived Barriers to Care When asked why they might not seek help for health conditions, 94% of respondents reported that they perceived significant barriers as listed in the following table: Table 27: Barriers to Seeking Health Care Services Identified Barrier Frequency of Response* Percentage of 1000 Cost of transportation 750 75% Cost of health care 479 48% Cost of medicine 476 48% Lack of money to buy food 401 40% Lack of transportation 278 28% Don’t know where to go 19 2% Other** 29 3% *The total is greater than 1000 as respondents could choose more than one. **Other barriers included not being able to miss work, and not liking or trusting the hospital or health centre Not surprisingly, 88% of respondents reported that missing work to school to manage a family members’ health problem would have very harmful financial repercussions. When asked whose role it was to take care of those who were sick or injured (respondents could give more than one answer), 80% identified family members. Twenty one percent

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(21%) thought it was the hospital’s role, and a few respondents suggested a role for neighbors, village leaders, NGOs or the government. Perceptions of People with Disabilities Finally, we asked a number of questions designed to assess respondents’ perceptions of people with disabilities. All 1000 respondents felt that people with disabilities deserved treatment to improve their quality of life. Similarly, 98% thought that children with disabilities should be allowed to go to school, and 97% felt that adults should be able and allowed to work. Somewhat fewer respondents, (88%) believed that people with disabilities should be allowed to get married, and 91% thought that it was appropriate for them to have children. Those who felt that people with disabilities should not get married or have children often pointed to practical concerns that it would be hard for them to work, make a living, and feed a family. Some suggested that it would be difficult for a person with a disability to attract a spouse, and that discrimination or poor treatment by others might make daily activities and tasks problematic or put the person at risk for harm. No one mentioned karma as a rationale for differential treatment. STUDY LIMITATIONS This study was only administered in 1000 households in two provinces in rural Cambodia. Half of those households had a child with a disability and half did not. Thus caution must be used in generalizing the results to the country at large. However, most of the results were quite similar for the two provinces (in different parts Cambodia), suggesting that responses to questions were not entirely dependent on specific location in the country. We used certain targeted databases to find households where there were children with disabilities. Thus, the sample may be biased in certain ways (e.g. almost all of the households had some type of contact with an NGO), and not reflective of the entire population of households where there is a child with a disability in Cambodia. DISCUSSION OF STUDY RESULTS This household study helps to confirm and clarify a number of factors that will be important in conceptualizing secondary prevention needs and potential activities. As far as we know, it is the first survey in Cambodia to provide a description of how an identified group of children with disabilities first became sick or injured (or started with a congenital condition), how the families used the health system to address their children’s needs, what the perceived barriers were, how they would imagine using the health system in the future, and how the children are functioning at present. The study assists us to identify important issues that must be addressed to prevent avoidable disability or complications of disability in the future.

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Demographic Considerations When introducing the survey, interviewers asked to speak to an adult who had significant contact and caregiver responsibilities with the child with a disability. In 71% of the cases, mothers responded. This reminds us that at least certain aspects of any prevention project must target the mothers of children with disabilities, as they are actively involved in their child’s care. In addition, many of the respondents in the households with a child with a disability had a very limited educational background; in fact 47% of the respondents had no education at all. The majority of the Cambodian population has had some primary school38. This information suggests that there may be a relationship between low education and having a child with a disability in the household. In addition most of the parents in the study were rice farmers, making a subsistence living growing food for their own consumption. This reminds us that any new initiatives designed to educate families about services or activities to prevent or minimize childhood disability would need to take into consideration the target population’s limited educational background, as well as the constraints of employment that (especially during certain times of the year) requires a tremendous amount of time and labor. Finally, study respondents were poor, with 48% reporting making less than 4000 riels a day (the equivalent of 1 US dollar). Nationwide data suggests that 34% of the Cambodian population live on less than $1 USD per day39, indicating that our study sample was over-representative of the very poor. It was clear from many respondent answers to survey questions that financial limitations were a key factor in health-related decision-making, which will need to be taken into careful consideration in prevention programming. This has been described repeatedly by others working in the health sector in Cambodia40 41. Impairment and functional status of children: inadequate use of existing resources There is a tendency in the literature to describe “people with disabilities” as though they are a homogeneous group with identical needs, and of course this is not true. We intentionally targeted a heterogeneous sample that was representative of the different “types” of disabilities found in Cambodia as described in the 2004 Cambodia Socio-Economic Survey42.

38 National Institute of Pulbic Health, National Institute of Statistics [Cambodia] and ORC Macro (2006). Cambodia Demographic and Health Survey 2005. Phnom Penh, Cambodia andCalverton, Maryland, USA: National Institute of Public Health, National Institute of Statistics and ORC Maryland. 39 The World Bank (2005). World Development Report 2006: Equity and Development. World Bank and Oxford University Press, NY: NY, p 279. 40 Meesen, B., Van Damme, W., Kirunga Tashobya, C., & Tibouti, A. (2006). Poverty and user fees for public health care in low-income countries: lessons from Uganda and Cambodia. The Lancet, 368, 2253-2257. 41 Van Damme, W., Van leemput, I., Ir, P., Hardeman, W., & Meesen B. (2004). Out of pocket health expenditure and debt in poor households: evidence from Cambodia. Tropical Medicine and International Health, 9, 1303-17. 42 Knowles, JC (2005). Health, vulnerability and poverty in Cambodia: Analysis of the 2004 Cambodia Socio-Economic Survey. Washington DC: The World Bank.

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Indeed, as is clear from tables 4-10, we found a very high number of children with reported difficulties in all aspects of function including seeing, hearing, communicating, developing and sustaining relationships, cognitive aspects performance, sensory dimensions of task performance, and movement-related performance of activity. In addition, a large proportion of children reportedly also had difficulty with emotional problems, pain, breathing difficulty, and convulsions or loss of consciousness. Some children had distinct problems in one of these areas such as vision or hearing, and others had difficulties in multiple areas. Some of these types of impairments and associated activity limitations are being addressed by NGOs and other international organizations. For example, Krousar Thmey has services for deaf children, and our study reflects the fact that at least some of the families know that and are using the available services. Similarly, it is clear from the survey results that many families already know about the PRCs in Takeo and Siem Reap, and have used their services. In other cases, families obviously learned about services eventually, and reported that they wished they had used available services earlier or at all (e.g specialty services for specific types of impairments such as visual problems). However, it is equally clear that some families still do not know about available services (for example, the finding that some children with a mobility disorder do not have an assistive device to aid movement). In other cases, families appear to know about potential services, but they worry about the cost and do not know that some services and facilities (e.g. the private pediatric hospitals in Siem Reap) are provided free of charge. Finally, delay seems to be an issue: for example many families who do use the PRC waited for many years before going there, and they would potentially have benefitted more it they went sooner43 All of these examples point to the importance of assertive outreach educational efforts. If there are services available, then we need to make sure that people know about them, are clear about how to access them, and understand which services are free of charge. It is a shame for important services to go begging because people lack awareness or knowledge about them. Impairment and functional status of children: Gaps in service and resources On the other hand, there are currently very limited early interventions available for children with complex problems and multiple impairments such as cerebral palsy or other developmental conditions. As already mentioned, the PRCs do treat children with cerebral palsy, but usually years after the condition has been identified. They are not prepared to treat infants with neuro-developmental conditions. There are some community-based outreach services available through CABDICO in Siem Reap province, but CABDICO’s ability to provide needed treatment is quite restricted due to the small size of the organization and limitations in staff knowledge and training. In addition, there are extremely limited treatment options available for children with pain, convulsions,

43 Data collected for External Evaluation of the Rehabilitation Sector in Cambodia, fall 2006 but not actually used in final report.

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cognitive, or mental health issues, and yet it is clear from the study results that the needs are great. Many respondents did not seek any type of services because their child had a congenital condition, and they assumed that there was nothing to be done about it. The awareness that the impact of congenital conditions can potentially be minimized by early intervention is lacking in both the general population and also among health care providers. When we asked several TBAs in the field how often they delivered babies with developmental concerns, their response was “never”, indicating that they are not trained to recognize signs of congenital disorders or perhaps they do not wish to do so for fear of being blamed. Finally, our study indicates that only 55% of school-aged children with disabilities are attending school at all (and often for only one or two years). In comparison, an 81% primary school completion rate is reported for Cambodia in the 2006 World Development Report44. A wide range of reasons were given for non-attendance related to: child health issues, lack of access, inability of the school to accommodate children’s needs, and concerns about how the child was treated; and all are worrisome as primary school is crucial to opportunities later in life45. The only special education that was identified by parents was a school for blind and deaf children (Krousar Thmey), indicative of the fact that there are almost no special education services available for children with complex or serious disabilities. History of disabling conditions and barriers to care Respondents in this study reported that 86% of the time their child’s disability was caused by illness or a congenital condition. In addition, 70% of respondents reported that their child’s problem started within the first year of life. Fever was identified most frequently when respondents were asked to describe their child’s disease, described as the “hot” disease, and often accompanied by convulsions or other symptoms. There is evidence46 that untreated illness in early childhood can lead to complications and permanent disabling conditions later on. This information clearly suggests that if we intend to prevent avoidable disability or complications of disability, then it is going to be necessary to intervene early in infancy and childhood.

In response to the onset of their child’s illness or congenital condition, some families did nothing, some went to see a traditional healer, and some went to a public hospital, health center, pharmacy or private provider or private facility. These results are similar to those found by the 2005 Cambodian Demographic Health Survey which also describes a range of services used when people are sick or injured47. There were no identifiable patterns of use (e.g. exclusively going to a traditional healer versus a hospital for certain kinds of conditions), suggesting perhaps that people are not sure of the best treatment facility for

44 World Bank (2005). World Development Report 2006 : Equity and Development. 45 Ibid. 46 UNICEF (2002). Facts for life. United Nations Children’s Fund: New York. 47 National Institute of Public Health, National Institute of Statistics [Cambodia] and ORC Macro (2006). Cambodia Demographic and Health Survey 2005. Phnom Penh, Cambodia and Calverton, Maryland, p 34.

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different types of conditions, or they may decide where to go based on what services and facilities they have heard of, or they may decide on services because of logistical considerations such as distance and cost. Although participants had a wide range of opinion about how helpful the services were, generally they seemed to view hospital services more favorably than other treatment choices. It is interesting to note that although the most commonly chosen first provider was the traditional healer (31%), only 17% of those who actually used a traditional healer rated the care as “helpful”. This suggests that people may be using traditional healers because of ease of access and low cost, but not because that would necessarily be their first choice for care. Respondents reported that often they wished they had gone to a hospital or used the health system for care, but they did not do so because of financial costs associated with care (the cost of care itself, the cost of transportation, opportunity costs from lost work time, and issues related to obtaining food). In other cases they either didn’t initially know about available services, or didn’t know how to get there (access and transportation issues). These results are similar to findings from other health system reports and studies in the country48 49. Interestingly, many had specific names of hospitals that they wished they had used that covered a wide variety of Cambodian provinces and even other countries as well. It is unclear how or when families learned about these other potential resources for their child. Finally, some families believed that the child’s disability really had to do more with bad luck or bad karma than anything else, and that nothing could be done to help the situation. Unfortunately, some respondents reported doing nothing at first or attempting self-treatment, and they were eventually unhappy and dissatisfied with the poor outcomes associated with these choices. Frequently mentioned issues concerning health-related costs and lack of knowledge suggest that demand-side barriers particularly kept people from seeking or obtaining needed health services for their child early in life, when the problem had just begun to manifest. These findings indicate the importance of developing strategies to lessen impediments to rapid health-seeking behavior. Respondents typically reported that they thought access to most types of providers and facilities was OK or good (Table 29), suggesting that they were less concerned about the availability of services, but more concerned about cost barriers. Pregnancy, maternal care and environment: impact on children’s conditions The majority (56%) of mothers in this study did not have any antenatal care. This proportion is higher than the 30% figure reported for rural women in the 2005 Cambodia

48 ibid 49 Knowles JC (2005). Health, Vulnerability and Poverty in Cambodia: Analysis of the 2004 Cambodia Socio-Economic Survey. Washington DC: World Bank.

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Demographic Health Survey (CDHS)50. The vast majority of women in our study delivered their babies at home accompanied by TBAs, (higher than home birth rates reported in the CDHS), and 56% of our respondents reported no postnatal care at all compared to 31% for rural residence in the CDHS. In addition, a large percentage (62%) of women reported that the child had health problems in infancy. These results suggest an association between inadequate antenatal care, lack of skilled provider birth assistance, limited postnatal contact with health professionals, and resultant health problems on the part of infants. More generally, we can observe that the mothers in this study had limited education, very limited resources, and unusually low levels of pregnancy-related health care. These associations do not necessarily indicate causal relationships between factors, but certainly highlight the potentially pernicious cycle in which limited education, impoverishment, and poor health outcomes (in this case disabilities in children) reinforce each other in a negative manner. Finally, results indicate that most respondents in our rural study still do not have access to clean water and adequate sanitation. It is easy to forget the importance of basic environmental conditions when considering strategies to prevent or minimize disability. Addressing the issue of clean water and adequate sanitation alone could potentially lead to vast improvements in health outcomes for pregnant women, infants, and young children51. MAJOR ISSUES IDENTIFIED We now shift to exploring what these results mean in terms of major issues, and recommendations to address identified concerns. The issues are listed in chronological order to highlight how the focus of attention must start with pregnant women, attend to very young infants at risk for disability, and finally address the needs of children with disabilities as well as their families. Maternal care and environment: adverse impact on children’s conditions:

• Many children who end up with permanent disabling conditions have congenital problems (associated with lack of maternal antenatal and postnatal care, treatable health problems, and basic environmental conditions) very early in life

History of disabling conditions: barriers to care

• Families do not seek needed treatment for their child early in life because they are concerned about costs, don’t know what services are available, or don’t realize

50 National Institute of Public Health, National Institute of Statistics [Cambodia] and ORC Macro (2006). Cambodia Demographic and Health Survey 2005. Phnom Penh, Cambodia and Calverton Maryland, p 139. 51 United Nations Development Programme (2006). Human Development Report 2006. New York: Palgrave Macmillan.

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that conditions in early infancy can lead to permanent disability (and may be treatable)

Functional status of children: gaps in availability and use of services and resources:

• There are currently very limited services available to help infants and children with established developmental disabilities, some existing services are underutilized, and many children do not end up attending school or participating fully in typical childhood activities

Demographic considerations and issues:

• Parents of children with disabilities have limited education, time, and money to address their children’s needs and they may not be aware of existing resources

RECOMMENDATIONS Secondary prevention is the critical bridge that connects primary health care and rehabilitation for people with identified disabilities. In secondary prevention, health problems are identified early, and services and referrals are provided to assure rapid, effective interventions that minimize the possibility of permanent disability. Philosophically, we favor an approach to prevention that is participatory and builds capacity at both the community and health system level. Whether working with families, community level health providers, provincial hospital administrators, or officials in the Ministry of Health, we need to always view our work through an empowerment perspective which has been shown to lead to more sustainable and effective outcomes 52. An approach to improving secondary prevention efforts will require a blend of direct actions, cultivation of health (and other) partnerships, and efforts to strengthen and build capacity within the health system. Each of these will be described in turn. Direct Action There is a need for screening and early detection training activities: Local health providers such as Village Health Support Group Volunteers, TBAs, and Health Centre staff need to be able to:

• Recognize serious illness and injury and refer children to hospitals for treatment • Recognize congenital or other childhood developmental problems and refer

families to community-based early intervention services (as they become available)

52 Wallerstein, N. (2006). What is the evidence of effectiveness of empowerment to improve health? WHO Regional Office for Europe’s Health Evidence Network (HEN), February 2006.

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• Recognize serious congenital or other childhood developmental problems and refer families to targeted hospitals that have expertise in early childhood evaluation and intervention as appropriate

There is a need for community-based early intervention services: Families of children with disabilities need low-cost, local, simple interventions and solutions to helping their children function as effectively as possible. Early intervention activities need to be participatory and empowering, so that families become actively involved in decision-making and problem-solving concerning the needs of their children. The goal is for the families to evolve into effective self-help groups. There is a need for education concerning how to use the health system: Families need to know what types of services are actually relevant and available, and how to access financial support for services. Cultivation of Health Partnerships There is a need for organizations involved in activities to improve maternal and child health outcomes to communicate and collaborate well It is impossible to overstate the importance of collaboration in the health sector to synergistically strengthen and develop a web of coordinated services that meet prevention needs. Effective partnerships in the health system will better support families in need of services. These partnerships need to include international organizations, local NGOs, and government facilities and providers. The end result of increased collaboration will be a seamlessly provided continuum of services and less duplication of services. There is a need to for communication and coordination between organizations addressing the needs of children with disabilities in different sectors (e.g. rehabilitation and education) The needs of children with disabilities do not neatly fit any particular sector boundaries and are actually multi-dimensional. For example, organizations involved in advocating for mainstreaming of children with disabilities in the schools need to work closely with organizations involved in rehabilitation in order to assure positive educational outcomes for children with disabilities. Strengthening the Capacity and Coordination of the Public Health System There is a need for the MOH to take the lead in assuring an effective continuum of health services to prevent avoidable disability The Department of Preventive Medicine in the MOH is the appropriate governmental body to assume leadership in assuring secondary prevention action in the health sector. By taking responsibility for secondary prevention, the MOH can then instruct the Public Health Department (PHD) concerning health service provision. In addition, it will be tremendously helpful if the evolving equity fund system provides funding for the kinds of services needed in secondary prevention.

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There is a need to address issues of financial cost in the health system Cost of services, transportation, food etc. are clearly critical to decision-making concerning using health services. It will be tremendously helpful if the evolving health equity fund system provides funding for the kinds of services needed in secondary prevention, covers associated costs (e.g. transportation) and is clearly communicated to those in need of financial support to use the health care system. There is a need for different departments in the MOH to work closely together to address secondary prevention needs The National Maternal and Child Health Centre is another component of the MOH that should also be involved because of the close links between maternal health, child health and disability prevention. The current Health Sector Strengthening Project (HSSP) is addressing concerns about maternal mortality, and focusing attention on antenatal, delivery and postnatal care issues. It is clear that these maternal concerns also impact the health of infants; thus there is a potential link between the HSSP and the secondary prevention activities described in this section of the report. HIB’s proposed role in secondary prevention efforts HIB is already an active participant in the rehabilitation sector and has been for many years. We have become increasingly involved in prevention through our work in the areas of road traffic safety and mine risk education. We would like to help improve the health care system by increasing our involvement in secondary prevention in the area of early screening, detection and early intervention services. We propose to become involved in the following activities: HIB plans to develop Secondary Prevention Outreach Teams in Siem Reap and Takeo that provide training and services associated with screening and early detection of children at risk for disability. The teams will also become involved in early intervention activities in the community. In many cases, there are simple techniques (e.g. related to feeding a child or positioning him/her correctly) that can lead to improved function and quality of life. And finally, the teams will become involved in raising family awareness of existing services and financial supports (e.g. pre-registration for health equity funds), and assisting families to overcome barriers to care so that they actually obtain needed health services. HIB is cognizant of the fact that many organizations are already engaged in providing effective prevention services through the health system and at the community level. We wish to develop closer linkages with these organizations in order to assure coordinated, non-duplicative service provision. Finally, HIB would like to work closely with the Department of Preventive Medicine in order to assure that secondary prevention efforts become part of the health system over time.

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SUMMARY OF THE CONTINUUM OF LEVELS OF HEALTH CARE PRIMARY PREVENTION SECONDARY

PREVENTION TERTIARY PREVENTION (REHABILITATION)

Prenatal and postnatal care are provided regularly to women Local providers receive training from NGOs to improve the quality of prenatal and postnatal care Local providers (health centres, TBAs etc.) can refer women for health services if the pregnancy seems to be high risk in any way Pregnant women need to have adequate nutrition and sanitation and shelter while they are pregnant Barriers to services (access and cost) are addressed adequately in the health system The referral system is functional so that families obtain and can follow through with referrals The Ministry of Health recognizes the relationship of primary, secondary and tertiary prevention, and advocates for health services on a continuum

Women are encouraged to deliver babies while accompanied by skilled providers Local providers are trained to refer women for health services if the delivery has problems or the newborn has a congenital condition or becomes ill or injured Doctors and nurses at identified hospitals have specialized training in recognizing and treating congenital conditions or health problems that manifest early in life Community-based providers have training to provide early intervention services to families and to foster self-help groups Community-based providers are knowledgeable about other resources that may benefit families, and make referrals as appropriate (e.g. to the PRC for mobility devices) Families know the importance of seeking immediate attention if the newborn or infant becomes ill Barriers to services (especially access and cost) are addressed adequately The Ministry of Health recognizes secondary prevention as an important component of an effective healthcare system and facilitates the development of secondary prevention

Rehabilitation professionals provide appropriate physical rehabilitation services to young children with disabilities (including technical services for children with clubfoot, cerebral palsy, etc.) Outreach workers provide community-based rehabilitation services to children and families Families are made aware of all of the services that might benefit their child with a disability, even in early infancy Families are encouraged to send their child with a disability to school The school system recognizes that children with disabilities should receive an education, and works to overcome barriers that may hinder school participation (e.g. need for special accommodations and equipment) Barriers to service (e.g. cost and transportation) are addressed adequately

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ANNEX 1: Age Pyramid in Cambodia: (Intercensal Data Population Survey 2004, Cambodian National Institute of Statistics)

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ANNEX 2:Organizational Chart of the Provincial Level Health

PROVINCIAL HOSPITAL

COMMUNE COUNCIL IS THE LOCAL AUTHORITY AND CONTROLS DIFFERENT DEPARTMENTS AT THE COMMUNE LEVEL, HEALTH CENTRE INCLUDED.

PHD Provincial Health Department

OD ( Operational District)

RH (Referral Hospital)

HC ( Health Centres)

Mother Child Health Supervisor has monthly or quarterly meetings with midwives

Midwives

VHSG (Village Health Support Group) Monthly Meeting

HCCMC (Health Centre Co Management Committee)

* TBAs (Traditional Birth Attendants) Monthly meeting at the HC level

All those groups are linked to each

HC.

HC 1

HC 2

HC 3

HC 4

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ANNEX 3

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ANNEX 4

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ANNEX 5 INFORMED CONSENT FORM Disability in Cambodian Provinces of Siem Reap and Takeo Survey Handicap International Belgium Handicap International Belgium is conducting a research study in Siem Reap and Takeo. The purpose of the study is to learn more about children with disabilities in Cambodia. We also want to know how people view the health care system and how they view people with disabilities. The information that we obtain through this survey will help us to identify strategies to minimize or possibly to prevent the development of disability in people who experience serious injury or illness. You are being asked to participate in this study because you have a child with a disability. Your participation will involve completing a survey that may take around 60 minutes to complete. Your involvement in this study is voluntary and you may choose not to participate. You can refuse to answer any of the questions at any time. All information that you provide will be kept confidential, and the final report that we write will not provide any names or information that would allow others to identify you. Results will be presented in summary form only. If you have any questions or concerns about this research project, please feel free to call Betsy VanLeit at 012-929-710. By signing this form at the bottom of the page, you are agreeing to participate in the study. Sincerely, Betsy VanLeit Secondary Prevention Project Manager Handicap International Belgium I understand the purpose of the study and I agree to participate: Name: ________________________ Date: _____________

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ANNEX 6