coping with childhood disability

COPING WITH CHILDHOOD DISABILITY FROM ANCIENT TIMES TO THE PRESENT "And Jonathan, Saul's son had a son that was lame of his legs. He was five years old…. , and his nurse took him up, and fled: and it came to pass, as she made haste to flee, that he fell, and became lame (II Samuel 4:4).

Mefiboset & King David. Club Semilla

Medical Research in Biblical Times Examination of Passages from the Bible, Exactly as Written

Liubov Ben-Nun

NOT FOR SALE

A disabled child represents a significant public health problem. What is the epidemiology of childhood disability? What are the causes? What are the consequences of disability in children? How humans can cope with disability in children? Biblical texts were examined and verses dealing with a disability in a child were studied closely from a contemporary viewpoint.

Author: Dr. Liubov Ben-Nun, Professor Emeritus

Ben Gurion University of the Negev Faculty of Health Sciences, Dept. of Family Medicine Beer-Sheva, Israel. Published by: B.N. Publication House. Israel. 2018. E-Mail: [email protected] Technical Assistance: ILana Siskal

NOT FOR SALE

CONTENTS FOREWORD

4

INTRODUCTION

6

THE BIBLICAL VERSES

9

PREVALENCE OF CHILDHOOD DISABILITY

10

PARENTING PRACTICES

20

QUALITY OF LIFE

25

COPING WITH DISEASES

31

SEXUAL ABUSE

47

IMPACT ON PARENTS

50

FAMILY ADJUSTMENT/ADAPTATION

53

UNINTENTIONAL INJURIES

66

PREVENTION

78

ADOPTED CHILDREN

82

SPECIAL HEALTH NEEDS

87

MANAGEMENT

94

CONCLUSION

119

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Coping with childhood disability

FOREWORD A literature review was used to examine the process of parental acceptance regarding disability in a child. The results identify two main theoretical concepts, stages of grief and chronic sorrow, which describe the emotional responses that parents express following the diagnosis of a child's disability. Stages of grief involve a long-term process through which parents struggle to accept their child's condition, eventually leading to acceptance of their child's disability. Alternately, chronic sorrow describes parental life-long sadness throughout their child's lifetime, periodically repeating at critical times in their child's development. Researchers in Japan have developed a disability acceptance model that combines both concepts. The findings showed that analysis and interpretation of the parental acceptance process varied with each researcher. It is essential for health care professionals who provide support to children with disabilities to understand the process which parents as primary caregivers undergo to accept the conditions of their child's disability. Knowledge of the main theoretical concepts will give them a broader perspective of the parental acceptance experience (1). The process of parental acceptance of a child's disability is complex and involves a myriad of factors, including the nature of the child's disability, factors related to the parents and societal factors. Despite the type of disability and the severity of that disability often being the most significant factors related to the process of acceptance, the majority of previous studies have combined multiple disabilities into a single category. The point at which parent and child begin to live together with a disability marks a "beginning." The nature and timing of this beginning differs depending on the disability and thus has a large impact on the process of acceptance. Despite acceptance patterns diverging between sexes, the majorities of previous studies have sampled only mothers and not fathers (2). Research indicates that family reaction to the birth of a disabled child changes according to the type of disability and the child's diagnostic category. The differences are probably an indirect consequence of anticipated or actual reactions by those surrounding the disabled child and the family, in addition to parental reactions. Many researchers have recently mentioned the positive coping and functioning of many families with developmentally disabled children.

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In the past there was a tendency to emphasize issues of illness and pressures, spousal strain and maladjustment within the family, while presently they are replaced with questions concerning positive adjustment, satisfaction, acceptance, and spousal harmony. Rather than perceiving the family as a helpless victim, it is perceived as a unit that adapts by a process of structuring. Professionals must acknowledge the importance of the family, this change towards a positive attitude towards disability and that the controls decisions concerning the disabled child and the family (3). Parental positive and negative appraisals of the family impact of childhood disability are tested as early predictors of parental selfesteem and overall family adjustment in households with young children with intellectual and developmental disabilities. Within 103 Canadian families, 103 mothers and 55 fathers independently completed interviews in their home at two time points: 6 months after their child entered childhood disability services, and one year later. Longer-term family adjustment predicted by level of parental negative appraisal of the family impact of disability, and by level of self-esteem, for both mothers and fathers. For mothers, positive appraisal of childhood disability predicted early family adjustment and was related to enhanced self-esteem. In conclusion, gender differences in parental appraisal of the family impact of childhood disability appear to merge over time. Both positive and negative appraisals appear to coexist and are predictive of mothers' and fathers' perceived overall family adjustment in the longer term (4). References 1. Anan A, Yamaguchi M. Process of parental acceptance of a child's disability: literature review. J UOEH. 2007;29(1):73-85. 2. Anan A, Yamaguchi M. A study of the factors that affect parental acceptance of children's disabilities - a literature review. J UOEH. 2007;29(2):183-95. 3. Kandel I, Merrick J. The child with a disability: parental acceptance, management and coping. ScientificWorldJournal. 2007;7:1799-809. 4. Trute B, Hiebert-Murphy D, Levine K. Parental appraisal of the family impact of childhood developmental disability: times of sadness and times of joy. J Intellect Dev Disabil. 2007;32(1):1-9.

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INTRODUCTION The results of the Early Intervention Collaborative Study, a longitudinal investigation of the cognitive and adaptive behavior development of children with developmental disabilities and the adaptation of their parents, extending from infancy through middle childhood were presented. Conceptual models of child and family development were generated, tested and contributed to the knowledge base that informs social policy and practice. The sample for the investigation consisted of 183 children with Down syndrome, motor impairment, developmental delay and their families who were recruited at the time of their enrollment in an early intervention program in Massachusetts or New Hampshire. Data were collected at five time points between entry to early intervention and the child's 10th birthday. Home visits were conducted at each time point and included child assessments, maternal interview, and questionnaires completed independently by both parents. Trajectories in children's development and parental well-being were analyzed using hierarchical linear modeling. Predictor variables were measured at age 3 years when children were exiting early intervention programs. Children's type of disability predicted trajectories of development in cognition, social skills, and daily living skills. Children's type of disability also predicted changes in maternal (but not paternal) childrelated and parent-related stress. Beyond type of disability, child self-regulatory processes (notably behavior problems and mastery motivation) and one aspect of the family climate (notably motherchild interaction) were key predictors of change in both child outcomes and parent well-being. A different aspect of the family climate - family relations - also predicted change in child social skills. Parent assets, measured as social support and problem-focused coping, predicted change in maternal and paternal parent-related stress respectively. These findings have implications for both the science of child development and the policies and practices of developmental intervention (1). The results of a nonexperimental, longitudinal investigation of developmental change in 190 infants and their families were investigated after 1 year of early intervention services. The Early Intervention Collaborative Study (EICS), conducted in association with 29 community-based programs in Massachusetts and New

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Hampshire, was designed to assess correlates of adaptation in young children with disabilities and their families over time, to inform social policy by analyzing the influences of family ecology and formal services on child and family outcomes, and to generate conceptual models to guide further investigation. The study sample (mean age at entry = 10.6 months) includes 54 children with Down syndrome, 77 with motor impairment, and 59 with developmental delays of uncertain etiology. Data were collected during two home visits (within 6 weeks of program entry and 12 months later) and included formal child assessments, observations of mother-child interaction, maternal interviews, and questionnaires completed independently by both parents as well as monthly service data collected from service providers. Child and family functioning varied considerably. Developmental change in the children (psychomotor abilities, adaptive behavior, spontaneous play, and child-mother interaction skills) was influenced to some extent by gestational age and health characteristics, but the strongest predictor of change was the relative severity of the child's psychomotor impairment at study entry. Families demonstrated generally positive and stable adaptation (in terms of the effect of rearing a child with disabilities on the family, parenting stress, and social support), despite persistent challenges with respect to mother-child interaction and differences in reported stress between mothers and fathers. Documentation of services revealed that early intervention is a complex and multidimensional experience that spans multiple public and private systems. Vulnerable and resilient subgroups within the sample were identified, and different correlates of adaptive change were demonstrated (2). The main purpose of this integrative review was to summarize existing nursing research on the sibling experience of living in a family that includes a child with a chronic illness or disability, specifically highlighting nurse researchers who have conducted more than two studies concerning the sibling experience. A secondary purpose was to determine to what extent nurse researchers interested in the sibling experience have used or been informed by a developmental science perspective. A final purpose was to discuss future research needed to further develop the existing knowledge base concerning the sibling experience of living with childhood chronic illness and disability. Forty of 86 published research articles were authored or co-authored by nurses. There were four nurse researchers with

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programs of research. Most studies used a categorical approach and were descriptive, cross-sectional designs; there were few longitudinal studies. Multiple factors were identified that affect how siblings respond to childhood chronic illness and disability (3). The influence of disabilities on placement outcomes was examined for 277 children who were removed from their biological parents due to substantiated maltreatment. Results indicated that children with a disability were less likely to reunify and more likely to reside in nonkin foster care two years later than typical children. Children with cognitive, emotional/behavioral, and physical disabilities were over four times more likely to be permanently living in nonkin foster care than to be reunified (4). Forty matched healthy Latino and non-Latino siblings (ages 8-14 years) of children with developmental and physical disabilities completed interviews and questionnaires assessing sibling knowledge of and adjustment to disability and sibling global psychological functioning. One-way analyses of variance revealed Latino siblings to have significantly less accurate information about the disability and more internalizing problems than non-Latino siblings. Sibling and parent wishes for the healthy sibling reflected cultural values. Latino siblings of children with chronic disabilities may be at risk for internalizing psychological problems (5). Thus, a disabled child represents a significant public health problem. What is the epidemiology of childhood disability? What are the causes? What are the consequences of disability of children? How humans can cope with disability in children? Biblical texts were examined and verses dealing with a disability in one child were studied closely from a contemporary viewpoint. Exclusion criteria included children who suffered from cancer. References 1. Hauser-Cram P, Warfield ME, Shonkoff JP, et al. Children with disabilities: a longitudinal study of child development and parent well-being. Monogr Soc Res Child Dev. 2001;66(3):i-viii, 1-114; discussion 115-26. 2. Shonkoff JP, Hauser-Cram P, Krauss MW, Upshur CC. Development of infants with disabilities and their families: implications for theory and service delivery. Monogr Soc Res Child Dev. 1992;57(6):v-vi, 1-153. 3. Van Riper M. The sibling experience of living with childhood chronic illness and disability. Annu Rev Nurs Res. 2003;21:279-302. 4. Romney SC, Litrownik AJ, Newton RR, Lau A. The relationship between child disability and living arrangement in child welfare. ChildWelfare. 2006;85(6):965-84. 3. Lobato DJ, Kao BT, Plante W. Latino sibling knowledge and adjustment to chronic disability. J Fam Psychol. 2005;19(4):625-32.

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THE BIBLICAL VERSES According to the Books of Samuel II of the Bible, Mephibosheth was the son of Jonathan, grandson of King Saul and the father of Micha (Samuel II 9:6,12). Mephibosheth was five years old when both his father and grandfather died at the Battle of Mount Gilboa. After the deaths of Saul and Jonathan, Mephibosheth's nurse took him and fled in panic. In her haste, the child fell: "And Jonathan, Saul's son had a son that was lame of his legs. He was five years old when tidings came of Saul and Jonathan out of Jezreel, and his nurse took him up, and fled: and it came to pass, as she made haste to flee, that he fell, and became lame. And his name is Mephiboshet" (II Samuel 4:4).

Now, King David began to seek the remaining members of Saul’s family. The son of his best friend Jonathan, Mefivoshet, who was lame, was located and brought to the King. Subsequently, the King adopted Mefivoshet, and regarded him as his own son.

Mephibosheth kneeling before David. Mephibosheth is brought to David by Ziba. Illustration from the Maciejowski Bible.

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Reference 1. Ben-Nun L. Mepfiboshet – a new family member. In Ben-Nun L. (ed.). The Family and Diseases of King David. B.N. Publication House. Israel. 2015, pp. 74 9. Available Liubov Ben-Noun (Nun) at Researchgate.net/.

PREVALENCE OF CHILDHOOD DISABILITY The contribution of medical impairments to functional disability and school activity limitations were examined in 41,300 school-age children participating in the 1994-1995 National Health Interview Survey. The 1994 and 1995 National Health Interview Survey and Disability Interview Supplement samples provided International Classification of Diseases, Ninth Revision medical impairment codes for children with functional limitations or school activity limitations in a nationally representative U.S. sample. Functional limitations were distributed as follows: mobility 12.4/1000 (95% confidence interval [CI] 11.1-13.6), self-care 8.8/1000 (95% CI 7.7-9.8), communication 52.9/1000 (95% CI 50.2-55.5), and learning 104.6/1000 (95% CI 100.7-108.4). Functional disability status was classified as 4.1% mild, 5.9% major, and 1.9% multiple. School activity limitations included 4.1% needing or receiving special education, 0.7% unable to attend, and 0.9% limited attendance. International Classification of Diseases, Ninth Revision impairment codes reported in conjunction with medical usage were categorized as physical disorders (n=1,251; e.g., leukemia, diabetes), asthma (n=916), neurodevelopmental disorders (n=802; e.g., cerebral palsy, epilepsy, mental retardation, autism, blindness, and deafness), and learning-behavior disorders (n=806; e.g., attention-deficit/hyperactivity disorder, learning disability, and anxiety) for children with functional or school activity limitations. Of children with multiple functional disabilities, 29.9% had neurodevelopmental disorders, 27.1% had learning-behavior disorders, 18.1% had physical disorders, 4.2% had asthma, and 20.8% did not have an identified medical impairment because they had not received medical services in the past year. Among children requiring special education, physical disorders accounted for 9.4%, neurodevelopmental disorders for 16.7%, learning and behavior disorders for 17%, asthma for 3.4%, and 53.4% did not have an

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identified medical impairment because they had not received medical services in the past year (1). Regulations concerning services for handicapped children in France have defined the notion of multi-handicap. There are, however, divergences in the procedures for applying this definition, and differences in the prevalence in different areas. A survey in three French departments provided data about disabled children born between 1975 and 1985 who received services from the departmental committee for special education or from day hospitals. The data were systematically collected by a physician using medical files. The results showed that the group of multi-handicapped children was heterogeneous. The most restrictive definition (motor disability with profound mental retardation, bed-ridden or restricted to a chair) resulted in a prevalence of 0.73%. A broader definition based on the concept of zero autonomy, but excluding mild or moderate mental retardation, resulted in a prevalence of 1.28%. In conclusion, the importance of specifying the objectives of a definition selected for operational reasons is stressed in order to improve the estimation of specific needs (2). A current national profile of the prevalence and impact of parentreported disabling mental health conditions were provided in U.S. children. A cross-sectional descriptive analysis of 99,513 children younger than 18 years old included in the 1992-1994 National Health Interview Survey (NHIS). The response rate exceeded 94% in each year. Disability was defined as the long-term reduction in a child's ability to perform social role activities, such as school or play, as a result of his/her mental health condition. On average, 2.1% of U.S. children were reported to suffer from a disabling mental health condition in 1992-1994. The most common reported causes of disability included mental retardation, attention-deficit hyperactivity disorder, and learning disabilities. While national prevalence estimates were produced for some low-prevalence conditions such as autism (38/100,000), for many specific diagnoses the reported prevalence rates were too low for accurate national population estimates using this data set. Logistic regression analysis demonstrated that prevalence of a disabling mental health condition was higher for older children; males; children from low-income, single-parent families; and those with less education. These conditions were also associated with high rates of special education

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participation (approximately 80%) and health system use. In conclusion, the NHIS provides a useful and untapped resource for estimating the prevalence of disabling mental health conditions. These conditions are increasingly prevalent and have a profound impact on children and the educational and health care systems (3). A national health and disability profile of Canadian school-aged children based on the World Health Organization's definitions of health condition and disability that would facilitate international comparisons of child health data was provided. Data were used from the National Longitudinal Survey of Children and Youth, 1994 - 95 population-based sample of 22,831 children. An estimated 30.3% of Canadian children aged 6 to 11 had one or more chronic physical health conditions/impairments, while 3.6% had activity-limiting conditions/impairments. Children living with one parent were significantly more likely to have activity-limiting conditions/ impairments than those living with two parents. Children with conditions/impairments, particularly those with activity limitations, were significantly more likely than children without health problems to have experienced mental health conditions and learning disabilities, missed school days, received special education, visited health professionals, been hospitalized and used prescription medication. In conclusion, important differences were found among children in a number of areas as a function of overall physical health status. The findings emphasize the importance of measuring activity limitations distinctly from chronic conditions and impairments, and, perhaps, of measuring impairments distinctly from chronic conditions, and of comparing children with such health problems to children without health problems in order to obtain a more accurate picture of the impact of health on children's lives. The World Health Organization's distinct definitions of health condition and disability facilitate a dimensional approach for describing child health that can serve to clarify this field of study and improve comparability of data across countries (4).

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Although the evolution of the prevalence of cerebral palsy is well documented, much less is known about the evolution of the prevalence of other disabilities such as mental retardation, sensorial defects, autism and psychosis. A population-based survey was carried out in 1992-1993 in three French departments. All disabled children born between 1976 and 1985 and receiving a special education and/or financial assistance were systematically registered. The comparison of three cohorts of children born in 1976-1978, 1979-1981 and 1982-1984 using the test for trend in proportion showed a significant decrease (p=0.03) in the prevalence of severe mental retardation, after exclusion of Down syndrome. This decrease was significant for severe mental retardation associated with psychosis. The time trend prevalence for cerebral palsy increased (p=0.03) but was irregular. The time trend prevalence of other disabilities (other motor defects, severe sensorial disabilities, autism and psychosis) did not change significantly. A detailed analysis of severe mental retardation and cerebral palsy was performed by geographical area, age at first registration and type of disability. In conclusion, the increase in prevalence of cerebral palsy is possibly due to earlier registration of disabled children. The decrease in prevalence of severe mental retardation does not seem to be due to recruitment bias, but there is a possibility of classification bias (5). A review of the prevalence rates of chronic health conditions in populations of children with intellectual disability was provided. Totally, 2,994 relevant studies were searched by searching Medline, Cinahl, and PsycINFO databases from 1996 to 2008. Thirty one studies had sufficient methodological quality. The 6 most prevalent chronic health conditions in children with intellectual disability were epilepsy (22.0/100), cerebral palsy (19.8/100), any anxiety disorder (17.1/100), oppositional defiant disorder (12.4/100), Down syndrome (11.0/100), and autistic disorder (10.1/100). The reported prevalence rates of chronic health conditions in this population were much higher than in the general population. However, both the number of studies that were included and the number of chronic health conditions they reported about were limited. There is an urgent need for better evidence on the prevalence of chronic health conditions among children with intellectual disability (6).

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The characteristics of Mexican children and adolescents 5-17 years with severe functioning difficulties and disability were described and their participation in child labor was investigated. Using data from the National Survey of Boys, Girls and Women in Mexico 2015 prevalence of functioning difficulties and disability were estimated and logistic regression was used to explore the association between this condition and child labor. While 11.2% of Mexicans 517 years-old has severe functioning difficulties or disability, 13.4% work. The functioning difficulty and disability domains with the highest prevalence are experiencing anxiety (5.4%) and depression (1.5%) daily. Children and adolescents with severe functioning difficulties and disability were 70% more likely to do child labor (Odds ratio [OR] 1.7; 95% CI 1.2-2.4). Educational lag doubles the likelihood of doing child labor (OR 2.2; 95% CI 1.5-3.3). In conclusion, guaranteeing educational opportunities and respect for the rights of children with severe functioning difficulties and disability is essential to achieve development of their full potential (7). The prevalence and factors associated with severe child functioning difficulties and disability (CFD) were described among two to four year old children in Mexico, and the probability of presenting CFD were estimated based on specific population profiles. The sample consists of 5,104 children who participated in the National Survey of Children and Women 2015. CFD prevalence was 2%, which means at least 130,000 two to four year-old children are at risk of experiencing severely limited participation in an unaccommodating environment. The probability of presenting CFD is dramatically higher in specific sub-groups of the population, in particular, male children of women with low education, who live in the poorest households. In conclusion, a significant proportion of Mexican children face important challenges due to functioning difficulties and disability. Public policies must be developed to accommodate the needs of these children and provide a proper environment for their development (8). Epidemiological data on childhood disability are lacking in Low and Middle Income countries (LMICs) such as Malawi, hampering effective service planning and advocacy. The Key Informant Method (KIM) is an innovative, cost-effective method for generating population data on the prevalence and causes of impairment in children. The KIM was used to estimate the prevalence of

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moderate/severe, hearing, vision and physical impairments, intellectual impairments and epilepsy in children in two districts in Malawi and to estimate the associated need for rehabilitation and other services. Five hundred key informants (KIs) were trained to identify children in their communities who may have the impairment types. Identified children were invited to attend a screening camp where they underwent assessment by medical professionals for moderate/severe hearing, vision and physical impairments, intellectual impairments and epilepsy. Approximately 15,000 children were identified by KIs as potentially having an impairment of whom 7,220 (48%) attended a screening camp. The estimated prevalence of impairments/epilepsy was 17.3/1000 children (95% CI 16.9-17.7). Physical impairment (39%) was the commonest impairment type followed by hearing impairment (27%), intellectual impairment (26%), epilepsy (22%) and vision impairment (4%). Approximately 2,100 children per million population could benefit from physiotherapy and occupational therapy and 300 per million were in need of a wheelchair. An estimated 1,800 children per million populations have hearing impairment caused by conditions that could be prevented or treated through basic primary ear care. Corneal opacity was the leading cause of vision impairment. Only 50% of children with suspected epilepsy were receiving medication. The majority (73%) of children was attending school, but attendance varied by impairment type and was lowest among children with multiple impairments (38%). In conclusion, using the KIM more than 2,500 children were identified with impairments in two districts of Malawi. As well as providing data on child disability, rehabilitation and referral service needs which can be used to plan and advocate for appropriate services and interventions, the method also has an important capacity building and disability awareness raising component (9). A large scale prevalence study for child disability of those under 15 years was conducted in a representative Saudi population with accurate demographic records. An 83% response rate in children of six to 15 years (1,280 out of 1,544 children registered) of age and a 100% response rate in children under five years (all the 1,151 registered) was achieved. Thirty one children had severe impairment and 322 had minor impairment. This accounted for 3.76 per 1000

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total population with major impairment and 42.8 per 1000 total for minor impairment (10). The prevalence, distribution and determinants of handicap were determined among children in Saudi Arabia. A field survey involved 60,630 children less than 16 years selected from all regions of the country. Information was collected by questionnaire for all children and those with a handicap, or suspected of having a handicap, were referred for confirmatory diagnosis. Of the total sample, 3,838 (6.33%) were recorded as handicapped. The region with the highest proportion of handicapped children was Jazan (9.90%); Riyadh had the lowest (4.36%). Motor disability was the commonest kind of handicap (3.0% of the total sample), followed by learning disability (1.8%). The highest proportion of disability was found among children with handicapped parents, those whose mothers were older at the time of their birth and those whose mothers had not had medical care and necessary vaccination during pregnancy (11). The prevalence of handicapping disabilities among children up to 15 years of age was identified and their epidemiological pattern in the eastern part of Jeddah was evaluated. In a population-based cross-sectional household survey in the eastern Jeddah area, Saudi Arabia, a multistage sampling method was applied to screen children in 875 houses using the ten questions survey tool for identification of disabilities. Further information collected for detected disabilities included possible risk factors, cause of the disability as perceived by the family and services previously provided to the child. A total of 137 cases of disability were detected giving a point prevalence rate of 36.7 per 1,000 children. Twenty-nine children (21.2%) were discovered for the first time during the survey. The majority of cases were male (57.7%) and the mean age for all cases was 10 years (SD = 5.5) with no case detected under one year of age. Disabled children were in the fourth or fifth birth order among their brothers and sisters and 47 (34%) of them were recorded as a second or third disability in the same family. Number of disabilities in the same child varied widely: 59% of cases had a single disability; 22% had two conditions and 19% had three or more conditions. Speech motor and mental disabilities ranked top of the disabilities detected by the tenquestion tool. The commonest cause of these disabilities as perceived by the family was hereditary diseases followed by childhood illnesses. Significant risk factors associated to these

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conditions included larger number of children in the family, older age of either parent histories of handicapping conditions in the original families of either of the parents and presence of handicapping condition in the mothers. Families reported lack of services provided to their disabled children in the community. In conclusion, the survey tool managed to document successfully. A prevalence rate of childhood disabilities in the community with a general picture of their types and suspected causes were quite comparable to that found in Saudi Arabia. It also reported a low service delivery for these disabilities and identified some risk factors related to their occurrence (12). Intellectual disability (ID) is a global public health concern. Prevalence of ID and its association with age and other demographic factors is required for planning purposes in India. The age-adjusted prevalence of ID was analyzed in rural and urban populations and its correlation with age in children and adults. Disability data published in the report (2002) of National Sample Survey Organization were analyzed, using Z-test to measure differences in age-adjusted prevalence. Overall, India has a prevalence of 10.5/1000 in ID. Urban population has slightly higher rate (11/1000) than rural (10.08/1000; p=0.044). Age correlated with prevalence of ID in rural children (ϱ =0.981, p=0.019) as well as in children (ϱ = -0.954, p=0.000) and adults (ϱ = -0.957, p=0.000) in urban population. The possibility of confounding or the existence of covariates for children in urban settings was noted. In conclusion, the results of this study match findings in other epidemiological studies. However, multistage, large-scale studies are recommended for investigating prevalence rates with different severity levels of ID (13). Although research tends to focus on whether children with disability are more at risk of violence victimization, conclusive evidence on the association, especially in non-Western settings, is lacking. Using a large and representative sample of school-aged children in Hong Kong (n=5,841, aged 9-18 years), the research gap was filled by providing reliable estimates of the prevalence of disability and the direct and indirect experiences of violence among children with disability. The prevalence of child maltreatment, parental intimate partner violence (IPV), and in-law conflict were compared to explore the factors related to the association between disability and violence victimization. The prevalence of disability

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among children was about 6%. Children with disability were more likely to report victimization than those without disability: 32% to 60% of the former had experienced child maltreatment, and 12% to 46% of them had witnessed IPV between parents or in-law conflict. The results of a logistic regression showed that disability increased the risk of lifetime physical maltreatment by 1.6 times. Low levels of parental education and paternal unemployment were risk factors for lifetime child maltreatment. The risk of child maltreatment could have an almost six fold increase when the child had also witnessed other types of family violence (14). Childhood disability is not uncommon, but data at the national level are limited, especially those on the changes in the prevalence over time. On the basis of the Disabled Welfare Act, Taiwan began to certify disabled residents and provide various services in 1980. The cases receiving services were registered, and the registry provided a rare opportunity for studying childhood disability at the national level. Using the data from 2000 to 2011, the age-specific prevalence of all disability combined were calculated and assessed the changes over time. The prevalence rate and the proportion in all disabilities combined for each disability category were calculated and the trends were assessed. As certification before 3 years old was generally discouraged by the government, analyses were limited to children between 3 and 17 years old. The registered cases ranged from 49,242 to 61,717 from 2000 to 2011 and ID, had been the leading category all through the years. The proportion of autism spectrum disorders (ASD) had been increasing rapidly and became the third leading disability in 2011. The prevalence of all disabilities combined increased constantly from 9.98/1000 to 15.41/1000 (p1.00 D), myopia (≥ 1.00D) and astigmatism (≥ ±1.00 D) were found in 18.6%, 24.3%, and 27.1%, respectively, in group 1. Six children in this group had defective near vision. Sixteen (80%) children with Down syndrome had refractive error. Seven (50%) children with developmental disorder showed decreased contrast sensitivity. In conclusion, prevalence of uncorrected refractive error was much higher in children with special needs. Prevalence of strabismus, nystagmus, and reduced contrast sensitivity was also higher in children with special needs. Early vision screening, visual function assessment, correction of refractive error, and frequent follow-up are recommended (3). The process of parental coping with diabetic children was evaluated in early childhood. The parental coping process was followed for a four-week period after the diagnosis of diabetes. The parents of two girls whose diabetes was diagnosed in early childhood served as study subjects. The data were collected by interviewing and observing the parents over four separate periods, first in hospital and later at home. The data were analyzed by the time series and content analysis methods. The main categories were formulated on the basis of coping theories. The subcategories were developed inductively from the data. Six phases of the parental coping were identified, which were named: 1]. Disbelief, 2]. Lack of information and Guilt, 3]. Learning of Care, 4]. Normalization, 5]. Uncertainty and 6]. Reorganization. In the different phases of parental coping the parents' experience of stress, coping strategies and sense of control varied. In the phase of Disbelief, parents tried to explain away the child's diabetes by questioning the diagnosis. The initial information

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given to the parents regarding their child's diabetes proved to be very important for parental coping. In the second phase of Lacking Information and Guilt, the parents sought for a reason for their child's diabetes and they felt guilty about it. As coping responses, the parents sought support from each other and from people who have undergone the same experience. In the Learning of Care phase, they recognized the demands caused by diabetes and took responsibility for the child's care. The parents responded that supervision based on their problems was the best. In the Normalization phase, the parents prepared to go home with the diabetic child. Getting back to normal life was one of the most effective parental coping responses. In the Uncertainty phase, the care to be given to the diabetic child changed the daily routines of the family. In the Reorganization phase, the parents adapted to the diagnosis of diabetes and the care of the diabetic child. The parents felt that the life of the family became normalized and controlled. The important parental coping responses consisted of concrete models of functioning, which they developed to control the demands caused by the child's diabetes (4). Families who have a child with epilepsy show a significant impact on both the dynamics of the child's development and family systems in a social context. Knowledge of a family's lived experience in dealing with the early stages of their child's illness will provide a deeper understanding of their life and coping process. Most studies have focused on the child's developmental issues, parental attitudes, coping strategies and the child's adjustment. In order to assist families to cope with the early stage of having a child with epilepsy, nurses need to understand the nature of a family's lived experience. The essence of the family health-illness transition experience was investigated from the parental perspective when a child is afflicted with epilepsy. Colaizzi's phenomenological approach was used. Indepth interviews were conducted with ten couples with regard to the first one and a half years after the diagnosis of epilepsy. Ten couples from two medical centers in Taiwan were evaluated. The age range of the children at diagnosis was 0.2-4.3 years. Open attitude and imaginative variation techniques were used to investigate the meanings of the experience. This study used Colaizzi's method was used with both destructured and restructured analysis. Lincoln and Guba's trustworthiness criteria were employed to evaluate methodological rigor. Three concepts emerged: parents'

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psychological reactions, parental coping patterns and family resources. The parents' psychological reaction was that of being emotionally traumatized and physically exhausted. Parental coping patterns were vigilant parenting and aimed at reframing roles, facing the social challenge and assisting the child's social re-integration. The nature of family resources was family resiliency. The findings provide a scientific knowledge base for nurses when assisting parents and children during the health to illness transitional phase following a diagnosis of epilepsy (5). Deformations have been attributed to supernatural causes since antiquity. Cerebral palsy (CP) was associated with God's wrath, witchcraft, the evil eye, or maternal imagination. Greek scholars recommended prevention by tight swaddling, a custom that persisted into modern times. In the middle Ages, the midwife's negligence was held responsible as was difficult teething. Morgagni described in 1769 that the neonatal brain can liquefy, and Bednar described leukomalacia in 1850 as a distinct disorder of the newborn. In 1861, Little associated CPs with difficult or protracted labor and neonatal asphyxia, but he was challenged by Freud, who in 1897 declared that most cases are prenatal in origin. In 1868, Virchow demonstrated inflammatory changes, a view recently confirmed by Leviton and Nelson. Although a causal relationship of CP to the birth never has been established, the habit to put the blame for CP on someone remained a frequent attitude (6). Most children enjoy healthy childhoods with little need for specialized health care services. However, some children experience difficulties in early childhood and require access to and utilization of considerable health care resources over time. Although impaired motor function is the hallmark of the CP syndromes, many children with this development disorder also experience sensory, communicative, and intellectual impairments and may have complex limitations in self-care functions. Although caregiving is a normal part of being the parent of a young child, this role takes on an entirely different significance when a child experiences functional limitations and possible long-term dependence. One of the main challenges for parents is to manage their child's chronic health problems effectively and juggle this role with the requirements of everyday living. Consequently, the task of caring for a child with complex disabilities at home might be somewhat daunting for

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caregivers. The provision of such care may prove detrimental to both the physical health and the psychological well-being of parents of children with chronic disabilities. It is not fully understood why some caregivers cope well and others do not. The approach of estimating the "independent" or "direct" effects of the care recipient's disability on the caregiver's health is of limited value because 1] single-factor changes are rare outside the context of constrained experimental situations; 2] assumptions of additive relationships and perfect measurements rarely hold; and 3] such approaches do not provide a complete perspective, because they fail to examine indirect pathways that occur between predictor variables and health outcomes. A more detailed analytical approach is needed to understand both direct and indirect effects simultaneously. The primary objective of the current study was to examine, within a single theory-based multidimensional model, the determinants of physical and psychological health of adult caregivers of children with CP. A stress process model was developed and applied structural equation modeling with data from a large cohort of caregivers of children with CP. This design allowed the examination of the direct and indirect relationships between a child's health, behavior and functional status, caregiver characteristics, social supports, and family functioning and the outcomes of caregivers' physical and psychological health. Families (n=468) of children with CP were recruited from 19 regional children's rehabilitation centers that provide outpatient disability management and supports in Ontario, Canada. The current study drew on a population available to the investigators from a previous study, the Ontario Motor Growth study, which explored patterns of gross motor development in children with CP. Data on demographic variables and caregivers' physical and psychological health were assessed using standardized, selfcompleted parent questionnaires as well as a face-to-face home interview. Structural equation modeling was used to test specific hypotheses outlined in the conceptual model. This analytic approach involved a 2-step process. In the first step, observed variables that were hypothesized to measure the underlying constructs were tested using confirmatory factor analysis; this step led to the so-called measurement model. The second step tested hypotheses about relationships among the variables in the structural model. All of the hypothesized paths in the conceptual model were tested and

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included in the structural model. However, only paths that were significant were shown in the final results. The direct, indirect, and total effects of theoretical constructs on physical and psychological health were calculated using the structural model. The most important predictors of caregivers' well-being were child behavior, caregiving demands, and family function. A higher level of behavior problems was associated with lower levels of both psychological (beta = -.22) and physical health (beta = -.18) of the caregivers, whereas fewer child behavior problems were associated with higher self-perception (beta = -.37) and a greater ability to manage stress (beta = -.18). Less caregiving demands were associated with better physical (beta = .23) and psychological (beta = .12) well-being of caregivers, respectively. Similarly, higher reported family functioning was associated with better psychological health (beta = .33) and physical health (beta = .33). Self-perception and stress management were significant direct predictors of caregivers' psychological health but did not directly influence their physical well-being. Caregivers' higher self-esteem and sense of mastery over the caregiving situation predicted better psychological health (beta = .23). The use of more stress management strategies was also associated with better psychological health of caregivers (beta = .11). Gross income (beta = .08) and social support (beta = .06) had indirect overall effects only on psychological health outcome, whereas self-perception (beta = .22), stress management (beta = .09), gross income (beta = .07), and social support (beta = .06) had indirect total effects only on physical health outcomes. In conclusion, the psychological and physical health of caregivers, who were primarily mothers, was strongly influenced by child behavior and caregiving demands. Child behavior problems were an important predictor of caregiver psychological well-being, both directly and indirectly, through their effect on selfperception and family function. Caregiving demands contributed directly to both the psychological and the physical health of the caregivers. The practical day-to-day needs of the child created challenges for parents. The influence of social support provided by extended family, friends, and neighbors on health outcomes was secondary to that of the immediate family working closely together. Family function affected health directly and also mediated the effects of self-perception, social support, and stress management. In families of children with CP, strategies for optimizing caregiver

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physical and psychological health include supports for behavioral management and daily functional activities as well as stress management and self-efficacy techniques. The data support clinical pathways that require biopsychosocial frameworks that are family centered, not simply technical and short-term rehabilitation interventions that are focused primarily on the child. In terms of prevention, providing parents with cognitive and behavioral strategies to manage their child's behaviors may have the potential to change caregiver health outcomes. This model also needs to be examined with caregivers of children with other disabilities (7). Children with disabilities in Sub-Saharan Africa depend for a large part of their functioning on their parent or caregiver. Parental stress and support of parents of children with spina bifida were examined in Uganda. Perceived stress and support of parents of children with spina bifida living in Uganda and the factors that influence them were investigated. A total of 134 parents were interviewed. Focus group discussions were held with four parent support groups in four different regions within the country. The Vineland Adaptive Behaviour Scales, Daily Functioning Subscales and Parental Stress Index Short Form (PSI/SF) were administered to measure the child's daily functioning level and parental stress levels. Parental stress was high in the study population with over half of the parents having a > 90% percentile score on the PSI/SF. Stress outcomes were related to the ability to walk (Spearman's correlation coefficient *ρ+ = -0.245), continence (ρ=-0.182), use of clean intermittent catheterization (ρ=0.181) and bowel management (ρ=-0.213), receiving rehabilitative care (ρ=-0.211), household income (ρ=-0.178), geographical region (ρ=-0.203) and having support from another parent in taking care of the child (ρ=-0.234). Linear regression showed parental stress was mostly explained by the child's inability to walk (β=-0.248), practicing bowel management (β=-0.468) and having another adult to provide support in caring for the child (β=-0.228). Parents in northern Uganda had significantly higher scores compared to parents in other regions (Parental Distress, F= 5.467*; Parent-Child Dysfunctional Interaction, F= 8.815**; Difficult Child score, F= 10.489**). In conclusion, parents of children with spina bifida experience high levels of stress. To reduce this stress, rehabilitation services should focus on improving mobility. Advocacy to reduce stigmatization and peer support networks need to be strengthened and developed (8).

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The purpose of this research was to determine 1] the level of family adaptation, as measured by the Family Crisis Oriented Personal Evaluation Scales (F-COPESs) instrument, among persons with a child diagnosed with autism spectrum disorder (ASD) aged 12 years and under, 2] if there was a difference in F-COPES scores based on family demographics, and 3] the time lag between parent's suspicion of ASD and the actual professional diagnosis of ASD. A descriptive survey was used with a convenience sample derived from ASD treatment agencies and a parental support group in the California Bay Area that supports the children and parents of children with special needs. In conclusion, overall, the level of adaptation was within the normal limits with coping scores similar to the norm scores of the F-COPES with males scoring slightly higher than females in the coping scale. Subscale scores of the F-COPES indicated that the parents sought encouragement and support from friends, informal support from other families who faced similar problems, and formal support from agencies and programs. Reframing revealed similar results as the norm with less use of spiritual support, and more passive appraisals were noted from the parents of children with ASD. Within internal comparisons, there were no statistical differences among gender and amount of time a member spent in coordination of services. Comparisons in ethnicity for Caucasians and Asian Americans revealed a higher coping score for reframing in Asian Americans and a higher passive appraisal score among Caucasians. Non-English speakers scored higher on spiritual support, while English speakers scored higher in passive appraisals. Because of insufficient statistical power, comparisons in education, income, marital status, and relocation of residence were deferred. The time from parents' suspicions of developmental delays or disability to a professional diagnosis of ASD was at least 6 months or greater. It is imperative for nurse practitioners (NPs) to provide appropriate professional support and other social support systems to families with children with ASD. Educating parents to sound therapy approaches to provide them with the skills needed to directly address stressful events in order to increase the parent's confidence level as to avoid passive appraisals is also a crucial role of the NP. NPs may want to use the F-COPES as part of the assessment to ascertain the areas of needs of families. The findings reveal the resiliency and highly adaptive nature of these parents who are under severe strain

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and stress of caring for a child with ASD. The effective ways they coped as a family were in the areas of informal and formal social support networks. Participants also used passive appraisal to cope. The study also supports the need for early recognition and diagnoses of ASD and referral for early intervention for better outcomes for the children and families affected by ASD (9). Little is known about the handicapping effect of epilepsy without other neurological deficits on an epileptic individual's life. Therefore, the purpose of this study was to collect information on the occurrence of disabilities and handicaps in an unselected population sample of children, 4-15 years of age, and to compare the results with matched controls. The prevalence of epilepsy in the study population was 0.68% (143/21, 104). Time elapsed from last seizure was at least 1 year in 62.1% of the cases. There was marked neurologic comorbidity in the children with epilepsy; an accessory neurological deficit was found in 39.9%, the most frequent neurological impairments being mental retardation (31.4%), speech disorders (27.5%), and specific learning disorders (23.1%). A handicap was experienced in 20.7% of children with epilepsy only; i.e., with no other neurologic impairments, compared to 0.9% of matched controls. This means a 21.7-fold (95% CI 6.3-74.5) risk of the occurrence of a handicap in children with epilepsy compared to controls. Orientation and social integration handicaps were significantly more frequent in children with epilepsy only compared to controls. Occurrence of communication disability, situational disability, or satisfactory to poor economic status of the family were the independent predictors of the occurrence of a handicap in children with epilepsy only (10). The purpose of this review was to understand the experience of siblings living with a child with Down syndrome (DS) and to identify factors influencing siblings' adaptation. There were both positive and negative consequences associated with being the sibling of a child with DS. Various factors affected siblings' adaptation, but many of these factors were modifiable. An understanding of the modifiable factors can help healthcare providers provide better care and facilitate the development of targeted family/community level interventions. Healthcare providers can also recognize siblings at increased risk for experiencing difficulties adapting and can initiate preventive strategies by understanding nonmodifiable factors (11).

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Twenty one adolescent siblings of children with DS who also had additional health problems rated as requiring extensive care by parents were interviewed. Analysis revealed positive/negative aspects of the experience; however, participants emphasized the positive rather than negative experiences and focused more on the fact that the child had DS rather than health problems requiring additional care. Most said they would not change anything about their experience and did not believe the child with DS would ever live independently. They did, however, acknowledge that their family was affected by the caregiving needs of the child which often required extra vigilance or specific care depending on the health problem. Information gained can help improve understanding of adolescent sibling perceptions about living with a child with DS who also requires additional care because of ongoing health problems so more appropriate and individualized nursing interventions can be provided (12). Parents raising a child with significant developmental challenges are profoundly aware of the often sustained impact of that child's special needs upon their other children. Supported by recent research on siblings of developmentally challenged children, clinicians are advocating family-based interventions that take into account the needs of siblings. The experience of siblings who live with brothers or sisters diagnosed with pervasive developmental disorder or mental retardation is reviewed. Contributions from research on typical siblings are drawn upon when appropriate. Six domains of the sibling experience are identified. These domains explore relational shifts within sibling relationships and through the expectable differential parental treatment of each child. Shifts considered include the interrelationships with the extended family, peers, and friendships, all of which contribute to shaping the meaning that siblings give to living with developmentally challenged brothers or sisters across time (13). The cognitive and language development at 4, 14, 24, 36, 54 months, and 7 years of siblings of children with autism (SIBS-A) were compared to that of siblings of children with typical development (SIBS-TD) using growth curve analyses. At 7 years, 40% of the SIBS-A, compared to 16% of SIBS-TD, were identified with cognitive, language and/or academic difficulties, identified using direct tests and/or parental reports. This sub-group was identified as SIBS-A-broad

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phenotype (BP). Results indicated that early language scores (14-54 months), but not cognitive scores of SIBS-A-BP and SIBS-A-nonBP were significantly lower compared to the language scores of SIBS-TD, and that the rate of development was also significantly different, thus pinpointing language as a major area of difficulty for SIBS-A during the preschool years (14). General emotion expression and sibling-parent emotion communication were examined among Latino and non-Latino white (NLW) siblings of children with intellectual disabilities (ID) and matched comparisons. Totally, 200 siblings (ages 8-15 years) completed the newly developed Sibling-Parent Emotion Communication Scale and existing measures of general emotion expression and psychosocial functioning. Preliminary analyses evaluated scale psychometrics across ethnicity. Structure and internal consistency of the emotion expression and communication measures differed by respondent ethnicity. Latino siblings endorsed more general emotion expression problems and marginally lower sibling-parent emotion communication than NLW siblings. Siblings of children with ID reported marginally more general emotion expression problems than comparisons. Emotion expression problems and lower sibling-parent emotion communication predicted more internalizing and somatic symptoms and poorer personal adjustment, regardless of ID status. Siblings of children with ID endorsed poorer personal adjustment. In conclusion, cultural differences in emotion expression and communication may increase Latino siblings' risk for emotional adjustment difficulties (15). The published research was reviewed from 1980 through 2001 on the psychosocial adjustment of children and adolescents with cystic fibrosis (CF). The inclusion criteria were that research was conducted by nurses and researchers from related disciplines that focused on the psychosocial adjustment of children (6 to 12 years) and/or adolescents (13 to 22 years) with CF. Three computerized databases were used for retrieval: Cumulative Index of Nursing and Allied Health Literature (CINAHL), Medline, and PsycINFO. Of the 74 citations published from 1980 through 2001, only 20 studies met the inclusion criteria, including 7 nursing research studies and 13 studies published by non-nurses in related disciplines. Key findings were the focus of nursing research was on the social consequences of chronic illness, while the non-nursing research focused on self-concept, self-

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worth, and psychiatric symptoms of anxiety, worry, and behavior problems. Only two programs of research were identified. Developmental science was used as a guiding framework for the critique of the research (16). A house-to-house survey, in Ethiopia, was carried out to determine the prevalence of poliomyelitis. During the survey 37,219 households were visited and 17,941 children 5-9 years old were found. Of 231 lame children, lameness compatible with paralytic poliomyelitis was found in 131, of these 91% had their condition before the age of 3 years. Nineteen percent needed a stick support for walking while 12% were unable to walk even with support. This problem was more common in rural populations. The prevalence of paralytic poliomyelitis was 7.3/1,000 children 5-9 years old (17). During March 1988, a house-to-house survey was carried out to determine the prevalence of poliomyelitis in Ilorin Local Government Area (LGA) of Kwara State, Nigeria. The survey identified 4,576 children aged 5 to 9 years old in the households visited from forty randomly selected clusters in the area. Of the 41 lame children, lameness compatible with paralytic poliomyelitis was found in 31, of these 87% had their condition before the age of 3 years. Thirteen percent needed a stick support for walking while 16% were unable to walk even with support. The prevalence rate of residual polio paralysis was 6.8/1000 children 5-9 years old. When all cases of residual paralysis, deaths and recoveries are taken into account, this translates to an incidence of 8.4/1000 children aged 5-9 years old and an annual incidence at 38.3/100,000 general population (18). To estimate the prevalence of residual paralysis from poliomyelitis in children in one area of rural Bangladesh, a survey of the amount and original cause of lameness was undertaken. The International Center for Diarrheal Disease Research, Bangladesh Matlab field area, which has been under demographic surveillance for 13 years, provided the study population of 25,000 children aged 5-14 years. The cause of the lameness identified for a child in the survey was based on criteria obtained from a health history questionnaire and a physical examination performed by a physician. The prevalence rate for residual paralysis of poliomyelitis estimated from the lameness survey was 0.84/1,000 children aged 5-14 years. Since lower extremity paralysis occurs in only about 80% of children with paralytic poliomyelitis, the prevalence rate for all cases of residual

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paralysis of poliomyelitis was calculated to be 1.05/1,000 children in this age group (19). A community house to house survey to estimate the prevalence of paralytic poliomyelitis in children 5-15 years was undertaken from June to August, 1986 in the rural and urban field practice areas. The survey covered 96% and 93% of the houses in the rural and urban areas, respectively. Prevalence of lameness due to poliomyelitis among children aged 5-15 years was 3.5 in the rural and 2.7 in the urban area. Community health examination also confirmed that boys were more vulnerable than girls (20). A large outbreak of poliomyelitis due to poliovirus type 3 (P3) occurred in India in 1999. This raised concern about oral poliovirus vaccine (OPV) effectiveness, particularly the type 3 component, in preventing clinical disease and offered an opportunity to describe the epidemiology of a P3 outbreak. Data collected by the National Polio Surveillance Project were reviewed to describe the outbreak and conducted a case-control study to determine risk factors for the development of paralytic poliomyelitis. The P3 cases with paralysis onset in 2000 were enrolled with four controls per case, matched for age and neighborhood. Of 1,126 virologically confirmed poliomyelitis cases reported in 1999, 719 (64%) were due to P3. Totally, 48 (80%) of 60 cases and 175 matched controls were enrolled. Age (30.6 months, cases versus 30.4 months, controls) and vaccination status (median 5.8 OPV doses, cases versus 6.1 OPV doses, controls) were similar among cases and controls. The only significant difference between the groups was the proportion that received any injection in the last 30 days prior to paralysis onset or the corresponding reference date for controls (35.4% versus 12.3%, adjusted odds ratio 3.9; 95% CI 1.8-12.5). In conclusion, cases and controls had similar vaccination histories. The only significant risk factor for paralytic illness was having received any injection in the 30 days before onset. The findings confirm that injections administered during the poliovirus incubation period can provoke paralytic poliomyelitis. Injections in polio-endemic countries should only be indicated when other therapeutic options have failed or are not available (21). In that they were made in temperate countries, most of the studies on poliomyelitis may not apply in sub-continent of endemic infantile paralysis. This review brings together data on polio in India, to present any changes which may have occurred since 1940. Only

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about 2% of children with polio die in the acute illness; about 95% of all cases have paralysis of one or both legs. In lameness surveys, the adjustments for deaths and for arm paralysis are unnecessary and inflate the prevalence. Surveys suggest that prevalence has risen, but there may be other explanations for the figures. Around sentinel centers with effective cold chains, prevalence has decreased rapidly. The figures of the National Baseline Prevalence survey are examined. There are few cases of provocation, but a new phenomenon of aggravation by unnecessary intramuscular injections given to children with fever has been described. Such unnecessary injections are the cause of more severe paralysis in about 45% of cases and of converting a non-paralytic attack into paralysis in another 30% of the perhaps 200,000 cases in India each year. Aggravation is thought to be caused by a mechanism similar to the effects of physical activity. It is possible that massage might have a similar effect. Abscesses or their treatment may precipitate paralysis. The median age of paralysis fell by almost a half from about 2 years to 1 year, but may now have risen as many younger children receive vaccine. Rehabilitation has been neglected, with long lasting consequences. Assessment of disability should be based on need and not on current ability. Ethically, prevalence surveys should offer opportunity for immunization and rehabilitation. Prevalence of paralysis, numbers attending for rehabilitation and immunization have been analyzed by gender and differences examined. The gender-gap widens with age after paralysis: there may be a high mortality among girls with paralysis. Past prevalence calculated from surveys might be seriously underestimated if many girls have died. The monthly pattern of polio was no different in epidemic years. Pulse immunization could be tried just before the seasonal rise each year. Difficulties of comparing vaccination schedules and the criteria for assessing the potency of vaccine are analyzed. Paralysis among Indian soldiers in World War II suggests that adult cases may occur, but are not reported. Present investigations should concentrate on babies and adult cases. Research using virulent strains should be prohibited. The very low case-fatality rate suggests that many of the circulating viruses are of low virulence. The increasing proportion of cases with unnecessary injections just prior to paralysis might have caused the lower median age of paralysis, the severity of paralysis and at least part of the increasing prevalence of polio. The seasonal increases of polio might,

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in part, be a reflection of the injections given for fever caused by other infections. A national campaign against unnecessary injections for young children is urgently required. For children with fever, there is a strong case for postponing even DPT injections (22). ASSESSMENT: there are numerous diseases associated with child's disability such as CHD, JIA, refractive status and visual function of children with special needs, diabetes, CP, spina bifida, ASD, epilepsy, DS, pervasive developmental disorder or mental retardation, and paralytic poliomyelitis. References 1. Chong LSH, Fitzgerald DA, Craig JC, et al. Children's experiences of congenital heart disease: a systematic review of qualitative studies. Eur J Pediatr. 2018 Jan 11. 2. Saetes S, Hynes L, McGuire BE, Caes L . Family resilience and adaptive coping in children with juvenile idiopathic arthritis: protocol for a systematic review. Syst Rev. 2017;6(1):221. 3. Vora U, Khandekar R, Natrajan S, Al-Hadrami K. Refractive error and visual functions in children with special needs compared with the first grade school students in Oman. Middle East Afr J Ophthalmol. 2010;17(4):297-302. 4. Seppänen S, Kyngäs H, Nikkonen M. Parents' coping with a diabetic child. Hoitotiede. 1997;9(4):169-77. 5. Mu PF. Transition experience of parents caring of children with epilepsy: a phenomenological study. Int J Nurs Stud. 2008; 45(4):543-51. 6. Obladen M. Lame from birth: early concepts of cerebral palsy. J Child Neurol. 2011;26(2):248-56. 7. Raina P, O'Donnell M, Rosenbaum P, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics. 2005;115(6):e626-36. 8. Bannink F, Idro R, van Hove G. Parental stress and support of parents of children with spina bifida in Uganda. Afr J Disabil. 2016;5(1):225. 9. Twoy R, Connolly PM, Novak JM. Coping strategies used by parents of children with autism. J Am Acad Nurse Pract. 2007;19(5):251-60. 10. Sillanpää M. Epilepsy in children: prevalence, disability, and handicap. Epilepsia. 1992;33(3):444-9. 11. Choi H, Van Riper M. Siblings of children with Down syndrome: an integrative review. MCN Am J Matern Child Nurs. 2013;38(2):72-8. 12. Graff C, Mandleco B, Dyches TT, et al. Perspectives of adolescent siblings of children with Down syndrome who have multiple health problems. J Fam Nurs. 2012;18(2):175-99. 13. Schuntermann P. The sibling experience: growing up with a child who has pervasive developmental disorder or mental retardation. Harv Rev Psychiatry. 2007;15(3):93-108.

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14. Gamliel I, Yirmiya N, Jaffe DH, et al. Developmental trajectories in siblings of children with autism: cognition and language from 4 months to 7 years. J Autism Dev Disord. 2009;39(8):1131-44. 15. Long KA, Lobato D, Kao B, et al. Perceptions of emotion expression and sibling-parent emotion communication in Latino and non-Latino white siblings of children with intellectual disabilities. J Pediatr Psychol. 2013;38(5):551-62. 16. Christian B. Growing up with chronic illness: psychosocial adjustment of children and adolescents with cystic fibrosis. Annu Rev Nurs Res. 2003;21:151-72. 17. Maru M, Getahun A, Hoshna S. Prevalence of paralytic poliomyelitis in rural and urban populations in Ethiopia: report of a house-to-house survey. Am J Trop Med Hyg. 1988;38(3):633-5. 18. Parakoyi B, Babaniyi OA. Prevalence of paralytic poliomyelitis in children of Kwara State, Nigeria: report of a house-to-house survey. East Afr Med J. 1990;67(8):545-9. 19. Snyder JD, Black RE, Baqui AH, Sarder AM. Prevalence of residual paralysis from paralytic poliomyelitis in a rural population of Bangladesh. Am J Trop Med Hyg. 1981;30(2):426-30. 20. Mehra M, Bansal Y. Prevalence of paralytic poliomyelitis in a rural and urban community of Delhi. Indian Pediatr. 1990;27(9):915-7. 21. Kohler KA, Hlady WG, Banerjee K, Sutter RW. Outbreak of poliomyelitis due to type 3 poliovirus, northern India, 1999-2000: injections a major contributing factor. Int J Epidemiol. 2003;32(2): 272-7. 22. Wyatt HV. Poliomyelitis in India: past, present and future. Indian J Pediatr. 1998;65(1 Suppl):SI-VIII, S1-98.

SEXUAL ABUSE Children without disabilities in out-of-home care have a higher risk of child sexual abuse (CSA) (1). The year prevalence of CSA was examined in out-of-home care for children with a mild intellectual disability (ID), and compared it with the prevalence in out-of-home care for non-disabled children and children in the general population. Professionals (n=104) from out-of-home care facilities reported cases of CSA that occurred in 2010 for the children they worked with (n=1650). In out-of-home care for children with a mild ID, 9.8 per 1000 children were victims of CSA. This prevalence was significantly higher than in regular out-of-home care and in the general population. In conclusion, children with a mild ID in out-of-home care have an increased risk of CSA. Adequate education and support for both children and caregivers is necessary to recognize and prevent further sexual abuse (2).

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A narrative review of the literature on sexual abuse, involving children with ID was provided. The thirteen articles that were found and met the criteria vary in their definitions of sexual abuse and in how ID was determined. Still, they do paint a general picture concerning 1] the extent of sexual abuse, 2] the nature of the sexual abuse, and 3] the institutional reactions following sexual abuse of children with ID. The findings confirm the greater vulnerability of children with ID to become involved in sexual abuse both as a victim and as a perpetrator, and ways are discussed to help strengthening prevention and intervention methods. Nevertheless, more research is needed, as it is still a rather unexplored topic, which is striking in light of the high vulnerability of this group (3). Sexually abused children and adolescents, with and without ID, in terms of post-abuse psychiatric disorders, features of the sexual abuse, and sociodemographic characteristics were compared. Sexually abused children aged 6-16 years were sent to three different child mental health units for forensic evaluation; there were 102 cases (69 girls and 33 boys) with ID and 154 cases (126 girls and 28 boys) without ID. Researchers retrospectively examined the files, social examination reports, and the judicial reports of the cases. In the group with ID, sexual abuse types including penetration and contact had higher rates, they were exposed to more frequent repeated abuses, the abuses were revealed with their own reports at a later period and lower rates, and post-abuse pregnancies were more frequent. The abuser was a familiar person and a family member at lower rates and more than one abuser was encountered more frequently, compared to the group without ID. While no difference was determined between the two groups in terms of the frequency of post-abuse post-traumatic stress disorder (PTSD), major depressive disorder, and conduct disorder was observed more frequently in the group with ID. The findings emphasize that sexual abuse, which is an important problem in individuals with ID, has different features and effects (4). The occurrence of victimization and the perpetration of sexual abuse were examined among 43 in-patients with ID aged between 9 and 21 years who were admitted to a child and adolescent psychiatric in-patient department over a period of 5 years. A retrospective case-note review was used to examine the nature and severity of abuse in relation to the age, gender and level of disability.

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The prevalence of abuse or abusive behavior, i.e. 14% of 300 admissions, did not change over time. In 13 out of the 43 cases, the issue of sexual abuse was identified after admission. Victimization alone occurred in 21 cases, perpetration alone in six cases, and both victimization and perpetration in 16 cases. Fifty per cent of the victims had been abused by a member of their close or extended family. Most cases (62%) were adolescents. There was only one instance of a victim being abused by a female. However, there were five girls who were perpetrators, all of whom had previously been victims. By contrast, 11 out of the 17 male perpetrators had been victims. Despite difficulties of disclosure, it was possible to establish that severely disabled patients had suffered sexual abuse. The present data support theories which recognize gender differences in sexual abuse patterns and have a developmental perspective, incorporating the influence of adolescence (5). Two issues were addressed using a sample of child and adolescent victims and perpetrators of sexual abuse: 1] the extent of PTSD in the sample; and 2] the possible distinction between perpetrators whose motivations were sexually impulsive, and those who were controlling and abuse-reactive. Retrospective case material from 43 cases, 21 victims only, and 22 perpetrators, of whom 16 were also victims, provided the data. Post-traumatic symptomatology was not common. Only one case of PTSD was found. Perpetrators could be distinguished by whether they had suffered sexual abuse alone, sexual and physical abuse, or neither. The proposed distinction between perpetrators received support. Sexual abuse directed at younger victims was associated with earlier experience of multiple forms of abuse. The findings do not support the view that posttraumatic symptoms following victimization are a mediator of sexual abuse perpetration (6). ASSESSMENT: children with a mild intellectual disability in out-ofhome care have an increased risk of CSA. There is the greater vulnerability of children with ID to become involved in sexual abuse both as a victim and as a perpetrator. In the group with ID, sexual abuse types including penetration and contact have higher rates, they are exposed to more frequent repeated abuses, the abuses are revealed with their own reports at a

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later period and lower rates, and post-abuse pregnancies are more frequent. Post-traumatic symptoms following victimization do not represent a mediator of sexual abuse perpetration. References 1. Euser S, Alink LR, Tharner A, et al. The prevalence of child sexual abuse in out-of-home care: a comparison between abuse in residential and in foster care. Child Maltreat. 2013;18(4):221-31. 2. Euser S, Alink LR, Tharner A, et al. The prevalence of child sexual abuse in out-of-home care: increased risk for children with a mild intellectual disability. J Appl Res Intellect Disabil. 2016;29(1):83-92. 3. Wissink IB, van Vugt E, Moonen X , et al. Sexual abuse involving children with an intellectual disability (ID): a narrative review. Res Dev Disabil. 2015;36:2035. 4. Soylu N, Alpaslan AH, Ayaz M, et al. Psychiatric disorders and characteristics of abuse in sexually abused children and adolescents with and without intellectual disabilities. Res Dev Disabil. 2013; 34(12):4334-42. 5. Balogh R, Bretherton K, Whibley S, et al. Sexual abuse in children and adolescents with intellectual disability. J Intellect Disabil Res. 2001;45(Pt 3):194201. 6. Firth H, Balogh R, Berney T, et al. Psychopathology of sexual abuse in young people with intellectual disability. J Intellect Disabil Res. 2001;45(Pt 3):244-52.

IMPACT ON PARENTS Care for a child with a disability is a stressful experience for parents. It triggers a range of emotions and feelings that require a set of behaviors and attitudes to manage daily life. To face this situation, parents use coping strategies. The psychological reactions (depression and anxiety) of parents and the impact of a child's disability on their quality of life (QOL) were assessed, and their coping strategies were determined. A survey of 50 parents of handicapped children, treated in the neurology department at the Sfax Teaching Hospital in Tunisia, was conducted in September 2010. The Beck Depression Inventory (BDI), the State Trait Anxiety Inventory (STAI), the SF-36, and the Brief COPE were used to assess, respectively, depression, anxiety, QOL, and coping strategies in parents. Among the group of parents studied, the anxiety and depression rates were, respectively, 68% and 52%. Depression was

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more frequent among mothers and was correlated with low educational and socioeconomic levels. Anxiety was found in 70.7% of mothers and 55.6% of fathers with insignificant correlation. There was a correlation between anxiety and increased family burden related to the presence of a similar case in the family. The range of coping strategies used includes religion (16%), active coping (16%), planning (16%), acceptance (20%), focus and venting of feelings (10%), and seeking emotional social support (10%). Parents used emotion-focused coping in 68% of cases and problem-centered coping in 32% of cases. The coping strategy choice was significantly correlated with gender. Mothers preferentially used emotionfocused coping. Depressed or anxious parents more frequently used emotion-focused strategies. The length of follow-up (more than 2 years) was correlated with a strategy focused on acceptance. Emotion-focused coping was also correlated with low levels of education and socioeconomic status. Correlations were found between depression and different types of emotion-focused coping such as emotional support. Impaired QOL was higher among mothers (58.5% versus 33.3%). It was correlated with depression, anxiety, and the use of emotional coping. Also, it was correlated with low educational and socioeconomic levels and increased family burden related to the presence of a similar case in the family. The size most commonly impaired in mothers was limited due to mental health (56.9% versus 44.4% for fathers). Social functioning was significantly correlated with the presence of a mental disability, the functional dependence of the child, and increased family burden related to the presence of a similar case in the family. Impaired QOL was found in 66.8% of parents dissatisfied with the explanations given by the medical team. More problem-focused coping was found in parents satisfied with the information given by the medical team compared to those inadequately informed (42.1% versus 25.8%). The presence of a disabled child causes profound changes in the family. The impact of anxiety and depression on parents and on their QOL was considerable. This is a situation that involved an adaptation process. At first, parents may be tempted to use coping strategies focused on religion, a choice related to Arab-Muslim fatalism. Parents should be encouraged to use active coping strategies to support their disabled child better. In addition, adequate information given by the healthcare staff would help them

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to deal with the child's handicap and would contribute to improving their QOL (1). Research was conducted, within the framework of the International Family Quality of Life Project, on the QOL of families with a member who has a disability. The nine specific domains that the family life measure used, and recorded data from five of its six measurement dimensions: Importance, Opportunities, Initiative, Attainment and Satisfaction were evaluated. The sample consisted of 20 families from Slovenia with children who have intellectual or developmental disabilities. The data were collected using the Family Quality of Life Survey-2006. Except for Community Interaction, the other domains (Health, Financial Well-Being, Family Relations, Support from Others, Support Services, Influence of Values, Careers, Leisure and Recreation) show statistically significant differences among the five dimensions measured. Importance was rated highest, and Attainment and Opportunities were rated lowest, while Initiative and Satisfaction were evaluated lower than Importance but higher than Attainment and Opportunities. Among the domains of family life, Family Relations was the highest from the perspective of all five dimensions. In conclusion, the family members rated Importance high for all of the quality of family life domains, but it appeared from the lower Opportunities scores that their opportunities were limited; this may result in fewer possibilities for attaining a better QOL. The results of the research are useful to Slovene researchers who work in the areas of special pedagogy and rehabilitation, non-governmental organizations and social services. The QOL of families with children with disabilities, their empowerment and their inclusion into community life should be significantly enhanced when consideration is given to all the family members' support and service needs (2). This qualitative clinical study investigated the impact of moderate intellectual disability on family dynamics and QOL. The data were collected using individual interviews with 15 mothers of children with intellectual disabilities (IDs), as a convenience sample, and with categorical thematic content analysis was examined. The results were discussed using a comprehensive and interpretative approach. Analysis of the interviews showed that care for children with IDs is centered on the mother, contributing to the change in family relations. Religious coping appeared as a common strategy for adjusting. Children with IDs had less access to services and support

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than they needed in the areas of health, education, and leisure. Financial constraints and difficulties in community living had a negative impact on the family QOL. Emotional and psychological support for all the family members, and practical and social support, including income distribution and access to adequate services, proved essential for the well-being of children with IDs and their families (3). ASSESSMENT: care for a child with a disability is a stressful experience for parents. It triggers a range of emotions and feelings that require a set of behaviors and attitudes to manage daily life. The presence of a disabled child causes profound changes in the family. The impact of anxiety and depression on parents and on their QOL is considerable. Among the domains of family life, family relations are the highest from the perspective of all five dimensions. Family members rate Importance as high for all of the quality of family life domains. References 1. Ben Thabet J, Sallemi R, Hasïri I, et al. Psycho-emotional impact of a child's disability on parents. Arch Pediatr. 2013;20(1):9-16. 2. Cagran B, Schmidt M, Brown I. Assessment of the quality of life in families with children who have intellectual and developmental disabilities in Slovenia. J Intellect Disabil Res. 2011;55(12):1164-75. 3. Tomaz RVV, Santos VA, Silva de Avó LRD, et al. Impact of moderate intellectual disability on the dynamics and quality of family life: a qualitative clinical study. Cad Saude Publica. 2017; 33(11):e00096016.

FAMILY ADJUSTMENT/ADAPTATION The Family Impact of Childhood Disability Scale (FICD) was developed to assess subjective interpretation or "primary appraisal" of parents regarding the impact of a child with developmental disabilities on the family. A random sample of 87 families was assessed while children with developmental disabilities were in the preschool years. After 7 years had elapsed, 64 of these families were interviewed again when the children were in the preteen years. A set of standardized self-report measures provided mother and father views of child, parent, and family functioning. The FICD

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demonstrated adequate internal consistency, with some evidence of discriminant and predictive validity. The FICD total score, based on the discrepancy between positive and negative subscale scores, was a significant predictor of future parenting stress of mothers and of fathers, even when controlling for other important explanatory variables such as marital adjustment and level of disability in a child. In conclusion, the 15-item FICD offers a brief assessment of both positive and negative parent appraisals, with a total discrepancy score that predicts long-term parenting stress (1). Little is known about the adaptive process and experiences of parents raising a child with an undiagnosed medical condition. Therefore, the present study aims to assess how uncertainty, hope, social support, and coping efficacy contribute to adaptation among parents of children with an undiagnosed medical condition. Sixtytwo parents of child affected by an undiagnosed medical condition for at least two years completed an electronically self-administered survey. Descriptive analysis suggested parents in this population had significantly lower adaptation scores when compared to other parents of children with undiagnosed medical conditions, and parents of children with a diagnosed intellectual and/or physical disability. Similarly, parents had significantly lower hope, perceived social support and coping efficacy when compared to parents of children with a diagnosed medical condition. Positive stress response was negatively associated with emotional support (B=-0.045, p≤0.05) and positively with coping efficacy (B=0.009, p≤0.05). Adaptive selfesteem was negatively associated with uncertainty towards one's social support (B=-0.248, p≤0.05) and positively with coping efficacy (B=0.007, p≤0.05). Adaptive social integration was negatively associated with uncertainty towards one's social support (B-0.273, p≤0.05) and positively with uncertainty towards child's health (B=0.323, p≤0.001) and affectionate support (B=0.110, p≤0.001). Adaptive spiritual wellbeing was negatively associated with uncertainty towards one's family (B=-0.221, p≤0.05). Findings have highlighted the areas where parents believed additional support was required, and provided insight into factors that contribute to parental adaptation (2). Living with a disabled child has profound effects on the entire family. With a prevalence of developmental disabilities around 2,5%, there is a considerable need to promote improvements in the health

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care system. Little is known about changes and adaptations in the lives of affected families and this paucity of information hinders the improvement of services. The needs and changes in the everyday life of families with children suffering from rare diseases of varying severity, with and without mental disability were investigated. The socio-demographic characteristics, health care problems and living conditions of a large cohort of families with an affected member were measured. A sample of 154 families was recruited between September 2011 and April 2013 to respond to a 136 item questionnaire that explored different areas of concern, diagnosis and follow-up of clinical specialists, relationship with pediatrician, rehabilitation, school, work, institutional and/or private support, child care needs and family relationships. All parents answered the questionnaire. They were satisfied with the services provided in particular for diagnosis and follow-up, relationships with the family pediatrician, rehabilitation services and school, regardless of the severity of condition, presence of intellectual disability (ID) or absence of diagnosis. Negative scores were reported for institutional and/or private support and family relationships in severe conditions. In conclusion, the Health Care System should maintain a familycentered care and a multi-agency working, improving quality of life (QOL) of families with disabled child to allow adaptation. These services are uncoordinated and financial support is poor, resulting in a heavy burden for these families (3). The concurrent and longitudinal effects of children's disability types and health on family experiences, namely, parent divorce, mother's unemployment, and receipt of social welfare were examined. The parent and school staff survey data for 1999 and 2004 from the Special Education Elementary Longitudinal Study were analyzed, when the ages of children with disabilities ranged from 6 to 17. Family experiences varied significantly by disability type in 1999. Compared with families of children with learning disabilities, parents of children with emotional disturbances were 81% more likely to get divorced, and 2.5 times more likely to receive welfare from 1999 to 2004. Mothers of children with a secondary disability were 81% more likely to be unemployed than those of children without a secondary disability. These findings indicate that specific disability types in children have an influence on family experience, and that some of those influences may persist over time. Families of children

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with emotional disturbances appear to be particularly at risk for negative family experiences. Clinicians, educators, and policymakers should be aware of the complex needs of families of children with disabilities when considering the types of services and supports provided to both children with disabilities and their families (4). This is the first of three articles which consider the holistic care required by children with a disability and their families. Although the articles mainly address care of children with disabilities in the acute hospital setting, the concepts and knowledge can be transferred to care in other settings. A summary of the main subject areas was provided while prompting readers to revisit their own opinions and experiences (5). This second part of a series of three articles examines the relationship between children and young people with disabilities, their families and professionals by discussing the concept of 'therapeutic use of self'. The core skills that support this therapeutic intervention are: understanding the self and how we deal with our own emotions; managing our attitudes and beliefs; entering the experience of others (empathy); using reflective techniques to develop sensitivity; listening, speaking, supportive and counseling skills (6). This is the final article in a series of three that have highlighted the complexities of caring for a child with a disability. The third part addresses the range of care that a child with disabilities requires and how the child's needs can be met in the ward setting. The importance of multi-disciplinary working in providing holistic care is also considered (7). When parents receive a diagnosis that their child is disabled, many families adjust to this healthily and cope well, but others do not. Feelings of hopelessness, social isolation of the family within the community and child behavior problems have all been reported. While utilization of social support systems is well documented in the literature as being a significant factor in family coping and adjustment to the child's disability, less attention has been focused on the role of psychological factors. Therefore, this imbalance was addressed by integrating perspectives from a social model of disability with psychological research on the role of cognitive change in families' coping and adjustment to having a disabled child, and thus to produce a new psychosocial model of disability-related child

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behavior problems. Negative societal attitudes to disability identified by a social model of disability are interpreted with respect to how they might translate to parent views of their disabled child within the family. Resultant parenting beliefs and their possible implications for family interaction, child behavior and family health and well-being are explored within this new framework. In conclusion, the psychosocial model of disability-related child behavior problems provides a useful conceptual framework that has both clinical and research implications for professionals working with families with disabled children (8). There are growing numbers of older parents providing ongoing care for adults with disabilities. A parent's aging calls for a redefinition of parental care practices and roles in light of his or her own changing needs. The ways in which aging parents perceive and construct their parental role to adult children with disabilities were highlighted at this point in their lives. An interpretive phenomenological analysis perspective was used. Data collection was performed through in-depth, semistructured interviews with 20 aging parents of children with developmental disabilities, followed by a content analysis. Four patterns of parental identity emerged: "Being happy is his responsibility; I did my part," embracing aging needs; "I can do part-time worrying," a gradual letting go of parental roles; "I'm worn out, but I keep going. What choice do I have?" bearing the brunt; "I'm an old woman changing diapers," full-time parents. In conclusion, the findings enable a deeper understanding of the various ways in which parents cope with aging alongside caring for an adult child with disability. Hence, this study can serve as a framework for developing tailored and differential intervention methods for these families. As the world's people experience longer life expectancy, of both individuals with disabilities and their parents, nurses' education and practice should be challenged by the double sensitivities of elder's caregiving and address the needs of this population (9). This study was designed to contribute to the existing research on the coping behaviors, social support, and mental health outcomes in parents of children with epilepsy in the U.S. Participants included 152, predominantly Caucasian (89.5%), married (78.9%) women (95.4%). Via a web-based interface, mothers completed questionnaires assessing the impact of their child's disability on their

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family (i.e., severity of their child's disability, family burden, and personal stress), social resources (i.e., perceived social support), coping (i.e., emotion-focused and social support seeking), and adjustment (i.e., depression and anxiety). After controlling for demographic variables, mediational analysis revealed that mothers' perceptions of the severity of their child's disability were associated with decreased perceived social support, which was then related to higher reported levels of depression and anxiety. Similarly, low levels of perceived social support partially mediated the relation between family burden and depression, anxiety, and stress. Mothers' perceptions of the severity of their children's disability and family burden were unrelated to their reports of emotion-focused or social support seeking coping. However, their use of emotion-focused and social support seeking behaviors was related to lower levels of depression. In conclusion, low levels of perceived social support may help to explain the mechanisms underlying the relation between mothers' perceptions of the severity of their child's disability and family burden on their mental health adjustment, such as depression and anxiety (10). This study assesses well-being and supportive resources experienced by mothers and fathers of children with rare disabilities, and how these variables were affected by an intensive family competence intervention. Despite diagnosis-specific studies, little overall knowledge exists about life-consequences for families of children with rare disorders. A prospective design with baseline data and two follow-ups (at 6 and 12 months) after an intervention were used. The intervention aimed at empowering parents in managing their child's disability. Parents from all parts of Sweden visiting a national center for families of children with rare disabilities were consecutively selected (n=136 mothers, 108 fathers). Instruments of parental stress, social support, self-rated health, optimism and life satisfaction and perceived physical or psychological strain were used. Stratified analyses were carried out for mothers and fathers, and related to parental demands: single mothers, full-time employment, and participation in a parent association, child's age and type of disability. High parental stress, physical and emotional strain among mothers, especially among single mothers was found. Fathers showed high stress related to incompetence, which decreased after the intervention. Decreased strain was found among full-time

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working mothers and fathers after the intervention. Parents' perceived knowledge and active coping and mothers' perceived social support were increased at follow-up. Factors related to parents' overall life satisfaction (57-70% explained variance) changed after the intervention, from being more related to internal demands (perceived strain, incompetence and social isolation) to other conditions, such as problems related to spouse, paid work and social network. In conclusion, parents, especially fathers and full-time working parents may benefit from an intensive family competence program (11). This Monograph presents the results of a non-experimental, longitudinal investigation of developmental change in 190 infants and their families after 1 year of early intervention services. The Early Intervention Collaborative Study (EICS), conducted in association with 29 community-based programs in Massachusetts and New Hampshire, was designed to assess correlates of adaptation in young children with disabilities and their families over time, to inform social policy by analyzing the influences of family ecology and formal services on child and family outcomes, and to generate conceptual models to guide further investigation. The sample (mean age at entry = 10.6 months) included 54 children with Down syndrome, 77 with motor impairment, and 59 with developmental delays of uncertain etiology. Data were collected during two home visits (within 6 weeks of program entry and 12 months later) and included formal child assessments, observations of mother-child interaction, maternal interviews, and questionnaires completed independently by both parents as well as monthly service data collected from service providers. Child and family functioning varied considerably. Developmental change in the children (psychomotor abilities, adaptive behavior, spontaneous play, and child-mother interaction skills) was influenced to some extent by gestational age and health characteristics, but the strongest predictor of change was the relative severity of the child's psychomotor impairment at study entry. Families demonstrated generally positive and stable adaptation (in terms of the effect of rearing a child with disabilities on the family, parenting stress, and social support), despite persistent challenges with respect to mother-child interaction and differences in reported stress between mothers and fathers. Documentation of services revealed that early intervention is a complex and multidimensional

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experience that spans multiple public and private systems. Vulnerable and resilient subgroups within the sample were identified, and different correlates of adaptive change were demonstrated. Results of data analyses suggested new perspectives on the study of early childhood disability (12). Children with developmental delays (DD) are at risk for developing behavior problems. Research suggests that parents' causal attributions for child behavior are related to parenting. This association was investigated in parents of children with DD compared to parents of typically developing (TD) children. It specifically focused on attributions of child control by separating these from attributions of responsibility, blame and intent, and from attributions of parent control and responsibility. Fifty-one parents of children with DD and 69 parents of TD children completed two questionnaires. The Written Analogue Questionnaire measured causal attributions. The Parenting Scale measured dysfunctional discipline practices. Parents of children with DD viewed the child's role in problematic behavior more positively while also viewing misbehavior as more fixed than parents of TD children. Parents of TD children who viewed their child as more in control over misbehavior used less dysfunctional discipline, but this association was not found for parents of children with DD. The results advance understanding of how parents perceive behavior problems in children with DD and the important role these perceptions play in parental behavior management strategies. Importantly, these perceptions relate to discipline practices differently for parents of children with DD compared to parents of TD children, highlighting that parent interventions should be adapted to the specific needs of parents of children with DD (13). Children with IDs have high rates of behavior problems. Parents' causal beliefs and attributions for general problematic child behavior were investigated in children with different etiologies of intellectual disabilities (IDs). Ten parents of children with IDs participated in interviews about their child's problematic behavior. Thematic analysis using NVivo revealed that parents viewed their child's problematic behavior not only as caused by the child's IDs but also by other causes unrelated to the IDs, as well as by aspects of the social environmental context. Some causes were viewed as stable and uncontrollable and others as unstable and controllable. Parents

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showed a strong sense of responsibility for child behavior. In conclusion, parents of children with IDs do not solely interpret their child's problematic behavior through the IDs but incorporate the environment and causes and attributions that are not related to the IDs, which may help to promote more effective parenting (14). Living with a child with a long-term condition can result in challenges above usual parenting because of illness-specific demands. A critical evaluation of research infestation parents' experiences of living with a child with a long-term condition is timely because international health policy advocates that patients with long-term conditions become active collaborators in care decisions. A rapid structured review was undertaken (January 1999-December 2009) in accordance with the United Kingdom Centre for Reviews and Dissemination guidance. Three data bases (MEDLINE, CINAHL, PSYCINFO) were searched and also hand searching of the Journal of Advanced Nursing and Child: Care, Health and Development. Primary research studies written in English language describing parents' experiences of living with a child with a long-term condition were included. Thematic analysis underpinned data synthesis. Quality appraisal involved assessing each study against predetermined criteria. Thirty-four studies met the inclusion criteria. The impact of living with a child with a long-term condition related to dealing with immediate concerns following the child's diagnosis and responding to the challenges of integrating the child's needs into family life. Parents' perceived they are not always supported in their quest for information and forming effective relationships with health-care professionals can be stressful. Although having ultimate responsibility for their child's health can be overwhelming, parents developed considerable expertise in managing their child's condition. In conclusion, parents' accounts suggest they not always supported in their role as manager for their child's long-term condition and their expertise, and contribution to care is not always valued (15). A diagnosis of a long-term illness in a child will bring on a major upheaval in the lives of the whole family involved and leads to a longstanding relationship with health care personnel. Parents' experiences with their child's illness were evaluated and treatment and with their relationships with health professionals was investigated during the process of learning to care for their child. Data were collected by conducting open-ended interviews with

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parents (n=11) whose child had been diagnosed with a physical longterm illness at least 1 year previously and were analyzed using qualitative content analysis. Parents' needs for information and support varied and consisted of different components in different phases of the process. During the diagnostic phase, parents were recipients of information; it was important for them to receive consistent empathetically provided information. In the next phase, parents, having gained experience of day-to-day home care, engaged in a change toward a two-way flow of information with the professionals; mutual trust was essential for the exchange of information needed for a child's proper care. Without a permanent relationship with health professionals, parents showed lack of trust in professionals' knowledge of their child's condition and care. Professionals' lack of trust in parents' expertise in their child's care was also problematic. Health professionals should lay the groundwork for a partnership in which both parties acknowledge each other's competencies; parents' needs ought to be continuously reassessed. A permanent relationship between families and health care personnel is required to achieve this (16). Information provision is a prerequisite for partnership between child patients, their parents and health professionals. The complexity of parents' information needs was investigated and how current information provision is evaluated. Qualitative methodology using semi-structured interviews with 27 parents of 20 families with a chronically ill child, recruited at the pediatric department of a British district general hospital. The need for information varied greatly between individuals and over time, and commonly involved diagnosis, management plan and prognosis. However, most parents experienced professional communication and information provision to be inadequate. Information provision appeared to be related to the diagnosis, the level of secondary care involvement and the extent to which parents were required to take responsibility for daily management of the child's condition. Parents' complex and shifting evaluations and responses point to the double-edged nature of information. Some parents actively sought out information, but resisting information, for fear of its potentially negative impact, was also noted to be a coping strategy. In conclusion, parents of chronically ill children presented with a great variety of information needs, which was not always appreciated by healthcare

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professionals. The findings highlight the need for good communication based on professional awareness of how parents understand and experience their child's illness, as well as the importance of sensitively individualizing information provision to parents' needs so as to address their requirements but not to unnecessarily increase their anxiety or insecurity (17). The concurrent and longitudinal effects of children's disability types and health on family experiences, namely, parent divorce, mother's unemployment, and receipt of social welfare were examined. The parent and school staff survey data for 1999 and 2004 from the Special Education Elementary Longitudinal Study were analyzed, when the ages of children with disabilities ranged from 6 to 17 years. Family experiences varied significantly by disability type in 1999. Compared with families of children with learning disabilities, parents of children with emotional disturbances were 81% more likely to get divorced, and 2.5 times more likely to receive welfare from 1999 to 2004. Mothers of children with a secondary disability were 81% more likely to be unemployed than those of children without a secondary disability. These findings indicate that specific disability types in children have an influence on family experience, and some of those influences may persist over time. Families of children with emotional disturbances appear to be particularly at risk for negative family experiences. Clinicians, educators, and policymakers should be aware of the needs of families of children with disabilities when considering the types of services and supports provided to both children with disabilities and their families (18). One in ten U.S. adults of childbearing age has limited English proficiency (LEP). Parental LEP is associated with worse health outcomes among healthy children. A review of peer-reviewed literature was conducted to examine relationships between parental LEP and health outcomes for children with special health care needs (CSHCN). Data sources PubMed, Scopus, Cochrane Library, Social Science Abstracts, bibliographies of included studies. Key search term categories: language, child, special health care needs, and health outcomes. U.S. studies published between 1964 and 2012 were included if: 1] subjects were CSHCN; 2] studies included some measure of parental LEP; 3] at least 1 outcome measure of child health status, access, utilization, costs, or quality; and 4] primary or secondary data analysis. Three trained reviewers independently

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screened studies and extracted data. Two separate reviewers appraised studies for methodological rigor and quality. From 2,765 titles and abstracts, 31 studies met eligibility criteria. Five studies assessed child health status, 12 assessed accesses, 8 assessed utilization, 2 assessed costs, and 14 assessed quality. Nearly all (29 of 31) studies used only parent- or child-reported outcome measures, rather than objective measures. LEP parents were substantially more likely than English-proficient parents to report that their CSHCN were uninsured and had no usual source of care or medical home. LEP parents were also less likely to report family-centered care and satisfaction with care. Disparities persisted for children with LEP parents after adjustment for ethnicity and socioeconomic status. In conclusion, parental LEP is independently associated with worse health care access and quality for CSHCN. Health care providers should recognize LEP as an independent risk factor for poor health outcomes among CSHCN. Emerging models of chronic disease care should integrate and evaluate interventions that target access and quality disparities for LEP families (19). ASSESSMENT: specific disability types in children influence family experience, and some of those influences may persist over time. Positive stress response is negatively associated with emotional support and positively with coping efficacy. Adaptive self-esteem is negatively associated with uncertainty towards one's social support and positively with coping efficacy. The Health Care System should maintain a family-centered care and a multi-agency working, improving QOL of families with disabled child to allow adaptation. When parents receive a diagnosis that their child is disabled, many families adjust to this healthily and cope well, but others do not. Feelings of hopelessness, social isolation of the family within the community and child behavior problems have all been reported. The psychosocial model of disability-related child behavior problems provides a useful conceptual framework that has both clinical and research implications for professionals working with families with disabled children. Parents' accounts suggest they are not always supported in their role as manager for their child's long-term condition and their expertise, and contribution to care is not always valued.

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Families of children with emotional disturbances are particularly at risk for negative family experiences. References 1. Trute B, Hiebert-Murphy D. Family adjustment to childhood developmental disability: a measure of parent appraisal of family impacts. J Pediatr Psychol. 2002;27(3):271-80. 2. Yanes T, Humphreys L, McInerney-Leo A, Biesecker B. Factors associated with parental adaptation to children with an undiagnosed medical condition. J Genet Couns. 2017;26(4):829-40. 3. Silibello G, Vizziello P, Gallucci M , et al. Daily life changes and adaptations investigated in 154 families with a child suffering from a rare disability at a public centre for rare diseases in Northern Italy. Ital J Pediatr. 2016;42(1):76. 4. Wei X, Yu J. The concurrent and longitudinal effects of child disability types and health on family experiences. Matern Child Health J. 2012;16(1):100-8. 5. Thurgate C, Warner H. Living with disability: Part 1. Paediatr Nurs. 2005; 17(10):37-44. 6. Warner H. 6. Warner H. Living with disability: part 2. The child/family/nurse relationship. Paediatr Nurs. 2006;18(2):38-43; quiz 44. 7. Thurgate C. Living with disability: Part 3. Communication and care. Paediatr Nurs. 2006;18(5):40-4. 8. Woolfson L. Family well-being and disabled children: a psychosocial model of disability-related child behaviour problems. Br J Health Psychol. 2004;9(Pt 1):113. 9. Band-Winterstein T, Avieli H. The experience of parenting a child with disability in old age. J Nurs Scholarsh. 2017;49(4):421-8. 10. Carlson JM, Miller PA. Family burden, child disability, and the adjustment of mothers caring for children with epilepsy: role of social support and coping. Epilepsy Behav. 2017;68:168-73. 11. Dellve L, Samuelsson L, Tallborn A, et al. Stress and well-being among parents of children with rare diseases: a prospective intervention study. J Adv Nurs. 2006;53(4):392-402. 12. Shonkoff JP, Hauser-Cram P, Krauss MW, Upshur CC. Development of infants with disabilities and their families: implications for theory and service delivery. Monogr Soc Res Child Dev. 1992;57(6):v-vi, 1-153. 13. Jacobs M, Marks Woolfson L, Hunter SC. Parental attributions of control for child behaviour and their relation to discipline practices in parents of children with and without developmental delays. J Child Fam Stud. 2017;26(6):1713-22. 14. Jacobs M, Woolfson LM, Hunter SC . Attributions of stability, control and responsibility: how parents of children with intellectual disabilities view their child's problematic behaviour and its causes. J Appl Res Intellect Disabil. 2016; 29(1):58-70. 15. Smith J, Cheater F, Bekker H. Parents' experiences of living with a child with a long-term condition: a rapid structured review of the literature. Health Expect. 2015;18(4):452-74. 16. Nuutila L, Salanterä S. Children with a long-term illness: parents' experiences of care. J Pediatr Nurs. 2006;21(2):153-60.

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17. Hummelinck A, Pollock K. Parents' information needs about the treatment of their chronically ill child: a qualitative study. Patient Educ Couns. 2006; 62(2):228-34. 18. Wei X, Yu JW. The concurrent and longitudinal effects of child disability types and health on family experiences. Matern Child Health J. 2012;16(1):100-8. 19. Eneriz-Wiemer M, Sanders LM, Barr DA, Mendoza FS. Parental limited English proficiency and health outcomes for children with special health care needs: a systematic review. Acad Pediatr. 2014;14(2):128-36.

UNINTENTIONAL INJURIES In the Bible, Mephiboshet in a hasty fleeing unintentionally fell that caused him to be a disabled child. Is a child fall prevalent in contemporary times? What are consequences of such falls? The epidemiology of tree house-related injuries in the U.S. was described among children and adolescents. A retrospective analysis was conducted using data from the National Electronic Injury Surveillance System for patients ≤19 years who were treated in an emergency department (ED) for a tree house-related injury from 1990 through 2006. Estimated 47,351 patients ≤19 years of age were treated in EDs for tree house-related injuries over the 17-year study period. Fractures were the most common diagnosis (36.6%), and the upper extremities were the most commonly injured body part (38.8%). The odds of sustaining a head injury were increased for children aged 17,300 children from Guatemala. The health, growth, and developmental status of 103 Guatemalan adopted children (48 girls; 55 boys) were assessed after arrival in the U.S. Physical evidence suggestive of prenatal alcohol exposure and adequacy of vaccinations administered were also reviewed. Retrospective chart review was conducted of 103 children who were evaluated after arrival in the U.S. in an international adoption specialty clinic, and a case-matched study was

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conducted of a subgroup of 50 children who resided in either an orphanage or foster care before adoption. Mean age at arrival was 16 +/- 19 months. Before adoption, 25 children resided in orphanages, 56 resided in foster care, and 22 resided in mixed-care settings. The 25 children who had resided in orphanages before adoption were matched for age at arrival, interval from arrival to clinic visit, and gender with a child adopted from foster care. Health and developmental status of these matched pairs were compared, allowing the first direct comparison of children raised in orphanages or foster care before adoption. Mild growth delays were frequent among the children. Mean z scores for weight, height, and head circumference were, respectively, -1.00, -1.04, and -1.08. Children from foster care had significantly better z scores for height, weight, and head circumference than those from orphanage or mixed care. Among children who were less than 2 years at arrival, growth measurements correlated inversely with age at arrival. Infectious diseases included intestinal parasites (8%) and latent tuberculosis infection (7%). Other medical conditions included anemia (30%), elevated lead levels (3%), and phenotypic facial features suggestive of prenatal alcohol exposure (28%). Adequacy of vaccine records from Guatemala was assessed: 28% met American Academy of Pediatrics standards for vaccine administration. Unsuspected significant medical diagnoses, including congenital anomalies and ocular, neurologic, and orthopedic problems, were found in 14%. Most children were doing well developmentally (80-92% of expected performance), but 14% had global developmental delays. Cognition, expressive and receptive language, and activities of daily living skills correlated inversely with age at arrival for children who were younger than 2 years at adoption. Among the 50 matched children, those who resided in foster care before adoption had better measurements for height, weight, and head circumference at arrival to the U.S. Those who resided in foster care scored significantly better for cognitive skills than those who had previously resided in orphanages; other skills did not differ between the 2 groups. Differences were not found between the 2 groups of children related to prevalence of medical diagnoses or phenotypic evidence suggesting prenatal alcohol exposure. In conclusion, Guatemalan adoptees display similar overall patterns of growth and developmental delays as seen in other groups of internationally

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adopted children, although not as severe. Younger children had better growth and development (cognition, language, and activities of daily living skills) than older children, regardless of location of residence before adoption. Among children who were matched for age, gender, and interval from adoption to evaluation, those who had resided in foster care had better growth and cognitive scores than children who had resided in orphanages before adoption. The findings support the need for timely adoptive placement of young infants and support the placement of children in attentive foster care rather than orphanages when feasible (4). Since 1989, American parents have adopted 18,846 Chinese children. The health and developmental status of these children was assessed after their arrival in the U.S. A total of 452 children (443 girls) in 2 groups were evaluated. The clinic group children (n=192) included all Chinese adoptees seen in an international adoption clinic between 1991 and 1998. The travel group comprised 260 of 325 Chinese children placed by a single Massachusetts adoption agency between 1991 and 1996 whose adoptive parents and American physicians responded to mailed questionnaires. One hundred ninetyone of the travel group children were cared during the adoption process in China. Growth and developmental delays were frequent in the clinic group. Z scores ≤-2 were found in 39% of children for height, 18% for weight, and 24% for head circumference. The duration of orphanage confinement was inversely proportional to the linear height lag (r =.9), with a loss of 1 month of height age for every 2. 86 months in the orphanage. Of the children, 75% had significant developmental delay in at least 1 domain: gross motor in 55%, fine motor in 49%, cognitive in 32%, language in 43%, social-emotional in 28%, activities of daily living in 30%, and global delays in 44%. The incidence of medical problems was similar in both groups of children (travel group and clinic group). Overall, among the 452 children, elevated lead levels were found in 14%, anemia in 35%, abnormal thyroid function tests in 10%, hepatitis B surface antigen in 6%, hepatitis B surface antibody in 22%, intestinal parasites (usually Giardia) in 9%, and positive skin test results for tuberculosis in 3.5%. One child each had hepatitis C exposure and congenital syphilis. No child had human immunodeficiency virus infection. Unsuspected significant medical diagnoses, including hearing loss, orthopedic problems, and congenital anomalies, were found in 18% (81/452) of

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the children. In conclusion, Chinese adoptees displayed a similar pattern of growth and developmental delays and medical problems as seen in other groups of internationally adopted children. An exception was the increased incidence of elevated lead levels (overall 14%). Although serious medical and developmental issues were found among the children, overall their condition was better than expected based on recent publicity about conditions in the Chinese orphanages. The long-term outcome of these children remains unknown. China, adoption, orphanage, institutionalized child (5). China has become a lead country for international adoption because of the relatively young age of the children and reported positive conditions of the orphanages. The process and outcome of growth and development of children adopted from China over their first two years with their adoptive families were examined. Seventy infant girls adopted from China at 8 to 21 months of age (Mean age = 13 months) were examined on arrival in Canada and 6, 12, and 24 months later. Comparisons were made with non-adopted Canadian girls of similar age and from a similar family background as adoptive parents on indices of growth and standardized measures of mental, psychomotor, and language development. At arrival, children adopted from China were smaller physically and exhibited developmental delays compared to current peers. Children adopted from China were functioning in the average range on physical and developmental measures within the first 6 months following adoption. However, they were not performing as well as current peers until the end of their second year after adoption. Even then, there was developmental variation in relation to comparison children and continuation of relatively smaller size with respect to height, weight, and head circumference. Physical measurement was related to outcomes at various points on all developmental measures. In conclusion, deprivation in experience in the first year of life has more long-lasting effects on physical growth than on mental development. The variable most consistently related to development was height-toage ratio. As a measure of nutritional status, the findings reinforce the critical importance of early nutrition (6). ASSESSMENT: health, education, and social service professionals, as well as adoptive and prospective adoptive parents, should be aware of the risk for disabilities among adopted children.

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Adopted children have many health problems such as infectious diseases, anemia, elevated lead levels, and phenotypic facial features suggesting prenatal alcohol exposure, congenital anomalies and ocular, neurologic, and orthopedic problems, including hearing loss, and developmental delays. In the Bible, Mephiboshet's lame can be defined as an orthopedic problem: "And Jonathan, Saul's son had a son that was lame of his legs….. " (II Samuel 4:4). References 1. Sufian S. As long as parents can accept them: medical disclosure, risk, and disability in twentieth-century American adoption practice. Bull Hist Med. 2017;91(1):94-124. 2. Kreider RM, Cohen PN. Disability among internationally adopted children in the United States. Pediatrics. 2009;124(5):1311-8. 3. Boberiene LV, Yazykova E. Children with disabilities in Russian institutions: can the West help protect the most vulnerable? Am J Orthopsychiatry. 2014;84(3):266-72. 4. Miller L, Chan W, Comfort K, Tirella L. Health of children adopted from Guatemala: comparison of orphanage and foster care. Pediatrics. 2005; 115(6):e710-7. 5. Miller LC, Hendrie NW. Health of children adopted from China. Pediatrics. 2000;105(6):E76. 6. Cohen NJ, Lojkasek M, Zadeh ZY, et al. Children adopted from China: a prospective study of their growth and development. J Child Psychol Psychiatry. 2008;49(4):458-68.

SPECIAL HEALTH NEEDS There are 11.2 million children with special health care needs in the U.S. or one in five households caring for a special needs child. A small group of children who need continuous medical, nursing, therapeutic services that enable them to survive is growing in numbers. Physical health (physical functioning), mental health (emotional, social, and cognitive functioning; communication; and worry), family functioning (daily activities, and family relationships) were examined, and care burden (caregiver employment, caregiving time, travel time, and health-related out-of-pocket expenditures) of parent caregivers for medically complex, medical technologydependent children were evaluated. Data were collected once a

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month for 5 months on 84 parents recruited in South Florida using the Pediatric Quality of Life Family Impact Module. Physically, parents were tired when they woke up: too tired to do the things they liked to do and with little energy for chores or social activities. Mentally, they were frustrated, anxious, and angry; felt helpless and hopeless; had cognitive problems remembering and focusing on tasks; were worried about the child's medications, treatments, and side effects; and were anxious about child's future and effect of the child's condition on other family members. Socially, they felt isolated and that people did not understand their family situation; they found it hard to talk with others including physicians and nurses. Average weekly hours of direct care was 33.0 (SD = 30.4 hours); average monthly out-of-pocket expenditures was $348.78 (SD = $623.34). It is essential to assess parents' physical and mental health and functioning and to provide interventions to improve health and functioning for both the parents and the children for whom they are caring (1). Approximately 750,000 children in the U.S. with special health care needs will transition from pediatric to adult care annually. Fewer than half receive adequate transition care. Conversations were conducted with key informants representing clinicians who provide transition care, pediatric and adult providers of services for individuals with special health care needs, policy experts, and researchers; searched online sources for information about currently available programs and resources; and conducted a literature search to identify research on the effectiveness of transition programs. Twenty five studies evaluating transition care programs were identified. Most (n=8) were conducted in populations with diabetes, with a smaller literature (n=5) on transplant patients. An additional 12 studies on a range of conditions were identified, with no more than 2 studies on the same condition. Common components of care included use of a transition coordinator, a special clinic for young adults in transition, and provision of educational materials. In conclusion, the issue of how to provide transition care for children with special health care needs warrants further attention. Research needs are wide ranging, including both substantive and methodologic concerns. Although there is widespread agreement on the need for adequate transition programs, there is no accepted way to measure

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transition success. It will be essential to establish consistent goals to build an adequate body of literature to affect practice (2). Care coordination is widely recognized as a key element of care for patients with chronic and complex medical conditions and their families. In care for children with special health care needs (CSHCN) the Family Pediatrician (FP) plays a central role as care coordinator. The FPs' activities of care coordination were evaluated for children with special health care needs in the pediatric primary care setting, using an on-line measurement tool. Within the prospective cohort study SpeNK (Special Needs Kids), newborns and CSHCN were recruited at discharge from three hospital facilities in Bologna province, from October 1st 2012 to September 30th 2014. Their FPs was invited to complete a questionnaire (SpeNK-FP) at each encounter for the patient during a 9-month period after hospital discharge. SpeNK-FP was developed by adapting the Care Coordination Measurement Tool (CCMT©) developed by Antonelli et al., to the Italian organizational context. The outcome of interest, derived from the questionnaire, is inappropriate use of services. Forty FPs completed assessments for 49 children at each of 382 clinical encounters. The majority of children (71.4%) had special health care needs, without complicating social issues. FPs reported "no need for care coordination" in 50.8% of the encounters and 41.1% of records about patient need requiring care coordination. The most common activity implemented to meet children's needs was telephone contact with a medical provider. According to FPs, 80% of encounters prevented inappropriate services use. In multivariate regression, pediatric-specialist contact (telephone or in person) was associated with reduced odds of physician report of preventable hospitalization (OR 0.06; 95% CI 0.01-0.42; p = 0.005). In conclusion, the findings show the potential for FPs in Italy to serve as care coordinators and facilitate the implementation of integrated care pathways for children with special health care needs (3). Coordination of care is an essential function of pediatric primary care, needed most by CSHCN. Although complex, its necessity has become better recognized with the recent increase in attention in the U.S. to the comprehensive "medical home" model of care. Coordination is highly dependent on effective communication within the health care system and between the health care system and the larger community. While coordination may best be undertaken at

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the level of the physician practice, a team approach involving nonphysician staff and families as primary participants may be the best option in many cases. More attention is being paid at the health policy level to the implementation of coordination of care, although solutions to reimbursement barriers have yet to be implemented. Considerable progress on methods to improve care coordination in the primary care practice setting has been made recently. Many of these efforts have used quality improvement techniques adapted from the business world. Emerging measures of the process of care coordination are also being developed, although few studies have been published to date showing a positive impact of care coordination. The value of coordination of care as an essential part of medical care for CSHCN is becoming widely recognized. Methods to implement it within pediatric primary care practices are being developed, although more data demonstrating its value are needed to inform policy changes (4). Families and professionals agree that children and adolescents need access to community-based medical homes. This is especially true for children with CSHCN. Most primary care practices are designed for children's routine preventive and acute care needs. CSHCN benefit from care that is integrated with well-child and acute care; coordinated and actively co-managed with specialists, therapists, and educators; and offered in a planned, anticipatory manner. As the primary caregiver and decision maker, families need to be supported in a culturally effective way. Families want community resources that are integrated with care processes. Primary care practices that serve CSHCN require a practical and effective improvement method to become fully realized medical homes. A change method, which blends improvement strategies with progressive measurement, must be perceived by practices as practical and helpful, and it must be supported. The Center for Medical Home Improvement has developed and tested an effective model of medical home improvement and tools to measure the status of a practice and its progress of change (5). Participating in everyday life is essential to the healthy development and emotional well-being of children. However, little is known about siblings of children with complex care needs (CCN), and their perspectives and experiences of participating in everyday life. Research findings add to our understanding of how siblings of

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children with CCN view and experience participation in everyday life. To arrive at a detailed and accurate understanding of the siblings' perspectives and experiences, the qualitative research design of ethnography was used. Sixteen siblings (seven brothers, nine sisters) of children with CCN were recruited. The siblings ranged in age between 7 and 25 years, with a mean age of 14 years. All siblings took part in opened-ended interviews and completed ecomaps to describe how they participate. Five siblings also took part in the photovoice method. Analysis involved several iterative steps, congruent with ethnography. Four main themes emerged as follows: 1] participation is about being part of a group; 2] it feels good; 3] I love my sibling but…; and 4] promoting participation. Siblings of children with CCN identified challenges to participation and also described ways that they participate that relate to the care of their sibling. In conclusion, siblings prioritized the relationship with their sisters and brothers with CCN in their life, and a great deal of their participation was chosen with their sibling in mind. Sibling-to-sibling relationships were distinct and meaningful and, as a result, participation was always done mindfully and with the family needs at the forefront. Nonetheless, clinicians caring for children with CCN must keep in mind the challenges that siblings of children with CCN experience and provide strategies to siblings that will help to promote their participation in everyday life (6). The role health insurance plays was assessed in influencing access to care and use of services by children with special health care needs. Data were analyzed for 57,553 children younger than 18 years old included in the 1994-1995 National Health Interview Survey on Disability. The survey obtained information on special health care needs, insurance status, and access to and use of health services. Bivariate and multivariate analyses were used to assess the association of insurance with several measures of access and utilization, including usual source of care, site of usual care, missed or delayed care, and use of ambulatory physician services. Using the federal Maternal and Child Health Bureau definition of CSHCN, 18% of U.S. children under 18 years old had an existing special health care need in 1994-1995. An estimated 89% of these children had some form of health insurance coverage, most often private health insurance. Insured children were more likely than uninsured children to have a usual source of care (96.9% vs. 79.2%). Among those with a

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usual source of care, insured children were more likely than uninsured children to have an identified regular clinician (87.6% vs. 80.7%). Insured children were less likely to report unmet health needs, including medical care (2.2% vs. 10.5%), dental care (6.1% vs. 23.9%), prescriptions, and/or eyeglasses (3.1% vs. 12.3%), and mental health care (0.9% vs. 3.4%). Insured children were also more likely to have a physician contact in the past year (89.3% vs. 73.6%) and have more physician contacts on an annual basis (8.5 vs. 4.1 contacts). No differences were found between insured and uninsured children in availability of afterhours medical care (evenings and weekends) or satisfaction with care. Some modest differences were found in access between publicly and privately insured children. Privately insured children were more likely to have a usual source of care (97.6% vs. 95.3%) and a regular clinician (91.0% vs. 81.1%). Privately insured children were also less likely to report dissatisfaction with care at their usual site of care (14.9% vs. 21.0%) and have access to care on evenings and weekends (6.8% vs. 13.4%). No substantial differences were found between privately and publicly insured children in prevalence of unmet health needs or delays in obtaining care due to cost. The findings illustrate the importance of health insurance for children with special health care needs. Continued efforts are needed to ensure that all children with special health care needs have insurance and that remaining access and utilization barriers for currently insured children with special health needs (7). Parents' perceptions of their children who have complex health needs and their experience of communication, play, socializing and learning were investigated. Fourteen parents participated in this qualitative study. Semi-structured interviews were used to elicit their perceptions of the children's opportunities and experiences. Parents often felt that their child's efforts to communicate were not valued. Play and socializing could be more challenging for their children than they were for their peers, partly because of their physical needs, but also because of the priority which others placed on these activities and society's provision for children with complex health needs. Parents reported a mixed experience of inclusion in education settings. Those who support children who have complex health needs should consider how their communication, play, socializing and education can best be supported and encouraged (8).

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A qualitative study designed to explore parents' views on how their child with additional needs had been cared for by hospital nursing staff were investigated, focusing on how well their own and their child's needs had been identified and met. Twelve interviews with parents of children with additional needs and a thematic analysis of the interview data was conducted. Four themes were developed to provide an insight into parents' views about their experiences: their prior experiences of hospital care, including the process of being told the original diagnosis; communication with staff; nurse-parent relationships; and perceptions of nurses and nursing care. It concludes that parents experience some difficulties in developing a trusting relationship with the nurses caring for their child with additional needs. Parents perceive that nurses are not always able to recognize and respond to their needs when caring for their child. Failure to address these needs can interfere with the development of effective nurse-parent relationships (9). ASSESSMENT: there are 11.2 million CSHCN in the U.S. or one in five households caring for a special needs child. A small group of children who need continuous medical, nursing, therapeutic services that enable them to survive is growing in numbers. Coordination of care is an essential function of pediatric primary care, needed most by children with CSHCN. Although complex, its necessity has become better recognized with the recent increase in attention in the U.S. to the comprehensive "medical home" model of care. Participating in everyday life is essential to the healthy development and emotional well-being of children. Siblings prioritized the relationship with their sisters and brothers with CCN in their life. The Bible tells us that Mephiboshet, the son of King David's best friend Jonathan was located and brought to the King. Unfortunately, this boy was lame. Mefiboshet was adopted and the King, his family and his servants were responsible for the wellbeing of this child, including special needs related to his disability. References 1. Caicedo C. Families with special needs children: family health, functioning, and care burden. J Am Psychiatr Nurses Assoc. 2014;20(6):398-407.

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2. Davis AM, Brown RF, Taylor JL, et al. Transition care for children with special health care needs. Pediatrics. 2014;134(5):900-8. 3. Zanello E, Calugi S, Sanders LM, et al. Care coordination for children with special health care needs: a cohort study. Ital J Pediatr. 2017;43(1):18. 4. Stille CJ, Antonelli RC. Coordination of care for children with special health care needs. Curr Opin Pediatr. 2004;16(6):700-5. 5. Cooley WC, McAllister JW. Building medical homes: improvement strategies in primary care for children with special healthcare needs. Pediatrics. 2004;113(5 Suppl):1499-506. 6. Woodgate RL, Edwards M, Ripat JD , et al. Siblings of children with complex care needs: their perspectives and experiences of participating in everyday life. Child Care Health Dev. 2016;42(4):504-12. 7. Newacheck PW, McManus M, Fox HB, et al. Access to health care for children with special health care needs. Pediatrics. 2000;105(4 Pt 1):760-6. 8. Hewitt-Taylor J. Parents' views of their children who have complex health needs. Paediatr Nurs. 2008;20(8):20-3. 9. Avis M, Reardon R. Understanding the views of parents of children with special needs about the nursing care their child receives when in hospital: a qualitative study. J Child Health Care. 2008;12(1):7-17.

MANAGEMENT When parents of young children with special health care needs (CSHCN) receive their child's diagnosis, they encounter information they may not understand, emotions they may not know how to cope with, and questions about their child's immediate and long-term future that frequently lack answers. The challenge of health care providers is how to prepare parents for caring for their CSHCN, for coping with any resulting challenges, and for accessing the systems and services that can assist them. Evidence of the information and support needs of parents of young CSHCN was reviewed and whether online social support can serve as an avenue for learning and empowerment for these parents was determined. A scoping review identified the challenges, coping mechanisms, and support needs among parents of CSHCN, and the reach and effectiveness of digital technologies with these families and health care providers. Interviews were conducted with professionals serving parents of CSHCN. The literature review and interviews suggested that parent's best learn the information they need, and cope with the emotional challenges of raising a CSHCN, with support from other parents of

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CSHCN, and that young parents in recent years have most often been finding this parent-to-parent support through digital media, particularly social media, consistent with the theory of online social support. Evidence also shows that social media, particularly Facebook, is used by nearly all women aged 18-29 years across racial and socioeconomic lines in the U.S. In conclusion, parents of young CSHCN experience significant stress but gain understanding, receive support, and develop the ability to care for and be advocates for their child through parent-to-parent emotional and informational social support. Online social support is most effective with young adults of childbearing age, with social media and apps being the most useful within the theoretical framework of social support. This opens new opportunities to effectively educate and support parents of young CSHCN. Providers seeking to inform, educate, and support families of CSHCN should develop strategies to help parents find and use social support through digital resources to facilitate their emotional adjustment and practical abilities to care for and access services for their child (1). The applicability of the Family Management Measure (FaMM) was assessed to families in which there was a child with an intellectual disability versus a chronic condition. Drawing on data from 571 parents of children with a chronic physical condition and 539 parents of children with Down syndrome (DS), the two groups across the six FaMM scales were compared. After accounting for the covariate effects of race, ethnicity, family income, and child age, significant differences were found in four of the six FaMM scales, with parents of children with DS reporting a significantly more positive view on the Condition Management Effort and View of Condition Impact scales and a significantly less positive view on the Child's Daily Life and Condition Management Ability scales than parents of children with a chronic physical condition. There were insignificant differences between groups on the Family Life Difficulty and the Parental Mutuality scales. The analysis provided evidence of the applicability of the FaMM for studying families in which there is a child with DS and its utility in identifying the common and unique challenges of family management between the groups (2). Children with developmental disabilities are at substantially greater risk of developing emotional and behavioral problems compared to their typically developing peers. While the quality of

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parenting that children receive has a major effect on their development, empirically supported parenting programs reach relatively few parents. A recent trend in parenting intervention research has been the adoption of a public health approach to improve the quality of parenting at a population level. This has involved delivering parenting interventions on a large scale and in a cost-effective manner. Such trials have been demonstrated to reduce negative parenting practices, prevent child maltreatment, and reduce child behavioral and emotional problems. However, these trials have been restricted to parents of children who are developing typically. The rational for the extension of a population health approach to parenting interventions was evaluated for children with developmental disabilities. It has been argued that a populationbased implementation and evaluation trial of an empirically supported system of interventions is needed to determine whether this approach is viable and can have a positive impact on parents and their children in a disability context. The Stepping Stones Triple P Positive Parenting Program is presented as an example of a parenting intervention that satisfies the requirements for such a trial (3). Valid tools to assess family needs for children with physical disabilities are needed to help tune pediatric rehabilitation care processes to individual needs of these families. To create such a family needs inventory, needs of families of children with a physical disability (age 0-18 years) were identified. Differences were examined in the number and type of needs listed by families when asked for by means of an interview compared with using an inventory. Forty-nine families of children with a wide variety of physical disabilities (mean age 7.7 years; SD 4.6) participated in semistructured interviews, focusing on family needs. They also checked an inventory of 99 items (based on a previously conducted literature review), regarding their family needs. In addition, individual interviews with healthcare professionals, and panel meetings with healthcare professionals and parents were held to further identify relevant family needs for the inventory. The individual parent and healthcare professional interviews raised 41 needs that were not included in the original inventory of 99 items. The panel meetings raised a further 49 needs. After restructuring and reformulating several items, a 187-item Family Needs Inventory - Pediatric Rehabilitation (FNI-PR) was created. The parent interviews revealed

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significantly less family needs (mean number of needs = 10.8; SD = 6.0) compared with using the inventory (mean number of needs = 31.7; SD = 19.7; (p