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PubMed2005

Integrating palliative care into chronic care for children with severe neurodevelopmental disabilities.

BACKGROUND: Children with severe neurodevelopmental disabilities and complex medical conditions are a growing and unique segment of the pediatric population. The increasing use of life sustaining technologies has provided the chance at an extended life and increasing inclusion within the broader community. Families work to overcome personal and professional biases, clinical uncertainties, and pragmatic obstacles to improve quality of life. Little attention, however, has been paid to the unique challenges of caring for a dying child affected with neurodevelopmental delay. DISCUSSION: In this paper we outline several specific barriers to the provision of excellent end-of-life care for these children and their families. We also outline our approach for overcoming these barriers. SUMMARY: The benefit of comprehensive palliative care in select pediatric populations has been demonstrated. Extending and tailoring those service to meet the unique needs of children with severe disabilities is the next logical step in that continuum. Ultimately, acknowledging that the lives of children with neurodevelopmental disabilities and their families have a unique quality will permit the human face of medical care to keep pace with technologic advances. Appreciation of the value of a perhaps incomparable quality of life will allow for a better quality of dying for children with severe neurodevelopmental disabilities.

Attitude of Health Personnel↗
PubMed2001

Compliance with home rehabilitation therapy by parents of children with disabilities in Jews and Bedouin in Israel.

Among key points in making progress and succeeding with a therapeutic programme for children with disabilities is parental compliance with the regime for their child. The purpose of this study was to evaluate factors influencing compliance with home therapy in the Jewish and Bedouin populations. Data were collected by structured questionnaires. A total of 193 families participated (84% response rate) with children who ranged in age from 6 months to 6 years (mean age at first visit to the centre was 9.5 years in Jews and 16.1 years in Bedouin). Compliance was significantly lower among the Bedouin. Multivariate regression analysis showed that the strongest contributory factor in lack of compliance was being Bedouin. The second factor was intensity of questioning destiny, indicating that parents with these feelings may be less likely to comply with therapeutic regimes. Other factors which were associated with compliance were parents' education and socioeconomic status: lower levels on these dimensions corresponded with lower parental compliance. These results were illuminated by a trial intervention programme for Bedouin families which involved telephone contact, translation facilities, and detailed explanations during visits to the centre. Intervention increased the compliance rate of the Bedouin appointments with specialists to 76% (91 of 120 appointments) thereby reaching similar levels to those of the Jewish group. These preliminary results indicate that the strong association between non-compliance and being Bedouin may be due to factors of communication, and that the Bedouin are receptive to therapeutic interventions when communicated in their own language.

Arabs↗
PubMed2000

Children's disability law: the more things change, the more they stay the same.

The social security system insures both children and adults who are disabled. Over the years, the Social Security Administration and the courts have developed a number of tests to determine whether a child is eligible to receive social security benefits. In 1997, as part of its attempt to reform welfare, Congress laid out a new, arguably more restrictive standard that must be met before a child can be deemed "disabled." For all of the apparent changes, however, it is unclear how much the standards have changed in practice.

Child↗
PubMedDate not supplied

The effects of relationship focused intervention on Korean parents and their young children with disabilities.

This study was conducted to examine the impact of Relationship Focused Intervention (RFI) on a sample of Korean mothers and their preschool-aged children with disabilities. Subjects were 18 mothers of children with developmental problems (ages 3-8 years). Ten of these mothers were assigned to an RFI Treatment group and eight to a No RFI Control group. The RFI was adopted from the Family/Child Curriculum (Mahoney, G. (1999; Family/Child Curriculum: A relationship focused approach to parent education/early intervention. Tallmadge, OH: Family Child Learning Center). This intervention focused on teaching mothers to use responsive interactive strategies through a process of modeling, coaching, role-playing and video feedback. It was implemented with parents during weekly group and individual intervention sessions that were conducted over three months period. Comparison of pre- and post-intervention assessments of parent-child interaction indicated that RFI was effective at encouraging parents to become more responsive, affective and achievement oriented with their children. These changes in mothers' interactional style were associated with an 18% increase in children's interactive behaviors. Regression analyses indicated that increases in children's behavior were associated positively with maternal responsiveness and negatively with maternal achievement orientation. Results from this study are discussed in terms of (a) implementing RFI with Korean mothers and (b) the mechanisms by which RFI promotes children's development.

Adult↗
PubMed1999

American Academy of Pediatrics. Committee on Children With Disabilities. Care coordination: integrating health and related systems of care for children with special health care needs.

Care coordination is a process that links children with special health care needs and their families to services and resources in a coordinated effort to maximize the potential of the children and provide them with optimal health care. Care coordination often is complicated because there is no single entry point to multiple systems of care, and complex criteria determine the availability of funding and services among public and private payers. Economic and sociocultural barriers to coordination of care exist and affect families and health care professionals. In their important role of providing a medical home for all children, primary care pediatricians have a vital role in the process of care coordination, in concert with the family.

Case Management↗
PubMed2004

Mild intellectual disability in children in Lahore, Pakistan: aetiology and risk factors.

BACKGROUND: One of the main objectives of studying intellectual disability (ID) in children is to explore its causes. A specific aetiological diagnosis is important in determining the prognosis, nature and extent of services needed to support affected children. METHODS: Aetiology and risk factors in mild ID were studied in a cohort of longitudinally followed children (6-10 years of age, n = 40) in four population groups in and around Lahore, Pakistan. RESULTS: The overall prevalence of mild ID was 6.2%. In 22% of the cases the onset of mild ID was prenatal with small for gestational age and multifactorial inheritance as the main underlying factors. During the postnatal period (28% of the cases), social deprivation and malnutrition were the major causes of ID. In a substantial proportion of the cases (50%), the cause of ID could not be traced. CONCLUSION: The present study indicates a clear relationship of mild ID with prenatal and postnatal malnutrition and social deprivation. Two independent variables, maternal illiteracy and small head circumference at birth, showed a clear association with the development of mild mental disability among children in the study population.

Catchment Area, Health↗
PubMed1992

The HOME inventory: a new scale for families of pre- and early adolescent children with disabilities.

A preliminary form of a new version of the Home Observation for Measurement of the Environment (HOME) is presented. It is designed for use with families of children aged 10-15. The 80-item preliminary version of the Preadolescent HOME (PA-HOME) was field tested on 117 children with varying disabilities. The 80 items were selected from a pool of over 250 items by means of several field tests and accompanying item analyses. Both factor analyses and item analyses were used to help pare down items and produce a scale with acceptable psychometric properties. The psychometric properties of the PA-HOME are quite similar to those reported for the other three versions of the HOME Inventory. It appears to be a reasonably reliable scale with moderate correlations with other measures of the family environment, such as SES, social support, and marital stability. It has low to moderate correlations with measures of child competence in this sample of children with disabilities. The correlations are of the same general magnitude of correlations between the Infant-Toddler, Early Childhood, and Middle Childhood versions of HOME in samples of younger children with disabilities.

Adaptation, Psychological↗
PubMed1995

Fathers helping out: shared child care and marital satisfaction of parents of children with disabilities.

The relation between division of child care and marital satisfaction in couples rearing children with disabilities was explored. Greater father participation in child care was related to higher marital satisfaction for both parents. Higher family income was also related to higher marital satisfaction for fathers only. Results were discussed in the framework of recent adaptations to Hill's (1949) ABCX Model of Family Adaptation.

Adaptation, Psychological↗
PubMed2006

Homocysteine, folate, lipid profile and MTHFR genotype and disability in children with myelomeningocele.

STUDY DESIGN: We performed a cross-sectional study in myelomeningocele children. OBJECTIVE: To investigate plasma total homocysteine, folate, lipid profile, 5,10- metylenetetrahydrofolate reductase genotype (MTHFR) and disability. MATERIALS AND METHODS: Sixty patients aged between 2 and 14 years with myelomeningocele (18 ambulatory and 42 non-ambulatory) and 150 healthy children of same age, are investigated for lipid profile, homocysteine concentration and for the determination of MTHFR genotype. RESULTS: Plasma homocysteine concentrations were significantly higher in myelomeningocele children than in the control group. In myelomeningocele female group, there were higher levels of total cholesterol and very-low-density lipoprotein cholesterol with respect to the control group. Myelomeningocele children walking with tutorial aid showed triglyceride levels significantly lower than those observed in myelomeningocele non-walking children. CONCLUSION: Disability, insulin uptake, lipid, homocysteine, hormones plasma levels, and genetic factors such as allelic variants of MTHFR are possible for cardiovascular disease in myelomeningocele children. This study highlights the importance of a continuous surveillance of any changes in the lipid profile that should be corrected as soon as possible. Constant physical activity necessary to increase HDL levels should be planned in all susceptible children. Nonetheless, further investigations are necessary to identify new homocysteine susceptible genes for prevention of early atherosclerosis and consequent cardiovascular disease.

Adolescent↗
PubMed2005

The effect of consanguineous marriage on reading disability in the Arab community.

The present study examined the effect of consanguineous marriage in the Arab community on reading disabilities of offspring. It examined whether the rate of reading disabilities was higher among offspring of first-cousin parents than offspring of unrelated parents; and whether reading-disabled children of first-cousin parents were more disabled in phonological awareness and phonological decoding than reading-disabled children of unrelated parents and normally reading younger children. These questions were investigated among 814 pupils of the 4th, 5th, and 6th grades, using word recognition and reading comprehension tests. Two experimental groups were chosen from this population. These were a reading-disabled group of 22 pupils who were children of first-cousin marriages and 21 pupils who were children of unrelated parents. A control group was also selected, consisting of 21 younger normally reading pupils at the same reading level. All the groups were tested on non-words, real words, phonological, orthographic and working memory measures. The results indicated that the rate of reading disabilities among children of first-cousin parents was higher than that of with children of second-cousin parents, distantly related parents, or unrelated parents. Further, no differences were found in phonological awareness and decoding between the two reading-disabled groups. Moreover, the results indicate a significant advantage of the younger normal readers over the reading-disabled children in the measures of phonological awareness, decoding, and orthographical knowledge that requires spelling. However, in reading common words and choosing words in context, the performance of the reading-disabled groups and the normally reading group were similar. It has been suggested that further research is needed to evaluate the role of intelligence, nevertheless our results provide new evidence for a genetic basis to reading disabilities.

Arabs↗
PubMed2001

Children with disabilities: a longitudinal study of child development and parent well-being.

This Monograph presents 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. The study was designed to generate and test conceptual models of child and family development and contribute to the knowledge base that informs social policy and practice. The sample for the investigation reported here consists 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) child-related 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 mother-child 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. The implications of these findings for both the science of child development and the policies and practices of developmental intervention are discussed.

Adaptation, Psychological↗
PubMedDate not supplied

Constructing daily routines: a qualitative examination of mothers with young children with disabilities.

This qualitative research study explored the daily routines that mothers construct in response to the emerging self-care skills of their young children with disabilities. Over 2 months, data were collected from naturalistic observations and in-depth interviews of six mothers and their children. Ecocultural theory was used to examine the influence of ecological constraints and cultural values on the construction of routines. The daily occupations of these families were shaped by the simultaneous process of accommodating to ecocultural influences and anticipating future possibilities. A mother's vision for her child's future also played a pivotal role in determining whether emerging skills would be reinforced as a part of the home routines.

Activities of Daily Living↗
PubMed2004

Functional predictors of school participation by children with disabilities.

This study examined the functional requirements that significantly predicted participation of US elementary school children with a variety of disabling conditions (N = 266), in seven different school settings: Transportation, Transitions, Regular classroom, Special classroom, Mealtime, Bathroom, and Playground. Performance on a number of setting-relevant tasks was expected to be predictive of meaningful participation in each school environment. Stepwise multiple regression analyses were conducted to identify the order of importance of the relevant variables as well as the smaller set of functional tasks that best predicted children's participation in each setting. The results revealed that successful participation in the different elementary school settings was strongly associated with performance of both physical and cognitive/behavioural activities. Furthermore, each setting had a unique set of predictors, suggesting that some aspects of function are context-specific. Findings from this study may inform therapists about the most relevant areas of function that support social and physical participation of children with disabilities who are included in regular schools.

Activities of Daily Living↗
PubMed2005

Siblings of children with disabilities: research themes.

Until the early 1980s, most researchers paid little attention to sibling relationships. Studies of mothers dominated the research agenda, to the almost total exclusion of fathers, extended families, and siblings. Although in early classic studies of families of children with disabilities, investigators embraced a family systems approach that included siblings, this emphasis did not take root until recently. There has been an impressive growth in the number of published studies focusing on siblings of children with disabilities. In this paper, my goal is to examine themes in this research and reflect on our state of knowledge.

Child↗