The daily lives and occupations of Tibetan families who have a child with disabilities

Abstract

The aim of this paper is to explore and describe the experiences of Tibetan families living in remote villages that have a child with disabilities. Focusing on their specific situations and the influences on their daily occupations, the study provides a deeper understanding of the families' experiences, perceptions, and expressed needs. Two families participated in an ethnographic study. Both participant observation and conversational interviews were used to collect data. A comparative data analysis revealed the following themes: 1) Families' views on disability and care provision: “What we have, we are willing to give”; 2) Families' occupational pressures: “One person needs to be the caregiver all the time”; 3) Families' desires: “That the child can feed and go to the toilet independently”. Implications of the findings for practice in remote areas and cross-cultural contexts are discussed. These findings may help to provide a good foundation for occupational therapy practice in this context.     

Hygiene habits and carriers in families with a child who has had typhoid fever.

The relationship between asymptomatic shedding of bacterial enteropathogens and the hygiene habits of families who have had a child with typhoid fever (TF) are investigated. The sample was made up of 80 families: 40 families in which one child had had TF (Group A) and 40 in which no children or either of the parents had had a history of TF (Group B). In each group 20 families belonged to a low socioeconomic status (SES) and 20 to a high SES. A structured interview was used to evaluate the SES and the hygiene habits of the child; observations were made to measure the hygiene habits of the family (toilet, kitchen and food preparation) and bacteriological studies (fecal samples and hand markers). Results show that carriers were more frequent in Group A than in Group B. The bacterial species found were significantly more numerous in Group A than in Group B (fecal samples: E. coli, the classic serotypes, Shigella ssp, and hand markers: E. coli). Families of Group A had higher carriage rates than those of Group B. Finally there exists a significantly higher association between inadequate hygiene habits and carrier families. These results show the need to teach specific habits of proper hygiene to the entire population, because the fact of belonging to the high SES does not in itself preclude inadequate hygiene habits.     

Parental health and child schooling

This paper provides new empirical evidence on the impact of parental health shocks on investments in children's education using detailed longitudinal data from Bosnia and Herzegovina. Our study controls for individual unobserved heterogeneity by using child fixed effects, and it accounts for potential misreporting of self-reported health by employing several, more precise, health indicators. Results show that co-living children of ill mothers, but not of ill fathers, are significantly less likely to be enrolled in education at ages 15–24. Moreover, there is some evidence that mother's negative health shocks are likely to raise the employment probability of children due to the need to cover higher health expenditures.     

Parental leave and child health

This study investigates whether rights to parental leave improve pediatric health. Aggregate data are used for 16 European countries over the 1969 through 1994 period. More generous paid leave is found to reduce deaths of infants and young children. The magnitudes of the estimated effects are substantial, especially where a causal effect of leave is most plausible. In particular, there is a much stronger negative relationship between leave durations and post-neonatal or child fatalities than for perinatal mortality, neonatal deaths, or low birth weight. The evidence further suggests that parental leave may be a cost-effective method of bettering child health.     

Parental behavior and child health

In this paper we document the ways in which parental behavior and socioeconomic status affect children's health. We examine parental behavior in both the prenatal period and childhood. We present evidence on the correlation of this behavior with income and parents' socioeconomic status, and on the ways in which parents' actions affect children's health. We conclude that while health insurance coverage and advances in medical treatment may be important determinants of children's health, they cannot be the only pillars: Protecting children's health also calls for a broader set of policies that target parents' health-related behavior.     

Parental coping and family stress I: Resources for and functioning of families with a preschool child having a developmental disability

While some families function well in the face of the demands of raising a handicapped child, many experience considerable stress. To assist these families, it is important to identify the characteristics of some families which allow them to raise their children while maintaining the well being of individual family members and the family system.

The purpose of this study was to examine the T-Double ABCX Model of Family Adaptation in relation to the adaptive functioning of 16 families raising preschoolers with developmental disabilities. It was concluded that the model provided a useful framework for guiding future research into the adaptive process of families raising children having disabilities.     

Parental income and child health in Germany

Using newly available data from Germany, we study the relationship between parental income and child health. We find a strong gradient between parental income and subjective child health as has been documented earlier in the United States, Canada, and the United Kingdom. The relationship in Germany is about as strong as in the United States and stronger than in the United Kingdom. However, in contrast to US results, we do not find consistent evidence that the disadvantages associated with low parental income accumulate as the child ages, nor that children from low socioeconomic background are more likely to suffer from doctor-diagnosed conditions. There is some evidence, however, that high-income children are better able to cope with the adverse consequences of chronic conditions. Investigating potential diagnosis bias, we find only weak evidence for health disadvantages for low-income children when using objective health measures, but some evidence for under-utilization of health services among low-income families.     

Parental stress,coping strategies and social support in families of children with a disability

The aim of this research was to compare parental stress, coping strategies and social support perceived in families of children with low functioning autism (n = 8), high functioning autism (n = 10), Down syndrome (n = 12) and parents of typically developing children (n = 20). Specifically, the objective was to investigate which variables (coping strategies and perception of social support available) might better predict different stress outcomes in the four groups. Parents were asked to fill in three questionnaires: Parent Stress Index, Coping Orientation to Problems Experienced and Social Support Questionnaire. Significant differences among groups in all of the variables considered were found. These results suggest the advisability of fostering functional coping strategies and social support received in families of children with disabilities, and especially in those with children with low functioning autism.     

Parental economic stress: evidence of an overlooked public health risk among Swedish families

BACKGROUND: Studies have demonstrated that when parents shoulder considerable financial responsibilities, adverse health outcomes may occur. The present study assesses the association between economic stress and self-rated health in a sample of Swedish parents, and especially how this relation is affected by foreign origin and employment status. METHODS: A questionnaire was sent to a random sample of 5,600 individuals between the ages of 21 and 81 in Malm?, Sweden. The total response rate was 69%. Among the respondents, 824 were parents having at least one child living at home. The main exposures were such sociodemographic variables as country of origin and employment status, and economic stress. The outcome variable was self-rated health. RESULTS: Of the parents in the study, the 34.7% coded as exposed to economic stress showed a significantly increased odds ratio for poor self-rated health (OR=3.12, 95% CI: 2.01-4.84) adjusted for age and sex. After controlling for foreign origin and unemployment, the odds ratio remained statistically significant regarding exposure to economic stress (OR=1.94; 1.16-3.23). In the multivariate model, foreign origin and unemployment were also strongly associated with poor self-rated health (OR=1.78, 95% CI: 1.12-2.88; OR=1.67, 95% CI: 1.01-2.75, respectively). The adjusted population-attributable risk for poor self-rated health was estimated to be 27.4% for economic stress, 26.6% for foreign origin, and 16.7% for unemployment. CONCLUSIONS: Parental economic stress was associated with low self-rated health to a statistically significant degree, even when accounting for employment status and foreign origin. It, therefore, deserves to be seriously considered as an potential public health risk factor among Swedish families.     

Maternal parenting stress and its correlates in families with a young child with cerebral palsy

Objective   To investigate factors predicting parenting stress in mothers of pre-school children with cerebral palsy.
Method   Eighty mothers and children participated. Mothers completed the Parenting Stress Index (PSI) and the following measures of family functioning: family support, family cohesion and adaptability, coping strategies, family needs and locus of control. Children were assessed using the Griffiths Scales and the Gross Motor Function measure. The child's home environment was assessed using Home Observation for Measuring the Environment.
Results   Mothers had higher mean total PSI scores than the means for the typical sample; 43% had total PSI scores above the threshold for clinical assessment. Cluster analysis demonstrated five distinct clusters of families, more than half of whom were coping well. High stress items were role restriction, isolation and poor spouse support, and having a child who was perceived as less adaptable and more demanding. Lower stress items indicated that this sample of mothers found their children emotionally reinforcing and had close emotional bonds. Regression analysis showed that the factors most strongly related to parenting stress levels were high family needs, low family adaptability and cognitive impairment in the child.
Conclusions   The results confirmed the individuality of families, and that individual characteristics of coping and feeling in control, together with family support and cohesion, are associated with variation in amount of stress experienced in parenting a child with cerebral palsy.     

Parental education and child health: evidence from a schooling reform

This paper investigates the impact of parental education on child health outcomes. To identify the causal effect we explore exogenous variation in parental education induced by a schooling reform in 1947, which raised the minimum school leaving age in the UK. Findings based on data from the National Child Development Study suggest that increasing the school leaving age by 1 year had little effect on the health of their offspring. Schooling did however improve economic opportunities by reducing financial difficulties among households.     

What parents find important in the support of a child with profound intellectual and multiple disabilities

Background The importance of a partnership between parents and professionals in the support of children with disabilities is widely acknowledged and is one of the key elements of ‘family‐centred care’. To what extent family‐centred principles are also applied to the support of persons with profound intellectual and multiple disabilities (PIMD) is not yet known. Aim The purpose of this exploratory study was to examine what parents with a child with PIMD find important in the support of their child. In addition, we examined which child or parent characteristics influence these parental opinions. Method In total, 100 parents completed an adapted version of the Measure of Processes of Care. Mean unweighted and weighted scale scores were computed. Non‐parametric tests were used to examine differences in ratings due to child (gender, age, type and number of additional disabilities, type of services used and duration of service use) and parent characteristics (gender, involvement with support and educational level). Results Parents rated situations related to ‘Respectful and Supportive Care’ and ‘Enabling and Partnership’ with averages of 7.07 and 6.87 respectively on a scale from 1 to 10. They were generally satisfied with the services provided, expressed in a mean score of 6.88 overall. The age of the child significantly affected the scores for ‘Providing Specific Information about the Child’. Parents of children in the ‘6–12 years’ age group gave significantly higher scores on this scale than did parents of children in the ‘≥17 years’ age group (U = 288, r = ?0.34). Conclusion This study shows that parents with children with PIMD find family‐centred principles in the professional support of their children important. Although the majority of parents are satisfied with the support provided for their children, a substantial minority of the parents indicated that they did not receive the support they find important.     

Parental bargaining, health inputs and child mortality in India

The primary objective of this paper is to examine the relationship between the status of women in the household, the use of health care (demand for prenatal care and hospital delivery) and child mortality in India. Parents care about the health of their children but cannot directly affect child health by their actions. Instead they can, through their actions, control the use of health inputs. I jointly estimate the decision to use prenatal care, the decision to deliver the baby in hospital and child mortality. The estimation methodology allows us to account for unobserved heterogeneity and self-selection in the use of health inputs. The estimation results show that: (1) a woman's education has a stronger effect on health care usage relative to that of her husband; (2) a woman's control over household resources (ability to keep money aside) has a significant effect on health care usage; (3) both prenatal care and hospital delivery significantly reduces the hazard of child mortality; and (4) not accounting for unobserved heterogeneity and self-selection in the use of health inputs results in under-estimation of the effect of health inputs on child mortality.     

Mental health outcomes among parents of a child who has a developmental disability: Comparing different types of developmental disability

BackgroundThere is very little information on the effects of different types of developmental disability on the mental health of parents of children who have a DD.ObjectiveThis paper compared the mental health of parents of children with Autism Spectrum Disorder (ASD), Down syndrome, Fetal Alcohol Syndrome (FAS) and other types of DD.MethodsA cross-sectional design was used to examine population-level administrative health data for mental health outcomes in cohorts of fathers and mothers of children with four different types of a DD. As well as type of DD, additional variables were examined, these included: sex of the parent, age of the parent at birth of the child with the DD, income, sex of the child with the DD, number of children in the family and place of residence.ResultsFor both fathers and mothers odds of a diagnosis of depression or another mental health problem were associated with type of DD. Parents of children with FAS experienced the greatest odds of a depression or other mental health diagnosis. Odds of a diagnosis for fathers were associated with low income. Odds of a diagnosis for mothers were associated with the sex of the child with the DD.ConclusionsThese findings are important for understanding families which include a child with a DD, as a guide for future research, and for developing effective programs and services for these parents.     

Parental education and child health: intracountry evidence.

This paper examines a wide range of evidence on the relationship between parental education and child health. Ideally, measures of child nutritional status, morbidity and mortality would have been included, but very few studies on morbidity were found which included education. The data reviewed here indicate that maternal education is closely related to child health measured either by nutritional status or by infant and child mortality. The effect of father's education on infant and child mortality appears to be about one half that of mother's education. The exact mechanisms through which education acts to affect child health are unclear. Better nutrition among the children of the more educated has been well-documented here, but it is unclear to what extent these effects result from improved knowledge and to what extent from higher income. The analysis does suggest that income differences cannot explain all the effect or perhaps even as much as half.     

The contacts which families and children with learning disabilities have with health and social services

This study summarises all the documented service inputs which families who had a child classed as having learning disabilities, received from one community Health and Social Services Trust in Northern Ireland during the 12 month period April 1996 to March 1997.

Using data obtained from three computer-based recording systems used in Northern Ireland - Child Health Record (Module V); L-CID and Soscare - this paper documents the extent and type of service provision for this population. In all, eleven different health professionals were involved while social services offered a further five service inputs. However the services provided varied across different age groupings of children and severity of the disability. Similarities and differences are noted between the Trust's services and those reported in a national U.K. survey of parents with disabled children.

Four key issues are discussed in the light of the Children (N.I.) Order: the development of a common database for this population; the criteria used to determine which children receive a service and those who do not; the co-ordination of service inputs; and the failure of present computer systems to record the outcomes of service inputs.