A Review of Child and Family Characteristics Related to the Use of Respite Care in Developmental Disability Services

This article reviews the literature on child and family characteristics that influence the use of respite care among families who have a child with a developmental disability. On the child side, these characteristics include severity of disability, level of required care, presence of challenging behaviors, and communication difficulties. On the family side, relevant factors include level of family stress, access to support systems, and family size. In some cases, marital status may also influence the decision of a parent to make use of respite care. Knowledge of these factors would seem crucial for effective planning and organization of respite care.     

Navigating disability and related services: stories of immigrant families

Cultural beliefs, values, language differences, and unfamiliar educational infrastructures and practices can impact immigrant parents’ capacity to support their children with disabilities in their new country. This study presents perspectives of disability and experiences with special education services based on interviews with eight immigrant parents of children with disabilities from four countries. Results indicate that the process for accepting, or not accepting, that their child has a disability differed across cultural contexts. Additionally, immigrant parents encounter diverse labelling practices and have varying levels of participation in special education services. Moreover, immigrant families who are refugees have differential access to services and a more limited cultural perspective of their heritage country than families who came to the USA directly from their heritage country. These results can assist professionals in rethinking policies and practices to more effectively establish partnerships with culturally and linguistically diverse families.     

Acculturation of Asian Indian parents: relationship with parent and child characteristics

Culture serves as a guiding framework to parents while rearing their children. However, when parents immigrate from one culture to another, they have to negotiate the conflicting demands and values of the two cultures when making decisions about child rearing. The present study investigated various aspects of parenting demonstrated by first-generation Asian Indian immigrant parents of young children. The study aimed at understanding the relationship between acculturation and various parental and child characteristics such as parenting stress, perceived social support, reasons for migration, duration of stay in the USA, and child's age and gender. No significant correlations were found between acculturation (measured through ethnic society immersion – ESI and dominant society immersion – DSI), parental stress, and social support. Parental scores on ESI were associated with whether or not they had relatives residing in the USA, whether or not they had plans to go back to India, and the age and gender of their child. Parental scores on the DSI were associated with their age and duration of their residence in the USA. Limitations of the study and policy implications of the findings are discussed.     

Stress and the social determinants of maternal health among Puerto Rican women: a CBPR approach

This qualitative research project explores how poverty, the built environment, education, working conditions, health care access, food insecurity and perceived discrimination are experienced by Puerto Rican Latinas through the course of their lives. Five focus groups were conducted with the primary objective of documenting community experiences and perspectives regarding: 1) stress, including perceived discrimination based on race/ethnicity (racism); 2) the impact of stress on Puerto Rican women of reproductive age, their families, and/or their community; and 3) stressors that affect maternal health. Focus groups were conducted in English and Spanish in the two cities with the highest rates of premature birth and low infant birthweight in the state of Connecticut. Focus group findings indicate that participants perceived poverty, food insecurity, lack of access to quality education, and unsafe environments as significant life stressors affecting maternal and child health.     

Children's delayed development and behavior problems: impact on mothers' perceived physical health across early childhood

Mothers of children with developmental delays may experience poorer psychological well-being than other mothers; however, little research has examined how delayed development in children might predict mothers' perceived physical well-being. Children with delayed development manifest heightened behavior problems, which may negatively affect maternal well-being. We examined the associations between developmental delay and behavior problems at child age 3 and mothers' self-perceived physical health at child ages 3, 4, and 5, in families of 218 children with and without developmental delays. The study sample comprised 218 families from central Pennsylvania and Southern California, USA who were recruited through community agencies that provide diagnostic and intervention services for individuals with development difficulties. We found that mothers of children with delayed development at age 3 reported poorer concurrent and later physical health than mothers of children with typical development. Broadening the analyses to include not only child development status (delayed development versus typical development) but also child behavior problems at age 3, only child behavior problems and the interaction of development status and behavior problems, but not development status itself, predicted maternal health. Early child behavior problems contributed to later maternal health above and beyond early maternal health, suggesting a possible causal association between child behavior problems and mothers' physical health. The relation between child behavior problems and maternal health was moderated by mothers' parenting stress and mediated by depressive symptoms. Mothers of children with both delayed development and high behavior problems are a particular risk group that may be especially in need of early intervention. Further research should examine the behavioral and biological pathways by which these child-related stressors influence mothers' physical health.     

Parent Stress and Perceptions of Language Development: Comparing Down Syndrome and Other Developmental Disabilities

This study extended research on the Down syndrome advantage by examining differences in parent stress and parent perceptions of language development between 29 parents of young children with Down syndrome and 82 parents of children with other developmental disabilities. Parents of children with Down syndrome reported lower levels of total stress, child‐related stress, and stress surrounding the parent–child interaction. Parents of children in both groups reported that they felt successful in their ability to affect their children's communication development but did differ on perceptions of difficulty such that parents of children with Down syndrome perceived their children's communication difficulties as less severe despite the children exhibiting similar language skills. Finally, after accounting for potential explanatory confounding variables, child diagnosis remained a significant predictor of parent stress and perceptions of language development. Results highlight the importance of considering etiology when assisting families raising a child with a disability.     

Pregnancy recommendations from women with intellectual and developmental disabilities to their peers

BackgroundAs recent as the mid-twentieth century, eugenics practices on women with intellectual and developmental disabilities were commonplace. Deinstitutionalization has led to an increasing proportion of women with intellectual and developmental disabilities living in the community and becoming pregnant. Previous research has reported barriers to maternal health care (i.e., perceived provider stigma, inadequate communication, stress surrounding child protective services involvement, and financial strain). Research shows that this population is at increased risk of adverse outcomes including preterm delivery, low birth weight babies, and maternal mortality.Objective/hypothesisThis study aimed to explore recommendations from mothers with intellectual and developmental disabilities for other women to potentially improve pregnancy experiences for this population.MethodsWe conducted semi-structured individual interviews among 16 women with intellectual and developmental disabilities. Data were coded using a content analysis process and iteratively analyzed using inductive and deductive techniques to determine emergent themes.ResultsParticipants offered recommendations for navigating pregnancy to their peers who are pregnant, or thinking about becoming pregnant. Themes included: (1) planning for birth; (2) advocating at the point-of-care; (3) seeking supports and services; (4) interacting with child protective services; (5) communicating with providers; and (6) exhibiting resilience.ConclusionOur study highlights recommendations for improving pregnancy experiences of women with intellectual and developmental disabilities. Informed by the lived pregnancy experiences of our participants, these recommendations can inform clinician training, new guidelines, and services to support and improve pregnancy experiences for women with intellectual and developmental disabilities.     

Randomized Controlled Trial of Back School With and Without Peer Support

The aim of this trial was to determine whether social interaction between patients with long-lasting nonspecific back pain reduces subjective or objective disability. The participants were selected from persons visiting an occupational health care unit because of back pain. After a clinical examination in a university clinic, subjects without a specific diagnosis and having no disabilities preventing active rehabilitation were selected for study. The subjects (n = 108) were randomized into treatment (n = 54) and control groups (n = 54). Altogether 18 study groups, 9 treatment groups and 9 groups for controls, were formed. Before starting the back schools altogether 15 subjects dropped out. Both the treatment groups (n = 47) and the controls (n = 46) attended a back school consisting of 10 lessons and demonstrations supervised by a physiotherapist. The participants in treatment groups, but not the controls, had physical exercise and social intercourse with other members within the group. The clinical examination was repeated after 6 and 12 months. Both the treatment groups and the controls showed improvement in perceived functional capacity (assessed with Oswestry disability questionnaire) and in perceived life quality (assessed with 15D score). At the 6-month follow-up life quality had improved statistically significantly more among the participants in treatment groups than among the controls, and at the 12-month follow-up the Oswestry index showed corresponding improvement. Among subjects suffering from nonspecific back pain, social support improves the results of active rehabilitation.     

Children enabling change: A multicultural, participatory, community-based rehabilitation research project involving chinese children with disabilities and their families

A participatory, action-oriented research approach was used in developing community-based services for children with disabilities in an urban Chinese community. A review of the literature and discussions with community members revealed that Chinese families who have a child with a disability experience the double barrier of disability and culture. An action research paradigm was developed that would both identify existing barriers for families and provide opportunities for overcoming these obstacles through the research process. A total of 94 persons in the Chinese community were interviewed, including family members caring for a child with a disability and community members with no direct contact with a person with a disability. Results from the interviews revealed negative attitudes towards children with a disability grounded in cultural beliefs regarding a child’s capacity to contribute to the family, a widespread use of traditional healers in conjunction with a family doctor or hospital, and a lack of knowledge on available community support agencies. The findings of the research are discussed with the aim of building on community strengths to reinforce existing family support programs and involve families and children with a disability in such processes in a culturally appropriate manner.     

Ambiguous Loss in Families of Children With Autism Spectrum Disorders*

Abstract: Learning that a child has a lifelong developmental disorder is stressful and challenging to any family, yet it is clear that some families adapt and adjust more readily than others. In this article, it is proposed that a diagnosis of an autism spectrum disorder (ASD) is especially likely to be experienced as ambiguous loss. Interviews with mothers of children with ASDs are used to identify whether mothers express feelings of ambiguous loss when talking about their child. Then, a specific hypothesis derived from ambiguous loss theory—that higher levels of identity ambiguity in mothers are linked to higher levels of depressive symptoms and perceived stress independent of the severity of the child’s diagnosis—is tested and found to be supported. Recognition of ambiguous loss in families of children with ASDs would help professionals provide more effective support and assistance to families.     

A baseline evaluation of family support programs

This paper presents a baseline evaluation of four demonstration family support programs located in communities identified as having a disproportionate number of families at risk for malfunctioning. In this baseline evaluation, a one year cohort of 422 family support participants were assessed along key dimensions of parenting known to contribute to child well-being and potentially to the incidence of child abuse or child neglect. These dimensions include parents' attitudes toward child rearing, knowledge of child development, level of perceived social support, and level of depression.Black participants and teenage parents had more punitive attitudes toward child rearing, less knowledge of child development, and less perceived social support than white or older parents. Overall, attitudes, knowledge, level of perceived social support and depression are inter-related in accordance with previous clinical observations and developmental theory, e.g., depressed parents are less knowledgeable, more punitive and have less support than nondepressed parents. The results of the baseline evaluation suggest that the demonstration projects are successful in reaching some subgroups of families at risk for parenting problems.Janet Reis, Ph.D. is Assistant Professor, Center for Health Services and Policy Research, 629 Noyes Street, Northwestern University, Evanston, Illinois 60201. Linda Barbera-Stein, Ph.D. is Assistant Research Professor, Center for Health Services and Policy Research, Northwestern University. Elicia Herz, Ph.D. is Assistant Research Professor, Center for Health Services and Policy Research, Northwestern University. John Orme, Ph.D. is Assistant Professor, School of Social Work, Louisiana State University. Susan Bennett, M.A. is Research Associate, Center for Urban Affairs and Policy Research, Northwestern University.This work was supported in part by a contract from the Illinois Department of Children and Family Services and the Pittway Charitable Fund to the Center for Health Services and Policy Research, Northwestern University. Special thanks are given to Dr. Edward Zigler for his early guidance on this project. An earlier version of this work was presented at the American Public Health Association, Washington, D.C., November 1985.     

Perceptions of people with mild intellectual disability and their family members about family-based social capital in the Netherlands

Families play an important role in the lives of people with intellectual disability as they do for everyone. However, little research has addressed the views of people with intellectual disability about their families by using self-report. Individual family members may hold different views about their family relationships. Therefore, we used a social capital theoretical perspective to examine (a) how perceptions of people with mild intellectual disability (MID) about their family support networks compare to those of their family members and (b) what factors are associated with any diverging perceptions. Randomly selected participants with MID (n = 111) and their family members (n = 111) were interviewed individually at their homes using the Family Network Method—Intellectual Disability (FNM-ID). The FNM-ID examines how people define their family groups and how they perceive existing supportive relationships within this group. The findings showed that participants with MID perceived that they had somewhat denser family networks (i.e., bonding social capital) than family members perceived them to have and were more likely to report bridging social capital. They reported more relationships that involved them providing support to family members. This difference in estimation was greater when the participant with MID displayed higher levels of externalizing behaviour problems. They also perceived more reciprocity in their relationships with family. No differences were found in the estimated numbers of significant family members and relationships in which support was received. It is concluded that people with MID and their family members have different perceptions on several aspects of the family support network. Family professionals and services should seek the views of people with intellectual disability and their family members when carrying out assessments or organizing supports.     

A Qualitative Study to Understand Positive and Negative Child Feeding Behaviors of Immigrant Asian Indian Mothers in the US

To understand current practice of child feeding behaviors, and underlying factors influencing these practices in Asian Indian mothers, qualitative in-depth interviews were conducted with 27 immigrant Asian Indian mothers of children ages 5–10 years. Using the theory of planned behavior as a guiding framework, child feeding behaviors employed, beliefs about the outcomes of feeding behaviors, perceived ease or difficultly in practicing feeding behaviors, and social norms were explored during the interviews. Thematic analysis was conducted using coding and display matrices. Mothers were motivated by nutrition outcomes when practicing positive and negative controlling feeding behaviors. Outcomes related to preservation of Indian culture and values also influenced feeding behaviors. Pressuring to eat was often practiced despite the perception of ineffectiveness. Use of food rewards was found, and use of TV to control children’s food intake despite the clear understanding of undesirable nutrition outcomes was a unique finding. Asian Indian mothers need effective child feeding strategies that are culturally appropriate. Integrating cultural beliefs in nutrition education could help support existing motivation and behavior modification.     

Is the Influence of Social Support on Mental Health the Same for Immigrants and Non-Immigrants?

The association between social support and mental health across immigrant groups were examined in this study. A population-based sample was extracted from a 2009/10 Canadian community health survey. Self-reported mood or anxiety disorders and a standardized social support scale were used as outcome and explanatory variables. The association between these variables was measured using logistic regression controlling for sex, age, marital status, education, self-rated health and perceived stress. Stratified analyses were performed to test if the strength of association differed by immigrant status. In comparison with individuals who had moderate levels of social support, individuals with low social support had higher odds of reporting mental disorders and this association appeared strongest among recent immigrants. Using the same comparison group, individuals with high social support had lower odds of reporting mental disorders and this association appeared stronger among long-term immigrants. Findings were discussed within the context of immigration stress and acculturation strategies.     

Preschoolers with autism spectrum disorders: the impact on families and the supports available to them

As more children are diagnosed at a younger age with Autism Spectrum Disorders (ASD), a new population of families is growing requiring services. Little is known about their characteristics and need for support. Instead, past research has tended to focus on specialist assessments and interventions. Over 100 parents with a child aged under five years of age were interviewed individually at home using a semi‐structured questionnaire and standard rating scales. Although all children had been given a confirmed diagnosis of ASD at specialist community clinics, wide variations existed in the children’s developmental difficulties and in the characteristics of their families. A majority of families reported marked impacts on family life with increased levels of parental stress. However, the amount and type of professional support available to families were not related to child or family characteristics. Family‐centred intervention and support services are required and they should be available to parents irrespective of their child having a confirmed diagnosis.     

Preschoolers with autism spectrum disorders: the impact on families and the supports available to them

As more children are diagnosed at a younger age with Autism Spectrum Disorders (ASD), a new population of families is growing requiring services. Little is known about their characteristics and need for support. Instead, past research has tended to focus on specialist assessments and interventions. Over 100 parents with a child aged under five years of age were interviewed individually at home using a semi-structured questionnaire and standard rating scales. Although all children had been given a confirmed diagnosis of ASD at specialist community clinics, wide variations existed in the children's developmental difficulties and in the characteristics of their families. A majority of families reported marked impacts on family life with increased levels of parental stress. However, the amount and type of professional support available to families were not related to child or family characteristics. Family-centred intervention and support services are required and they should be available to parents irrespective of their child having a confirmed diagnosis.     

Issues in multidisciplinary teamwork for children with disabilities

This paper presents a review of key issues surrounding multidisciplinary work in relation to the care of children with disabilities and their families. The discussion is based on experience of working in a child development team and research visits to teams around Britain at the beginning of the 1990s. An outstanding feature of child disability services is their organizational diversity. The research found that district interagency planning groups were a rarity, as were multi-agency management groups for teams. Thus it was rare for teams to have clear lines of external accountability. Similarly leadership and management structures within the teams had a profound influence on their effectiveness. Issues are highlighted for identifying good practice and for further development of services.     

John Henryism, self-reported physical health indicators, and the mediating role of perceived stress among high socio-economic status Asian immigrants

This study examined the relationship between John Henryism (a strong behavioral predisposition to engage in high effort coping with difficult barriers to success) and self-reported physical health among high socio-economic (SES) status Asian immigrants to the USA. Cross-sectional data were collected from a community sample of 318 self-identified Chinese and Indian immigrants aged 18-73, averaging 10.2 yr lived in the US. In addition to the John Henryism Active Coping Scale, health status was measured using ordinal ratings of global self-rated health, somatic symptoms and physical health functioning. We also evaluated whether perceived stress would explain the relationship between John Henryism and health. Controlling for demographic factors, regression analyses showed that higher John Henryism significantly predicted better self-rated health and physical functioning, and fewer somatic symptoms. These relationships were significantly and fully mediated (for physical functioning and somatic symptoms) or partially mediated (for self-rated health) by lower perceived stress. Results suggest that John Henryism relates to better health among high SES Asian immigrants in part by reducing perceived stress. To better understand and improve health in all racial/ethnic groups, especially racial minorities and immigrants, more research is needed on John Henryism and perceived stress as important psychosocial mechanisms intervening between environmental exposures and health outcomes.     

An evaluation of the efficacy of a preventive intervention for 4th–6th grade urban children of divorce

This study evaluates the efficacy of the Children of Divorce Intervention Program (CODIP), a preventive intervention based on social support and coping skills, for 4th–6th grade urban children of divorce. Structure and content of the 14 group sessions were tailored to the developmental level and sociocultural make-up of the target sample. Pre-post comparisons of demographically matched groups of 57 CODIP participants, 38 non-program divorce controls and 93 children from non-divorced families revealed improvements on parent, child and group leader measures of adjustment. Limitations of the study and directions for future research are discussed.