Parent stress and satisfaction with early intervention services for children with disabilities – a longitudinal study from Germany

This study assessed parent–child and family-related stress at two points of time and analysed relationships between stress, child and family characteristics and parent satisfaction with early intervention services. In Germany, 125 parents of young children with intellectual disabilities, hearing impairment or visual impairment responded to a questionnaire. Eighty-seven parents agreed to participate in the second survey. Results indicated that (a) perceived parenting competence is associated with general self-efficacy and satisfaction with professional support, (b) parent–child interactional stress increased with time, specifically in families with children with intellectual disability or visual impairment, (c) the level of satisfaction with amount and quality of family support was low in a considerable subgroup of parents, (d) regression analyses support predictive relationships among parent–child stress, family-related stress, perceived parenting competence and satisfaction with early intervention services.     

Mothering in Families With and Without a Child with Disability

This paper describes some features of a study which compares and contrasts mothers’ perceptions of their family life in three different family environments, those without a child with disability and those families who live with a child with an intellectual or physical disability. All families have children in the middle childhood period allowing the mothers to reflect on earlier experiences and changes in their family life. Mothers’ psychological characteristics are explored in terms of the coping resources they utilise when meeting stressful life situations in their family and how their personal resilience and vulnerability is related to these individual coping resources.     

Children with disabilities in the child protective services system: An analog study of investigation and case management

ObjectiveThe study used a series of vignettes to investigate how the presence of three disabilities (cerebral palsy, intellectual disabilities, emotional/behavioral disabilities) affects the processes and outcomes of child abuse investigations at two levels of child injury severity (moderate, severe).MethodSeventy-five CPS case workers completed study surveys and answered questions in response to a series of eight vignettes.ResultsThis study revealed differences in the responses of CPS case workers when the alleged victim of physical abuse had a disability. Children with disabilities were more likely than children without disabilities to be seen as having characteristics that contributed to their abuse. Most CPS workers felt at least some empathy with abusive parents; empathy was highest when the children had emotional/behavioral disabilities. Services recommended for families of children with disabilities were more likely to be child-focused. Parent-focused services, such as individual counseling and adult anger management, were more likely to be recommended for families of children without disabilities. In general, differences among disability groups and between cases involving children with and without disabilities were more pronounced when the children's injuries were less severe. Even with more severe injuries, such as a concussion or broken bones, the CPS workers still responded differently depending on the disability status of the child victims.ConclusionsRecommendations are made concerning the utilization of investigation teams that include disability specialists and the need for further disability-related training for CPS case workers.Practice implicationsThere is a strong need for training related to disability, with an emphasis on attitudes as well as knowledge and skills. The training should include examples of healthy family functioning and positive aspects of parenting a child with a disability to counteract the prevailing perception of disability as a cause of chronic stress and dysfunction; identification of broader ecological contexts in which these families live, including social response to disability and the disability-related service system and; strategies for disentangling the signs of abuse from characteristics of the disability. Interdisciplinary teams should include members from disability-related fields to share expertise and increase communication between systems.     

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.     

Child abuse and neglect in military and civilian families

Patterns and correlates of child maltreatment were investigated both within the military and between military and civilian families. The results revealed that certain patterns and correlates emerged within the military that were significant. For example, loss of control and lack of tolerance were two major reasons given for abuse by military perpetrators . Also the stresses of family discord, new baby and continuous child care along with relocation and isolation played important roles in the occurrence of abuse within the military. When comparisons were made between military and civilian families, some differences were discovered but many more similarities were found. As an example, the analysis revealed that the stress of broken family was a more important correlate of abuse in civilian than in military cases of abuse. For all the other kinds of stresses (e.g., family discord and isolation), however, one was no more important for military than for civilian perpetrators . Although the patterns and correlates of child abuse and neglect may not be unique to the military, this does not minimize the importance of the problem in the armed forces. Programs of treatment and prevention must be developed and implemented to fit the needs and life styles of military families.     

The Effect of an Education Program for Mothers of Children with Autism Spectrum Disorder in Jordan

There are few support services for parents of children with a disability in Jordan. The present exploratory study investigated whether the provision of an education program in Jordan for mothers of children with Autism Spectrum Disorder increased mothers’ understanding of their child’s behaviour, improved the mothers’ coping skills, and reduced their stress levels. Following the education program, the mothers reported a statistically significant reduction in stress levels, an increase in coping skills, and an improvement in mother-child interaction. Compared to fathers, mothers’ stress levels were significantly higher and their coping skills were significantly lower. The outcomes have valuable implications for interventions for families with a child with ASD living in Jordan or in other Arabic countries.     

Development of infants with disabilities and their families: implications for theory and service delivery.

This Monograph presents the results of a nonexperimental, 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 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. Results of data analyses suggest new perspectives on the study of early childhood disability. The implications of the findings for developmental theory and social policy are discussed.     

Child care research: a clinical perspective

Two new studies on day care suggest that young children demonstrate increased aggressive behavior in relationship to time spent in day care and increases in cortisol levels in relationship to full-time, group-oriented, out-of-home care. These observations can be more fully understood in a clinical context that looks at individual differences in children, families, and child care environments. Factors likely to increase risk include sensory processing and modulation challenges; family stress; and lack of sensitive, nurturing interactions associated with less high-quality child care. Because 85% to 90% of current day care is not considered to be of high quality, individual families that can provide high-quality care need to explore carefully their options to see if it is possible to provide direct nurturing care for their infants and young children for at least half of the day.     

Stress and coping in families with deaf children

More than 90% of deaf children are born to hearing parents who experience stress, not only in respose to the initial diagnosis, but also in adapting to the unique needs of their deaf child. This article is a selective literature review summarizing information from three fields in order to broaden our understanding of family adaptation to deafness. Discussion includes (1) psychology's model of individual stress and coping (2) family science's model of family stress management, and (3) literature on family adjustment to disability. The last part of the article traces the development of professionals' understanding of the reciprocal influences between deaf children and their families and describes recent research indicating that the impact of deafness on families is complex and variable. The final conclusion is that adoption of a family stress and coping paradigm would inform discussion of current issues in deafness, such as cochlear implants and bilingualism/biculturalism.     

Factors affecting turnover among family child care providers: A longitudinal study

The high turnover rates evident among family child care providers undermine the quality of care provided to children. In this study, we followed 57 family child care providers longitudinally to identify precursors of turnover. Job stress, education, and training directly affected turnover. Providers most likely to leave the profession were more educated, less trained, and reported higher levels of stress. Training and the presence of the provider's own young children indirectly affected turnover through their relationship to job stress. Providers who cared for their own preschool children experienced higher levels of job stress. In contrast, training was associated with lower job stress, but only for less educated providers. The presence of the provider's own young children and training also were associated with greater job satisfaction, but job satisfaction was unrelated to turnover. Finally, there was a curvilinear relationship between job tenure and job stress and, to a lesser extent, turnover. Providers who had been caring for children between 2 and 8 years reported the highest levels of job stress and turnover, although turnover rates were also high during the first 2 years of beginning family child care.     

At home with disability: one family’s three generations narrate autism

We examined the lived experiences of a Cypriot family with a young child with autism. Semi‐structured interviews with parents, siblings, and extended family members across three generations and observations of the family’s daily activities were the primary data‐generating methods. Critical events related to the disability diagnosis, the mother’s decision to undertake a significant role in the child’s education following negative interactions with professionals, and the family’s daily accommodations to the child’s needs emerged in narratives of multiple participants. Family narratives reflect the polyphony of experiences and responses shared by participants. The study illuminates the complexities of this experience and offers opportunities to rethink the interplay of disability, family, and culture in the context of research and practice.     

A Prospective Sequential Analysis of the Relation Between Physical Aggression and Peer Rejection Acts in a High-Risk Preschool Sample

Research Findings: Early Head Start home-based programs provide services through weekly home visits to families with children up to age 3, but families vary in how long they remain enrolled. In this study of 564 families in home-based Early Head Start programs, “dropping out” was predicted by specific variations in home visits and certain family characteristics. It also was negatively related to several targeted program outcomes. Home visits to dropout families focused less on child development, were less successful at engaging parents, and had more distractions. Dropout families had more risks and changes of residence, were more likely to be headed by a single mother, and were less likely to have a mother with poor English skills or a child with a documented disability. Practice or Policy: Home visiting programs may be able to reduce dropout rates, and thereby increase the duration of services to each family, by keeping home visits engaging and focused on child development and also by individualizing to the specific needs of families at risk for dropping out. To keep families involved longer, home visiting programs should consider (a) planning home visits that are longer, more engaging for both parent and child, scheduled at a time when there are fewer distractions for the family; and (b) spending the majority of time on child development activities and topics.     

Identified spouse abuse as a risk factor for child abuse

CONTEXT: There are limited data on the extent to which spouse abuse in a family is a risk factor for child abuse. OBJECTIVE: To estimate the subsequent relative risk of child abuse in families with a report of spouse abuse compared with other families. DESIGN: Cohort study. SETTING: Analysis of a centralized US Army database PARTICIPANTS: Married couples with children with at least one spouse on active duty in the US Army during 1989-95. MAIN OUTCOME MEASURES: The US Army Family Advocacy Program's Central Database was used to identify child and spouse abuse. The exposure was an episode of identified spouse abuse and the main outcome was a substantiated episode of subsequent child abuse.RESULTS: During the study period of an estimated 2,019,949 person years, 14,270 incident child abuse cases were substantiated. Families with an incident case of spouse abuse identified during the study period were twice as likely to have a substantiated report of child abuse compaired with other military families, rate ratio, 2.0, (95% confidence interval [CI] 1.9-2.1). Young parental age had the highest rate ratio, 4.9 (95% CI 4.5-5.3) in the subgroup analysis controlling for rank. Identified spouse abuse was associated with physical abuse of a child, rate ratio 2.4 (95% CI 2.2-2.5), and with sexual abuse of a child, rate ratio 1.5 (95% CI 1.3-1.7). Identified spouse abuse was not associated with child neglect or maltreatment, rate ratio, 1.0 95% CI 0.9-1.1) CONCLUSION: An identified episode of spouse abuse in a family appears to be associated with an increased risk of subsequent child abuse and serves as an independent risk factor. Therefore. care providers should consider the potential risk to children when dealing with spouse abuse.     

The role of parental expectations in understanding social and academic well-being among children with disabilities in Ireland

This paper draws on longitudinal data to examine the extent to which parents’ educational expectations shape academic development and changes in self-concept among young people with different types of disability. The analysis is based on the Growing Up in Ireland longitudinal study, which tracked 7423 children between the primary to secondary school years, 21% of whom were identified with one of four main disability types. Our conceptual framework assumes that parental expectations at age 9 will be influenced by both the child’s disability and child’s academic achievement at that stage, as well as being influenced by other factors such as parent’s own education, family economic vulnerability, family relationships and family structure. Therefore, we take these factors into account in tracing the consequences of parental expectations at age 9, on academic and social outcomes at age 13 after the transition to secondary education. Among young people with a disability, poorer self-concept at age 13 is partly explained by lower parental expectations, particularly for those with general learning and emotional/behavioural disabilities. Similarly, parental expectations are a significant influence on children’s academic outcomes and partly explain the effects of disability status on academic development. Parents’ beliefs about their children’s abilities have a strong influence on achievement and self-concept, raising important issues around the need to promote equality of opportunity, raising awareness of the educational opportunities available, promoting positive expectations and engagement with school and the importance of promoting a range of opportunities for achievement.     

Defining the family: towards a critical framework for families of children with disabilities

ABSTRACT

Family‐centred approaches are widely recognized internationally as the most ecologically appropriate way of working with families of children with disabilities. Pivotal in this approach is its focus upon the needs of the whole family, rather than only the needs of the child (with a disability). It places a significant emphasis on flexible and responsive transdisciplinary service delivery and upon parent choice and decision‐making. For the family‐centred approach to become truly effective, then, we must define what constitutes a family. Or rather ask families how they define themselves. Alongside an exploration of traditional and non‐traditional family roles, this paper challenges stereotypical notions of the family, and seeks to establish the family as the core element in any service team.     

Stress in Families of Young Children with Down Syndrome, Williams Syndrome, and Smith-Magenis Syndrome

This study examined whether stress levels differ in families of young children with three different genetic etiologies of mental retardation, and whether child characteristics associated with those genetic etiologies may help explain these differences. Participants were sixty families of young children with Down syndrome, Williams syndrome, and Smith-Magenis syndrome. All children were between the ages of 3 and 10 years. Parents completed Achenbach's Child Behavior Checklist, the Questionnaire on Resources and Stress-Friedrich edition, and a demographic questionnaire. Families of children with Down syndrome experienced significantly less Pessimism than the other two etiology groups and significantly less Parent and Family Problems than families of children with Smith-Magenis syndrome. The strongest predictor of Parent and Family Problems was maladaptive behavior in Smith-Magenis syndrome, younger age in Down syndrome, and both maladaptive behavior and younger age in Williams syndrome. Maladaptive behavior predicted Pessimism in families of children with Smith-Magenis syndrome, but none of the variables examined significantly predicted Pessimism in the other two syndromes. The importance of behavioral phenotype research is discussed for practitioners working with young children with mental retardation and their families.     

Personal Storytelling as a Medium of Socialization in Chinese and American Families

The goal of this study was to determine how personal storytelling functions as a socializing practice within the family context in middle-class Taiwanese and middle-class European American families. The data consist of more than 200 naturally occurring stories in which the past experiences of the focal child, aged 2,6, were narrated. These stories were analyzed at 3 levels: content, function, and structure. Findings converged across these analytic levels, indicating that personal storytelling served overlapping yet distinct socializing functions in the 2 cultural cases. In keeping with the high value placed on didactic narrative within the Confucian tradition, Chinese families were more likely to use personal storytelling to convey moral and social standards. European American families did not treat stories of young children's past experiences as a didactic resource but instead employed stories as a medium of entertainment and affirmation. These findings suggest not only that personal storytelling operates as a routine socializing practice in widely different cultures but also that it is already functionally differentiated by 2,6.     

Disability,Stigma and Otherness: Perspectives of Parents and Teachers

This qualitative study explored the perspectives of parents and teachers in the US with regard to the meaning and implications of disability in the context of schoolling, and of raising a child with a disability. The findings revealed broad conceptual differences in the perspectives of these two groups. Teachers’ beliefs were generally consistent with medical model perspectives on disability as biologically defined. Parents’ interpretations, more aligned with a sociocultural paradigm, were situated in the cultural meanings ascribed to disability and linked with issues of stigma, marginalisation and access. The findings also revealed the existence of master narratives on families of children with disabilities, entrenched in assumptions of pathological functioning and negative outcomes among these families. Implications for professional–family partnerships in the education of students with disabilities are discussed.     

A pilot study of early childhood mental health consultation for children with behavioral problems in preschool

This study reports the findings of a pilot demonstration project called Together for Kids, which used a mental health consultation model to address the needs of young children with challenging behaviors who are identified in preschool classrooms. The study was conducted in four preschool programs and one Head Start program serving children ages 3–5, including both private-pay families and those using public subsidies. Rates of significant behavior problems as assessed by preschool teachers using a standardized scale were high, with 34% of all children enrolled in preschool classrooms in these sites over a 3-year period identified at-risk of externalizing or internalizing problems. Classroom teachers, as well as individual children and families identified as at-risk, were provided services, including, classroom observation and teacher training, individual child assessment and therapy, family assessment and support, and referrals for other family needs. Analysis of outcomes for 47 children and families with externalizing behavior problems who received individualized consultation, compared to 89 control children, and analysis of outcomes of a matched group of 19 intervention and 19 control children, revealed that the intervention was associated with significant improvements in classroom aggressive and maladaptive behavior, and growth in adaptive behavior. Improvements in child behavior were associated with total hours of individual child services provided, and with improvements in child developmental skills. Significant reductions in the rate of children suspended or terminated from child care programs were also found. Implications for further development of models of early childhood mental health consultation are discussed.     

Mothers' Perceptions of Family Climate in Families with a Retarded Child

The aim of this study was to assess the family climate as perceived by the mothers of families with a retarded child compared with ‘regular’ families; mothers of 67 moderately mentally retarded and 69 non‐disabled children participated. Mothers with a mentally retarded child perceived the climate of their families as not encouraging such intense relationships in the area of expressiveness or as much personal growth in the areas of independence and recreation orientation as the contrast families. Results are discussed in terms of the theoretical significance of prolonged crises for the well‐being of the family, and practical implications.