A Longitudinal Study of Parental Stress and Support: From Diagnosis of Disability to Leaving School

Parental stress attributed to both a child with an intellectual disability and their youngest child without a disability was examined over a seven year period. Stress and support were also examined in relation to the life stages of disability diagnosis, starting school and completing school. Stress attributed to the child with a disability was greater than stress attributed to the youngest child without a disability and remained high over the seven year period, however, an increased level of stress was attributed to the child without a disability. In terms of life stages, diagnosis of intellectual disability in a child remained as the most stress‐inducing of the life events included in the study, however, most parents had also experienced heightened stress at the time their child started school, and also during the transition from school to work. The support parents found most helpful reflected their changing focus of worry over time. The implications and limitations of this study arc discussed.     

Competence is in the Eye of the Beholder: Perceptions of intellectually disabled child witnesses

This study examines mock jurors’ perceptions of a young witness according to whether or not he was described as having an intellectual disability. Our study examined perceptions of a child witness younger (five or seven years) than previously studied. Mock jurors (n = 71) viewed a short video excerpt of a boy recalling a personally experienced event, and then rated him across nine domains of eyewitness ability. The boy was described as either having an intellectual disability or typically developing. Participants rated the child more negatively on dimensions relating to cognitive competence, but not trustworthiness, when he was presented as having an intellectual disability. Participants also watched the child answer a series of suggestive questions; when described as having an intellectual disability he was rated as less accurate in responding to these. The findings have implications for the involvement of children with intellectual disabilities within the legal system.     

Prevalence and outcomes for parents with disabilities and their children in an Australian court sample

OBJECTIVE: The purpose of this study was to obtain sound prevalence and outcomes data on parents with disabilities and their children in statutory child protection proceedings. METHOD: The court files of all care and protection matters initiated by the statutory child protection authority and finalized in a 9-month period (n=285) at two Children's Courts in NSW, Australia were reviewed. RESULTS: Parents with disabilities featured in almost one-third of the cases (29.5%). Parental psychiatric disability was most prevalent at 21.8% followed by parental intellectual disability (mental retardation) at 8.8%. Significant associations were found between parental disability and court outcome with a disproportionately large number of children of parents with intellectual disability being made wards of the state. CONCLUSIONS: The findings demonstrate that parents with disabilities are significantly over-represented in statutory child protection proceedings and that the outcomes of these proceedings vary according to disability type.     

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.     

Agreement on Childhood Disability between Parents and Teachers in Vietnam

The purpose of the present study was to examine agreement on childhood disability among the teachers and parents of children with cognitive delays in Vietnam. The participants were 57 teachers in kindergarten programmes (for children 2 to 6 years of age), and 106 mothers and 93 fathers of the children attending these kindergarten programmes. The data were collected using the ABILITIES Index and a demographic information form. The results indicated that teachers rated the children’s level of functioning more severely, especially in the areas of intellectual disabilities and behaviour problems, than mothers and fathers. Logistic regression that examined the factors that predicted the agreement and disagreement among parents and teachers revealed that teachers and parents were more likely to agree when the child’s disability was genetically related or physical. Screening, diagnosis and treatment issues can become more challenging for children with intellectual disabilities who do not have such physical and genetic conditions, especially when the agreement between parents and professionals on the conditions of the children is low.     

Review of Research on Parent Training for Parents with Intellectual Disability: methodological issues

A computerised search was conducted in May 1995. PsycLit and Eric databases (1974‐1995 and 1965‐1995, respectively) were consulted. A total of 27 references were listed under the topic of Parent Training Program for Parents with Intellectual Disability. However, the results of the review indicated that only one reference was pertinent which was on basic child care skills training for mothers with mean IQ 74 and the mothers who were regarded as having provided neglectful child care. Through personal communication, 10 studies on parent training programs for parents with intellectual disability were obtained and also reviewed. Eight studies applied single‐subject design; two used quantitative methods; one used both single subject design and statistical analysis. Among the 10 studies, one was basic child‐care skills training, two were decision‐making in child rearing; five of them were safety and related topics, and three were concerned with mother‐child interaction. A total of four studies included mothers with normal IQ as a comparison or to serve as a norm. As a whole, research in parent training programs for parents with intellectual disability is still in its infancy. Much more work needs to be done in the area of basic child care skills, comparative studies, identifying situational and subject characteristics for the best outcome of training, and programming to facilitate generalisation.     

Parental Explanatory Models of Child’s Intellectual Disability: a Q Methodology Study

This study with families caring for an individual with an intellectual disability in a mid-sized Indian city explored the diverse explanatory models that parents constructed of causes, preferred treatment approaches and perceived social effects of their child’s intellectual disability. Seventeen mothers and three fathers rank ordered 48 disability related statements and participated in a qualitative interview. The intercorrelations and factor analysis of participant sorts helped to generate three parental explanatory models which were named religious resilience, in search of treatment and social change, and it is a burden to bear. The three models extracted 23%, 20% and 9% variance respectively. Interpretations based on factor arrays, consensus and differentiating statements, and qualitative interviews indicated that the first explanatory model utilised religion and spirituality to positively frame their child’s intellectual disability. The second explanatory model rejected religious notions and did not dwell on the cause of disability, but rather focused on optimal rehabilitation of individuals with an intellectual disability. The third model was characterised by maladaptive religious attributions and rehabilitation approaches.     

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.     

Seeking inclusive education: disrupting boundaries of ‘special’ and ‘regular’ education

The present paper is part of a larger study carried out in North Queensland, Australia, between 1999 and 2001. The original study focused on the perceptions of 15 women who each have (or had) a child who was medically, educationally and socio‐culturally constituted as having a disability. Qualitative methods were used for research design and to gather data. Poststructural and feminist perspectives were added to provide additional methods of data analysis. The primary focus in this paper is the spatiality of inclusive education with/in the discursive site of (special) education. It also considers the binary of regular/special education in relation to the spaces of educational discourse through the perspectives of the mothers, covering a temporal frame of 40 years. The mothers’ perceptions provide a historical lens on the changes that occurred in special education in North Queensland over this time, while at the same time offer an insight into the spaces disability occupies in education discourse.     

A mindfulness parent well-being course: evaluation of outcomes for parents of children with autism and related disabilities recruited through special schools

Parents of children with intellectual disabilities and/or autism have been shown to experience higher levels of distress than other parents. Despite such data having been available for several decades, the evidence base for psychological interventions to support parental well-being is small. Recent data suggest that both mindfulness and acceptance processes are associated with decreased psychological distress for parents of children with intellectual disability and/or autism. In addition, some controlled evaluations of mindfulness-based interventions for these parents have resulted in positive outcomes for mothers in particular. In the present study 18 mothers and 3 fathers were recruited via special schools who then attended a Mindfulness Based Well-Being for Parents (MBW-P) group over eight weeks. Parents completed questionnaire measures before and at the end of the course. Statistical analysis showed significant reported increases in mindfulness and self-compassion, and reduced general stress. Parents also reported reductions in anxiety and depression, although these changes were not statistically significant. No significant reductions in their child’s behaviour problems or increases in the child’s prosocial behaviour were found. Parents also reported high levels of satisfaction with the course. These preliminary data suggest that further research studies testing the effectiveness of the MBW-P course are warranted.     

Educating Pupils with Intellectual Disabilities in England: Thirty years on

In April 1971, responsibility for the education of all children with intellectual disabilities in England and Wales passed from health to education authorities at national and local level. From that date, no child could be declared to be "ineducable," regardless of the nature or severity of their disability or whether they were living with their families or in residential institutions. The former Junior Training Centres were redesignated as special schools and were administered by the same Local Education Authorities who were responsible for all other publicly funded schools in the community. This paper highlights major developments in the education of children with intellectual disabilities in the light of an early review of progress and problems and subsequent reforms to the education system as a whole. Key issues include access to the National Curriculum, prospects for the education of children with intellectual disabilities in mainstream schools, and the implications of these developments for the professional development of all teachers.     

The deployment of the medico-psychological gaze and disability expertise in relation to children with intellectual disability

In this study, we adopt the concepts of Michel Foucault on the medical gaze and Nikolas Rose on psychological expertise to differentiate between two forms of expertise evident in the education of intellectually disabled children. We draw on a discourse analytic study carried out in South Africa on intellectual disability in relation to educational practice to examine the operation of a medico-psychological gaze that calls for disability expertise in the management of disability. We conclude our discussion by noting that the dichotomy between impairment and disability that is proposed in the social model of disability does little to destabilise the power of the medico-psychological gaze since impairment is conceded to biomedical knowledge as an object of positive knowledge. This tacit acceptance of the medical authority gives sanction to disability expertise that operates in diffuse ways to regulate the educational experience of learners with intellectual disability. The implications of this conception for inclusive education are briefly explored, and further areas for research are suggested.     

Parents and youth with learning disabilities: perceptions of relationships and communication

The study examined perceptions of family relationships and communication in 52 families who have an adolescent child diagnosed with learning disabilities (LD) with a matched group of 52 families who have a child without LD. Parents and youth completed a self-reported Family Relations and Communication Scales assessment. Findings revealed parents perceived their child as either overinvolved or underinvolved with their parents and not sharing the same values and norms as their parents. Findings indicated that parents of youth with and without LD share similar perceptions of both the openness and problematic aspects of family communication. Youth with and without LD reported higher levels of problematic maternal involvement than perceived by the mothers; youth without LD rated their mothers' affective expression higher than reported by their mothers; both groups of youth perceived their mothers' and their fathers' communication as less open and more problematic than reported by their parents.     

The Perceptions and Experiences of Taiwanese Parents who have Children with an Intellectual Disability

Most research into family care‐giving has been undertaken in western, English‐speaking societies with little cognisance taken of possible differences across cultures. Home‐based interviews were conducted with 117 mothers and fathers in Taipei City, Taiwan and five main themes were identified using content analysis. Three themes expressed the impact of the child on family functioning, parental health, and levels of stress and two themes described parents’ coping strategies and sources of support. Although these themes broadly replicate findings from other cultures, certain features of Taiwanese–Chinese society appear to accentuate the impact on mothers especially of having a child with an intellectual disability. The implications for the provision of family‐centred services are discussed, especially in helping parents to recognise their strengths and coping capabilities, and to promote their influence in changing cultural attitudes.     

Perceptions of school: parents of children enrolled and not enrolled in the Swedish special education programme—a longitudinal approach

The aim of this study was to explore perceptions of parents in Sweden of children with special education needs, including whether perceptions varied with regard to the child’s age, diagnosis or placement. The parents’ general perception of their degree of effort to influence their child’s education, as well as their perceived degree of influence, were analysed. The findings demonstrated relationships between child’s age and parental perceptions, suggesting that parents of older children with special education needs, regardless of diagnosis or placement, do not want to disengage themselves from their child’s education. The results also revealed that placement affected parental perceptions of their child’s school situation, with parents of children enrolled in the special education programme being more satisfied with their relationship to school and the teachers’ knowledge than parents whose children were not enrolled. Findings also revealed positive correlations between parents’ perceived degree of effort and their perception of having influenced their child’s school situation. The results are discussed in terms of improving family–school linkages within a systems framework.     

Inclusion: identifying potential stressors for regular class teachers

This research investigates the potential stressors for teachers during inclusion. The study reports findings from 571 Queensland primary school teachers who were involved with including a child with a moderate or severe intellectual disability in their regular classrooms. Teachers who responded to the Teacher Stress and Coping Questionnaire (TSC) did not appear to be overly stressed by inclusion. Issues that related to a teacher's professional competence and the behaviour of the child with the intellectual disability were the most stressful for teachers. Female teachers reported greater stress than their male counterparts when coping with classroom issues. An increase in number of years involved with inclusion and participation in formal training were associated with a reduction in stress. Discussion focuses on the need to identify potential stressors during inclusion to enable more appropriate preservice and inservice training and support to be provided.     

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.     

La Transición: parent perspectives on transition for Latino youth with intellectual and developmental disabilities

The transition to adulthood can be a challenging time for adolescents with intellectual and developmental disabilities. Its complexity, however, may be magnified for families who have immigrated to the United States. This study examined the transition expectations and experiences of six first-generation, Latino parents and their transition-aged (14–22) children with intellectual disability, autism, and/or multiple disabilities. Through individual interviews held in Spanish or English, parents offered insights into (1) their visions of success for their child, (2) the distinct barriers they face as immigrant families, and (3) their suggestions for schools and adult agencies related to supporting strong transitions. Their portraits of desired outcomes were quite individualized and reflected high expectations. Factors identified as inhibiting successful transitions included persistent language barriers, the views of certain professionals and community members, and exclusion from typical school experiences. Parents encouraged schools to support family advocacy, foster greater student independence, expand adult programming, and reduce segregated educational placements. We present implications for educators on working with Latino families, as well as offer recommendations for future research.     

Media portrayal of a hidden problem: An analysis of Hong Kong newspaper coverage of child maltreatment in 2016

The news media plays a vital role in providing child protection information and resources, shaping the public’s understanding and perceptions of child maltreatment, and exposing system failures and setting policy agendas. To date, little is known about how child maltreatment is portrayed in the media in societies where these issues remain largely hidden and under-recognized. The purpose of the present study was to systematically examine newspaper coverage on child abuse and neglect in Hong Kong in order to assess how child maltreatment is currently presented and framed within public discourse.A total of 579 newspaper reports relevant to child maltreatment from four local newspapers in 2016 were reviewed. Similar to prior findings, cases involving sexual abuse received disproportionately more attention compared with other maltreatment types. The vast majority of news reports focused on specific cases or events, and seldom discussed child maltreatment as a broader social issue. Differences in reporting style and media framing were also compared by newspaper credibility, and for free versus paid newspapers.As a mass communication tool, more guidelines are needed to formulate public messages about child maltreatment that can improve individual, community, and structural capacities to prevent, identify, and respond to children who are victimized by abuse and neglect. This is especially important in jurisdictions where no mandatory reporting framework exists to help identify vulnerable children, and where the majority of child maltreatment is brought to the attention of authorities by families and those living within the child’s community.     

Democracy or fellowship and participation with peers: what constitutes one’s choice to self-segregate?

Democracy in an inclusive discourse in education relates to all children’s rights to comment upon and influence matters concerning their interest in education. The article’s empirical data are based on a girl categorised with intellectual disability who through her surroundings is granted the right to influence her physical placement in school, which results in her often choosing to segregate herself from the fellowship with peers. This creates a dilemma for the school, which is faced with the question of overruling her decision in favour of other aspects of inclusion such as fellowship and participation or to continue supporting her decision to segregate. Based on theoretical contributions by Ian Hacking and Lev Vygotskij, this article discusses how schools and teachers approach children that are categorised as intellectually disabled and how the category influences the construction of their identity. Further, constructions of identity govern how the child views themselves and their surroundings. How they understand themselves in relation to the context and situations they are part of will ultimately affect what needs, wishes and compensation strategies the child develops. Studying the structures at play might contribute to further understanding about what causes a child to decide in a manner that conflicts with dimensions of inclusion.