Securing provision for children with autistic spectrum disorders: the views of parents

An original questionnaire was designed to seek the perspectives of parents about the process of securing appropriate educational provision for their child with autism spectrum disorder. In total, 738 responses were analysed using both quantative and qualitative data. Although a broad range of opinion was evidenced and a clear majority of families were happy with the end decision of placement, most families were significantly less happy with the process to determine that provision. Most families found this process difficult to navigate and frustrating. This caused a high level of stress for a significant proportion of families. Implications for practice are discussed.

Safeguarding inheritance and enhancing the resilience of orphaned young people living in child- and youth-headed households in Tanzania and Uganda

This paper explores the resilience of orphaned young people in safeguarding the physical assets (land and property) that they inherited from their parents and in sustaining their households without a co-resident adult relative. Drawing on the concept of resilience and the sustainable livelihoods framework, this paper analyses the findings of an exploratory study conducted with 15 orphaned young people heading households,18 of their siblings and 39 NGO workers and community members in Tanzania and Uganda. The research suggests that inherited land and property represent key determining factors in the formation and viability of child- and youth-headed households in both rural and urban areas. Despite experiences of stigma and marginalisation in the community, social networks were crucial in enabling young people to protect themselves and their property, in providing access to material and emotional resources and in enhancing their skills and capabilities to develop sustainable livelihoods. Support for child- and youth-headed households needs to recognise young people's agency and adopt a holistic approach to their lives that analyses the physical assets, material resources, human and social capital available to the household, as well as individual young people's wellbeing, outlook and aspirations. Alongside cash transfers and material support, youth-led collective mobilisation that is sustained over time may also help to build resilience and foster more supportive social environments that challenge property grabbing and the stigmatisation of child- and youth-headed households.

Observing interactions between children and adolescents and their parents: the effects of anxiety disorder and age

Parental behaviors, most notably overcontrol, lack of warmth and expressed anxiety, have been implicated in models of the development and maintenance of anxiety disorders in children and young people. Theories of normative development have proposed that different parental responses are required to support emotional development in childhood and adolescence, yet age has not typically been taken into account in studies of parenting and anxiety disorders. In order to identify whether associations between anxiety disorder status and parenting differ in children and adolescents, we compared observed behaviors of parents of children (7–10 years) and adolescents (13–16 years) with and without anxiety disorders (n=120), while they undertook a series of mildly anxiety-provoking tasks. Parents of adolescents showed significantly lower levels of expressed anxiety, intrusiveness and warm engagement than parents of children. Furthermore, offspring age moderated the association between anxiety disorder status and parenting behaviors. Specifically, parents of adolescents with anxiety disorders showed higher intrusiveness and lower warm engagement than parents of non-anxious adolescents. A similar relationship between these parenting behaviors and anxiety disorder status was not observed among parents of children. The findings suggest that theoretical accounts of the role of parental behaviors in anxiety disorders in children and adolescents should distinguish between these different developmental periods. Further experimental research to establish causality, however, would be required before committing additional resources to targeting parenting factors within treatment.

Shared cognition in childhood anxiety: interpretation bias in preschool children and their parents

Although interpretation bias has been associated with the development and/or maintenance of childhood anxiety, its origins remain unclear. The present study is the first to examine intergenerational transmission of this bias from parents to their preschool-aged children via the verbal information pathway. A community sample of fifty parent–child pairs was recruited. Parents completed measures of their own trait anxiety and interpretation bias, their child’s anxiety symptoms, and a written story-stem measure, to capture the way parents tell their children stories. Interpretation bias was assessed in preschool-aged children (aged between 2 years 7 months and 5 years 8 months) using an extended story-stem paradigm. Young children’s interpretation bias was not significantly associated with their own anxiety symptoms. Neither was there evidence for a significant association between parent and child interpretation bias. However, parents who reported they would tell their child one or more threatening story endings in the written story-stem task had significantly higher anxiety than those who did not include any threatening story endings. In turn, children whose parents did not include any threatening endings in their written stories had significantly lower threat interpretations on the child story-stem paradigm, compared to those with parents who included at least one threatening story ending. The results suggest that parental verbal information could play a role in the development of interpretation bias in young children.

Parents' experiences of their children's presence in discussions with physicians about leukemia

OBJECTIVE: We aimed to examine parents' views regarding their preadolescent child's presence during discussions about serious illnesses. METHODS: In-depth qualitative interviews with parents of children receiving treatment for acute lymphoblastic leukemia were conducted. Parents were sampled from 6 UK treatment centers. Analysis was informed by the constant comparative method and content analysis. RESULTS: We report on interviews with 53 parents (33 mothers, 20 fathers). Parents acknowledged the benefits of communicating openly with children, but few thought that their child's presence in discussions was straightforwardly desirable. They described how their child's presence restricted their own communication with physicians, made concentrating difficult, and interfered with their efforts to care for their child emotionally. Children's presence was particularly difficult when significant issues were being discussed, including prognoses, adverse results, and certain medical procedures. Parents felt that such discussions posed a potential threat to their child, particularly when they had not first had an opportunity to discuss information with the physician separately from the child. In contrast, separate meetings enabled parents to absorb information and to convey it to their child at an appropriate time and in a reassuring way. Some parents experienced difficulties in accessing separate meetings with physicians. CONCLUSIONS: The difficulties parents described could potentially be addressed by extending, beyond the diagnosis period, the practice of sequencing significant information so that it is communicated to parents in separate meetings before being communicated to the child and by periodically exploring with parents what information would be in each child's interests.

Faith and protection: the construction of hope by parents of children with leukemia and their oncologists

Background. Oncologists are criticized for fostering unrealistic hope in patients and families, but criticisms reflect a perspective that is oversimplified and “expert” guidance that is ambiguous or impractical. Our aim was to understand how pediatric oncologists manage parents' hope in practice and to evaluate how they address parents' needs. Methods. Participants were 53 parents and 12 oncologists whom they consulted across six U.K. centers. We audio recorded consultations approximately 1–2, 6, and 12 months after diagnosis. Parents were interviewed after each consultation to elicit their perspectives on the consultation and clinical relationship. Transcripts of consultations and interviews were analyzed qualitatively. Results. Parents needed hope in order to function effectively in the face of despair, and all wanted the oncologists to help them be hopeful. Most parents focused hope on the short term. They therefore needed oncologists to be authoritative in taking responsibility for the child's long-term survival while cushioning parents from information about longer-term uncertainties and being positive in providing information about short-term progress. A few parents who could not fully trust their oncologist were unable to hope. Conclusion. Oncologists' pivotal role in sustaining hope was one that parents gave them. Most parents' “faith” in the oncologist allowed them to set aside, rather than deny, their fears about survival while investing their hopes in short-term milestones. Oncologists' behavior generally matched parents' needs, contradicting common criticisms of oncologists. Nevertheless, oncologists need to identify and address the difficulty that some parents have in fully trusting the oncologist and, consequently, being hopeful.

Mental health, coping and family-functioning in parents of young people with obsessive-compulsive disorder and with anxiety disorders

Objective. To compare mental health, coping and family-functioning in parents of young people with obsessive-compulsive disorder (OCD), anxiety disorders, and no known mental health problems. Method. Parents of young people with OCD (N=28), other anxiety disorders (N=28), and no known mental health problems (N=62) completed the Brief Symptom Inventory (Derogatis, 1993), the Coping Responses Inventory (Moos, 1990), and the McMaster family assessment device (Epstein, Baldwin, & Bishop, 1983). Results. Parents of children with OCD and anxiety disorders had poorer mental health and used more avoidant coping than parents of non-clinical children. There were no group differences in family-functioning. Conclusion. The similarities across the parents of clinically referred children suggest that there is a case for encouraging active parental involvement in the treatment of OCD in young people.

Parents' verbal communication and childhood anxiety: a systematic review

Parents’ verbal communication to their child, particularly the expression of fear-relevant information (e.g., attributions of threat to the environment), is considered to play a key role in children’s fears and anxiety. This review considers the extent to which parental verbal communication is associated with child anxiety by examining research that has employed objective observational methods. Using a systematic search strategy, we identified 15 studies that addressed this question. These studies provided some evidence that particular fear-relevant features of parental verbal communication are associated with child anxiety under certain conditions. However, the scope for drawing reliable, general conclusions was limited by extensive methodological variation between studies, particularly in terms of the features of parental verbal communication examined and the context in which communication took place, how child anxiety was measured, and inconsistent consideration of factors that may moderate the verbal communication–child anxiety relationship. We discuss ways in which future research can contribute to this developing evidence base and reduce further methodological inconsistency so as to inform interventions for children with anxiety problems.

Reasonable adjustments for disabled pupils: what support do parents want for their child?

Schools in England (as elsewhere in Europe) have a duty to promote equality for disabled people and make reasonable adjustments for disabled children. There is, however, a degree of uncertainty about how well-placed parents are addressed to use the legislation to ensure their child’s needs. This paper presents data drawn from a national questionnaire designed for schools to use to identify their disabled pupils and examines, in detail, parental responses to a question on the kinds of support their child finds helpful in offsetting any difficulties they experience. It illustrates the complex and varied nature of the ‘reasonable adjustments’ that are required and an overriding sense that need to be underpinned by the values of a responsive child-centred approach, one that recognises that parents’ knowledge and understanding of their child are important. Schools need to have in place the two-way communication process that supports them in ‘knowing’ about the visible and invisible challenges that pupils with difficulties and disabilities face in participating in school life.

Collecting disability data from parents

This article describes the development and national trial of a methodology for collecting disability data directly from parents, enabling schools and local authorities to meet their obligations under the Disability Discrimination Act (DDA; 2005) to promote equality of opportunity for all children. It illustrates the complexities around collecting this information and also highlights the dangers of assuming that special educational needs (SENs) equate to disability. The parental survey revealed children with medical and mental health needs, but no SENs, who were unknown to schools. It also revealed children with a recorded SEN whose parents did not consider that they had a disability in line with the DDA definition. It identified a number of children whose disability leads to absences from school, making them vulnerable to underachievement. These findings highlight the importance of having appropriate tools with which to collect these data and developing procedures to support their effective use. We also draw attention to the contextual nature of children’s difficulties and the importance of retaining and respecting the place of subjective information. This is central to adopting a definition of disability that hinges on experience or impact.