Bryony Beresford

Identification and description of environmental factors that influence participation of children with cerebral palsy

Physical, social, and attitudinal environment may restrict participation in children with cerebral palsy (CP). Here we discuss existing/possible approaches in order to identify and describe this environment. We used a critical review of evidence from the World Health Organization Literature Review on Environmental Factors; a search of electronic databases; and talked to specialists in order to find unpublished papers and‘grey’literature. Both children with disabilities and their parents identified a range of barrier and facilitator factors. These included psychosocial pressures (family, school), financial difficulties, and inadequate public services. Observational studies suggest that building structure, loss of income, and provision of specific equipment have a direct impact on levels of child participation. Some available instruments attempt to capture environmental factors by client survey or objective measurement; most relate to adult contexts, but there are a few child‐specific instruments for surveying attitudes of children to peers with disabilities and for observation of the school environment. Defining and measuring potential environmental determinants of participation for children with CP needs further development; and here we propose how this might be done.

Burnout, psychiatric morbidity, and work-related sources of stress in paediatric oncology staff: a review of the literature

Objective: A growing body of research suggests that staff working in adult oncology services are at risk of burnout and psychiatric morbidity, but whether or not these findings can be generalised to staff working in paediatric oncology is questionable. This paper reports the findings of a comprehensive review of the literature on burnout, psychiatric morbidity, and sources of work‐related stress in paediatric oncology staff.

Families with disabled children

Social and economic needs are high but remain largely unmet

Home, Sick Home: Using the Housing Experiences of Disabled Children to Suggest a New Theoretical Framework

Using the example of a study of the housing needs of disabled children, the paper suggests a new framework for exploring the links between health, disability and housing. It examines the literature of housing and disability and of health and housing and finds that the former omits health issues and the latter neglects disability. The paper suggests that a key reason why housing, disability and health have not been linked in the past is an unwillingness on the part of the independent living movement to medicalise disability. In the study, however, the adverse effects on physical and mental health of unsuitable housing emerged, quite unprompted, as a central theme. The studys findings can be generalised and go beyond the prevailing account of housing and disability in a number of ways. A new way of thinking about domestic environments and disability may mean that the definition of housing need goes beyond stair lifts and ramps to issues of poverty and health, conflict between families, neighbourhoods, and, most centrally of all, the constraints of physical and social space. The paper concludes that far from challenging the social model of disability the proposed framework supports it.

Key health outcomes for children and young people with neurodisability: qualitative research with young people and parents

Objectives To identify key health outcomes, beyond morbidity and mortality, regarded as important in children and young people with neurodisability, and their parents. Design Qualitative research incorporating a thematic analysis of the data supported by the Framework Approach; the International Classification of Functioning, Disability and Health (ICF) provided a theoretical foundation. Setting The study was conducted in community settings. Participants Participants were 54 children and young people with neurodisability: 50 participated in focus groups, and 4 in interviews; 53 parents participated: 47 in focus groups and 6 in interviews. Children/young people and parents were recruited through different networks, and were not related. Results Children/young people and parents viewed health outcomes as inter-related. Achievement in some outcomes appeared valued to the extent that it enabled or supported more valued domains of health. Health outcomes prioritised by both young people and parents were: communication, mobility, pain, self-care, temperament, interpersonal relationships and interactions, community and social life, emotional well-being and gaining independence/future aspirations. Parents also highlighted their childs sleep, behaviour and/or safety. Conclusions Those responsible for health services for children/young people with neurodisability should take account of the aspects of health identified by families. The aspects of health identified in this study provide a basis for selecting appropriate health indicators and outcome measures.

Meaningful health outcomes for paediatric neurodisability: Stakeholder prioritisation and appropriateness of patient reported outcome measures

BackgroundHealth services are increasingly focused on measuring and monitoring outcomes, particularly those that reflect patients’ priorities. To be meaningful, outcomes measured should be valued by patients and carers, be consistent with what health professionals seek to achieve, and be robust in terms of measurement properties.The aim of this study was (i) to seek a shared vision between families and clinicians regarding key aspects of health as outcomes, beyond mortality and morbidity, for children with neurodisability, and (ii) to appraise which multidimensional patient reported outcome measures (PROMs) could be used to assess salient health domains.MethodsRelevant outcomes were identified from (i) qualitative research with children and young people with neurodisability and parent carers, (ii) Delphi survey with health professionals, and (iii) systematic review of PROMs. The International Classification of Functioning Disability and Health provided a common language to code aspects of health. A subset of stakeholders participated in a prioritisation meeting incorporating a Q-sorting task to discuss and rank aspects of health.ResultsA total of 33 pertinent aspects of health were identified. Fifteen stakeholders from the qualitative and Delphi studies participated in the prioritisation meeting: 3 young people, 5 parent carers, and 7 health professionals. Aspects of health that emerged as more important for families and targets for health professionals were: communication, emotional wellbeing, pain, sleep, mobility, self-care, independence, mental health, community and social life, behaviour, toileting and safety. Whilst available PROMs measure many aspects of health in the ICF, no single PROM captures all the key domains prioritised as for children and young people with neurodisability. The paucity of scales for assessing communication was notable.ConclusionsWe propose a core suite of key outcome domains for children with neurodisability that could be used in evaluative research, audit and as health service performance indicators. Future work could appraise domain-specific PROMs for these aspects of health; a single measure assessing the key aspects of health that could be applied across paediatric neurodisability remains to be developed.

Young People with High-Functioning Autism and Asperger's Syndrome Planning for and Anticipating the Move to College: What Supports a Positive Transition?.

For many young people in England, the move into continuing education involves a transfer from the school where they were educated to a further education college. For those with high-functioning autism or Aspergers syndrome, this can be a challenging process. Past research has demonstrated some of the problems that these young people can encounter. This article by Wendy Mitchell and Bryony Beresford, both based in the Social Policy Research Unit at the University of York, adds to the evidence base by describing how best to support these young people, focusing specifically on ‘young person endorsed’ practice. Data are gleaned from qualitative interviews with 18 young people with high-functioning autism/Aspergers syndrome. Findings reveal that young people welcomed the involvement of practitioners; however, specific forms of help and knowledge were particularly valued. In addition, it was parents, as opposed to professionals, who typically emerged as the most significant and valued source of support. Implications for practice are discussed, including the support needs of parents.

A preliminary investigation into the effectiveness of a group-delivered sleep management intervention for parents of children with intellectual disabilities

Sleep problems are more prevalent and severe among children with intellectual disabilities and autism compared to typically developing children. Training parents in behavioural approaches to manage sleep problems is advocated. However, delivering such interventions via groups is novel. This article reports the findings from a preliminary evaluation of a group-delivered intervention routinely delivered by a Child and Adolescent Mental Health Service Learning Disability team in England. For this purpose, parents (n = 23) of children with intellectual disabilities were recruited. The Children’s Sleep Habits Questionnaire, Parents’ Sense of Competence Scale and parent-set goals captured outcomes at pre-intervention, post-intervention and 3- and 6-month follow-up. Intervention delivery costs were collected. Take-up was high (86%), and no parent dropped out. Statistically significant improvements in night wakings, parent-set goals and parents’ sense of efficacy were observed. The estimated mean cost of delivering each intervention was British (GBP) £1570. Findings suggest the intervention is a low-cost, acceptable service warranting further evaluation.

Riding the rapids: living with autism or disability--an evaluation of a parenting support intervention for parents of disabled children.

Evidence on the effectiveness of interventions to support parents of disabled children to manage their childs behaviour problems is limited. The aim of this study was to evaluate a group-delivered intervention (Riding the Rapids) which was specifically developed for parents of a child with a disability or autistic spectrum condition. This programme has been routinely delivered by a community-based mental health team across an urban, multi-ethnic locality for a number of years. A non-randomised controlled study design comprising an intervention group (n=48) and comparator (no intervention) group (n=28) was used to evaluate the effects of the intervention on child behaviour (Eyberg Child Behaviour Inventory; parent-set goals) and parenting efficacy and satisfaction (Parents Sense of Competence Scale) at post-intervention and six-month follow-up. Data on costs to the service provider of delivering the intervention were also collected. Receipt of the intervention was associated with significant reductions in parent-reported behaviour problems and significant improvements in parenting efficacy and satisfaction. At six-month follow-up, progress towards achieving parent-set child behaviour goals and parenting satisfaction had been maintained. Post hoc analysis suggests parents who do not have English as a first language may not benefit as much as other parents from this intervention. Findings suggest this is a promising intervention for parents of a child with a disability that is likely to be less resource intensive to service providers than individually delivered interventions. Limitations and implications for future research are discussed.

How many children and young people with life-limiting conditions are clinically unstable? A national data linkage study

Objective To determine the clinical stage (stable, unstable, deteriorating or dying) for children and young people (CYP) aged 0–25 years in Scotland with life-limiting conditions (LLCs). Design National cohort of CYP with LLCs using linked routinely collected healthcare data. Setting Scotland. Patients 20 436 CYP identified as having LLCs and resident in Scotland between 1 April 2009 and 31 March 2014. Main outcome Clinical stage based on emergency inpatient and intensive care unit admissions and date of death. Results Over 2200 CYP with LLCs in Scotland were unstable, deteriorating or dying in each year. Compared with 1-year-olds to 5-year-olds, children under 1 year of age had the highest risk of instability (OR 6.4, 95% CI 5.7 to 7.1); all older age groups had lower risk. Girls were more likely to be unstable than boys (OR 1.15, 95% CI 1.06 to 1.24). CYP of South Asian (OR 1.61, 95% CI 1.28 to 2.01), Black (OR 1.58, 95% CI 1.04 to 2.41) and Other (OR 1.33, 95% CI 1.02 to 1.74) ethnicity were more likely to experience instability than White CYP. Deprivation was not a significant predictor of instability. Compared with congenital abnormalities, CYP with most other primary diagnoses had a higher risk of instability; only CYP with a primary perinatal diagnosis had significantly lower risk (OR 0.23, 95% CI 0.19 to 0.29). Conclusions The large number of CYP with LLCs who are unstable, deteriorating or dying may benefit from input from specialist paediatric palliative care. The age group under 1 and CYP of South Asian, Black and Other ethnicities should be priority groups.