Efficacy and Acceptability of Reduced Intensity Constraint-Induced Movement Therapy for Children Aged 9–11 years with Hemiplegic Cerebral Palsy: A Pilot Study

OBJECTIVE: Assess efficacy and acceptability of reduced intensity constraint-induced movement therapy (CIMT) in children with cerebral palsy (CP).

METHODS: Single-subject research design and semi-structured interviews. Children (9-11y) with hemiplegia underwent five baseline assessments followed by two weeks CIMT. Six further assessments were performed during treatment and follow-up phases. The primary outcome was the Melbourne Assessment of Unilateral Upper Limb Function (MUUL). Quantitative data were analysed using standard single-subject methods and qualitative data by thematic analysis.

RESULTS: Four of the seven participants demonstrated statistically significant improvements in MUUL (3-11%, p < .05). Two participants achieved significant improvements in active range of motion but strength and tone remained largely unchanged. Qualitative interviews highlighted limitations of the restraint, importance of family involvement, and coordination of treatment with education.

CONCLUSIONS: Reduced intensity CIMT may be effective for some children in this population; however it is not suitable for all children with hemiplegia.

Stress and coping in parents of newly born twins

Objective: Research indicates that parents of twins have poorer psychosocial outcomes than parents of singletons. Parents who have conceived using assisted reproductive technology (ART) have been found to be at higher risk of negative psychosocial outcomes compared to parents who have conceived spontaneously. The current study aimed to model the factors associated with parenting stress of newly-born twins, using the Transactional Model of Stress.

Methods: Data were collected using a cross-sectional survey design with participants identified from delivery records across Northern Ireland. Mothers and fathers (n = 104) of twins aged between 1 and 12 months old returned a questionnaire pack containing the Parenting Stress Index, Impact on the Family Scale-Financial Burden, Coping Orientation to Problems Experienced – Brief Version, Multidimensional Scale of Perceived Social Support, General Health Questionnaire and a demographic questionnaire.

Results: There were no differences on psychological outcomes between parents who had conceived via ART and those who conceived spontaneously. Regression analyses found that social interaction and support is an important variable in terms of the psychological outcomes experienced by parents of twins.

Conclusion: Parents of newly-born twins regardless of the mode of conception should be considered an at risk group for parental distress. Support groups such as the Twins and Multiple Births Association could be important in providing that crucial social interaction and support that seems to be important in the emotional well-being of parents of twins.

Imagined and occasional co-presence in open adoption: how adoptive parents mediate birth connections.

This chapter explores the ways that adopted children and their birth parents can remain co-present following adoption. It focuses specifically on public adoption of children who have been in the care of child welfare services, and draws on adoptive parents’ accounts of their experiences of adoption openness. The distinctive features of co-presence between children and their birth parents after adoption are: that it is mediated by negotiated contact agreements and through on-going adoptive family practices; and that it is occasional, with its infrequency displaying the status and significance of birth relationships. Physical co-presence can in some cases be achieved through face-to-face contact meetings, however, even when this not possible, birth parents can be present in the hearts and minds of the adoptive family, constituting a form of imagined co-presence. The chapter explores how adopters achieve, delimit and mediate imagined and physical co-presence between their child and birth parent and concludes by considering the emergence of virtual co-presence via online social media.

Systematic review of tools to measure outcomes for young children with autism spectrum disorder

BACKGROUND: The needs of children with autism spectrum disorder (ASD) are complex and this is reflected in the number and diversity of outcomes assessed and measurement tools used to collect evidence about children's progress. Relevant outcomes include improvement in core ASD impairments, such as communication, social awareness, sensory sensitivities and repetitiveness; skills such as social functioning and play; participation outcomes such as social inclusion; and parent and family impact.

OBJECTIVES: To examine the measurement properties of tools used to measure progress and outcomes in children with ASD up to the age of 6 years. To identify outcome areas regarded as important by people with ASD and parents.

METHODS: The MeASURe (Measurement in Autism Spectrum disorder Under Review) research collaboration included ASD experts and review methodologists. We undertook systematic review of tools used in ASD early intervention and observational studies from 1992 to 2013; systematic review, using the COSMIN checklist (Consensus-based Standards for the selection of health Measurement Instruments) of papers addressing the measurement properties of identified tools in children with ASD; and synthesis of evidence and gaps. The review design and process was informed throughout by consultation with stakeholders including parents, young people with ASD, clinicians and researchers.

RESULTS: The conceptual framework developed for the review was drawn from the International Classification of Functioning, Disability and Health, including the domains 'Impairments', 'Activity Level Indicators', 'Participation', and 'Family Measures'. In review 1, 10,154 papers were sifted - 3091 by full text - and data extracted from 184; in total, 131 tools were identified, excluding observational coding, study-specific measures and those not in English. In review 2, 2665 papers were sifted and data concerning measurement properties of 57 (43%) tools were extracted from 128 papers. Evidence for the measurement properties of the reviewed tools was combined with information about their accessibility and presentation. Twelve tools were identified as having the strongest supporting evidence, the majority measuring autism characteristics and problem behaviour. The patchy evidence and limited scope of outcomes measured mean these tools do not constitute a 'recommended battery' for use. In particular, there is little evidence that the identified tools would be good at detecting change in intervention studies. The obvious gaps in available outcome measurement include well-being and participation outcomes for children, and family quality-of-life outcomes, domains particularly valued by our informants (young people with ASD and parents).

CONCLUSIONS: This is the first systematic review of the quality and appropriateness of tools designed to monitor progress and outcomes of young children with ASD. Although it was not possible to recommend fully robust tools at this stage, the review consolidates what is known about the field and will act as a benchmark for future developments. With input from parents and other stakeholders, recommendations are made about priority targets for research.

FUTURE WORK: Priorities include development of a tool to measure child quality of life in ASD, and validation of a potential primary outcome tool for trials of early social communication intervention.

STUDY REGISTRATION: This study is registered as PROSPERO CRD42012002223.

FUNDING: The National Institute for Health Research Health Technology Assessment programme.