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1) To explore how children with spina bifida (SB) and their parents understand bodyweight, health and weight management; and 2) To identify what services and supports children with SB and their families feel are most appropriate to help them manage their health and weight. The study used interpretive description within a qualitative design. Participants were children with SB (aged 10-18) attending two Canadian SB clinics and their parents. Data were collected through individual interviews and analyzed using inductive thematic analysis. Five children and five parents participated in the study. Children and parents had a weight-centric approach to health, which was related to the child's mobility. Weight was considered to be under individual control and mostly through diet. Trusting relationships between healthcare providers, children and families were important to discuss weight in a non-judgemental manner. Children should be involved in setting meaningful and achievable weight management goals. Greater knowledge of how children with SB and their families understand weight and health offers opportunities for non-judgemental discussions about their needs and wishes. Helping families to place more value on health over weight may reduce feelings of stigma, while allowing children to develop some autonomy over health-related decisions. Children with spina bifida and their parents do not recognise the complexity of factors contributing to weight regulation. Weight regulation was often seen as the child's responsibility, which could lead to feelings of guilt and shame through internalised weight stigma Healthcare professionals working with children with spina bifida should explore their perceptions, beliefs, and behaviours related to weight, health and mobility to ensure they are not causing themselves physical and/or psychological harm [ABSTRACT FROM AUTHOR]

This study investigated the psychometric properties of the 12-item proxy-administered World Health Organization Disability Assessment Schedule (WHODAS) 2.0 in young children with chronic physical illness in Canada. Data come from the Multimorbidity in Youth across the Life-course, a longitudinal study of Canadian youth with physical illnesses (n = 263). Baseline parent-reported data from children (2–9 years, n = 143) and adolescents (10–16 years, n = 117) were analyzed. Wilcoxon's tests examined differences in WHODAS 2.0 scores between subgroups. Internal consistency was estimated, and confirmatory factor analysis modeled the WHODAS 2.0 factor structure. Regression modeling examined if the WHODAS 2.0 could discriminate between children with vs. without mental comorbidity. Differences were found between children and adolescents regarding self-care and getting along, and for the item on emotional affect. Inter-item correlations were similar between subgroups and internal consistency was strong for children (α = 0.90) and adolescents (α = 0.93). The factor structure of the WHODAS 2.0 was confirmed; parameter estimates were similar between subgroups. The association between mental comorbidity and disability did not differ by age – comorbidity was associated with greater disability (β = 5.87, p < 0.01). The 12-item proxy-administered WHODAS 2.0 appears valid and reliable in young children with physical illness and can be used in this population. The 12-item proxy-administered WHODAS 2.0 has acceptable inter-item correlations and internal consistency in young Canadian children with chronic physical illness, and its factor structure is consistent with previous reports Expansion of its use in measuring disability in young children provides the opportunity to use the WHODAS 2.0 across the life-course, facilitating the interpretation of changes in disability over time or in response to treatment Additional research is needed to determine responsiveness to change and the minimal clinically important difference of the WHODAS 2.0 in this population [ABSTRACT FROM AUTHOR]

To examine household income trajectories of children with and without neurodisability over a period of 6 years. We used four cycles of the Canadian National Longitudinal Survey of Children and Youth, a longitudinal study of the development and well-being of Canadian children from birth into adulthood. While household income increased over time for both groups, families of children with neurodisability had consistently lower household income compared to families of children without neurodisability even after controlling for child and family socio-demographic characteristics. The presence of an interaction effect between parent work status and child with neurodisability at baseline indicated that among children whose parent(s) were not working at baseline, household incomes did not differ between children with and without neurodisability. The association between child with neurodisability and lower household income may not hold for all types of parents', working status is an important consideration. Findings support the health selection hypothesis that health status shapes diverging economic conditions over time: children with a ND have lower household incomes than children without a ND child across all waves of the Canadian National Longitudinal Survey of Youth. Income gaps did not increase or decrease over time; rehabilitation services and policies must consider the lower average incomes associated with raising a child with a ND. Social assistance support likely plays a key role in closing the gap, especially for non-working families. [ABSTRACT FROM AUTHOR]

To identify current practices related to the assessment, monitoring and discussion of bodyweight, growth and obesity in neuromuscular clinics for children with Duchenne muscular dystrophy (DMD). A cross-sectional, online survey was distributed using snowball sampling to healthcare providers working with children with DMD across Canadian neuromuscular clinics. Summary and descriptive statistics were calculated. Content analysis was performed on open text responses. Thirty-seven responses were received, representing a range of healthcare disciplines. Height and weight were routinely assessed by 32/37 (87%) respondents, although only 21/37 (57%) responses reported having a clinic standard for measuring height and 23/37 (62%) for weight. While 32/36 (89%) reported discussing weight during consultations, only 13/37 (35%) felt confident doing so. Dietitians were considered the most appropriate person to discuss and manage weight with children and families, although only 17/37 (46%) reported having a dietitian involved in their clinic. Neuromuscular clinics could benefit from implementing consistent and recommended growth assessment practices. The development of evidence-based tools, training and protocols tailored to Duchenne muscular dystrophy should be a priority. Growth and weight monitoring approaches vary within and between neuromuscular clinics. Additional training on discussing and managing weight are warranted across disciplines. Advocacy is required to ensure access to dietetic expertise within neuromuscular clinics. [ABSTRACT FROM AUTHOR]

Purpose:To test a model of child, family and service determinants of participation in family and recreational activities for young children with cerebral palsy (CP). Methods:Participants were a convenience sample of 429 children (242 males) with CP, aged 18 to 60 months, representing all levels of the Gross Motor Function Classification System (GMFCS). Children were divided into two groups by GMFCS levels, levels I to II and levels III to V. Data on impairments and gross motor function were collected by therapists; parents provided information about children’s health conditions and adaptive behaviour. Seven months later, parents reported on family life and services received. One year after the beginning of the study, parents reported their children’s participation. Data from the two groups of children were analysed separately using structural equation modelling. Results:The model explained 35% and 40% of the variance of frequency of participation in family and recreation and 28% and 38% of enjoyment in participation, for the two groups of children, respectively. Children’s adaptive behaviour, family ecology, and number of community recreational programs were associated with the frequency of participation for both groups. Gross motor function was only associated with the frequency of participation for children in levels III–V. Adaptive behaviour was associated with enjoyment for both groups. The extent services met children’s needs was associated with enjoyment for children in levels I to II and family ecology was a determinant of enjoyment for children in levels III to V. Conclusion:Supporting children’s adaptive behaviour, family ecology, and access to community recreational programmes may foster participation in family and recreational activities for young children with CP.Implications for RehabilitationParticipation in family and recreational activities for young children with CP is complex and influenced by child, family and environmental factors.Practitioners are encouraged to support children’s adaptive behaviour and access to community programs and family relationships, involvement in community activities and expectations of their children.Optimizing gross motor function for children who have limitations in self-mobility may enhance their participation in family and recreational activities.For children with a good prognosis for walking, providing services perceived by parents to meet their children’s needs may enhance children’s enjoyment of participation. [ABSTRACT FROM PUBLISHER]