Parent Perspectives to Inform Development of Measures of Children's Participation and Environment

Bedell, Gary; Khetani, Mary; Cousins, Martha; Coster, Wendy J.; Law, Mary

doi:10.1016/j.apmr.2010.12.029

Cited by 100 publications

(130 citation statements)

References 39 publications

Supporting

Mentioning

118

Contrasting

Unclassified

Order By: Relevance

“…Parents of children with and without disabilities have repeatedly identified factors beyond the child’s impairments that impact participation, including the physical, social, attitudinal, and institutional features of their home, school, and community environments. 42 Parents and teachers may be able to address these issues by regulating access to educational materials, tailoring activities according to the child’s abilities, and defining social networks that impact how children experience their everyday lives. To inform the design of this type of activity-based intervention, detailed information is needed about the range of home, school, and community activities that children and youth with HFM want or need to participate in, their experiences when participating in these activities (e.g., how often and how much they participate, and how satisfied they are with their participation), and their perceptions about how various features of their environments are set up to support or challenge their participation.…”

Section: Discussionmentioning

confidence: 99%

Health-Related Quality of Life in Children with Hemifacial Microsomia

Khetani

Collett

Speltz

et al. 2013

Journal of Developmental &Amp; Behavioral Pediatrics

Self Cite

View full text Add to dashboard Cite

Purpose To compare health-related quality of life (HRQOL) among children with and without hemifacial microsomia (HFM) as assessed by parents and the children themselves during the elementary school years. Methods One hundred thirty-six children with HFM (49 females, mean age = 6 years, 11.9 months, SD = 1.004) were compared with 568 matched controls (285 females, mean age = 6 years, 10.2 months, SD = 0.998) for parent and child responses on the PedsQL Version 4.0. Results After adjustment for sociodemographic factors, parent-reported summary scores were worse for affected children than control group children for physical (effect sizes [ES] = 0.26, p = .004), social (ES = 0.34, p = .001), and school (ES = 0.32, p = .001) functioning. There were no significant mean differences in summary scores based on children’s self-reported functioning. Conclusions Case-control mean differences in HRQOL were more apparent based on parent report, but not child self-report. Summary score findings suggest that case parents have concerns about their child’s HRQOL, particularly with respect to their child’s physical, social, and school functioning. Additionally, our findings highlight the potential differences between child and parent perspectives and the importance of collecting data from multiple reporters.

show abstract

Section: Discussionmentioning

confidence: 99%

Health-Related Quality of Life in Children with Hemifacial Microsomia

Khetani

Collett

Speltz

et al. 2013

Journal of Developmental &Amp; Behavioral Pediatrics

Self Cite

View full text Add to dashboard Cite

show abstract

“…There are no other comparable studies related to this informal activity. However, Bedell, Khetani, Cousins, Coster, and Law (2011) report that the parents of children with and without disabilities think that these informal activities are the most important ones to participate in because they are flexible regarding when and where they take place and they can be performed with peers.…”

Section: Diversity Frequency and Contextual Factors -Participation Pmentioning

confidence: 99%

Fitness, Fun and Friends through Participation in Preferred Physical Activities: Achievable for Children with Disabilities?

Nyquist¹,

Moser

Jahnsen

2016

International Journal of Disability, Development and Education

View full text Add to dashboard Cite

“…Our methods reflect current best practices in item bank development previously reported in the pediatric literature by Coster 28 and Haley 29 among others. More specifically, our final domain framework and definitions are based on existing literature, supported by the expert interviews, and are developmentally appropriate for children, both in terms of definition as well as a breadth of concepts to engage different aspects of possible child cognitive heuristics.…”

Section: Discussionmentioning

confidence: 94%

Self-reported Pediatric Measures of Physical Activity, Sedentary Behavior, and Strength Impact for PROMIS

Tucker

Bevans

Teneralli

et al. 2014

Pediatric Physical Therapy

View full text Add to dashboard Cite

Purpose Children's physical activity (PA) levels are commonly assessed in pediatric clinical research, but rigorous self-report assessment tools for children are scarce, and computer adaptive test implementations are rare. Our objective was to improve pediatric self-report measures of activity using semi-structured interviews with experts and children for conceptualization of a child-informed framework. Methods Semi-structured interviews were conducted to conceptualize physical activity, sedentary behaviors, and strengthening activities. We performed systematic literature reviews to identify item-level concepts used to assess these 3 domains. Results We developed conceptual frameworks for each domain using words and phrases identified by children as relevant. Conclusions Semi-structured interview methods provide valuable information of children's perspectives and the ways children recall previous activities. Conceptualized domains of physical activity are based on the literature and expert views that also reflect children's experiences and understanding providing a basis for pediatric self-report instruments.

show abstract

Parent Perspectives to Inform Development of Measures of Children's Participation and Environment

Cited by 100 publications

References 39 publications

Health-Related Quality of Life in Children with Hemifacial Microsomia

Health-Related Quality of Life in Children with Hemifacial Microsomia

Fitness, Fun and Friends through Participation in Preferred Physical Activities: Achievable for Children with Disabilities?

Self-reported Pediatric Measures of Physical Activity, Sedentary Behavior, and Strength Impact for PROMIS

Contact Info

Product

Resources

About