Beyond the Motor Domain: Exploring the Secondary Effects of a Fundamental Motor Skill Intervention for Children With Autism Spectrum Disorder.

Early motor skill interventions have been shown to improve the motor skill proficiency of children with autism spectrum disorder; however, little is known about the secondary effects associated with these types of interventions (e.g., influence on behavior, social skills, family dynamics). The purpose of this qualitative study was to (a) investigate parents' perceptions of the child-level benefits associated with a fundamental motor skill intervention for their 4-year-olds with autism spectrum disorder and (b) explore how child-level benefits influenced the family unit. Eight parents (N = 8) were interviewed (semistructured) about their experiences with the intervention for their child(ren); the study was grounded in phenomenology. Five main child-level benefits emerged, including improvements with (a) motor skills, (b) social skills, (c) listening skills, (d) turn-taking skills, and (e) transition skills. The child-level benefits then extended to family members in a number of ways (e.g., more positive sibling interactions). These findings highlight several important secondary effects that should be investigated in future research.

Patient and caregiver engagement in research: factors that influence co-enrollment in research.

BACKGROUND: Recruitment of pediatric participants in studies is difficult due to the vulnerability of this population and the scarcity of certain conditions. Co-enrolling in multiple studies is a strategy that may help overcome this problem. Although anecdotal evidence suggests that co-enrollment may increase patient and caregiver burden, few studies have been conducted from the patient perspective. The objective of this quality improvement project was to elicit patient and caregiver opinions on co-enrolling in multiple research studies. METHODS: Patients and caregivers attending the rheumatology clinic at The Hospital for Sick Children were invited to participate in a semi-structured interview or focus group session. Participants were asked to respond to ten prompts, organized into five categories: experience in clinical research, multiple studies, study selection, study timing and other comments. Sessions were recorded, transcribed and analyzed using NVivo 10 to identify common themes. RESULTS: Overall, eighteen caregivers and two patients were included in the study. Participants felt that the level of study involvement, rather than the number of studies, was the biggest factor affecting their decision to participate. Another factor commonly identified was the competing demands of participants' work and family life. Participants indicated that they generally preferred to be informed about all study opportunities and liked to receive this information prior to their appointments. Once informed, they preferred to be approached by the research team while they were waiting for their appointment. CONCLUSION: Patients and caregivers are open to the concept of co-enrolling in multiple research studies. There are multiple factors which influence decisions to co-enroll in studies including the demands of the study and personal limitations. These findings will help guide the design and practices of future research.