Parent Perspectives on Educational Needs of Students with Sex Chromosome Aneuploidies

Students with sex chromosome aneuploidies (SCAs) are at increased risk for learning disabilities and often require individualized supports in the school setting. This international survey study used qualitative methods and a bioecological systems framework to inductively capture parent perspectives on the challenges that occur in students with SCAs leading to the need for educational supports, how schools serve children with SCAs, and the types of educational supports that are most helpful. Analysis of parent responses emphasized that challenges with reading, executive function, reduced stamina, social skills deficits, and emotional dysregulation act as barriers to learning, and are frequently triggered by busy or noisy classroom environments led by educators unfamiliar with needs of students with SCAs. Further, skills hovering in the borderline range are common to the SCA phenotype, and are not often well served special education systems challenged by limited resources and strict cut-offs for qualification. Parents report the need to strongly advocate for their child to receive adequate school support services. We recommend developing robust family-school partnerships, increased collaboration between the school and the child’s medical team, and acknowledgement of the significant role the genetic condition plays in the educational experiences of students with SCAs. Specific suggestions for school support plans for students with SCAs are provided.

Youth and Parent Perspectives on the Acceptability of a Group Physical Activity and Coping Intervention for Adolescents With Type 1 Diabetes

Purpose To examine youth and parent perspectives on the acceptability of Bright 1 Bodies, a group physical activity and coping intervention for adolescents with type 1 diabetes mellitus (T1DM). Methods Adolescents participated in 12 weekly sessions of moderate to vigorous physical activity and discussion with peers with T1DM. Adolescents completed an exit survey measuring satisfaction with the intervention on a 5-point Likert scale. Semistructured interviews were conducted with adolescents and at least one parent. Qualitative description was used to develop themes that summarize the acceptability of the intervention. Results Mean scores for survey subscales were: 4.5 (SD = 0.39) for program components and strategies, 4.4 (SD = 0.44) for comfort with the intervention, and 4.3 (SD = 0.62) for instructors. Themes included: (1) adolescents and parents valued being around others with T1DM and their families, (2) the intervention helped adolescents gain knowledge and reinforce diabetes self-management behaviors, (3) challenges included convenience and sustaining participant engagement, and (4) adolescents intended to sustain physical activity and diabetes self-management behaviors after the intervention. Conclusions Adolescents and parents viewed the intervention as acceptable across multiple domains. Participants valued the group aspect of the intervention, and future interventions would benefit from integrating social interactions with others with T1DM.