Facets of Parenting a Child with Hypoplastic Left Heart Syndrome

The purpose of the study was to conceptualize the needs of parents of young children with hypoplastic left heart syndrome (HLHS) to provide a theoretical framework to inform the development of future parent interventions. Participants were parents and grandparents (n = 53) of 15 young children who had undergone the Sano surgical approach for HLHS. Analysis of recorded and transcribed single interviews with each participant was done as directed by interpretive description methodology. A model of five facets of parenting was conceptualized. These included survival parenting, “hands-off” parenting, expert parenting, uncertain parenting, and supported parenting. The facets of parenting delineated through this study provide a theoretical framework that can be used to guide the development and evaluation of interventions for parents of children with complex congenital heart disease and potentially other life-threatening conditions. Each facet constitutes a critical component for educational or psychosocial intervention for parents

A cluster randomized trial of a transition intervention for adolescents with congenital heart disease: rationale and design of the CHAPTER 2 study

BACKGROUND: The population of adolescents and young adults with congenital heart disease (CHD) is growing exponentially. These survivors are at risk of late cardiac complications and require lifelong cardiology care. However, there is a paucity of data on how to prepare adolescents to assume responsibility for their health and function within the adult health care system. Evidence-based transition strategies are required. METHODS: The Congenital Heart Adolescents Participating in Transition Evaluation Research (CHAPTER 2) Study is a two-site cluster randomized clinical trial designed to evaluate the efficacy of a nurse-led transition intervention for 16–17 year olds with moderate or complex CHD. The primary endpoint is excess time to adult CHD care, defined as the time interval between the final pediatric cardiology appointment and the first adult CHD appointment, minus the recommended time interval between these appointments. Secondary endpoints include the MyHeart score (CHD knowledge), Transition Readiness Assessment Questionnaire score, and need for catheter or surgical re-intervention. Participants are enrolled in clusters based on week of attendance in the pediatric cardiology clinic. The intervention consists of two one-hour individualized sessions between a cardiology nurse and study participant. Session One focuses on knowledge of the participant’s CHD, review of their cardiac anatomy and prior interventions, and potential late cardiac complications. Session Two focuses on self-management and communication skills through review and discussion of videos and role-play. The study will recruit 120 participants. DISCUSSION: Many adolescents and young adults experience a gap in care predisposing them to late cardiac complications. The CHAPTER 2 Study will investigate the impact of a nurse-led transition intervention among adolescents with CHD. Fidelity of the intervention is a major focus and priority. This study will build on our experience by (i) enrolling at two tertiary care programs, (ii) including a self-management intervention component, and (iii) evaluating the impact of the intervention on time to ACHD care, a clinically relevant outcome. The results of this study will inform pediatric cardiology programs, patients and policy makers in judging whether a structured intervention program provides clinically meaningful outcomes for adolescents and young adults living with CHD. TRIAL REGISTRATION: ClinicalTrials.gov ID NCT0172333

57-4-463-467 AJOT

OBJECTIVE. In early intervention programs, parents are often asked to teach their child new skills. As fathers are increasingly involved in intervention, clinicians need more information on fathers' unique interactive style. This pilot study compared mothers' and fathers' parent-child interactions during a teaching episode to identify similarities and differences in order to better understand parents' strengths. METHODS. The Nursing Child Assessment Teaching Scale was used to observe 10 mothers and 10 fathers interacting with their 10-to 28-month-old children in their homes. The children were receiving early intervention for a motor delay. The Caregiver Scores (parent' s contribution to the interaction) of mothers and others were compared using paired t tests. RESULTS. Mothers had more optimal interactions as indicated by significantly higher Caregiver scores than fathers, t (9) = 3.83, p = .004. The subscales with statistically significant differences were Caregiver Contingency and Cognitive Growth Fostering. Children's scores when they interacted with their mothers or fathers did not differ. CONCLUSION. When observing fathers teaching their child new skills, therapists should remember that fathers of children with motor delays (and typically developing children) may use a more task-oriented communication style with less consideration of the child's actions than do mothers. Ganadaki, E., & Magill-Evans, J. (2003). Brief report-Mothers' and fathers' interactions with children with motor delays

The quality of life of young men with Asperger syndrome : a brief report

Factors influencing quality of life for persons with Asperger syndrome are not yet understood. Men, ages 18 to 21, completed the World Health Organization Quality Of Life measure, the Perceived Support Network Inventory, and a semi-structured interview, Asperger syndrome affects quality of life beyond the obvious social impact. The 12 men with Asperger syndrome reported a significantly lower social and physical quality of life than did the 13 men in the control group. Education, living arrangements, and number of friends were remarkably similar between groups. Those with Asperger syndrome had less positive employment experiences and showed more preference for solitary activities. Interventions need to be based on a holistic model

Playfulness in Children with Limited Motor Abilities When Using a Robot

Aims: Children with limited gross motor and manual abilities have fewer opportunities to engage in free play. We investigated the effect of a robotic intervention on the playfulness of children with cerebral palsy (CP). Methods: We used a partially nonconcurrent multiple baseline design with four children and their mothers. Children were classified in level IV or V on the Gross Motor Function and Manual Ability Classification Systems. The intervention was the availability of an adapted Lego robot during a 15-min free play session between the child and mother. There were two sessions per week for about 14 weeks. Playfulness was measured using the Test of Playfulness. Results: Statistical comparisons using the 2 SD band and X-moving range chart methods revealed that all the children's levels of playfulness increased significantly while they played with the robot. Comparison of baseline and follow-up phase indicated that three children had retention of improved level of playfulness. Conclusion: Play with adapted Lego robots increased the level of playfulness in all four children during free play with their mothers. The findings have implications for providing children with limitations in motor abilities opportunities for free play with family and friends. © 2016, © Taylor and Francis Group, LLC

Playfulness in Children with Limited Motor Abilities When Using a Robot

Aims: Children with limited gross motor and manual abilities have fewer opportunities to engage in free play. We investigated the effect of a robotic intervention on the playfulness of children with cerebral palsy (CP). Methods: We used a partially nonconcurrent multiple baseline design with four children and their mothers. Children were classified in level IV or V on the Gross Motor Function and Manual Ability Classification Systems. The intervention was the availability of an adapted Lego robot during a 15-min free play session between the child and mother. There were two sessions per week for about 14 weeks. Playfulness was measured using the Test of Playfulness. Results: Statistical comparisons using the 2 SD band and X-moving range chart methods revealed that all the children's levels of playfulness increased significantly while they played with the robot. Comparison of baseline and follow-up phase indicated that three children had retention of improved level of playfulness. Conclusion: Play with adapted Lego robots increased the level of playfulness in all four children during free play with their mothers. The findings have implications for providing children with limitations in motor abilities opportunities for free play with family and friends. © 2016, © Taylor and Francis Group, LLC

Advancing Rehabilitation Research: An Interactionist Perspective to Guide Question and Design

The purpose of this position statement is to propose an interactionist framework to bring together the existing literature and provide a unifying direction for rehabilitation research. The framework comprises three components: the conceptual model, the research question, and the research design. The interactionist conceptual model has been adapted from the World Health Organization International Classification of Functioning, Disability, and Health. The model forms the starting point that guides the specification of the research question, which, in turn, guides the selection of research design. This approach demands that the question takes precedence and that there be an extensive repertoire of research designs, each of which is valued for its \u27goodness-of-fit\u27 with the question, rather than an a priori, single hierarchical ordering of designs. Research designs must be appropriate for questions that examine the disability experience, development over the lifespan, multifaceted interventions, low incidence conditions, and development of new interventions. Analytical challenges include dealing with confounding, mediating, and moderating variables. Rehabilitation researchers--and those who fund their work--should consider and value the use of diverse research methods to best answer the questions posed from the interactionist perspective

A cluster randomized trial of a transition intervention for adolescents with congenital heart disease: rationale and design of the CHAPTER 2 study

The population of adolescents and young adults with congenital heart disease (CHD) is growing exponentially. These survivors are at risk of late cardiac complications and require lifelong cardiology care. However, there is a paucity of data on how to prepare adolescents to assume responsibility for their health and function within the adult health care system. Evidence-based transition strategies are required.This study was funded by a Heart and Stroke Foundation of Canada Grant-in- Aid