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

Expanding Qualitative Research Interviewing Strategies: Zoom Video Communications

The proliferation of new video conferencing tools offers unique data generation opportunities for qualitative researchers. While in-person interviews were the mainstay of data generation in qualitative studies, video conferencing programs, such as Zoom Video Communications Inc. (Zoom), provide researchers with a cost-effective and convenient alternative to in-person interviews. The uses and advantages of face-to-face interviewing are well documented; however, utilizing video conferencing as a method of data generation has not been well examined. The purpose of this paper is to examine the specific attributes of Zoom that contribute to high quality and in-depth qualitative interviews when in person interviewing is not feasible. While video conferencing was developed to facilitate long-distance or international communication, enhance collaborations and reduce travel costs for business these same features can be extended to qualitative research interviews. Overall, participants reported that Zoom video conferencing was a positive experience. They identified strengths of this approach such as: (1) convenience and ease of use, (2) enhanced personal interface to discuss personal topics (e.g., parenting), (3) accessibility (i.e., phone, tablet, and computer), (4) time-saving with no travel requirements to participate in the research and therefore more time available for their family. Video conferencing software economically supports research aimed at large numbers of participants and diverse and geographically dispersed populations

A Canadian Study toward Changing Local Practice in the Diagnosis of Pediatric Celiac Disease

Background. The European Society for Pediatric Gastroenterology, Hepatology and Nutrition endorses serological diagnosis (SD) for pediatric celiac disease (CD). The objective of this study was to pilot SD and to prospectively evaluate gastrointestinal permeability and mucosal inflammation at diagnosis and after one year on the gluten-free diet (GFD). We hypothesized that SD would be associated with similar short term outcomes as ED. Method. Children, 3-17 years of age, referred for possible CD were eligible for SD given aTTG level ≥200 U/mL, confirmed by repeat aTTG and HLA haplotypes. Gastrointestinal permeability, assessed using sugar probes, and inflammation, assessed using fecal calprotectin (FC), at baseline and after one year on a GFD were compared to patients who had ED. Results. Enrolled SD ( = 40) and ED ( = 48) patients had similar demographics. ED and SD groups were not different in baseline lactulose: mannitol ratio (L : M) (0.049 versus 0.034; = 0.07), fractional excretion of sucrose (%FES; 0.086 versus 0.092; = 0.44), or fecal calprotectin (FC; 89.6 versus 51.4; = 0.05). At follow-up, urine permeability improved and was similar between groups, L : M (0.022 versus 0.025; = 0.55) and %FES (0.040 versus 0.047; = 0.87) ( > 0.05). FC improved but remained higher in the SD group (37.1 versus 15.9; = 0.04). Conclusion. Patients on the GFD showed improved intestinal permeability and mucosal inflammation regardless of diagnostic strategy. This prospective study supports that children diagnosed by SD have resolving mucosal disease early after commencing a GFD

“Realizing the problem wasn’t necessarily me”: the meaning of childhood adversity and resilience in the lives of autistic adults

Purpose There is evidence that childhood adversity is correlated with poor health outcomes across the lifespan. Resilience results when internal and external protective factors in childhood mitigate this relationship. However, among children on the autism spectrum, these relationships are understudied, and little is known about the characteristics and role of adversity and resilience in their in their lives. This study interprets these phenomena as experienced by autistic young adults. Methods Initially, we conducted community engagement with five members of the autism community who advised on the research question, research design, and analysis. Subsequently, four autistic young adults, three women and one non-binary, aged 19–27, were recruited to participate in semi-structured interviews via phone, video conference, and online chat. Credibility checking interviews followed data analysis. Results Through interpretative phenomenological analysis we identified themes related to the negative effects of adversity, including social disconnection, mental and emotional well-being, sense of self, and development into young adulthood. Resilience developed in places of refuge and identity and was evident in their transitions into young adulthood. Conclusion These findings provide direction for decreasing adversity and fostering resilience in children and adolescents on the autism spectrum

A Canadian Study toward Changing Local Practice in the Diagnosis of Pediatric Celiac Disease

Background. The European Society for Pediatric Gastroenterology, Hepatology and Nutrition endorses serological diagnosis (SD) for pediatric celiac disease (CD). The objective of this study was to pilot SD and to prospectively evaluate gastrointestinal permeability and mucosal inflammation at diagnosis and after one year on the gluten-free diet (GFD). We hypothesized that SD would be associated with similar short term outcomes as ED. Method. Children, 3–17 years of age, referred for possible CD were eligible for SD given aTTG level ≥200 U/mL, confirmed by repeat aTTG and HLA haplotypes. Gastrointestinal permeability, assessed using sugar probes, and inflammation, assessed using fecal calprotectin (FC), at baseline and after one year on a GFD were compared to patients who had ED. Results. Enrolled SD (n=40) and ED (n=48) patients had similar demographics. ED and SD groups were not different in baseline lactulose: mannitol ratio (L : M) (0.049 versus 0.034; p=0.07), fractional excretion of sucrose (%FES; 0.086 versus 0.092; p=0.44), or fecal calprotectin (FC; 89.6 versus 51.4; p=0.05). At follow-up, urine permeability improved and was similar between groups, L : M (0.022 versus 0.025; p=0.55) and %FES (0.040 versus 0.047; p=0.87) (p>0.05). FC improved but remained higher in the SD group (37.1 versus 15.9; p=0.04). Conclusion. Patients on the GFD showed improved intestinal permeability and mucosal inflammation regardless of diagnostic strategy. This prospective study supports that children diagnosed by SD have resolving mucosal disease early after commencing a GFD

A typology of transition readiness for adolescents with congenital heart disease in preparation for transfer from pediatric to adult care

This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/)Purpose: To understand the effectiveness of a nurse-led transition intervention by analyzing qualitative data generated in the context of a clinical trial. Design & methods: Qualitative study of a two-session transition intervention conducted by registered nurses at two sites. Adolescents aged 16–17 years with moderate or complex congenital heart disease (CHD) had been randomized to a two-session transition intervention or usual care. Session 1 emphasized patient education including creation of a health passport and goal setting. Session 2, two months later, emphasized self-management. Qualitative data extracted from intervention logs, field notes and audio recordings of the sessions were analyzed for content and themes. Results: Data from 111 transition intervention sessions with 57 adolescents were analyzed. Creating a health passport, goal setting, and role-plays were the elements of the intervention most valued by participants. A typology of transition readiness was identified: 1) the independent adolescent (5%), already managing their own care; 2) the ready adolescent who was prepared for transition after completing the intervention (46%); 3) the follow-up needed adolescent who was still in need of extra coaching (26%), and 4) the at-risk adolescent who warranted immediate follow-up (14%). Baseline knowledge and transition surveys scores validated the typology. Conclusions: A two-session nursing intervention met the transition needs of approximately half of adolescents with CHD. However, additional transition-focused care was needed by 40% of participants (groups 3 and 4). Practice implications: These findings will guide pediatric nurses and other healthcare professionals to optimize an individualized approach for ensuring transition readiness for adolescents with CHD.This study was funded by a Grant-in-Aid from the Heart and Stroke Foundation of Canada [NA 000264, 2012-2015] and by the Bridge Funding Program of the Canadian Institutes of Health Research [FRN 120780, 2013-2015] with A. S. Mackie as Principal Investigator

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