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Background and objective Children with medical complexity (CMC) have chronic and severe conditions leading to medical fragility. CMC represent less than 1% of children but account for one-third of paediatric healthcare expenditures. Enrollment to a complex care program (CCP) decreases health care resource utilization while improving parental satisfaction. An in-depth understanding of how these changes operate in real-world setting is needed to further support CMC and their families. This study aimed at assessing the possible reasons for a decrease in emergency department (ED) visits and hospitalization length of stay related to enrollment to a CCP, based on parental perspectives. Study design Using a qualitative approach, data were collected using in-depth, semi-structured interviews with parents of CMC enrolled in a CCP from a university hospital centre in Montreal, Canada. The interview guide was co-constructed by an interdisciplinary team, including a parent partner and a clinical nurse coordinator. Themes have been identified inductively, using thematic analysis. Results Parents identified personalized care , family empowerment and guidance as enablers arising from the CCP that contributed to the decrease in hospital-delivered care utilization. Improvement in medical baseline condition was also identified as a contributing factor, while not necessarily related to program's support. Conclusions In this study, we identified personalized care, parental empowerment, and guidance as three strategies for a CCP to potentially decrease ED visits and hospital length of stay, from the parents' perspective. Parents identified the clinical nurse coordinator as playing a central role in supporting the implementation of these strategies. [ABSTRACT FROM AUTHOR]

Drawing on the experience of training graduate students and researchers in qualitative and mixed-methods analysis since the mid-1990s, the authors reflect on the evolution of a multidisciplinary graduate course developed in a Canadian university since 2007. The hands-on/hands-off course design based on the use of NVivo was developed in parallel with a conceptual and reflexive position on methodology and multidisciplinarity in the context of an action research supported by their institution. This article exposes the four basic components of the course and the constructivist assessment model based on a term-long team analysis of original data created specifically for this purpose. The balance between collective and individual work, in-class and online exchanges, hands-on experience with the software and hands-off reflection is described and compared to recent pedagogical literature on the subject. The interest of this blended approach in fostering the development of the methodological expertise expected from researchers and graduate students, as well as the main issues and challenges facing this type of training in a research environment characterised by new approaches and tools, are discussed.

Aim: To describe parental perspective on health and developmental outcomes of their preterm child in relation to level of neurodevelopmental impairment (NDI). Methods: A parental survey about their children aged 15–36 months corrected age born ˂29 weeks' gestation investigated parental concerns and positive attributes. Parental responses in relation to their child's level of NDI were examined using Kruskal‐Wallis and chi‐square for trend tests. Results: One hundred ninety‐nine parental responses were obtained for 163 children, including 44% with NDI. Vast majority of parents reported their children were developing well with good physical health. All parents, irrespective of NDI, reported their children were happy and had a positive personality. Appreciation of social interactions was higher for parents of children without versus with NDI (96% vs. 87%, p = 0.039). Parents of children with NDI were more likely to express concerns than those without NDI. Overall, development was the most common area of concern (45%), followed by the child's future (40%) and physical health (35%). Conclusion: Parents of preterm children report many positive points and concerns, some of which are not examined in neonatal follow‐up data. These parental perspectives could be used to inform parents of preterm infants, both antenatally and in the neonatal unit. [ABSTRACT FROM AUTHOR]

Grieving a child following cancer is a substantially difficult task. The objectives of this research were: 1) to describe current quality of life (QoL), psychological distress and symptoms of grief of bereaved parents, and 2) to explore the role of possible contributors of QoL and psychological distress. Forty-six parents (32 mothers) of children who died of cancer were surveyed on their QoL, distress, and complicated grief. Data were analyzed using multiple linear regression. Parents had a high frequency of grieving symptoms (58%). Mothers reported more retrospective grief symptoms than fathers when describing the year after child death. Current lower mental well-being was associated with experiencing higher retrospective grief symptoms, a shorter period since child death, and being a father. Hence, parents experienced disturbances even long after child death. Mothers and fathers may present specificities that should be considered when developing supportive activities for this vulnerable population. [ABSTRACT FROM AUTHOR]

Background and Objective: Neonatal outcome research and clinical follow-up principally focus on neurodevelopmental impairment (NDI) after extremely preterm birth, as defined by the scientific community, without parental input. This survey aimed to investigate parental perspectives about the health and development of their preterm children.Methods: Parents of children aged 18 months to 7 years born <29 weeks' gestational age presenting at a neonatal follow-up clinic over a 1-year period were asked to evaluate their children's health and development. They were also asked the following question: 'if you could improve two things about your child, what would they be?' Responses were analysed using mixed methods. Logistic regressions were done to compare parental responses.Results: 248 parents of 213 children (mean gestational age 26.6±1.6 weeks, 20% with severe NDI) were recruited. Parents evaluated their children's health at a median of 9/10. Parental priorities for health improvements were (1) development, mainly behaviour, emotional health and language/communication (55%); (2) respiratory heath and overall medical fragility (25%); and (3) feeding/growth issues (14%). Nineteen per cent explicitly mentioned 'no improvements'. Parents were more likely to state 'no improvements' if child had no versus severe NDI OR 4.33 (95% CI 1.47 to 12.75)) or if parents had no versus at least a high school diploma (OR 4.01 (95% 1.99 to 8.10)).Conclusions: Parents evaluate the health of their preterm children as being very good, with positive perspectives. Parental concerns outside the developmental sphere should also be addressed both in clinical follow-up and research. [ABSTRACT FROM AUTHOR]

Adolescents and young adult survivors of pediatric brain tumors (AYA-PBTS) often experience difficulties with social skills, pursuit of studies and employment. This study explored pediatric long-term survivors' perspective on their post-treatment needs and ways to improve resources and interventions. We used an original method of three sequential focus group interviews by adding the perspectives of survivors (15–22 years), parents and health professionals (total N = 22). Participants were recruited using purposive sampling from the long-term follow-up clinic at a Canadian tertiary hospital. We used computer-assisted analysis to draw themes from each group and compare thematic content across groups. Categorization of participants' responses resulted in three domains: personal life, education and work. Participants mentioned the improvement of communication tools to facilitate access to timely information, the organization of counseling to improve employment integration, and tailoring interventions to optimize the return to daily activities in aftercare. Subsequent inductive analysis revealed three overarching trends among groups: multipurpose social networking, AYA-PBTS-specific information websites and transition tools and procedures. This study identified solutions for AYA-PBTS' specific needs in aftercare. This population needs up-to-date post-treatment information and refined outreach procedures. Future research should define and prioritize these suggested solutions. [ABSTRACT FROM AUTHOR]