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Exploring factors related to resilience in youth with inflammatory bowel disease may elucidate modifiable risk factors and inform interventions. Yet, how resilience factors may impact positive adaptation for youth with inflammatory bowel disease is not clear. We conducted an exploratory qualitative study on specific factors that bolster resilience in youth with IBD from health care provider, parent and youth perspectives. Twelve multidisciplinary health care providers, 15 parents of youth with IBD, and 15 youth with IBD were interviewed about their perspectives on resilience in youth with IBD. Inductive content analysis was conducted on the transcripts using a stepwise process of open coding, category creation, and abstraction. Higher level categories were identified across the three participant groups: individual (acceptance of IBD, openness about living with IBD, upholding a sense of self, sense of control), familial (disease self-management), and environmental (relationship with the medical team and meaningful social support). This is the first study to highlight that these three participant groups identified specific characteristics that could be fostered in routine IBD care and targeted by interventions aimed at bolstering resilience in youth with IBD.

Objectives Parents of children with medical complexity are often expected to implement complicated plans of care, such as enteral tube feeding, to support the health of their child. Enteral feeding can have psychosocial implications for the parent, child, and family. Blenderized tube feeding (BTF) refers to the administration of pureed food and drinks through a feeding tube. Little is known regarding parents’ experiences with BTF. Therefore, the purpose of this qualitative study was to understand the lived experience of BTF from the parent’s perspective. Methods This qualitative study was a grounded theory analysis utilizing semi-structured interviews of parents who provided at least 50% of their child’s diet through BTF. Participants were recruited using purposive sampling from the Complex Care Program at a tertiary care paediatric centre. Interviews were conducted until thematic saturation was achieved. Themes were identified using constant comparative analysis of transcribed interviews. Results Parents (n=10) felt that BTF positively affected the experience of tube feeding and enhanced their child’s health and wellbeing. Parents described BTF as a means of self-empowerment and a mechanism to normalize feeding and care for the entire family. Despite reporting BTF as more time consuming than formula feeding, all parents were satisfied with having made the change, and planned on continuing the diet. Conclusion BTFs can improve the experience of tube feeding and positively address some of the negative psychosocial implications of enteral tube feeding, providing a sense of normalcy and control for parents caring for a child with medical complexity., Graphical Abstract

Objective Children with medical complexity (CMC) are a growing population, yet training in complex care varies across pediatric residency programs. The purpose of this study was 1) to evaluate the effectiveness of a curriculum for pediatric residents in improving performance in a simulated clinical scenario; and 2) to explore residents’ perceived self-efficacy in caring for CMC. Methods A randomized controlled trial was conducted supplemented by qualitative inquiry. Pediatric residents from two residency programs were randomly assigned to participate in interactive modules on: (a) clinical assessment, care planning and technological dependency or (b) non-complex care topics. The primary outcome was mean score on an Observed Structured Clinical Examination (OSCE) of tracheostomy care. Semi-structured interviews were conducted post-intervention and analyzed using qualitative content analysis. Results Ninety-four eligible residents were randomized. Residents who attended all modules and the OSCE and consented to participate [intervention (n=20) and control (n=24)] were included in the final analysis. At baseline, few (9%) reported being comfortable caring for CMC. There was no significant difference in mean OSCE score between intervention and control groups (39.0±1.1 vs. 38.0±1.0, p=0.48). Qualitative analysis revealed three emerging themes related to resident self-efficacy: building a system of care, navigating uncertainty and professional identity formation. Conclusion A standardized complex care curriculum delivered in a classroom setting did not lead to improved performance in an OSCE station despite increased resident-reported self-efficacy in approaching care for CMC. These findings highlight the need for multidimensional educational interventions and assessments in complex care.

Healthcare worker burnout is a well-established phenomenon known to affect an individual's mental state, and has been shown to be diminished amongst individuals with higher levels of resilience. From a leadership perspective, practices that drive and inspire others to demonstrate resilience and surpass their own expectations fosters a resilient culture and allows employees to view adversity as an opportunity while knowing that support is omnipresent. In this paper, we describe and evaluate the outcomes of a virtual organizational intervention during the COVID-19 pandemic aimed to reduce healthcare staff burnout, and improve their levels of resilience, well-being, and self-compassion. Participants reported the workshops were relevant and provided strategies for wellness that were easy to incorporate into their daily routine. By nurturing one's own personal well-being through resiliency strategies learned in this educational series, staff can enact strategies to care for themselves, which in turn can contribute to organizational wide healthy work environments, improved health system outcomes, and enhanced patient care.

Children with medical complexity (CMC) have complex chronic conditions with significant functional impairment, contributing to high caregiving demand. This study seeks to explore impacts of parental caregiving for CMC. Fifteen caregivers of CMC followed at a tertiary care hospital participated in semi-structured interviews. Interviews were concurrently analyzed using a qualitative description framework until thematic saturation was reached. Codes were grouped by shared concepts to clarify emergent findings. Four affected domains of parental caregiver experience with associated subthemes (in parentheses) were identified: personal (identity, physical health, mental health), family (marriage, siblings, family quality of life), social (time limitations, isolating lived experience), and financial (employment, medical costs, accessibility costs). Despite substantial challenges, caregivers identified two core determinants of personal resilience: others’ support (hands-on, interpersonal, informational, material) and a positive outlook (self-efficacy, self-compassion, reframing expectations). Further research is needed to understand the unique needs and strengths of caregivers for this vulnerable population.

BACKGROUND AND OBJECTIVES Caregivers of children with medical complexity (CMC) face many stressors related to their child’s medical condition(s). Financial stress and its impact on housing has been reported to be a challenge among this population. However, unique housing challenges specific to CMC, including disability accommodations in the home and housing space and layout, have yet to be examined in the literature. METHODS We conducted 20 individual semistructured interviews with parents of CMC. Interviews were recorded, coded, and analyzed by using thematic analysis to emphasize, examine, and record patterns of meaning within the data. RESULTS Eighteen mothers and 2 fathers participated in individual interviews. Two major themes and subthemes (in parentheses) were identified: (1) the impact of health on housing (housing preferences, housing possibilities, and housing outcome as a trade-off) and (2) the impact of housing on health (health of the caregiver and health of the child). Parents had preferences regarding the location and layout of their home specific to their child’s illness and medical needs. In addition, parents indicated their child’s illness affected their income and home ownership status, which in turn shaped their housing possibilities. The location and layout of the family home was often the result of a trade-off between the caregiver’s housing preferences and possibilities. CONCLUSIONS Housing outcomes among CMC are often the result of a trade-off between housing preferences and possibilities, both of which are influenced by the child’s health status. Policy changes targeting housing accessibility and affordability are vital to support the health of CMC.

BACKGROUND AND OBJECTIVES:Children with medical complexity (CMC) often have multiple life-limiting conditions with no unifying diagnosis and an unclear prognosis and are at high risk for morbidity and mortality. Advance care planning (ACP) conversations need to be uniquely tailored to this population. Our primary objective for this study was to develop an in-depth understanding of the ACP experiences from the perspectives of both parents and health care providers (HCPs) of CMC.METHODS:We conducted 25 semistructured interviews with parents of CMC and HCPs of various disciplines from a tertiary pediatric hospital. Interview guide questions were focused on ACP, including understanding of the definition, positive and negative experiences, and suggestions for improvement. Interviews were conducted until thematic saturation was reached. Interviews were audio recorded, transcribed verbatim, coded, and analyzed using content analysis.RESULTS:Fourteen mothers and 11 HCPs participated in individual interviews. Interviews revealed 4 major themes and several associated subthemes (in parentheses): (1) holistic mind-set, (2) discussion content (beliefs and values, hopes and goals, and quality of life), (3) communication enhancers (partnerships in shared decision-making, supportive setting, early and ongoing conversations, consistent language and practice, family readiness, provider expertise in ACP discussions, and provider comfort in ACP discussions), and (4) the ACP definition.CONCLUSIONS:Family and HCP perspectives revealed a need for family-centered ACP for CMC and their families. Our results aided the development of a family-centered framework to enhance the delivery of ACP through a holistic mind-set, thoughtful discussion content, and promoting of conversation enhancers.

Introduction The support of families in the care of children with medical complexity (CMC) requires the integration of health care providers' (HCPs') medical knowledge and family experience. Care plans largely represent HCP information, and care maps demonstrate the family experience. Understanding the intersection between a care plan and a care map is critical, as it may provide solutions to the widely recognized tension between HCP-directed care and patient- and family-centered care (PFCC). Method This study used qualitative methods to explore the experience and usefulness of care maps. Parents of CMC who already had a care plan, created care maps (n = 15). Subsequent interviews with parents (n = 15) and HCPs (n = 30) of CMC regarding both care maps and care plans were conducted and analyzed using thematic analysis. Results Data analysis exploring the relationship and utility of care plans and care maps revealed six primary themes related to using care plans and care maps that were grouped into two primary categories: (a) utility of care plans and maps; and (b) intersection of care plans and care maps. Discussion Care plans and care maps were identified as valuable complementary documents. Their integration offers context about family experience and respects the parents' experiential wisdom in a standard patient care document, thus promoting improved understanding and integration of the family experience into care decision making.

Aim Children with medical complexity require multiple providers and services to keep them well and at home. A care map is a patient/family-created diagram that pictorially maps out this complex web of services. This study explored what care maps mean for families and healthcare providers to inform potential for clinical use. Method Parents (n=15) created care maps (hand drawn n=10 and computer-generated n=5) and participated in semi-structured interviews about the process of developing care maps and their perceived impact. Healthcare providers (n=30) reviewed the parent-created care maps and participated in semi-structured interviews. Data were analysed for themes and emerging theory using a grounded theory analytical approach. Results Data analysis revealed 13 overarching themes that were further categorized into three domains: features (characteristics of care maps), functions (what care maps do), and emerging outcomes (benefits of care map use). These domains further informed a definition and a theoretical model of how care maps work. Interpretation Our findings suggest that care maps may be a way of supporting patient- and family-centred care by graphically identifying and integrating experiences of the family as well as priorities for moving forward. What this paper adds Care maps were endorsed as a useful tool by families and providers. They help healthcare providers better understand parental priorities for care. Parents can create care maps to demonstrate the complex burden of care. They are a unique visual way to incorporate narrative medicine into practice.

Direct observation of clinical skills is central to assessment in a competency-based medical education model, yet little is known about how direct observation is experienced by trainees and observers. The objective of the study is to explore how direct observation was experienced by residents and faculty in the context of the I-PASS Handoff Study. In this multi-center qualitative study, we conducted focus groups and semi-structured interviews of residents and faculty members at eight tertiary pediatric centers in North America that implemented the I-PASS Handoff Bundle. We employed qualitative thematic analysis to interpret the data. Barriers to and strategies for direct observation were described relating to the observer, trainee, and clinical environment. Residents and faculty described a mutual awareness that residents change their performance of handoffs when observed, in contrast to their usual behavior in a clinical setting. Changes in handoff performance may depend on the nature of the observer or ‘audience’. Direct observation also highlighted the importance of handoffs to participants, recognized as a clinical activity that warrants feedback and assessment. Dramaturgical theory can be used to understand our finding of ‘front-stage’ (observed) versus ‘backstage’ (unobserved) handoffs as distinct performances, tailored to an “audience”. Educators must be cognizant of changes in performance of routine clinical activities when using direct observation to assess clinical competence.

BACKGROUND Children with medical complexity (CMC) represent a growing population in the paediatric healthcare system. CMCs’ multiple health needs, illness severity, and fragility lead to a high degree of caregiver burnout, parental employment loss, and other social and financial consequences. Healthcare providers must consider a holistic view of the family, including consideration of social determinants of health [SDOH]: socio-economic status, employment, quality of housing, availability of social support, and access to healthcare services. This study addresses a gap in current research by exploring how caring for a CMC exacerbates social inequalities, and how these challenges may be mitigated. OBJECTIVES 1. What are the SDOH impacting CMC and their families? 2. How do families report the impact of their child’s medical complexity on their social circumstances? DESIGN/METHODS A qualitative description approach was used to enable rich data collection through semi-structured interviews until thematic saturation was reached. Nine interviews were conducted with CMC caregivers who were chosen by purposeful sampling. The interview guide was developed by expert consultation and iteratively refined. Ethics approval and written consent were obtained. Interviews were recorded and transcribed verbatim. Three team members independently coded the interviews for recurrent themes to inform qualitative content analysis. RESULTS Caregiving for a CMC is all-consuming, requiring parents to take on roles including planner, medical professional, medical educator, and advocate. Parents of CMC report three major areas negatively impacted by caregiving: 1) physical and mental health; 2) personal relationships; and 3) finances. Additionally, three themes emerged describing enablers for resiliency: 1) the CMC’s health status when well or stable in hospital; 2) acceptance of one’s limitations as a caregiver and of the family’s ‘new normal’; and 3) broad supports including medical, personal, financial, and educational. CONCLUSION The wellbeing of CMC families is impacted by medical and social factors. An interdisciplinary model of care may offset some of the caregiver’s advocacy and medical educator responsibilities. Paediatricians can support families of CMC by providing comprehensive care for all components of the child’s health status, and by including routine assessment of the family’s SDOH. Finally, explicit discussion about parental expectations and caregiver burnout helps foster a positive therapeutic relationship with the family.

Background The transition from paediatric to adult care is associated with poor clinical outcomes, increased costs and low patient and family satisfaction. However, little is known about health system strategies to streamline and safeguard care for youth transitioning to adult services. Moreover, the needs of children and youth are often excluded from broader health system reform discussions, leaving this population especially vulnerable to system ‘disintegration’. Objectives (1) To explore the international policy profile of paediatric-to-adult care transitions, and (2) to document policy objectives, initiatives and outcomes for jurisdictions publicly committed to addressing transition issues. Methods An international policy scoping review of all publicly available government documents detailing transition-related strategies was completed using a web-based search. Our analysis included a comparable cohort of nine wealthy Organisation for Economic Co-operation and Development (OECD) jurisdictions with Beveridge-style healthcare systems (deemed those most likely to benefit from system-level transition strategies). Results Few jurisdictions address transition of care issues in either health or broader social policy documents. While many jurisdictions refer to standardised practice guidelines, a few report the intention to use powerful policy levers (including physician remuneration and non-physician investments) to facilitate the uptake of best practice. Most jurisdictions do not address the policy infrastructure required to support successful transitions, and rigorous evaluations of transition strategies are rare. Conclusions Despite the well-documented risks and costs associated with a poor transition from paediatric to adult care, little policy attention has been paid to this issue. We recommend that healthcare providers engage health system planners in the design and evaluation of system-level, policy-sensitive transition strategies.

Objectives To assess use, utility and impact of transition interventions designed to support and empower self-management in youth with chronic health conditions during transition into adult healthcare. Design A 4-year mixed-method prospective cohort study. Setting 2 academic paediatric hospitals (13 clinics) in Canada. Participants 50 adolescents (42% male; mean age 17.9±0.9 years; 20 underlying diagnoses) with transfer to adult care planned within 1 year. Interventions The Youth KIT (an organisational tool that includes goal setting activities); an online transition mentor. Main outcome measures Frequency of use, utility and impact of the transition interventions; goal achievement; post-transfer qualitative interviews with youth. Results 50 participants were enrolled during their last year of paediatric care; 36 (72%) were followed into adult care. All participants had access to the transition interventions from enrolment until the end of the study (exposure time: 12–47 months). Most youth (85%) reported using the medical/health section of the Youth KIT at least once; 20 (40%) participants engaged in chats with the mentor. The overall perceived utility of both interventions was modest; the Youth KIT received the highest ratings for ‘help with goal setting’: (mean (SD): 4.2 (2.3)) on a 7-point Likert scale. 45 (90%) participants set 294 transition goals. Goal achievement performance and satisfaction increased over time (p≤0.001). The qualitative evidence revealed reasons behind the variability in use and utility of the interventions, the interconnectedness of life-course and healthcare transitions, and the need for stronger partnerships between paediatric and adult healthcare systems. Conclusions Participants’ perceptions about the utility of the Youth KIT and the online mentor were modest. Transition supports need to be carefully tailored, timed and integrated into healthcare systems. Individualised goal setting may be an important ‘active ingredient’ in optimising transition supports and outcomes. Interventions that focus on youth only are insufficient for empowering self-management.