The Experience of Parental Caregiving for Children With Medical Complexity.

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.

An organizational approach to improve staff resiliency and wellness during the COVID-19 pandemic.

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.

The Experience of Housing Needs Among Families Caring for Children With Medical Complexity.

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.

Online Acceptance and Commitment Therapy and Nutrition Workshop for Parents of Children with Inflammatory Bowel Disease: Feasibility, Acceptability, and Initial Effectiveness.

Parents of children with inflammatory bowel disease (IBD) are important members of their healthcare team and influence their child's adaptation to disease. The primary aim of this research was to test the feasibility and acceptability of a three-session online parent workshop based on acceptance and commitment therapy (ACT) and address concerns about eating well and nutrition in IBD. The secondary aim was to explore the initial effectiveness of this workshop in parent reported psychological flexibility, mindfulness, experiential avoidance, cognitive fusion, valued living, and symptoms of depression, anxiety, and stress. We used a single arm pragmatic prospective study design with parents of children attending the IBD program at a tertiary pediatric healthcare centre in Canada. Mixed methods patient reported outcomes were measured at baseline, immediate post participation, and 3 months post participation in the workshop. Thirty-seven parents enrolled in the study and feasibility and acceptability goals were largely met. Parents qualitatively described changes to their parenting, what aspects of the workshop were most helpful, and targeted feedback on how to improve workshop. Findings suggest that providing parents of children with IBD a brief online ACT workshop including nutrition guidance is feasible and leads to changes in parenting behaviours.

The parental experience and perceptions of blenderized tube feeding for children with medical complexity.

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.

Toward an Understanding of Advance Care Planning in Children With Medical Complexity.

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.

Evaluating Curricular Modules in the Care of Children With Medical Complexity: A Mixed-Methods Randomized Controlled Trial.

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 2 residency programs were randomly assigned to participate in interactive modules on: 1) clinical assessment, care planning, and technological dependency or 2) noncomplex care topics. The primary outcome was mean score on an Observed Structured Clinical Examination (OSCE) of tracheostomy care. Semistructured interviews were conducted postintervention 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 = .48). Qualitative analysis revealed 3 emerging themes related to resident self-efficacy: building a system of care, navigating uncertainty, and professional identity formation. CONCLUSIONS: 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.

Care maps and care plans for children with medical complexity.

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.

"All the ward's a stage": a qualitative study of the experience of direct observation of handoffs.

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.

Care maps for children with medical complexity.

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.

Health system strategies supporting transition to adult care.

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.