Search

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

Background Complex Care for Kids Ontario (CCKO) is a multi-year strategy aimed at expanding a hub-and-spoke model to deliver coordinated care for children with medical complexity (CMC) across Ontario. Objective This paper aims to identify the facilitators, barriers and lessons learned from the implementation of the Ontario CCKO strategy. Method Alongside an outcome evaluation of the CCKO strategy, we conducted a process evaluation to understand the implementation context, process and mechanisms. Semi-structured interviews were conducted with 38 healthcare leaders, clinicians and support staff from four regions involved in CCKO care delivery and/or governance. Results Facilitators to CCKO implementation were sustained engagement of system-wide stakeholders, inter-organizational partnerships, knowledge sharing and family engagement. Barriers to CCKO implementation were resources and funding, fragmentation of care, aligning perspectives between providers and clinical staff recruitment and retention. Conclusion A flexible approach is required to implement a complex, multi-centre policy strategy. Other jurisdictions considering such a model of care delivery would benefit from attention to contextual variations in implementation setting, building cross-sector engagement and buy-in, and offering continuous support for modifications to the intervention as and when required.

ImportanceChildren with medical complexity (CMC) have chronic conditions and high health needs and may experience fragmented care.ObjectiveTo compare the effectiveness of a structured complex care program, Complex Care for Kids Ontario (CCKO), with usual care.Design, Setting, and ParticipantsThis randomized clinical trial used a waitlist variation for randomizing patients from 12 complex care clinics in Ontario, Canada, over 2 years. The study was conducted from December 2016 to June 2021. Participants were identified based on complex care clinic referral and randomly allocated into an intervention group, seen at the next available clinic appointment, or a control group that was placed on a waitlist to receive the intervention after 12 months.InterventionAssignment of a nurse practitioner–pediatrician dyad partnering with families in a structured complex care clinic to provide intensive care coordination and comprehensive plans of care.Main Outcomes and MeasuresCo-primary outcomes, assessed at baseline and at 6, 12, and 24 months postrandomization, were service delivery indicators from the Family Experiences With Coordination of Care that scored (1) coordination of care among health care professionals, (2) coordination of care between health care professionals and families, and (3) utility of care planning tools. Secondary outcomes included child and parent health outcomes and child health care system utilization and cost.ResultsOf 144 participants randomized, 141 had complete health administrative data, and 139 had complete baseline surveys. The median (IQR) age of the participants was 29 months (9-102); 83 (60%) were male. At 12 months, scores for utility of care planning tools improved in the intervention group compared with the waitlist group (adjusted odds ratio, 9.3; 95% CI, 3.9-21.9; P P = .01).Conclusions and RelevanceThe CCKO program improved the perceived utility of care planning tools but not other outcomes at 1 year. Extended evaluation periods may be helpful in assessing pediatric complex care interventions.Trial RegistrationClinicalTrials.gov Identifier: NCT02928757

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.

IntroductionTechnological and medical advances have led to a growing population of children with medical complexity (CMC) defined by substantial medical needs, healthcare utilisation and morbidity. These children are at a high risk of missed, fragmented and/or inappropriate care, and families bear extraordinary financial burden and stress. While small in number (Methods and analysisOur primary objective is to evaluate the CCKO intervention using a randomised waitlist control design. The waitlist approach involves rolling out an intervention over time, whereby all participants are randomised into two groups (A and B) to receive the intervention at different time points determined at random. Baseline measurements are collected at month 0, and groups A and B are compared at months 6 and 12. The primary outcome is the family-prioritized Family Experiences with Coordination of Care (FECC) survey at 12 months. The FECC will be compared between groups using an analysis of covariance with the corresponding baseline score as the covariate. Secondary outcomes include reports of child and parent health outcomes, health system utilisation and process outcomes.Ethics and disseminationResearch ethics approval has been obtained for this multicentre RCT. This trial will assess the effect of a large population-level complex care intervention to determine whether dedicated key workers and coordinated care plans have an impact on improving service delivery and quality of life for CMC and their families.Trial registration numberNCT02928757.

BACKGROUND Children with medical complexity (CMC), are defined by at least one chronic condition, functional limitation requiring technology support, multiple subspecialist involvement, and high healthcare utilization. A potentially significant social determinant that has yet to be examined in this population is that of “housing need.” According to the Canada Mortgage and Housing Corporation, “housing need” refers to housing that is crowded, unaffordable, or in need of major repairs. Given the known associations between housing and health, we hypothesize that housing need could be particularly relevant in CMC. Population-specific housing considerations may include in-home medical services, housing space, and disability accommodations. OBJECTIVES 1) Determine the prevalence of housing need in families with CMC and 2) Explore the experience and meaning of housing need of caregivers of CMC. DESIGN/METHODS We conducted a mixed methods study using questionnaires and semi-structured interviews. Recruitment occurred through a tertiary paediatric hospital. Research ethics board approval was obtained. All participants were English-speaking primary caregivers of CMC living in the same household. Questionnaires were completed in person, by phone, or online via REDCap, a secure data collection application. Questionnaires explored safety, affordability, and accommodations and were analyzed using descriptive statistics. Following the questionnaire, participants were invited to be interviewed in person or by phone. Interview questions were developed iteratively and were analyzed using grounded theory. RESULTS Of the 354 eligible caregivers, 93 participated in the questionnaire. A total of 36 caregivers (40%) reported some difficulties paying for housing each month. In addition, 56 participants (62%) described unmet need for accommodations (i.e. a lift, toilet accommodations, etc.). A total of 65 participants (83%) reported that their child’s condition(s) affected their preferred housing location, while 55 participants (70.5%) felt it affected their preferred housing type. Of the fifteen interviews completed, several themes emerged including limited housing options for families with CMC and financial, physical, and mental health consequences of housing challenges. In addition, caregivers felt counseling was lacking on 1) safe evacuation and 2) housing requirements, such as space and equipment, as children age. CONCLUSION This is the first in-depth exploration of housing need amongst families of CMC. Challenges identified include affordability, disability accommodations, and restrictions on housing type and location due to children’s illnesses. Clinicians can support families of CMC by offering counseling on evacuation planning and common housing requirements for CMC.

Proton pump inhibitors (PPIs) are commonly prescribed to infants and children for managing gastroesophageal reflux disease (GERD). Recently published literature illustrates conflicting evidence on the efficacy of PPIs in infants and children. Randomized controlled trials and systematic reviews have demonstrated a lack of efficacy of PPIs, specifically in young infants. Furthermore, emerging evidence also suggests that PPIs are not as benign as once thought, with newer data implicating a potential association of PPIs with an increased risk of respiratory tract infections, gastrointestinal infections, bone fractures, hypomagnesemia, and the occurrence of rebound hyperacidity after discontinuation of PPI therapy. To summarize the emerging data in children, we reviewed the literature to assess the efficacy and safety of PPIs in managing pediatric GERD. Despite conflicting evidence on the efficacy of PPIs, most studies in children demonstrated some benefit when compared with placebo. With respect to the safety of PPIs in children, only a few small studies and case reports indicated a potential association of PPIs with an increased risk of respiratory tract or gastrointestinal infections, bone fractures, and hypomagnesemia; however, many of those studies had their own limitations. From the review, it is clear that further well-designed trials and observational studies are needed to shed more light on the efficacy and safety of PPIs in the pediatric population.