Barriers and Facilitators to the Implementation of Family-Centered Technology in Complex Care: Feasibility Study.

BACKGROUND: Care coordination is challenging but crucial for children with medical complexity (CMC). Technology-based solutions are increasingly prevalent but little is known about how to successfully deploy them in the care of CMC. OBJECTIVE: The aim of this study was to assess the feasibility and acceptability of GoalKeeper (GK), an internet-based system for eliciting and monitoring family-centered goals for CMC, and to identify barriers and facilitators to implementation. METHODS: We used the Consolidated Framework for Implementation Research (CFIR) to explore the barriers and facilitators to the implementation of GK as part of a clinical trial of GK in ambulatory clinics at a children's hospital (NCT03620071). The study was conducted in 3 phases: preimplementation, implementation (trial), and postimplementation. For the trial, we recruited providers at participating clinics and English-speaking parents of CMC<12 years of age with home internet access. All participants used GK during an initial clinic visit and for 3 months after. We conducted preimplementation focus groups and postimplementation semistructured exit interviews using the CFIR interview guide. Participant exit surveys assessed GK feasibility and acceptability on a 5-point Likert scale. For each interview, 3 independent coders used content analysis and serial coding reviews based on the CFIR qualitative analytic plan and assigned quantitative ratings to each CFIR construct (-2 strong barrier to +2 strong facilitator). RESULTS: Preimplementation focus groups included 2 parents (1 male participant and 1 female participant) and 3 providers (1 in complex care, 1 in clinical informatics, and 1 in neurology). From focus groups, we developed 3 implementation strategies: education (parents: 5-minute demo; providers: 30-minute tutorial and 5-minute video on use in a clinic visit; both: instructional manual), tech support (in-person, virtual), and automated email reminders for parents. For implementation (April 1, 2019, to December 21, 2020), we enrolled 11 providers (7 female participants, 5 in complex care) and 35 parents (mean age 38.3, SD 7.8 years; n=28, 80% female; n=17, 49% Caucasian; n=16, 46% Hispanic; and n=30, 86% at least some college). One parent-provider pair did not use GK in the clinic visit, and few used GK after the visit. In 18 parent and 9 provider exit interviews, the key facilitators were shared goal setting, GK's internet accessibility and email reminders (parents), and GK's ability to set long-term goals and use at the end of visits (providers). A key barrier was GK's lack of integration into the electronic health record or patient portal. Most parents (13/19) and providers (6/9) would recommend GK to their peers. CONCLUSIONS: Family-centered technologies like GK are feasible and acceptable for the care of CMC, but sustained use depends on integration into electronic health records. TRIAL REGISTRATION: ClinicalTrials.gov NCT03620071; https://clinicaltrials.gov/ct2/show/NCT03620071.

Experiences, Motivations, and Perceived Impact of Participation in a Facebook-Based Support Group for Caregivers of Children and Youth With Complex Care Needs: Qualitative Descriptive Study.

BACKGROUND: Caregivers of children and youth with complex care needs (CCNs) often require considerable support to ensure the well-being of their families. Social media present an opportunity to better support caregivers through computer-mediated communication for social support. Peer-to-peer (P2P) support groups are a way in which caregivers are accessing needed support; however, the experiences of caregivers who use these groups and the perceived impact that participation has on caregivers of children and youth with CCNs are not known. OBJECTIVE: This study aimed to explore the experiences of caregivers of children and youth with CCNs who use a Facebook-based P2P support group to communicate, understand their motivations to use the group, and investigate its perceived impact on knowledge of programs and services and sense of community belonging among caregivers. METHODS: A qualitative descriptive design was used to explore the experiences and perceived impact of a Facebook-based (Meta Platforms) P2P support group for caregivers of children and youth with CCNs in New Brunswick, Canada. The group was launched on the web in October 2020, during the COVID-19 pandemic, and resulted in 108 caregivers joining the group. A web-based survey was distributed, and semistructured interviews were conducted in February 2021 with a subsample of members. Thematic analysis was used to identify and report patterns related to caregivers' experiences and perceived impacts of participation. RESULTS: A subsample of members in the Facebook group completed the web-based survey (39/108, 36.1%) and interviews (14/108, 12.9%). A total of 5 themes emerged from the interviews: safe space, informational support and direction, web-based connection with peers, impact on knowledge of programs and services, and degree of community belonging. Participants reported joining the group to obtain geography-specific information support and connect with peers. Many participants reported an improvement in their knowledge of programs and services and felt connected to the community; however, the short observation period and diversity among the caregiver population were cited as barriers to community belonging. CONCLUSIONS: Social media present an important opportunity to facilitate the exchange of support between patients and caregivers in an accessible and curated environment. Findings from this study suggest that involvement in web-based, geography-specific P2P support groups can influence perceived knowledge of services and resources and sense of community belonging among caregivers of children and youth with CCNs. Furthermore, this study provides insight into the experiences and motivations of caregivers of children and youth with CCNs who participate in a private social media environment.

Caring for Children With Medical Complexity in the Early COVID-19 Pandemic in an Ambulatory Primary Care Setting.

BACKGROUND: Children with medical complexity (CMC) have multiple chronic conditions and require a high level of coordinated healthcare. The risk of COVID-19 among CMC is unclear. OBJECTIVES: We aim to identify and describe the prevalence and experience of COVID-19 among CMC and their caregivers during the initial weeks of the COVID-19 pandemic in the NY metropolitan area. METHODS: We performed a cross-sectional study of children enrolled in a structured clinical program for CMC at a large urban, academic general pediatrics practice in NY. RESULTS: In our patient population (n = 132), 16 patients had a known exposure with parents being the most common exposure in 37.5% (n = 6). Two patients were hospitalized for COVID-19 while the remainder of the confirmed or suspected COVID-19 cases were managed as an outpatient. CONCLUSIONS: Common sources of COVID-19 exposure were family members and home care providers. Almost all of our patients experienced interruption of medical care including missed therapies and visits.

The unintended consequences of COVID-19 public health measures on health care for children with medical complexity.

AIM: The aim of this work is to explore the unintended consequences of pandemic public health measures on health care service usage by children with medical complexity. BACKGROUND: Medical complexity is characterized by the presence of complex, chronic conditions requiring specialized care, substantial health needs, functional dependence and/or limitations, and frequent health care usage. Children with medical complexity are among the highest users of paediatric health care services. METHODS: A web-based, cross-sectional survey was conducted in British Columbia, Canada, between August and September 2020. Inclusion criteria were (a) parent/guardian of at least one child (age 0 to 18 years, inclusive) with medical complexity and (b) residence in British Columbia. A convenience sample of 156 parents completed the survey. Data were analysed using a series of descriptive analyses (frequencies, cross-tabulations) and inferential analyses (binary logistic regressions). RESULTS: Respondents provided information for 188 children with medical complexity. Access to allied health therapies (physio, occupational, and speech and language) and medical specialists drastically declined in the initial months of the pandemic, with a shift from in-person to virtual platforms for these aspects of care. Regression modelling indicated that age and family structure influenced decisions to use in-patient hospital services. CONCLUSIONS: Public health measures implemented in the initial months of the pandemic decreased access to health care services for children with medical complexity. The long-term ramifications of these measures are unknown. Family structure was found to influence decisions to avoid accessing Emergency Department care. Given the volume of services used by these children, paediatric hospital leaders need to take their unique needs into consideration in disaster planning to ensure minimal disruptions in care.