Caregivers Of Youth Research Articles

Caregiver condition management and family functioning after pediatric cancer treatment: Moderation by race and ethnicity.

End of pediatric cancer treatment requires family adjustment. Caregivers who struggle to incorporate the child's condition into family life have poorer family outcomes. To better understand factors that contribute to successful transition off active childhood cancer treatment, we sought to examine caregiver perceived management ability of the youth's condition and family functioning as predictors of caregiver distress, evaluate family functioning as a mediator between perceived ability and distress, and explore race and ethnicity as a moderator between perceived ability and family functioning. Caregivers (N=141) completed measures assessing family management (condition management ability; CMA), family functioning, and distress as part of a clinical education and screening program within 1year of the end of treatment. Bias-corrected bootstrap regression analyses examined mediation and moderated mediation models with patient race and ethnicity as the moderator. The overall mediation model was statistically significant for CMA→family functioning→distress. Race and ethnicity moderated the relationship between CMA and family functioning, but the full model was not significant. CMA was related to family functioning for caregivers of non-Hispanic white youth, but not caregivers of Hispanic youth. Family functioning was related to distress for all caregivers. Family functioning serves as an initial intervention target to reduce caregiver distress. Caregiver perceived management ability of their child's condition is a meaningful predictor of family functioning and distress for caregivers of non-Hispanic white youth, yet CMA may be limited as a screener of family management patterns for diverse populations, and other family management dimension may be more applicable.

Racial and Practical Barriers to Diagnostic and Treatment Services for Black Families of Autistic Youth: A Mixed-Method Exploration.

The present study explored the role race-related barriers and practical barriers to treatment participation play in treatment effectiveness and satisfaction among Black families with autistic youth using a mixed-method approach. In a sample of Black caregivers with autistic youth (N = 101), multiple regressions were conducted to examine the impact of reported racial and practical barriers on parental stress, treatment effectiveness, and treatment satisfaction. Caregivers provided further narratives on their experience navigating diagnostic and treatment services in qualitative interviews. The study demonstrated that Black caregivers of autistic youth are still encountering several racial and logistical barriers when seeking treatment and diagnostic services for their children. These barriers negatively impact caregiver stress and caregiver perceived treatment quality. Contrary to the barriers and stress experienced by Black caregivers, caregivers are generally satisfied with the treatments they are utilizing and find them helpful. The narratives told by caregivers further elucidate the tumultuous experiences of Black caregivers as they seek diagnostic and treatment services for their children. An experience that may be worsened by family, professional, and systemic barriers, and can be improved by advocacy, acceptance, peer and community support, and increased knowledge. Black families of autistic youth call for increased compassion, support, training, and humility among professionals who serve autistic youth.

An Australian online training and support program for caregivers of children and youth with Fetal Alcohol Spectrum Disorder: Families linking with families

ABSTRACT Background: Australia has limited supports to help families where Fetal Alcohol Spectrum Disorder (FASD) impacts children and young people. National Organisation for Fetal Alcohol Spectrum Disorder Australia (NOFASD), in conjunction with the University of Otago, New Zealand, piloted and established a 7-week online program to assist caregivers to develop strategies and supports to help their families live well in a disabling society. Method: The online program, Families Linking with Families (FLWF), was delivered to 88 caregivers. They participated in the weekly 90-minute online program of talks, activities, and interactive conversations. A brief evaluation was undertaken. Results: Participants reported high levels of satisfaction with the content and helpfulness of FLWF. FLWF helped caregivers increase their knowledge of, and skills in, parenting children with FASD, and equipped caregivers to nurture positive peer-to-peer relationships. Conclusions: Specialist FASD caregiver education and support programs are beneficial for caregivers who care for children and youth with FASD. Further research through a randomised control trial could establish the efficacy of the program.

Development and psychometric validation of the Pandemic-Related Traumatic Stress Scale for children and adults.

To assess the public health impact of the COVID-19 pandemic on mental health, investigators from the National Institutes of Health Environmental influences on Child Health Outcomes (ECHO) research program developed the Pandemic-Related Traumatic Stress Scale (PTSS). Based on the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) acute stress disorder symptom criteria, the PTSS is designed for adolescent (13-21 years) and adult self-report and caregiver-report on 3-12-year-olds. To evaluate psychometric properties, we used PTSS data collected between April 2020 and August 2021 from non-pregnant adult caregivers (n = 11,483), pregnant/postpartum individuals (n = 1,656), adolescents (n = 1,795), and caregivers reporting on 3-12-year-olds (n = 2,896). We used Mokken scale analysis to examine unidimensionality and reliability, Pearson correlations to evaluate relationships with other relevant variables, and analyses of variance to identify regional, age, and sex differences. Mokken analysis resulted in a moderately strong, unidimensional scale that retained nine of the original 10 items. We detected small to moderate positive associations with depression, anxiety, and general stress, and negative associations with life satisfaction. Adult caregivers had the highest PTSS scores, followed by adolescents, pregnant/postpartum individuals, and children. Caregivers of younger children, females, and older youth had higher PTSS scores compared to caregivers of older children, males, and younger youth, respectively. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Inequities in Time Spent Coordinating Care for Children and Youth With Special Health Care Needs.

In the United States, caregivers of children and youth with special health care needs (CYSHCN) must navigate complex, inefficient health care and insurance systems to access medical care. We assessed for sociodemographic inequities in time spent coordinating care for CYSHCN and examined the association between time spent coordinating care and forgone medical care. This cross-sectional study used data from the 2018-2020 National Survey of Children's Health, which included 102,740 children across all 50 states. We described the time spent coordinating care for children with less complex special health care needs (SHCN) (managed through medications) and more complex SHCN (resulting in functional limitations or requiring specialized therapies). We examined race-, ethnicity-, income-, and insurance-based differences in time spent coordinating care among CYSHCN and used multivariable logistic regression to examine the association between time spent coordinating care and forgone medical care. Over 40% of caregivers of children with more complex SHCN reported spending time coordinating their children's care each week. CYSHCN whose caregivers spent ≥5h/wk on care coordination were disproportionately Hispanic, low-income, and publicly insured or uninsured. Increased time spent coordinating care was associated with an increasing probability of forgone medical care: 6.7% for children whose caregivers spent no weekly time coordinating care versus 9.4% for<1hour; 11.4% for 1 to 4hours; and 15.8% for ≥5hours. Reducing time spent coordinating care and providing additional support to low-income and minoritized caregivers may be beneficial for pediatric payers, policymakers, and health systems aiming to promote equitable access to health care for CYSHCN.

“That he won't experience life like he should”: Exploring worries of family caregivers of transition-age autistic youth

BackgroundCaregiver (CG) worry, a dimension of CG burden, has rarely been explored in CGs of transition-aged autistic youth. The present study investigated CG, youth, and service characteristics as potential predictors of CG worry and explored expressed concerns from CGs about their autistic youth and their care. MethodData were drawn from a study of 174 family CGs of transition-age autistic youth (age 16–30 years), living in a midwestern metropolitan area. Using a CG worries scale, CGs rated eight worries (e.g., worry about youth’s safety, etc.) experienced in the past six months. An OLS regression model of CG worry focused on predictors of CG characteristics (age, health, financial burden, involvement in youth’s care), youth characteristics (age, social engagement, adaptive functioning, problematic behavior) and service characteristics (access barriers and engagement in transition planning). CG responses to an open-ended question about their greatest worry regarding the youth and their care were analyzed thematically. ResultsCGs were mostly middle-aged mothers, caring for predominantly male (71.8%) ASD youth whose average age was 21. Regression models indicated that CG worry was predicted by problematic behaviors and barriers to accessing services. The expressed CG worries were grouped into four themes, including youth reliance on family CGs, possibilities for the youth’s future, youth relationships, and support for youth. ConclusionsThese findings support the need for improved access to services for transition-aged youth and raise awareness of the need for potential services and interventions to help families manage various worries during this time.

The Psychosocial Impact of the COVID-19 Pandemic on Families of Youth of Color: A Prospective Cohort Study.

Prospectively examine racial and ethnic disparities in exposure to COVID-19-related stressors and their impact on families. A racially, ethnically, and socioeconomically diverse cohort of caregivers of youth (n = 1,581) representative of the population served by a pediatric healthcare system completed the COVID-19 Exposure and Family Impact Scales in Oct/Nov 2020 and March/April 2021. Linear mixed-effects models were used to examine exposure to COVID-19-related events (Exposure), impact of the pandemic on family functioning and well-being (Impact), and child and parent distress (Distress) across time and as a function of race and ethnicity, adjusting for other sociodemographic variables. Exposure and Distress increased over time for all participants. After adjusting for sociodemographic factors, caregivers of Black and Hispanic youth reported greater Exposure than caregivers of White youth and caregivers of Black youth had a greater increase in Exposure over time than caregivers of White youth. Caregivers of White youth reported greater Impact than caregivers of Black and Other race youth. Exposure to and impact of the COVID-19 pandemic on family psychosocial functioning varied by race and ethnicity. Although exposure to COVID-19-related events was greater among Hispanic and non-Hispanic Black families, those of marginalized races reported less family impact than non-Hispanic White families, suggesting resiliency to the pandemic. Research should examine such responses to public health crises in communities of color, with a focus on understanding protective factors. These findings suggest the importance of culturally tailored interventions and policies that support universal psychosocial screenings during times of public health crises.

"Caregiving Youth" and the Patchwork History of Recognition in the United States.

This article examines the U.S. legislative and policy landscape and its historical and contemporary recognition of young people as caregivers and their importance to public health, both as care providers and as a category of special concern for overall wellbeing. Drawing on feminist geographies of health to situate a historical analysis, we aim to answer two key questions: First, what is the history of recognition of caregiving youth in key moments of federal action to address family caregiving needs? Second, how might we use this history to better understand and analyze the patchwork geography of caregiving youth recognition in the U.S. and other countries that similarly lack formal national policy recognition to improve and enhance public health? We use the term patchwork to describe how federal recognition of caregiving youth in broader debates about public health is uneven across both time and space, and contingent upon civil society, non-profit organizations, and researchers working in and with geographically bound communities. Our results illustrate how a focus on the relationships of recognition, both in the past and the present and at local and national scales, reveals a different perspective on caregiving youth in the U.S. with a much more complex history than previously identified. The article describes how relationships established in the absence of federal policy or legislation are sometimes directed towards building more formal recognition, and other times with the goal of changing practices in a specific location.

Caregiver Perspectives on the Health Care System for Tic Disorders: Utilization and Barriers.

This study aimed to understand health care experiences among a sample of caregivers of children with TDs to inform future directions for improving the health care system. We conducted a survey of caregivers of youth with TDs and used descriptive statistics and quantitative analyses to characterize the health care utilization practices of the sample. The majority (70%) of families first consulted their pediatrician/primary care provider, and caregivers reported receiving care in line with current best practice guidelines. However, caregivers in the current sample perceived a lack of knowledgeability on the part of their first providers, which significantly predicted more providers seen and also reported difficulty finding specialty providers (63% of the sample reported difficulty finding a treatment provider who understood tics). Results suggest that improving caregiver satisfaction with early health care experiences for their child's TD may help to relieve the burden on families and the health care system more broadly, along with continued efforts to increase the number of specialty providers available.

Supporting Social Inclusion with DIY-ATs: Perspectives of Kenyan Caregivers of Children with Cognitive Disabilities

Do-It-Yourself assistive technologies (DIY-ATs) that can be designed, fabricated, or customized by non-technical individuals can enable people with disabilities and their community members to create and customize their own technological solutions. DIY-ATs may better fit user needs than mass-produced alternatives. Recently, researchers have started to explore the possibilities and challenges of using DIY-ATs in contexts other than the Global North, where access to digital ATs is limited. Previous research has not yet studied the perspectives of caregivers of children with disabilities towards these technologies. We present findings from an interview study with caregivers of children and youth with cognitive disabilities in Western Kenya who used a DIY-AT system as a research probe. Participants described how negative beliefs about people with disabilities result in social exclusion and discrimination and explained how increased opportunities for social interaction and learning mediated through DIY and other customizable ATs for their children could support their inclusion, safety, and access to future opportunities.

Feasibility of Implementation of a Mobile Digital Personal Health Record to Coordinate Care for Children and Youth With Special Health Care Needs in Primary Care: Protocol for a Mixed Methods Study.

Electronic health record (EHR)-integrated digital personal health records (PHRs) via Fast Healthcare Interoperability Resources (FHIR) are promising digital health tools to support care coordination (CC) for children and youth with special health care needs but remain widely unadopted; as their adoption grows, mixed methods and implementation research could guide real-world implementation and evaluation. This study (1) evaluates the feasibility of an FHIR-enabled digital PHR app for CC for children and youth with special health care needs, (2) characterizes determinants of implementation, and (3) explores associations between adoption and patient- or family-reported outcomes. This nonrandomized, single-arm, prospective feasibility trial will test an FHIR-enabled digital PHR app's use among families of children and youth with special health care needs in primary care settings. Key app features are FHIR-enabled access to structured data from the child's medical record, families' abilities to longitudinally track patient- or family-centered care goals, and sharing progress toward care goals with the child's primary care provider via a clinician dashboard. We shall enroll 40 parents or caregivers of children and youth with special health care needs to use the app for 6 months. Inclusion criteria for children and youth with special health care needs are age 0-16 years; primary care at a participating site; complex needs benefiting from CC; high hospitalization risk in the next 6 months; English speaking; having requisite technology at home (internet access, Apple iOS mobile device); and an active web-based EHR patient portal account to which a parent or caregiver has full proxy access. Digital prescriptions will be used to disseminate study recruitment materials directly to eligible participants via their existing EHR patient portal accounts. We will apply an intervention mixed methods design to link quantitative and qualitative (semistructured interviews and family engagement panels with parents of children and youth with special health care needs) data and characterize implementation determinants. Two CC frameworks (Pediatric Care Coordination Framework; Patient-Centered Medical Home) and 2 evaluation frameworks (Consolidated Framework for Implementation Research; Technology Acceptance Model) provide theoretical foundations for this study. Participant recruitment began in fall 2022, before which we identified >300 potentially eligible patients in EHR data. A family engagement panel in fall 2021 generated formative feedback from family partners. Integrated analysis of pretrial quantitative and qualitative data informed family-centered enhancements to study procedures. Our findings will inform how to integrate an FHIR-enabled digital PHR app for children and youth with special health care needs into clinical care. Mixed methods and implementation research will help strengthen implementation in diverse clinical settings. The study is positioned to advance knowledge of how to use digital health innovations for improving care and outcomes for children and youth with special health care needs and their families. ClinicalTrials.gov NCT05513235; https://clinicaltrials.gov/study/NCT05513235. DERR1-10.2196/46847.

"We are exhausted, worn out, and broken": Understanding the impact of service satisfaction on caregiver well-being.

Few studies exist that have examined the impact of service-related factors and system-level disruptions (i.e., the pandemic) on families of autistic children in Canada using large sample sizes. To address this gap, the goal of this research was to examine the impact of satisfaction with autism services on caregiver stress, controlling for important demographic variables, such as family income, marital status, and child level of support needs. The impact of navigating and accessing services on parent well-being was also explored. A total of 1810 primary caregivers of autistic children or youth living in Ontario, Canada completed a survey with both closed- and open-ended questions in the summer of 2021. A hierarchical multiple regression was conducted to examine the impact of satisfaction with autism services on caregiver stress. Open-ended responses on the survey from a subset of the sample (n = 637) were coded using thematic analysis to understand the impact of navigating and accessing services on parent well-being. Satisfaction with services significantly predicted caregiver stress after controlling for marital support, family income, and child level of support needs. Qualitative analysis revealed impacts of navigating and accessing services in three areas: (1) Physical, (2) Emotional/Psychological, and (3) Financial Well-being. Understanding parent perceptions of satisfaction with services can shed light on strategies for improving services that support parent well-being.

How to meet the needs of youth with severe and enduring mental health problems: A qualitative study to barriers and facilitators in treatment

Youth with severe and enduring mental health problems (SEMHP) do not profit from regular child and adolescent psychiatric (CAP) treatment. Their changing and complex problems cause enormous suffering. To understand why these youth inadequately profit from CAP treatment, this qualitative study aimed to examine the experiences of youth with SEMHP, practitioners, and caregivers to identity barriers and facilitators in treatment. We conducted 31 semi-structured interviews with youth (n = 10), practitioners (n = 10), and caregivers of youth with SEMHP (n = 11). A thematic analysis was performed both deductively and inductively, and the perspectives of participants were compared. Results showed barriers and facilitators in five categories: before treatment, engagement and accountability, trust-based treatment, organization of care, and hopelessness. To restore epistemic trust, a shift from a risk-avoidance approach towards trust-based relationships in treatment is required. Additionally, organizing continuous and tailored care can prevent youth from slipping through the cracks of waiting lists and receiving inadequate treatment.

LGBTQ Caregiver Acceptance Scale (LCAS): Development and validation with a Latinx sample.

Caregiver acceptance and rejection is crucial to the well-being of lesbian, gay, bisexual, transgender, and queer (LGBTQ) people. Research shows that caregivers are affected by having an LGBTQ child/family member, yet studies have neglected to capture the experiences of Latinx caregivers. We present the development and initial validation of the LGBTQ Caregiver Acceptance Scale (LCAS) with a Latinx sample. We developed items based on a review of the literature, expert feedback (N = 9), and community member feedback (N = 9; Study 1). We then assessed the factor structure through exploratory factor analysis (EFA) in a sample of 215 Latinx caregivers of LGBTQ people (Study 2). The final LCAS consists of 40 items and six dimensions of Latinx caregivers' acceptance and rejection of their LGBTQ child/family member: Outness, Caregiver Acceptance, Concealment, Respeto, Attitudes Toward Queer Parenting, and Supportive Actions. Convergent and divergent validity was performed to compare the LCAS to other constructs of caregiver acceptance and rejection, family conflict and cohesion, and attitudes toward the LGBTQ community. As hypothesized, all subscale scores and total score were found to be significantly correlated with the constructs used for comparison. This validated measure of LGBTQ-specific acceptance and rejection among caregivers provides a rich opportunity to understand family processes and help inform evidence-based interventions. We provide implications for clinicians working with Latinx caregivers of LGBTQ youth. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Associations between childhood irritability and neural reactivity to maternal feedback in adolescence

Early irritability, a transdiagnostic vulnerability for psychopathology, is associated with alterations in neural reactivity to emotional stimuli and reward; however, associations between childhood irritability and neural markers of risk may be mitigated by the quality of caregiving youth receive. We examined longitudinal relationships between irritability in childhood and young adolescents’ neural activity of regions typically associated with emotion regulation and reward processing during processing of maternal feedback and tested whether these associations were moderated by youth’s perceptions of the parent-child relationship quality. Eighty-one adolescents (Mage = 11.1 years) listened to maternal critical and praising feedback while undergoing functional magnetic resonance imaging. Age 3 irritability, assessed observationally, was negatively associated with age 11 neural reactivity to maternal criticism in a cluster in the right dorsolateral prefrontal cortex (dlPFC), particularly for youths who reported more positive maternal parenting. Given the role of the dlPFC activation in the effortful processing of emotional stimuli, decreased activation may reflect disengagement from negatively valenced interpersonal feedback in the context of a positive caregiving environment, thereby mitigating psychopathology risk associated with irritability.

Caregiver and Juvenile Justice Personnel Perspectives on challenges and importance of caregiver engagement and the potential utility of a peer navigator program in the Juvenile Justice System

BackgroundFor youth involved in the juvenile justice (JJ) system, caregiver involvement and engagement in the system is crucial for youth development and outcomes of JJ cases; however, there are challenges to establishing positive/productive partnerships between caregivers and JJ representatives. The current project examines perspectives of caregivers and JJ personnel regarding facilitators and barriers to establishing JJ-caregiver partnerships, as well as their perceptions of the use of a caregiver navigator program to support caregivers of system-involved youth. Results are used to inform development of a caregiver navigator program to support caregivers and help them navigate the JJ system.ResultsSemi-structured interviews were conducted with caregivers of youth involved in JJ (n = 15, 53% White, 93% female), JJ personnel (n = 7, 100% White, 50% female), and JJ family advisory board members (n = 5, 100% Black, 100% female). Caregivers reported varying experiences across intake/arrest, court, and probation processes. Positive experiences were characterized by effective communication and feeling supported by JJ. Negative experiences related to feeling blamed and punished for their child’s system involvement and feeling unsupported. JJ interviews corroborated caregiver sentiments and also illustrated facilitators and barriers to JJ-caregiver partnerships. Both JJ personnel and caregivers endorsed potential benefits of a peer-based caregiver navigator program to provide social, informational, and emotional support.ConclusionContinued work is needed to improve JJ-caregiver partnerships and use of a peer-based navigator program has the potential to address barriers to caregiver engagement in the JJ system.

Mental and Emotional Health of Caregivers of Youth with Sickle Cell Disease: A Systematic Review

Abstract: People of African descent and those identifying as Black and/or Latino experience a disproportionate burden of sickle cell disease (SCD), a chronic, serious blood condition. Caregivers of children with chronic medical conditions report worse mental health than others. Disease-associated stressors can affect caregivers of children with SCD. We conducted a systematic review to summarize the prevalence of mental health symptoms in caregivers of children with SCD and to see if symptoms were associated with the child's SCD. This review is reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines. We searched PubMed, PsycINFO, and Embase, identifying 1,322 records of which 40 met criteria for inclusion in this review. Findings suggest caregivers experience mental health problems, and poorer mental health was associated with worse child SCD-related outcomes and treatment adherence. Efforts should be made to routinely screen SCD caregiver mental health and to refer accordingly.

The mediating role of caregiver hope in relations among caregivers’ coping and emotional socialization beliefs in pediatric oncology

Purpose: The purpose of this study is to identify links between caregiver hope, caregiver coping behaviors, and caregivers’ coaching versus dismissing emotion socialization (ES) beliefs in a pediatric cancer sample. Design: Self-report measures. Sample: Caregivers (N = 183, 80.20% mothers; 58.5% white; 32.2% Hispanic) of youth undergoing cancer treatment (51.10% hematological malignancy, 15.30% brain or spinal [CNS] tumor, and 25.14% non-CNS solid tumor) for at least six weeks. Method: We used a series of mediation models to examine links between caregivers’ coping behaviors, hope, and ES beliefs. Findings: Caregivers’ hope significantly mediated a positive relation between caregivers’ coping and their emotion coaching beliefs, as well as an inverse relation between caregivers’ maladaptive coping and their emotion dismissing beliefs. Conclusion: Enhancing caregivers’ hope or adaptive coping may support caregivers’ beliefs during the pediatric cancer experience. Implications for Psychosocial Providers: Our findings support future research to evaluate whether enhancing caregivers’ hope or adaptive coping may help support evidence-based interventions that target ES beliefs and behaviors.

Caregiver Psychological Burden in Pediatric Chronic Pain: A Systematic Review and Meta-Analysis of Associations with Caregiver Sociodemographic and Biopsychosocial Variables.

To investigate, via systematic review and meta-analysis, caregiver sociodemographic and biopsychosocial factors associated with anxiety, depression, posttraumatic stress symptoms, and stress of caregivers in the pediatric chronic pain context. EMBASE, Medline, and PsycINFO databases were searched from their inception to the search date (April 4, 2022). Studies were included if they examined caregivers of youth with chronic pain, were published in a peer-reviewed journal and assessed at least one quantitative association between relevant variables. Qualitative and intervention studies were excluded. A total of 3,052 articles were screened. Risk of bias was assessed using the JBI Checklist for analytical cross-sectional studies. Meta-analyses were conducted using robust variance estimation for associations reported in at least three studies, as well as a narrative synthesis of the evidence. Fourteen studies assessing 1,908 caregivers were included in this review. Meta-analytic results showed a positive pooled correlation coefficient between caregiver catastrophizing about their child's pain and caregiver anxiety (r = 0.51; 95% CI: 0.35-0.65; p<.01) and depression (r = 0.45; 95% CI: 0.29-0.58; p < .01). Self-blame and helplessness were related to increased caregiver anxiety (r = 0.55; 95% CI: 0.40-0.67; p<.01), but not depression. No significant relationship was found for pain-promoting behavior and anxiety or depression. The qualitative synthesis of all other eligible studies showed associations between relevant psychological burden variables and various caregiver factors, which were mainly psychosocial. Results should be interpreted with caution due to the small number of studies. Further research is needed to get a better understanding of these relationships and to examine the causal direction of effects.

Designing a Collaborative Patient-Centered Digital Health Platform for Pediatric Diabetes Care in British Columbia: Formative Needs Assessment by Caregivers of Children and Youths Living With Type 1 Diabetes and Health Care Providers.

Digital health apps are becoming increasingly available for people living with diabetes, yet data silos continue to exist. This requires health care providers (HCPs) and patients to use multiple digital platforms to access health data. In this study, we gathered the perspectives of caregivers of children and youths living with type 1 diabetes (T1D) and pediatric diabetes HCPs in the user-centered design of TrustSphere, a secure, single-point-of-access, integrative digital health platform. We distributed web-based surveys to caregivers of children and youths living with T1D and pediatric diabetes HCPs in British Columbia, Canada. Surveys were designed using ordinal scales and had free-text questions. Survey items assessed key challenges, perceptions about digital trust and security, and potential desirable features for a digital diabetes platform. Similar challenges were identified between caregivers of children and youths living with T1D (n=99) and HCPs (n=49), including access to mental health support, integration of diabetes technology and device data, and the ability to collaborate on care plans with their diabetes team. Caregivers and HCPs identified potential features that directly addressed their challenges, such as more accessible diabetes data and diabetes care plans. Caregivers had more trust in sharing their child's data digitally than HCPs. Most caregivers and HCPs stated that an integrative platform for T1D would support collaborative patient care. Caregiver and HCP perspectives gathered in this study will inform the early prototype of an integrative digital health platform. This prototype will be presented and iterated upon through a series of usability testing sessions with caregivers and HCPs to ensure the platform meets end users' needs.