Younger Caregivers Research Articles

Evidence-Based Practices Via Remote Service Delivery for Early Intervention in Rural Communities

The COVID-19 pandemic increased the use of remote service delivery in early childhood intervention (EI), and this increased use is promising for young children with disabilities living in rural communities. However, the increase in remote service delivery requires a greater understanding of using evidence-based practices (EBP) delivered by EI providers via this mode. Remote service delivery adds a new context to EI services requiring study to identify (a) what works for whom and under what conditions, (b) how an evidence-based practice delivered remotely results in positive outcomes for young children and caregivers, and (c) the independent variables that influence those outcomes. This position paper explains the importance of remote service delivery for improving access to EBP for young children with disabilities and their families in rural communities using a conceptual framework. The conceptual framework includes three essential factors described in depth in this article. First, the conceptual framework can support researchers in designing rigorous studies to deliver evidence-based practices remotely. Second, the conceptual framework can support EI programs and providers in identifying EBP for service delivery for young children and families in rural communities.

Virtual Dementia-Friendly Communities (Verily Connect) Stepped-Wedge Cluster-Randomised Controlled Trial: Improving Dementia Caregiver Wellbeing in Rural Australia.

Caring for people living with dementia often leads to social isolation and decreased support for caregivers. This study investigated the effect of a Virtual Dementia-Friendly Rural Communities (Verily Connect) model on social support and demand for caregivers of people living with dementia. The co-designed intervention entailed an integrated website and mobile application, peer-support videoconference, and technology learning hubs. This mixed-methods, stepped-wedge, cluster-randomised controlled trial was conducted with 113 participants from 12 rural communities in Australia. Caregiver data were collected using MOS-SSS and ZBI between 2018 and 2020. The relationship between post-intervention social support with age, years of caring, years since diagnosis, and duration of intervention were explored through correlation analysis and thin plate regression. Google Analytics were analysed for levels of engagement, and cost analysis was performed for implementation. Results showed that caregivers' perception of social support (MOS-SSS) increased over 32 weeks (p = 0.003) and there was a marginal trend of less care demand (ZBI) among caregivers. Better social support was observed with increasing caregiver age until 55 years. Younger caregivers (aged <55 years) experienced the greatest post-intervention improvement. The greatest engagement occurred early in the trial, declining sharply thereafter. The Verily Connect model improved caregivers' social support and appeared to ease caregiver demand.

Factors Influencing Posttraumatic Growth Among Primary Caregivers of Patients with Oncologic Emergencies in Taiwan Intensive Care Units: A Cross-Sectional Study of Patient–Caregiver Dyads

(1) To assess the levels of fear of cancer recurrence (FCR), social support, coping styles, and posttraumatic growth; (2) to identify factors associated with posttraumatic growth; and (3) to compare patient and primary caregiver characteristics by level of posttraumatic growth (no-to-little posttraumatic growth vs. moderate-to-high posttraumatic growth) in the primary caregivers of patients with an oncologic emergency. A cross-sectional study design was adopted. Data were collected by convenience sampling of cancer patient-caregiver dyads who experienced an oncologic emergency within the last 6 months at a medical center in northern Taiwan. The patients, who had completed cancer treatment, were in an intensive care unit. They were assessed for disease severity, physical performance, and demographic and clinical characteristics. Primary caregivers were assessed for FCR, social support, coping styles, and posttraumatic growth using a set of questionnaires. We found that 80.8% of primary caregivers reported moderate-to-high posttraumatic growth and 19.2% reported no-to-little posttraumatic growth. Greater posttraumatic growth in primary caregivers was associated with experiencing more patient oncologic emergencies, younger caregiver age, a higher caregiver FCR score, and caregivers' use of active coping behaviors. Caregivers were less likely to report posttraumatic growth if they experienced fewer patient oncologic emergencies, were older, reported lower FCR, and used active coping strategies less frequently. Developing scenario-based simulations to facilitate caregiving for an oncologic emergency and providing psychological counseling to encourage active coping can help primary caregivers recover emotionally from an oncologic emergency and facilitate growth.

Promoting early childhood development through built environment transformations: lessons from the safe route project in Lima, Peru

ABSTRACT Early childhood development is crucial for children’s growth and long-term outcomes. In Peru, the government has made investments in education and health, aiming to support child development programs. However, more work is needed in other areas to ensure all children can thrive. This paper explores the potential of interventions in the built environment as a relatively unexplored area that could benefit child’s development. We present the implementation of the ‘Safe Route to the “Mercedarias” daycare’ project as a successful experience for promoting child-friendly cities. The project involved collaboration among mid-level officers and frontline workers within a large municipality’s organizational structure. The strategies we used allowed us to build a working group willing to collaborate on further projects. The process was successful without requiring additional expenses beyond regular costs. Officers that had never been involved before felt engaged with the initiative while testimonies from caregivers indicated positive outputs. The case study could serve as an example to other cities of a successful model for promoting early childhood development in cities by engaging stakeholders at all levels in the identification of challenges faced by young children and caregivers while underscoring the importance of investing in urban environment interventions for improving children’s growth.

The Relationship Between Primary Caregivers’ Psychosocial Factors and Self Esteem in Children and Adolescents with ADHD: An Exploratory Crosssectional Study

Objective: This study examined the correlation between primary caregivers’ psychosocial factors and self-esteem in children and adolescents with attention-deficit/hyperactivity disorder (ADHD). Materials and Methods: A cross-sectional study involving primary caregivers and their children with ADHD, aged 8-15, was conducted from September 2022 to February 2023. The children’s self-esteem was assessed using the Five-Scale Test of Self-Esteem for Children. Primary caregivers’ psychosocial factors were assessed using the Attitude of Parenting Questionnaire, Parenting Style and Dimension Questionnaire, Patient Health Questionnaire-9, and Generalized Anxiety Disorder 7-item. Descriptive statistics and multivariable linear regression were used to determine the associations among variables. Results: The study included 66 pairs of children and adolescents with ADHD and their primary caregivers. The study found 53% of caregivers screened positive for depression, while 16.7% screened positive for anxiety. Almost all caregivers (90.9%) adopted an authoritative parenting. The mean self-esteem score in participants with ADHD was 39.23±8.99. Younger caregivers, those with an education level below a bachelor’s degree, higher monthly income, positive screening for depression, and lower attitudes toward parenting scores were significantly associated with low self-esteem scores in their children. Conclusion: Age, education level of caregivers, and monthly family income were significantly correlated with the self-esteem of children and adolescents with ADHD. The attitudes of caregivers towards parenting and depression in caregivers also impacted self-esteem of children with ADHD under their care. Thus, strategies aimed at promoting positive caregiving attitudes, regular screening of caregivers for depression, and providing appropriate treatment are recommended to enhance self-esteem in children and adolescents with ADHD.

Camel-Related Facial Injuries: A Seven-Year Retrospective Study.

Facial injuries caused by camels can be associated with adverse long-term effects on patients' quality of life. We aimed to investigate camel-related facial injuries in Al-Ain City, UAE, focusing on their incidence, types, mechanisms, anatomical distribution, and outcomes, to enhance preventive measures. We retrospectively collected data from all patients who were admitted to our hospital with camel-related facial injuries from January 2014 through January 2021. Thirty-six patients were included; all were males, with a mean (range) age of 31 (14-66) years, 29 (80.5%) were camel caregivers. The most common mechanisms of injury were falling while riding a camel and camel kicks. The head was the most commonly injured region in 52.7%. Twenty-three (63.8%) patients had facial bone fractures. The middle third of the face accounted for 71.4% of the bony fractures. The most performed surgical procedures in our patients were soft tissue laceration repair and open reduction with internal fixation of fractures (ORIF). Camel-related facial injuries affect young adult male camel caregivers working on camel farms. Orbital and maxillary bone fractures are the most predominant fractures requiring operative management. Legislation for compulsory helmet usage may reduce the incidence of these injuries and their serious consequences.

Informal Caregiving in Adolescents from 10 to 16 Years Old: A Longitudinal Study Using Data from the Tokyo Teen Cohort.

There is growing evidence of the impact of informal caregiving on adolescent mental health, and its role is often hidden unintentionally or intentionally, which may hamper early identification and support for young informal caregivers. However, the quantitative evidence regarding household factors relating to informal caregiving has mostly been based on cross-sectional findings. This study examines the longitudinal associations between household characteristics and the duration of informal caregiving in adolescents from 10 to 16 years of age. Child-household respondent pairs (n = 2331) from the Tokyo Teen Cohort in Japan were followed every 2 years from 10 to 16 years of age. Informal caregiving was assessed repeatedly based on the household respondent's survey responses. Persistent caregiving was defined as daily caregiving at two or more waves. There were 2.2% of children who gave daily care at two or more waves. Cross-sectional associations with daily informal caregiving at each wave were found with girls, low household income, and cohabiting with grandparents. A significant association with persistent caregiving was found only in cohabiting with grandparents at 10 years of age after adjusting for sex, number of siblings, single parent, and household income. Our longitudinal examination highlighted cohabiting with grandparents as a preceding factor for persistent caregiving. Identification and support for young informal caregivers should be integrated into social care service systems for older adults. The mechanism of persistent caregiving requires clarification.

Voices from Service Providers Who Supported Young Caregivers throughout the COVID-19 Pandemic in the Canadian Context.

This empirical research is part of a larger project beginning in 2020 and ongoing until 2023, exploring the impact of the COVID-19 pandemic on young caregivers aged 5-25 years and their families in Canada. This qualitative research utilizes the social determinants of health as a conceptual framework and a collective case study design to emphasize the voices and experiences of service providers (professionals offering services to young caregiver clients) during the COVID-19 pandemic, and exploring their perspectives on the impact of the pandemic on young caregivers and their families. The central research question guiding this study was "How do service providers (professionals) working with young caregiver clients in Canada describe the impacts of the pandemic on themselves, their professional praxis, and on their young caregiver clients?" The aim of this study was to develop a deeper understanding of the impact of the pandemic on young caregivers in Canada, from the perspectives of service providers, as well as to understand the experiences of service providers in their own voices. Data were collected from service providers working within three (3) different organizations offering programs and services to young caregiver clients in Ontario, Canada. In total, six (6) individual interviews were conducted with service providers who were directors/program managers, and four (4) group interviews were conducted with thirteen (13) service providers who were frontline staff members who worked directly with young caregivers and their families. In total, nineteen (n = 19) unique service providers participated in this study. Our findings point to two primary overarching themes, namely (1) service providers' responses to the pandemic and (2) observations by service providers about the impacts of the pandemic on young caregivers, and a secondary theme, (3) positive outcomes from the COVID-19 pandemic on young caregivers, that emerged through the analysis. The pandemic led to increased demands for services by young caregiver clients. Service providers were required to adapt their service delivery methods in order to comply with public health guidelines. They shared how their work impacted their mental health as they struggled to maintain personal and professional boundaries while working from home during the pandemic. Importantly, service providers identified similar, simultaneous, and co-occurring impacts of the pandemic between their young caregiver clients, including isolation, difficulties in navigating online spaces, and challenges in navigating boundaries while working from home with family members.

The Impact of Public Health Restrictions on Young Caregivers and How They Navigated a Pandemic: Baseline Interviews from a Longitudinal Study Conducted in Ontario, Canada.

This qualitative research study is a part of a larger research project exploring the experiences of young caregivers aged 5-26 years and their families navigating the COVID-19 pandemic between 2020 to 2023. Data were collected from 14 young caregivers who participated in baseline interviews. The central research question guiding this study: What was, is, and will be the impact of changing public health restrictions on young caregivers and their families during the pandemic and pandemic recovery? Seven themes emerged through analysis: (1) Navigating Care During the Height of Public Health Restrictions, (2) Neighbourhood and Built Environment During the Pandemic, (3) Perceptions Towards COVID-19 and Public Health Restrictions/Efforts, (4) The Impact of Public Health Restrictions on Relationships, (5) Mental Health Challenges of Being a Young Caregiver During a Pandemic, (6) Navigating Formal Services and Supports, and (7) Recommendations from Young Caregivers. The findings from this empirical research suggest that young caregivers found it easier to navigate their caregiving responsibilities when public health restrictions and work-from-home mandates were initially implemented; however, this later changed due to challenges in finding respite from caregiving, maintaining social connections with friends, creating personal space at home, and finding adequate replacements for programs once offered in person.

A Qualitative Analysis of the Experiences of Young Patients and Caregivers Confronting Pediatric and Adolescent Oncology Diagnosis.

Epidemiological studies show that new cases of young oncology patients are increasing by 400,000 every year. Psychological literature has shown that receiving an oncological diagnosis can cause significant psychological stress and discomfort. However, the experiences of young patients and their caregivers as they confront this challenge are not yet fully understood. This paper adopts a qualitative methodological approach to explore how young patients with an oncological diagnosis and their parents make sense of the experiential challenges they face. Thus, the research realized 18 semi-structured interviews, 11 of which were with pediatric and adolescent oncology patients, and 7 of which were with 6 mothers and 1 father. The qualitative thematic analysis revealed that the oncological diagnosis triggers different emotions taking the scene in the attempt to cope with the threats of meaning that the diagnosis poses. However, such intense experience promotes transformative feelings in parents and young patients, leading to important personal growth. Lastly, this article discusses the need to improve palliative psychological care competences in pediatric oncology. By providing comprehensive psychological care to young oncology patients and their families, healthcare providers can mitigate the psychological stress and pain associated with the diagnosis and treatment of cancer.

Exploring navigation of gender in a sample of clinically referred young people attending the gender identity development service

BackgroundGender-diverse young people experience a cisnormative world and are subject to unique minority stressors, which have been found to contribute to adverse mental health. This research aims to understand the social and personal context unique to gender-diverse people that young people navigate prior to attending specialised services.MethodsThe baseline measure of a newly developed questionnaire, the GIDS Gender Questionnaire (GIDS-GQ), was sent to all young people (or caregivers for those aged under 12) attending the Gender Identity Development Service (GIDS). Eighty-four young people and caregivers completed the questionnaire, with eighty-one included in the final sample (M = 15.77 years, SD = 1.83, range = 9–17; assigned female at birth = 72, assigned male at birth = 9). Questionnaires were emailed to participants via an online survey between one and three appointments with the Service. Data were collected between April 2021 and February 2022.ResultsAll young people had initiated a social transition, with 75.3% categorised as fully socially transitioned. More young people reported experiencing transphobic bullying (64.2%) and a lack of acceptance of their gender identity (85.1%) in the past (lifetime) than in the 6 months prior to attending the service (transphobic bullying: 12.3%; non-acceptance: 49.4%). 94.5% of the sample reported disliked body parts, most commonly breasts (80.8%), genitals (37%), and hips (31.5%). Participants most commonly reported a decrease in their mood (61.25%) and most areas of social connectedness.ConclusionsThe majority of this sample had socially transitioned, were supported in their identification, and had experienced less transphobic bullying and non-acceptance prior to commencing services. However, young people continued to dislike their bodies, and experience low mood and social connectedness. Future research is needed to understand how clinical support can help reduce the impact of these external/distal minority stressors by promoting social connectedness, incorporating such learnings into clinical practice and subsequent policy in clinical work with gender-diverse young people.

Inequalities in associations between young adult caregiving and social relationships: Evidence from the UK Household Longitudinal Study.

Young adult caregivers (aged 16-29 years) are an important but underrecognizedgroup of informal caregivers. There is some evidence suggesting that young adult caregivers have fewer social relationships. However, this research has been largely cross-sectional in design or restricted to caregivers, providing no comparison with noncaregivers. Further, there is little evidence on whether and to what extent there are inequalities in associations between young adult caregiving and social relationships by gender, age, caregiving intensity, or household income. Using five waves of data on 3-4000 young adults aged 16-29 from the UK Household Longitudinal Study, we investigated associations between becoming a young adult caregiver and subsequent social relationships (number of close friends and participation in organized social activities) in the short-term (1-2 years after caregiving initiation) and longer-term (4-5 years later). We also assessed differences by gender, age, household income, and caregiving intensity. Overall, those who became young adult caregivers, and particularly those providing 5+ h/week, reported fewer friends in the short- but not longer-term. No associations were observed between young adult caregiving and participation in organized social activities. Also, there was no evidence of differences by gender, age, income, or caregiving hours. Becoming a young adult caregiver is associated with a reduction in number of close friends, particularly in the short-term. Given the importance of practical and emotional support provided by friends, the early identification of young adult caregivers and greater population awareness of caring in young adulthood may help to mitigate the effects on social relationships.

Interventions to improve outcomes for caregivers of patients with advanced cancer: A systematic review and meta-analysis.

12026 Background: More than one in ten adults in the US are family caregivers, with cancer among the most common diagnoses of care recipients. Family caregivers of patients with advanced cancer often have poor quality of life (QOL) and mental health. We examined the effectiveness of interventions offering support for caregivers of patients with advanced cancer on caregiver QOL and mental health outcomes. Methods: We searched Ovid MEDLINE, EMBASE, Cochrane CENTRAL, and CINAHL databases from inception through 6/2021. Eligible studies reported on randomized controlled trials for adult caregivers of adult patients with advanced cancer. Meta-analysis was conducted for primary outcomes of QOL, physical well-being, mental well-being, anxiety, and depression, from baseline to follow-up of 1-3 months; secondary endpoints were these outcomes at 4-6 months and additional caregiver burden, self-efficacy, family functioning and bereavement outcomes. Random effects models were used to generate summary standardized mean differences (SMD). Meta-regression was conducted for primary outcomes that were significant for the intervention, assessing for mediation effect modification by caregiver sex and age of patient and caregiver. Type I error was 0.05. PROSPERO Registration: CRD42019136321. Results: Of 12,193 references identified, 56 articles reporting on 49 trials involving 8,554 caregivers were eligible for analysis; 16 (33%) targeted caregivers (mostly psychoeducational or problem-solving interventions), 19 (39%) patient-caregiver dyads (mostly counseling/therapy), and 14 (29%) patients and their families (mostly palliative care teams). At 1-3 month follow-up, interventions had a significant effect on overall QOL (SMD 0.24 (0.10 to 0.39), I2 = 52.0%), mental well-being (SMD 0.14 (0.02 to 0.25), I2 = 0.0%), anxiety (SMD 0.27 (0.06 to 0.49), I2 = 74.0%), and depression (SMD 0.34 (0.16 to 0.52), I2 = 64.4%), compared to standard care. At 1-3-month follow-up, a larger age difference (older patient and younger caregiver) was associated with a greater positive effect on QOL (p = 0.04) and depression (p = 0.02). In narrative synthesis, interventions demonstrated improvements in caregiver self-efficacy and grief. Conclusions: Interventions targeting caregivers, dyads, or patients and families led to improvements in caregiver QOL and mental health outcomes. These data support the routine provision of available interventions to support caregivers of patients with advanced cancer.

Stress and Well-Being amongst Young Adults with Chronically Ill Parents

Abstract: This study examines the levels of stress and wellbeing among young adults with chronically ill parents, aiming to understand the impact of caregiving responsibilities on their mental health and overall wellbeing. The hypothesis posits that higher levels of perceived stress among young adults caring for chronically ill parents will be associated with lower levels of general wellbeing. The research objectives include assessing stress and wellbeing, comparing these levels between caregivers and non-caregivers, examining the relationship between perceived stress and general wellbeing, identifying contributing factors to stress, and providing insights into the mental health needs of young adults with chronically ill parents. The sample consists of 100 young adults aged 18 to 30 years, recruited using non-probability purposive sampling techniques from various parts of India. Participants were required to have at least one chronically ill parent. The study utilizes the Perceived Stress Scale (PSS) and General Wellbeing Inventory (GWI) to assess stress levels and overall wellbeing among participants. Correlational was employed to examine the relationship between perceived stress and general wellbeing. The results indicate that young adults with chronically ill parents experience higher levels of perceived stress and lower levels of general wellbeing compared to their peers without chronically ill parents. Additionally, a significant negative correlation was found between perceived stress and general wellbeing, confirming that higher levels of stress are associated with lower levels of wellbeing. The study also examined factors contributing to stress among young adult caregivers, such as the severity of the parent's illness, the duration of caregiving, and the availability of social support. Findings suggest that physical illnesses in parents result in higher stress levels compared to mental illnesses. Furthermore, problem-focused coping strategies, such as seeking information and social support, were found to be more effective in reducing stress and promoting wellbeing compared to emotion-focused coping strategies. The findings of this study provides valuable insights into the mental health needs of young adults with chronically ill parents and informs the development of targeted interventions to enhance wellbeing and reduce stress in this population.

Parenting in Adversity: Effects of Older Caregivers, Biological Carers and Troubled Carers on Child Outcomes in High HIV-Affected Communities

Caregiving by older adults is a common phenomenon, enhanced in the era of HIV infection. This longitudinal study was set up to examine the effect of caregiver age, relationship and mental wellbeing on child (4–13 years) outcomes (psychosocial and cognitive) in a sample of 808 caregiver- child dyads in South Africa and Malawi. Respondents were drawn from consecutive attenders at Community Based Organisations (CBOs) and interviewed with standardised inventories at baseline and followed up 12–15 months later. Analysis focused on three separate aspects of the caregiver; age, relationship to the child, and mental wellbeing, results are stratified with regard to these factors. Results showed that compared to younger caregivers, over 50 years were carrying a heavy load of childcare, but caregiver age for the most part was not associated with child outcomes. Being biologically related to the child (such as biological grandparenting) was also not a significant factor in child outcomes measured. However, irrespective of age and relationship, caregiver mental health was associated with differences in child outcome – those children of caregivers with a greater mental health burden were found to report experiencing more physical and psychologically violent discipline. Over time, the use of violent discipline was found to reduce. These data suggest that older caregivers and grandparents are providing comparable care to younger caregivers, for young children in the face of the HIV epidemic and that interventions should focus on mental health support for all caregivers, irrespective of age or relationship to the child.

Ethnographic understandings of sexual and reproductive health and HIV care for adolescents in Blantyre, Malawi

Sexual and reproductive health (SRH) care and support are provided to adolescents living with HIV, with the aim to build safer sex negotiation skills, sexual readiness and reproductive preparedness while reducing unintended pregnancies and sexually transmitted infections. We consider how different settings might either constrain or facilitate access to resources and support. Ethnographic research was conducted in Malawi in teen club clinic sessions at an enhanced antiretroviral clinic from November 2018 to June 2019. Twenty-one individual and five group interviews were conducted with young people, caregivers, and healthcare workers, and were digitally recorded, transcribed, and translated into English for thematic analysis. Drawing on socio-ecological and resilience theories, we considered the different ways in which homes, schools, teen club clinics, and community settings all functioned as interactional, relational, and transformational spaces to allow young people to talk about and receive information on sexuality and health. Young people perceived that comprehensive SRH support enhanced their knowledge, sexual readiness, and reproductive preparedness. However, their desire to reproduce at an early age complicated their adoption of safer sex negotiation skills and SRH care. Engaging and talking about SRH and related issues varied according to physical and social space, suggesting the value of multiple locations for support and resources for young people with HIV.

Prevalence of children under five with disabilities in Sierra Leone in 2017: Insights from a population-based multiple indicator cluster survey

BackgroundChildren with disabilities have been low on the agenda of child health, including in Sierra Leone, and there are still many gaps in our knowledge and understanding of the issue. ObjectiveTo estimate the prevalence of children with disabilities in Sierra Leone using functional difficulty as a proxy and to understand the factors associated with disabilities among children two to four years living in Sierra Leone. MethodsWe used cross-sectional data from the Sierra Leone 2017 Multiple Indicator Cluster Survey. Disability was defined using a functional difficulty definition with additional thresholds used to define children with severe functional difficulty and multiple disabilities. Logistic regression models estimated odds ratios (ORs) of childhood disability and how they were associated with socioeconomic factors and living conditions. ResultsPrevalence of children with disabilities was 6.6% (95% confidence interval (CI) 5.8–7.6%) and there was a high risk of comorbidity between different functional difficulties. Children with disabilities were less likely to be girls (adjusted odds ratio (AOR) 0.8 (CI 0.7–1.0) and older (AOR 0.3 (CI 0.2–0.4)), but more prone to be stunted (AOR 1.4 (CI 1.1–1.7)) and have younger caregivers (AOR 1.3 (CI 0.7–2.3)). ConclusionThe prevalence of disabilities in young Sierra Leonean children was comparable to other countries in West and Central Africa when using the same measure of disability. Preventive as well as early detection and intervention efforts are recommended to be integrated with other programs, e.g vaccinations, nutrition, and poverty reducing programs.

Adapting an intervention to support young caregivers of cancer survivors: A study protocol.

Of the family members providing care, in the United States over 5.4 million are young people (<18 years of age) and they are the caregivers receiving the least support overall. Given the need to support cancer survivors through a family-centered practice approach, this lack of support and intervention for young caregivers represents a substantial gap in cancer care. In this study, we will adapt a young caregivers intervention, YCare, with young caregivers in families affected by cancer in order to advance support for families in cancer settings. YCare is an intervention that improves the support young caregivers provide through a peer-engaged, multidisciplinary model but has previously not been studied in the cancer care setting. Guided by the updated Consolidated Framework for Implementation Research (CFIR) we will engage stakeholders (i.e., young caregivers, cancer survivors, health care providers) using qualitative (i.e., one-on-one semi-structured interviews) and arts-based methods. Stakeholders will be recruited via cancer registries and community partners. Data will be analyzed descriptively using deductive (e.g., CFIR domains) and inductive (e.g., cancer practice settings) approaches. The results will indicate the critical components for adapting the YCare intervention to the cancer practice context including new intervention elements and key characteristics. Adapting YCare to a cancer context will address a critical cancer disparity issue.

Characteristics and Potential Challenges of Digital-Based Interventions for Children and Young People: Scoping Review.

Digital health technologies are becoming increasingly available to children and young people and their families. However, there are no scoping reviews that provide both an overview of the characteristics of digital interventions for children and young people and potential challenges to be considered when developing and implementing them. This study aimed to systematically review scientific publications to identify the current characteristics and potential complications of digital interventions for children and young people. This scoping review was conducted using the framework of Arksey and O'Malley and adheres to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines for scoping reviews. A search of 5 databases (PubMed, Scopus, Embase, MEDLINE, and CINAHL) and Google Scholar was performed for eligible clinical trials published between January 1, 2018, and August 19, 2022. The initial search of the 5 databases yielded 3775 citations; duplicates and those not meeting the inclusion criteria were eliminated. In total, 34 articles were included in the final review and relevant information, such as the descriptive characteristics and potential challenges, were classified. Mental health (26/34, 76%) was the most common target for the digital intervention for children and young people, exceeding physical health (8/34, 24%) by more than 3 times. In addition, a substantial number of digital interventions were dedicated solely to children and young people. Digital interventions for children and young people were more likely to be delivered via computers (17/34, 50%) rather than smartphones (13/34, 38%). More than one-third of the studies (13/34, 38%) applied cognitive behavioral theory as the theory of digital interventions. The duration of the digital intervention for children and young people was more likely to vary depending on the target user rather than the target disease. Intervention components were classified into 5 categories: guidance, task and activity, reminder and monitoring, supportive feedback, and reward system. Potential challenges were subcategorized into ethical, interpersonal, and societal challenges. For ethical challenges, the consent of children and young people or caregivers, potential risk of adverse events, and data privacy issues were considered. For interpersonal challenges, the engagement of children and young people was affected by the preference or barrier of caregivers to participate in studies. For societal challenges, restricted ethnicity in recruitment, limited availability of digital technology, differences in internet use patterns between girls and boys, unified clinical settings, and language barriers were described. We identified potential challenges and provided suggestions about ethical, interpersonal, and societal aspects to consider when developing and deploying digital-based interventions for children and young people. Our findings provide a thorough overview of the published literature and may serve as a comprehensive, informative foundation for the development and implementation of digital-based interventions for children and young people.

Encountering young caregivers: Attitudes and practices of healthcare professionals caring for cancer patients.

Cancer and its treatments severely limit patients' daily lives. Relatives of patients may provide caregiving assistance to help patients cope with these limitations. Many children and adolescents-referred to as young caregivers (YCs)-provide support for patients. However, healthcare professionals do not always recognize YCs, and when they do, healthcare professionals are unsure how to support them. This study aimed to explore healthcare professionals' attitudes toward and practices when encountering YCs and to compare these aspects according to their experiences with YCs. In total, 395 oncology healthcare professionals (mean age 43.3years; 84.8% females) participated in the study and completed an online survey. Only 1 in 2 professionals reported ever meeting a YC. The majority identified YCs by YCs' frequent presence in the department. No significant difference in attitudes was observed between professionals who had met a YC and those who had never met one. The support provided by professionals to YCs generally consisted of vigilance and exchanges. However, many professionals expressed a need to know where they can refer YCs for assistance. These findings underline the importance of improving the practices of healthcare professionals to help them better identify and support the YCs they meet.