No Young Carer Left Behind: A Two-Phased Study to Understand and Address the Needs of Young Carers from Rural and Urban Communities Before and During Covid-19

Canada has one of the largest cohorts of young carers aged 15 to 24 who provide unpaid care for a family member. Although the body of research on young carers is growing in Canada, knowledge on the experiences and needs of young carers living in remote and rural communities is almost absent. This study aimed to understand and address the needs of young carers in rural/remote communities to support our community partner’s goal of expanding their resources and support of this underserved population. The study was conducted in two phases with the first phase being a needs assessment and the second phase addressed those needs. In Phase 1 (conducted pre-COVID-19), three focus groups were conducted with young carers from rural and urban communities with 20 young carers participating in total. Six themes were identified: Internet Usage in Daily Life; Finding and Filtering Information; Concerns Related to Internet Use; Social and Mental Support; What Makes Caregiving More Challenging; and Designing Something to Make Caring Easier. During Phase 2 (conducted mid-COVID-19), 2 focus groups were held via Zoom for Healthcare with a mix of rural and urban young carers in each group. One of the focus groups was held with those under 18 years old and the other included those between 18 to 25 years old. Four themes were identified: Responses to Emergencies; Awareness of Emergency Planning; Potential Impact on Planned Behaviour; and Considerations and Suggestions for Improvement.

Well-Being and Perceived Stress of Adolescent Young Carers: A Cross-Sectional Comparative Study

Adolescent young carers have been described as a hidden group at risk of mental health problems. However, research has not yet clarified the effect of caring when considering the related family situation. We aimed to examine the impact of a caring role on adolescents’ mental health and to gain knowledge about adolescent young carers’ specific needs. We collected cross-sectional data from adolescents (15–21 years, N = 2525) recruited through educational institutions in German-speaking Switzerland. Based on self-reported answers regarding the presence or absence of a family member with health problems and youth’s caring activities, the participants were grouped into three subsamples. We compared mental health outcomes (well-being and perceived stress) in current carers and their peers, and we conducted multiple regression analyses for predicting these outcomes among all adolescents and the subsample of carers. Adolescent young carers had lower levels of well-being and higher levels of perceived stress than their peers. However, when controlling for background variables, well-being levels were lower only when carers were compared to adolescents from a healthy family background. Indicators of family instability predicted mental health outcomes independently of being a carer. More recognition for the caring role predicted better well-being and perceived stress outcomes, and more support in caring predicted better well-being but not perceived stress outcomes. The findings suggest that a caring role is not necessarily related to decreased well-being in adolescents, but it is associated with higher levels of perceived stress. The way professionals and services respond to young carers’ specific needs should be improved.

Variations and Patterns in Sleep: A Feasibility Study of Young Carers in Families with ALS

Introduction: Children and youth under the age of 19 provide daily care for family members living with illness, including Amyotrophic Lateral Sclerosis (ALS). Caregiving affects school performance, social support, stress, and anxiety. Yet, little is known about potential disruptions in sleep. Methods: A quasi-experimental matched comparison of age- and gender-matched young carers (n = 8) and non-carers (n = 12) was used in this study. Participants completed a pre/post survey, wore an actigraphy device, and journaled sleep/wake times for 5 days. Results: Young carers had shorter sleep duration (t = 51.19 (11.99)), efficiency (t = 55.49 (14.00)), sleep quality (t = 51.32 (12.26)), and higher rates of utilizing sleep medications (t = 50.81 (11.49)). The case study sleep data showed that carers had lower total sleep time (CG = 6.75 ± 1.47, NCG = 7.08 ± 1.36) and sleep efficiency than non-caregivers (0.80 ± 0.23). Case examples were reported across groups. Conclusions: The study results demonstrate feasibility, while providing crucial initial case data on sleep quality in young carers. The findings underscore the need to better document the impact of caregiving on young carer’s well-being across several areas, including sleep. This data has implications for larger scale studies examining how sleep disruption impacts well-being more broadly and in providing support and respite interventions for young carers across disorders.

‘My Contributions Made a Significant Difference’: Young Carers’ Reflections on Their Participation in Social Work Admissions

Whilst the participation of service users and carers (SUCs) in Social Work admissions (SWAs) has significantly developed over the past decades, concerns have been raised about the tokenistic nature of SUC involvement (Barnes, D., Carpenter, J. and Bailey, D. (2000) ‘Partnerships with service users in interprofessinal education for community mental health: A case study’, Journal of Interprofessional Care, 14(2), pp. 189–200) particularly in relation to young people (YP). Liverpool John Moores University (LJMU) in partnership with Barnardo’s Action with Young Carers Liverpool have (BAWYC) worked to develop meaningful participation for YP in SWA. In this article, we discuss our approach to YPs’ participation, exploring their experiences of involvement. Using a co-production approach, drawing on participatory action research methodology, we utilise in-depth interviews from a purposive sample of young carers (YCs) to ask questions about the nature of YPs’ participation including: How meaningful they consider their involvement; what are the outcomes and benefits and what are the continuing barriers? Adopting a reflective thematic analysis, research findings indicate that YCs feel valued and respected in their SWA role, and surprised at the level of involvement and decision making ascribed to them. They report personal development and feelings of self-worth and increased confidence, helping them to consider their own futures in a more aspirational way.