Young Carers Research Articles

Understanding young caring in the UK pre- and post-COVID-19: Prevalence, correlates, and insights from three UK longitudinal surveys

BackgroundDespite increasing awareness of young carers in recent years, there remains a significant gap in our understanding of both the prevalence and the characteristics of young carers. Our study aims to address this gap by examining the impact of the COVID-19 pandemic on the prevalence and characteristics of young carers. MethodsThis research utilised data from three UK longitudinal surveys: the UK Household Longitudinal Study (UKHLS), the COVID Social Mobility and Opportunities (COSMO) study, and the Millennium Cohort Study (MCS). We focused on adolescents aged 16–18, and examined two pre-COVID (UKHLS and MCS) and two post-COVID (UKHLS and COSMO) samples. ResultsThe prevalence of young carers increased from 8.0 % pre-COVID to 9.8–11.9 % since COVID. Young carers were more commonly found in single-parent and socioeconomically disadvantaged households, with a higher prevalence of young carers in homes where parents were out of paid employment or held lower educational qualifications. Young carers were also more likely to reside in deprived areas. Most young carers engaged in low-intensity caring (< 10 h/week), but post-COVID there was an increase in high-intensity caring (10 + hours/week), predominantly assumed by young female carers. The primary recipients of care were parents, followed by grandparents and siblings, with no change in the care recipient type since COVID. ConclusionThis study showed an increase in the prevalence of young carers, particularly those providing high-intensity care, since the onset of the COVID pandemic. Further, young carers were more likely to come from socioeconomically disadvantaged households and areas. Given the potential impacts that young caring can have on young peoples’ lives, it is imperative that support for young carers is increased, particularly for those facing multiple disadvantages. In tandem, services that support adult health and social care need to play a key role in identifying young carers.

Supporting young carers across neurological disorders

Supporting young carers across neurological disorders

Young carers in Ghana: caring activities, ways into care and the impacts of caregiving

ABSTRACT In Ghana, children often provide care and support to family members with disabilities, mental illnesses and other health conditions. Understanding the nature of their caring activities is essential for identifying stressors and promoting better health and wellbeing outcomes for this group of children, described in the wider literature as young carers. This qualitative study investigated the nature and impact of caring activities on young carers aged 11–17 years. The findings revealed that young carers provide domestic, financial, medical and personal care. Caring activities while beneficial, result in a double burden, as young carers often support both the care recipients and their dependents. Despite the challenges associated with caring activities, the study also reveals the myriad reasons young carers enter care work, suggesting that the work of young carers is not simply an obligation or a choice but a process and an integral part of Ghanian family structures. The study highlights the urgent need for formal mechanisms to identify and support young carers and their care recipients in Ghana.

Promoting Mental Health and Well-Being Among Adolescent Young Carers in Europe: A Cross-National Randomized Controlled Trial Study.

This cross-national study focuses on adolescents who provide care and support to family members or significant others. Current evidence regarding their mental health and solutions to strengthen it is limited and mostly available in a few countries. The aim of this study is to evaluate the results of a primary prevention intervention for improving the mental health and well-being of adolescent young carers (AYCs) aged 15-17 years in six European countries. The intervention was based on a psychoeducational program and tools adapted from the Discoverer, Noticer, Advisor, and Values (DNA-V) model. We designed a randomized controlled trial with 217 AYCs participating in the study, either in the intervention or control group. Quantitative and qualitative data were collected via questionnaires at baseline, post-intervention, and a 3-month follow up. The results were mixed, as positive improvements in primary (i.e., psychological well-being and skills) and secondary (school/training/work functioning) outcomes were shown by the experimental group but, in most cases, they were not statistically significant. The qualitative data supported positive claims about the intervention and its appropriateness for AYCs. The study implementation during the peak of the COVID-19 pandemic forced the consortium to adapt the design and may have influenced the results. More long-term studies are needed to assess similar mental health programs with this hard-to-reach target group.

The challenge of identifying young carers in the US: how state laws put families at risk for separation

The challenge of identifying young carers in the US: how state laws put families at risk for separation

Examining psychosocial vulnerability in caregivers of individuals with a chronic haematological malignancy. A cross sectional survey.

ObjectiveTo investigate psychosocial vulnerability in informal caregivers of chronic haematological cancer patients and determine the level of psychosocial vulnerability among carers of people living with a CHM. MethodsAn international cross – sectional study including caregivers of individuals with a chronic haematological cancer (n=64) from Ireland (n=29), Australia (n=21), the UK (n=4), the USA (n=4), and India (n=6). Caregivers completed scales for loneliness, resilience, stress and caregiver strain using the UCLA scale, BRS scale, PSS scale and MCSI scale. Descriptive statistics and non-parametric techniques were used. ResultsThe results show that younger carers (aged between 18-40) report higher levels of loneliness, stress and caregiver strain. Carers who have left their paid employment due to caregiving and are in receipt of carers’ allowance or social welfare report high levels of loneliness and caregiver strain. Lower stress levels were reported in those who received paid professional caring support. Finally, higher levels of loneliness in carers were associated with the patient currently being on some form of treatment and higher levels of caregiver strain were associated with caring for someone for more than 8 hours per day and having all social, mental, and financial areas of life affected ConclusionCaregivers of patients with chronic haematological cancers experience psychosocial vulnerability, which is associated with their age, socioeconomic status, gender and health and wellbeing.

Types and aspects of support that young carers need and value, and barriers and enablers to access: the REBIAS-YC qualitative study.

Many children and young people in England provide support to family members who are disabled, have mental or physical ill health, or misuse drugs or alcohol. Providing care can negatively impact children and young people's education, employment, health and social participation, with associated costs. Support is needed to prevent and reduce these negative impacts. The study sought to provide new knowledge and address prior research gaps regarding how best to support young carers from their perspective and that of the people they care for. To address the following questions: What types, components or features of services and other support are seen as helpful, valued, and acceptable to young people who look after someone at home and the people they support? Conversely, what is found to be less or unhelpful? What additional support is perceived as needed? What are the barriers experienced by young and young adult carers in seeking and accessing services for themselves or the person they support? What are the barriers and facilitators for practitioners in providing support and services perceived as valued, helpful and needed by young and young adult carers and the people they support? In-depth qualitative methodology using focus groups, in-depth semistructured interviews and workshops in four localities in England. One hundred and thirty-three carers aged 9-25 years with a range of caring and life circumstances and sociodemographic characteristics. Seventeen adult care recipients (parents) with a range of physical and/or mental healthcare and support needs. Nineteen practitioners from schools, colleges, young carers organisations, voluntary sector services, mental health services, the National Health Service, adult social care and local authority adult and children's social care commissioners. The types and aspects of support that young carers and their families need, and value when received, include: support that reduces or removes their practical and emotional caring responsibilities; support to mitigate the negative impacts of care and help with other life issues; information and advice about services and wider resources and support; someone trusted available to talk to; greater awareness, recognition and understanding; and choice, flexibility, and co-development of plans and solutions. We found a great deal of unmet need for support, and variation in type and quality of support received, including geographically. Potential limitations are that we were not able to engage with, or recruit, young carers from some intended subgroups, meaning some perspectives are missing. Partly because of COVID-19 measures during the study, we mainly recruited through young carers organisations and their family projects, although this was balanced by recruitment through schools and extensive outreach and engagement by the collaborating organisations prior to the project starting. Action is now needed to consistently and sustainably implement the types of support that young carers and the people they care for say they need and value. Future work should include more research from the perspectives of young carers and the people they care for, especially from particularly marginalised groups; and research to understand what works and how to improve implementation of the support needed and valued. This study is registered as Current Controlled Trials ISRCTN13478876. https://doi.org/10.1186/ISRCTN13478876. This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129645) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 36. See the NIHR Funding and Awards website for further award information.

The psychosocial outcomes of young carers in Australia: a scoping review

ABSTRACT Young carers in Australia are people aged under 25 who undertake a substantial familial caring role. A range of associated disadvantages with this practice have been identified, however, no systematic literature review currently exists to consolidate the Australian research. Articles were included if they used a broadly quantitative methodology, were in English, and published since 2002 using original, contemporary Australian data and specifically discussed the caring role. The following databases were searched: Psychology and Behavioral Sciences Collection, APA PsychInfo, APA PsycArticles, MEDLINE Complete, Academic Search Complete, CINAHL with Full Text, Child Development & Adolescent Studies, APA PsycTherapy. Fourteen articles were included, and synthesised using a narrative style, capturing detailed information on approximately 8000 young carers, and briefer census-style data on 128,000 young carers. Quality ratings and risk of bias analyses were included. It was found that young carers exhibit a range of disadvantages across academic, social, and mental health domains, particularly when the care recipient is a parent, and even more so if the care needs are related to mental health or substance use. Additional research is required to further explore the relationships between the young caring role and outcomes.

A narrative review of community wellbeing programmes and the reported outcomes for young carers

Wellbeing programmes have the potential to support young carers in their formative years. However, there is a scarcity of research into wellbeing programmes for young carers and their associated outcomes. This review aims to identify targeted community programmes that support the mental health and social wellbeing of young carers and their outcomes through the academic literature. An initial search of databases retrieved 335 articles, with ten meeting the inclusion criteria. Findings were organised thematically according to the programme outcomes: improvement in emotional wellbeing and quality of life; the development of new skills; respite from caring; and social connectedness and peer support.

The feasibility and acceptability of delivering a group trauma-focused intervention to children in care.

Young people in care (i.e., in the child welfare system) are a group who have often experienced very high rates of potentially traumatic events, including maltreatment. It is well-documented that they have high rates of trauma-related mental health difficulties, such as posttraumatic stress. To address the needs of the large number of young people who may benefit from support, scalable interventions are crucial. But also important is that they are effective and deliverable - particularly given the complexity of this group and services. We assessed a five-session group CBT-based intervention for PTSD. The primary goal was to understand core procedural and protocol uncertainties to address prior to a definitive trial. Participants were 34 10-17 year olds in care, with moderate to severe posttraumatic stress symptoms, and their caregiver. We ran seven groups (four online), delivered in social care and NHS-based mental health teams. Data were collected via pre-, post-, 3-month follow-up questionnaires and qualitative interviews. Of the 34 participants allocated to the intervention, 27 (80%) attended at least three of the five sessions (most attended all). Caregiver attendance was lower (50%). There was generally good completion of assessment measures. Qualitatively, most participants were positive about the intervention, and many reported improvements in areas such as coping, sleep, and willingness to talk about experiences. However, there were important concerns about the lack of ongoing support, given this was a low-intensity intervention for a group who often had complex needs. The intervention and research protocols were acceptable to most young people and carers. With modifications, a future definitive trial would likely be possible. However, key considerations include: how (and whether) to screen for PTSD; the trial design; and the option to embed high-intensity support (e.g., via assessing a stepped-care model).

Contextually Sensitive Polyvictimization Profiles and Physical and Mental Health Outcomes among South African Adolescents from Low-Resource Communities: An Extended Latent Class Analysis

Adolescents in South Africa may experience violence victimizations in many forms (abuse, bullying, assault) and across many contexts (home, school, community). Polyvictimization is a valuable framework to examine the diversity of violence in adolescents’ lives, particularly when employed alongside person-centered methods such as latent class analysis. This study builds on previous work examining contextually sensitive patterns of polyvictimization among South African adolescents and uses longitudinal Young Carers data (n = 3401) from highly-deprived, low-resource settings to investigate the associations between latent class polyvictimization profiles and physical and mental health outcomes using the Bolck–Croon–Hagenaars (BCH) method. Key results found that adolescents who experienced high polyvictimization alongside contextual factors (poverty, disability, etc.) had greater odds of suicidality and higher scores for depression and anxiety measures than their peers who experienced moderate or low polyvictimization. These outcomes were often worse within the high polyvictimization classes for those participants experiencing burdens of HIV/AIDS and disability. Results were mixed for the physical health outcomes (chronic health condition; recent poor health) and when distinguishing between the moderate and low polyvictimization classes, as some classes characterized by decreased polyvictimization had worse health outcomes. These findings highlight the need to consider polyvictimization as a relevant health risk and contextual factor when addressing the health and well-being needs of South African adolescents. Health programming and policy efforts should seek to screen for and address the causes of and distress from polyvictimization when targeting adolescents and provide a cohesive response to the adolescent violence and health burdens in low-resource communities.

A relational approach to youth healthcare: Examining young people's, parents' and clinicians' experiences in the context of variations in sex characteristics

According to popular understandings, children grow from a state of dependence to eventually become independent adults. Interdependence helps to disrupt the in/dependence binary and is a useful concept for making sense of the experiences young people with variations in sex characteristics in relation to healthcare. This study used semi-structured interviews with 32 health professionals, 33 caregivers and 12 young people recruited in the UK and Sweden. The analysis is guided by the questions: (1) how do young people, carers and health professionals position themselves in the adult/young person relationship in the context of healthcare? (2) how is the (in/ter)dependence of young people imagined when young people, carers and health professionals talk about healthcare? Our analysis shows how carers and health professionals might support dominant understandings about young people growing towards independence while providing little opportunity for young people's agency and voice. Interviews with young people gave clear examples of their negotiating relational ways of being, seeking agency in the context of healthcare and not simply becoming independent of adults. This analysis also draws attention to the ways young people might be silenced within healthcare contexts. The present paper is based on secondary analysis of data from the SENS. It works with concepts of relationality and interdependence to draw out the possibilities of voice and agency for young people with variations in sex characteristics in healthcare contexts.

가족돌봄청소년을 위한 지원 프로그램 연구

This study proposes basic data for preparing programs for each area so that thenewly launched support for young carers can be comprehensively prepared, including theirfuture preparation, beyond supporting care-oriented households. This study is based on theChild Welfare Act, the Basic Act on Youth, and the Basic Act on Young Adult, and refers tooverseas cases and targets “young carers under the age of 34” so that young carers canreceive individualized and effective service support under the basis of early investment theoryand preventive welfare policy. It is argued that it will lay the foundation for various policiessuch as raising public awareness, building a network of young carers, emotional support, capacity building, and employment. To this end, first, preventive interventions thatcan reduce the number of young carers are studied; second, focusing on allowing society totake care of young carers before they develop dysfunction by discriminating them morepreferentially; and third, raising awareness of society as a whole for young carers; fourth,strengthening social capital; fifth, it proposed a special Korean-style program for young carersthat can add joy and immersion along with welfare services.

Evaluation of a service introduced to support young people at risk of suicide using a cohort design, a mixed methods analysis and cost-benefit analysis

This evaluation sought to determine to what extent a suicide prevention service, designed for young people at severe risk of suicide, was successful in reducing suicide risk and distress and improving well-being outcomes. The 3-month service was co-designed at the height of the COVID-19 pandemic in Melbourne, Australia, with young people and carers who had lived experience of youth suicide. The evaluation involved a mixed methods analysis of data collected during the first 20 months of operation, from February 2022 to September 2023. Ninety one young people were admitted to the service during this period, of whom 28 agreed to participate in the evaluation. Primary data were collected by telephone or online, and secondary data for hospital service use were collected for 70 of the young people. Analysis found that there were significant reductions in suicide risk and psychological distress at discharge, associated with significant improvements in quality of life and reductions in the use of hospital services. Qualitative analysis supported these survey results, highlighting the peer and psycho-social support as particularly beneficial aspects of the service. However, the qualitative analysis also indicated that some individuals felt the service was too short and abruptly ended, with insufficient attention paid to the creation and maintenance of support services that could continue after discharge. A small sample size was a limitation of this study, particularly for the three and six month follow-up surveys. Also, the cost-benefit analysis included secondary routine hospital admission data covering only 12 months. Nevertheless, the overall findings are positive, suggesting that services of this nature can have real benefits for young people at serious risk of suicide. It is likely that an extension of the cost-benefit analysis, to allow for benefits beyond a one year period, would have suggested that the benefits outweigh the costs.

The Sacrificed Children: Listening to the Voices of Former Young Carers Supporting Parents with Mental Illness

Abstract Numerous studies have indicated that parents who are affected by mental illness experience emotional/behavioural difficulties which can have major impacts on parenting and the child–parent relationship. However, research on the experiences of young carers living with a mentally ill parent and the adversity they face remains comparatively limited. This article reports findings from a qualitative and retrospective study undertaken with nineteen Taiwanese adults who were young carers of parents with mental illness to capture their entire childhood experiences. The study was guided by social constructionism with the aim to listen to the voices of former young carers and explore their sense of responsibility, their response to family and societal expectations and how these affected their lives. The study finds the young carers’ sense of responsibility was grounded on the principle of filial piety, which greatly influenced young carers not only actively in response to the parent’s needs but also in prioritising the parent’s demands. Participants felt responsibility and sacrifice interwoven in the context of their lives. Implications for social services and policy makers are suggested in order to meet the needs of young carers and their families.

Involved but not included: young carers’ experiences of professional support while growing up with a parent with mental ill-health

ABSTRACT Children growing up with a parent with mental ill-health are a hidden and vulnerable group. Positioned at the intersection between adult and children services, and health and social care, these children fall between the gaps, rarely acknowledged in policy or practice. This is exacerbated when the young person is excluded under the auspices of patient confidentiality and age appropriateness. This article reports findings from research which captured young carers’ retrospective accounts of professional support when caring for a parent with mental illness. Participants in this research study described being ‘involved but not included’; they provided significant care to their parent and were relied on by professionals to provide support. However, they were simultaneously omitted from any discussion or understanding of the decisions made. This article explores the relevance of these accounts for current service provision. It concludes with recommendations for involving young carers in care planning and ensuring that young carers have their own needs assessed and acknowledged by professionals.

Basic Conditions for Support of Young Carers in School: A Secondary Analysis of the Perspectives of Young Carers, Parents, Teachers, and Counselors.

Young carers face a variety of challenges at school. While schools can be vital places of support, the assistance they receive at school often seems selective and fails to consider the unique life situations of individual students. This paper examines the perspective of multiple actors in the student's school environment and explores how schools can develop comprehensive, sustainable support systems for young carers-systems that consider and involve as many actors as possible in the student's school environment. In a secondary analysis of two interview studies, we analyzed how young carers as well as their parents, teachers, and school counsellors perceived the school support the carers received. We then developed an integrated model that incorporates these differing perspectives. The model offers an approach for implementing low-threshold support for young carers within existing school structures in relation to their family situation and outlines conditions that can support both recognized and "invisible" young carers, as well as other students.

Older Carers and Social Division of Welfare in China

This study used the social division of welfare approach to analyze how Chinese older carers have access unequally to pensions, medical insurance, and public assistance schemes. Face-to-face interviews were conducted with 40 older carers aged 60 years or above who were taking care of their family members with disabilities or chronic illnesses. The amount of pension and coverage of medical insurance of these respondents and their care recipients was affected by their employment, types of employers, and living locations. Moreover, the older carers’ capacity to address financial and medical burdens was associated with the available support from their family members, especially their adult children. This paper concludes that the social division of welfare amongst older carers was driven by China’s market-oriented pension and medical insurance reforms, decentralization of welfare provisions, and the welfare capacity of families. Future studies can examine the social division of welfare among young and minority ethnic carers and adopt a comparative approach to analyze factors shaping unequal access to welfare benefits among older carers in different countries.

“Crafting a ‘TransitionOmeter’: A Proposed Framework for Developing and Honing Capabilities of Young People Transitioning to Adult Healthcare Services.”

ABSTRACT This paper focuses on an innovative approach to preparing children and young people, with Spina Bifida, to move from child-centered to adult-oriented healthcare systems. Reflecting on our role in delivering a national nurse led service, we set to identify and critique international transition tools in use for this population. Specifically, we aimed to identify the core capabilities and indicators of progression to successful transition, so that holistic interventions could be planned to match the needs of individuals and their carers. There were two phases to the study, initially focusing on a systematic literature review on transition tools and the specific items that these tools captured, including skills, abilities and behaviors. Phase two culminated in the articulation of a segmented and incremental “road map”, aligned with facets deemed essential for a successful healthcare transition. The reporting of the literature review (phase one) followed the PRISMA guidelines and shaped the qualitative element of the study (phase two) through the use of semi-structured interviews and thematic analysis. The search strategy yielded 11 studies, which were then manually searched for other relevant literature, adding a further 14 articles. The review analyzed 7 specific tools for spina bifida and 8 generic tools, which were deemed appropriate for this group of patients. A comprehensive list of core capabilities was then articulated and framed to fit a progression timeline. Specific interventions were formulated to explore ways to co-produce resources that could enhance and support a planned transition to adult-focused services. Our proposed mapping of capabilities and progression could shape other transition programs, where nurses work collaboratively with young people, carers and other members of a team. More work is needed to further explore and embed the framework that, as we did, could be digitized and shared with all stakeholders involved in the transition process.

Young carers' experiences of services and support: What is helpful and how can support be improved?

Globally, many children and young people provide support to family members who have poor physical or mental health, are disabled, or misuse drugs and alcohol. These young carers are at higher risk of poorer education, employment, health, and social participation outcomes compared to their peers without caring responsibilities. In the UK, awareness of the challenges faced by young carers, and a framework of their legal rights, are relatively well-developed. However, it is unclear how support can most effectively be provided. Taking a qualitative approach we explored experiences and views of young carers (aged 9-25), conducting focus groups or interviews with 133 young carers and 17 parent care recipients. We explored what aspects of services and support are seen as helpful, valued, and acceptable to young people, and what could be improved. A reflexive, thematic analysis was conducted. Valued support came from: young carers groups (including peer support), school-based and mental health support, and support for the care recipient. Helpful aspects of support included someone who listens and understands, and can be trusted not to break confidentiality; involving the young person in information, decision-making and planning (sometimes including regarding the care recipient); and finding and linking to other services. There was a difficult balance for practitioners between being perceived as proactive, persistent or intrusive when offering support to a young carer, but it was important to allow opportunities for young carers, and those they care for, to change their minds about when and whether to access support. Many interactions were perceived as unhelpful or threatening to the family, and there was often not enough of the type of support that was valued. Sharing of positive experiences can be beneficial for both people seeking support and those delivering it; key messages on what is helpful from the perspective of young carers can help support and shape practice approaches.