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.

The impact on employment and education of caregiving for a family member with young onset dementia: A scoping review.

Young-onset dementia (YOD) affects individuals under 65 years of age, often leading to loss of employment and independence. Families provide increasing levels of care to family members with YOD, resulting in changes to their daily lives, including their occupational pursuits. This review examines evidence of the occupational implications for family members who provide care to a family with YOD to identify: (i) the influence and impact caregiving tasks and responsibilities have on employment, volunteering, and education, and (ii) caregiver, and caregiving situation factors associated with changes in employment, volunteering, and education. A scoping review was performed using eight electronic databases. Included articles were narratively synthesized using a thematic analysis. Sixteen studies met the inclusion criteria and were included for review. The over-arching (main) theme of 'decision-making' was identified, with family members required to make choices about their own occupational goals and roles to be able to provide care to family living with YOD. The outcomes of these decisions are dynamic and changeable across the caregiving trajectory. Three caregiving factors influence decision-making: (1) Implications of Combining Caregiving and Occupations, (2) Altered Identity (3) Strategies to Support Caregivers of Individuals Living with YOD. A fourth theme was also identified 'Guidance for Researchers To Support Caregivers'. There is a scarce body of literature examining the influence caregiving has on occupational outcomes for the YOD caregiver population. Much of this work is descriptive and lacks focus on the implications, particularly long-term impacts. This review provides a foundational guide for future research and practices to support YOD family caregivers to obtain and sustain occupations.

Get-togethers: Guided Peer-Support Groups for Young Carers.

To address Young Carers' (YCs) needs for space and opportunities to reflect and exchange, a guided peer-support programme, the "Get-togethers", was developed in collaboration with YC in Switzerland in 2018. In order to evaluate if the Get-togethers were able to meet their originally set goals of (1) strengthening support among YCs, (2) promoting their life skills, (3) strengthening their social network and (4) promoting the inclusion and participation of YCs, participants of the Get-togethers were asked to complete a short questionnaire about their participation in and experiences with the Get-togethers. We also analysed the standard documentation of 17 Get-togethers held between May 2021 and September 2023. Overall, the Get-togethers were rated positively in almost all areas of the survey and the documentation, indicating that the four originally set objectives of the Get-togethers were (at least largely) achieved. The Get-togethers covered a large part of the needs of YCs, such as emotional support and opportunities to relax and exchange with people in a similar situation, yet they largely failed to reach minor YCs and male YCs. Further support programmes should be developed to address the different needs of different groups of YCs.

Young carers supporting a relative with cancer: What is the healthcare professionals' knowledge in France? An exploratory study.

PURPOSE: Many children and adolescents support relatives with cancer. However, literature about young carers (YCs) shows a lack of awareness among professionals, especially in oncology. This quantitative study aims to explore the level of knowledge and perceptions of healthcare professionals working with cancer patients about the situations and characteristics of YCs. METHODS: 395 professionals participated in an online survey. Professionals reported sociodemographic and professional information and answered several questions evaluating their perceptions about YCs, such as the types of support provided and the consequences of being a YC. Descriptive analysis and group comparisons (Chi-square, Mann-Whitney U, and Kruskal-Wallis tests) by sex, occupation, and patients treated (adult and/or pediatric) are performed on the data collected. RESULTS: Overall, per the literature on YCs, professionals provide an adequate description of what a YC can be, even though one in two professionals have never heard the term. Several differences are observed: Men mention fewer types of support that YCs can provide, while women report more negative consequences of being a YC; psychologists and social workers report fewer positive impacts for these young people than the other professionals; professionals who work with pediatric patients mention fewer negative consequences than those who work with adults. CONCLUSION: Oncology healthcare professionals have sufficient awareness of YCs; however, several professionals struggle to fully understand the situation of YCs. These findings underline the need for awareness programs in oncology to improve health professionals' understanding of YCs and enhance their identification and support.

Exploring the Lived Experiences of Caregiving for Older Family Members by Young Caregivers in Singapore: Transition, Trials, and Tribulations.

Amidst population ageing trends and epidemiological transitions, there has been a growing emergence of young family caregivers, about whom most studies have been conducted in Western countries. Their subjective experiences and perceptions toward caregiving remain underexplored in Asia. This qualitative study explored the lived experiences of caregiving for older family members by young caregivers in Singapore. Interpretative phenomenological analysis was employed to collect and analyse data from semi-structured, in-depth interviews with six young adult caregivers aged between 23 and 29. Interviews were supplemented with photo-elicitation techniques to deepen interview discussions and uncover experiential significance. Findings illustrated transitions into caregiving, challenges across role conflicts and expectations amidst developmental tasks and transitions, and navigation of intergenerational conflicts and ambivalence. Although no definitive conclusions can be reached from this small-scale study, the findings offer important insights into the convergence and intensity of young caregivers' experiences. Given that caregiving challenges are likely to continue amidst Singapore's rapidly ageing population, these necessitate further in-depth research efforts. Implications for policy and practice across multiple stakeholders interfacing with youth and older adults are presented. A whole-of-society approach is called for to enable young caregivers to realise their full potential while contributing to their ageing families and nation.

The experiences and impact of the COVID-19 pandemic on young carers: practice implications and planning for future health emergencies.

BACKGROUND: Young carers are children or young people aged up to 25 years old who undertake unpaid caring responsibilities for a friend or family member. Young carers faced significant challenges brought on by the COVID-19 pandemic. We explored the impact of the pandemic and associated restrictions on mental health, wellbeing and access to support in young carers in the United Kingdom (UK) to understand how to improve services, as well as support this population in future health emergencies. METHOD: We conducted 22 qualitative semi-structured interviews from May to November 2021 with 14 young carers and eight staff working in organisations that supported them. Interviews took place remotely over video or telephone call and explored participant experiences of the pandemic and its impact on their health, wellbeing and caring responsibilities. We used reflexive thematic analysis to analyse interview transcripts. RESULTS: We identified four overarching themes pertaining to the impact of the pandemic and associated restrictions on mental health, wellbeing and access to support in young carers in the UK: (1) challenges in protecting loved ones from the virus, (2) changes to and loss of routine, (3) reduced access to pre-pandemic informal and formal support structures and (4) better understanding of inner resilience and goals. Many participants struggled with their mental health and wellbeing as a result of pandemic related restrictions which impacted on support structures for themselves and the individual they cared for. However, positive impacts pertained to additional support provided by local authority and third sector organisations. CONCLUSIONS: Our findings highlight some of the changes that affected young carers during the COVID-19 pandemic. The impact of changes to routine and a reduction in pre-pandemic support were the greatest concerns reported by participants in this study. The additional support provided by local authority and third sector organisations during social restrictions suggests such organisations could play a greater role in supporting this population going forward and that schools and Governments may wish to put in additional strategies and provisions to protect young carers in the future.

Being a Young Carer in Portugal: The Impact of Caring on Adolescents' Life Satisfaction.

Caring for an ill or disabled relative can present significant challenges that may exceed the personal resources of the caregiver. Young carers (YCs) often take on this role, providing support to family members or friends, which can have far-reaching effects on various aspects of their lives. This study involved 235 adolescents, 106 YCs, and 129 non-carers (NCs), who completed questionnaires assessing life satisfaction, satisfaction with social support, family functioning, academic functioning, and caregiving activities. Tests of group differences (MANOVA and MANCOVA controlling for age) showed YCs had more caregiving activities than NCs (as expected) and, critically, significantly lower life satisfaction. Hierarchical regressions with the YCS subsample showed academic functioning, social support, and the negative impact of caregiving were associated with life satisfaction, and that the negative influence of caregiving was linked to family functioning and the quantity of caregiving activities. For NCs, academic functioning, satisfaction with social support, and family functioning were associated with life satisfaction. In conclusion, caregiving in adolescents appears to be linked to lower life satisfaction, but this effect is determined by their social support, academic functioning, and negative impact of caring, which in turn depends on their family functioning and amount of caring activities.

Voices from the Margins: Aotearoa/New Zealand Young Carers Reflect on Their Experiences.

Young carers are a largely invisible and unsupported population of Aotearoa New Zealand (NZ) children and youth aged 25 years and under who physically, emotionally, socially, and/or spiritually support loved ones experiencing ill health, disability, substance misuse, mental illness, or advanced age. The total number of young carers in NZ is unknown because census data only capture those aged 15-25. The nine published NZ studies recommend further research, policies, and services for young carers. However, there is a lack of young carer voices to inform their implementation. This paper provides insight into the experiences and needs of 28 young carers, the largest self-identified cohort in NZ research. Throughout phenomenographic interviews, young caring was described as a natural and valued part of being in a whanau/aiga/family, aimed at supporting their loved one's holistic wellbeing. However, the overwhelming nature of caring without recognition or support resulted in poor educational, social, and mental health outcomes for young carers. This paper concludes with a contextualised NZ young carer definition and an urgent call to address the Carers' Strategy Action Plan and listen to, and deliver on, young carers' expressed needs.

Visibility as a Key Dimension to Better Health-Related Quality of Life and Mental Health: Results of the European Union Funded "ME-WE" Online Survey Study on Adolescent Young Carers in Switzerland.

This paper examines the health-related quality of life (HRQL) and mental health of adolescent young carers (AYCs) aged 15-17 in Switzerland, based on data collected within the Horizon 2020 project 'Psychosocial support for promoting mental health and well-being among AYCs in Europe' (ME-WE). It addresses the following questions: (1) Which characteristics of AYCs are associated with lower HRQL and with higher level of mental health problems? (2) Do AYCs who are less visible and less supported report a lower HRQL and more mental health issues than other AYCs? A total of 2343 young people in Switzerland, amongst them 240 AYCs, completed an online survey. The results show that female AYCs and AYCs with Swiss nationality more often reported having mental health issues than their male and non-Swiss counterparts. Furthermore, the findings show a significant association between receiving support for themselves and visibility from their school or employer and the HRQL. Moreover, AYCs who reported that their school or employer knew about the situation also reported fewer mental health issues. These findings can inform recommendations for policy and practice to develop measures aimed at raising the visibility of AYCs, which is the first step for planning AYC tailored support.

Factors Associated with the Quality-of-Life of Young Unpaid Carers: A Systematic Review of the Evidence from 2003 to 2019.

The aim of this review was to identify factors influencing the quality of life (QoL) of young people providing care for family members with chronic illnesses, disabilities, and/or mental health and substance abuse problems (young unpaid carers; YC), as well as the social-care related QoL measures. Focused and broad search strategies were performed in four databases, identifying 3145 articles. Following screening, lateral searches, and quality appraisal, 54 studies were included for synthesis. An inductive approach was used to synthesise the findings, grouping factors associated with YC QoL into interrelated themes: "perceived normality of role and identifying as a carer", "social support from formal and unpaid networks", "caring demands and their impact", and "coping strategies". No social-care related QoL measures for YC were found. This systematic review provides groundwork for the development of such a tool and emphasises the need for further studies allowing the investigation of the interrelated factors affecting YC QoL.

Identifying and Supporting Students with a Chronically Ill Family Member: A Mixed-Methods Study on the Perceived Competences and Role Views of Lecturers.

Young adult caregivers experience reduced wellbeing when the combination of family care and an educational program becomes too demanding. We aim to clarify the role views, competences, and needs of lecturers regarding the identification and support of these students to prevent negative mental health consequences. A mixed-methods explanatory sequential design was used. We collected quantitative data using a survey of lecturers teaching in bachelor education programs in the Netherlands (n = 208) and then conducted in-depth interviews (n = 13). Descriptive statistics and deductive thematic analyses were performed. Most participants (70.2%) thought that supporting young adult caregivers was the responsibility of the educational institution, and 49% agreed that it was a responsibility of the lecturer, but only 66.8% indicated that they feel competent to do so. However, 45.2% indicated that they needed more training and expertise to identify and support these students. All interviewees felt responsible for their students' wellbeing but highlighted a lack of clarity regarding their role fulfillment. In practice, their ability to identify and support these students depended on their available time and level of expertise. The lecturers required agreements on responsibility and procedures for further referral, as well as information on support and referral opportunities, communication skills courses, and peer-to-peer coaching.

Recruitment of Adolescent Young Carers to a Psychosocial Support Intervention Study in Six European Countries: Lessons Learned from the ME-WE Project.

Young carers provide a substantial amount of care to family members and support to friends, yet their situation has not been actively addressed in research and policy in many European countries or indeed globally. Awareness of their situation by professionals and among children and young carers themselves remains low overall. Thus, young carers remain a largely hidden group within society. This study reports and analyses the recruitment process in a multi-centre intervention study offering psychosocial support to adolescent young carers (AYCs) aged 15-17 years. A cluster-randomised controlled trial was designed, with recruitment taking place in Italy, the Netherlands, Slovenia, Sweden, Switzerland and the United Kingdom exploiting various channels, including partnerships with schools, health and social services and carers organisations. In total, 478 AYCs were recruited and, after screening failures, withdrawals and initial dropouts, 217 were enrolled and started the intervention. Challenges encountered in reaching, recruiting and retaining AYCs included low levels of awareness among AYCs, a low willingness to participate in study activities, uncertainty about the prevalence of AYCs, a limited school capacity to support the recruitment; COVID-19 spreading in 2020-2021 and related restrictions. Based on this experience, recommendations are put forward for how to better engage AYCs in research.

Young Carers' Needs and Changing Experiences during an Era of Austerity.

Many children caring for ill or disabled family members remain 'hidden' and 'invisible' in our communities. This study is the first to explore patterns of change, over time and throughout austerity, for children with caregiving roles to better understand how their lives differ from those of their non-caregiving peers. A survey of 2154 children, aged 9-18 years in the general population, and a further 21 children, aged 8-18 years and known to be young carers from the same English unitary authority, was conducted to gain an in-depth understanding of children's perceptions and experiences of what they do to help at home. This study shows that children with caregiving roles remain a distinctive group who assume more domestic and caring responsibilities than their peers, and who also perform many of these activities more frequently than young caregivers in 2001. Approximately 19% of the respondents in the general population showed signs of being in a caring role, double the percentage identified by the author in 2001, 72% of whom were from Black and Minority Ethnic backgrounds. Indicating over time higher levels of unmet needs among parents and other family members who are ill or disabled, these findings have important implications for professional policy, planning and practice across adult and children's services.

Childhood Adversities and Psychological Health of Adult Children of Parents with Mental Illness in Japan.

In this study, we seek to clarify whether the present-day experience of psychological distress among adults whose parents suffered from mental illness is related to their childhood experiences of abuse and neglect and their provision of emotional care for their parents during their school-age years. To this end, a web-based cross-sectional study was conducted. A total of 120 participants over the age of 20 who attended a self-help group responded (50% response rate); of these, 94 had a parent diagnosed with a mental illness, and these participants were included for data analysis purposes. Of the 94 respondents, 65 (69.2%) were highly distressed, as measured by a Kessler (K) 6 measure of ≥5. A logistic regression analysis revealed that the experience of providing emotional care for parents during school-age childhood was significantly related to high levels of distress in adulthood (OR = 3.48; 95% CI 1.21-9.96). For children of parents with mental illnesses, the effects of providing emotional care for parents during childhood may include long-term psychological distress. For this reason, mentally ill parents raising children need visiting community nurses or other professionals to provide emotional care on behalf of their children.

Undergraduate students' experiences of participating in a Danish respite programme for young carers-A mixed methods study.

BACKGROUND: Age-appropriate communication and interaction are essential when meeting young carers, requiring in-depth knowledge and experience. Volunteer programmes may enhance undergraduate students' competencies in this regard. This pilot study evaluated undergraduate students' perceptions of volunteering on the Buddies for Children and Youngsters (BCY) programme by assessing the extent to which students experienced an improvement in their relational and communication competencies and/or felt better equipped for their future work. METHODS: The researchers conducted a mixed methods study with a parallel design, focussing on undergraduate students from the University College of Northern Denmark within the field of nursing, teaching, pedagogy, physiotherapy, and occupational therapy. The students participated in the programme for at least 4 months. RESULTS: Forty-two students responded to a questionnaire, and 17 students were selected to participate in four focus groups. The results showed that participation in the programme improved the students' communication and relational competencies to some degree. The programme provided the students with experience of age-related communication on both informal and difficult topics, and of building relationships and solving relational challenges. Also, the programme generally equipped students for future work with young carers and children. CONCLUSION: In conclusion, the BCY programme is a relevant supplement to regular educational activities. Decision makers within politics of health, health planning and management, should therefore consider implementation of such programmes in relevant educational areas.

Getting the FACS: A Protocol for Developing a Survey Instrument to Measure Carer and Family Engagement with Mental Health Services.

Government policies recommend, and all stakeholders benefit, when mental health services meaningfully engage with carers and family. However, health service engagement with carers is inadequate, and often non-existent with children whose parents are service users. There are seven fundamental ways that carers and families want to be integrated with and engaged by health services but current survey instruments do not capture these seven engagement practices. This protocol describes the development of two closely aligned Family and Carer Surveys (FACS) to measure engagement of service users in mental health services. The new measures are based on the seven engagement themes and a conceptual distinction between the carer and family, with particular focus on where the service user is a parent. The instruments will be developed in five stages; (1) item generation (2) Cognitive pretesting of survey (3) preliminary item content quantitative assessment (4) psychometric analysis of a large data collection and (5) selection of items for short form instruments. These steps will operationalise the seven fundamental ways that families and carers want to be engaged with mental health services, thereby providing valid and reliable measures for use in research and benchmarking of carer and family engagement.

Professionals' Awareness of Young Carers in Schools: Results from a French Survey.

Few studies have investigated professionals' awareness of young carers (YCs). Therefore, the main aim of this study was to explore school professionals' awareness of YCs. The secondary aim was to compare professionals' responses according to their occupation. A total of 2658 professionals took part in this study by completing an online questionnaire. The results indicated that the mean for the perceived age for care beginning was 10.3 years old, with parents being perceived as the most frequent care recipient. The main caring activities reported were domestic chores, emotional support and sibling care, while care provided directly to the care recipient was perceived as less frequent. Many suggestions for improving the identification, referral and support of YCs were seen as relevant, but professionals were less supportive of suggestions for adjustments within schools. The key training needs centered around better identifying YCs and developing better knowledge of their difficulties. Differences were observed according to occupation, with administrative staff and teachers having less accurate perceptions than school counsellors as well as social and health professionals. This study shows that it can be difficult for school professionals to imagine a child providing care. Specific training, therefore, needs to be proposed according to school professionals' occupations.

Teachers' Perceptions of Supporting Young Carers in Schools: Identifying Support Needs and the Importance of Home-School Relationships.

Recognition and support for young carers has improved steadily in the past two decades; with stronger legislation and more visibility and awareness of the challenges that many of the YC face, especially with respect to their education. Recent UK-based initiatives providing toolkits and guidance for school staff have provided much needed direction for schools, to support the loosely defined statutory requirements. The aim of the current research was to hear from school staff about their experiences in identifying and supporting young carers, to better understand any enablers and barriers. The thematic analysis of the interview data from 18 school staff was organized into two main themes: perceptions regarding the characteristics of young carers; and perceptions regarding the importance of home-school communication. Each superordinate theme contained several sub-themes. Overall, the teachers perceived many difficulties identifying young carers who did not volunteer this information and felt that the main enabler of identification was the trust relationships between the school and the pupil and parents. Once identified, the schools perceived the main areas of need that they could provide support for were the emotional wellbeing of the pupils and additional academic opportunities. They spoke too of the difficulties balancing the provision of this extra support within the constraints of the school context, both in terms of the school day, and the competing priorities relating to academic and social-emotional needs. School staff recognized that extra time outside of school was difficult for young carers to attend. Other subthemes are discussed with consideration to enablers and barriers. The implications for the dissemination of good practice, and addressing policy are considered.

Research and Innovation for and with Adolescent Young Carers to Influence Policy and Practice-The European Union Funded "ME-WE" Project.

Young carers are children and adolescents who provide care to other family members or friends, taking over responsibilities that are usually associated with adulthood. There is emerging but still scarce knowledge worldwide about the phenomenon of young carers and the impact of a caring role on their health, social and personal development spheres. This paper provides an overview of the main results from the ME-WE project, which is the first European research and innovation project dedicated to adolescent young carers (AYCs) (15-17 years). The project methods relied on three main activities: (1) a systematization of knowledge (by means of a survey to AYCs, country case studies, Delphi study, literature review); (2) the co-design, implementation and evaluation of a primary prevention intervention addressing AYCs' mental health (by means of Blended Learning Networks and a clinical trial in six European countries); (3) the implementation of knowledge translation actions for dissemination, awareness, advocacy and lobbying (by means of national and international stakeholder networks, as well as traditional and new media). Project results substantially contributed to a better understanding of AYCs' conditions, needs and preferences, defined tailored support intervention (resilient to COVID-19 related restrictions), and significant improvements in national and European policies for AYCs.

Quality of Life of Schoolchildren Living with a Long-Term Sick Parent: The Role of Tasks at Home, Life Circumstances and Social Support.

This study investigates whether there are differences in quality of life-i.e., psychosomatic complaints and life satisfaction-between schoolchildren with and without a chronically ill or disabled parent at home. It also examines the role played by the intensity of tasks, life circumstances, and social support at home and school. In 2017, a Dutch representative sample of adolescents aged between 12 and 16 (from the Health Behaviour in School-aged Children study) completed a questionnaire about illness of family members, tasks at home, life circumstances and characteristics, social support, psychosomatic complaints and life satisfaction. In total, 5470 schoolchildren who did not have a parent with a chronic illness and 652 who did have a parent with a chronic illness were selected (average age 13.9). Stepwise multilevel logistic regression analyses in STATA were used. Schoolchildren with an ill parent had more psychosomatic complaints and lower life satisfaction than their counterparts without an ill parent, even when controlling for extra task hours, specific life circumstances and characteristics (e.g., more likely to be growing up in a single-parent family or stepfamily and more likely to be female), and lower perceived support. These aspects are also predictors of a lower quality of life. Professionals should address these aspects of the life of schoolchildren with a sick parent in such a way that they are facilitated to make a successful transition to adulthood.