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.

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.

Adolescent Young Carers Who Provide Care to Siblings.

A child's disability, long-term illness, or mental ill-health is known to affect siblings' health, social life, school engagement, and quality of life. This article addresses a research gap by its focus on young sibling carers and the impact of providing care to a sibling. A cross-national survey study was conducted in 2018-2019 (Italy, the Netherlands, Slovenia, Sweden, Switzerland, the UK) to examine the incidence of adolescent sibling carers, the extent of care they provide, and their self-reported health, well-being, and school situation. The survey was completed by 7146 adolescents, aged 15-17, and 1444 of them provided care to family members with health-related conditions. Out of these, 286 were identified as Sibling Carers and 668 as Parent Carers, while 181 had both sibling(s) and parent(s) with health-related conditions, and thus were identified as Sibling-Parent Carers. Sibling Carers and Sibling-Parent Carers carried out higher levels of caring activities compared to Parent Carers. They reported both positive aspects of caring, such as increased maturity, and negative aspects, such as mental ill-health, impact on schooling and a lack of support. To reduce the negative aspects of a sibling carer role, it is important to recognise them and to implement early preventive measures and formal support.

Adolescent Young Carers Who Provide Help and Support to Friends.

Prior studies emphasize the value of friends' support for children/adolescents who have a disability or suffer from mental ill-health or a long-term illness. However, few studies have explored how a caring role affects those young friend carers themselves. This paper addresses a gap in the research by focusing on this hitherto neglected group of young carers to explore the impact of providing care to friends. An online survey was employed for a cross-national study conducted in 2018-2019 in Sweden, Italy, Slovenia, the Netherlands, Switzerland, and the United Kingdom to examine the incidence of adolescent young friend carers, the extent of care they provide, and their self-reported health, well-being, and school situation. The survey was completed by 7146 adolescents, aged 15-17, and 1121 of them provided care to a friend with a health-related condition, most frequently mental ill-health. They carried out high levels of caring activities, and a quarter of them also provided care to a family member. They experienced both positive and negative aspects of caring. Nevertheless, in comparison with adolescents who provided care to family members, they reported more health problems, with a dominance of mental ill-health, and they received lower levels of support. Since adolescent friends play a valuable role for young people with health-related conditions, especially mental ill-health, it is important to find ways of optimizing their caring experiences in order that those adolescents who choose to care for a friend can do so without it having a negative impact on their own mental health, well-being, and life situation.

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.

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.

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.

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 Adolescents Facing a Parental Illness: A Person-Oriented Approach.

Studies that have investigated the health-related quality of life (HRQoL) of adolescents facing a parental illness showed inconsistent results, and none used a person-oriented approach allowing for a deeper understanding of their experience. The aim of this study was to compare the HRQoL of adolescents facing a parental illness to that of their peers, and to explore their HRQoL through a person-oriented approach. The sample consisted of 1324 adolescents recruited in secondary schools (11-15 years old). Adolescents completed questionnaires assessing sociodemographic characteristics, parental illness, HRQoL (KIDSCREEN-52), and academic performance and caring activities (MACA-YC18). Adolescents facing a parental illness showed significantly lower HRQoL than their peers on all dimensions. The cluster analysis yielded five patterns of HRQoL among adolescents facing a parental illness: Low HRQoL; High HRQoL; Moderate HRQoL with High Social Acceptance; High Well-Being, High Moods and Emotions, and High Social Support and Peers. These clusters differed according to demographics, the type of parental illness, illness perception, academic performance, and level of caring activities. The Low HRQoL cluster showed especially low academic performance and high level of caring activities. This multidimensional HRQoL evaluation thus helps to foreground the diversity of these adolescents' experiences in order to better address their needs.

Assessing caring activities in French adolescents and young adults: Relevance of the Multidimension Assessment of Caring Activities for Young Carers (MACA-YC18).

BACKGROUND: Young carers (YC) and young adult carers (YAC) have become of interest in research and practice. The 18-item Multidimensional Assessment of Caring Activities for Young Carers (MACA-YC18) was developed for identifying the extent and nature of caring activities across six domains: domestic chores, household management, financial/practical help, personal care, emotional care, and sibling care. The aim of this research was to investigate the psychometric properties of the French version of the MACA-YC18. METHODS: Two quantitative studies were conducted in a general population among adolescents and young adults. The sample was composed of 2688 adolescents (Mage = 16.08; SDage = 0.98; 60.60% girls) in Study 1 and 1192 young adults (Mage = 20.52; SDage = 1.89; 78.27% girls) in Study 2. The psychometric properties were examined via construct validity through internal consistencies, confirmatory factorial analysis, and invariance measurement regarding: gender (girls vs. boys), having a sick/disabled relative (having vs. not), relative's type of illness/disability (physical illness vs. mental illness vs. other illnesses/disabilities), providing support to a sick/disabled relative (providing vs. not), and living arrangement (with family vs. not). RESULTS: In both studies, internal consistencies were in line with those reported in the literature, the 6-factor structure was confirmed, and strict invariances were highlighted. CONCLUSIONS: Results show that the French version of the MACA-YC18 has good psychometric properties regarding construct validity not only among adolescents but also among young adults. This instrument appears to be a relevant screening tool for identifying and characterizing young carers in the general population.

Benefit finding moderates the relationship between young carer experiences and mental well-being.

OBJECTIVE: Research has shown that some young carers face many negative consequences because of their caring experiences, whereas others seem to be unaffected or even report greater well-being. To understand how caring for a family member or close friend can have these different effects, this study compared benefit finding between young carers and their peers and examined its association with mental well-being. DESIGN: We recruited 2,525 adolescents aged 15-21 years (59.6% female, Mage = 17.73) through the Swiss education system. They were asked to complete measures of caring experiences, benefit finding, and mental well-being. Young carers (n = 1,137), including adolescents who currently or formerly provided care, were compared to adolescents without caring experiences (n = 1,388). RESULTS: Young carers had a higher level of overall benefit finding than non-carer peers, and their profiles of benefit finding differed regarding the dimensions of growth and empathy. The association between caring experiences and mental well-being was weaker when benefit finding was higher. Benefit finding dimensions were differently associated with mental well-being among young carers. CONCLUSIONS: This study shows that caring is associated with benefit finding and suggests that engaging with past stressors in a positive way may promote resilience in young carers.

Pathways to Mental Well-Being in Young Carers: The Role of Benefit Finding, Coping, Helplessness, and Caring Tasks.

Although prior research has shown that young carers may perceive benefits from their challenging situation, it is unclear how and when benefit finding leads to better mental health. This study examines pathways through which benefit finding may influence mental well-being. Self-reported data were obtained from 601 adolescents aged 15-21 (Mage = 17.87, 71.9% female) who provided care for a close person with physical or mental health problems. Benefit finding was associated with better mental well-being directly as well as indirectly via better coping and lower helplessness. These findings were similar across young carers with different caring task profiles, except for a few differences regarding social/emotional and instrumental care. The study suggests that benefit finding could promote coping skills and mental well-being in adolescent young carers with implications for the design of future research on interventions with young carers.

The awareness, visibility and support for young carers across Europe: a Delphi study.

BACKGROUND: Across Europe, young carers (YCs) and their need for support receive limited attention in the media, policy and empirical research, even though, similar to adult carers, they also provide care to ill family members. The Delphi study, a qualitative research methodology, which provides the focus for this article, had the overall aim of exploring existing successful strategies to support YCs. Compared to YCs, even less is known about adolescent young carers (AYCs), a group that is in a critical life transition phase. The study forms part of an EU Horizon 2020 funded research project on AYCs aged 15-17 years old. METHODS: A two-round Delphi study was conducted with 66 experts on YCs from 10 European countries. Topics included: (i) visibility and awareness-raising of YCs at local, regional, and national levels, (ii) current interventions to support YCs, and (iii) future strategies to support YCs. RESULTS: Experts reported a lack of visibility and awareness about YCs in general, and AYCs in particular. Although awareness is slowly increasing in most countries, with the UK ranked highest, experts acknowledged that it remains challenging to identify YCs in many countries. Furthermore, the level and type of support available for YCs differs, with most countries mainly offering support on a local level. Diverse views were expressed regarding future strategies to support YCs. Experts highlighted the importance of specific legislation to formalise the rights of YCs, and the issue of whether young people should be safeguarded from caregiving or if this should be considered part of regular family life. They also emphasised the relevance of available integrated support services for YCs, including schools, family, health and social care. CONCLUSIONS: In most European countries, there is a lack of awareness and visibility on YCs. Identification of YCs is a crucial first step and there is need for a common definition of YCs, together with greater opportunities for young adults to identify themselves as YCs.

Positive and Negative Impacts of Caring among Adolescents Caring for Grandparents. Results from an Online Survey in Six European Countries and Implications for Future Research, Policy and Practice.

Although up to 8% of European youngsters carry out high-intensity care for a family member, adolescent young carers (AYCs), especially those caring for their grandparents (GrPs), remain an under-researched group. This study aimed at addressing the current knowledge gap by carrying out an online survey in Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the United Kingdom. The analysis included a final sample of 817 AYCs aged 15-17 years old. AYCs of grandparents (GrPs) were compared to AYCs of other care recipients (OCRs), in order to identify any difference in positive and negative caregiving outcomes and exposure factors between the two groups. Linear or logistic regression models were built, and multivariate analyses were repeated, including a fixed effect on the country variable. AYCs of GrPs experienced more positive caregiving outcomes than AYCs of OCRs across all six countries. Being female or non-binary, and having a migration background, were associated with more negative outcomes, regardless of the relationship with the care recipient. Further research on intergenerational caregiving outcomes is recommended for shaping measures and policies, which preserve the intergenerational emotional bonds, whilst protecting AYCs from inappropriate responsibilities, undermining their mental health and well-being.

Caring in mind? Professionals' awareness of young carers and young adult carers in Switzerland.

Findings from international research emphasis the need of these young people to be identified and recognised. Therefore, a nationwide quantitative study of professionals' awareness was conducted in the Swiss context. Data were collected from professionals working in education, healthcare and social services. The study examined professionals' familiarity with the terms used to describe young people with caring responsibilities; their ability to identify the population in their professional context; their perception of the relevance of the issue; their ability to support them; and their own training needs. Potential study participants were contacted via email. Data were collected using an online survey, which was open for 14 weeks during the period of September to December 2016. Survey data from 2,311 professionals, who reported being regularly in contact with young people with caring responsibilities in their occupational context, were included for analysis. Of all terms presented in the survey, young carer (YC) was the term most familiar to all professionals. Among healthcare and education sector, the percentage of professionals familiar with this term was higher than that among professionals from social services. Professionals from social services were the most likely to consider the issue relevant to their work, those from education were the least likely. Professionals who were familiar with the terms describing YC were more likely to consider the issue relevant to their work. Study results showed that more than half of the respondents had not identified young people with caring responsibilities, and that the ability of participants to identify YC was related to their occupational sector. The perceived ability to support YC was related to their reported ability to recognise them. In order to enable professionals to support YC, raising awareness, providing training for professionals and a national network of existing organisations should be well considered.

Practicality of Acute and Transitional Care and its consequences in the era of SwissDRG: a focus group study.

BACKGROUND: Switzerland recently introduced Acute and Transitional Care (ATC) as a new financing option and a preventive measure to mitigate potential side effects of Swiss Diagnosis Related Group (SwissDRG). The goal of ATC was to support patients who after acute treatment at a hospital require temporary increased professional care. However, evidence is lacking as to the practicality of ATC. METHODS: Using qualitative focus group methodology, we sought to understand the implementation and use of ATC. A purposive sample of forty-two professionals from five Swiss cantons participated in this study. We used a descriptive thematic approach to analyse the data. RESULTS: Our findings first reveal that ATC's implementation differs in the five cantons (i.e. federal states). In two cantons, only ambulatory variant of ATC is used; in one canton only stationary ATC has been created, and two cantons had both ambulatory and stationary ATC but preferred the latter. Second, there are intrinsic practical challenges associated with ATC, which include physicians' lack of familiarity with ATC and its regulatory limitations. Finally, participants felt that due to shorter hospital stays because of SwissDRG, premature discharge of patients with complex care needs to stationary ATC takes place. This development does not fit the nursing home concept of care tailored to long-term patients. CONCLUSION: This empirical study underscores that there is a strong need to improve ATC so that it is uniformly implemented throughout the country and its application is streamlined. In light of the newness of ATC as well as SwissDRG, their impact on the quality of care received by patients is yet to be fully understood. Empirical evidence is necessary to improve these two measures.

Factors associated with post-acute discharge location after hospital stay: a cross-sectional study from a Swiss hospital.

BACKGROUND: In 2012, Switzerland introduced the diagnosis-related group hospital payment system. Fearing that vulnerable patients may be discharged early, Acute and Transitional Care (ATC) was introduced to address the nursing care of patients who no longer needed an acute hospital stay. ATC is more costly for patients when compared to other discharge options like rehabilitation while providing less rehabilitative services. This study investigates factors associated with the place of discharge for patients in need of care. METHODS: Data was collected from 660 medical records of inpatients 50 years and older of the municipal hospital Triemli in Zurich, Switzerland. We used stepwise logistic regression to identify factors associated with their discharge into ATC or rehabilitation. RESULTS: Older patients with higher Delirium Observation Scale (DOS), lack of supplementary health insurance, resuscitation order and a lower social network were more likely to be discharged into ATC than rehabilitation. CONCLUSIONS: The association of supplementary health insurance and social network with discharge into ATC or rehabilitation is problematic because patients that are already vulnerable from a financial and social perspective are potentially discharged into a more costly and less rehabilitative post-acute care facility.

Young carers and young adult carers in Switzerland: Caring roles, ways into care and the meaning of communication.

Although there is already general recognition of the fact that many relatives provide unpaid care for family members, there is still little awareness that children, adolescents and young adults under 25 also provide such care. Until recently, the situation of young carers and young adult carers, as those young persons are referred to in international research, has not been in the focus of professionals, research and the public in Switzerland. Between September 2015 and October 2016, 30 interviews in seven cantons were conducted with 16 young carers aged 10-17 and 14 young adult carers aged 18-25. The interviews were recorded, transcribed and analysed following a grounded theory approach. This paper now presents the first qualitative data on Swiss young carers and young adult carers. It explores their sociodemographic backgrounds, the nature and intensity of caring tasks they carry out, their pathways into caring as well as the role of communication with family members, extended family, professionals and peers. Our findings provide a first insight in the lives of young carers and young adult carers in Switzerland and illustrate, as well, the challenges they face.

"You don't look for it"-A study of Swiss professionals' awareness of young carers and their support needs.

While political and public interest in providing support for family carers is growing, so called young carers and young adult carers-young persons under the ages of 18 and 25 respectively-mostly remain unrecognised. Yet, this vulnerable group is in need of special attention and support from professionals in order to get along with the situation of an ill family member and the caring duties they perform. This paper presents the results from a focus group study on the level of awareness among professionals from healthcare, education and social services concerning the topic of caring children, adolescents and young adults; and on the practice tools they consider necessary and helpful in order to support young carers and young adult carers. Twenty-seven professionals from the German- and French-speaking parts of Switzerland participated in five focus groups. The focus groups were recorded and transcribed verbatim, and the transcripts were analysed using qualitative content analysis. Our findings show that the professionals have a low level of awareness of the issue of young carers and young adult carers and also highlight the professionals' willingness to engage with the subject. The results also show that professionals consider that practice tools (such as standardised questionnaires and check lists) could be important devices in providing support for young carers and young adult carers. These tools could be helpful in identifying this group, enabling them to identify themselves as such, and would ensure that they received appropriate support.

Study protocol: young carers and young adult carers in Switzerland.

BACKGROUND: In Switzerland, the issue of young carers and young adult carers - young people under the age of 18 and 24 respectively, who take on significant or substantial caring tasks and levels of responsibility that would usually be associated with an adult - has not been researched before. The number of these younger carers is unknown, as is the extent and kind of their caring activities and the outcomes for their health, well-being, psycho-social development, education, transitions to adulthood, future employability and economic participation. METHODS: The project is comprised of three stages: 1. A national Swiss-wide online survey to examine awareness of the issue of younger carers amongst professional populations in the education, health and social services sectors; 2. An online survey of 4800 Swiss pupils in schools using standardised instruments to identify the proportion and characteristics of pupils who are carers; and 3. Semi-structured interviews with 20 families comprising family members with care needs and younger carers, to consolidate and validate the other stages of the study; and to hear directly from care-dependent family members and younger carers about their experiences of the issues identified in the surveys and in previous published research. DISCUSSION: The needs of younger carers and their ill and disabled family members in Switzerland have not been systematically investigated. This will be the first study in the country to investigate these issues and to develop evidence-based recommendations for policy and practice, drawing also on international research. The present study therefore fills an important national and international research gap. It will collect important data on the awareness, extent, kind and impact of caring amongst children and young people in Switzerland, and cross-link these findings with robust evidence from other countries. The study will reveal (a) the extent of awareness of the issue of young carers amongst medical, social, health, educational, and other groups in Switzerland; (b) the proportion and number of young carers amongst a normative child population, and what these young carers 'do' in terms of their caring roles; and