Children's Perceptions and Experiences of Their Involvement in Their Parents' Mental Health Care - A Qualitative Literature Review.

This systematic review aims to synthesise the research on children's perceptions and experiences of their involvement in a parent's mental health care. After an extensive search and quality appraisal, 22 articles remained and were included in the review. The results show that children-although resourceful and with good intentions-frequently felt excluded. They hungered for information and felt their questions were abandoned. They also felt caught in a tumultuous life situation and struggled for support. Finally, they expressed the need to be seen and ultimately did not feel involved in their parent's mental health care.

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.

Residents' perceptions of the most positive and negative aspects of the housing situation for people with psychiatric disabilities.

The major aim of the present study was to explore what people with psychiatric disabilities, living in two different types of housing, consider to be the best and the worst in their housing situation. A secondary aim was to explore to what extent additional questions to a questionnaire with a free-response format can provide complementary information to the previous knowledge in the field. The content analysis revealed that the physical attributes were of great significance for the residents in ordinary housing, while both psychosocial aspects and physical attributes were important for those living in supported housing. When providing good housing solutions for people with psychiatric disabilities, attention needs to be given to these aspects by politicians, policymakers as well as by nursing staff.

Satisfaction with housing and housing support for people with psychiatric disabilities.

The aim of this study was to investigate the degree of satisfaction with housing and housing support for people with psychiatric disabilities in Sweden. A total of 370 residents, in supported housing and in ordinary housing with housing support, completed a new questionnaire and reported a high degree of overall satisfaction, but many of them wanted to move somewhere else. Differences were found between the two different types of housing concerning satisfaction with housing support, social life and available choices. Security and privacy, as well as other's influence on the choice of residential area and dwelling proved to be important predictors for satisfaction.

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.

Validity and reliability of a Swedish questionnaire for assessing satisfaction with housing and housing support for persons with psychiatric disabilities.

The aim of this study was to investigate the reliability and validity of a questionnaire for studying satisfaction with housing and housing support for people with psychiatric disabilities. Most items were gathered from English language questionnaires. These were translated and adapted to a Swedish context and items concerning housing support were added. Two studies were conducted. The first, a test-retest reliability analysis, was performed in a pilot study with 53 participants; in the second study, which had 370 participants, a five factor solution with good internal consistency emerged. Further development of the questionnaire is discussed.

"It's not just the residents who need to be motivated for activity": a qualitative study of the perspectives of staff on providing activity support for people with psychiatric disabilities in supported housing in Sweden.

Background: The goals for staff in Supported Housing for people with psychiatric disabilities include helping to develop the residents' independence and self-confidence in activities. However, staff have expressed frustration about providing this type of support when motivating residents to engage in meaningful activities and also about the difficulty in finding suitable levels of independence within a housing setting with limitations. Objective: The aim is to explore the views and experiences of housing staff in Supported Housing on how they can stimulate and support engagement in activities for people with psychiatric disabilities. Methods: Twenty-six members of staff from 20 supported housing units in 10 municipalities in Sweden were interviewed in five focus groups. A semi-structured interview guide was used, and the transcribed material was analyzed using qualitative content analysis. Results: Three main categories emerged from the analysis: Multi-faceted factors influencing the staff's provision of activity support, Staff's approach for supporting activities, and Staff's struggles to develop their work. Obstacles to participating in activities in the community were identified. Many contrasting factors were found, such as spontaneous or structured activities and individual or group activities, which affected the staff's ability to motivate to activity. Conclusion: A broad approach encompassing in-house training including a focus on values, recruitment policies, staff supervision and interventions focusing on both residents and staff are ways to support staff in motivating residents toward being more active within Supported Housing.

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.

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.

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.

Striving for meaning-Life in supported housing for people with psychiatric disabilities.

The aim of this study was to develop a grounded theory about people with psychiatric disabilities, living in supported housing. Interviews as well as observations during the interviews were analyzed together with secondary analyses of quantitative and qualitative material from previous studies. Being deprived of self-determination emerged as the main concern for residents in supported housing and striving for meaning emerged as the pattern of behavior through which this group resolves their main concern. Striving for meaning involves living in the present, striving for self-determination, strengthening self-esteem, emotional processing and resting from the present. The strategies facilitate each other and are used singly, together simultaneously, or alternately. If they are successful, a meaning in the present is perceived. If all the strategies fail repeatedly, escaping from the present is used in order to deal with being deprived of self-determination. The implications of the findings suggest prioritizing a reduction of the institutional nature of the social and physical environment, and to support the residents' self-determination.