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

The first cross-national study of adolescent young carers aged 15-17 in six European countries

This paper provides an original cross-national profile of adolescents who provide unpaid care to ill or disabled family members ('Adolescent Young Carers/AYCs') in six European countries. Utilizing an online survey, 2,099 AYCs were identified in Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the United Kingdom. This paper focuses on the impact of care onto their mental health well-being, physical health, and education, as well as their preferences for informal and formal support. These groundbreaking findings help promote a 'rights' approach for AYCs, which can serve as a critical driver for supportive policy creation on both a country-specific and Pan-European level

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

Alla barn är våra barn : om vägen till skolan för alla

Tanken om den inkluderande skolan har under en längre tid debatterats livligt av forskare från olika vetenskapliga discipliner. Det som i huvudsak har diskuterats är om, och i så fall varför, alla elever skall undervisas tillsammans eller inte. Märkligt nog har frågan om hur en inkluderande skola kan uppnås inte alls fått samma uppmärksamhet. Syftet med den här studien är att öka kunskapen om och förståelsen för hur ”den inkluderande skolan” kan skapas och hur personal, elever och föräldrar upplever en skola som strävar efter att bli fullständigt inkluderande. Studien bygger på kvalitativa, semistrukturerade intervjuer i en skola vars uttryckliga ambition är att bli en skola för alla elever. Tretton personer intervjuades: fem av skolans personal, fyra elever och fyra föräldrar. I resultatet framkommer det att begreppet ”en skola för alla” har olika betydelse för de intervjuade personerna. Eleverna beskriver ”en skola för alla” som en skola där alla trivs och mår bra. De använder ord som glädje och kamratskap, medan skolpersonalen i huvudsak relaterar till lärande, flexibilitet i undervisningsmetoder, olika former av stöd, storleken på klasserna, antal lärare i klassrummen samt tillgången till tekniska hjälpmedel.Researchers from different disciplines have debated the idea of inclusion in relation to the educational system for quite a while and the debate is still ongoing. The debate has mainly focused on why and whether all children should be educated together. Interestingly, the question of how inclusion could be achieved has not received the same attention. The purpose of this study is to increase the knowledge and understanding of how “the inclusive school” can be created and how a school that attempts to reach full inclusion is experiences by staff, pupils and parents. Qualitative, semi-structured interviews were conducted in a school that has the explicit aim of becoming a school that includes all children. Thirteen people were interviewed: five of the staff, four children and four parents. The results indicate that there are different views among the participants about “the inclusive school”. While the children appear to associate an inclusive school with a feeling of well being and mention words like happiness and friendship the staff mention more knowledge related concepts, such as learning, flexibility in teaching methods, support forms, class size, number of teachers in the classrooms and technical facilities

"Jag kan öppna fönstret när jag vill" : Boendesituationen för personer med psykisk funktionsnedsättning

Aim: The overall aim of this thesis was to explore and develop knowledge about the housing situation for people with psychiatric disabilities, based on the residents' perspectives. Methods: Three studies are based on a new Swedish questionnaire (SHPD) containing preconceived questions (Studies I-II) and two open-ended questions (Study III), while two studies are theory-generating (Studies IV-V). I - the psychometric properties of SHPD (ICC, descriptive statistics, factor analysis); II - the degree and predictors of housing satisfaction (descriptive statistics, logistical regression analysis); III - the best and worst in housing situation (qualitative content analysis); IV-V - Classic grounded theories about people with psychiatric disabilities, living in supported housing (IV) and in ordinary housing with housing support (V). Results: The results show good psychometric properties for SHPD, a generally high degree of housing satisfaction, and reveal security, privacy and choice as important predictors for satisfaction. Life in supported housing is shown to be characterized by constant togetherness, limited self-determination and violated integrity. Being deprived of self-determination emerged as the main concern for residents, who handle this through striving for meaning. Life in ordinary housing with housing support is shown to be characterized by independence, self-determination, loneliness, and sometimes lack of support. The impossible mission in everyday life emerged as the main concern for residents, who deal with this concern through mastering everyday life. The housing support staff are important facilitators in the process of mastering everyday life, and the continuity of housing support is a prerequisite for the process to succeed. Conclusions: The thesis contributes knowledge about the housing situation for people with psychiatric disabilities. The thesis raises awareness of a need for changes in housing support services towards housing forms and support that strengthen the residents' integrity and autonomy. The individuals' experiences need to be considered in planning and performance of housing support services, and security, privacy, choice, social support and continuity in housing support need to be prioritized

People talking and pencils scratching : – how pupils with neuropsychiatric diagnoses experience their time in school

Syftet med denna kvalitativa studie var att undersöka hur elever med neuropsykiatriska funktionshinder upplever tiden i grund- och gymnasieskolan. Mina frågeställningar handlade om i vilka sammanhang eleverna upplevde svårigheter kopplade till funktionshindren, på vilka sätt skolan visade förståelse för dessa svårigheter, hur skolan löste de problem som uppstod, vad skolan kunde ha gjort mer samt vilka starka sidor hos eleverna som var betydelsefulla i skolan. Jag intervjuade sex ungdomar i åldrarna 18 - 21 år. Jag använde mig av halvstrukturerade intervjuer. Resultatet, som analyserades ur ett sociokulturellt perspektiv, visade att eleverna upplevde svårigheter i skolan i flera olika sammanhang. Stora klasser och störande ljud i klassrummet förvärrade elevernas koncentrationssvårigheter. Projektarbeten utan strikta ramar och att tvingas redovisa inför klassen utgjorde ett stort hinder för flera av eleverna, medan undervisning på för låg nivå ledde till bristande studiemotivation. Under högstadietiden upplevde eleverna stress och svårigheter att hitta till klassrummen. Annat som medförde problem var bland annat fobier, sömnstörningar och att delta i skolidrotten. Utanförskap och mobbing i elevgrupperna var vanligt förekommande. Även lärare utsatte eleverna för kränkande särbehandling genom utpekande handlingar, skuldbeläggande och bestraffningar. Eleverna upplevde att de oftast möttes av oförståelse och okunskap från skolan. Endast enstaka lärare visade förståelse. Skolans åtgärder sattes oftast in väldigt sent och lösningarna på problemen blev därför kortvariga. Vissa åtgärder gjorde till och med större skada än nytta. Eleverna berättade om sina starka sidor och menade att dessa hjälpte dem genom åren i skolan. Av resultatet framgick att mindre klasser, men också kunskap hos lärarna och förmågan att samtala med eleverna och lyssna på dem, är viktiga medel för att kunna ta tag i problemen på ett tidigt stadium och skapa en skola för alla.The purpose of this qualitative study was to get knowledge of experiences of the years in compulsory school and upper secondary school by pupils with neuropsychiatric disabilities. The questions dealt with when and where in school the pupils had difficulties connected to their neuropsychiatric disabilities, in what way they were met with understanding for their difficulties, how the school solved the problems, what the school could have done more and what qualities the pupils possessed that helped in school. I interviewed six youngsters in the ages of 18 - 21. I used half-structured interviews. The result was analysed in a sociocultural perspective and showed that the pupils had difficulties in many ways at school. Big classes and noises in the classroom made their concentration difficulties worse. Projects in school without strict directions as well as appearances before the class became huge barriers for some of the pupils, while teaching at a too low level led to a lack of motivation. In upper level of compulsory school the pupils felt stress and difficulties in finding classrooms. Some other problems were phobias, insomnia and participating in school gymnastics. Bullying and exclusion from fellowship was usual. Even teachers were insulting the pupils by indicating them as outsiders, blaming them for their difficulties and punishing them. The pupils experienced that they were mostly met with misunderstanding and a lack of knowledge from the school. Just a few teachers were sympathetic. The school mostly took measures very late and the solutions therefore became short-lived. Some of the measures made the problems even worse. The pupils told me about their strong sides that helped them through school. The result showed that smaller classes as well as teachers knowledge and ability to converse and listen to the pupils are important instruments to be able to face the problems in an early phase and create a school for all kinds of minds

Mastering everyday life in ordinary housing for people with psychiatric disabilities

The aim of this study was to develop a classic grounded theory about people who have psychiatric disabilities and live in ordinary housing with housing support. Interviews and observations during the interviews were analyzed, and secondary analyses of data from previous studies were performed. The impossible mission in everyday life emerged as the main concern and mastering everyday life as the pattern of behavior through which they deal with this concern. Mastering everyday life can be seen as a process, which involves identifying, organizing, tackling, challenging and boosting. Before the process is started, avoiding is used to deal with the main concern. The community support worker, providing housing support, constitutes an important facilitator during the process, and the continuity of housing support is a prerequisite for the process to succeed. If the process mastering everyday life is interrupted by, for example, changes in housing support, the strategy of avoiding is used

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