Patients' Perspectives on the Use of a Newly Developed "Patients' Guide for Doctor's Visit": DocVISITguide

During doctor's visits, fundamental decisions regarding a patient's diagnosis and therapy are taken. However, consultations often take place within a limited time frame and are characterized by an asymmetric interaction. Therefore, patients' questions can remain unanswered and concerns unspoken. A "Patients' Guide for Doctor's Visit" (DocVISITguide) was developed to prepare patients for their visits, supporting them to take an active role in the communication and leave the consultation well-informed. This paper describes the development of the DocVISITguide and its first small-scale evaluation based on a sequential explanatory mixed methods design from the patients' perspective. For this purpose, a small sample of patients completed a pre- and post-questionnaire, and two in-depth interviews were conducted. Most participants found the DocVISITguide easy to understand. The guide helped them to take a closer look at their own health situation and be better prepared for the visit. More than three-quarters (82%) of the participants would probably use the guide again, and all (100%) would recommend it to family and friends. However, some patients felt unsure about using the guide within the consultation and showing it to their physician. To counteract this uncertainty, physicians should be actively involved in the use of such guides in the future

Secondary SOLID Tumors after Allogeneic STEM CELL Transplantation: A CROSS-Sectional Evaluation in 260 Adults at 1-Year Follow-up

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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

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