Relief for Younger People in Need of Care and their Informal Carers

<< Background >>The starting point for the project was the work of the partner organisations, which have been committed to the integration and participation of marginalised groups for many years. The partners focus on topics such as ageing and care. In this context, it became apparent that there is a serious gap in care provision for younger people in need of care (aged 18-65).In this context, the need for care primarily refers to a need for care acquired in adulthood (e.g. due to accidents or early dementia). There are not enough age-appropriate care and support services, relatives are not provided with sufficient relevant information and learning materials, organisations do not have suitable services, and policy makers know too little about this target group and their relatives.Those in need of care and their relatives, as informal carers, are often faced with special challenges. They may have children to care for, a job to attend to, or personal interests and needs that could differ from those of people in geriatric care. For many people, the illness strikes unexpectedly at a stage in life when most people would not expect it. TThere is a great need here on a personal and structural level, which we wanted to address with this project. << Objectives >>The needs analysis and the above summary show that the problem exists at different levels and that there are different needs and requirements. The project therefore had the following three objectives.• To give young people in need of care and their carers a voice and involve them in measures tailored to their wishes and needs• To offer these target groups a learning tool on measures and opportunities to improve their quality of life• To raise awareness among decision-makers at political and association level of urgently needed intervention measuresOur goal was to promote inclusion and diversity in society and to strengthen self-help opportunities in situations where people are particularly vulnerable. The aim was to sustainably improve the resilience and living situation of young people in need of care and their informal carers by supporting them with an educational offer and information. It was important to share the perspectives of other informal caregivers and to design an offer based on these needs and insights.<< Implementation >>The project focused on creating learning materials. Four outputs (compendium, learning platform, recommendations for policymakers and professional caregivers) were produced as part of the project. People were involved and activities were carried out as part of this process. A central idea of the project was to highlight the perspectives of informal carers. An important activity at the beginning of the project was to conduct interviews with informal caregivers in all partner countries, in which they were asked about their everyday experiences and needs. Based on these interviews, the compendium and learning platform were created and further content was designed. The co-creation elements served to ensure quality and to guarantee that the offerings were tailored to the target group. Another activity was test workshops, also with those affected. The idea here was to test and comment on the content created on the basis of the interviews. These workshops were thus part of quality assurance and were intended to provide information about the authenticity and usability of the content. In addition, presentations were given as part of dissemination activities and European round tables were organised as a platform for expert exchange.<< Results >>Three learning outputs were developed as part of the project, with the learning platform, featuring numerous sub-units and different language versions, being the most complex:WP2 – Compendium: This is a compilation of perspectives and impressions based on the interviews. To this end, the interviews were analysed and anonymised examples were included in the compendium. The idea was to provide various facts on the topic and practical examples in order to raise awareness. The aim is to convey information, impart practical knowledge and offer inspiration.WP3 – Learning platform: The mobility of families with people in need of care is often limited and they have few time resources. To this end, a learning platform was developed that focuses on informal learning and is designed to provide individual access to content, allowing learners to set their own priorities.The platform is based on the needs identified previously.WP4 – Recommendations for policy makers and professional carers: The recommendations are aimed at decision-makers and are intended to promote positive measures against discrimination. Various levels of the project are to be addressed.