2.7. Recruitment
RECRUITMENT
The recruitment of AYCs was carried out between April 2019 and September 2020. All countries employed cluster-targeted recruitment methods aimed to reach a convenience sample. The efforts were invested to overcome the known difficulties to reach and involve AYCs, especially in countries where there is no formal recognition of their role. Thus, convenience approaches were designed in each country, based on the specific context (e.g., availability and willingness to support the study by schools, health and social services and non-profit organisations), by the leading research partner organisation. The recruitment of AYCs was performed in either schools only (in Slovenia, Sweden and Switzerland) or geographical areas (in Italy, the Netherlands and UK) by also partnering with, in addition to schools, community-based service organisations (e.g., community health and social service agencies and organisations, youth welfare agencies, carer-related or disease-specific non-governmental organisations (NGOs) and young carers charities). In Sweden, a large school campaign was conducted. In Slovenia and Switzerland, recruitment was expanded from initially targeting schools to dormitories and campuses, respectively, as well as to a wider range of additional stakeholders (i.e., from the health and the social sectors, including NGOs). In Italy, the majority of participants were identified and recruited with the mediation of a public or private health or social care service and through condition-specific associations and NGOs working with young persons. The UK differed from the other ME-WE partner countries because they have a widespread network of young carers support services already in place. Thus, recruitment efforts in the UK focused firstly on recruiting appropriate young carers projects to the ME-WE study and secondly on recruiting AYCs to take part in the study. A variety of recruitment methods were adopted by the research teams in each country. Among these, the collaboration with local stakeholders (e.g., school staff, professionals from health and social sectors) was fundamental in order to promote the participation in the study among young people [A screening interview (either in person or via telephone) against eligibility criteria was conducted by the research team in every country. During the screening, the AYCs were given the opportunity to ask questions regarding the project. In the UK, AYCs and their parents/legal guardians took part in a screening call with the ME-WE group member and the UK Clinical Trial Manager. Sweden and Switzerland endeavoured to turn to the randomisation of individual participants, since their recruitment method did not pose a risk for spill-over effects. As outlined above, due to COVID-related interruptions and a slowing down of the recruitment of trial participants, Sweden and Switzerland launched national social media recruitment campaigns. In Sweden, the recruitment was supplemented with advertising via short films on social media and further information through the project’s website. In Switzerland, recruitment was also expanded with the development of a social media strategy, through blogs, websites, newsletters and social media, including the creation of a new Instagram account and using paid promotions. Following the COVID-19 pandemic outbreak, recruitment and enrolment were performed remotely in the six countries. Screening interviews to assess the eligibility of participants were carried out exclusively by telephone or video-conferencing applications (e.g., Zoom, Microsoft Teams). Written parental (or guardian) consent and self-consent to be involved in the study were collected by email or recorded (by video-conferencing applications).