Recruitment of Adolescent Young Carers to a Psychosocial Support Intervention Study in Six European Countries: Lessons Learned from the ME-WE Project

Author:

Barbabella Francesco12,Magnusson Lennart12,Boccaletti Licia3,Casu Giulia34ORCID,Hlebec Valentina5,Bolko Irena5,Lewis Feylyn67ORCID,Hoefman Renske8ORCID,Brolin Rosita12,Santini Sara9ORCID,Socci Marco9ORCID,D’Amen Barbara9ORCID,de Jong Yvonne10,Bouwman Tamara10,de Jong Nynke10,Leu Agnes1112ORCID,Phelps Daniel1213,Guggiari Elena12ORCID,Wirth Alexandra1214,Morgan Vicky15,Becker Saul716,Hanson Elizabeth12ORCID

Affiliation:

1. Department of Health and Caring Sciences, Linnaeus University, 39182 Kalmar, Sweden

2. The Swedish Family Care Competence Centre (NKA), Strömgatan 13, 39232 Kalmar, Sweden

3. Anziani e Non Solo Società Cooperativa Sociale, Via Lenin 55, 41012 Carpi, Italy

4. Department of Psychology, University of Bologna, Viale Berti Pichat 5, 40127 Bologna, Italy

5. Faculty of Social Sciences, University of Ljubljana, Kardeljeva pl. 5, 1000 Ljubljana, Slovenia

6. School of Nursing, Vanderbilt University, Godchaux Hall 179, 461 21st Ave S, Nashville, TN 37240, USA

7. School of Education and Social Work, University of Sussex, Falmer, Brighton BN1 9RG, UK

8. The Netherlands Institute for Social Research (SCP), Postbus 16164, 2500 BD The Hague, The Netherlands

9. Centre for Socio-Economic Research on Aging, IRCCS INRCA-National Institute of Health and Science on Aging, Via Santa Margherita 5, 60124 Ancona, Italy

10. Vilans—The National Centre of Expertise for Long-Term Care in The Netherlands, Churchilllaan 11, 3527 GV Utrecht, The Netherlands

11. Institute for Biomedical Ethics, Medical Faculty, University of Basel, Bernoullistrasse 28, 4056 Basel, Switzerland

12. Department of Health, Kalaidos University of Applied Sciences, Gloriastrasse 18a, 8006 Zurich, Switzerland

13. Faculty of Health and Well-being, University of Winchester, Winchester SO22 4NR, UK

14. Careum, Pestalozzistrasse 3, 8032 Zurich, Switzerland

15. Carers Trust, 32–36 Loman Street, London SE1 OEH, UK

16. Faculty of Health and Education, Manchester Metropolitan University, Manchester M15 6BX, UK

Abstract

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.

Funder

European Union

Publisher

MDPI AG

Subject

Health, Toxicology and Mutagenesis,Public Health, Environmental and Occupational Health

Reference53 articles.

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2. Brolin, R., Magnusson, L., and Hanson, E. (2022). Unga Omsorgsgivare. Svensk Kartläggning—Delstudie i det Europeiska ME-WE-Projektet (Young Carers. Swedish Mapping—Sub-Study in the European ME-WE Project), Nka. Report.

3. Istat (2022, October 25). Condizioni di Salute e Ricorso ai Servizi Sanitari in Italia e nell’Unione Europea—Indagine EHIS 2015. Report. Rome, Italy, 2017. Available online: https://www.istat.it/it/archivio/204655.

4. Bou, C. (2023). Factors Associated with the Quality-of-Life of Young Unpaid Carers: A Systematic Review of the Evidence from 2003 to 2019. Int. J. Environ. Res. Public Health, 20.

5. Counting Young Carers in Switzerland—A Study of Prevalence;Leu;Child. Soc.,2019

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