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

Francesco Barbabella (), Lennart Magnusson, Licia Boccaletti, Giulia Casu, Valentina Hlebec, Irena Bolko, Feylyn Lewis, Renske Hoefman, Rosita Brolin, Sara Santini, Marco Socci, Barbara D’Amen, Yvonne de Jong, Tamara Bouwman, Nynke de Jong, Agnes Leu, Daniel Phelps, Elena Guggiari, Alexandra Wirth, Vicky Morgan, Saul Becker and Elizabeth Hanson
Additional contact information
Francesco Barbabella: Department of Health and Caring Sciences, Linnaeus University, 39182 Kalmar, Sweden
Lennart Magnusson: Department of Health and Caring Sciences, Linnaeus University, 39182 Kalmar, Sweden
Licia Boccaletti: Anziani e Non Solo Società Cooperativa Sociale, Via Lenin 55, 41012 Carpi, Italy
Giulia Casu: Anziani e Non Solo Società Cooperativa Sociale, Via Lenin 55, 41012 Carpi, Italy
Valentina Hlebec: Faculty of Social Sciences, University of Ljubljana, Kardeljeva pl. 5, 1000 Ljubljana, Slovenia
Irena Bolko: Faculty of Social Sciences, University of Ljubljana, Kardeljeva pl. 5, 1000 Ljubljana, Slovenia
Feylyn Lewis: School of Nursing, Vanderbilt University, Godchaux Hall 179, 461 21st Ave S, Nashville, TN 37240, USA
Renske Hoefman: The Netherlands Institute for Social Research (SCP), Postbus 16164, 2500 BD The Hague, The Netherlands
Rosita Brolin: Department of Health and Caring Sciences, Linnaeus University, 39182 Kalmar, Sweden
Sara Santini: Centre for Socio-Economic Research on Aging, IRCCS INRCA-National Institute of Health and Science on Aging, Via Santa Margherita 5, 60124 Ancona, Italy
Marco Socci: Centre for Socio-Economic Research on Aging, IRCCS INRCA-National Institute of Health and Science on Aging, Via Santa Margherita 5, 60124 Ancona, Italy
Barbara D’Amen: Centre for Socio-Economic Research on Aging, IRCCS INRCA-National Institute of Health and Science on Aging, Via Santa Margherita 5, 60124 Ancona, Italy
Yvonne de Jong: Vilans—The National Centre of Expertise for Long-Term Care in The Netherlands, Churchilllaan 11, 3527 GV Utrecht, The Netherlands
Tamara Bouwman: Vilans—The National Centre of Expertise for Long-Term Care in The Netherlands, Churchilllaan 11, 3527 GV Utrecht, The Netherlands
Nynke de Jong: Vilans—The National Centre of Expertise for Long-Term Care in The Netherlands, Churchilllaan 11, 3527 GV Utrecht, The Netherlands
Agnes Leu: Institute for Biomedical Ethics, Medical Faculty, University of Basel, Bernoullistrasse 28, 4056 Basel, Switzerland
Daniel Phelps: Department of Health, Kalaidos University of Applied Sciences, Gloriastrasse 18a, 8006 Zurich, Switzerland
Elena Guggiari: Department of Health, Kalaidos University of Applied Sciences, Gloriastrasse 18a, 8006 Zurich, Switzerland
Alexandra Wirth: Department of Health, Kalaidos University of Applied Sciences, Gloriastrasse 18a, 8006 Zurich, Switzerland
Vicky Morgan: Carers Trust, 32–36 Loman Street, London SE1 OEH, UK
Saul Becker: School of Education and Social Work, University of Sussex, Falmer, Brighton BN1 9RG, UK
Elizabeth Hanson: Department of Health and Caring Sciences, Linnaeus University, 39182 Kalmar, Sweden

IJERPH, 2023, vol. 20, issue 6, 1-20

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.

Keywords: young carers; adolescent young carers; recruitment; co-design; COVID-19; psychosocial support; cluster-randomised controlled trial; intervention study (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2023
References: View references in EconPapers View complete reference list from CitEc
Citations: View citations in EconPapers (1)

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