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

Francesco Barbabella^{1

2}, Lennart Magnusson^{1

2}, Licia Boccaletti³, Giulia Casu^{3

4}, Valentina Hlebec⁵, Irena Bolko⁵, Feylyn Lewis^{6

7}, Renske Hoefman⁸, Rosita Brolin^{1

2}, Sara Santini⁹, Marco Socci⁹, Barbara D'Amen⁹, Yvonne de Jong¹⁰, Tamara Bouwman¹⁰, Nynke de Jong¹⁰, Agnes Leu^{11

12}, Daniel Phelps^{12

13}, Elena Guggiari¹², Alexandra Wirth^{12

14}, Vicky Morgan¹⁵, Saul Becker^{7

16}, Elizabeth Hanson^{1

2}

Affiliations

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.

PMID: 36981983
PMCID: PMC10049644
DOI: 10.3390/ijerph20065074

Randomized Controlled Trial

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

Francesco Barbabella et al. Int J Environ Res Public Health. 2023.

. 2023 Mar 14;20(6):5074.

doi: 10.3390/ijerph20065074.

Authors

Affiliations

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.

PMID: 36981983
PMCID: PMC10049644
DOI: 10.3390/ijerph20065074

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: COVID-19; adolescent young carers; cluster-randomised controlled trial; co-design; intervention study; psychosocial support; recruitment; young carers.

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Conflict of interest statement

The authors declare no conflict of interest.

Figures

**Figure 1**
CONSORT flow diagram for the original study protocol.

See this image and copyright information in PMC

References

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

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

Publication types

MeSH terms

LinkOut - more resources

Full Text Sources

Medical