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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

Author

Listed:
  • Francesco Barbabella

    (Department of Health and Caring Sciences, Linnaeus University, 39182 Kalmar, Sweden
    The Swedish Family Care Competence Centre (NKA), Strömgatan 13, 39232 Kalmar, Sweden)

  • Lennart Magnusson

    (Department of Health and Caring Sciences, Linnaeus University, 39182 Kalmar, Sweden
    The Swedish Family Care Competence Centre (NKA), Strömgatan 13, 39232 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
    Department of Psychology, University of Bologna, Viale Berti Pichat 5, 40127 Bologna, 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
    School of Education and Social Work, University of Sussex, Falmer, Brighton BN1 9RG, UK)

  • 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
    The Swedish Family Care Competence Centre (NKA), Strömgatan 13, 39232 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
    The author (Barbara D’Amen) carried out the project activities and contributed to the writing of the article as a researcher at the Centre for Socio-Economic Research on Ageing, National Institute of Health and Science on Ageing (IRCCS INRCA). Since 15 January 2023, she has been a researcher at the Italian National Institute of Statistics (ISTAT), Via Cesare Balbo 39, 00184 Rome, 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
    Department of Health, Kalaidos University of Applied Sciences, Gloriastrasse 18a, 8006 Zurich, Switzerland)

  • Daniel Phelps

    (Department of Health, Kalaidos University of Applied Sciences, Gloriastrasse 18a, 8006 Zurich, Switzerland
    Faculty of Health and Well-being, University of Winchester, Winchester SO22 4NR, UK)

  • 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
    Careum, Pestalozzistrasse 3, 8032 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
    Faculty of Health and Education, Manchester Metropolitan University, Manchester M15 6BX, UK)

  • Elizabeth Hanson

    (Department of Health and Caring Sciences, Linnaeus University, 39182 Kalmar, Sweden
    The Swedish Family Care Competence Centre (NKA), Strömgatan 13, 39232 Kalmar, Sweden)

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.

Suggested Citation

  • 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, 2023. "Recruitment of Adolescent Young Carers to a Psychosocial Support Intervention Study in Six European Countries: Lessons Learned from the ME-WE Project," IJERPH, MDPI, vol. 20(6), pages 1-20, March.
    • Handle: RePEc:gam:jijerp:v:20:y:2023:i:6:p:5074-:d:1096353
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    References listed on IDEAS

    as
    1. Daniel Phelps, 2017. "The Voices of Young Carers in Policy and Practice," Social Inclusion, Cogitatio Press, vol. 5(3), pages 113-121.
    2. Giulia Casu & Valentina Hlebec & Licia Boccaletti & Irena Bolko & Alessandra Manattini & Elizabeth Hanson, 2021. "Promoting Mental Health and Well-Being among Adolescent Young Carers in Europe: A Randomized Controlled Trial Protocol," IJERPH, MDPI, vol. 18(4), pages 1-23, February.
    3. Ed Janes, 2022. "Young Carer Perception of Control: Results of a Phenomenology with a Mixed Sample of Young Carers Accessing Support and Unknown to Services," IJERPH, MDPI, vol. 19(10), pages 1-16, May.
    4. Sara Santini & Barbara D’Amen & Marco Socci & Mirko Di Rosa & Elizabeth Hanson & Valentina Hlebec, 2022. "Difficulties and Needs of Adolescent Young Caregivers of Grandparents in Italy and Slovenia: A Concurrent Mixed-Methods Study," IJERPH, MDPI, vol. 19(5), pages 1-20, February.
    5. Hinke M. van der Werf & Marie Louise A. Luttik & Alice de Boer & Petrie F. Roodbol & Wolter Paans, 2022. "Growing up with a Chronically Ill Family Member—The Impact on and Support Needs of Young Adult Carers: A Scoping Review," IJERPH, MDPI, vol. 19(2), pages 1-16, January.
    6. Aurélie Untas & Christel Vioulac & Pauline Justin & Agnes Leu & Géraldine Dorard, 2022. "Professionals’ Awareness of Young Carers in Schools: Results from a French Survey," IJERPH, MDPI, vol. 19(21), pages 1-19, October.
    7. Elizabeth Hanson & Francesco Barbabella & Lennart Magnusson & Rosita Brolin & Miriam Svensson & Stecy Yghemonos & Valentina Hlebec & Irena Bolko & Licia Boccaletti & Giulia Casu & Renske Hoefman & Ali, 2022. "Research and Innovation for and with Adolescent Young Carers to Influence Policy and Practice—The European Union Funded “ME-WE” Project," IJERPH, MDPI, vol. 19(16), pages 1-33, August.
    8. Marianne Saragosa & Melissa Frew & Shoshana Hahn-Goldberg & Ani Orchanian-Cheff & Howard Abrams & Karen Okrainec, 2022. "The Young Carers’ Journey: A Systematic Review and Meta Ethnography," IJERPH, MDPI, vol. 19(10), pages 1-25, May.
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    Cited by:

    1. Ana Meireles & Sofia Marques & Sara Faria & Joana Correia Lopes & Ana Ribas Teixeira & Bruno Alves & Saul Becker, 2023. "Being a Young Carer in Portugal: The Impact of Caring on Adolescents’ Life Satisfaction," IJERPH, MDPI, vol. 20(21), pages 1-19, November.

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