IDEAS home Printed from https://ideas.repec.org/a/gam/jijerp/v20y2023i6p5074-d1096353.html
   My bibliography  Save this article

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
    as

    Download full text from publisher

    File URL: https://www.mdpi.com/1660-4601/20/6/5074/pdf
    Download Restriction: no
    File URL: https://www.mdpi.com/1660-4601/20/6/5074/
    Download Restriction: no
    ---><---

    References listed on IDEAS

    as
    1. 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.
    2. Daniel Phelps, 2017. "The Voices of Young Carers in Policy and Practice," Social Inclusion, Cogitatio Press, vol. 5(3), pages 113-121.
    3. 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.
    4. 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.
    5. 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.
    6. 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.
    7. 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.
    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.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    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.

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Lauren Donnan & Janet S. Gaffney & Toni Bruce, 2023. "Voices from the Margins: Aotearoa/New Zealand Young Carers Reflect on Their Experiences," IJERPH, MDPI, vol. 20(15), pages 1-20, August.
    2. Elena Guggiari & Marianne Fatton & Saul Becker & Feylyn Lewis & Giulia Casu & Renske Hoefman & Elizabeth Hanson & Sara Santini & Licia Boccaletti & Henk Herman Nap & Valentina Hlebec & Alexandra Wirth, 2023. "Visibility as a Key Dimension to Better Health-Related Quality of Life and Mental Health: Results of the European Union Funded “ME-WE” Online Survey Study on Adolescent Young Carers in Switzerland," IJERPH, MDPI, vol. 20(5), pages 1-17, February.
    3. 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.
    4. Araviinthansai Subramaniam & Kalyani Kirtikar Mehta, 2024. "Exploring the Lived Experiences of Caregiving for Older Family Members by Young Caregivers in Singapore: Transition, Trials, and Tribulations," IJERPH, MDPI, vol. 21(2), pages 1-27, February.
    5. Elizabeth Olson & Leiha Edmonds, 2023. "“Caregiving Youth” and the Patchwork History of Recognition in the United States," IJERPH, MDPI, vol. 20(20), pages 1-15, October.
    6. Bente Storm Mowatt Haugland & Mari Hysing & Børge Sivertsen, 2023. "Does It Matter Who You Provide Care for? Mental Health and Life Satisfaction in Young Adult Carers Associated with Type of Relationship and Illness Category—A National Student Survey," IJERPH, MDPI, vol. 20(5), pages 1-16, February.
    7. Giulia Landi & Kenneth I. Pakenham & Silvana Grandi & Eliana Tossani, 2022. "Young Adult Carers during the Pandemic: The Effects of Parental Illness and Other Ill Family Members on COVID-19-Related and General Mental Health Outcomes," IJERPH, MDPI, vol. 19(6), pages 1-18, March.
    8. Russell, Helen & Smyth, Emer, 2024. "Caregiving among Young Adults in Ireland," Research Series, Economic and Social Research Institute (ESRI), number RS168.
    9. Giulia Landi & Kenneth I. Pakenham & Roberto Cattivelli & Silvana Grandi & Eliana Tossani, 2022. "Caregiving Responsibilities and Mental Health Outcomes in Young Adult Carers during the COVID-19 Pandemic: A Longitudinal Study," IJERPH, MDPI, vol. 19(22), pages 1-17, November.
    10. Simon, Mark (Симон, Марк) & Malakhov, Vladimir (Малахов, Владимир) & Letnyakov, Denis (Летняков, Денис) & Motin, A (Мотин, А.), 2018. "Prevention Mechanisms of Inter-Ethnic Tensions in the Context of Migratory Population Growth [Механизмы Предотвращения Межэтнической Напряженности В Условиях Миграционного Прироста Населения]," Working Papers 041824, Russian Presidential Academy of National Economy and Public Administration.
    11. Jo Aldridge, 2017. "Introduction to the Issue: “Promoting Children’s Participation in Research, Policy and Practice”," Social Inclusion, Cogitatio Press, vol. 5(3), pages 89-92.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:gam:jijerp:v:20:y:2023:i:6:p:5074-:d:1096353. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: MDPI Indexing Manager (email available below). General contact details of provider: https://www.mdpi.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.