Promoting Mental Health and Well-Being among Adolescent Young Carers in Europe: A Randomized Controlled Trial Protocol

Giulia Casu, Valentina Hlebec, Licia Boccaletti, Irena Bolko, Alessandra Manattini, Elizabeth Hanson, Giulia Casu, Valentina Hlebec, Licia Boccaletti, Irena Bolko, Alessandra Manattini, Elizabeth Hanson

Abstract

It is estimated that 4-8% of youth in Europe carry out substantial care for a family member or significant other. To prevent adverse psychosocial outcomes in young carers (YCs), primary prevention resilience building interventions have been recommended. We describe the study protocol of an international randomized controlled trial (RCT) of an innovative group intervention designed to promote the mental health and well-being of adolescent YCs (AYCs) aged 15-17. The RCT will be conducted in six European countries in the context of the Horizon 2020 European funded research and innovation project "Psychosocial support for promoting mental health and well-being among adolescent young caregivers in Europe" ("ME-WE"). The ME-WE intervention is based on Hayes and Ciarrochi's psychoeducational model for adolescents and will consist of seven 2-h sessions in a group format, aimed to help AYCs build psychological flexibility and live according to their values. The control group will be a waitlist. Primary and secondary outcomes and control variables will be measured at baseline (T0), post-intervention (T1) and 3 months follow-up (T2). The COVID-19 pandemic has made amendments necessary to the original study protocol methodology, which we describe in detail. This study will contribute to building an evidence-based manualized program that educators and health and social care professionals can use to support AYCs in their transition to adulthood. From a research perspective, the outcomes of this study will contribute to evidence-based practices in primary prevention of psychosocial difficulties in AYCs and will gather novel knowledge on the effectiveness of Hayes and Ciarrochi's model for use with middle adolescents with caring responsibilities. The trial has been preregistered (registration number: NCT04114864).

Keywords: acceptance and commitment therapy; adolescent young carers; cross-national study; mental health; primary prevention intervention; psychoeducational model; randomized controlled trial; resilience; study protocol; well-being.

Conflict of interest statement

The authors declare no conflict of interest. The funder had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript, or in the decision to publish the results.

Figures

Figure 1
Figure 1
Consolidated standard of reporting trials (CONSORT) flow diagram for the original study protocol.

References

    1. Becker S. Young carers. In: Davies M., editor. The Blackwell Encyclopedia of Social Work. 3rd ed. Blackwell; Oxford, UK: 2000. p. 378.
    1. Metzing-Blau S., Schnepp W. Young carers in Germany: To live on as normal as possible—A grounded theory study. BMC Nurs. 2008;7:15. doi: 10.1186/1472-6955-7-15.
    1. Leu A., Frech M., Wepf H., Sempik J., Joseph S., Helbling L., Moser U., Becker S., Jung C. Counting Young Carers in Switzerland—A Study of Prevalence. Child. Soc. 2019;33:53–67. doi: 10.1111/chso.12296.
    1. Aldridge J. Where are we now? Twenty-five years of research, policy and practice on young carers. Crit. Soc. Policy. 2017;38:155–165. doi: 10.1177/0261018317724525.
    1. Brimblecombe N., Knapp M., King D., Stevens M., Farias J.C. The high cost of unpaid care by young people:health and economic impacts of providing unpaid care. BMC Public Health. 2020;20:1–11. doi: 10.1186/s12889-020-09166-7.
    1. Järkestig-Berggren U., Bergman A.-S., Eriksson M., Priebe G. Young carers in Sweden—A pilot study of care activities, view of caring, and psychological well-being. Child Fam. Soc. Work. 2018;24:292–300. doi: 10.1111/cfs.12614.
    1. Kallander E.K., Weimand B., Ruud T., Becker S., Van Roy B., Hanssen-Bauer K. Outcomes for children who care for a parent with a severe illness or substance abuse. Child Youth Serv. 2018;39:228–249. doi: 10.1080/0145935X.2018.1491302.
    1. Nagl-Cupal M., Daniel M., Koller M.M., Mayer H. Prevalence and effects of caregiving on children. J. Adv. Nurs. 2014;70:2314–2325. doi: 10.1111/jan.12388.
    1. Roling M., Falkson S., Hellmers C., Metzing S. Early caregiving experiences and the impact on transition into adulthood and further life: A literature review. Scand. J. Caring Sci. 2019;34:539–551. doi: 10.1111/scs.12757.
    1. Cohen C., Greene J., Toyinbo P., Siskowsky R.N. Impact of family caregiving by youth on their psychological well-being: A latent trait analysis. J. Behav. Health Serv. Res. 2012;39:245–256. doi: 10.1007/s11414-011-9264-9.
    1. Orel N.A., Dupuy P., Wright J. Auxiliary caregivers: The perception of grandchildren within multigenerational caregiving environments. J. Intergener. Relatsh. 2004;2:67–92. doi: 10.1300/J194v02n02_05.
    1. Kim-Cohen J., Caspi A., Moffitt T.E., Harrington H., Milne B.J., Poulton R. Prior juvenile diagnoses in adults with mental disorder: Developmental follow-back of a prospective-longitudinal cohort. Arch. Gen. Psychiatry. 2003;60:709–717. doi: 10.1001/archpsyc.60.7.709.
    1. Santini S., Socci M., D’Amen B., Di Rosa M., Casu G., Hlebec V., Lewis F., Leu A., Hoefman R., Brolin R., et al. Positive and Negative Impacts of Caring among Adolescents Caring for Grandparents. Results from an Online Survey in Six European Countries and Implications for Future Research, Policy and Practice. Int. J. Environ. Res. Public Health. 2020;17:6593. doi: 10.3390/ijerph17186593.
    1. Msc E.K.K., Weimand B.M., Hanssen-Bauer K., Van Roy B., Ruud T., Hanssen-Bauer K. Factors associated with quality of life for children affected by parental illness or substance abuse. Scand. J. Caring Sci. 2020 doi: 10.1111/scs.12868.
    1. Haugland B.S.M., Hysing M., Sivertsen B. The Burden of Care: A National Survey on the Prevalence, Demographic Characteristics and Health Problems among Young Adult Carers Attending Higher Education in Norway. Front. Psychol. 2020;10:2859. doi: 10.3389/fpsyg.2019.02859.
    1. Douglas F., Ejebu O.Z., Garcia A., MacKenzie F., Whybrow S., McKenzie L., Ludbrook A., Dowler E. The Nature and Extent of Food Poverty in Scotland. NHS Health Scotland; Glasgow, UK: 2015.
    1. Pourmotabbed A., Moradi S., Babaei A., Ghavami A., Mohammadi H., Jalili C., E Symonds M., Miraghajani M. Food insecurity and mental health: A systematic review and meta-analysis. Public Health Nutr. 2020;23:1778–1790. doi: 10.1017/S136898001900435X.
    1. Hamilton M.G., Adamson E. Bounded agency in young carers’ life-course stage domains and transitions. J. Youth Stud. 2013;16:101–117. doi: 10.1080/13676261.2012.710743.
    1. Hamilton M., Cass B. Capturing the centrality of age and life-course stage in the provision of unpaid care. J. Sociol. 2016;53:79–93. doi: 10.1177/1440783315625117.
    1. Lloyd K. Happiness and Well-Being of Young Carers: Extent, Nature and Correlates of Caring Among 10 and 11 Year Old School Children. J. Happiness Stud. 2013;14:67–80. doi: 10.1007/s10902-011-9316-0.
    1. Hamilton M., Redmond G. Are Young Carers Less Engaged in School than Non-Carers? Evidence from a Representative Australian Study. Child Indic. Res. 2019;13:33–49. doi: 10.1007/s12187-019-09647-1.
    1. Kavanaugh M.S. Children and Adolescents Providing Care to a Parent with Huntington’s Disease: Disease Symptoms, Caregiving Tasks and Young Carer Well-Being. Child Youth Care Forum. 2014;43:675–690. doi: 10.1007/s10566-014-9258-x.
    1. Lakman Y., Chalmers H., Sexton C. Young carers’ educational experiences and support: A roadmap for the development of school policies to foster their academic success. Alta. J. Educ. Res. 2017;63:63–74.
    1. Bolas H., Van Wersch A., Flynn D. The well-being of young people who care for a dependent relative: An interpretative phenomenological analysis. Psychol. Health. 2007;22:829–850. doi: 10.1080/14768320601020154.
    1. Kaiser S., Schulze G.C. Between Inclusion and Participation: Young Carers Who Are Absent from School. J. Cogn. Educ. Psychol. 2015;14:314–328. doi: 10.1891/1945-8959.14.3.314.
    1. Hall M., Sikes P. ‘It’s just limboland’: Parental dementia and young people’s life courses. Sociol. Rev. 2020;68:242–259. doi: 10.1177/0038026119874280.
    1. Gough G., Gulliford A. Resilience amongst young carers: Investigating protective factors and benefit-finding as perceived by young carers. Educ. Psychol. Pr. 2020;36:149–169. doi: 10.1080/02667363.2019.1710469.
    1. Matzka M., Nagl-Cupal M. Psychosocial resources contributing to resilience in Austrian young carers—A study using photo novella. Res. Nurs. Health. 2020;43:629–639. doi: 10.1002/nur.22085.
    1. Becker S., Becker F. Service Needs and Delivery Following the Onset of Caring amongst Children and Young Adults: Evidence Based Review. Commission for Rural Communities; Cheltenham, UK: 2008. [(accessed on 29 January 2021)]. Report. Available online:
    1. McGibbon M. The experiences of young carers in Northern Ireland: Negotiating pathways to a positive sense of self-identity—Narratives of resilience, risk and identity. In: Moran L., Reilly K., Brady B., editors. Narrating Childhood with Children and Young People. Palgrave Macmillan; Cham, Switzerland: 2020. pp. 63–86.
    1. Głąbska D., Guzek D., Groele B., Gutkowska K. Fruit and vegetables intake in adolescents and mental health: A systematic review. Rocz. Państw. Zakł. Hig. 2020;71:15–25. doi: 10.32394/rpzh.2019.0097.
    1. Mohanty I., Niyonsenga T. A longitudinal analysis of mental and general health status of informal carers in Australia. BMC Public Health. 2019;19:1436. doi: 10.1186/s12889-019-7816-8.
    1. Cunningham L.C., Shochet I.M., Smith C.L., Wurfl A. A qualitative evaluation of an innovative resilience-building camp for young carers. Child Fam. Soc. Work. 2017;22:700–710. doi: 10.1111/cfs.12286.
    1. Acton J., Carter B. The Impact of Immersive Outdoor Activities in Local Woodlands on Young Carers Emotional Literacy and Well-Being. Compr. Child Adolesc. Nurs. 2016;39:94–106. doi: 10.3109/01460862.2015.1115156.
    1. Assaf R.R., Der Springe J.A., Siskowski C., Ludwig D.A., Mathew M.S., Belkowitz J. Participation Rates and Perceptions of Caregiving Youth Providing Home Health Care. J. Community Health. 2016;41:326–333. doi: 10.1007/s10900-015-0100-7.
    1. Gettings S., Franco F., Santosh P.J. Facilitating support groups for siblings of children with neurodevelopmental disorders using audio-conferencing: A longitudinal feasibility study. Child Adolesc. Psychiatry Ment. Health. 2015;9:1–15. doi: 10.1186/s13034-015-0041-z.
    1. Schlarmann J.G., Metzing S., Schoppmann S., Schnepp W. Germany’s First Young Carers Project’s Impact on the Children: Relieving the Entire Family. A Qualitative Evaluation. Open Nurs. J. 2011;5:86–94. doi: 10.2174/1874434601105010086.
    1. Heyman A., Heyman B. ‘The sooner you can change their life course the better’: The time-framing of risks in relationship to being a young carer. Health Risk Soc. 2013;15:561–579. doi: 10.1080/13698575.2013.830080.
    1. Purcal C., Hamilton M., Thomson C., Cass B. From Assistance to Prevention: Categorizing Young Carer Support Services in Australia, and International Implications. Soc. Policy Adm. 2011;46:788–806. doi: 10.1111/j.1467-9515.2011.00816.x.
    1. Stamatopoulos V. Supporting young carers: A qualitative review of young carer services in Canada. Int. J. Adolesc. Youth. 2014;21:178–194. doi: 10.1080/02673843.2015.1061568.
    1. Fraser E., Pakenham K.I. Evaluation of a Resilience-Based Intervention for Children of Parents with Mental Illness. Aust. N. Zealand J. Psychiatry. 2008;42:1041–1050. doi: 10.1080/00048670802512065.
    1. Dray J., Bowman J., Campbell E., Freund M., Wolfenden L., Hodder R.K., McElwaine K., Tremain D., Bartlem K., Bailey J., et al. Systematic Review of Universal Resilience-Focused Interventions Targeting Child and Adolescent Mental Health in the School Setting. J. Am. Acad. Child Adolesc. Psychiatry. 2017;56:813–824. doi: 10.1016/j.jaac.2017.07.780.
    1. Merry S.N., E Hetrick S., Cox G.R., Brudevold-Iversen T., Bir J.J., McDowell H. Cochrane Review: Psychological and educational interventions for preventing depression in children and adolescents. Evid. Based Child Health A Cochrane Rev. J. 2012;7:1409–1685. doi: 10.1002/ebch.1867.
    1. Taylor R.D., Oberle E., Durlak J.A., Weissberg R.P. Promoting Positive Youth Development Through School-Based Social and Emotional Learning Interventions: A Meta-Analysis of Follow-Up Effects. Child Dev. 2017;88:1156–1171. doi: 10.1111/cdev.12864.
    1. Manwell L.A., Barbic S.P., Roberts K., Durisko Z., Lee C., Ware E., McKenzie K. What is mental health? Evidence towards a new definition from a mixed methods multidisciplinary international survey. BMJ Open. 2015;5:e007079. doi: 10.1136/bmjopen-2014-007079.
    1. Galderisi S., Heinz A., Kastrup M., Beezhold J., Sartorius N. Toward a new definition of mental health. World Psychiatry. 2015;14:231–233. doi: 10.1002/wps.20231.
    1. Gilmore K.J., Meersand P. Normal Child and Adolescent Development: A Psychodynamic Primer. American Psychiatric Publishing; Washington, DC, USA: 2014. pp. 203–248.
    1. Ogden T., Hagen K.A. Adolescent Mental Health: Prevention and Intervention. 2nd ed. Routledge; New York, NY, USA: 2018.
    1. Hayes L., Ciarrochi J. The Thriving Adolescent: Using Acceptance and Commitment Therapy and Positive Psychology to Help Teens Manage Emotions, Achieve Goals, and Build Positive Connections. New Harbinger Publications; Oakland, CA, USA: 2015.
    1. Hayes S.C., Strosahl K.D., Wilson K.G. Acceptance and Commitment Therapy: An Experiential Approach to Behavior Change. Guilford; New York, NY, USA: 1999.
    1. Ernst M.M., Mellon M.W. Acceptance and commitment therapy (ACT) to foster resilience in pediatric chronic illness. In: DeMichelis C., Ferrari M., editors. Child and Adolescent Resilience within Medical Contexts. Springer; Cham, Switzerland: 2016. pp. 193–207.
    1. Waugh C.E., Thompson R.J., Gotlib I.H. Flexible emotional responsiveness in trait resilience. Emotion. 2011;11:1059–1067. doi: 10.1037/a0021786.
    1. Bjorgvinsdottir K., Halldorsdottir S. Silent, invisible and unacknowledged: Experiences of young caregivers of single parents diagnosed with multiple sclerosis. Scand. J. Caring Sci. 2014;28:38–48. doi: 10.1111/scs.12030.
    1. Fang S., Ding D. A meta-analysis of the efficacy of acceptance and commitment therapy for children. J. Context. Behav. Sci. 2020;15:225–234. doi: 10.1016/j.jcbs.2020.01.007.
    1. Halliburton A.E., Cooper L.D. Applications and adaptations of Acceptance and Commitment Therapy (ACT) for adolescents. J. Context. Behav. Sci. 2015;4:1–11. doi: 10.1016/j.jcbs.2015.01.002.
    1. Kallapiran K., Koo S., Kirubakaran R., Hancock K. Review: Effectiveness of mindfulness in improving mental health symptoms of children and adolescents: A meta-analysis. Child Adolesc. Ment. Health. 2015;20:182–194. doi: 10.1111/camh.12113.
    1. Swain J., Hancock K., Dixon A., Bowman J. Acceptance and Commitment Therapy for children: A systematic review of intervention studies. J. Context. Behav. Sci. 2015;4:73–85. doi: 10.1016/j.jcbs.2015.02.001.
    1. Hayes L., Boyd C.P., Sewell J. Acceptance and Commitment Therapy for the Treatment of Adolescent Depression: A Pilot Study in a Psychiatric Outpatient Setting. Mindfulness. 2011;2:86–94. doi: 10.1007/s12671-011-0046-5.
    1. Livheim F., Hayes L., Ghaderi A., Magnusdottir T., Högfeldt A., Rowse J., Turner S., Hayes S.C., Tengström A. The effectiveness of acceptance and commitment therapy for adolescent mental health: Swedish and Australian pilot outcomes. J. Child Fam. Stud. 2015;24:1016–1030. doi: 10.1007/s10826-014-9912-9.
    1. Marino F., Crimi I., Carrozza C., Failla C., Sfrazzetto S.T., Chilà P., Bianco M., Arnao A.A., Tartarisco G., Cavallaro A., et al. A Novel Third Wave Contextual Approach of Positive Behavior Support in School for Adolescent at High Psychosocial Risk: Rationale, Feasibility, and First Pilot Outcomes. Front. Psychol. 2019;10:2635. doi: 10.3389/fpsyg.2019.02635.
    1. Fayers P.M., Jordhùy M.S., Kaasa S. Cluster-randomized trials. Palliat. Med. 2002;16:69–70. doi: 10.1191/0269216302pm503xx.
    1. Campbell M.K., Piaggio G., Elbourne D.R., Altman D.G. Consort 2010 statement: Extension to cluster randomised trials. BMJ. 2012;345:e5661. doi: 10.1136/bmj.e5661.
    1. Chan A.-W., Tetzlaff J.M., Altman D.G., Laupacis A., Gøtzsche P.C., Krleža-Jeriíc K., Hróbjartsson A., Mann H., Dickersin K., Berlin J.A., et al. SPIRIT 2013 Statement: Defining Standard Protocol Items for Clinical Trials. Ann. Intern. Med. 2013;158:200–207. doi: 10.7326/0003-4819-158-3-201302050-00583.
    1. Hanson E., Magnusson L., Sennemark M.E. Blended Learning Networks Supported by Information and Communication Technology: An Intervention for Knowledge Transformation Within Family Care of Older People. Gerontologist. 2011;51:561–570. doi: 10.1093/geront/gnr015.
    1. Neff K. Self-Compassion: An Alternative Conceptualization of a Healthy Attitude Toward Oneself. Self-Identity. 2003;2:85–101. doi: 10.1080/15298860309032.
    1. Andersson G., Cuijpers P., Carlbring P., Riper H., Hedman E. Guided Internet-based vs. face-to-face cognitive behavior therapy for psychiatric and somatic disorders: A systematic review and meta-analysis. World Psychiatry. 2014;13:288–295. doi: 10.1002/wps.20151.
    1. Carlbring P., Andersson G., Cuijpers P., Riper H., Hedman-Lagerlöf E. Internet-based vs. face-to-face cognitive behavior therapy for psychiatric and somatic disorders: An updated systematic review and meta-analysis. Cogn. Behav. Ther. 2018;47:1–18. doi: 10.1080/16506073.2017.1401115.
    1. Eurostat Individuals Who Have Basic or Above Basic Overall Digital Skills by Sex. [(accessed on 4 December 2020)]; Available online: .
    1. Clay D., Connors C., Day N., Gkiza M., Aldridge J. The Lives of Young Carers in England. Qualitative Report to Department for Education; Department for Education; London, UK: 2016.
    1. DNA-V—The Youth Model of Acceptance, Mindfulness, and Positive Psychology. [(accessed on 4 December 2020)]; Available online:
    1. Harkness J.A., Schoua-Glusberg A. Questionnaires in translation. ZUMA-Nachr. Spezial. 1998;3:87–127.
    1. Greco L.A., Lambert W., Baer R.A. Psychological inflexibility in childhood and adolescence: Development and evaluation of the Avoidance and Fusion Questionnaire for Youth. Psychol. Assess. 2008;20:93–102. doi: 10.1037/1040-3590.20.2.93.
    1. Schweiger M., Ristallo A., Oppo A., Pergolizzi F., Presti G., Moderato P. Ragazzi in lotta con emozioni e pensieri: La validazione della versione italiana dellʼAvoidance and Fusion Questionnaire for Youth (I-AFQ-Y) Psicoter. Cogn. Comport. 2017;23:141–162.
    1. Muris P., Meesters C., Herings A., Jansen M., Vossen C., Kersten P. Inflexible Youngsters: Psychological and Psychopathological Correlates of the Avoidance and Fusion Questionnaire for Youths in Nonclinical Dutch Adolescents. Mindfulness. 2017;8:1381–1392. doi: 10.1007/s12671-017-0714-1.
    1. Cederberg J.T., Weineland S., Dahl J., Ljungman G. A preliminary validation of the Swedish short version of the Avoidance and Fusion Questionnaire for Youth (AFQ-Y8) for children and adolescents with cancer. J. Context. Behav. Sci. 2018;10:103–107. doi: 10.1016/j.jcbs.2018.09.004.
    1. Livheim F., Tengström A., Bond F.W., Andersson G., Dahl J., Rosendahl I. Psychometric properties of the Avoidance and Fusion Questionnaire for Youth: A psychological measure of psychological inflexibility in youth. J. Contextual Behav. Sci. 2016;5:103–110. doi: 10.1016/j.jcbs.2016.04.001.
    1. Greco L.A., Baer R.A., Smith G.T. Assessing mindfulness in children and adolescents: Development and validation of the Child and Adolescent Mindfulness Measure (CAMM) Psychol. Assess. 2011;23:606–614. doi: 10.1037/a0022819.
    1. Chiesi F., Dellagiulia A., Lionetti F., Bianchi G., Primi C. Using Item Response Theory to Explore the Psychometric Properties of the Italian Version of the Child and Adolescent Mindfulness Measure (CAMM) Mindfulness. 2016;8:351–360. doi: 10.1007/s12671-016-0604-y.
    1. Ristallo A., Schweiger M., Oppo A., Pergolizzi F., Presti G., Moderato P. Misurare la mindfulness in età evolutiva: Proprietà psicometriche e struttura fattoriale della versione italiana della Child and Adolescent Mindfulness Measure (I-CAMM) Psicoter. Cogn. Comport. 2016;22:297–315.
    1. Saggino A., Bartoccini A., Sergi M.R., Romanelli R., Macchia A., Tommasi M. Assessing Mindfulness on Samples of Italian Children and Adolescents: The Validation of the Italian Version of the Child and Adolescent Mindfulness Measure. Mindfulness. 2017;8:1364–1372. doi: 10.1007/s12671-017-0712-3.
    1. De Bruin E.I., Zijlstra B.J.H., Bögels S.M. The Meaning of Mindfulness in Children and Adolescents: Further Validation of the Child and Adolescent Mindfulness Measure (CAMM) in Two Independent Samples from The Netherlands. Mindfulness. 2013;5:422–430. doi: 10.1007/s12671-013-0196-8.
    1. Bluth K., Campo R.A., Pruteanu-Malinici S., Reams A., Mullarkey M., Broderick P.C. A School-Based Mindfulness Pilot Study for Ethnically Diverse At-Risk Adolescents. Mindfulness. 2016;7:90–104. doi: 10.1007/s12671-014-0376-1.
    1. O’Dell S.M., Hosterman S.J., Hostutler C.A., Nordberg C., Klinger T., Petts R.A., Whitehead M.R., Faulkner S.A., Garcia A., Massura C.A. Retrospective cohort study of a novel acceptance and commitment therapy group intervention for adolescents implemented in integrated primary care. J. Context. Behav. Sci. 2020;16:109–118. doi: 10.1016/j.jcbs.2020.03.009.
    1. Petts R.A., Duenas J.A., Gaynor S.T. Acceptance and Commitment Therapy for adolescent depression: Application with a diverse and predominantly socioeconomically disadvantaged sample. J. Context. Behav. Sci. 2017;6:134–144. doi: 10.1016/j.jcbs.2017.02.006.
    1. Van Der Gucht K., Takano K., Van Broeck N., Raes F. A Mindfulness-Based Intervention for Economically Disadvantaged People: Effects on Symptoms of Stress, Anxiety, and Depression and on Cognitive Reactivity and Overgeneralization. Mindfulness. 2014;6:1042–1052. doi: 10.1007/s12671-014-0353-8.
    1. Smith B.W., Dalen J., Wiggins K., Tooley E.M., Christopher P., Bernard J. The brief resilience scale: Assessing the ability to bounce back. Int. J. Behav. Med. 2008;15:194–200. doi: 10.1080/10705500802222972.
    1. Cassidy T., Giles M., McLaughlin M. Benefit finding and resilience in child caregivers. Br. J. Health Psychol. 2013;19:606–618. doi: 10.1111/bjhp.12059.
    1. Soer R., Dijkstra M.W.M.C.S., Bieleman H.J., Stewart R.E., Reneman M.F., Oosterveld F.G.J., Schreurs K.M.G. Measurement properties and implications of the Brief Resilience Scale in healthy workers. J. Occup. Health. 2019;61:242–250. doi: 10.1002/1348-9585.12041.
    1. Chmitorz A., Wenzel M., Stieglitz R.-D., Kunzler A., Bagusat C., Helmreich I., Gerlicher A., Kampa M., Kubiak T., Kalisch R., et al. Population-based validation of a German version of the Brief Resilience Scale. PLoS ONE. 2018;13:e0192761. doi: 10.1371/journal.pone.0192761.
    1. Tennant R., Hiller L., Fishwick R., Platt S., Joseph S., Weich S., Parkinson J., Secker J., Stewart-Brown S. The Warwick-Edinburgh Mental Well-being Scale (WEMWBS): Development and UK validation. Health Qual. Life Outcomes. 2007;5:63. doi: 10.1186/1477-7525-5-63.
    1. Shannon S., Breslin G., Prentice G., Leavey G. Testing the factor structure of the Warwick-Edinburgh Mental Well-Being Scale in adolescents: A bi-factor modelling methodology. Psychiatry Res. 2020;293:113393. doi: 10.1016/j.psychres.2020.113393.
    1. Gremigni P., Stewart-Brown S. Una misura del benessere mentale: Validazione italiana della Warwick-Edinburgh Mental Well-Being Scale (WEMWBS) G. Ital. Psicol. 2011;38:485–508.
    1. Ikink J.G., Lamers S.M., Bolier J.M. Master’s Thesis. Universiteit Twente; Enschede, The Netherlands: Nov 12, 2012. De Warwick-Edinburgh Mental Well-Being Scale (WEMWBS) als Meetinstrument voor Mentaal Welbevinden in Nederland.
    1. Cilar L., Pajnkihar M., Štiglic G. Validation of the Warwick-Edinburgh Mental Well-being Scale among nursing students in Slovenia. J. Nurs. Manag. 2020;28:1335–1346. doi: 10.1111/jonm.13087.
    1. Haver A., Akerjordet K., Caputi P., Furunes T., Magee C. Measuring mental well-being: A validation of the Short Warwick–Edinburgh Mental Well-Being Scale in Norwegian and Swedish. Scand. J. Public Health. 2015;43:721–727. doi: 10.1177/1403494815588862.
    1. Lang G., Bachinger A. Validation of the German Warwick-Edinburgh Mental Well-Being Scale (WEMWBS) in a community-based sample of adults in Austria: A bi-factor modelling approach. J. Public Health. 2017;25:135–146. doi: 10.1007/s10389-016-0778-8.
    1. Haugland S., Wold B., Stevenson J., Aaroe L.E., Woynarowska B. Subjective health complaints in adolescence: A cross-national comparison of prevalence and dimensionality. Eur. J. Public Health. 2001;11:4–10. doi: 10.1093/eurpub/11.1.4.
    1. Health Behaviour in School-Aged Children (HBSC) [(accessed on 29 January 2021)]; Available online:
    1. Gariepy G., McKinnon B., Sentenac M., Elgar F.J. Validity and Reliability of a Brief Symptom Checklist to Measure Psychological Health in School-Aged Children. Child Indic. Res. 2016;9:471–484. doi: 10.1007/s12187-015-9326-2.
    1. Haugland S., Wold B. Subjective health complaints in adolescence—Reliability and validity of survey methods. J. Adolesc. 2001;24:611–624. doi: 10.1006/jado.2000.0393.
    1. Ravens-Sieberer U. The KIDSCREEN Questionnaires. Quality of Life Questionnaires for Children and Adolescents. Pabst Science Publisher; Lengerich, Germany: 2006.
    1. Ravens-Sieberer U., Erhart M., Rajmil L., Herdman M., Auquier P., Bruil J., Power M., Duer W., Abel T., Czemy L., et al. Reliability, construct and criterion validity of the KIDSCREEN-10 score: A short measure for children and adolescents’ well-being and health-related quality of life. Qual. Life Res. 2010;19:1487–1500. doi: 10.1007/s11136-010-9706-5.
    1. Kuhne F., Krattenmacher T., Bergelt C., Ernst J.C., Flechtner H.-H., Führer D., Herzog W., Klitzing K.V., Romer G., Möller B. Parental palliative cancer: Psychosocial adjustment and health-related quality of life in adolescents participating in a German family counselling service. BMC Palliat. Care. 2012;11:21. doi: 10.1186/1472-684X-11-21.
    1. KIDSCREEN-10 Index. [(accessed on 29 January 2021)]; Available online:
    1. Joseph S., Becker S., Becker F., Regel S. Assessment of caring and its effects in young people: Development of the Multidimensional Assessment of Caring Activities Checklist (MACA-YC18) and the Positive and Negative Outcomes of Caring Questionnaire (PANOC-YC20) for young carers. Child Care Health Dev. 2009;35:510–520. doi: 10.1111/j.1365-2214.2009.00959.x.
    1. Sarason I.G., Sarason B.R., Shearin E.N., Pierce G.R. A Brief Measure of Social Support: Practical and Theoretical Implications. J. Soc. Pers. Relatsh. 1987;4:497–510. doi: 10.1177/0265407587044007.
    1. Nyklíček I., Vingerhoets A. ‘Adaptive’ Psychosocial Factors in Relation to Home Blood Pressure: A Study in the General Population of Southern Netherlands. Int. J. Behav. Med. 2009;16:212–218. doi: 10.1007/s12529-008-9019-z.
    1. Esposito C.L., Clum G.A. Social support and problem-solving as moderators of the relationship between childhood abuse and suicidality: Applications to a delinquent population. J. Trauma. Stress. 2002;15:137–146. doi: 10.1023/A:1014860024980.
    1. Pakenham K.I., Cox S. Effects of Benefit Finding, Social Support and Caregiving on Youth Adjustment in a Parental Illness Context. J. Child Fam. Stud. 2018;27:2491–2506. doi: 10.1007/s10826-018-1088-2.
    1. Joseph S., Becker F., Becker S. Manual for Measures of Caring Activities and Outcomes for Children and Young People. The Princess Royal Trust for Carers; London, UK: 2009.
    1. Linnan L., Steckler A. Process Evaluation for Public Health Interventions and Research. Jossey-Bass; San Francisco, CA, USA: 2002.
    1. Swain J., Hancock K., Hainsworth C., Bowman J. Mechanisms of change: Exploratory outcomes from a randomised controlled trial of acceptance and commitment therapy for anxious adolescents. J. Context. Behav. Sci. 2015;4:56–67. doi: 10.1016/j.jcbs.2014.09.001.
    1. Daniel W.W. Biostatistics: A foundation for Analysis in the Health Sciences. 7th ed. Wiley; New York, NY, USA: 1999.
    1. Italian Institute of Statistics (ISTAT) La Conciliazione tra Lavoro e Famiglia Anno 2010. ISTAT; Rome, Italy: 2011. [(accessed on 4 December 2020)]. Available online: .
    1. Nordenfors M., Melander C., Daneback K. Unga Omsorgsgivare i Sverige. Nationellt Kompetenscentrum Anhöriga; Kalmar, Sweden: 2014.
    1. De Roos S.A., De Boer A.H., Bot S.M. Well-being and Need for Support of Adolescents with a Chronically Ill Family Member. J. Child Fam. Stud. 2016;26:405–415. doi: 10.1007/s10826-016-0574-7.
    1. Joseph S., Kendall C., Toher D., Sempik J., Holland J., Becker S., Holland J. Young carers in England: Findings from the 2018 BBC survey on the prevalence and nature of caring among young people. Child Care Health Dev. 2019;45:606–612. doi: 10.1111/cch.12674.
    1. Leu A., Becker S. A cross-national and comparative classification of in-country awareness and policy responses to ‘young carers’. J. Youth Stud. 2016;20:750–762. doi: 10.1080/13676261.2016.1260698.
    1. Montori V.M., Guyatt G.H. Intention-to-treat principle. Can. Med Assoc. J. 2001;165:1339–1341.
    1. Dreyhaupt J., Mayer B., Keis O., Öchsner W., Muche R. Cluster-randomized Studies in Educational Research: Principles and Methodological Aspects. GMS J. Med Educ. 2017;34:34.
    1. Field A.P., Wilcox R.R. Robust statistical methods: A primer for clinical psychology and experimental psychopathology researchers. Behav. Res. Ther. 2017;98:19–38. doi: 10.1016/j.brat.2017.05.013.
    1. Cohen J. Statistical Power Analysis for the Behavioral Sciences. 2nd ed. Lawrence Erlbaum Associates; Mahwah, NJ, USA: 1988.
    1. Schreier M. Qualitative content analysis. In: Flick U., editor. The SAGE Handbook of Qualitative Data Analysis. SAGE Publications Ltd.; Thousand Oaks, CA, USA: 2014. pp. 170–183.
    1. World Medical Association World Medical Association Declaration of Helsinki: Ethical principles for medical research involving human subjects. JAMA. 2013;310:2191–2194. doi: 10.1001/jama.2013.281053.
    1. Regulation G.D.P. Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation) Off. J. Eur. Union. 2016;59:294.
    1. Beane J.D., Dedhia P.H., Ejaz A., Contreras C.M., Cloyd J.M., Tsung A., Pawlik T.M. Conducting Clinical Trials in the Time of a Pandemic. Ann. Surg. 2020;272:219. doi: 10.1097/SLA.0000000000004114.
    1. Clay R.A. Conducting Research During the COVID-19 Pandemic: Advice from Psychological Researchers on Protecting Participants, Animals and Research Plans. [(accessed on 4 December 2020)]; Available online: .
    1. Nearchou F., Flinn C., Niland R., Subramaniam S.S., Hennessy E. Exploring the Impact of COVID-19 on Mental Health Outcomes in Children and Adolescents: A Systematic Review. Int. J. Environ. Res. Public Health. 2020;17:8479. doi: 10.3390/ijerph17228479.
    1. Schulz K.F., The CONSORT Group. Altman D.G., Moher D. CONSORT 2010 Statement: Updated guidelines for reporting parallel group randomised trials. BMC Med. 2010;8:18. doi: 10.1186/1741-7015-8-18.
    1. Nosek B.A., Beck E.D., Campbell L., Flake J.K., Hardwicke T.E., Mellor D.T., Veer A.E.V.T., Vazire S. Preregistration Is Hard, and Worthwhile. Trends Cogn. Sci. 2019;23:815–818. doi: 10.1016/j.tics.2019.07.009.
    1. van’t Veer A.E., Giner-Sorolla R. Pre-registration in social psychology—A discussion and suggested template. J. Exp. Soc. Psychol. 2016;67:2–12. doi: 10.1016/j.jesp.2016.03.004.
    1. Grist R., Porter J., Stallard P. Mental Health Mobile Apps for Preadolescents and Adolescents: A Systematic Review. J. Med Internet Res. 2017;19:e176. doi: 10.2196/jmir.7332.
    1. Patterson P., Pearce A., Slawitschka E. The initial development of an instrument to assess the psychosocial needs and unmet needs of young people who have a parent with cancer: Piloting the offspring cancer needs instrument (OCNI) Support. Care Cancer. 2010;19:1165–1174. doi: 10.1007/s00520-010-0933-7.
    1. Turner J.R. New Drug Development. Springer; New York, NY, USA: 2010. Designing clinical trials; pp. 47–67.
    1. Chen M., Zheng H., Li J., Huang D., Chen Q., Fang J. Non-pharmacological treatments for adult patients with functional constipation: A systematic review protocol. BMJ Open. 2014;4:e004982. doi: 10.1136/bmjopen-2014-004982.
    1. Gold C., Erkkilä J. Authors’ reply to “Refurbishing the masked RCT design for psychological interventions”. Br. J. Psychiatry. 2011;199:515–516. doi: 10.1192/bjp.199.6.515.
    1. Shifren K., Chong A. Health-Related Behaviors: A Study Among Former Young Caregivers. J. Adult Dev. 2012;19:111–121. doi: 10.1007/s10804-011-9140-0.
    1. Tatangelo G., McCabe M., MacLeod A., You E. “I just don’t focus on my needs.” The unmet health needs of partner and offspring caregivers of people with dementia: A qualitative study. Int. J. Nurs. Stud. 2018;77:8–14. doi: 10.1016/j.ijnurstu.2017.09.011.
    1. Johnson R.B., Onwuegbuzie A.J. Mixed Methods Research: A Research Paradigm Whose Time Has Come. Educ. Res. 2004;33:14–26. doi: 10.3102/0013189X033007014.
    1. Phillips D., Paul G., Fahy M., Dowling-Hetherington L., Kroll T., Moloney B., Duffy C., Fealy G., Lafferty A. The invisible workforce during the COVID-19 pandemic: Family carers at the frontline. HRB Open Res. 2020;3:24. doi: 10.12688/hrbopenres.13059.1.
    1. Carers Trust . My Future, My Feelings, My Family: How Coronavirus is Affecting Young Carers and Young Adult Carers, and what They Want You to do Next. Carers Trust; London, UK: 2020. [(accessed on 26 January 2021)]. Report. Available online: .
    1. Carers Trust Scotland . 2020 Vision: Hear Me, See Me, Support Me and Don’t Forget Me. Carers Trust Scotland; Glasgow, UK: 2020. [(accessed on 26 January 2021)]. Report. Available online: .

Source: PubMed

Sponsorer og samarbeidspartnere

Medisinsk tilstand

Legemiddelintervensjoner

3
Abonnere