The Young Carers’ Journey: A Systematic Review and Meta Ethnography
Despite growing international interest, the caregiving body of literature lacks a recent understanding of young carers’ experiences and their contact with the health care system. We conducted a systematic review of qualitative studies to (1) synthesize more recent qualitative evidence on young carer...
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| Vydáno v: | International journal of environmental research and public health Ročník 19; číslo 10; s. 5826 |
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| Médium: | Journal Article |
| Jazyk: | angličtina |
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Switzerland
MDPI AG
10.05.2022
MDPI |
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| ISSN: | 1660-4601, 1661-7827, 1660-4601 |
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| Abstract | Despite growing international interest, the caregiving body of literature lacks a recent understanding of young carers’ experiences and their contact with the health care system. We conducted a systematic review of qualitative studies to (1) synthesize more recent qualitative evidence on young carers’ experience, and (2) to identify how these young carers interact with the health care system in their caregiving role. Using a meta-ethnographic synthesis, a total of 28 empirical studies met inclusion. Key findings helped inform an overarching framework of the experience of young carers as illustrated by a journey map. The journey map is a visual depiction of the stages these young carers go through when in a caregiving role framed by three themes: (1) encountering caregiving; (2) being a young caregiver, and (3) moving beyond caregiving. The caregiving experience is perceived by young people as challenging and complex, which could be improved with more informational navigation and emotional support. Understanding these experiences provides insight into gaps in health services and potential solutions that align with the stages outlined in the journey map. |
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| AbstractList | Despite growing international interest, the caregiving body of literature lacks a recent understanding of young carers’ experiences and their contact with the health care system. We conducted a systematic review of qualitative studies to (1) synthesize more recent qualitative evidence on young carers’ experience, and (2) to identify how these young carers interact with the health care system in their caregiving role. Using a meta-ethnographic synthesis, a total of 28 empirical studies met inclusion. Key findings helped inform an overarching framework of the experience of young carers as illustrated by a journey map. The journey map is a visual depiction of the stages these young carers go through when in a caregiving role framed by three themes: (1) encountering caregiving; (2) being a young caregiver, and (3) moving beyond caregiving. The caregiving experience is perceived by young people as challenging and complex, which could be improved with more informational navigation and emotional support. Understanding these experiences provides insight into gaps in health services and potential solutions that align with the stages outlined in the journey map. Despite growing international interest, the caregiving body of literature lacks a recent understanding of young carers' experiences and their contact with the health care system. We conducted a systematic review of qualitative studies to (1) synthesize more recent qualitative evidence on young carers' experience, and (2) to identify how these young carers interact with the health care system in their caregiving role. Using a meta-ethnographic synthesis, a total of 28 empirical studies met inclusion. Key findings helped inform an overarching framework of the experience of young carers as illustrated by a journey map. The journey map is a visual depiction of the stages these young carers go through when in a caregiving role framed by three themes: (1) encountering caregiving; (2) being a young caregiver, and (3) moving beyond caregiving. The caregiving experience is perceived by young people as challenging and complex, which could be improved with more informational navigation and emotional support. Understanding these experiences provides insight into gaps in health services and potential solutions that align with the stages outlined in the journey map.Despite growing international interest, the caregiving body of literature lacks a recent understanding of young carers' experiences and their contact with the health care system. We conducted a systematic review of qualitative studies to (1) synthesize more recent qualitative evidence on young carers' experience, and (2) to identify how these young carers interact with the health care system in their caregiving role. Using a meta-ethnographic synthesis, a total of 28 empirical studies met inclusion. Key findings helped inform an overarching framework of the experience of young carers as illustrated by a journey map. The journey map is a visual depiction of the stages these young carers go through when in a caregiving role framed by three themes: (1) encountering caregiving; (2) being a young caregiver, and (3) moving beyond caregiving. The caregiving experience is perceived by young people as challenging and complex, which could be improved with more informational navigation and emotional support. Understanding these experiences provides insight into gaps in health services and potential solutions that align with the stages outlined in the journey map. |
| Author | Frew, Melissa Saragosa, Marianne Hahn-Goldberg, Shoshana Orchanian-Cheff, Ani Okrainec, Karen Abrams, Howard |
| AuthorAffiliation | 4 The Institute for Education Research, University Health Network, Toronto, ON M4P 1E4, Canada 6 Department of Medicine, University of Toronto, Toronto, ON M5S 1A1, Canada 3 Health Sciences Library, University Health Network, Toronto, ON M5G 2C4, Canada; ani.orchanian-cheff@uhn.ca 5 General Internal Medicine, University Health Network, Toronto, ON M4P 1E4, Canada 1 OpenLab, University Health Network, Toronto, ON M4P 1E4, Canada; melissa.frew@uhn.ca (M.F.); shoshana.hahn-goldberg@uhn.ca (S.H.-G.); howard.abrams@uhn.ca (H.A.); karen.okrainec@uhn.ca (K.O.) 2 Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, Toronto, ON M5T 3M7, Canada |
| AuthorAffiliation_xml | – name: 2 Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, Toronto, ON M5T 3M7, Canada – name: 6 Department of Medicine, University of Toronto, Toronto, ON M5S 1A1, Canada – name: 1 OpenLab, University Health Network, Toronto, ON M4P 1E4, Canada; melissa.frew@uhn.ca (M.F.); shoshana.hahn-goldberg@uhn.ca (S.H.-G.); howard.abrams@uhn.ca (H.A.); karen.okrainec@uhn.ca (K.O.) – name: 3 Health Sciences Library, University Health Network, Toronto, ON M5G 2C4, Canada; ani.orchanian-cheff@uhn.ca – name: 5 General Internal Medicine, University Health Network, Toronto, ON M4P 1E4, Canada – name: 4 The Institute for Education Research, University Health Network, Toronto, ON M4P 1E4, Canada |
| Author_xml | – sequence: 1 givenname: Marianne orcidid: 0000-0002-9261-5971 surname: Saragosa fullname: Saragosa, Marianne – sequence: 2 givenname: Melissa surname: Frew fullname: Frew, Melissa – sequence: 3 givenname: Shoshana surname: Hahn-Goldberg fullname: Hahn-Goldberg, Shoshana – sequence: 4 givenname: Ani orcidid: 0000-0002-9943-2692 surname: Orchanian-Cheff fullname: Orchanian-Cheff, Ani – sequence: 5 givenname: Howard surname: Abrams fullname: Abrams, Howard – sequence: 6 givenname: Karen surname: Okrainec fullname: Okrainec, Karen |
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| Cites_doi | 10.1177/1049732319900498 10.1093/bjsw/bcy102 10.1080/13676261.2014.992329 10.1503/cmaj.121795 10.1111/j.1365-2648.2010.05275.x 10.1177/1074840709337126 10.12968/bjnn.2015.11.5.243 10.1080/13676261.2010.551112 10.1080/13676261.2010.506524 10.1016/j.childyouth.2010.05.009 10.1111/jan.12388 10.1177/1049732306294515 10.1111/j.1442-2018.2009.00448.x 10.1186/s12889-020-09166-7 10.1111/nhs.12077 10.1177/1468018107073892 10.1111/hsc.12574 10.1080/09540120903016537 10.2989/16085906.2012.734979 10.3109/01612840.2013.791736 10.1186/1471-2288-14-80 10.1080/02673843.2015.1061568 10.1111/j.1365-2850.2011.01829.x 10.1007/s10902-011-9316-0 10.1186/s12913-020-05780-8 10.1111/scs.12030 10.1177/1468794103033003 10.1080/17450128.2014.980370 10.5042/jcs.2010.0693 10.1192/bjb.2019.78 10.1007/s40894-019-00119-9 10.1002/j.1839-4655.2010.tb00192.x 10.1111/j.1442-2018.2012.00727.x 10.1177/1471301209349106 10.1080/15524256.2016.1252828 10.1111/hsc.12547 10.1258/135581902320432732 10.2105/AJPH.2005.067702 10.2989/16085906.2012.698081 10.1177/1471301214532111 10.3389/fpsyg.2019.02859 10.1080/0145935X.2018.1491303 10.1177/0743558411417868 10.1016/j.puhe.2020.05.002 10.1111/hsc.13061 10.1007/s40894-015-0015-7 10.1186/s40639-017-0041-3 10.1177/1049732318800676 10.1188/20.ONF.165-176 10.1080/01425692.2021.1947189 10.1177/1043659608322417 10.1080/13676261003801739 10.1046/j.1365-2206.2003.00266.x 10.1093/geront/gnaa161 10.1332/239788220X15859363711424 10.1080/17496535.2020.1771606 10.1007/s12187-019-09647-1 10.1016/j.adolescence.2018.09.001 10.1080/14768320601020154 10.4135/9781412985000 |
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| Copyright | 2022 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License. 2022 by the authors. 2022 |
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| Keywords | meta-ethnography qualitative caregiving youth young carer |
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| References | Stamatopoulos (ref_6) 2014; 18 Joseph (ref_24) 2019; 5 Grose (ref_29) 2013; 15 Aga (ref_48) 2014; 16 Bolas (ref_15) 2007; 22 Prorok (ref_30) 2013; 185 Kavanaugh (ref_42) 2016; 12 Robison (ref_64) 2020; 185 ref_10 Nap (ref_74) 2020; 20 Clabburn (ref_37) 2015; 11 Aga (ref_47) 2009; 20 Chan (ref_57) 2010; 5 Brimblecombe (ref_18) 2020; 20 ref_17 ref_16 Hutchinson (ref_69) 2014; 15 Williams (ref_39) 2020; 30 Leu (ref_22) 2020; 28 Smyth (ref_60) 2011; 33 Wilczynski (ref_76) 2007; 175 Stamatopoulos (ref_12) 2018; 39 (ref_36) 2019; 18 Doyle (ref_28) 2003; 3 Cluver (ref_38) 2012; 27 Newman (ref_23) 2021; 42 Kemp (ref_4) 2021; 61 Andersen (ref_34) 2012; 11 Hendricks (ref_2) 2021; 38 Becker (ref_5) 2007; 7 Ali (ref_52) 2011; 19 Newman (ref_49) 2019; 40 Nyamongo (ref_59) 2012; 11 Nickels (ref_44) 2018; 69 Bjorgvinsdottir (ref_54) 2013; 28 ref_26 Barry (ref_35) 2011; 14 Kavanaugh (ref_3) 2015; 1 Goldblatt (ref_55) 2018; 29 Leu (ref_73) 2018; 26 Rose (ref_25) 2010; 13 Dharampal (ref_63) 2019; 44 Thomas (ref_21) 2003; 8 ref_71 Chikhradze (ref_67) 2017; 4 ref_70 Allen (ref_33) 2009; 8 McGibbon (ref_40) 2019; 49 Skovdal (ref_41) 2009; 22 Britten (ref_27) 2002; 7 ref_75 McDougall (ref_61) 2018; 26 Wong (ref_31) 2004; 107 Kavanaugh (ref_66) 2015; 10 Forinder (ref_53) 2019; 28 Thrasher (ref_32) 2010; 66 Silverman (ref_50) 2020; 4 Hamilton (ref_13) 2019; 13 Lally (ref_43) 2020; 47 Stamatopoulos (ref_20) 2014; 21 Redmond (ref_19) 2021; 43 Lloyd (ref_65) 2012; 14 Kale (ref_56) 2020; 191 Aga (ref_46) 2009; 11 Daniel (ref_72) 2014; 70 Smyth (ref_62) 2011; 14 ref_1 Levine (ref_11) 2005; 95 Haugland (ref_14) 2020; 10 Boyle (ref_68) 2020; 14 Meredith (ref_8) 1991; 3 ref_9 Williams (ref_45) 2009; 15 ref_7 Ali (ref_51) 2013; 34 McDonald (ref_58) 2010; 45 |
| References_xml | – ident: ref_9 – volume: 30 start-page: 717 year: 2020 ident: ref_39 article-title: “Thrown into the Deep End”: Mapping the Experiences of Young People Living in a Family Affected by a Neurological Condition publication-title: Qual. Health Res. doi: 10.1177/1049732319900498 – volume: 49 start-page: 1162 year: 2019 ident: ref_40 article-title: Young carers in Northern Ireland: Perceptions of and responses to illness and disability within the family publication-title: Br. J. Soc. Work doi: 10.1093/bjsw/bcy102 – volume: 18 start-page: 809 year: 2014 ident: ref_6 article-title: One million and counting: The hidden army of young carers in Canada publication-title: J. Youth Stud. doi: 10.1080/13676261.2014.992329 – volume: 185 start-page: E669 year: 2013 ident: ref_30 article-title: Health care experiences of people with dementia and their caregivers: A meta-ethnographic analysis of qualitative studies publication-title: Can. Med. Assoc. J. doi: 10.1503/cmaj.121795 – ident: ref_16 – volume: 66 start-page: 482 year: 2010 ident: ref_32 article-title: Nurses’ experiences with telephone triage and advice: A meta-ethnography publication-title: J. Adv. Nurs. doi: 10.1111/j.1365-2648.2010.05275.x – volume: 15 start-page: 273 year: 2009 ident: ref_45 article-title: Caregiving by Teens for Family Members with Huntington Disease publication-title: J. Fam. Nurs. doi: 10.1177/1074840709337126 – ident: ref_1 – volume: 11 start-page: 243 year: 2015 ident: ref_37 article-title: Exploring the impact on young people who are caring and grieving for a parent with motor neurone disease publication-title: Br. J. Neurosci. Nurs. doi: 10.12968/bjnn.2015.11.5.243 – volume: 14 start-page: 523 year: 2011 ident: ref_35 article-title: ‘I realised that I wasn’t alone’: The views and experiences of young carers from a social capital perspective publication-title: J. Youth Stud. doi: 10.1080/13676261.2010.551112 – volume: 14 start-page: 145 year: 2011 ident: ref_62 article-title: ‘So that’s how I found out I was a young carer and that I actually had been a carer most of my life’. Identifying and supporting hidden young carers publication-title: J. Youth Stud. doi: 10.1080/13676261.2010.506524 – volume: 33 start-page: 509 year: 2011 ident: ref_60 article-title: Children and young people as active agents in care-giving: Agency and constraint publication-title: Child. Youth Serv. Rev. doi: 10.1016/j.childyouth.2010.05.009 – volume: 70 start-page: 2314 year: 2014 ident: ref_72 article-title: Prevalence and effects of caregiving on children publication-title: J. Adv. Nurs. doi: 10.1111/jan.12388 – volume: 3 start-page: 47 year: 1991 ident: ref_8 article-title: Young carers: The unacceptable face of community care publication-title: Soc. Work Soc. Sci. Rev. – volume: 175 start-page: 705 year: 2007 ident: ref_76 article-title: Search strategies for identifying qualitative studies in CINAHL publication-title: Qual. Health Res. doi: 10.1177/1049732306294515 – volume: 11 start-page: 244 year: 2009 ident: ref_46 article-title: Sociocultural factors influencing HIV/AIDS caregiving in Addis Ababa, Ethiopia publication-title: Nurs. Health Sci. doi: 10.1111/j.1442-2018.2009.00448.x – volume: 20 start-page: 1 year: 2020 ident: ref_18 article-title: The high cost of unpaid care by young people: Health and economic impacts of providing unpaid care publication-title: BMC Public Health doi: 10.1186/s12889-020-09166-7 – volume: 16 start-page: 149 year: 2014 ident: ref_48 article-title: Caregiving actions: Outgrowths of the family caregiver’s conceptions of care publication-title: Nurs. Health Sci. doi: 10.1111/nhs.12077 – volume: 7 start-page: 23 year: 2007 ident: ref_5 article-title: Global perspectives on children’s unpaid caregiving in the family: Research and policy on ‘young carers’ in the UK, Australia, the USA and Sub-Saharan Africa publication-title: Glob. Soc. Policy doi: 10.1177/1468018107073892 – volume: 26 start-page: e560 year: 2018 ident: ref_73 article-title: “You don’t look for it”—A study of Swiss professionals’ awareness of young carers and their support needs publication-title: Health Soc. Care Community doi: 10.1111/hsc.12574 – volume: 38 start-page: 491 year: 2021 ident: ref_2 article-title: How Far Have We Come? An Updated Scoping Review of Young Carers in the U.S publication-title: Infant Ment. Health J. – ident: ref_10 – volume: 22 start-page: 96 year: 2009 ident: ref_41 article-title: Children caring for their “caregivers”: Exploring the caring arrangements in households affected by AIDS in Western Kenya publication-title: AIDS Care doi: 10.1080/09540120903016537 – volume: 11 start-page: 203 year: 2012 ident: ref_34 article-title: Children’s caregiving of HIV-infected parents accessing treatment in western Kenya: Challenges and coping strategies publication-title: Afr. J. AIDS Res. doi: 10.2989/16085906.2012.734979 – volume: 34 start-page: 611 year: 2013 ident: ref_51 article-title: Support for Young Informal Carers of Persons with Mental Illness: A Mixed-Method Study publication-title: Issues Ment. Health Nurs. doi: 10.3109/01612840.2013.791736 – ident: ref_71 doi: 10.1186/1471-2288-14-80 – ident: ref_17 – volume: 21 start-page: 178 year: 2014 ident: ref_20 article-title: Supporting young carers: A qualitative review of young carer services in Canada publication-title: Int. J. Adolesc. Youth doi: 10.1080/02673843.2015.1061568 – volume: 19 start-page: 610 year: 2011 ident: ref_52 article-title: Daily life for young adults who care for a person with mental illness: A qualitative study publication-title: J. Psychiatr. Ment. Health Nurs. doi: 10.1111/j.1365-2850.2011.01829.x – volume: 14 start-page: 67 year: 2012 ident: ref_65 article-title: Happiness and Well-Being of Young Carers: Extent, Nature and Correlates of Caring Among 10 and 11 Year Old School Children publication-title: J. Happiness Stud. doi: 10.1007/s10902-011-9316-0 – volume: 20 start-page: 1 year: 2020 ident: ref_74 article-title: The awareness, visibility and support for young carers across Europe: A Delphi study publication-title: BMC Health Serv. Res. doi: 10.1186/s12913-020-05780-8 – volume: 28 start-page: 38 year: 2013 ident: ref_54 article-title: Silent, invisible and unacknowledged: Experiences of young caregivers of single parents diagnosed with multiple sclerosis publication-title: Scand. J. Caring Sci. doi: 10.1111/scs.12030 – volume: 3 start-page: 321 year: 2003 ident: ref_28 article-title: Synthesis through meta-ethnography: Paradoxes, enhancements, and possibilities publication-title: Qual. Res. doi: 10.1177/1468794103033003 – volume: 10 start-page: 12 year: 2015 ident: ref_66 article-title: “It’d be nice if someone asked me how I was doing. Like,‘cause I will have an answer”: Exploring support needs of young carers of a parent with Huntington’s disease publication-title: Vulnerable Child. Youth Stud. doi: 10.1080/17450128.2014.980370 – ident: ref_7 – volume: 5 start-page: 31 year: 2010 ident: ref_57 article-title: Growing up with a parent with schizophrenia: What children say they need publication-title: J. Child. Serv. doi: 10.5042/jcs.2010.0693 – volume: 44 start-page: 112 year: 2019 ident: ref_63 article-title: The emotional and mental health needs of young carers: What psychiatry can do publication-title: BJPsych Bull. doi: 10.1192/bjb.2019.78 – volume: 5 start-page: 77 year: 2019 ident: ref_24 article-title: Young Carers Research, Practice and Policy: An Overview and Critical Perspective on Possible Future Directions publication-title: Adolesc. Res. Rev. doi: 10.1007/s40894-019-00119-9 – volume: 18 start-page: 230 year: 2019 ident: ref_36 article-title: Young adult carers: Making choices and managing relationships with a parent with a mental illness publication-title: Adv. Ment. Health – volume: 45 start-page: 459 year: 2010 ident: ref_58 article-title: Change and Adaptation in Families with Young Carers publication-title: Aust. J. Soc. Issues doi: 10.1002/j.1839-4655.2010.tb00192.x – volume: 15 start-page: 113 year: 2013 ident: ref_29 article-title: Using meta-ethnography to understand the emotional impact of caring for people with increasing cognitive impairment publication-title: Nurs. Health Sci. doi: 10.1111/j.1442-2018.2012.00727.x – volume: 40 start-page: 6 year: 2019 ident: ref_49 article-title: Carers need care too: Recalling the experience OF being a young female carer for a relative living with dementia publication-title: Perspectives – volume: 107 start-page: 311 year: 2004 ident: ref_31 article-title: Developing Optimal Search Strategies for Detecting Clinically Relevant Qualitative publication-title: Medinfo – volume: 8 start-page: 455 year: 2009 ident: ref_33 article-title: Having a father with young onset dementia: The impact on well-being of young people publication-title: Dementia doi: 10.1177/1471301209349106 – volume: 12 start-page: 348 year: 2016 ident: ref_42 article-title: Caregiving Youth Knowledge and Perceptions of Parental End-of-Life Wishes in Huntington’s Disease publication-title: J. Soc. Work End Life Palliat. Care doi: 10.1080/15524256.2016.1252828 – volume: 42 start-page: 7 year: 2021 ident: ref_23 article-title: Exploring nurses’ knowledge, skills and experience with young caregivers publication-title: Perspectives – volume: 26 start-page: 572 year: 2018 ident: ref_61 article-title: “Something that happens at home and stays at home”: An exploration of the lived experience of young carers in Western Australia publication-title: Health Soc. Care Community doi: 10.1111/hsc.12547 – volume: 7 start-page: 209 year: 2002 ident: ref_27 article-title: Using meta ethnography to synthesise qualitative research: A worked example publication-title: J. Health Serv. Res. Policy doi: 10.1258/135581902320432732 – volume: 95 start-page: 2071 year: 2005 ident: ref_11 article-title: Young Adult Caregivers: A First Look at an Unstudied Population publication-title: Am. J. Public Health doi: 10.2105/AJPH.2005.067702 – volume: 11 start-page: 135 year: 2012 ident: ref_59 article-title: Children as caregivers of older relatives living with HIV and AIDS in Nyang’oma division of western Kenya publication-title: Afr. J. AIDS Res. doi: 10.2989/16085906.2012.698081 – volume: 15 start-page: 609 year: 2014 ident: ref_69 article-title: The emotional well-being of young people having a parent with younger onset dementia publication-title: Dementia doi: 10.1177/1471301214532111 – volume: 28 start-page: 1 year: 2019 ident: ref_53 article-title: ‘If I whistled in her ear she’d wake up’: Children’s narration about their experiences of growing up in alcoholic families publication-title: J. Fam. Stud. – volume: 10 start-page: 2859 year: 2020 ident: ref_14 article-title: The Burden of Care: A National Survey on the Prevalence, Demographic Characteristics and Health Problems Among Young Adult Carers Attending Higher Education in Norway publication-title: Front. Psychol. doi: 10.3389/fpsyg.2019.02859 – ident: ref_75 – volume: 39 start-page: 180 year: 2018 ident: ref_12 article-title: The young carer penalty: Exploring the costs of caregiving among a sample of Canadian youth publication-title: Child Youth Serv. doi: 10.1080/0145935X.2018.1491303 – volume: 191 start-page: 1 year: 2020 ident: ref_56 article-title: The participation of children in caregiving of their siblings with special needs and peer relationship in rural Turkey publication-title: Early Child Dev. Care – volume: 27 start-page: 581 year: 2012 ident: ref_38 article-title: “I Can’t Go to School and Leave Her in So Much Pain” Educational Shortfalls Among Adolescent ‘Young Carers’ in the South African AIDS Epidemic publication-title: J. Adolesc. Res. doi: 10.1177/0743558411417868 – volume: 185 start-page: 139 year: 2020 ident: ref_64 article-title: The health, well-being and future opportunities of young carers: A population approach publication-title: Public Health doi: 10.1016/j.puhe.2020.05.002 – volume: 28 start-page: 2390 year: 2020 ident: ref_22 article-title: Caring in mind? Professionals’ awareness of young carers and young adult carers in Switzerland publication-title: Health Soc. Care Community doi: 10.1111/hsc.13061 – volume: 1 start-page: 29 year: 2015 ident: ref_3 article-title: Unacknowledged Caregivers: A Scoping Review of Research on Caregiving Youth in the United States publication-title: Adolesc. Res. Rev. doi: 10.1007/s40894-015-0015-7 – volume: 4 start-page: 12 year: 2017 ident: ref_67 article-title: Young carers: Growing up with chronic illness in the family—A systematic review 2007–2017 publication-title: J. Compassionate Health Care doi: 10.1186/s40639-017-0041-3 – volume: 29 start-page: 533 year: 2018 ident: ref_55 article-title: “Death Lay Here on the Sofa”: Reflections of Young Adults on Their Experience as Caregivers of Parents Who Died of Cancer at Home publication-title: Qual. Health Res. doi: 10.1177/1049732318800676 – volume: 47 start-page: 165 year: 2020 ident: ref_43 article-title: Experiences and Needs of African American Children and Adolescents in Supportive Care Roles for a Relative with Breast Cancer publication-title: Oncol. Nurs. Forum doi: 10.1188/20.ONF.165-176 – ident: ref_70 – volume: 43 start-page: 84 year: 2021 ident: ref_19 article-title: Projects-of-self and projects-of-family: Young people’s responsibilisation for their education and responsibility for care publication-title: Br. J. Sociol. Educ. doi: 10.1080/01425692.2021.1947189 – volume: 20 start-page: 37 year: 2009 ident: ref_47 article-title: The conceptions of care among family caregivers of persons living with HIV/AIDS in Addis Ababa, Ethiopia publication-title: J. Transcult. Nurs. doi: 10.1177/1043659608322417 – volume: 13 start-page: 473 year: 2010 ident: ref_25 article-title: The experiences of young carers: A meta-synthesis of qualitative findings publication-title: J. Youth Stud. doi: 10.1080/13676261003801739 – volume: 8 start-page: 35 year: 2003 ident: ref_21 article-title: Your friends don’t understand’: Invisibility and unmet need in the lives of ‘young carers publication-title: Child Fam. Soc. Work doi: 10.1046/j.1365-2206.2003.00266.x – volume: 61 start-page: 145 year: 2021 ident: ref_4 article-title: MoreThanAVisitor: Families as “essential” care partners during COVID-19 publication-title: Gerontologist doi: 10.1093/geront/gnaa161 – volume: 4 start-page: 331 year: 2020 ident: ref_50 article-title: “I’ve always been the one who drops everything”: The lived experiences and life-course impacts of young adult women carers publication-title: Int. J. Care Caring doi: 10.1332/239788220X15859363711424 – volume: 14 start-page: 266 year: 2020 ident: ref_68 article-title: The Moral Resilience of Young People Who Care publication-title: Ethic Soc. Welf. doi: 10.1080/17496535.2020.1771606 – volume: 13 start-page: 33 year: 2019 ident: ref_13 article-title: Are Young Carers Less Engaged in School than Non-Carers? Evidence from a Representative Australian Study publication-title: Child Indic. Res. doi: 10.1007/s12187-019-09647-1 – volume: 69 start-page: 33 year: 2018 ident: ref_44 article-title: Medication administration by caregiving youth: An inside look at how adolescents manage medications for family members publication-title: J. Adolesc. doi: 10.1016/j.adolescence.2018.09.001 – volume: 22 start-page: 829 year: 2007 ident: ref_15 article-title: The well-being of young people who care for a dependent relative: An interpretative phenomenological analysis publication-title: Psychol. Health doi: 10.1080/14768320601020154 – ident: ref_26 doi: 10.4135/9781412985000 |
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| SubjectTerms | Adolescent Anthropology, Cultural Caregivers Caregivers - psychology Chronic illnesses Delivery of Health Care Empirical Research Ethnography Families & family life Humans Mental disorders Mental health Peers Qualitative Research Roles Subject heading schemes Systematic Review Young adults |
| Title | The Young Carers’ Journey: A Systematic Review and Meta Ethnography |
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