The experience of young carers in Australia: a qualitative systematic review and meta-ethnographic synthesis

References

• Aldridge, J. (2018). Where are we now? Twenty-five years of research, policy and practice on young carers. Critical Social Policy, 38(1), 155–15. https://doi.org/10.1177/0261018317724525
   Web of Science ®Google Scholar
• Alfonzo, L., Singh, A., Disney, G., Ervin, J., & King, T. (2022). Mental health of young informal carers: A systematic review. Social Psychiatry and Psychiatric Epidemiology, 57(12), 2345–2358. https://doi.org/10.1007/s00127-022-02333-8
   PubMed Web of Science ®Google Scholar
• Australian Bureau of Statistics. (2020). Migration, Australia. ABS. https://www.abs.gov.au/statistics/people/population/migration-australia/2019-20
   Google Scholar
• Becker, S. (2007). 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. Global Social Policy, 7(1), 23–50. https://doi.org/10.1177/1468018107073892
   Google Scholar
• Blum, H. (2004). Separation-individuation theory and attachment theory. Journal of the American Psychoanalytic Association, 52(2), 535–553. https://doi.org/10.1177/00030651040520020501
   PubMed Web of Science ®Google Scholar
• Boese, M., & Phillips, M. (2011). Multiculturalism and social inclusion in Australia. Journal of Intercultural Studies, 32(2), 189–197. https://doi.org/10.1080/07256868.2011.547176
   Google Scholar
• Britten, N., Campbell, R., Pope, C., Donovan, J., Morgan, M., & Pill, R. (2002). Using meta ethnography to synthesise qualitative research: A worked example. Journal of Health Services Research & Policy, 7(4), 209–215. https://doi.org/10.1258/135581902320432732
   PubMedGoogle Scholar
• Cahill, M., Robinson, K., Pettigrew, J., Galvin, R., & Stanley, M. (2018). Qualitative synthesis: A guide to conducting a meta-ethnography. British Journal of Occupational Therapy, 81(3), 129–137. https://doi.org/10.1177/0308022617745016
   Web of Science ®Google Scholar
• Dawes, K., Carlino, A., van den Berg, M., & Killington, M. (2022). Life altering effects on children when a family member has an acquired brain injury; a qualitative exploration of child and family perceptions. Disability and Rehabilitation, 44(2), 282–290. https://doi.org/10.1080/09638288.2020.1766582
   PubMed Web of Science ®Google Scholar
• Day, C. (2021). An empirical case study of young adult carers’ engagement and success in higher education. International Journal of Inclusive Education, 25(14), 1597–1615. https://doi.org/10.1080/13603116.2019.1624843
   Web of Science ®Google Scholar
• Dunkley-Smith, A. J., Reupert, A. E., Ling, M., & Sheen, J. A. (2021). Experiences and perspectives of self-compassion from young adult children of parents with mental illness. Journal of Adolescence, 89(1), 183–193. https://doi.org/10.1016/j.adolescence.2021.05.001
   PubMedGoogle Scholar
• Farmer, D. (2015). A comparative analysis amongst three Western Nations and the United States educational systems [ Doctoral dissertation]. Northern Arizona University.
   Google Scholar
• Foster, K. (2010). ‘You’d think this roller coaster was never going to stop’: Experiences of adult children of parents with serious mental illness. Journal of Clinical Nursing, 19(21–22), 3143–3151. https://doi.org/10.1111/j.1365-2702.2010.03293.x
   PubMed Web of Science ®Google Scholar
• Fudge, E., & Mason, P. (2004). Consulting with young people about service guidelines relating to parental mental illness. Australian e-Journal for the Advancement of Mental Health, 3(2), 50–58. https://doi.org/10.5172/jamh.3.2.50
   Google Scholar
• Graebner, M., Martin, J., & Roundy, P. (2012). Qualitative data: Cooking without a recipe. Strategic Organization, 10(3), 276–284. https://doi.org/10.1177/1476127012452821
   Web of Science ®Google Scholar
• Hamilton, M., & Cass, B. (2017). Capturing the centrality of age and life-course stage in the provision of unpaid care. Journal of Sociology, 53(1), 79–93. https://doi.org/10.1177/1440783315625117
   Web of Science ®Google Scholar
• Hamilton, M. G., & Adamson, E. (2012). Bounded agency in young carers’ lifecourse-stage domains and transitions. Journal of Youth Studies, 16(1), 101–117. https://doi.org/10.1080/13676261.2012.710743
   Web of Science ®Google Scholar
• Hendricks, B. A., Kavanaugh, M. S., & Bakitas, M. A. (2021). How far have we come? An updated scoping review of young carers in the U.S. Child & Adolescent Social Work Journal, 38(5), 491–504. https://doi.org/10.1007/s10560-021-00783-8
   Web of Science ®Google Scholar
• Kavanaugh, M. S., Stamatopoulos, V., Cohen, D., & Zhang, L. (2016). Unacknowledged caregivers: A scoping review of research on caregiving youth in the United States. Adolescent Research Review, 1(1), 29–49. https://doi.org/10.1007/s40894-015-0015-7
   Google Scholar
• King, T., Singh, A., & Disney, G. (2021). Associations between young informal caring and mental health: A prospective observational study using augmented inverse probability weighting. The Lancet Regional Health - Western Pacific, 15, 15. https://doi.org/10.1016/j.lanwpc.2021.100257
   Google Scholar
• Lacey, R., Xue, B., & McMunn, A. (2022). The mental and physical health of young carers: A systematic review. The Lancet Public Health, 7(9), e787–e796. https://doi.org/10.1016/S2468-2667(22)00161-X
   PubMed Web of Science ®Google Scholar
• Leu, A., & Becker, S. (2017). A cross-national and comparative classification of in-country awareness and policy responses to ‘young carers’. Journal of Youth Studies, 20(6), 750–762. https://doi.org/10.1080/13676261.2016.1260698
   Web of Science ®Google Scholar
• Leu, A., Guggiari, E., Phelps, D., Magnusson, L., Nap, H. H., Hoefman, R., Hanson, E., Santini, S., Socci, M., Boccaletti, L., Hlebec, V., Rakar, T., Hudobivnik, T., & Hanson, E. (2022). Cross-national analysis of legislation, policy and service frameworks for adolescent young carers in Europe. Journal of Youth Studies, 25(9), 1215–1235. https://doi.org/10.1080/13676261.2021.1948514
   Web of Science ®Google Scholar
• Little Dreamers. (2024). Our programs. https://www.littledreamers.org.au/programs/
   Google Scholar
• Lockwood, C., Porrit, K., Munn, Z., Rittenmeyer, L., Salmond, S., Bjerrum, M., Loveday, H., Carrier, J., & Stannard, D. (2017). Systematic reviews of qualitative evidence. Joanna Briggs Institute Reviewer’s Manual [Internet] Adelaide: The Joanna Briggs Institute. https://doi.org/10.46658/JBIMES-20-03
   Google Scholar
• McDougall, E., O’Connor, M., & Howell, J. (2018). “Something that happens at home and stays at home”: An exploration of the lived experience of young carers in Western Australia. Health & Social Care in the Community, 26(4), 572–580. https://doi.org/10.1111/hsc.12547
   PubMed Web of Science ®Google Scholar
• Metz, I., Ng, E., Cornelius, N., Hoobler, J., & Nkomo, S. (2016). A comparative review of multiculturalism in Australia, Canada, the United Kingdom, the United States and South Africa. Research Handbook of International and Comparative Perspectives on Diversity Management, 131–170. https://doi.org/10.4337/9781784719692.00010
   Google Scholar
• Mills, J., Bonner, A., & Francis, K. (2006). The development of constructivist grounded theory. International Journal of Qualitative Methods, 5(1), 25–35. https://doi.org/10.1177/160940690600500103
   Google Scholar
• Mitchell, G., & Cody, W. (1993). The role of theory in qualitative research. Nursing Science Quarterly, 6(4), 170–178. https://doi.org/10.1177/089431849300600405
   PubMedGoogle Scholar
• Moore, T., & McArthur, M. (2007). We’re all in it together: Supporting young carers and their families in Australia. Health & Social Care in the Community, 15(6), 561–568. https://doi.org/10.1111/j.1365-2524.2007.00719.x
   PubMed Web of Science ®Google Scholar
• Moore, T., McArthur, M., & Morrow, R. (2009). Attendance, achievement and participation: Young carers’ experiences of school in Australia. Australian Journal of Education, 53(1), 5–18. https://doi.org/10.1177/000494410905300102
   Web of Science ®Google Scholar
• Moore, T., McArthur, M., & Noble-Carr, D. (2010). Different but the same? Exploring the experiences of young people caring for a parent with an alcohol or other drug issue. Journal of Youth Studies, 14(2), 161–177. https://doi.org/10.1080/13676261.2010.522561
   Web of Science ®Google Scholar
• Moore, T., Noble-Carr, D., & McArthur, M. (2010). Who cares?: Young people with parents who use alcohol or other drugs talk about their experiences with services. Family Matters, 85, 18–27. https://doi.org/10.3316/ielapa.242714065223334
   Google Scholar
• Morrow, R. (2005). A profile of known young carers and identification and snapshot of the ones who are hidden. https://espace.curtin.edu.au/bitstream/handle/20.500.11937/11174/18914_downloaded_stream_6.pdf?sequence=2
   Google Scholar
• Munn, Z., Barker, T., Moola, S., Tufanaru, C., Stern, C., McArthur, A., Stephenson, M., & Aromataris, E. (2020). Methodological quality of case series studies: An introduction to the JBI critical appraisal tool. JBI Evidence Synthesis, Publish Ahead of Print (10), 2127–2133. https://doi.org/10.11124/JBISRIR-D-19-00099
   Google Scholar
• Noblit, G., Hare, R., & Hare, R. (1988). Meta-ethnography: Synthesizing qualitative studies (Vol. 11). SAGE.
   Google Scholar
• Page, M., McKenzie, J., Bossuyt, P., Boutron, I., Hoffmann, T., Mulrow, C., Shamseer, L., Tetzlaff, J. M., Akl, E., Brennan, S., Chou, R., Glanville, J., Grimshaw, J. M., Hróbjartsson, A., Lalu, M. M., Li, T., Loder, E. W., Mayo-Wilson, E. … Whiting, P. (2021). The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. International Journal of Surgery, 88, 105906. https://doi.org/10.1016/j.ijsu.2021.105906
   PubMed Web of Science ®Google Scholar
• Pakenham, K. I., Bursnall, S., Chiu, J., Cannon, T., & Okochi, M. (2006). The psychosocial impact of caregiving on young people who have a parent with an illness or disability: Comparisons between young caregivers and noncaregivers. Rehabilitation Psychology, 51(2), 113–126. https://doi.org/10.1037/0090-5550.51.2.113
   Web of Science ®Google Scholar
• Reupert, A., Goodyear, M., & Maybery, D. (2011). Engaging with, and understanding children whose parents have a dual diagnosis. Child and Adolescent Mental Health, 17(3), 153–160. https://doi.org/10.1111/j.1475-3588.2011.00622.x
   PubMed Web of Science ®Google Scholar
• Ritchie, J., Lewis, J., Nicholls, C. M., & Ormston, R. (Eds.). (2013). Qualitative research practice: A guide for social science students and researchers. SAGE.
   Google Scholar
• Rose, H., & Cohen, K. (2010). The experiences of young carers: A meta-synthesis of qualitative findings. Journal of Youth Studies, 13(4), 473–487. https://doi.org/10.1080/13676261003801739
   Web of Science ®Google Scholar
• Saragosa, M., Frew, M., Hahn-Goldberg, S., Orchanian-Cheff, A., Abrams, H., & Okrainec, K. (2022). The young carers’ journey: A systematic review and meta ethnography. International Journal of Environmental Research and Public Health, 19(10), 5826. https://doi.org/10.3390/ijerph19105826
   PubMed Web of Science ®Google Scholar
• Sattar, R., Lawton, R., Panagioti, M., & Johnson, J. (2021). Meta-ethnography in healthcare research: A guide to using a meta-ethnographic approach for literature synthesis. BMC Health Services Research, 21(1), 50. https://doi.org/10.1186/s12913-020-06049-w
   PubMed Web of Science ®Google Scholar
• Seers, K. (2015). Qualitative systematic reviews: Their importance for our understanding of research relevant to pain. British Journal of Pain, 9(1), 36–40. https://doi.org/10.1177/2049463714549777
   PubMed Web of Science ®Google Scholar
• Siskowski, C. (2006). Young caregivers: Effect of family health situations on school performance. The Journal of School Nursing, 22(3), 163–169. https://doi.org/10.1177/10598405060220030701
   PubMedGoogle Scholar
• Smyth, C., Blaxland, M., & Cass, B. (2011). ‘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. Journal of Youth Studies, 14(2), 145–160. https://doi.org/10.1080/13676261.2010.506524
   Web of Science ®Google Scholar
• Smyth, C., Cass, B., & Hill, T. (2011). Children and young people as active agents in care-giving: Agency and constraint. Children and Youth Services Review, 33(4), 509–514. https://doi.org/10.1016/j.childyouth.2010.05.009
   Web of Science ®Google Scholar
• Sterne, J., Hernán, M., Reeves, B., Savović, J., Berkman, N., Viswanathan, M., Henry, D., Altman, D. G., Ansari, M., Boutron, I., Carpenter, J. R., Chan, A.-W., Churchill, R., Deeks, J. J., Hróbjartsson, A., Kirkham, J., Jüni, P., Loke, Y. K., & Whiting, P. F. (2016). ROBINS-I: A tool for assessing risk of bias in non-randomised studies of interventions. BMJ: British Medical Journal, 355, i4919. https://doi.org/10.1136/bmj.i4919
   Web of Science ®Google Scholar
• Watson, L., & Fox, R. (2018). Adopting a participatory methodology and post‐structural epistemology: Reflections on a research project with young people. Journal of Community & Applied Social Psychology, 28(6), 471–482. https://doi.org/10.1002/casp.2380
   Web of Science ®Google Scholar
• Wendt, C., Mischke, M., Pfeifer, M., & Reibling, N. (2012). Confidence in receiving medical care when seriously ill: A seven-country comparison of the impact of cost barriers. Health Expectations, 15(2), 212–224. https://doi.org/10.1111/j.1369-7625.2011.00677.x
   PubMed Web of Science ®Google Scholar
• Young Carers Network. (2024). Young carer bursary. https://youngcarersnetwork.com.au/bursary/young-carer-bursary/
   Google Scholar