“Something that happens at home and stays at home”: An exploration of the lived experience of young carers in Western Australia
Emma McDougall BPsych (Hons)
School of Psychology and Speech Pathology, Curtin University, Perth, WA, Australia
Search for more papers by this authorCorresponding Author
Moira O'Connor BA (Hons), MSc, PhD
School of Psychology and Speech Pathology, Curtin University, Perth, WA, Australia
Correspondence
Moira O'Connor, School of Psychology and Speech Pathology, Curtin University, Perth, WA, Australia.
Email: [email protected]
Search for more papers by this authorJoel Howell BSc (Hons), MPsych (Clin), PhD
School of Psychology and Speech Pathology, Curtin University, Perth, WA, Australia
Search for more papers by this authorEmma McDougall BPsych (Hons)
School of Psychology and Speech Pathology, Curtin University, Perth, WA, Australia
Search for more papers by this authorCorresponding Author
Moira O'Connor BA (Hons), MSc, PhD
School of Psychology and Speech Pathology, Curtin University, Perth, WA, Australia
Correspondence
Moira O'Connor, School of Psychology and Speech Pathology, Curtin University, Perth, WA, Australia.
Email: [email protected]
Search for more papers by this authorJoel Howell BSc (Hons), MPsych (Clin), PhD
School of Psychology and Speech Pathology, Curtin University, Perth, WA, Australia
Search for more papers by this authorAbstract
There are approximately 350,000 young carers in Australia, yet their experience is not well understood. Young carers face adversities and disenfranchisement by being a young person in a caring role, and the role can affect other areas of their lives. We explored the lived experiences of young carers, aged 14–25 years (N = 13), from Western Australia through in-depth semi-structured interviews. A phenomenological approach was adopted. A thematic analysis of the transcribed interview data revealed four key themes. “Lessons from the experience” articulates the perceived benefits of the role and the themes: “navigating competing demands,” “desire for normalcy” and “lost in the system” capture the struggles and complexities associated with being a young carer. Although there are challenges to being a young carer, it is something that young carers report can be beneficial and something that is done for those they love.
REFERENCES
- Aldridge, J. (2006). The experiences of children living with and caring for parents with mental illness. Child Abuse Review, 15, 79–88. https://doi.org/10.1002/car.904
10.1002/car.904 Google Scholar
- Anderson, C. (2010). Presenting and evaluating qualitative research. American Journal of Pharmaceutical Education, 74, 141.
- Australian Bureau of Statistics. (2004). Disability, ageing and carers 2003: Summary of findings Australia (No. 4430.0). Canberra, ACT. Available from: http://www.abs.gov.au [last accessed 15th June 2016].
- Australian Bureau of Statistics. (2013). Disability, ageing and carers, Australia: Summary of findings (No. 4430.0). Canberra, ACT. Available from: http://www.abs.gov.au [last accessed 15th June 2017].
- Australian Bureau of Statistics. (2015). Disability, ageing and carers, Australia: Summary of findings (No. 4430.0). Canberra, ACT. Available from: http://www.abs.gov.au [last accessed 15th June 2016].
- Australian Institute of Health and Welfare. (2014). Australia's health 2014 (No. 178). Canberra, ACT: AIHW.
- 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, 23–50. https://doi.org/10.1177/1468018107073892
10.1177/1468018107073892 Google Scholar
- Bradbury-Jones, C. (2007). Enhancing rigour in qualitative health research: Exploring subjectivity through Peshkin's I's. Journal of Advanced Nursing, 59, 290–298. https://doi.org/10.1111/j.1365-2648.2007.04306.x
- Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101. https://doi.org/10.1191/1478088706qp063oa
10.1191/1478088706qp063oa Google Scholar
- Brown, K. W., & Ryan, R. M. (2003). The benefits of being present: Mindfulness and its role in psychological well-being. Journal of Personality and Social Psychology, 84, 822.
- Carer Recognition Act. (2010). (Cth) s.7. Available from: https://www.legislation.gov.au/Details/C2010A00123 [last accessed 25th August 2016].
- Carers Australia. (2013). Supporting young carers in secondary schools. Available from: https://professionals.carers.org/sites/default/files/supporting_young_carers_in_schools_-_an_introduction.pdf [last accessed 1st September 2016].
- Carers Western Australia. (2010). About carers. Available from: https://www.carerswa.asn.au/about-carers-wa/who-are-carers-wa/ [last accessed 2nd March 2016].
- Cass, B., Smyth, C., Hill, T., Blaxland, M., & Hamilton, M. (2009). Young carers in Australia: Understanding the advantages and disadvantages of their care giving, 38. Canberra, ACT: Department of Families, Housing, Community Services and Indigenous Affairs.
- Chadi, N., & Stamatopoulos, V. (2017). Caring for young carers in Canada. Canadian Medical Association Journal, 189, 925–926. https://doi.org/10.1503/cmaj.170145
- Colombo, F. (2011). The impact of caring on family carers. Help wanted?: Providing and paying for long-term care. Paris: OECD.
10.1787/9789264097759-en Google Scholar
- Cotterell, J. (1996). Social networks and social influences in adolescence. New York: Routledge.
- Cree, V. (2003). Worries and problems of young carers: Issues for mental health. Child and Family Social Work, 8, 301–309. https://doi.org/10.1046/j.1365-2206.2003.00292.x
10.1046/j.1365-2206.2003.00292.x Google Scholar
- Day, C. (2015). Young adult carers: A literature review informing the re-conceptualisation of young adult caregiving in Australia. Journal of Youth Studies, 18, 855–866. https://doi.org/10.1080/13676261.2014.1001826
- Department of Health. (1999). Caring about carers: A national strategy for carers. London: Stationary Office.
- Earley, L., & Cushway, D. J. (2002). The parentified child. Clinical Child Psychology and Psychiatry, 2, 163–178. https://doi.org/10.1177/1359104502007002917
10.1177/1359104502007002005 Google Scholar
- Eley, S. (2004). ‘If they don't recognize it, you've got to deal with it yourself’: Gender, young caring and educational support. Gender and Education, 16, 65–75. https://doi.org/10.1080/0954025032000170345
- Emden, C., & Sandelowski, M. (1998). The good, the bad and the relative, part one: Conceptions of goodness in qualitative research. International Journal of Nursing Practice, 4, 206–212.
- Gill, P., Stewart, K., Treasure, E., & Chadwick, B. (2008). Methods of data collection in qualitative research: Interviews and focus groups. British Dental Journal, 204, 291–295. https://doi.org/10.1038/bdj.2008.192
- Guest, G., MacQueen, K. M., & Namey, E. E. (2012). Applied thematic analysis. Thousand Oaks, CA: Sage.
10.4135/9781483384436 Google Scholar
- Hamilton, M. G., & Adamson, E. (2013). Bounded agency in young carers’ lifecourse-stage domains and transitions. Journal of Youth Studies, 16, 101–117. https://doi.org/10.1080/13676261.2012.710743
- Hamilton, M., & Cass, B. (2017). Capturing the centrality of age and life-course stage in the provision of unpaid care. Journal of Sociology, 53, 79–93. https://doi.org/10.1177/1440783315625117
- Heyman, A., & Heyman, B. (2013). ‘The sooner you can change their life course the better’: The time-framing of risks in relationship to being a young carer. Health, Risk & Society, 15, 561–579. https://doi.org/10.1080/13698575.2013.830080
- Hudson, L., & Ozanne, J. (1988). Alternative ways of seeking knowledge in consumer research. Journal of Consumer Research, 14, 508–521.
- Husserl, E. (1962). Ideas: General introduction to pure phenomenology. New York, NY: Collier Books.
- Jenkins, A., Rowland, F., Angus, P., & Hales, C. (2003). The future supply of informal care, 2003 to 2013. Canberra, ACT: AIHW.
- Kavanaugh, M. (2014). Children and adolescents providing care to a parent with Huntington's disease: Disease symptoms, caregiving tasks and young carer wellbeing. Child & Youth Care Forum, 43, 675–690. https://doi.org/10.1007/s10566-014-9258-x
- Kleiman, S. (2004). Phenomenology: To wonder and search for meanings. Nurse Researcher, 11, 7–19. https://doi.org/10.7748/nr2004.07.11.4.7.c6211
- Knowles, S., Combs, R., Kirk, S., Griffiths, M., Patel, N., & Sanders, C. (2015). Hidden caring, hidden carers? Exploring the experience of carers for people with long-term conditions. Health & Social Care in the Community, 24, 203–213. https://doi.org/10.1111/hsc.12207
- Moore, T. (2005). Reading between the lines: Talking to children and young people about their experiences of young caring. Canberra, ACT: Youth Coalition of the ACT.
- Moore, T., & McArthur, M. (2007). We're all in it together: Supporting young carers and their families in Australia. Health and Social Care in the Community, 15, 561–568. https://doi.org/10.1111/j.1365-2524.2007.00719.x
- Morrow, R. (2005). A profile of known young carers and identification and snapshot of the ones who are hidden. Perth, WA: Curtin University of Technology.
- Morsy, H. (2012). Scarred generation. Finance & Development, 49, 15–17.
- Neuman, W. L. (2014). Social research methods: Qualitative and quantitative approaches ( 4th ed.). Boston, MA: Pearson.
- Noble-Carr, D., & DFaCS. (2002). Young carers research project: A Carers Australia Project. Canberra, ACT: Department of Family and Community Services (DFaCS).
- O'Dell, L., Crafter, S., de Abreu, G., & Cline, T. (2010). Constructing ‘normal childhoods’: Young people talk about young carers. Disability & Society, 25, 643–655. https://doi.org/10.1080/09687599.2010.505734
- O'Reilly, D., Connolly, S., Rosato, M., & Patterson, C. (2008). Is caring associated with an increased risk of mortality? A longitudinal study. Social Science & Medicine, 67, 1282–1290. https://doi.org/10.1016/j.socscimed.2008.06.025
- Richards, D., & Viganó, N. (2013). Online counselling: A narrative and critical review of the literature. Journal of Clinical Psychology, 69, 994–1011. https://doi.org/10.1002/jclp.21974
- Rose, R., & Cohen, K. (2010). The experiences of young carers: A meta-synthesis of qualitative findings. Journal of Youth Studies, 13, 473–487. https://doi.org/10.1080/1367626100380173
- Smyth, C., Blaxland, M., & Cass, B. (2010). ‘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, 145–160. https://doi.org/10.1080/13676261.2010.506524
- Stamatopoulos, V. (2015). Supporting young carers: A qualitative review of young carer services in Canada. International Journal of Adolescence and Youth, 21, 178–194. https://doi.org/10.1080/02673843.2015.1061568
- Thomas, N., Stainton, T., Jackson, S., Cheung, W., Doubtfire, S., & Webb, A. (2003). ‘Your friends don't understand’: Invisibility and unmet need in the lives of ‘young carers’. Child and Family Social Work, 8, 35–46.
10.1046/j.1365-2206.2003.00266.x Google Scholar
- United Nations, Department of Economic and Social Affairs, Population Division. (2015). World population ageing 2015. New York, NY.
- Van Houtven, H., & Norton, C. (2004). Informal care and health care use of older adults. Journal of Health Economics, 23, 1159–1180. https://doi.org/10.1016/j.jhealeco.2004.04.008
- Whitebird, R., Kreitzer, M., Crain, L., Lewis, A., Hanson, R., & Enstad, J. (2013). Mindfulness-based stress reduction for family carers: A randomized controlled trial. The Gerontologist, 53, 676–686. https://doi.org/10.1093/geront/gns12
- World Health Organization. (2008). Home care in Europe. Available from: http://www.euro.who.int/__data/assets/pdf_file/0005/96467/E91884.pdf [last accessed 1st September 2016].