Exploring young carers' agency

Qualitative Research Journal

Volumn 10, Issue 2, 2010, Pages 36-50

  Smyth, Ciara ^a   Michail, Samia ^b  

^a UNIVERSITY OF NEW SOUTH WALES   (Australia)

^b Uniting Care Children Young People and Families   (Australia)

Author keywords

Children and young people; Consent; Ethics; Methodology; Young carers

Indexed keywords

EID: 78649572267     PISSN: 14439883     EISSN: 14480980     Source Type: Journal    
DOI: 10.3316/QRJ1002036     Document Type: Article

References (79)

1. Advisory Council on the Misuse of Drugs (ACMD). (2003). Hidden harm: Responding to the needs of children of problem drug users. London: Home Office.
2. Alanen, L. (1988). Rethinking childhood. Acta Sociologica, 31(1), 53-67. [CrossRef]
3. Alderson, P. (2000). Young children's rights. London: Jessica Kingsley.
4. Aldridge, J. (2008). All work and no play? Understanding the needs of children with caring Responsibilities. Children and Society, 22(4), 253-264. [CrossRef]
5. Aldridge, J. (2007). Picture this: The use of participatory photographic research methods with people with learning disabilities. Disability & Society, 22(1), 1-17.[CrossRef]
6. Aldridge, J. & Becker, S. (1993). Children who care. Inside the world of young carers. Leicestershire: Loughborough University.
7. Aldridge, J. & Becker, S. (1994). My child, my carer. The parents' perspective. Leicestershire: Loughborough University.
8. Aldridge, J. & Sharpe, D. (2007). Pictures of young caring. Young Carers Research Group: 21: University of Loughborough.
9. Australian Bureau of Statistics (ABS). (2004)Disability, ageing and carers 2003: Summary of findings Australia Cat. No. 4430.0. Canberra: Australian Bureau of Statistics.
10. Baago, S. (2005). Inside the developmental 'black box' of young carer: A literature review. Prepared for the Young Carers Initiative Niagara. Ontario: The Ontario Trillium Foundation.
11. Balen, R., Blyth, E., Calabretto, H., Fraser, C., Horrocks, C. & Manby, M. (2006). Involving children in health and social research: 'Human becomings' or 'active beings'?. Childhood, 13(1), 29-48.[CrossRef]
12. Becker, S., Aldridge, J. & Dearden, C. (1998). Young carers and their families. Oxford: Blackwell Science.
13. Becker, S. (2004). Carers. Research Matters, Special Issue, 5-10.
14. 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 Studies, 7(1), 23-50.
15. Ben-Arieh, A. (2005). Where are the children? Children's role in measuring and monitoring their well-being. Social Indicators Research, 74, 573-596. [CrossRef]
16. Bessant, J. (2006). The fixed age rule. Young people, consent and research ethics. Youth Studies Australia, 25(4), 50-57.
17. Bessell, S. (2008). Reflection 2. In Involving Children and young People in Research: Compendium of papers and reflections from a Think Tank co-hosted by the Australian Research Alliance for Children and Youth and the New South Wales Commission for Children and Young People on 11 November 2008 Sydney: NSW CCYP & ARACY.
18. Campbell, A. (2008). For their own good; Recruiting children for research. Childhood, 15(1), 30-49.[CrossRef]
19. Carers Association of Australia. (1996). Forfeiting their futures to care: A report on younger carers' contributions and needs. Canberra: Commonwealth of Australia.
20. Carers Association of Australia. (1997).Questions of responsibility: Children and caring in Australia. Canberra: Commonwealth of Australia.
21. Carroll-Lind, J., Chapman, J. W., Gregory, J. & Maxwell, G. (2006). The key to the gatekeepers: Passive consent and other ethical issues surrounding the rights of children to speak on issues that concern them. Child Abuse & Neglect, 30, 979-989.[CrossRef]
22. Cass, B., Smyth, C., Hill, T., Blaxland, M. & Hamilton, M. (2009). Young carers in Australia: Understanding the advantages and disadvantages of their care-giving. Social Policy Research Paper No. 38. Canberra: Australian Government Department of Families, Housing, Community Services and Indigenous Affairs.
23. Charlesworth, L. W. & Rodwell, M. K. (1997). Focus groups with children: A resource for sexual abuse prevention program evaluation. Child Abuse & Neglect, 21(12), 1205-1216.[CrossRef]
24. Christensen, P. (2004). Children's participation in ethnographic research: Issues of power and representation. Children & Society, 18(2), 165-176. [CrossRef]
25. Christensen, P. & James, A. (Eds.). (2008). Research with children: Perspectives and practices. New York: Routledge.
26. Corsaro, W. (1997). The sociology of childhood. Thousand Oaks, CA: Pine Forge Press.
27. Dawe, S., et al. (2006).Drug use in the family: Impacts and implications for children. ANCD Research Paper No. 13. Canberra: Australian National Council on Drugs.
28. Delgado, M. (2006). Designs and methods for youth-led research. London: Sage.
29. Duncan, R. E., Drew, S. E., Hodgson, J. & Sawyer, S. M. (2009). Is my mum going to hear this? Methodological and ethical challenges in qualitative health research with young. Social Science & Medicine, 69, 1691-1699.[CrossRef]
30. Duncan, (2008). Reflection 1. In Involving Children and young People in Research: Compendium of papers and reflections from a Think Tank co-hosted by the Australian Research Alliance for Children and Youth and the New South Wales Commission for Children and Young People on 11 November 2008 Sydney: NSW CCYP & ARACY.
31. Gaffney, M. (2007). A research study of young carers: The development of a recording tool for agencies to identify young carers. Wellington: Ministry of Health in association with Carers NZ.
32. Gray, B. & Robinson, C. (2009). Hidden children: Perspectives of professionals on young carers of people with mental health problems. Child Care in Practice, 15(2), 95-108.[CrossRef]
33. Green, J. B., Duncan, R. E., Barnes, G. L. & Oberklaid, F. (2003). Putting the 'informed' into 'consent': A matter of plain language. Journal of Paediatric Child Health, 39, 700-703.
34. [CrossRef]
35. Greene, S. & Hogan, D. (Eds.). (2005). Researching Children's Experience. London: Sage.
36. Hennesy, E. & Heary, C. (2005). Exploring children's views through focus groups. In S. Greene & D. Hogan (Eds.), Researching children's experience: Methods and approaches, London: Sage, 236-252.
37. Hill, M. (2006). Children's voices on ways of having a voice. Children's and young people's perspectives on methods used in research and consultation. Childhood, 13(1), 69-89.[CrossRef]
38. Hollander, J. A. (2004). The social contexts of focus groups. Journal of Contemporary Ethnography, 33(5), 602-637.[CrossRef]
39. Hunt, G., Levine, C. & Naiditch, L. (2005). Young caregivers in the US: Findings from a national survey. Bethesda, MD: National Alliance for Caregiving and the United Hospital Fund.
40. Hutchby, I. & Moran-Ellis, J. (Eds.). (1998). Children and social competence: Arenas of action. London: Falmer Press.
41. Jason, L. A., Pokorny, S. & Katz, R. (2001). Passive versus active consent: A case study in school settings. Journal of Community Psychology, 29(1), 53-68. [CrossRef]
42. Kellett, M. (2005). How to develop children as researchers: A step-by-step guide to teaching the research process. London: Sage.
43. Makrinotti, D. (1994). Conceptualisation of childhood in a welfare state: A critical reappraisal. In J. Qvortrup, M. Bardy, G. Sgritta & H. Winterberge (Eds.), Childhood matters: Social theory, practice and politics, Avebury: Ashgate, 267-284.
44. Mason, J. & Fattore, T. (Eds.). (2005). Children taken seriously: In theory, policy and practice. London: Jessica Kingsley Publishers.
45. Mauthner, M. (1997). Methodological aspects of collecting data from children: Lessons from three research projects. Children & Society, 11(1), 16-28. [CrossRef]
46. Mayall, B. (Ed.). (1994). Children's childhoods: Observed and experienced. London: Falmer Press.
47. Mayall, B. (2006). Child-adult relations in social space. In K. Tisdall, J. Davis, M. Hill & A. Prout (Eds.), Children, young people and social inclusion: participation for what? Bristol: The Policy Press, 199-216.
48. Moore, T. (2005a). Reading between the lines: Listening to children and young people about their experiences of caring in the ACT. Lyneham: Youth Coalition of the ACT.
49. Moore, T. (2005b). Young carers and education. Identifying the barriers to satisfactory education for young carers. Youth Studies Australia, 24(4), 50-55.
50. Moore, T. (2005c). More than words: Supporting young carers and their families. Lyneham: Youth Coalition of the ACT.
51. 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(6), 561-568.[CrossRef]
52. Moore, T., MacArthur, M. & Morrow, R. (2009). Attendance, achievement and participation: Young carers' experiences of school in Australia. Australian Journal of Education, 53(1), 5-18.
53. Morrow, R. (2005). A profile of known young carers and an identification and snapshot of those who are hidden. Perth: Curtin University of Technology and Carers WA.
54. Morrow, V. & Richards, M. (2002). The ethics of social research with children: An overview.Children & Society, 10, 90-105.
55. National Health and Medical Research Council (NHMRC). (2007). National statement on ethical conduct in human research. Canberra: Australian Government.
56. Noble-Carr, & DFaCS. (2002a).Young carers research project: Background paper. A Carers Australia project. Canberra: Department of Family and Community Services.
57. Noble-Carr, D. & DFaCS. (2002b). Young carers research project: Final report. A Carers Australia project. Canberra: Department of Family and Community Services.
58. NSW Commission for Children and Young People. (2008). Consent as a source of selection bias and the need for a better approach process to manage it. In Involving Children and young People in Research: Compendium of papers and reflections from a Think Tank co-hosted by the Australian Research Alliance for Children and Youth and the New South Wales Commission for Children and Young People on 11 November 2008 Sydney: NSW CCYP & ARACY.
59. O'Connell, C., Finnerty, J. & Egan, O. (2008). Hidden voices: An exploratory study of young carers in Cork, research working paper 08/07. Dublin: Combat Poverty Agency.
60. O'Kane, C. (2008). The development of participatory techniques: Facilitating children's views about decisions which affect them. In P. Christensen & A. James (Eds.), Research with children: Perspectives and practices, London: Routledge, 125-155.
61. Pokorny, S. B., Jason, L. A., Schoeny, M. E., Townsend, S. M. & Curie, C. J. (2001). Do participation rates change when active consent procedures replace passive consent? Evaluation Review, 25(5), 567-580.[CrossRef]
62. Price, K. (1996). How do I get them to come? Interim report. Sydney: Interchange Respite Care NSW.
63. Prout, A. & James, A. (1997). A new paradigm for the sociology of childhood? Provenance, promise and problems. In A. James & A. Prout (Eds.), Constructing and reconstructing childhood: Contemporary issues in the sociological study of childhood. London: Falmer Press.
64. Punch, S. (2002). Interviewing strategies with young people: The 'secret box', stimulus material and task-based activities. Children & Society, 16, 45-56. [CrossRef]
65. Sanci, L. A., Sawyer, S. M., Weller, P. J., Bond, L. M. & Patton, G. C. (2004). Youth health research ethics: time for a mature-minor clause? Medical Journal of Australia, 180, 336-338.
66. Scott, J. (2008). Children as respondents: The challenge for quantitative methods. In P. Christensen & A. James (Eds.), Research with children: Perspectives and practices (2nd Edition). New York: Routledge.
67. Skolnick, A. (Ed.). (1976). Rethinking childhood: Perspectives on development and society. Boston: Little Brown and Company.
68. Smith, M. W. (1995). Ethics in focus groups: A few concerns. Qualitative Health Research, 5, 478-486.[CrossRef]
69. Smyth, C., Blaxland, M. & Cass, B. (Forthcoming). '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.
70. Smyth, C., Cass, B. & Hill, T. (Forthcoming). Children and young people as active agents in caregiving: Agency and constraint. Children and Youth Services Review.
71. Spriggs, M. P. & Gillam, L. H. (2008). Consent in paediatric research: An evaluation of the guidance provided in the 2007 NHMRC National statement on ethical conduct in human research. Medical Journal of Australia, 1888(6), 360-362.
72. Thomas, N., Stainton, T., Jackson, S., Cheung, W. Y., 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.[CrossRef]
73. Thomas, N. & O'Kane, C. (1998). The ethics of participatory research with children. Children & Society, 12, 336-348. [CrossRef]
74. Tigges, B. B. (2003). Parental consent and adolescent risk behavior research. Journal of Nursing Scholarship, 35(3), 283-289.[CrossRef]
75. Warren, J. (2007). Young carers: Conventional or exaggerated levels of domestic and caring tasks. Children & Society, 21, 136-146.
76. Wierenga, A. (2003). Sharing a new story: Young people in decision making. foundation for young Australians. Melbourne: Youth Research Centre, University of Melbourne.
77. Wyn, J. (2004). Becoming Adult in the 2000s: New transitions and new careers. Family Matters, 68, 6-12.
78. Youth Affairs Council of Victoria Inc. (YACVic). (2007). Youth voice: Peer research into youth transitions. Melbourne Retrieved from http://www.bsl.org.au/pdfs/Youth_Voice_Peer_Research_into_Youth_Transitions_2007_2.pdf.
79. Zelizer, V. (1985). Pricing the priceless child: The changing social value of children. Princeton, NJ: Princeton University Press.