Researching experiences of childhood brain injury: co-constructing knowledge with children through arts-based research methods

References

• Hammell KW. Using qualitative research to inform the client-centred evidence-based practice of occupational therapy. Br J Occup Ther. 2001;64:228–234.
   Google Scholar
• Morrow V, Richards M. The ethics of social research with children: an overview. Child Soc. 1996;10:90–105.
   Google Scholar
• Punch S. Research with children: the same or different from research with adults? Childhood. 2002;9:321–341.
   Web of Science ®Google Scholar
• Morrow V. Ethical dilemmas in research with children and young people about their social environments. Child Geogr. 2008;6:49–61.
   Web of Science ®Google Scholar
• Sandelowski M. Theory unmasked: the uses and guises of theory in qualitative research. Res Nurs Health. 1993;16:213–218.
   PubMed Web of Science ®Google Scholar
• Green J, Thorogood N. Qualitative methodology and health research. In: J Green, N Thorogood, editors. Qualitative methods for health research. 3rd edition. London (UK): SAGE Publications; 2009. p. 3–34.
   Google Scholar
• Carter B, Ford K. Researching children’s health experiences: the place for participatory, child-centered, arts-based approaches. Res Nurs Health. 2013;36:95–107.
   PubMed Web of Science ®Google Scholar
• Lincoln YS, Lynham SA, Guba EG. Paradigmatic controversies, contradictions, and emerging confluences, revisited. In: NK Denzin, YS Lincoln, editors. SAGE handbook of qualitative research. 4th edition. Thousand Oaks (CA): SAGE Publications; 2011. p. 97–128.
   Google Scholar
• Boylan A-M, Linden M, Alderdice F. Interviewing children with acquired brain injury. J Early Child Res. 2009;7:264–282.
   Google Scholar
• O’Keeffe F, Ganesan V, King J, et al. Quality-of-life and psychosocial outcome following childhood arterial ischaemic stroke. Brain Inj. 2012;26:1072–1083.
   PubMed Web of Science ®Google Scholar
• Anderson V, Le Brocque R, Iselin G, et al. Adaptive ability, behavior and quality of life pre and posttraumatic brain injury in childhood. Disabil Rehabil. 2012;34:1639–1647.
   PubMed Web of Science ®Google Scholar
• Moran LM, Bigler E, Dennis M, et al. Social problem-solving and social adjustment in paediatric traumatic brain injury. Brain Inj. 2015;29:1682–1690.
   PubMed Web of Science ®Google Scholar
• Ross KA, McMillan T, Kelly T, et al. Friendship, loneliness and psychosocial functioning in children with traumatic brain injury. Brain Inj. 2011;25:1206–1211.
   PubMed Web of Science ®Google Scholar
• Limond J, Dorris L, McMillan TM. Quality of life in children with acquired brain injury: parent perspectives 1–5 years after injury. Brain Inj. 2009;23:617–622.
   PubMed Web of Science ®Google Scholar
• Silberg T, Tal-Jacobi D, Levav M, et al. Parents and teachers reporting on a child’s emotional and behavioural problems following severe traumatic brain injury: the moderating effect of time. Brain Inj. 2015;29:481–489.
   PubMed Web of Science ®Google Scholar
• Viguier D, Dellatolas G, Gasquet I, et al. A psychological assessment of adolescent and young adult inpatients after traumatic brain injury. Brain Inj. 2001;15:263–271.
   PubMed Web of Science ®Google Scholar
• Pastore V, Colombo K, Maestroni D, et al. Psychological problems, self-esteem and body dissatisfaction in a sample of adolescents with brain lesions: a comparison with a control group. Brain Inj. 2015;29:937–945.
   PubMed Web of Science ®Google Scholar
• Gagnon I, Swaine B, Friedman D, et al. Exploring children’s self-efficacy related to physical activity performance after a mild traumatic brain injury. J Head Trauma Rehabil. 2005;20:436–449.
   PubMed Web of Science ®Google Scholar
• Law M, Anaby D, DeMatteo C, et al. Participation patterns of children with acquired brain injury. Brain Inj. 2011;25:587–595.
   PubMed Web of Science ®Google Scholar
• Bedell GM, Dumas HM. Social participation of children and youth with acquired brain injuries discharged from inpatient rehabilitation: a follow-up study. Brain Inj. 2004;18:65–82.
   PubMed Web of Science ®Google Scholar
• van Tol E, Gorter JW, DeMatteo C, et al. Participation outcomes for children with acquired brain injury: a narrative review. Brain Inj. 2011;25:1279–1287.
   PubMed Web of Science ®Google Scholar
• Gagnon I, Swaine B, Forget R. Using activity diaries to measure childrenʼs and adolescentsʼ compliance with activity restrictions after mild traumatic brain injury. J Head Trauma Rehabil. 2009;24:355–362.
   PubMed Web of Science ®Google Scholar
• Laffond C, Dellatolas G, Alapetite C, et al. Quality‐of‐life, mood and executive functioning after childhood craniopharyngioma treated with surgery and proton beam therapy. Brain Inj. 2012;26:270–281.
   PubMed Web of Science ®Google Scholar
• Green L, Godfrey C, Soo C, et al. Agreement between parent‐adolescent ratings on psychosocial outcome and quality‐of‐life following childhood traumatic brain injury. Dev Neurorehabil. 2012;15:105–113.
   PubMed Web of Science ®Google Scholar
• Gagnon I, Swaine B, Champagne F, et al. Perspectives of adolescents and their parents regarding service needs following a mild traumatic brain injury. Brain Inj. 2008;22:161–173.
   PubMed Web of Science ®Google Scholar
• Swaine BR, Gagnon I, Champagne F, et al. Identifying the specific needs of adolescents after a mild traumatic brain injury: a service provider perspective. Brain Inj. 2008;22:581–588.
   PubMed Web of Science ®Google Scholar
• Gauvin-Lepage J, Lefebvre H. Social inclusion of persons with moderate head injuries: the points of view of adolescents with brain injuries, their parents and professionals. Brain Inj. 2010;24:1087–1097.
   PubMed Web of Science ®Google Scholar
• Bogan AM, Livingston MG, Parry-Jones WL, et al. The experiential impact of head injury on adolescents: individual perspectives on long-term outcome. Brain Inj. 1997;11:431–443.
   PubMed Web of Science ®Google Scholar
• Sharp NL, Bye RA, Llewellyn GM, et al. Fitting back in: adolescents returning to school after severe acquired brain injury. Disabil Rehabil. 2006;28:767–778.
   PubMed Web of Science ®Google Scholar
• Mealings M, Douglas J. "School’s a big part of your life … ": adolescent perspectives of their school participation following traumatic brain injury. Brain Impair. 2010;11;1–16.
   Web of Science ®Google Scholar
• Roscigno CI, Swanson KM. Parents’ experiences following children’s moderate to severe traumatic brain injury: a clash of cultures. Qual Health Res. 2011;21:1413–1426.
   PubMed Web of Science ®Google Scholar
• Mealings M, Douglas J, Olver J. Considering the student perspective in returning to school after TBI: a literature review. Brain Inj. 2012;26:1165–1176.
   PubMed Web of Science ®Google Scholar
• Qvortrup J. Placing children in the division of labour. In: P Close, R Collins, editors. Family and economy in modern society. London (UK): Macmillan; 1985. p. 129–145.
   Google Scholar
• James A, Prout A. Constructing and reconstructing childhood: contemporary issues in the sociological study of childhood. New York (NY): Falmer Press; 1997.
   Google Scholar
• James A, Jenks C, Prout A. Theorizing childhood. London (UK): Polity Press; 1998.
   Google Scholar
• Matthews SH. A window on the “new” sociology of childhood. Sociol Compass. 2007;1:322–334.
   Google Scholar
• Docherty S, Sandelowski M. Focus on qualitative methods: interviewing children. Res Nurs Health. 1999;22:177–185.
   PubMed Web of Science ®Google Scholar
• Gibson JE. Interviews and focus groups with children: methods that match children’s developing competencies. J Fam Theory Rev. 2012;4:148–159.
   Google Scholar
• Kitzinger J. Who are you kidding? children, power and the struggle against sexual abuse. In: A James, A Prout, editors. Constructing and reconstructing childhood: contemporary issues in the study of childhood. New York (NY): Falmer Press; 1990. p. 157–183.
   Google Scholar
• Balen R, Blyth E, Calabretto H, et al. Involving children in health and social research: ‘human becomings’ or ‘active beings’? Childhood. 2006;13:29–48.
   Web of Science ®Google Scholar
• Kirk S. Methodological and ethical issues in conducting qualitative research with children and young people: a literature review. Int J Nurs Stud. 2007;44:1250–1260.
   PubMed Web of Science ®Google Scholar
• James A, Prout A. Constructing and reconstructing childhood: new directions in the sociological study of childhood. Oxford (UK): Routledge; 1990.
   Google Scholar
• Brady G, Lowe P, Olin Lauritzen S. Connecting a sociology of childhood perspective with the study of child health, illness and wellbeing: introduction. Sociol Health Illn. 2015;37:173–183.
   PubMed Web of Science ®Google Scholar
• Kortesluoma R-L, Hentinen M, Nikkonen M. Conducting a qualitative child interview: methodological considerations. J Adv Nurs. 2003;42:434–441.
   PubMed Web of Science ®Google Scholar
• Grover S. Why won’t they listen to us?: on giving power and voice to children participating in social research. Childhood. 2004;11:81–93.
   Web of Science ®Google Scholar
• Gladstone BM, Boydell KM, McKeever P. Recasting research into children’s experiences of parental mental illness: beyond risk and resilience. Soc Sci Med. 2006;62:2540–2550.
   PubMed Web of Science ®Google Scholar
• Teachman G, Gibson BE. Children and youth with disabilities: innovative methods for single qualitative interviews. Qual Health Res. 2013;23:264–274.
   PubMed Web of Science ®Google Scholar
• Warming H. "How can you know? you’re not a foster child": dilemmas and possibilities of giving voice to children in foster care. Children Youth Environ. 2006;16;28–50.
   Google Scholar
• Theron L. Picturing research: drawing as visual methodology. Rotterdam (NL): Sense Publishers; 2011.
   Google Scholar
• Teachman G, Mistry B, Gibson BE. Doing qualitative research with people who have communication impairments. SAGE Res Methods Cases. 2014.
   Google Scholar
• Gibson BE, King G, Kushki A, et al. A multi-method approach to studying activity setting participation: integrating standardized questionnaires, qualitative methods and physiological measures. Disabil Rehabil. 2014;36:1652–1660.
   PubMed Web of Science ®Google Scholar
• Gladstone BM, Stasiulis E. Digital storytelling method. In: Liamputtong P, editor. Handbook of research methods in health social sciences. Singapore (SG): Springer Singapore; 2017. p. 1–17.
   Google Scholar
• Teachman G, McDonough P, Macarthur C, et al. A critical dialogical methodology for conducting research with disabled youth who use augmentative and alternative communication. Qual Inq. 2018;24:35–44.
   Web of Science ®Google Scholar
• Fraser KD, al Sayah F. Arts-based methods in health research: a systematic review of the literature. Arts Health. 2011;3:110–145.
   Google Scholar
• Boydell K, Gladstone B, Volpe T, et al. The production and dissemination of knowledge: a scoping review of arts-based health research. Forum Qual Soc Res. 2012;13.
   Google Scholar
• Guillemin M. Embodying heart disease through drawings. Health Interdiscip J Soc Study Health Illn Med. 2004;8:223–239.
   Web of Science ®Google Scholar
• Mitchell C, Theron L, Stuart J, et al. Drawing as research method. Picturing research: drawing as visual methodology. Rotterdam (NL): Sense Publishers; 2011. p. 19–36.
   Google Scholar
• Finley S. Arts based inquiry: performing revolutionary pedagogy. In: NK Denzin, YS Lincoln, editors. SAGE handbook of qualitative research. 3rd edition. Thousand Oaks (CA): SAGE Publications, Ltd.; 2005. p. 681–694.
   Google Scholar
• Hartman LR, Tibbles A, Paniccia A, et al. A qualitative synthesis of families’ and students’ hospital-to-school transition experiences following acquired brain injury. Glob Qual Nurs Res. 2015;1–22.
   Web of Science ®Google Scholar
• Cauduro MT, Birk M, Wachs P. Arts-based investigation: a Brazilian story. Forum Qual Soc Res. 2009;10.
   Google Scholar
• Davy C, Magalhães LV, Mandich A, et al. Aspects of the resilience and settlement of refugee youth: a narrative study using body maps. Cad Ter Ocup UFSCar. 2014;22:231–241.
   Google Scholar
• Coad J. Using art-based techniques in engaging children and young people in health care consultations and/or research. J Res Nurs. 2007;12:487–497.
   Google Scholar
• Yohani SC. Creating an ecology of hope: arts-based interventions with refugee children. Child Adolesc Soc Work J. 2008;25:309–323.
   Google Scholar
• Driessnack M, Furukawa R. Arts-based data collection techniques used in child research: arts-based data collection techniques used in child research. J Spec Pediatr Nurs. 2012;17:3–9.
   PubMed Web of Science ®Google Scholar
• Guillemin M. Understanding illness: using drawings as a research method. Qual Health Res. 2004;14:272–289.
   PubMed Web of Science ®Google Scholar
• Wiebe DJ, Comstock RD, Nance ML. Concussion research: a public health priority. Inj Prev. 2011;17:69–70.
   PubMed Web of Science ®Google Scholar
• Ontario Neurotrauma Foundation. Guidelines for concussion/mTBI and persistent symptoms. 2nd edition. Toronto (ON): Ontario Neurotrauma Foundation; 2014.
   Google Scholar
• Clark A. Young children as protagonists and the role of participatory, visual methods in engaging multiple perspectives. Am J Community Psychol. 2010;46:115–123.
   PubMed Web of Science ®Google Scholar
• Literat I. “A pencil for your thoughts”: participatory drawing as a visual research method with children and youth. Int J Qual Methods. 2013;12:84–98.
   Web of Science ®Google Scholar
• Cheung MMY, Saini B, Smith L. Using drawings to explore patients' perceptions of their illness: a scoping review. J Multidiscip Healthc. 2016;9;631–646.
   PubMed Web of Science ®Google Scholar
• Rose G. Visual methodologies: an introduction to researching with visual materials. 4th edition. London (UK): SAGE Publications Ltd; 2016.
   Google Scholar
• Kvale, S. The plurality of interpretations. InterViews: an introduction to qualitative research interviewing. Thousand Oaks (CA): SAGE; 1996. p. 210–228.
   Google Scholar
• Coffey A, Atkinson P. Concepts and coding. In: Making sense of qualitative data: complementary research strategies. London (UK): SAGE Publications, Ltd.; 1996. p. 26–53.
   Google Scholar
• Becker HS. Chapter 4, Concepts. In: Tricks of the trade: how to think about your research while you're doing it. Chicago (IL): University of Chicago Press; 1998. p. 109–145.
   Google Scholar
• Guillemin M, Gillam L. Ethics, reflexivity, and “ethically important moments” in research. Qual Inq. 2004;10:261–280.
   Web of Science ®Google Scholar
• Strega S. The view from the poststructural margins: epistemology and methodology reconsidered. In: L Brown, S Strega, editors. Research as resistance: critical, indigenous, and anti-oppressive approaches. Toronto, (ON): Canadian Scholar Press; 2005. p. 199–236.
   Google Scholar
• Cheek, J. Chapter 2, Situating postmodern thought. In: Postmodern and poststructural approaches to nursing research. London (UK): SAGE Publications, Ltd.; 2000. p. 17–64.
   Google Scholar
• Einarsdottir J, Dockett S, Perry B. Making meaning: children’s perspectives expressed through drawings. Early Child Dev Care. 2009;179:217–232.
   Google Scholar
• Christensen PH. Children’s participation in ethnographic research: issues of power and representation. Child Soc. 2004;18:165–176.
   Google Scholar
• Eldén S. Inviting the messy: drawing methods and "children’s voices." Childhood. 2013;20:66–81.
   Web of Science ®Google Scholar
• Thomas N, O’Kane C. Discovering what children think: connections between research and practice. Br J Soc Work. 2000;30:819–835.
   Web of Science ®Google Scholar
• Yates L. The story they want to tell, and the visual story as evidence: young people, research authority and research purposes in the education and health domains. Vis Stud. 2010;25:280–291.
   Web of Science ®Google Scholar
• Liamputtong P, Rumbold J, editors. Knowing differently: arts-based and collaborative research methods. New York (NY): Nova Science Publishers; 2008.
   Google Scholar
• Eakin JM, Mykhalovskiy E. Reframing the evaluation of qualitative health research: reflections on a review of appraisal guidelines in the health sciences. J Eval Clin Pract. 2003;9:187–194.
   PubMed Web of Science ®Google Scholar
• Gladstone B, Volpe T, Stasiulis E, et al. Judging quality in arts-based health research: the case of the ugly baby. Int J Creative Arts Interprof Practice. 2012.
   Google Scholar
• Parsons JA, Gladstone BM, Gray J, et al. Re-conceptualizing “impact” in art-based health research. J Appl Arts Health. 2017;8:155–173.
   Google Scholar