After a child's acquired brain injury (ABI): An ethnographic study of being a parent

Article type: Research Article

Authors: Rashid, Marghalara^{a; *} | Goez, Helly R.^{b; c} | Caine, Vera^d | Yager, Jerome Y.^{b; c} | Joyce, Anthony S.^e | Newton, Amanda S.^{b; e}

Affiliations: [a] Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, Alberta, Canada | [b] Department of Pediatrics, Faculty of Medicine & Dentistry, University of Alberta, Edmonton, Alberta, Canada | [c] Division of Pediatric Neurology, Department of Pediatrics, Faculty of Medicine & Dentistry, University of Alberta, Edmonton, Alberta, Canada | [d] Faculty of Nursing, University of Alberta, Edmonton, Alberta, Canada | [e] Department of Psychiatry, Faculty of Medicine & Dentistry, University of Alberta, Edmonton, Alberta, Canada

Correspondence: [*] Corresponding author: Marghalara Rashid, Room 5-017A, Edmonton Clinic Health Academy (ECHA), 11405-87 Avenue, Edmonton, Alberta, T6G 1C9, Canada. Tel.: +1 780 248 1974; E-mail:marghala@ualberta.ca

Abstract: PURPOSE: To explore the meanings associated with being a parent of a child with an aquired brain injury (ABI). METHODS: An ethnographic study was conducted with parents of children aged 3 to 10 years who had acquired a severe brain injury. Purposeful sampling was used to recruit parents from the Glenrose Rehabilitation Hospital in Edmonton, Alberta. Data collection involved participant observation, fieldwork and semi-structured interviews. Field notes and interviews transcriptions were analysed using a thematic analysis framework and informed by symbolic interactionism theory. RESULTS: Six parent dyads (mothers and fathers) and 4 mothers participated in the study.Parents' meanings of `parenting' a child with severe brain injury were shaped by the injury, wide range of familial dynamics, and interactions. Six main themes related to parental meanings emerged from our data: (1) Getting `back to normal'; (2) Relying on a support system; (3) Worrying something bad may happen after the injury; (4) Going through a range of emotions following the injury; (5) Changing family dynamics after the injury; and (6) Ongoing performativity. CONCLUSION: Parents' meanings of `parenting' a child are extensively impacted by their child's functioning after the ABI. Having a greater appreciation of these experiences may be beneficial for medical professionals.

Keywords: Ethnography, parental meanings, acquired brain injury, parenting, head injury, qualitative research

DOI: 10.3233/PRM-160403

Journal: Journal of Pediatric Rehabilitation Medicine, vol. 9, no. 4, pp. 303-313, 2016