906
Views
2
CrossRef citations to date
0
Altmetric
Research Papers

Acceptance, grief and adaptation amongst caregivers of partners with acquired brain injury: an interpretative phenomenological enquiry

ORCID Icon & ORCID Icon
Pages 2285-2294 | Received 07 Feb 2020, Accepted 23 Sep 2020, Published online: 12 Oct 2020

References

  • Headway.org.uk [Internet].  Nottingham (UK): Headway UK; 2019 [cited 2019 Nov 18]. Available from: https://www.headway.org.uk/
  • Gorgoraptis N, Zaw-Linn J, Feeney C, et al. Cognitive impairment and health-related quality of life following traumatic brain injury. NeuroRehabilitation. 2019;44(3):321–331.
  • Salas CE, Casassus M, Rowlands L, et al. “Relating through sameness”: a qualitative study of friendship and social isolation in chronic traumatic brain injury. Neuropsychol Rehabil. 2018;28(7):1161–1178.
  • Acquired Brain Injury and Mental Capacity Act Interest Group. 2014. Acquired brain injury and mental capacity. Available from: http://www.babicm.org/uploads/doh-mca-abi-17-09-14.pdf
  • Kreutzer JS, Marwitz JH, Godwin EE, et al. Practical approaches to effective family intervention after brain injury. J Head Trauma Rehabil. 2010;25(2):113–120.
  • Penna S, Novack TA, Carlson N, et al. Residence following traumatic brain injury: a longitudinal study. J Head Trauma Rehabil. 2010;25(1):52–60.
  • Elbaum J. Acquired brain injury and the family: challenges and interventions. In: Elbaum J, editor. Acquired brain injury: an integrative neuro-rehabilitation approach. 2nd ed. Basel (Switzerland): Springer; 2019. p. 335–347.
  • Lefebvre H, Cloutier G, Levert MJ. Perspectives of survivors of traumatic brain injury and their caregivers on long-term social integration. Brain Inj. 2008;22(7–8):535–543.
  • Godwin E, Lukow IIH, Lichiello S. Promoting resilience following traumatic brain injury: application of an interdisciplinary, evidence‐based model for intervention. Fam Relat. 2015;64(3):347–362.
  • Kreutzer JS, Mills A, Marwitz JH. Ambiguous loss and emotional recovery after traumatic brain injury. J Fam Theory Rev. 2016;8(3):386–397.
  • McIntyre M, Ehrlich C, Kendall E. Informal care management after traumatic brain injury: perspectives on informal carer workload and capacity. Disabil Rehabil. 2020;42(6):754–762.
  • Duff D. Family concerns and responses following a severe traumatic brain injury: a grounded theory study. Axon. 2002;24(2):14–22.
  • Engström Å, Söderberg S. Transition as experienced by close relatives of people with traumatic brain injury. J Neurosci Nurs. 2011;43(5):253–260.
  • Townshend J, Norman A. The secondary impact of traumatic brain injury: an interpretative phenomenological analysis of the experiences of family and friends. Fam J. 2018;26(1):77–85.
  • Jumisko E, Lexell J, Söderberg S. Living with moderate or severe traumatic brain injury: The meaning of family members’ experiences. J Fam Nurs. 2007;13(3):353–369.
  • Nalder E, Fleming J, Cornwell P, et al. Linked lives: the experiences of family caregivers during the transition from hospital to home following traumatic brain injury. Brain Impair. 2012;13(1):108–122.
  • Kratz AL, Sander AM, Brickell TA, et al. Traumatic brain injury caregivers: a qualitative analysis of spouse and parent perspectives on quality of life. Neuropsychol Rehabil. 2017;27(1):16–37.
  • Vogler J, Klein A, Bender A. Long-term health-related quality-of-life in patients with acquired brain injury and their caregivers. Brain Inj. 2014;28(11):1381–1388.
  • Chronister J, Johnson ET, Chan F, et al. Positive person–environment factors as mediators of the relationship between perceived burden and quality of life of caregivers for individuals with traumatic brain injuries. Rehabil Couns Bull. 2016;59(4):235–246.
  • Anderson MI, Parmenter TR, Mok M. The relationship between neurobehavioural problems of severe traumatic brain injury (TBI), family functioning and the psychological well-being of the spouse/caregiver: path model analysis. Brain Inj. 2002;16(9):743–757.
  • Lond BJ, Williamson IR. “Stuck in a loop of fear”: a phenomenological exploration of carers’ experiences supporting a spouse with acquired brain injury. Disabil Rehabil. 2018;40(24):2907–2915.
  • Verhaeghe S, Defloor T, Grypdonck M. Stress and coping among families of patients with traumatic brain injury: a review of the literature. J Clin Nurs. 2005;14(8):1004–1012.
  • Jackson D, Turner-Stokes L, Murray J, et al. Acquired brain injury and dementia: a comparison of carer experiences. Brain Inj. 2009;23(5):433–444.
  • Marwit SJ, Kaye PN. Measuring grief in caregivers of persons with acquired brain injury. Brain Inj. 2006;20(13–14):1419–1429.
  • Jackson D. Acquired brain injury: impact on carers. London (UK): Department of Health; 2006.
  • Smith J, Smith D. No map, no guide. Family caregivers’ perspectives on their journeys through the system. Care Manag J. 2000;2(1):27–33.
  • Dillahunt-Aspillaga C, Jorgensen-Smith T, Ehlke S, et al. Traumatic brain injury: unmet support needs of caregivers and families in Florida. PLoS One. 2013;8(12):e82896.
  • Smeets SM, van Heugten CM, Geboers JF, et al. Respite care after acquired brain injury: the well-being of caregivers and patients. Arch Phys Med Rehabil. 2012;93(5):834–841.
  • Mbakile-Mahlanza L, Manderson L, Ponsford J. The experience of traumatic brain injury in Botswana. Neuropsychol Rehabil. 2015;25(6):936–958.
  • Gan C, Gargaro J, Brandys C, et al. Family caregivers’ support needs after brain injury: a synthesis of perspectives from caregivers, programs, and researchers. NeuroRehabilitation. 2010;27(1):5–18.
  • Kitter B, Sharman R. Caregivers’ support needs and factors promoting resiliency after brain injury. Brain Inj. 2015;29(9):1082–1093.
  • Leith KH, Phillips L, Sample PL. Exploring the service needs and experiences of persons with TBI and their families: the South Carolina experience. Brain Inj. 2004;18(12):1191–1208.
  • McDermott GL, McDonnell AM. Acquired brain injury services in the Republic of Ireland: experiences and perceptions of families and professionals. Brain Inj. 2014;28(1):81–91.
  • Gosling J, Oddy M. Rearranged marriages: Marital relationships after head injury. Brain Inj. 1999;13(10):785–796.
  • Kieffer-Kristensen R, Teasdale TW. Parental stress and marital relationships among patients with brain injury and their spouses. NRE. 2011;28(4):321–330.
  • Godwin EE, Chappell B, Kreutzer J. Relationships after TBI: a grounded research study. Brain Inj. 2014;28(4):398–413.
  • Landau J, Hissett J. Mild traumatic brain injury: impact on identity and ambiguous loss in the family. Fam Syst Health. 2008;26(1):69–85.
  • Bodley-Scott S, Riley G. How partners experience personality change after traumatic brain injury – its impact on their emotions and their relationship. Brain Impair. 2015;16(3):205–220.
  • Wood RL, Yurdakul LK. Change in relationship status following traumatic brain injury. Brain Inj. 1997;11(7):491–502.
  • Smith JA, Flowers P, Larkin M. Interpretative phenomenological analysis: theory, method and research. London (UK): Sage Publications; 2009.
  • Howitt D, Cramer D. Introduction to research methods in psychology. 5th ed. Harlow (UK): Pearson Education Limited; 2017.
  • Smith JA, Osborn M. Interpretative phenomenological analysis. In: Smith JA, editor. Qualitative psychology: a practical guide to research methods. 2nd ed. London (UK): SAGE Publications; 2008. p. 53–80.
  • Holstein JA, Gubrium JF. The constructionist analytics of interpretative practice. In: Denzin NK, Lincoln YS, editors. The Sage handbook of qualitative research. 4th ed. London (UK): Sage Publications; 2011. p. 341–358.
  • Boss P. Ambiguous loss: learning to live with unresolved grief. London (UK): Harvard University Press; 2000.
  • Bar-David G. Three phase development of caring capacity in primary caregivers for relatives with Alzheimer’s disease. J Aging Stud. 1999;13(2):177–197.
  • Karagiorgou O, Evans JJ, Cullen B. Post-traumatic growth in adult survivors of brain injury: a qualitative study of participants completing a pilot trial of brief positive psychotherapy. Disabil Rehabil. 2018;40(6):655–659.
  • Major G. Family caregivers of people with an acquired brain injury: Attributions of challenging behaviour and psychological interventions for emotional wellbeing [dissertation]. Birmingham (UK): University of Birmingham; 2018.
  • Williams J, Vaughan F, Huws J, et al. Brain injury spousal caregivers’ experiences of an acceptance and commitment therapy (ACT) group. Social Care Neurodisabil. 2014;5(1):29–40.
  • Roland KP, Jenkins ME, Johnson AM. An exploration of the burden experienced by spousal caregivers of individuals with Parkinson’s disease. Mov Disord. 2010;25(2):189–193.
  • Välimäki T, Vehviläinen‐Julkunen K, Pietilä AM. Diaries as research data in a study on family caregivers of people with Alzheimer’s disease: methodological issues. J Adv Nurs. 2007;59(1):68–76.
  • Williamson I. ‘I am everything but myself’: exploring visual voice accounts of single mothers caring for a daughter with Rett syndrome. Qual Res in Psychol. 2019;16(4):566–590.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.