“Stuck in a loop of fear”: a phenomenological exploration of carers’ experiences supporting a spouse with acquired brain injury

References

• Headway.org.uk [Internet]. Nottingham (UK): Headway UK; 2017; [cited 2017 May 18]. Available from: https://www.headway.org.uk/
   Google Scholar
• Acquired Brain Injury and Mental Capacity Act Interest Group. Acquired brain injury and mental capacity. UK: Acquired Brain Injury and Mental Capacity Act Interest Group; 2014.
   Google Scholar
• Walsh RS, Fortune DG, Gallagher S, et al. Acquired brain injury: combining social psychological and neuropsychological perspectives. Health Psychol Rev. 2014;8:458–472.
   PubMed Web of Science ®Google Scholar
• Kreutzer JS, Marwitz JH, Godwin EE, et al. Practical approaches to effective family intervention after brain injury. J Head Trauma Rehabil. 2010;25:113–120.
   PubMed Web of Science ®Google Scholar
• Douglas JM, Spellacy FJ. Correlates of depression in adults with severe traumatic brain injury and their carers. Brain Inj. 2000;14:71–88.
   PubMed Web of Science ®Google Scholar
• Grace JJ, Kinsella EL, Muldoon OT, et al. Post-traumatic growth following acquired brain injury: a systematic review and meta-analysis. Front Psychol. 2015;6:1162.
   PubMed Web of Science ®Google Scholar
• 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;28:1381–1388.
   PubMed Web of Science ®Google Scholar
• 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;59:235–246.
   Web of Science ®Google Scholar
• McPherson KM, Pentland B, McNaughton HK. Brain injury – the perceived health of carers. Disabil Rehabil. 2000;22:683–689.
   PubMed Web of Science ®Google Scholar
• Jackson D, Turner-Stokes L, Murray J, et al. Acquired brain injury and dementia: a comparison of carer experiences. Brain Inj. 2009;23:433–444.
   PubMed Web of Science ®Google Scholar
• Marwit SJ, Kaye PN. Measuring grief in caregivers of persons with acquired brain injury. Brain Inj. 2006;20:1419–1429.
   PubMed Web of Science ®Google Scholar
• 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:e82896.
   PubMed Web of Science ®Google Scholar
• Kitter B, Sharman R. Caregivers’ support needs and factors promoting resiliency after brain injury. Brain Inj. 2015;29:1082–1093.
   PubMed Web of Science ®Google Scholar
• Mbakile-Mahlanza L, Manderson L, Ponsford J. The experience of traumatic brain injury in Botswana. Neuropsychol Rehabil. 2015;25:936–958.
   PubMed Web of Science ®Google Scholar
• McDermott GL, McDonnell AM. Acquired brain injury services in the Republic of Ireland: experiences and perceptions of families and professionals. Brain Inj. 2014;28:81–91.
   PubMed Web of Science ®Google Scholar
• Jackson D. Acquired brain injury: impact on carers. London: Department of Health (UK); 2006.
   Google Scholar
• Lefebvre H, Cloutier G, Levert MJ. Perspectives of survivors of traumatic brain injury and their caregivers on long-term social integration. Brain Inj. 2008;22:535–543.
   PubMed Web of Science ®Google Scholar
• Moore H, Gillespie A. The caregiving bind: concealing the demands of informal care can undermine the caregiving identity. Soc Sci Med. 2014;116:102–109.
   PubMed Web of Science ®Google Scholar
• Chronister J, Chan F. A stress process model of caregiving for individuals with traumatic brain injury. Rehabil Psychol. 2006;51:190–201.
   Web of Science ®Google Scholar
• Blais MC, Boisvert J. Psychological adjustment and marital satisfaction following head injury. Which critical personal characteristics should both partners develop? Brain Inj. 2007;21:357–372.
   PubMed Web of Science ®Google Scholar
• Wolters G, Stapert S, Brands I, et al. Coping following acquired brain injury: predictors and correlates. J Head Trauma Rehabil. 2011;26:150–157.
   PubMed Web of Science ®Google Scholar
• Calvete E, de Arroyabe EL. Depression and grief in Spanish family caregivers of people with traumatic brain injury: the roles of social support and coping. Brain Inj. 2012;26:834–843.
   PubMed Web of Science ®Google Scholar
• Brand C, Barry L, Gallagher S. Social support mediates the association between benefit finding and quality of life in caregivers. J Health Psychol. 2016;21:1126–1136.
   PubMed Web of Science ®Google Scholar
• 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;13:108–122.
   Web of Science ®Google Scholar
• Green TL, King KM. The trajectory of minor stroke recovery for men and their female spousal caregivers: literature review. J Adv Nurs. 2007;58:517–531.
   PubMed Web of Science ®Google Scholar
• Kieffer-Kristensen R, Teasdale TW. Parental stress and marital relationships among patients with brain injury and their spouses. Neurorehabilitation. 2011;28:321–330.
   PubMed Web of Science ®Google Scholar
• Wood RL, Yurdakul LK. Change in relationship status following traumatic brain injury. Brain Inj. 1997;11:491–502.
   PubMed Web of Science ®Google Scholar
• Spinelli E. The interpreted world: an introduction to phenomenological psychology. London (UK): SAGE Publications; 1989.
   Google Scholar
• Giorgi A, Giorgi B. Phenomenology. In: Smith JA, editor. Qualitative psychology: a practical guide to research methods. London (UK): SAGE Publications; 2003. p. 25–50.
   Google Scholar
• Howitt D, Cramer D. Introduction to research methods in psychology. 4th ed. Essex (UK): Pearson Education Limited; 2011.
   Google Scholar
• Smith JA, Flowers P, Larkin M. Interpretative phenomenological analysis: theory, method and research. London (UK): Sage Publications; 2009.
   Google Scholar
• Smith JA, Osborn M. Interpretative phenomenological analysis. In: Smith JA, editor. Qualitative psychology: a guide to research methods. London (UK): SAGE Publications; 2003. p. 51–80.
   Google Scholar
• Hellawell D. Inside-out: analysis of the insider–outsider concept as a heuristic device to develop reflexivity in students doing qualitative research. Teach High Educ. 2006;11:483–494.
   Web of Science ®Google Scholar
• Denzin NK, Lincoln YS. Handbook of qualitative research. California (USA): Sage Publications; 2000.
   Google Scholar
• Williams J, Vaughan F, Huws J, et al. Brain injury spousal caregivers’ experiences of an acceptance and commitment therapy (ACT) group. Soc Care Neurodisabil. 2014;5:29–44.
   Google Scholar
• Shaffer KM, Riklin E, Jacobs JM, et al. Mindfulness and coping are inversely related to psychiatric symptoms in patients and informal caregivers in the neuroscience ICU: implications for clinical care. Crit Care Med. 2016;44:2028–2036.
   PubMed Web of Science ®Google Scholar