Hostname: page-component-848d4c4894-ttngx Total loading time: 0 Render date: 2024-05-31T23:55:27.528Z Has data issue: false hasContentIssue false
  • English
  • Français

Humanising health and social care: What do family members of people with a severe acquired brain injury value most in service provision

Published online by Cambridge University Press:  14 April 2022

Mark Holloway  and
Caroline Ellis-Hill
Mark Holloway*
Affiliation:
Head First Assessment and Case Management Ltd, Hawkhurst, UK
Caroline Ellis-Hill
Affiliation:
Faculty Health and Social Sciences, Bournemouth University, Bournemouth, UK
*
*Corresponding author. Email: mark.holloway@head-first.org
Get access

Abstract

Introduction:

Family members living with relatives with severe acquired brain injury (ABI) face many challenges. Although this is recognised, service provision in the UK is poor and needs development.

Method:

In order to support innovative service delivery for family members, we reflect on the research carried out by the first author using a new perspective – a lifeworld humanising approach in order to consider (a) the dehumanising existential challenges facing family members of people living with severe ABI and (b) what family members most value in service delivery presented in humanising terms.

Findings:

Following ABI, family members may enter a parallel lifeworld (feeling separate from ‘usual’ life as it flows by) and face fundamental existential challenges of isolation, loss of agency, dislocation, loss of meaning and loss of personal journey. Family members have reported that service providers who are highly valued are those who act as ‘expert companions’. This role involves supporting families in some, if not all of the following (a) reaching across into the lifeworld of the family member and appreciating and validating what they are facing, (b) helping them make sense of their situation in terms which are meaningful to them and which they can explain to others, (c) through ABI expertise, supporting their relative through knowing their interests and needs and adapting the environment to suit these to help their relative to ‘settle’ and flourish, (d) supporting family members to share their life experiences – developing safe and trusting relationships, (e) having a humane, positive, creative and for some, a humorous approach, (f) being responsive to changing situations, (g) being available to call during times of worry or crisis and (h) help link with others and helpful networks.

Discussion:

It is suggested that the role and approach of companion may help family members regain some sense of their own life and their well-being.

Keywords

Acquired brain injuryhumanising practicelifeworldfamilyrelative service developmentisolationidentitycase managementexpert companion
Type
Clinical Practice: Current Opinion
Information
Brain Impairment , Volume 23 , Special Issue 1: Humanising Connections: Bringing people together in rehabilitation , March 2022 , pp. 134 - 142
Copyright
© The Author(s), 2022. Published by Cambridge University Press on behalf of Australasian Society for the Study of Brain Impairment

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Anderson, M. I., Simpson, G. K., & Morey, P. J. (2013). The impact of neurobehavioral impairment on family functioning and the psychological well-being of male versus female caregivers of relatives with severe traumatic brain injury: Multigroup analysis. Journal of Head Trauma Rehabilitation, 28(6), 453–463.CrossRefGoogle Scholar
Barnes, M., Bennet, E., & Etherington, J. (2018). Acquired brain injury and time for change: All Party Parliamentary Group on acquired brain injury report. UK: UKABIF.Google Scholar
Bowen, C., Yeates, G., & Palmer, S. (2018). A relational approach to rehabilitation: Thinking about relationships after brain injury. New York: Routledge.CrossRefGoogle Scholar
Brooks, N. (1991). The head-injured family. Journal of Clinical and Experimental Neuropsychology, 13(1), 155–188.CrossRefGoogle Scholar
Calhoun, L., & Tedeschi, R. (2006). Expert companions: Posttraumatic growth in clinical practice. In Calhoun, L. & Tedeschi, R. (Eds.), Handbook of posttraumatic growth: Research and practice. Mahwah, NJ: Lawrence Erlbaum Associates.Google Scholar
Calhoun, L. G., & Tedeschi, R. G. (2012). Posttraumatic growth in clinical practice. New York: Taylor and Francis.CrossRefGoogle Scholar
Ellis-Hill, C., Pound, C., & Galvin, K. (2021). Making the invisible more visible: Reflections on practice-based humanising lifeworld-led research – existential opportunities for supporting dignity, compassion and wellbeing. Scandinavian Journal of Caring Sciences, 3(6), 1–9. doi: 10.1111/scs.13013.Google Scholar
Fisher, A., Bellon, M., Lawn, S., & Lennon, S. (2020). Brain injury, behaviour support, and family involvement: Putting the pieces together and looking forward. Disability and Rehabilitation, 42(09), 1305–1315.CrossRefGoogle ScholarPubMed
Galvin, K., & Todres, L. (2013). Caring and well-being: A lifeworld approach. New York: Routledge.CrossRefGoogle Scholar
Gioia, G., Isquith, P., & Kenealy, L. (2008). Assessment of behavioral aspects of executive function. In Anderson, V., Jacobs, R. & Anderson, P. (Eds.), Executive functions and the frontal lobes: A lifespan perspective. New York: Taylor and Francis.Google Scholar
Holloway, M., Orr, D., & Clark-Wilson, J. (2019). Experiences of challenges and support among family members of people with acquired brain injury: A qualitative study in the UK. Brain Injury, 33(4), 401–411.CrossRefGoogle Scholar
Holloway, M., & Tasker, R. (2019). The experiences of relatives of people with acquired brain injury (ABI) of the condition and associated social and health care services. Journal of Long-Term Care, 2019, 99–110. doi: 10.31389/jltc.20.CrossRefGoogle Scholar
Holloway, M. (2017). Acquired brain injury: The lived experience of family members. Brighton: DSW, University of Sussex.Google Scholar
Karpa, J., Chernomas, W., Roger, K., & Heinonen, T. (2020). Families' experiences living with acquired brain injury: "Thinking Family" - A nursing pathway for family-centered care. Nursing Research and Practice, 2020(2), 8866534. doi: 10.1155/2020/8866534.CrossRefGoogle ScholarPubMed
Knox, L., Douglas, J. M., & Bigby, C. (2016). I won't be around forever": Understanding the decision-making experiences of adults with severe TBI and their parents. Neuropsychological Rehabilitation, 26(2), 236–260.CrossRefGoogle ScholarPubMed
Lezak, M. D. (1986). Psychological implications of traumatic brain damage for the patient’s family. Rehabilitation Psychology, 31(4), 241–250.CrossRefGoogle Scholar
McIntyre, M., Ehrlich, C., & Kendall, E. (2020). Informal care management after traumatic brain injury: Perspectives on informal carer workload and capacity. Disability and Rehabilitation, 42(6), 754–762.CrossRefGoogle Scholar
McMillan, T. M., Teasdale, G. M., & Stewart, E. (2012). Disability in young people and adults after head injury: 12-14 Year follow-up of a prospective cohort. Journal of Neurology, Neurosurgery and Psychiatry, 83(11), 1086–1091.CrossRefGoogle Scholar
Muenchberger, H., Kendeall, E., & Neal, R. (2008). Identity transition following traumatic brain injury: A dynamic process of contraction, expansion and tentative balance. Brain Injury, 22(12), 979–992.CrossRefGoogle ScholarPubMed
Norman, A., Holloway, M., Odumuyiwa, T., Kennedy, M., Forrest, H., Suffield, F., & Dicks, H. (2020). Accepting what we do not know: A need to improve professional understanding of brain injury in the UK. Health and Social Care in the Community, 28(6), 2037–2049.CrossRefGoogle Scholar
Ponsford, J. (2013). Factors contributing to outcome following traumatic brain injury. Neurorehabilitation, 32(4), 803–815.CrossRefGoogle ScholarPubMed
Prigatano, G. P. (2005). Disturbances of self-awareness and rehabilitation of patients with traumatic brain injury: A 20-year perspective. The Journal of Head Trauma Rehabilitation, 20(1), 19–29.CrossRefGoogle ScholarPubMed
Romano, M. D. (1974). Family response to traumatic head injury. Scandinavian Journal of Rehabilitation Medicine, 6, 1–4.Google ScholarPubMed
Stenberg, M., Stålnacke, B.-M., & Saveman, B.-I. (2020). Family experiences up to seven years after a severe traumatic brain injury-family interviews. Disability and Rehabilitation, 1–9. doi: 10.1080/09638288.2020.1774668.Google ScholarPubMed
Todres, L., Galvin, K., & Holloway, I. (2009). The humanization of healthcare: A value framework for qualitative research. International Journal Qualitative Studies of Health and Wellbeing, 4(2), 68–77.CrossRefGoogle Scholar
Tsur, N., & Haller, C. S. (2020). Physical and mental health and functioning among traumatic brain injury close relatives: The role of posttraumatic stress symptoms. Family Process, 59(2), 666–680.CrossRefGoogle ScholarPubMed
Yeates, G. (2009). Working with families in neuropsychological rehabilitation. In Wilson, B. A., Gracey, F., Evans, J., & Bateman, A. (Eds.), Neuropsychological rehabilitation: Theory, models, therapy. Cambridge: Cambridge University Press.Google Scholar