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

Abstract

Purpose

Families provide vital support to relatives with brain injury yet shoulder significant stress and anxiety with little help threatening family cohesion and rehabilitative outcomes. This paper analyses the accounts of people caring for a long-term partner with brain injury to identify coping mechanisms and support systems that enhanced well-being. Materials and method: This study used semi-structured interviews with eight participants and interpretative phenomenological analysis.

Results

Three themes are reported—“moving through denial toward acceptance”; “confronting and managing ambiguous loss”; and “becoming an expert carer”. Theme one describes participants’ struggles to accept the longevity of brain injury and use of strenuous care practices to deny or fight disability; this proved counterproductive and was later remedied by individuals embracing change and making adaptations. Theme two reports how participants split their partners’ identities -before and after brain injury- to help grieve for the marital relationships they lost. Theme three looks at participants’ development of self-reliant attitudes to caregiving due to perceived limited state help, while embracing peer support that enhanced information and emotion-based coping.

Conclusions

Findings support therapeutic practices that help family members confront the permanence of brain injury, and target feelings of complex and unresolved grief. Future research proposals are discussed.

IMPLICATIONS FOR REHABILITATION:

• Caregivers typically provide considerable rehabilitative support to spouses living with Acquired Brain Injury to manage the physical and psychosocial burdens of long-term disability.

• Therapeutic interventions should reconcile notions of hope and acceptance in order to help carers confront the permanence of brain injury and develop sustainable care practices.

• We recommend that interventions address feelings of unresolved grief and ambiguous loss and develop tailored support for caregivers which targets pertinent psychological concerns.

Keywords:

• brain injury
• caregiver
• partner
• phenomenology
• acceptance
• ambiguous loss

Acknowledgements

The authors are grateful to the Headway staff without whom this research would not have been possible. Special thanks are paid to the participants who kindly shared their time, experience and expertise.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Ethical approval

Ethical approval for the study was provided by the De Montfort University Faculty of Health and Life Sciences Research Ethics Committee in April 2016 (Reference number: 1783).