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

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.

"Stuck in a loop of fear": a phenomenological exploration of carers' experiences supporting a spouse with acquired brain injury.

PURPOSE: Family caregivers are important to facilitating the rehabilitation of individuals with brain injury. However, research shows spousal carers often reporting poorer health and well-being with psychosocial challenges including increased marital dissatisfaction. This study explores the accounts of participants caring for a spouse with brain injury. MATERIALS AND METHODS: This study used semi-structured interviewing and interpretative phenomenological analysis. RESULTS: One theme, "Living in and beyond the loop of fear", with two subheadings is reported. Participants' attempts to manage their fears prominently defined their early caregiving. Fears were aggravated by the vulnerability of their spouse's health which partially owed to brain injury sometimes having no symptoms prior to its onset. Consequently, participants anxiously strove to prevent further harm to their spouse's health due to what they perceived as the continued "hidden" threat of brain injury. Therefore, participants became hypervigilant, leaving themselves vulnerable to burnout. Over time, some participants modified care practices and managed fears using beliefs accepting their limits to protect their spouses' health. CONCLUSIONS: Findings suggest that beliefs conducive to acceptance helped carers to develop more sustainable, less over-protective, care. Interventions to help carers develop similar beliefs could be provided in therapeutic settings. Recommendations for future research are made. Implications for Rehabilitation Caring for a long-term partner with acquired brain injury has considerable challenges which can threaten an individual's health and well-being. Our research reports on carers' experiences of anxiety which they managed through hypervigilant and overprotective practices which put them at risk of burnout. Consequently, we recommend the promotion of care beliefs that reframe caregiving: recognising the carer's limitations to safeguard a spouse, whilst accepting the vulnerability of the spouse's health. We propose that promoting such principles in therapeutic settings may better equip carers emotionally to provide sustainable care, something which could benefit the carer and spouse's rehabilitation alike.