Family caregivers' support needs after brain injury: A synthesis of perspectives from caregivers, programs, and researchers

Abstract

There is a dearth of support for family members who assume caregiving responsibilities following acquired brain injury (ABI). This qualitative study broadens the understanding of ABI caregiver support needs through data triangulation from multiple interview sources across different settings. Thirty-nine caregivers across urban and rural settings in Ontario participated in focus groups. Interviews focused on ABI support services received, their utility, access barriers, needed supports, and suggestions for service delivery. Key informant interviews were also held with four US researchers funded through the TBI Model Systems, one Canadian provincial government health official, and representatives from 11 Ontario ABI programs including two brain injury associations. Interviews focused on existing or proposed caregiver programs and gaps in services. A coding framework was developed through content analysis, centring on five themes: coping, supports that worked, supports needed, barriers, and ideal world recommendations. Perspectives from those involved in receiving, providing and researching caregiver interventions following ABI were synthesized to provide a thorough, detailed depiction of the ongoing support needs of caregivers. This convergence of evidence underscores that caregiver support needs transcend geographical boundaries and must be comprehensive, accessible, long-term, and encompass education, emotional, and instrumental support. Recommendations for ABI caregiver support services are offered.

The rural mother's experience of caring for a child with a chronic health condition: An integrative review

“…Geographical distance created both practical and personal barriers to accessing service needs, including financial, transport, lack of time, fatigue and feelings of isolation. These issues have been reported elsewhere (Gan, Gargaro, Brandys, Gerber, & Boschen, 2010;Tong et al, 2013), and all affected the mothers' physical and emotional well-being (Hoogsteen & Woodgate, 2013).…”

Initial experiences of family caregivers of survivors of a traumatic brain injury

“…Several studies have found that caring for an individual who has sustained a TBI involves many challenges (Arango-Lasprilla et al 2010; Ergh et al 2002; Gan et al 2010; Jumisko et al 2007; Lefebvre et al 2008). Most studies on this topic focus on caregiving experiences from six months to several years post–injury.…”

“…Several studies have been conducted on family caregivers in the context of traumatic brain injuries (TBIs) (Arango-Lasprilla et al 2010; Gan et al 2010; Livingston et al 2010; Phelan et al 2011; Vangel, Rapport & Hanks 2011). Traumatic brain injuries (TBI) are regarded as a global public health problem, with research showing that TBIs affect an estimated 10 million people worldwide every year (Hyder et al 2007).…”

“…Caregivers with relatives who sustained a TBI have been found to face many challenges in the caregiving role (Arango-Lasprilla et al 2010; Gan et al 2010; Jumisko, Lexell & Söderberg 2007). Challenges that have been reported by relatives of patients who sustained a TBI include the impact of the physiological, psychological and neurobehavioural consequences, financial strain, insufficient time for themselves, lack of information on the consequences of sustaining a TBI, lack of understanding or empathy from others, emotional distress, stress, anxiety, depression, shock, uncertainty and a lack of resources (Braine 2011; Coco et al 2011; Ergh et al 2002; Gan et al 2010; Jumisko et al 2007; Lefebvre, Cloutier & Levert 2008; Man 2002; Marsh et al 2002; McAllister 2008; Norup, Siert & Mortensen 2013; Phelan et al 2011; Rotondi et al 2007; Verhaeghe, Defloor & Grypdonck 2005).…”

Traumatic brain injury and post-acute decline: what role does environmental enrichment play? A scoping review

“…Further rehabilitation support during the post-acute stages of recovery, such as home assessments or on-going therapy maintenance, would also be optimal. Gan et al (2010) examined the support needs after brain injury and made several recommendations for support services. They suggested that family systems-based services should be accessible, life-long, individualized and flexible, as well as efficient, and that support system-based services should include proper diagnoses, incorporate a multi-component approach, provide brain-injury-specific services that are responsive to needs with proactive follow-ups, and importantly, provide continuous education.…”