Traumatic Brain Injury: Unmet Support Needs of Caregivers and Families in Florida

Abstract

Sustaining a Traumatic Brain Injury results in familial strain due to the significant impact the injury has upon the role and function of individuals and their families at home and in the community. Using the Stress Process Model of Caregiving, a caregiver needs assessment survey was developed and conducted to better understand the needs of individuals with a Traumatic Brain Injury and their caregivers. Survey results indicate that caregivers experience many challenges including unmet needs in areas of relational supports such as maintaining relationships, long-term emotional and financial support for themselves and the survivor, and the need for a patient or caregiver advocate. Implications for future practice are presented.

Family caregivers: what do they need? An integrative review

“…A multiplicity of previously existing roles is added to the caregiver role, which makes it difficult to take on this new role due to the difficulty inherent in time management, interaction and conflict of some of the roles. Conciliating the role of family caregivers with maintaining various roles and social relations becomes a challenge for caregivers, which can cause tension and conflict in this context (13) . One study enumerates some of these needs: having time to sleep; help for cooking and shopping; having time for family and friends; being able to go to church; having time for themselves (14) .…”

“…Emotional and interpersonal needs, namely being able to rely on someone to vent and to get recognition for their care efforts from friends and family are described throughout the analyzed studies, showing the importance of support for caregivers (1)(2)(3)7,(11)(12)(13)(14)(15) . Research results indicate that caregivers experience many challenges, including unmet needs in areas of relational support, such as maintaining long-term relationships and emotional support (7) .…”

“…Social needs, a support network for caregivers and economic and structural support are all described in the analyzed studies, with the importance of formal support being highlighted (1,3,(7)(8)(9)(10)(11)(12)(13)(14)(15) . Caregivers reported different experiences associated with formal support; some felt supported and involved in nursing and therapeutic procedures, while others experienced little help, as well as a lack of understanding and empathy (11) .…”

Supporting self‐management after traumatic brain injury: Codesign and evaluation of a new intervention across a trauma pathway

“…Though an injury may be clinically categorized as “mild,” individuals can go on to experience longer‐term cognitive, psychological, emotional and social effects, frequently resulting in “hidden disability” . Families navigate a complex, changing situation that may include mood disturbances associated with their relative's injury, shifts in family relationships and changes in financial resources . People who are discharged from hospital after TBI are often referred to as “walking wounded,” a label which can diminish the broad impacts and need for adaptation to challenges in everyday life …”

A structured multicomponent group programme for carers of people with acquired brain injury: Effects on perceived criticism, strain, and psychological distress

“…The positive effects of the programme were maintained for at least 3 months, suggesting that it may have initial validity for improving some of the negative aspects of the carer experience. While family members function as extensions or partners in health care services, they often do so without formal training or support (Fortune, Smith, & Garvey, 2005;Ramkumar & Elliot, 2010), and often without routine access to the health care systems that rely on their caregiving (Dillahunt-Aspillaga et al, 2013;Ramkumar & Elliot, 2010). The effects of ABI on the individual have been well documented and may encompass significant alterations in the cognitive, emotional, physical, interpersonal, and vocational aspects of a person's life (Corrigan et al, 2010;Kreutzer, Rapport, et al, 2009;Osborn, Mathias, & Fairweather-Schmidt, 2014).…”