Caregiver stress in traumatic brain injury

Abstract

Aims: Many patients experience physical, behavioural, cognitive and emotional problems following traumatic brain injury (TBI). They may require continuing care for many years, most of which is provided by informal caregivers, such as spouses, parents, or other family members. The caregiving role is associated with a range of adverse effects including anxiety, depression, poor physical health and lowered quality of life. This article explores issues around caregiver stress; highlighting interventions for this group and areas for further research. Methods:Literature exploring the impact of caregiving, its influencing and alleviating factors and interventions for caregivers of people with TBI is discussed, with brief critical analysis of key studies. Findings:Research suggests that caregiver characteristics, coping strategies, their appraisal of the situation and social networks may be associated with the amount of distress experienced. Many caregivers have unmet needs such as respite care and information provision on TBI. Providing information may help to alleviate strain.Community-based family therapies providing education, support and counselling can help to decrease distress and improve aspects of family functioning, although evidence for these is lacking. Conclusions:There is a need for more well-designed, controlled studies evaluating the impact of interventions to alleviate caregiver strain.

Information Needs of Family Caregivers of Persons With Cognitive Versus Physical Deficits

“…Caregivers' support needs can be viewed as a spectrum of needs, including practical, spiritual, psychosocial, informational, emotional, and physical support needs, as adapted from the supportive care needs framework model for caregivers of cancer patients (Fitch, 1994). A number of studies have shown that the need for information is a top priority among caregivers of persons with dementia (Muangpaisan et al, 2010;Wackerbarth & Johnson, 2002), stroke (Hare, Rogers, Lester, McManus, & Mant, 2006;Kim & Moon, 2007;MacIsaac, Harrison, & Godfrey, 2010;Mak, Mackenzie, & Lui, 2007;), spinal cord injury (SCI; Meade, Taylor, Kreutzer, Marwitz, & Thomas, 2004;Post, Bloemen, & de Witte, 2005), traumatic brain injury (TBI; Arango-Lasprilla et al, 2010;Blake, 2008, Rotundi, Sinkule, & Spring, 2005Sander, Clark, Atchison, & Rueda, 2009), Parkinson's disease (PD; Hasson et al, 2010;Kristjanson, Aoun, & Oldham, 2006;Thomas & Sweetnam, 2002), and multiple sclerosis (MS; Corry & While, 2009;Kersten et al, 2000;Koopman, Benbow, & Vandervoort, 2006;Kristjanson et al, 2006). In general, caregivers of persons with chronic disease have been shown to desire two types of information: general information about the medical condition of the care recipient and specific, understandable information tailored to their situation.…”

Coping and Health Problems of Caregivers of Survivors with Traumatic Brain Injury

“…Hence, caregivers play an important role in helping them to go through the abovementioned processes (1,5,6,(9)(10)(11)15).Effective adjustment to these difficult consequences enables survivors to recover from disability, gain increased independence and improve their quality of life (27).…”

“…How caregivers cope can adversely affect the status of their health (1,11,14,18).As for their health problems, emotional functioning, mental and physical health, many studies (29)(30)(31)(32) clearly note correlations with the recovery outcomes of survivors with TBI in the rehabilitation phase. However, the caregivers in this study reported more problems with physical health than emotional functioning and mental health.…”

“…Several longitudinal follow-up studies (11)(12)(13) on survivors with TBI notea significant impact on caregiver roles.Several associations between caregiver quality of life, health status and survivor recovery also are evident in the findings of these studies. However, an evaluation of the difficulty in providing care for survivors with TBI during the immediate rehabilitation phase after discharge from hospital has been recommended (1,3).…”

Psychotherapy for Families after Brain Injury

“…Caregivers experience elevated levels of depression and anxiety after a neurological event in their loved ones (see Blake 2008, for a review; Harris et al 2001;Hoofien et al 2001;Judd 1999;Kreutzer et al 1994;Marsh et al , 2002Schonberger et al 2010;Turner et al 2010). As identified in phase 1 of the FEM, relatives react with panic upon notification of their loved one's injury, in combination with dread that their loved one may not survive McAlaster et al 2004).…”