Impact of brain injury on caregiver outcomes and on family quality of life
Pinto, Priya E.
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The primary goal of this study was to develop a comprehensive model of the outcomes (defined as problems) experienced by the caregivers of individuals with brain injury. This participant group was selected because most often the focus of all attention is on the individuals with brain injury, but not on the people who take care of them--often for the rest of their lives. This study attempted to shift the focus to the caregivers to look at how a brain injury in a loved one impacted their lives. This research study used concept mapping as a methodology to both illustrate the model and to identify the priorities in these problem areas. Twenty caregivers of individuals with brain injury were recruited from Baltimore, Maryland, to participate in this study. The caregivers "brainstormed" on the problems and challenges they had faced since taking on their care giving roles. The caregivers also "rated" the amalgamated list of problems with respect to their perceptions on the impact of those problems on their family quality of life (FQOL). A group of 10 professionals "sorted" the problems so that concept mapping procedures could be performed. The professionals also rated the same problems with respect to their perceptions of the impact of those problems on family quality of life for the caregivers. The sorting task resulted in 7 "clusters" of caregiver problems. These included: Cluster 1: Dealing with the "System"; Cluster 2: Negative Impact on Family System Functioning; Cluster 3: Loss of "Us"; Cluster 4: Interpersonal Stressors/Losses for Caregiver; Cluster 5: Caregiver Emotions; Cluster 6: Grief and Loss, and Cluster 7: Physical Changes in Caregivers. Caregivers indicated that their most important problems were in the domains of physical changes (exhaustion, insomnia, weight gain), followed by the emotional toll on them, as well as the stresses of "dealing with the system". However there were obvious differences in the perceptions of the professional participant group, thus providing some interesting contrasts. For example the caregivers rated Cluster 7 (Physical Changes in Caregivers) as having the highest impact on FQOL; however, the professionals rated this cluster as having the lowest impact. The caregivers also rated Cluster 1 (Dealing with the "System") as a high impact cluster with respect to their family quality of life; again, the professionals rated this cluster as a much lower priority as compared to other clusters. The professionals, who possibly had never experienced this reality themselves, were more concerned with clusters that reflected high emotive impact on the caregivers such as "Negative Impact on Family System Functioning", "Loss of Us" and "Grief and Loss". In effect, the caregivers demonstrated a "Maslow's hierarchy" of problems; their responses spoke first to the need to survive. The caregivers indicated that their problems were often the most basic ones- to be able to sleep and keep energy levels high, to be able to "deal with the system" to get the help they needed for their loved ones, and to deal with the emotional overload caused by the loved one's injury. The professionals, on the other hand, were more concerned with grief and loss issues, caregiver emotions, and the negative impact on the caregivers and their families. While the perceptions of both groups are valid, it might be time to take a closer look so that caregiver needs can truly be met, with the highest emphasis on what the caregivers are reporting as their top priority areas. Recommendations of this study included system navigators - individuals who can help caregivers and families navigate the system, as well as linkages to service coordination and other sources of assistance, such as support groups. Also recommended were linkages for caregivers to counselors and therapists who have knowledge of the vagaries of brain injuries, and the potential impact on such individuals as well as their caregivers and extended families.