Family interventions after acquired brain injury and other chronic conditions: a critical appraisal of the quality of the evidence.

Toronto Rehabilitation Institute, Toronto, ON, Canada.
Neurorehabilitation (Impact Factor: 1.74). 02/2007; 22(1):19-41.
Source: PubMed

ABSTRACT Family caregivers of individuals with acquired brain injury (ABI) and other chronic disabilities typically experience long-term adjustment difficulties within the entire family system. Interventions to assist parents and spouses are rare, and for siblings and offspring even more so. Among the few existing interventions, only a very small number have been evaluated in any scientifically sound manner for effectiveness in alleviating stress and burden. A highly targeted literature search of family caregiver intervention studies identified 31 articles, only four of which were in brain injury, which met specific inclusion criteria. Randomized controlled trial studies of six types of family caregiver interventions were systematically assessed for their quality of design and evidence of effectiveness. The results revealed a body of literature lacking in methodological rigor. At present there is no strong research evidence supporting any specific intervention method for family caregivers of individuals with ABI or any of the other chronic condition groups surveyed, although an abundance of anecdotal, descriptive, and quasi-experimental support exists in the rehabilitation literature. This conclusion points to the need for launching new pilot studies and rigorous evaluations of caregiver intervention effectiveness, some of which are now emerging or in process in several locations across the United States.

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    ABSTRACT: Purpose The level of care burden experienced by caregivers of patients with spinal cord injury and their coping style were evaluated in order to identify ways to improve their capacity to respond and reduce the care burden. Methods A convenience sampling method was used to select 150 spinal cord injury patients who were discharged from the Second and the Third Affiliated Hospital of Nanchang University and their primary caregivers. The Chinese version of the Zarit Caregiver Burden Interview and the Simplified Coping Style Questionnaire were distributed to assess caregiver burden and coping strategies. Results The care burden score of the caregivers of patients with spinal cord injury was 52.91 ± 11.56 points. Eighty-eight percent of caregivers reported moderate or severe care burden levels. The largest proportion of caregivers were female spouses, who were less likely to use an active coping strategy. A negative coping strategy was more frequently used by caregivers compared to healthy adults, and was positively correlated with burden of care. In contrast, a negative correlation was found between the care burden and an active coping style. Conclusion Primary caregivers of spinal cord injury patients report a heavy burden of care. As active coping strategies are more beneficial, medical care providers should encourage caregivers to make more use of these coping styles to promote physical and mental health for themselves, their patients and their family, as well as to improve the quality of care provided.
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    ABSTRACT: Objective: Prospective assessment of informal caregiver (IC) burden 4 years after the traumatic brain injury of a relative. Setting: Longitudinal cohort study (metropolitan Paris, France). Participants: Home dwelling adults (N = 98) with initially severe traumatic brain injury and their primary ICs. Main Outcome Measures: Informal caregiver objective burden (Resource Utilization in Dementia measuring Informal Care Time [ICT]), subjective burden (Zarit Burden Inventory), monetary self-valuation of ICT (Willingness-to-pay, Willingness-to-accept). Results: Informal caregivers were women (81%) assisting men (80%) of mean age of 37 years. Fifty-five ICs reported no objective burden (ICT = 0) and no/low subjective burden (average Zarit Burden Inventory = 12.1). Forty-three ICs reported a major objective burden (average ICT = 5.6 h/d) and a moderate/severe subjective burden (average Zarit Burden Inventory = 30.3). In multivariate analyses, higher objective burden was associated with poorer Glasgow Outcome Scale-Extended scores, with more severe cognitive disorders (Neurobehavioral Rating Scale-revised) and with no coresidency status; higher subjective burden was associated with poorer Glasgow Outcome Scale-Extended scores, more Neurobehavioral Rating Scale-revised disorders, drug-alcohol abuse, and involvement in litigation. Economic valuation showed that on average, ICs did not value their ICT as free and preferred to pay a mean Willingness-to-pay = [Euro sign]17 per hour to be replaced instead of being paid for providing care themselves (Willingness-to-accept = [Euro sign]12). Conclusion: Four years after a severe traumatic brain injury, 44% of ICs experienced a heavy multidimensional burden.
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