ABSTRACT
PURPOSE: To explore families' experiences of participating in a family intervention, targeting families living with the consequences of acquired brain injury (ABI) or spinal cord injury (SCI). MATERIALS AND METHODS: Individuals with ABI or SCI and their family members were recruited from a randomised controlled trial investigating the effectiveness of the manual-based family intervention, which consisted of eight weekly sessions. Semi-structured interviews were conducted with 16 families (n = 33). The data were analyzed through reflexive thematic analysis. RESULTS: One central theme was developed "A sense of belonging together again", describing the value of the reciprocal format of the family intervention, where individuals with ABI or SCI and their family members gained new insights into each other while building up their relationship. The central theme was supported by three additional themes: "Strengthened communication and emotional control", "Acknowledging the changed life situation" and "Being seen as a whole person". CONCLUSIONS: The family intervention supported the families to strengthen family cohesion and to be capable to manage the changed life situation. The findings emphasize the importance of a family-centered approach in neurorehabilitation, and how healthcare professionals play a significant role in facilitating families to achieve a balanced level of family cohesion.
Acquiring an injury to the brain or spinal cord constitutes a severe life change for the entire family and therefore a family-centered approach in neurorehabilitation is crucial.As individuals with injury and their family members often feel disconnected during rehabilitation, healthcare professionals play a significant role in facilitating the family to share their experiences with each other to strengthen family cohesion.Not all families are aware of their need for support. Thus, healthcare professionals should pay particular attention to identify the individual family's needs for being supported.During conversations with families, healthcare professionals should focus on the balance between separateness and togetherness in the family system to support the families in achieving a balanced level of family cohesion.
ABSTRACT
BACKGROUND: Caregivers of individuals with traumatic (TBI) or non-traumatic (nTBI) brain injuries are at risk of significant caregiver burden. Consequently, it is crucial to examine predictors of caregiver burden to enable early identification and intervention. OBJECTIVE: To examine predictors of caregiver burden in caregivers of individuals with TBI/nTBI. METHODS: A scoping review was conducted in the bibliographic databases PubMed, EMBASE (Ovid) and APA PsycInfo (EBSCO). Search terms included: 'acquired brain injur*', 'traumatic brain injur*', 'brain injur*', 'non-traumatic brain injur*', or 'stroke*' combined with 'burden', 'caregiver burden', 'perceived burden', or 'caregiver strain'. The search was limited to articles written in English and published in academic journals between 2000 and March 2022. EndNote was used to manage the references and identify duplicates. RESULTS: Twenty-four studies were included. Care recipient-related predictors of caregiver burden included more severe injuries, functional disabilities (including decreased physical and neuropsychological functioning), and worse mental health. Caregiver-related predictors included more time spent caregiving, worse mental health, and unmet needs. For several predictor variables, evidence was mixed or vague. CONCLUSION: The results highlight which caregivers are at risk of caregiver burden and point to several areas of potential intervention to prevent caregiver burden. Future research should explore the relationship between characteristics of the caregiver and caregiver burden, including coping style, problem-solving techniques, and personality, as these have been sparsely investigated and are potentially modifiable through intervention. Further research is needed to elucidate if burden can be prevented by interventions targeting caregivers at risk. Addressing these gaps may clarify the link between caregiver burden and predictor variables and assist in development of interventions that may prevent burden.
