Research on caregiving after neurotrauma and neurological disability extends the focus beyond individuals with neurological conditions to caregivers - family, friends, and significant others who also are also greatly impacted. In this thematic issue published in NeuroRehabilitation, noted experts present the latest research from around the world to help rehabilitation clinicians incorporate more of a systems perspective to improve the functioning of caregivers of individuals with neurological conditions.
Interventions to help caregivers take better care of themselves can improve the quality of care they are able to provide to individuals with neurological disabilities, yet they are an often-overlooked focus of research. Unfortunately, caregivers of individuals with neurotrauma and neurological disability have a large number of unmet needs. The field needs to evaluate caregiver interventions and figure out how to embed these into healthcare systems. This thematic issue helps rehabilitation clinicians incorporate more of a systems perspective to improve the functioning, not only of individuals with neurological conditions, but also their caregivers."
Paul B. Perrin, PhD, Guest Editor, School of Data Science and Department of Psychology, University of Virginia, Charlottesville, and Central Virginia Veterans Affairs Health Care System, Richmond, VA, USA
The ten articles in this thematic issue on Caregiving after Neurotrauma and Neurological Disability highlight research from diverse geographic regions and underscore new influences on caregivers' mental health, such as affiliate stigma. The issue covers the needs of caregivers through literature reviews, empirical studies, and caregiver intervention studies. It culminates in a series of suggestions for the field to incorporate evidence-based common factors in caregiver interventions; dissemination and implementation science approaches to embedding caregiver interventions into healthcare systems; and cultural considerations in the context of caregiving.
In the first of two literature reviews, lead author Anne Norup, PhD, Neurorehabilitation Research and Knowledge Centre, Rigshospitalet, and Department of Psychology, University of Southern Denmark, Odense, Denmark, and colleagues reviewed 24 published studies that holistically found that brain injury caregivers experienced higher burden if they cared for an individual with more severe injuries, decreased physical and neuropsychological functioning, and lower mental health. Caregivers also had a higher burden if they spent more time caregiving, had greater unmet needs, and had lower mental health themselves.
"We propose that future intervention research targets brain injury caregivers with these specific characteristics given the risk for increased burden," noted Dr. Norup. "We also suggest that future research should focus on caregiver coping style, problem solving ability, and personality, which are relatively understudied areas in the caregiving literature.
In one of four empirical studies, lead author Daniel W. Klyce, PhD, Central Virginia VA Health Care System, Virginia Commonwealth University Health System, and Sheltering Arms Institute, Richmond, VA, USA, and colleagues examined the associations between emotional awareness, emotional functioning, and empathy in 90 individuals with traumatic brain injury (TBI) and their caregivers' burden.
"We found that high levels of hostility and low emotional self-awareness in individuals with TBI were uniquely associated with higher caregiver burden," commented Dr. Klyce. "Screening for these predictors of increased caregiver burden and behavioral management treatment for these neurobehavioral issues combined with patient and family education could be helpful to minimize the negative impacts on caregiver burden."
The issue also debuts four new interventions intended to help caregivers cope better with their caregiving role and provide better care to individuals with neurological conditions: a comparison of interventions to help 163 parent caregivers of adult children veterans with polytrauma; a multisite randomized feasibility trial across three sites of Problem-Solving Training for 94 caregivers of individuals with TBI during inpatient rehabilitation; an observational pilot study examining the feasibility and acceptability of the Resilient Living Program in a sample of 16 individuals with stroke or brain tumor undergoing comprehensive acute inpatient rehabilitation and/or their family caregivers; and the first systematic, large-scale randomized clinical trial of a TBI caregiver intervention in Latin America. Their five-session Transition Assistance Program uniquely targeted 89 TBI caregivers during and after the transition from hospital to home after an acute TBI.
"The biggest challenge caregiving researchers face is getting their interventions implemented in healthcare systems," commented Dr. Perrin. "Unfortunately, the vast majority of caregiver interventions go no further than a peer-reviewed publication. So, the field needs to direct substantial resources to dissemination and implementation science research to figure out how to get health systems to adopt these evidence-based interventions."
Kjeldgaard, A., et al. (2023) Predictors of caregiver burden in caregivers of individuals with traumatic or non-traumatic brain injury: A scoping review. Neurorehabilitation. doi.org/10.3233/NRE-220134.