Support for family members who are caregivers to relatives with acquired brain injury

Abstract

Objectives. Family members caring for a patient with acquired brain injury (ABI) are coping with inordinate levels of stress partially due to their lack of understanding of the neuropsychological effects of acquired brain injury in the patient. The objective of this research is to show that as the caregivers’ stress levels increase, there is an increase in suicidal ideation. This highlights the causal relationship between unhealthy stress and reduced psychological well-being in these caregivers. In addition, qualitative research evidence regarding the caregivers’ views of their main sources of stress are presented. Methods. The participants were a random sample of 80 family caregivers of patients with acquired brain injury, out of whom 72.5% (58) are primary caregivers and 27.5% (22) are secondary caregivers. A mixed methodology was utilized. It comprised cross-sectional descriptive and phenomenological approaches. Quantitative data were obtained from two standardized measures: The Stress Symptom Checklist (SSCL) and item 9 of the Beck Depression Inventory. The qualitative data were derived from self-report procedures that were part of a structured questionnaire administered individually during the interviews. Results. The Kruskal-Wallis test with a significance level of p = .05 was used to compare the stress and suicidal ideation scores, which revealed that increasing levels of stress led to increased suicidality. The analysis of the qualitative data revealed five themes which were identified as the triggers of the caregivers’ profound stress. Most caregivers felt that it was predominantly the patient’s neuropsychological deficits, such as emotions and/or moods, cognitive ability, behavior and personality, executive function, and social factors that caused them profound stress. Conclusions. Support and education are needed to help family caregivers understand the neuropsychological impact of acquired brain injury on the patient. Once caregivers have an improved understanding and receive better support from healthcare providers, they should experience less stress and be better prepared to provide the appropriate support to patients with acquired brain injury.