The Self-Reported Needs and Reflections of Caregivers of Brain Injury Survivors

This study seeks to examine the experience of family members of brain injury survivors in regard to the accessibility, helpfulness, and the effects of the information, resources, and support that they received from professionals during the recovery period, post injury. This research was qualitative and was completed through the use of a semi-structured interview schedule. Participants were asked questions which facilitated the exploration of six different topic areas in order to gain an understanding of the participants’ and their families’ experience throughout the recovery process following the occurrence of a brain injury of a family member. The six areas that were explored were: knowledge and awareness of brain injury, family/caregiver, long term effects of brain injury; the family’s way of coping and adaptation, advice for others who have a family member that has recently suffered a brain injury, as well as additional necessary resources, supports and educational needs. The research found that nine themes emerged. These themes include: lack of general brain injury awareness, misdiagnosis, stress and change in family roles; lack of family effects information and resources provided; prevalence emotional and mental health effects; lack of information provided on long term effects; family support and developed strengths. Results indicate a need to increase the amount of and availability of brain injury educational information, resources and support for brain injury survivors and their families