Exploration and the development of a model to meet the needs of caregivers for severe traumatic brain injury survivors

Abstract

Introduction: Caregivers are commonly engaged in the care of severe traumatic brain injury (TBI) survivors in the home setting. They often face challenges that are little understood by others outside the circle of care as a large portion of the energy must be devoted to meeting the needs of the traumatic brain injury (TBI) survivors. This study aimed to develop a model to meet the needs of caregivers for sTBI survivors at home.

Method: This was a qualitative study that involved three sequential phases of data collection. In Phase 1, document analysis was done by searching related documents in two hospitals on the East Coast of Malaysia to explore how hospitals prepare the caregivers prior to discharging TBI survivors to be cared for at home. All data were then analysed using content analysis. Following that, in-depth individual interviews were conducted in Phase 2 followed by a focus group discussion among caregivers of sTBI survivors in Phase 3 to explore the caregivers’ needs, experiences, and challenges while caring for survivors at home. All data obtained were managed using Nvivo 11 software. After verbatim transcriptions, the data were analysed using content analysis based on the Grounded Theory technique of analysis.

Finding: A total of 40 caregivers were involved in the study. The majority of the caregivers were Malay. A substantive theory known as “A Shining Cave” was developed from the three main categories that emerged; (1) Being in a state of gloom and chaos, (2) Making every effort to improve, and (3) Achieving a peaceful life. The categories projected that the resilience of caregivers in going through each phase of caring ultimately may increase their acceptance of sTBI survivors at home and motivation to care for them. This model can be used to guide the development of specific intervention programmes and the preparation of booklets for the caregivers and survivors of TBI at home.

Conclusion: The basic theory of “A Shining Cave” from this study provides a framework to improve the understanding of the prioritised care needs of patients suffering from sTBI. Increased support and resilience are both vital in achieving a peaceful life. To achieve a peaceful life, the caregiver must also make an effort to change. A model to meet the needs of caregivers provides an opportunity for them to form the necessary support in care. Additionally, a series of strategies and processes are proposed in this study for professionals and caregivers on the best ways to reduce risk and share responsibility for the care of sTBI survivors at home. These findings have implications for nursing practice, education, and research.