Challenges Faced by Family Caregivers of Patients with Spinal Cord Injury

Abstract

Background: Spinal Cord Injury (SCI) presents significant challenges not only to the individuals directly affected but also to their family caregivers. The sudden onset of SCI demands immediate adaptation to new caregiving roles, inducing physical, financial, emotional, and psychological strains on caregivers. Understanding these dynamics is crucial for developing supportive interventions that can alleviate the burdens faced by caregivers and improve the quality of care for SCI individuals. Objective: This study aimed to explore the experiences of family caregivers of individuals with SCI, focusing on the challenges they face, the roles they assume, the strains encountered, and the coping strategies they employ. Methods: A qualitative exploratory study was conducted among family caregivers of individuals with SCI at the Punjab Institute of Neurosciences, Lahore. Purposive sampling was used to select participants who were engaged in caregiving for at least 10 hours per week. Data were collected through semi-structured interviews, utilizing a specifically designed interview question grid. Demographic data were analyzed using SPSS software, while thematic analysis of interview data was conducted using NVivo 12 software. The study adhered to ethical standards, including obtaining informed consent from all participants. Results: The study comprised an equal distribution of male and female participants, with a majority engaged in caregiving for nine to twelve hours per week. Four main themes emerged: the initial challenge of becoming a caregiver, the multifaceted roles of caregiving, the strains of caregiving, and the coping strategies adopted. Caregivers reported significant physical strain, financial burdens, emotional and psychological stress, and relied on a combination of spiritual beliefs, optimism, and social support to navigate their caregiving responsibilities. The study also highlighted the importance of psychotherapy and comprehensive caregiving training sessions for caregivers. Conclusion: Family caregivers of individuals with SCI face substantial challenges that impact their physical, financial, emotional, and psychological well-being. Supportive interventions, including psychotherapy, comprehensive training, and the establishment of support groups, are essential to aid caregivers in managing the complexities of their roles effectively. Further research is needed to quantify these challenges and evaluate the effectiveness of proposed interventions.