Challenges Faced by Family Caregivers of Patients with Spinal Cord Injury

Main Article Content

Shazia Karim
Sarfraz Masih
Hajra Sarwar


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.

Article Details

How to Cite
Karim, S., Masih, S., & Sarwar, H. (2024). Challenges Faced by Family Caregivers of Patients with Spinal Cord Injury. Journal of Health and Rehabilitation Research, 4(1), 670–676.
Author Biographies

Shazia Karim, The University of Lahore- Lahore Pakistan.

MS Nursing Student.

Sarfraz Masih, The University of Lahore- Lahore Pakistan.

Principal & Associate Professor.

Hajra Sarwar, The University of Lahore- Lahore Pakistan.

Assistant Professor.


Hardy TA. Spinal cord anatomy and localization. CONTINUUM: Lifelong Learning in Neurology. 2021;27(1):12-29.

Almuneef M, Saleheen H, Albuhairan F, Al-Eissa M, Al Muntaser M, Al Alem H, et al. Child mortality in Saudi Arabia: Time for action at all levels. International journal of pediatrics and adolescent medicine. 2021;8(3):165-71.

Kuris EO, Alsoof D, Osorio C, Daniels AH. Bowel and Bladder Care in Patients With Spinal Cord Injury. JAAOS-Journal of the American Academy of Orthopaedic Surgeons. 2021:10.5435.

Yuan S, Shi Z, Cao F, Li J, Feng S. Epidemiological features of spinal cord injury in China: a systematic review. Frontiers in neurology. 2018;9:683.

Darain H, Ilyas SM, Zeb A, Ullah I, Muhammad D. Epidemiology of spinal cord injury in Pakistan: a retrospective study. Physikalische Medizin, Rehabilitationsmedizin, Kurortmedizin. 2017;27(02):106-9.

Khanzada FJ, Che AZCCD, Masuri MG, Rahim MZA, Poot EFM, Ranabhat MK. Participation in Daily Activities and Quality of Life among Individuals with Paraplegic Spinal Cord Injury in Pakistan. Environment-Behaviour Proceedings Journal. 2023;8(25):115-22.

Budd MA, Gater Jr DR, Channell I. Psychosocial consequences of spinal cord injury: a narrative review. Journal of personalized medicine. 2022;12(7):1178.

Hall SA, Rossetti Z. The roles of adult siblings in the lives of people with severe intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities. 2018;31(3):423-34.

Huang J, Li P, Wang H, Lv C, Han J, Lu X. Exploring elderly patients’ experiences and concerns about early mobilization implemented in postoperative care following lumbar spinal surgery: a qualitative study. BMC nursing. 2023;22(1):355.

Islam J. Impact of physiotherapy intervention to increase spinal cord independence measure on SCI patients: Bangladesh Health Professions Institute, Faculty of Medicine, the University …; 2022.

Kum C, Miller EL, Jones H, Kean EB, Kreitzer N, Bakas T. Theoretically based factors affecting stroke family caregiver health: An integrative review. Western Journal of Nursing Research. 2022;44(3):338-51.

Pope ND, Baldwin PK, Gibson A, Smith K. Becoming a Caregiver: Experiences of Young Adults Moving into Family Caregiving Roles. Journal of Adult Development. 2022:1-12.

Zanini C, Amann J, Brach M, Gemperli A, Rubinelli S. The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury. Spinal cord. 2021;59(5):493-503.

Lynch J, Cahalan R. The impact of spinal cord injury on the quality of life of primary family caregivers: a literature review. Spinal cord. 2017;55(11):964-78.

Song Z, Zubizarreta JR, Giuriato M, Paulos E, Koh KA. Changes in health care spending, use, and clinical outcomes after nonfatal firearm injuries among survivors and family members: a cohort study. Annals of internal medicine. 2022.

Jeyathevan G, Cameron JI, Craven BC, Munce SE, Jaglal SB. Re-building relationships after a spinal cord injury: experiences of family caregivers and care recipients. BMC neurology. 2019;19(1):1-13.

McCoy AD. An exploration of the lived experiences of the caregiving role and life satisfaction in caregivers following traumatic spinal cord injury: University of Nevada, Reno; 2016.

Scott RK, Nadorff DK, Barnett M, Yancura L. Respect Your Elders: Generativity and Life Satisfaction in Caregiving Grandparents. The International Journal of Aging and Human Development. 2022:00914150221092128.

Jeyathevan G, Catharine Craven B, Cameron JI, Jaglal SB. Facilitators and barriers to supporting individuals with spinal cord injury in the community: experiences of family caregivers and care recipients. Disability and rehabilitation. 2020;42(13):1844-54.

Charlifue S, Botticello A, Kolakowsky-Hayner S, Richards J, Tulsky D. Family caregivers of individuals with spinal cord injury: exploring the stresses and benefits. Spinal cord. 2016;54(9):732-6.

Smith L, Morton D, van Rooyen D. Family dynamics in dementia care: A phenomenological exploration of the experiences of family caregivers of relatives with dementia. Journal of Psychiatric and Mental Health Nursing. 2022.

Smith E, Boucher N, Miller W. Caregiving services in spinal cord injury: a systematic review of the literature. Spinal cord. 2016;54(8):562-9.

Glover CD. Impact of Resilience on Quality of Life in Spinal Cord Injured Clients: Walden University; 2023.

Mohammed RS, Boateng EA, Amponsah AK, Kyei-Dompim J, Laari TT. Experiences of family caregivers of people with spinal cord injury at the neurosurgical units of the Komfo Anokye Teaching Hospital, Ghana. PloS one. 2023;18(4):e0284436.

Graf NM. Family adaptation across cultures toward a loved one who is disabled. The Psychological and Social Impact of Illness and Disability:. 2017:201-22.