Analysis of Support for Family Caregivers of Patients with Spinal Cord Injury in a Resource-Limited Setting in Ghana
Sarah Asamoah *
Directorate of Surgery, Komfo Anokye Teaching Hospital, Kumasi, Ghana.
Rasheed Ofosu-Poku
Directorate of Family Medicine, Komfo Anokye Teaching Hospital, Kumasi, Ghana.
Frederick Anafi
Korle-Bu Nursing and Midwifery Training College, Accra, Ghana.
Abraham Dapilah
Directorate of Surgery, Komfo Anokye Teaching Hospital, Kumasi, Ghana.
Enock Sarfo
Directorate of Surgery, Komfo Anokye Teaching Hospital, Kumasi, Ghana.
Prince Appiah Yeboah
Faculty of Palliative Care, Ghana College of Nurses and Midwives, Ghana.
*Author to whom correspondence should be addressed.
Abstract
Introduction: The global incidence of spinal cord injury (SCI) is on the rise. Family caregivers of patients with SCI play a significant role assisting with care at home, to help them integrate into the community. The caregiving role requires support to cope with the physical, psychosocial and financial challenges experienced.
Aim: This study explores the support system of family caregivers of patients with SCI in Ghana.
Materials and Methods: A qualitative exploratory design was used and ten family caregivers of patients with SCI were sampled purposively. Data was collected through individual face-to-face interviews using a semi structured interview guide. Interviews were audio-recorded, transcribed verbatim, coded to identify themes and subthemes, and content analysis done.
Findings: Two main themes and six subthemes emerged. Family caregivers received physical, financial and emotional support from significant others, though many continued to have unaddressed financial and physical support needs. There were significant gaps in healthcare system support as most family caregivers had little knowledge and skills about SCI and its management, and outpatient clinic timing was not favourable.
Conclusion: Family caregivers should be involved actively in management of patients with SCI, and assisted to explore and utilize few support resources available.
Keywords: Spinal cord injury, social support, family caregivers, healthcare system, palliative care, low and middle-income countries
How to Cite
Downloads
References
World Health Organization. Fact sheet on spinal cord injury [Internet]. World Health Organization; 2013. Available:https://www.who.int/newsroom/fact-sheets/detail/spinal-cord-injury [Accessed on: 2022 Dec 27].
Lenehan B, Street J, Kwon BK, Noonan V, Zhang H, Fisher CG, et al. The epidemiology of traumatic spinal cord injury in British Columbia, Canada. Spine (Phil Pa 1976). 2012;37(4):3219.
Notara V, Vagka E, Kotroni A. Health-related quality of life in caregivers of patients with spinal cord injury (SCI): A Greek Review. Int J Caring Sci [Internet]. 2012;5(3):348–53. Available:https://www.proquest.com/docview/1114167600
Guilcher S, Craven B, Lemieux-Charles L, Casciaro T, McColl MA, Jaglal K. Secondary health conditions and spinal cord injury: an uphill battle in the journey of care. Disabil Rehabil. 2013;35(11):894–906.
Krueger H, Noonan VK, Trenaman LM, Joshi P, Rivers CS. The economic burden of traumatic spinal cord injury in Canada. Chronic Dis Inj Canada. 2013;33(3):113–22.
Health Council of Canada. Seniors in need, caregivers in distress: What are the home care priorities for seniors in Canada. Health Council of Canada. Toronto;2012.
National Spinal Cord Injury Statistical Center. Spinal cord injury facts and figures at a glance. National Spinal Cord Injury Statistical Center Web site. Burmingham, AL;2020.
Smith EM, Boucher N, Miller WC. Caregiving services in spinal cord injury: A systematic review of the literature. Spinal Cord. 2016;54(8):562–9.
Collins LG, Swartz K. Caregiver care. Am Fam Physician. 2011;83(11):1309–17.
Middleton JW, Simpson GK, De Wolf A, Quirk R, Descallar J, Cameron ID. Psychological distress, quality of life, and burden in caregivers during community reintegration after spinal cord injury. Arch Phys Med Rehabil. 2014;95(7):1312–9.
Dillahunt-Aspillaga, C. Jorgensen-Smith T, Ehlke S, Sosinski M, Monroe D, Thor J. Traumatic brain injury: Unmet support needs of caregivers and families in Florida. PLoS One. 2013;8(12):e82896.
Angelo J, Egan R. Family caregivers voice their needs: A photovoice study. Palliat Support Care. 2015;13(3):701–12.
Sutton J, Austin Z. Qualitative Research: Data Collection, Analysis, and management. CJHP. 2015;68(3):226–31.
Abu-bonsrah N, Totimeh T, Kanmounye US, Banson M, Bandoh D, Sarpong K, et al. Assessment of the neurosurgical capacity in Ghana: Challenges and Opportunities. World Neurosurg. 2022;167: e953–61.
Morrison EF, Ramsey A, Snyder BA. Managing the care of complex, difficult patient in the medical-surgical setting. Medical-surgical Nurs. 2000;9(1):21–7.
Ae-Ngibise KA, Doku VCK, Asante KP, Owusu-Agyei S. The experience of caregivers of people living with serious mental disorders: A study from rural Ghana. Glob Health Action. 2015;8(1).
Sharma N, Chakrabarti S, Grover S. Gender differences in care giving among family-caregivers of people with mental illnesses. World J Psychiatry. 2016;6(1):7.
Oldenkamp M, Hagedoorn M, Stolk RP, Wittek RPM, Smidt N. The lifelines cohort study: A data source available for studying informal caregivers’ experiences and the outcomes of informal care giving. J Compassionate Heal Care. 2017;4(1):6.
Rattanasuk D, Nantachaipan P, Sucamvang K, Moongtui W. A causal model of well-being among caregivers of people with spinal cord injury. Pacific Rim Int J Nurs Res 2013 [Internet]. 2013;17 (4):342–55. Available:https://he02.tcithaijo.org/index.php/PRIJNR/article/download/8713/11602/27558
Baker A, Barker S, Sampson A, Martin C. Caregiver outcomes and interventions: a systematic scoping review of the traumatic brain injury and spinal cord injury literature. Clin Rehabil. 2017;31(1):45–60.
Sibani CM. Impact of western culture on traditional african society: problems and prospects. Int J Relig Hum Relations. 2018;10(1):56–72.
Dzramedo JE, Amoako BM, Amos PM. The state of the extended family system in Ghana: perceptions of some families. Res Humanit Soc Sci. 2018;8(24).
Attridge C, Richardson H. 6 Compassionate neighbours: an innovative model building caring communities. BMJ Support Palliat Care. 2018;8(3):8–12.
National Academy of Sciences. Coverage matters: Insurance and Health Care. Washington, D.C.: National Academy Press; 2001.
Maz J. The impact of caring for people with Spinal Cord Injury (SCI) on carer’s subjective well-being and physical health: A realist synthesis review. Nurs Healthc Int J [Internet]. 2017;1(1). Available:https://medwinpublishers.com/NHIJ/NHIJ16000105.pdf
Grootegoed E, Knijn T, Da Roit B. Relatives as paid care-givers: How family carers experience payments for care. Ageing Soc. 2015;30(3):467–89.
Ofosu-Poku R. Perspective Chapter: Who Is making decisions? An open letter to healthcare professionals in the developing world. In: Cascella M, Stones MJ, Editors. Suggestions for Addressing Clinical and Non-Clinical Issues in Palliative Care. London: IntechOpen; 2021.
Dorjbal D, Zanini C, Tsegmid N, Stucki G, Rubinelli S. Toward an optimization of rehabilitation services for persons with spinal cord injury in Mongolia: The perspective of medical doctors. Disabil Rehabil. 2021;47(15).
Schulz R, Beach SR, Friedman EM. Changing structures and processes to support family. J Palliat Med. 2018;21 (S2):s36–42.
Asenso-Okyere WK, Osei-Akoto I, Anum A, Adukonu A. The behaviour of health workers in an era of cost sharing: Ghana’s drug cash and carry system. Trop Med Int Heal. 1999;4(8):586–93.
Adofo R. A case of deplorable attitude of Ghana Nurses.True story. GhanaWeb [Internet]. 2010. Available:https://www.ghanaweb.com/GhanaHomePage/features/ACaseofDeplorableAttitude-of-Ghana-Nurses-True-Story-195002
Flinter M. From new nurse practitioner to primary care provider: Bridging the transition through FQHC-based residency training. Online J Issues Nurs. 2012; 17(1):1–12.