Treatment Experiences and Social Construction of Disability Among People Affected by Spinal Cord Injury in Ibadan Metropolis, Nigeria
Author: Kafayat Aminu, bolkaf@yahoo.com
Department: Department of Sociology
University: University of Ibadan, Nigeria
Supervisor: Professor A.S. Jegede
Year of completion: 2021
Language of dissertation: English
Keywords:
Spinal Cord Injury
, Social Construction
, Treatment Experiences
, Disability
Areas of Research:
Clinical Sociology
, Health
, Body in the Social Sciences
Abstract
Spinal cord injury (SCI) is a life-altering health condition. Everyone is susceptible to SCI, especially the economically-active individuals. Despite the long-term care burden and its biopsychosocial complications, only clinical and epidemiological studies of SCI have dominated literature, while the treatment experiences of Persons Living with SCI (PLWSCI) and their informal caregivers, including their social construction of reality, have been under-researched in the developing countries. This study therefore investigated the treatment experiences and social construction of disability among people affected by SCI in Ibadan, Nigeria.
Social Construction Theory provided the framework. The study adopted a cross-sectional hospital-based design and mixed-methods of data collection. The University College Hospital (UCH), Ibadan was purposively selected being a tertiary hospital with a high number of SCI cases. All the participants were purposively sampled. Questionnaire was administered on 108 informal caregivers. Thirty in-depth interviews were conducted with PLWSCI and 30 informal caregivers to understand their subjective construction of disability, life changes due to SCI, different care options explored, in-patient and out-patient care experiences, challenges and coping behaviours. Twenty-five key-informant interviews were also conducted with healthcare professionals (15), traditional healers (6) and spiritual leaders (4). Qualitative data were thematically content-analysed, while quantitative data were analysed using descriptive statistics.
Age of PLWSCI was 39.2 ± 10.3 years, majority were male (70.0%), married (53.3%) and paraplegic (66.7%). The mechanism of most injuries was road traffic crashes (73.3%). Most informal caregivers were female (74.1%), married to PLWSCI (41.7%) and low-income earners (72.0%). Most domains of in-patient (92.3%) and out-patient care (96.0%) at UCH were deficient in informed consent, care coordination and clientele involvement in care. Informal caregivers and PLWSCI reported high cost of care, stress of caregiving, long waiting hours, non-availability of consumables, negative attitudes of some UCH medical staff and missing hospital file. Informal caregivers coped through endurance (32.5%), faith in God (23.7%) and family support (13.7%). PLWSCI adopted spiritual, interpersonal, physical, and avoidance coping mechanisms. PLWSCI also coped by using positive re-framing, social support, endurance and problem-solving methods. Lives of PLWSCI were disrupted through challenges in activities of daily living, loss of independence, difficulties returning to employment and low subjective wellbeing. Community reintegration and fulfilment of traditional roles were difficult for PLWSCI. PLWSCI had suicidal ideations. The informal caregivers were overburdened by the stress of hospital procedures. Families of PLWSCI experienced a high economic burden and decreased standard of living. The pattern of healthcare-seeking for spinal cord injury began in the hospital. Different therapeutic options were simultaneously sought during and after hospitalisation. The social construction of reality by PLWSCI occurred in phases: confusion, positive expectations, acceptance/denial and re-construction of prognostication.
Spinal cord injury-related disability was subjectively constructed as temporary and conceptualised as beyond Western medicine, hence the recourse to different therapeutic options during and after hospitalisation. Service delivery should be patient-centred while government should subsidise all aspects of spinal cord injury care to minimise the financial burden on the affected families.
