Spinal Cord Injury (SCI) is a devastating life threatening condition that affects every aspect of life, including the physical, social, and psychological health of affected persons [
The study was completed as part of the requirements for a Master of Philosophy programme (Nursing) for the first author to explore the lived experiences of persons living with SCI. The study employed a descriptive qualitative design [
The study was conducted in the Tamale Metropolis which is the largest city in the three northern regions of Ghana and the third largest metropolis in the country. The Metropolis is one of the 26 districts in the Northern Region. It is located in the central part of the Region and shares boundaries with the Sagnarigu District to the west and north, Mion District to the east, East Gonja to the south, and Central Gonja to the southwest. It has a population of 360,579 according to the 2010 Population and Housing Census. Unlike the southern part of Ghana where cars and minibuses called “trotro” are the major means of transport, the major means of transport for residents in the Tamale metropolis is with motor bicycles. This has led to high prevalence of cases of SCI according to anecdotal evidence at the Tamale Teaching Hospital.
Data for the study was collected mainly through face-to-face in-depth interviews. The purpose of the study was to explore the lived experiences of persons with SCI, and therefore interviews were the best data collection method to gain this understanding. The participants were recruited through the purposive sampling technique. Fliers specifying the purpose of the study were given to participants by nurses in the neurosurgical unit of the hospital. Participants who best met the inclusion criteria of having a SCI, being eighteen years of age or over, and ability to communicate in English or Dagbani (a local dialect) were contacted by the first author to explain the purpose of the study to them. The participants were subsequently recruited for the study following an informed consent. Interviews were conducted with the aid of an interview guide. The interview guide explored four major areas (background information; physical experiences; psychological experiences; and social experiences), through the use of twelve (12) open-ended questions. The questions were developed based on the objectives of the study and the research questions. The interviews were conducted by the first author in English and/or Dagbani (local dialect) because these were languages that the participants understood and could speak fluently. The interviews lasted for approximately 45 to 65 minutes and were tape-recorded with permission from the participants. The interviews were also conducted at the participants’ preferred time and were completed in a private room to ensure privacy. The first author used flexible open-ended questions and intentional silence during the interviews to allow participants to express their thoughts. The first author also took field notes of all nonverbal communications during the data collection process to ensure that every aspect of the data was captured and to help in the analysis.
Data from the study was analyzed concurrently with data collection using content analysis [
The researchers maintained data trustworthiness in the study by employing the concept of credibility, transferability, dependability, and confirmability [
The study was reviewed and approved by the Institutional Review Board of the Noguchi Memorial Institute for Medical Research, University of Ghana, with IRB number 00001276. It was subsequently approved by the research unit of the Tamale Teaching Hospital with reference number, TTH/R&D/SR/16/190. In addition, the purpose, objectives, and any potential benefits and risks for participating in the study were explained to participants in the local dialect (Dagbani) or English a few days prior to data collection. This allowed participants enough time to consider their participation. Participants who met the inclusion criteria and agreed to take part in the study were asked to give their consent by signing or putting their thumb print on the consent form. Participants were also informed that they could decline to participate or withdraw from the study even after they had signed the consent form without any consequences. Again, the permission to record the interviews was sought from each participant who agreed to participate in the study. All applicable institutional and governmental regulations concerning the ethical use of human volunteers were followed during the course of this research.
The age range of participants was from 24 to 72 years with a mean of 50.5 years. Nine (69.2%) of the participants were males and four (30.8%) were females. Two of the participants were Christians (15.4%) and the rest were Muslims (84.6%); ten (77%) were married and three (23%) were single; eight (61.5%) had formal education and five (38.5%) had no formal education. Also, eight of the participants sustained their injury from road traffic accidents, three from tumour, and two from unestablished aetiologies. Participants have had their injuries for about 6 months to 5 years (Table
| | |
---|---|---|
| 50.5 | |
< 40 years old | 4 (30.8%) | |
≥ 40 years old | 9 (69.2%) | |
| ||
Male | 9 (69.2) | |
Female | 4 (30.8%) | |
| ||
Muslim | 11 (84.6%) | |
Christian | 2 (15.4%) | |
| ||
Married | 10 (77%) | |
Single | 3 (23%) | |
| ||
Educated | 8 (61.5%) | |
No Formal Education | 5 (38.5%) | |
| ||
< 2 years | 3 (23%) | |
≥ 2 years | 10 (77%) |
In order to ensure anonymity and confidentiality, participants’ real names have been replaced with pseudonyms in this manuscript. The three (3) main themes that emerged from the data were
The physical effects that participants endured following their injury were
All the participants in the study reported pain of varying degrees as part of the physical ramifications of their injury. Pain was the most devastating symptom they endured and it had a ripple effect on their mobility and functioning. Close to half of the participants reported that their pain had become chronic. Gariba described his pain in the following passage:
Mariam attributed her inability to perform her marital duties to the chronic pain she endures. She echoed:
In addition to influencing their functioning, participants also reported that the pain they endured did not respond to pain medications. Alhassan described his experience:
Also, as part of their physical experiences, some of the participants interviewed reported an inability to control their urine and feces following their injury. These participants identified the bladder and bowel incontinence as their most devastating health problem. It had a negative effect on their religious faith and social life. Adam had this to say:
The participants with bladder and bowel incontinence also cited the high cost of dippers as some of the challenges they faced in the management of the bladder and bowel problems. Nana had this to say:
In addition to incontinence, a significant number of the participants reported experiencing pressure ulcers. The participants attributed the cause of their pressure ulcers to immobility and irregular turning in bed during hospitalization and, also, on the lack of health education prior to discharge related to care at home. Some of the participants had to live with the ulcers for months while others had to delay therapies to allow the pressure ulcers to heal. Peter shared his experience in the following passage:
Adam lived with pressure ulcers for almost 8 months. He blamed this on lack of health education by the health staff, prior to discharge. He had this to say:
Another physical ramification reported by participants was neurological symptoms. The majority of the participants reported partial to flaccid paralysis of their upper and lower limbs and loss of sensation and stiffness following their injury. The participants also reported varying levels of immobility as a result of the paralysis and loss of sensations. Two (2) of the participants are still completely bedridden with no residual strength for mobility. Gariba is confined to a wheelchair for the rest of his life due to paralysis following his injury. He shared his experience;
The psychological effects that participants endured as a result of the injury included
The majority of the participants reported that they were saddened by the injury and the resultant consequences on their entire life. Some of these participants identified the sudden occurrence of the injury and the resultant paralysis and immobility as the major cause of their worry while others attributed their anxiety to the high cost of treatment and fear of remaining in a wheelchair for the rest of their lives. Peter had paralysis after his injury and was worried about the possibility of remaining in the wheelchair for life. He had this to share:
Alhassan also lamented the suddenness of his condition and its negative impact on his life and job. He shared his experience:
In addition to the anxiety, participants with paralysis and complete immobility also reported that society now perceived them as disabled persons as a result of their physical limitations. The participants further reported that they received favors from people especially during functions because of the societal perception of them.
Zack shared his ordeal:
Peter also believed that society sympathized with him wherever he went because they saw him as a disabled person. He noted:
Participants reported various levels of self-adequacy with some expressing higher morale and perceived abilities to return to work than others. It was revealing to note that employment status rather than the physical health of the participants appeared to contribute to higher self-adequacy beliefs of participants. Participants with gainful employment or on sick leave with pay expressed more desire and willingness to resume work than those without employment. Adams was a teacher before his injury rendered him bedridden. He wanted to go back to the class room because he still believed he had something to offer society despite his complete paralysis and immobility. He said:
In contrast to the above, participants without jobs after the injury expressed less motivation to return to work or secure a new job, regardless of their physical state of health. Although Zack had regained his mobility at the time of the interview, he still felt he was not fit enough to take up a job and depended on his sons for living. He lamented;
The participants reported a number of societal factors including support, neglect, marital and spousal problems, and impaired participation that promoted or hindered their adjustment to the injury.
The majority of the participants received some form of support from family, friends, spouses, and institutions. They acknowledged that the support received from these sources contributed significantly to their recovery and adjustment to the injury. Among the married participants, spousal support was identified as the most important form of support and took primacy over other forms of support. The majority of the unmarried participants identified support from friends and family as the most valuable form of support they received. A few of the participants also reported that the ties between them and their families deepened in the aftermath of their injury. Sule identified his wife as his main source of support and inspiration. He shared the following:
Adam was a single 31-year-old man. He believed he had been lucky with friends:
A few of the participants reported that they had been jilted and neglected by family members and loved ones following their injury. These participants questioned why family relatives and loved ones could turn their back on them simply because they suffered a SCI. Some of the participants mentioned that just a few of their friends and relatives still remembered them occasionally, while a few others had completely lost touch with family and friends after the injury.
Gariba had been neglected by both family and friends. He expressed his sorrow in the following passage:
He continued:
Quite a number of the participants reported suffering romantic disappointment after their injury, with the majority of the unmarried participants reporting more romantic disappointments from their fiancés than the participants that were married. Alhassan was jilted by his fiancé in a relationship that took him close to eight years to build. He narrated:
Some of the participants who were single expressed interest in marriage but cited societal views and financial constraints as some of the reasons that keep them from venturing into marriage. Adam lamented:
In addition to romantic disappointments, four of the participants (3 males and 1 female) reported an erectile or sexual dysfunction after the injury. Two of the participants attributed their sexual dysfunction to the chronic pain they endured after the injury. Wumbei shared his experience:
Mariam also attributed her inability to perform her matrimonial duties to the chronic pain she endured. She explained:
In addition, the participants in the study also verbalized that they were unable to partake in physical activities and other social functions such as weddings, funerals, and naming ceremonies. They cited challenges with mobility, pain, and bladder and bowel incontinence as the reasons for their inability to exercise and to attend social functions.
Mariam had to stop attending social gatherings because of her difficulties with mobility. She narrated:
Adam had bowel and bladder incontinence and as a result he did not mingle with people because of fear of embarrassing himself in public. He bemoaned:
To the best of our knowledge, this was the first study that explored the lived experiences of persons with SCI in Ghana. The findings revealed that persons with SCI suffer physical manifestations such as chronic pain, bladder and bowel incontinence, immobility, pressure ulcers, and neurological symptoms that have enormous consequences on their functioning and general wellbeing. These findings concur with other studies that examined the experiences of persons with SCI [
The majority of participants of our study identified pain as the most devastating health problem that negatively affected their mobility and functioning. This finding again adds to the ongoing debate on the effects of pain on the functioning among persons with SCI. While in tandem with our findings, several studies have reported a significant relationship between pain intensity and activity of daily living among persons with SIC [
In addition to the negative effects of pain on the functioning of participants of the present study, a number of the participants also reported that their pain was not responsive to pain medications that were prescribed for them at the hospital. This compelled some of the participants to abandon their pain medications and to seek other remedies in dealing with their pain. In support of this finding, Henwood and colleagues [
More so, our participants reported bladder and bowel incontinence as part of their physical experiences, with a significant negative effect on their participation. A few of the participants verbalized that they were unable to socialize with others in society and were unable to meet their religious obligations as a result of the bladder and bowel incontinence. Previous similar studies have also reported on the negative effect of bladder and bowel problems on the social life of persons with SCI [
To add to the above, a few of the participants in the present study also developed pressure ulcers after their injury. The participants reported that they developed the pressure ulcers while on admission at the hospital. Contrary to the current finding, Gould and colleagues [
Besides the physical ramifications of SCI, the findings of the present study also revealed a number of negative psychological outcomes as reported by the participants. These psychological outcomes included anxiety, perceived disability, and low self-efficacy. In narrating their anxiety, some of the participants identified the sudden onset of their injury and the accompanying symptoms as the major cause of their anxiety. A few participants attributed their anxiety to fear of remaining in a wheelchair for the rest of their lives, while others identified the loss of their businesses after injury and the resultant financial difficulties as the main source of their anxiety. High levels of anxiety among persons with SCI have been reported in previous studies [
The participants also shared a number of societal related factors that promoted or hindered their adjustment to the injury. These factors included “support,” “neglect,” “marital and spousal problems,” and impaired participation. As a result of the debilitating physical symptoms that participants endured, the majority of them sought the support of family members, friends, and spouses, to adjust to their injury and to meet their basic needs. The participants acknowledged that the support they received impacted positively on their adjustment to the injury. The need for social support for persons with SCI is well documented in the literature [
Although the majority of the participants received support, some other participants reported being neglected and jilted by their friends, families, and loved ones following their injury. Some of the participants revealed that the bond that existed between them and their family members and friends had deteriorated following the injury. Similarly, in a study to assess the impact of SCI on South African youth, Njoki et al. [
On social participation, the majority of the participants of the current study verbalized that they were unable to partake in important social events such as weddings, outdoorings, funerals, and other festive occasions that are common in Ghanaian society. Some of the participants cited bladder and bowel incontinence as the major physical health problem that hindered their socialization and participation in social events while others mentioned immobility and chronic pain as the factors that limited their participation in social functions. This finding is consistent with previous studies on participation in SCI [
The findings suggest that spinal cord injury is a life threatening condition and that persons with the condition grapple with a myriad of physical symptoms ranging from chronic pain and paralysis of lower and/or upper limbs, to bladder and bowel incontinence. These physical symptoms impact negatively on the psychosocial life of affected persons and their overall quality of life. Future research involving larger samples and employing different methodologies would further illumine our understanding of the experiences of persons with SCI and the impact of such experiences on their overall functioning and quality of life.
The data used to support the findings of this study are available from the corresponding author upon request.
The authors declare no conflicts of interest.