The individual or personal factor’s theme describes the factors which participants perceived influenced their dignity as a person or sense of who they are now that they have a TSCI. The factors included personal resources, functional difficulties, acceptance, gender, spirituality, and complications.

Subcategory 1.1: Personal resources were of paramount importance for the informants to achieve a satisfactory life situation. All 19 informants reported previous self-employment or salaried or part-time employment.

However, at the time of the study, all except two (Participant 7 and Participant 9) were not earning any income and instead were dependent on their family members. Having no income not only affected their self-dignity but also their independence. Those who had an income still expressed financial concerns because of the increased living expenses when living with a disability. It was pointed out by one informant:

Income insufficiency amongst TSCI affects life in all ways, from meals, housing, rehabilitation, availability of caregivers, transport, and socialisation. Not having any income was seen as the biggest challenge, and informants felt that earning income would solve most of their problems (Participant 1 – Participant 19).

Subcategory 1.2: Functional difficulties because of the extent of the injury were another personal factor that affected ‘dignity’. These were either because of physiological or anatomical impairments. These impairments led to limited activity and participation restrictions for the participants and affected their execution of daily tasks. Failure to execute tasks leads to participation restriction. Informants reported failure in getting employed because of functional impairments. This was frustrating, especially if that person had the task of being the breadwinner for the family, which led to a feeling of worthlessness and despair, ‘I cannot turn in bed, cannot take myself to the toilet, I no longer work. I better die because I am useless your no longer productive’ (Participant 1). Another informant (Participant 3) compared his ability before and after injury: ‘It’s painful comparing yourself before and after injury; I have tried to take my life two times’. The same informant added, ‘Its hurtful, sometimes you have to go into your house and cry, weep and come out and life continues’.

Suicidal thoughts were common during acute care; these were mentioned by Participant 8 and Participant 19. They reported feeling worthless, having fluctuating moods, depressive thoughts, and consequently feeling a need to take his or her life.

Subcategory 1.3: Acceptance was seen as an important personal factor. To the informants it meant ‘accepting yourself as you are’ with your limitations but being forward-thinking, focused, courageous, and seeing there is life after injury. This attitude greatly influenced self-worth, as reported by one female informant (Participant 13) with paraplegia: ‘They have to accept their situation; otherwise, they will depress … develop complications, it will be worse, forward thinking as long as your alive keep focused’. Acceptance was described as a situation of settling down and accepting living within their abilities. TSCI is an abrupt event, and acceptance takes time. Those who reported depression and non-acceptance of their condition later adapted gradually and, on average, by 6 months had identified themselves as people with disabilities with hope they could earn a living:

Subcategory 1.4: Gender was another personal factor that impacted ‘dignity’. Whether one is male or female can influence expectations about one’s role in the family or in society. For example, being a woman with TSCI might lead you to losing your partner or, if not married, not getting married. One female informant said:

Conversely, unmarried men reported minimal or no hope of marrying. Some said this was because of sexual dysfunction and others being looked at as physically unable. A male informant (Participant 10) who had plans of marrying his fiancé in 3 months after the injury said:

Subcategory 1.5: Spirituality was another personal factor described by the informants. They emphasised that when they feel no one can change the status quo, then the remaining option is to turn to God; one needs to believe and leave the rest to be attended to by God. ‘I imagine I should call God because I hear that he is the one who gives us everything because the world robbed me of my back’ (Participant 3). It is likely that following a traumatic and life-changing event, for some, this might lead to ‘injury’ to their faith, whilst, for others, the experience strengthened their faith. It was reported by participants that sometimes health professionals use spirituality to explain or believe why patients are not regaining their ‘normality’, as revealed by one young informant:

The comments generally offered a feeling of how spirituality is deep-rooted in the Rwandan community, where they say above all there is God. One informant described how he had developed suicidal thoughts instead of waiting for the last resort, which is God’s choice: ‘… I said to myself I should think of ending my life instead wait for what God will do for me …’ (Participant 4).

Subcategory 1.6: Complications were also seen by informants as a personal factor. Psychological and medical complications were common experiences such as depression, suicidal thoughts, feelings of worthlessness, and feelings of lack of confidence in accomplishing tasks, which otherwise they were capable of doing. In particular, some informants reported pressure ulcers and urinary and bowel incontinence. One informant discussed how incontinence strains his limited income, and he has multiple psychological and medical complications. He is a 35-year-old male nurse with a C4 injury:

This theme concerns all the relationships an individual has, including those with family members and those with neighbours or coworkers. The ‘dignity’ of the person with disability was strongly affected by attitudes and support from families, friends, and the society, which either facilitated or hindered the experience of inclusion in the community.

Subcategory 2.1: People with TSCI in this study who have supportive families, relatives, spouses, and siblings reported relatively better life experiences:

Some informants reported declining family support with a decrease in the frequency of hospital visits when they were in acute care, and some even reported being abandoned when they had longer hospitalisations. A lengthy hospital stay is a barrier for these individuals since the patient cost of care, other than medical care, is essentially a family matter in Rwanda. One participant said, ‘initially many people visited me at the hospital but gradually people reduced in number’.

Subcategory 2.2: Those who received support from neighbours, friends, and initially workmates had a feeling of inclusion and being a useful member of the community.

For example:

In contrast, informants whose families or friends were not supportive either depended on hired care givers (if they could afford this) or were left to the mercy of social welfare services from the hospital and other caregivers.

One informant described the double burden of having been interactive and friendly but all of a sudden being abandoned by friends and family because of the TSCI:

Participants report broken social ties because of the injury, as is reported by a 72-year-old male with tetraplegia, who had established himself as self-employed with planned retirement income and said:

Participants described how some members of the community use inappropriate language whilst referring to or relating with people with disabilities. The use of derogatory or inappropriate language may amount to discrimination. This affected individuals’ confidence and deterred people with TSCI from participating in social activities. One informant narrated how he faces barriers in implementing home exercise programmes because of neighbours’ attitudes, including inappropriate language:

The community-related factors described by the individuals in this study included physical environment, community attitude, inappropriate mobility devices, and policies (i.e. health insurance and system inefficiencies).

Subcategory 3.1: Physical environment. The physical environment of the home was discussed as a barrier for some informants who would otherwise be independent in mobility and home activities. Often, the limitations were evident amongst individuals reporting stairs in the kitchen, doors, toilets, and backyards. Stairs were discussed as obstacles for otherwise independent people such as those with TSCI with low paraplegia who are using crutches and those using wheelchairs, ‘I entirely depend on wheelchair for mobility and it cannot go through the doors of this house, at the kitchen, toilet and bathroom entrance there are steps’ (Participant 7). Another informant who was improving from incomplete tetraplegia narrated how stairs at his house, his neighbours’ and at his workplace are a barrier:

Another female informant told how her home compound nearly kept her totally indoors:

The same informant stressed how the physical environment surrounding her community increased her cost of rehabilitation. Because of poor roads, she needs a private car to pick her up from her house to go to the rehabilitation centre. The poor roads increased the car hire charges: ‘going to the hospital was expensive, private taxi drivers would charge highly or refuse because the road was bad’ (Participant 13). These people were confident that their physical capacity allowed them to engage in basic activities like preparing their meals, accessing the toilet, making their rooms, and doing other home errands.

However, because of inaccessible home and community physical environments, they depended on their significant others for these activities.

Inaccessible physical environments in society and at home were one of the major barriers for the informants with regard to living a meaningful life, feeling included, and being independent.

Subcategory 3.2: The overall community attitude had an impact on these participants. The community physical environment and use of devaluating terminologies often lead to excluding people with disabilities from participating in real-life situations in their society. Devaluing attitudes towards persons with disabilities was evident, and it was thought to be partly because of old traditional belief systems held mainly within the older generations. However, the frustration participants felt with the attitude was reported to lessen with time after the acute period. Informants reported that, on average, it took 6 months living in the community until habituation and acceptance occurred. In the words of one participant:

Subcategory 3.3: Inappropriate mobility devices. Participants reported inappropriate mobility devices, especially wheelchairs and crutches. They pointed out that wheelchairs are either too small or too big and not terrain appropriate. Most of the wheelchairs are donated by charity organisations and constructed for use on different terrain. The informants’ compounds are mostly muddy or uneven, and this makes it difficult to use the donated wheelchairs that were made for a different terrain. ‘I was given a small wheelchair; people take measurements but return with inappropriate wheelchair … My first wheelchair was too small for me …’ (Participant 13).

Subcategory 3.4: Public policies. Informants described how existing public policies led to difficulties for those with TSCI because of reduced accessibility. For example, public building policies specifically regulated physical accessibility to public offices, banks, malls, courts of law, schools, and universities. The challenge was raised by informants seeking the aforementioned services and rights:

Subcategory 3.4.1: System deficiencies in transportation. System deficiencies were cited primarily as shortages of a disability-friendly transport system. This was cited as a barrier for informants who are wheelchair users and who wanted to be mobile, work, and earn a living:

Another informant stressed the inconvenience faced in relation to transport:

Subcategory 3.4.2: Health insurance coverage. Health insurance was rated as highly helpful by almost all informants to access health care. It was rated as a facilitator by all the participants. Given the different health insurance plans in Rwanda, participants preferred public health insurance to private because public health insurance continued to pay their bills even when the beneficiary was no longer working. Private insurance stops with your work contract. However, a number of issues were raised in relation to health insurance; there are certain bills the insurance plans do not pay, ranging from wheelchairs to limitations in the number of sessions of rehabilitation. This is reflected in one of the discussions with an informant who was a complete paraplegic and had to depend on a wheelchair for mobility for the rest of his life: ‘there are things that community based health insurance (CBHI) does not cover like; wheelchair, orthoses, crutches, meals’ (Participant 4). Some insurance plans do not cover beyond a certain level of health care; tertiary and private hospitals versus only primary health care. As one of the informants stressed:

The burden of private insurance was described by one participant, a university graduate working with a private company, who was now a complete high paraplegic and no longer employed:

Pre-injury context was raised by some participants who pointed out that one’s previous health, financial, and social status would affect post-injury wellbeing. One participant pointed out how her pre-injury status influenced her immediate effects of TSCI whilst in acute care:

Participants link negative incidents or events that happened in early life with their current situation that are because of totally different causes. If this type of event existed prior to the injury, it may greatly affect the psychological health of TSCI survivors. The situation could lead to self-isolation and consequently social exclusion, as described by one informant who had previously had a child at a young age:

Informants reported previous domestic violence, either from parents or a spouse, as a big barrier to accepting their situation and meant not getting any family support. Domestic violence and suicidal thoughts looked like ‘twins’. They were often reported concurrently by the same people. A case in point is a 27-year-old participant who was a casual labourer and now has complete paraplegia. His parents were always fighting:

Having a condition in common with others was raised by participants as a motivating factor. Having a common condition would demystify what happened to them, offer hope for the future, and promote acceptance. Informants stressed that they felt better when they were at the rehabilitation centre with colleagues who had similar conditions rather than at home, where there was either nobody who checked on them or he/she was the only one who could not stand and walk. Participants had a number of reasons why they preferred staying with colleagues with similar conditions, including staying away from people who knew them before injury, peer counselling, seeing the possibility for improvement, and hiding from unfriendly society: