The first domain, background/context, relates more to the social and economic characteristics of the setting where caregiving takes place. Our findings depicted contextual sociocultural issues and economic status of caregivers impacting their caregiving experience as described in subsequent sections.
Sociocultural challenges
The sociocultural issues pertain to society’s cultural and intuitive beliefs about CP and its impact on caregivers. Caregivers reported how they perceived that individuals within society were often hostile to them, challenging their ability to live with their children with CP. In particular, caregivers mentioned how other members within their community often stigmatised them and had misconceptions about CP, including how it might have been caused. For example, one caregiver of a 2-year-old child with CP explained how attending social gatherings was a challenge due to the negative language used to describe her child as not human but animal:
Whenever there is an ‘occasion’ (marriage, naming ceremonies and funerals), I do not go because of how they treat the child; I do not like it. People will just be calling her all sorts of names, saying she is not human, so I should not waste my time on her. (P11, caregiver of a 2-year-old girl)
One mother enunciated how she felt the subject of ridicule—describing how she believed that some members of the community intentionally questioned her on things they knew her child could not do. Furthermore, this same mother recounted how she and her child were even seen as having something that might be ‘caught’ or infectious with others purposely not sitting near her on public transport:
We are now laughing stock to most people, some people know what the child is going through, and they will see you and intentionally ask you, so your child is still not walking ‘Penh’? Sometimes in a car like this, they do not even want you to sit closer to them, or the child should touch them… (P6, caregiver of a 2-year-old boy)
Similarly, some caregivers mentioned how they felt discriminated against even by their relatives who would not allow their own children to interact with a child with a disability in case it might be infectious. Thus, the child and caregiver could not freely relate with others due to emotional trauma and stigmatisation from others. Such constraints encountered by caregivers observed in their sample narrations are as follows:
As for discrimination, it exists. Some relatives do not allow their children closer to my child because they feel he is not normal. (P5, caregiver of a 7-year-old boy)
It was shocking to hear that one caregiver even described how much community members stigmatised children with CP—believing that CP results as a punishment from ‘the gods’ and furthermore, that children with CP are ‘spirits and not human’. This emerged in caregiver’s verbatim as emotionally very painful, leading some caregivers to seek cures through traditional healers to better understand whether their children were ‘spirits’ or ‘possessed’.
Others make insulting remarks like this your child is not a human being. We have even visited a shrine on several occasions because of that… They will give herbal preparation to bathing the child; if he is not human, he will die after bathing those herbs. But after bathing him, it is clear that he is not what they were thinking of. (P3, caregiver of a boy 4 years and 9 months)
Economic status
The caregivers in this study described through their interviews that their sources of income were interrupted, and they had financial limitations in meeting the child’s care needs. Having a child with CP means having an expenditure line inconsistent with routine household expenses, thus raising the cost of the family’s budget. Most caregivers, employed and unemployed, described their experience of having increased expenditures due to buying medications and assistive devices, transportation costs, laboratory investigations and food buying. The latter placed an extra financial burden on caregivers who may not also receive financial support as there is no clear, steady formal support for the vulnerable in Ghana. An example of experiences that were enunciated by caregivers include:
…I am supposed to be coming for review once every week, but because of the cost of transportation, I have made it once every two weeks. (P6, caregiver of a 2-year-old boy)
In this place (referring to the physio unit), I was told that health insurance would cover some part and you would also pay the rest after … sometimes. ‘Hmmm’…. It is not easy… I have even stopped the neurological consult because you have to pay for the consultation and still buy the drugs. After all, the hospital does not always have them. (P10, caregiver of a 4-year-old boy)
Besides the increased expenditure, caregivers’ economic situation was reportedly worsened when they could no longer engage in income-earning activities. Participants’ reports show that the caregiving demands of their children led to abandoning their employment as they could not combine the care of the child, which is a full-time job, with their income-generating activities, as shown in the quotes from participants:
I am no longer employed and cannot do any work again. I worked in a private hospital before I gave birth, but now this child is like this. I have stopped my employment because he has this problem (cerebral palsy). (P10, caregiver of a 4-year-old boy)
I am no longer in business because I can’t be holding him while preparing my local drinks, and there is no one to help. Where will I be getting money for his care? (P3, caregiver of a boy 4 years and 9 months)
Many of the caregivers who were initially engaged in personal businesses for income had their businesses collapse because they did not have time to continue trading. Other caregivers stopped because of the stress of juggling childcare and business. Caregivers were then left to deal with the effects of these income cuts and rising expenditures.