DOI: https://doi.org/10.21203/rs.2.11065/v1
At particular stages in life, the child is supposed to have certain abilities such as keeping the head and neck upright in sitting, crawling, rolling, standing and walking. This is known as milestone (1-3).Following Cerebral Palsy (CP), these abilities may be either absent or come much later in comparison with a child without CP (4).Rehabilitation, which is the process of helping people to restore lost function or improve functional independence can help children with CP. However, CP is a long term condition as it results in permanent disorders of movement and posture (5-6).Thus, its rehabilitation may require active participation of the therapists and the caregivers. In Nigeria, rehabilitation services by the therapists are often accessed only in secondary and tertiary facilities in the urban centers, with no or little community rehabilitation services (7). Recently, it has been suggested that, there are opportunities for rehabilitation therapists to play important roles at the primary healthcare level (8).
Caregiver participation in the rehabilitation of children with CP pertains to assisting the children with daily care activities such as bathing, mobility, feeding and dressing (9). When caregivers participate in the rehabilitation of their wards, their participation can provide a more natural environment for the healthy development in physical and psychosocial wellbeing of the wards (10).However, systems of caregiving may differ from one place to another. In Nigeria, caregiving is provided by the family members of the patients. This is in contrast to South Africa where there is an organized community caregiving system, in which care is provided by the community organized by civil societies (11).Similarly, in the western world, caregiving may be provided by the local health community services, families which is some cases encouraged by cash for care and religious bodies (12-13).
Although caregivers may participate in developing strategies to aid with development in children with CP, elsewhere, it was noted that several challenges such as environmental barriers may be encountered (14). Additionally, caregiving was previously reported to cause huge mental and emotional stress as it imposes physical and time demands (15). The aim of this study is to therefore explore the barriers and facilitators of active participation of caregivers of children with CP in the rehabilitation of their children in Kano, Nigeria. Understanding of these two processes may help with devising strategies to either reinforce or improve them during rehabilitation. This is especially because CP prevalence stands at 42% of all paediatic cases in Kano, Nigeria (16).
The study design was qualitative using in-depth interviews to explore the barriers to and facilitators of active participation of caregivers in the rehabilitation of children with CP.
The population of this study was caregivers of children with CP attending Hasiya Bayero Specialists Paediatric Hospital in Kano. In this hospital, children with CP receive rehabilitation by the therapists only once in a week. Purposive sampling technique was used for the selection of the study participants. In this regard, only primary caregivers such as mothers, aunts, uncles, sisters, brothers, grandmothers who are directly involved in taking care of the children were recruited in the study.
For the sample size, there are no hard and fast rules for sample size estimation in qualitative research as this type of study approach maintains some degrees of openness (17).Consequently, the number of participants available was used until theoretical saturation is attained. Theoretical saturation is a situation in which new interviews no longer produce new information or insights (18-19).The data collection instruments used were the study demographic information data sheet, a qualitative interview guide, pen and a notebook/pad and a voice recorder. The qualitative interview guide was practiced first on seven caregivers before the commencement of the main study, and it consisted of the following questions (1) what are the things that hinder you from actively participating in the rehabilitation of your child? 2) What are the things that motivate you or make it easy for you to actively participate in the rehabilitation of your child? Additionally, in each of the above cases/ questions, probing technique to elicit more responses or better understand the responses was used. Ethical approval was sought from Research Ethics Committee of Kano State Ministry of Health. Participants’ consent was obtained after detail explanation of the study to them (this was to seek for their consent and to familiarize ourselves with each other). The consent involved each of the participants signing a consent form.
The study participants were interviewed face-to-face by the interviewer (AA) who has a Masters degree and a certificate in Qualitative Methods and is an academic in Physiotherapy, individually by using the interview guide. The responses of the study participants were recorded using tape recorder and noted by a note taker (AI), the second author who has a Bachelors degree. Both researchers are males. The venue of the interview had other caregivers in attendance; and the duration of the interview sessions was meant to last for between 30 to 45 minutes. The demographic characteristic of the study participants was analyzed using descriptive statistics of frequency, percentage and mean. The responses of the study participants were analyzed using constant comparative analysis, a grounded theory approach (20-21).For the constant comparative analysis, the data was transcribed during the interview, reread, categorized, coded and then connected using matrix analysis. The process of coding for themes was shown in appendix I. All the processes of the analysis were carried out by both, the authors.
There were 40 caregivers of children with CP who participated in the study with mean age, 27 years. The details of the demographic characteristics of the study participants including mean age of the children, occupation of their caregivers, level education of the caregivers and the children and sex are presented in table 1.
Following the transcription and coding of the data obtained from the qualitative interview, several themes were generated for both the facilitators and the barriers. For the facilitators, there are improvements in the child’s condition, family support, improvements in the condition of other children with CP, empathy, encouragement by the therapist managing the child and cooperation of the child during home program. For the barriers, there are number of children the caregiver has, caregiver’s occupation and inadequate financial resources. Figure 1 summarizes the barriers and the facilitators.
The number of children a caregiver has, may impact on the kind of attention she may give to the child with CP. In this society, women usually give birth to many children. In this study, the range of number of children is 6.
“I have other children in addition to this one and they are all young. Thus, they always need my attention, and this makes me some times to delay his home programs”…………….Participant number 6. The age (28 years) and the time taken for caregiving (3 years) of this participant are a bit above the mean age and mean time taken for caregiving of the participants. Additionally, the age of the child (3 years) the participant offered caregiving to, is the same with the mean age of the children.
“As I have told you earlier her mother has died since when she was 3 month; and as you can see me too I have my own baby who is her age mate. But, I have no alternative other than to take her as there is no one to take good care of her other than me as her aunt”…………….participant number 15. The age (31 years) and the time taken for caregiving (3 years) of this participant are above and slightly above the mean age and mean time taken for caregiving of the participants. Additionally, the age of the child (3 years) the participant offered caregiving to, is the same with the mean age of the children.
“As now she have a younger sister so sometimes I have no choice other than to concentrate on her younger sister especially when she is crying and that makes me to skip some of the activities prescribed for her by the therapist”……………….Participant number 38. The age (21 years) and the time taken for caregiving (2 years) of this participant are below the mean age and mean time taken for caregiving of the participants. Similarly, the age of the child (2 years) the participant offered caregiving to, is below the mean age of the children.
Caregiver’s occupation can take some parts of their time, and thus can interfere with the amount of attention they give to the children. Most women in this society are full time housewives with no occupation.
“I used to sell groundnut and palm oil in my house. So, sometimes customers used to distract my attention from her, but I have no option as the business too is important to our life”……………….Participant number 5. The age (24 years) and the time taken for caregiving (2 years) of this participant are below the mean age and mean time taken for caregiving of the participants. Similarly, the age of the child (2 years) the participant offered caregiving to, is below the mean age of the children.
“I am a class room teacher in a primary school. Whenever I am having a class, I used to leave her with a girl that is assisting me in our staff room and sometimes she used to cry before I finish teaching my student”………………Participant number 34. The age (32 years) and the time taken for caregiving (5 years) of this participant are above the mean age and mean time taken for caregiving of the participants. Similarly, the age of the child (5 years) the participant offered caregiving to, is above the mean age of the children.
“I am working in secretariat and whenever I left for work, there is a girl that is taking care of her. But I know she cannot do it as appropriately as I am doing”………………Participant number 31. The age (29 years) and the time taken for caregiving (4 years) of this participant are above the mean age and mean time taken for caregiving of the participants. Similarly, the age of the child (4 years) the participant offered caregiving to, is above the mean age of the children.
Financial resources are adequately required during rehabilitation especially where payments are made out pocket. However, in this community, most people live on under a dollar per day.23
“Three months ago, the Physiotherapist asked us to buy some equipment that we will be using for him at home (for home program). But up to now, we did not buy some of them because of financial issues; but as soon as we get money we will buy the rest of the equipment”………………..Participant number 19. The age (30 years) and the time taken for caregiving (3 years) of this participant are above and slightly the mean age and mean time taken for caregiving of the participants respectively. Similarly, the age of the child (2 years) the participant offered caregiving to, is the same with the mean age of the children.
What makes the caregivers to bring their children for rehabilitation is hope for help. Therefore, when they observe that their children are getting proper help and may be improving, they will be motivated to put more efforts.
“The time we started attending physiotherapy, my child cannot even sit but now he can stand and even walk a few steps. So this motivates me to carry out the activities that the Physiotherapists asked us to do for him at home”……………….Participant number 4. The age (27 years) and the time taken for caregiving (3 years) of this participant are the same with the mean age and mean time taken for caregiving of the participants. Similarly, the age of the child (3years) the participant offered caregiving to, is the same with the mean age of the children.
“It is really encouraging as within the few weeks that my child started receiving Physiotherapy treatment, he can sit for like 3-5 minutes unsupported. He could not sit at the time we first came.”…………Participant number 13. The age (24 years) and the time taken for caregiving (1 year) of this participant are below the mean age and mean time taken for caregiving of the participants. Similarly, the age of the child (1 year) the participant offered caregiving to, is below the mean age of the children.
“It is really impressive that within 5 months of treatment my son can now sit and I am confident that by God grace, one day he will walk and even run like his age mates. That is why I never play with the activities that the therapist asked me to do for him at home”……..Participant number 17. The age (40 years) and the time taken for caregiving (6 years) of this participant are above the mean age and mean time taken for caregiving of the participants. Similarly, the age of the child (7 years) the participant offered caregiving to, is above the mean age of the children.
Help from family members can help reduce stress for the caregivers; and make them recharge and prepare to look after their children.
“Whenever we are asked to use some equipments that will help in the improvement for my child condition, my husband is trying his best to provide such equipments, and whenever he is at home like weekend he used to help me with some home activities like washing clothes. So this is giving me enough time to take care of my child”……………….Participant number 3. The age (31 years) and the time taken for caregiving (2 years) of this participant are above and below the mean age and mean time taken for caregiving of the participants respectively. Similarly, the age of the child (2 years) the participant offered caregiving to, is below the mean age of the children.
“My first daughter is now 18 years old and the second one is 15 years old. Whenever they are at home, they are the ones doing most of the home activities like cooking, and sweeping. So what remains for me is just to take care of my child”……………….Participant number 17. The age (40 years) and the time taken for caregiving (6 years) of this participant are above the mean age and mean time taken for caregiving of the participants. Similarly, the age of the child (7 years) the participant offered caregiving to, is above the mean age of the children.
“Since the time the Doctor told us that our child is having this condition, my husband employed a girl who is helping me with some work at home. So, this motivates me to utilize my time for taking care of my child”………………..Participant number 39. The age (25 years) and the time taken for caregiving (3 years) of this participant are below the mean age and slightly above the mean time taken for caregiving of the participants respectively. Similarly, the age of the child (3 years) the participant offered caregiving to, is the same with the mean age of the children.
Seeing other children with CP who may even have more number deficits than one’s child, may help caregivers to tighten their belts as per as the care for their children is concerned.
“I have been seeing so many children that their condition is worse than that of my child, but as they are attending clinic, their condition is improving. Thus, I am confident that my child will get better. That is why I am taking my time to do the activities that the therapist asked me to do for him.”………………Participant number 33. The age (27 years) and the time taken for caregiving (2 years) of this participant are the same with the mean age, but below the mean time taken for caregiving of the participants respectively. Similarly, the age of the child (2 years) the participant offered caregiving to, is below the mean age of the children.
“My neighbor has a son that has experienced the same condition with my daughter. But now, he is even attending school. So, that is why I have courage that, with time my daughter too will get to that stage. So that is why I don’t joke with anything the therapist says I should do for her”………………Participant number 13. The age (24 years) and the time taken for caregiving (1 year) of this participant are below the mean age and mean time taken for caregiving of the participants. Similarly, the age of the child (1 year) the participant offered caregiving to, is below the mean age of the children.
Encouragements from the therapists are needed in order to boost the morale of the caregivers.
“Before, my perception was my son will never walk like the other children. But the therapist managing him keep encouraging me that one day my child will even run, and he kept citing many examples to me. So those words of his motivate me to concentrate on my child more than anything”………………Participant number 35. The age (26 years) and the time taken for caregiving (3 year) of this participant are below and slightly above the mean age and mean time taken for caregiving of the participants respectively. Similarly, the age of the child (3 year) the participant offered caregiving to, is the same with the mean age of the children.
“The rest of my children can perform some of their activities of daily living by themselves, but this child cannot do anything by himself. So this makes me to pity him and pay more attention in taking care of him”……………Participant number 30. The age (24 years) and the time taken for caregiving (2 year) of this participant are below the mean age and mean time taken for caregiving of the participants. Similarly, the age of the child (2 year) the participant offered caregiving to, is below the mean age of the children.
The way the child cooperates during the time of rehabilitation by the caregiver at home, can make an opportune time for the caregiver to devote their effort in the rehabilitation.
“Whenever I am doing the exercises for her at home, she will not be crying as some of the children are doing. So this is encouraging me to do the exercises for her comfortably without difficulties”……………Participant number 31. The age (29 years) and the time taken for caregiving (4 years) of this participant are above the mean age and mean time taken for caregiving of the participants. Similarly, the age of the child (4 years) the participant offered caregiving to, is above the mean age of the children.
“My child found most of the exercises enjoyable especially the rollator. So, whenever I am doing the exercise for him he doesn’t even want me to stop. So this is motivating me to do it well for him as he is enjoying it”…………….Participant number 36. The age (24 years) and the time taken for caregiving (2 year) of this participant are below the mean age and mean time taken for caregiving of the participants. Similarly, the age of the child (2 year) the participant offered caregiving to, is below the mean age of the children.
“As my child is co-operating during the exercises- nothing like crying, I find it encouraging; and enjoyable to do the exercises for her”………………Participant number 7. The age (27 years) and the time taken for caregiving (4 years) of this participant are the same with the mean age and above the mean time taken for caregiving of the participants respectively. Similarly, the age of the child (5 years) the participant offered caregiving to, is above the mean age of the children.
The aim of the study was to explore and identify the barriers and facilitators of caregivers of children with Cerebral Palsy in the rehabilitation of their children. The results showed that the barriers are number of children, caregiver’s occupation, and lack of financial resources. The facilitators are improvement in the child condition, family support, empathy, improvement in the condition of other children with cerebral palsy, encouragement from the therapist managing the child and co-operation of the child during the home program. Since number of children can add more strain and stress to a caregiver, it is therefore important for the therapist to counsel caregivers to do adequate child spacing in order to give adequate attention to the child with CP. This is more so as the caregivers in the present study are still young, and may have potentials to give birth in many for many years. Additionally, since help from the family is a facilitator, and it was previously reported to be a primary source of support for caregivers (22);therapist should devise strategies to reinforce it. This can come in form of division of labour whereby one member of the family can do one thing for the child during a particular time, and another some other time.
For lack of financial resources, it was reported previously that, low income is associated with increased caregiver burden (23-24). Additionally, cost of care can add more strain to the caregivers (25);especially where the bills are paid through out of pocket payment. However, CP is a long term condition, and it requires care in the long term that may cost huge financial resources. Therefore, governments need to make health services free or subsidize the cost of rehabilitation through enrolling children with CP in National Health Insurance Scheme (NHIS). For now, for instance in Nigeria, the enrollment seems to be restricted to only Government employees and to some extent, students in tertiary institutions who comprise just a small percentage of the population. In contrast, in the United Kingdom, health care services are largely free (26);and in 2005, out of pocket payment accounted for only 11.9% of total expenditure (27).Another barrier is caregiver’s occupation which can limit the time the caregivers can devote in rehabilitation of the children. Although, there is assistive technology such as Switching that can help decrease caregivers’ effort, energy expenditure and burden (28-29);the technology is relatively costly and needs time and skills to operate. Consequently, it is important for therapists to devise other simple and affordable means such as reinforcing family support. Family support or social support can help reduce caregiver stress (24).This family support can come in form of sharing responsibilities among spouses and members of the household or engaging a paid caregiver if it is possible.
Improvement in the child’s condition during the rehabilitation program is one of the most important facilitators that motivate the caregivers to put more effort in the rehabilitation of their children with CP. As reported in a previous exploratory study, mothers of children with CP value and recognize the benefits of Physiotherapy, and they believe that, it is important that the therapy continues (29).Therefore therapists need to do more to invest in research and professional skills in order to improve the conditions of children with CP. Similarly, even improvement in the conditions of other children with CP other than their own that may even have more number of deficits than their children may motivate them to put more efforts in the process of rehabilitation of their children. Number of deficits is associated with increased caregiver burden (24). Consequently, group therapy, whereby a number of children can have their rehabilitation sessions at the same time may help foster confidence in the caregivers of children with CP.
Other facilitators that need to be reinforced by the therapists during rehabilitation include empathy and encouragement by the therapists themselves. According to Cerebral Palsy Guide, empathy is greatly required in the process of care for a child with CP (30).Similarly, though encouragement from the therapist is greatly required, it needs to be specific, measurable, actionable, realistic and time bound (SMART). This is to prevent the caregivers from having unrealistic hope. Therefore, it is important for the therapists to devise means of improving the barriers as well as reinforcing the facilitator during rehabilitation. Additionally, government needs to make healthcare services for children with CP either free or subsidize them through enrolling them in the National Health Insurance Scheme. Furthermore, therapists in collaboration with the family needs to ensure that, there is adequate child spacing in order for the family to cater for the needs of the child with CP
We would like to thank our study participants for their invaluable time.
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[The table could not be inserted due to technical limitations. It can be found in the Supplemental files]