Titles: Facilitators and Barriers of Active Participation of caregivers of Children with Cerebral Palsy in their Rehabilitation: An Exploratory Study

Background : Cerebral Palsy (CP) is a group of permanent disorders of movement and posture, attributed to non-progressive disturbance that occurred in the developing fetal or infant brain. The condition results in long term disability in carrying out activities of daily living (ADL). Thus, it most times required active participation of the caregivers of the children affected in their rehabilitation. Objective: The aim of the study was to explore the facilitators and barriers of active participation of caregivers in the rehabilitation of these children. Materials and Methods: The study design used was qualitative indepth interview. The participants consisted of caregivers of children with CP attending Hasiya Bayero Paediatric Specialists Hospital, Kano. The caregivers were sampled and interviewed by one of the researchers until theoretical saturation was attained. A note taker wrote down and recorded responses of the participants using a tape recorder. The data generated from the interview was then transcribed, coded and analyzed using matrix analysis using constant comparative analysis. Results: Forty caregivers with mean age, 27.17±4.46 years participated in the study. The results of the study showed that, the factors that facilitate active participation of caregivers of children with CP in the rehabilitation of their children are improvement in the child’s condition, family support, improvement in the conditions of other children with CP, encouragement from the therapist managing the child, empathy, and cooperation of the child during home programs. The barriers are number of children the caregiver has, caregiver’s occupation and financial resources. Conclusion: Therapists need to help reinforce these facilitators, and devise strategies to help caregivers overcome barriers during rehabilitation of children with CP. For example, since lack of finance is one of the barriers to the caregivers’ active participation in the rehabilitation of their children, there should be a policy on CP rehabilitation that will make rehabilitation services accessible to all children with CP. Similarly, since family support is a facilitator,

sharing caregiving rehabilitation tasks among member of the family could help facilitate caregiver activation participation in the rehabilitation of their children with CP.

Background
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)(2)(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 4 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).

Design
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. Indepth interview was chosen because it provides rigorous and deep responses of participants. Rigour in qualitative research assures quality (17).

Participants
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. Participants were included if they served as caregivers to a child with CP for at least one year.
For the sample size, there are no hard and fast rules for sample size estimation in 5 qualitative research as this type of study approach maintains some degrees of openness (18). Consequently, the number of participants available was used until theoretical saturation was attained. Theoretical saturation is a situation in which new interviews no longer produce new information or insights (19)(20). 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. Two independent colleagues who are familiar with qualitative research methodology reviewed the interview guide and offered suggestions before it was finally produced.
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. Participants were interviewed individually at different times to ensure that their responses were not influenced by the views other participants. In addition, participants were asked only relevant and same questions to ensure coherence in their responses. According to Tracy, the aforementioned procedures help to achieve quality assurance in qualitative research (17).

Data analysis
The study participants were interviewed face-to-face by the interviewer (AA) who has a 6 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 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 (21)(22). 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.

Results
The duration of the interview sessions was meant to last for between 30 to 45 minutes. 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.
"As I have told you earlier her mother has died since when she was

Theme 3: Lack of Financial Resources
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.

Theme 1: Improvement in the Child's Condition
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. "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.

Theme 2: Family Support
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

Theme 6: Co-operation of the Child during the Home Program
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.

Discussion
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 the caregiver has, 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. Therefore, it is important for the therapists to recognize these barriers and facilitators in order to help caregivers to participate actively in the rehabilitation of their children. This is especially that CP is a long term condition which requires care 24/7.
Consequently, the caregivers are considered as those who can help extend the care for their children by actively participating in their rehabilitation (23). Fortunately, caregivers of children with CP recognize how important physiotherapy is at improving motor and psychosocial functions of their children, and as such they are always willing to carry out the tasks the therapists recommended for their children at home (24). In addition, when caregivers participated in the rehabilitation of their children, motor function improved better compared to institution based rehabilitation (25). However, barriers such as number of children the caregiver has, financial constraint and caregiver's occupation may affect their zeal or willingness to actively participate in the rehabilitation of their children.
Although from the results of this study, the number of children a caregiver has can serve as a barrier to their participation in the rehabilitation of their children, a previous quantitative survey had a contrary result. According to Olagunju and colleagues, there was no significant association between number of siblings and compliance with home programs provided by a caregiver to a child with CP (26). One of the probable reasons for the difference in the findings of the two studies could be because of the different methodologies used in the studies. A qualitative approach which was used in the present study has the advantage of getting subtle and nuance insights on a particular phenomenon which cannot be detected by a quantitative study, a methodology used by the latter study (27). Secondly, the validity of the questionnaire used in the latter study is sketchy as only poorly explained content and face validation were mentioned. Therefore, it is possible that the questionnaire did not measure what it was purported to measure.
This is more so that other studies reported that number of children a caregiver of a child with CP has can cause so much burden on the caregiver and result in family adjustment (24, 28).
Since number of children can add more strain and stress to a caregiver, it is therefore important 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 for many years. However, if the children are older and they can help in the caregiving, this may be a blessing. In the present study, help or support from the family is a facilitator, and it was previously reported to be a primary source of support for caregivers and that it helps reduce caregiver stress (29,30).
Therefore, therapists 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. According to Chiluba and Moyo, caregivers of children with CP expressed the need for someone to stand in for them sometimes (28).
For lack of financial resources, it was reported previously that, low income is associated with increased caregiver burden (31)(32). Additionally, caregivers of children with CP have reported that one of the barriers to accessing care for their children is lack of financial resources (28). However, CP is a long term condition, and it requires care in the long term 13 that may cost huge financial resources. Consequently, cost of care can add more strain to the caregivers and constrain their ability to afford services for their children (33)(34). This is more difficult in places like Nigeria where people make out of pocket payments for health services. Similarly, in other low resource settings such as in Zambia, families pay healthcare services bills for their children which are most times difficult to afford (28,33).Therefore, governments need to make health services very accessible 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 developed countries such as the United Kingdom, health care services are largely free (35); and in 2005, out of pocket payment accounted for only 11.9% of total expenditure (36). Thus, it is pertinent for low resource settings such as Nigeria to critically analyze their healthcare delivery and come up with a system that will be accessible to all and sundry irrespective of their socioeconomic status.
Another barrier is caregiver's occupation which can limit the time the caregivers can devote in rehabilitation of their children. Although, there is assistive technology such as Switching that can help decrease caregivers' effort, energy expenditure and burden (24, 37); 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 (32). 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. Similarly, 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 14 the rehabilitation of their children with CP. The reasons for this could be because mothers or caregivers of children with CP value and recognize the benefits of Physiotherapy, and they believe that, it is important that the therapy continues (24,28). This appreciation is especially as regards to improvement in functional status. Secondly, the family or the caregivers are empowered following CP rehabilitation (38). However, at the same time the caregivers feel that the care is sometimes not well coordinated and they do not receive the kind of encouragement they feel they need from the therapists (28). Therefore, therapists need to do more to invest in research and professional skills in order to improve the conditions of children with CP. In addition, there is a need for the therapists to incorporate techniques such as motivational interviewing to encourage caregivers to participate actively in the rehabilitation of their children. Motivational interviewing improves self-efficacy (39).
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 a child with CP has is associated with increased caregiver burden (29). 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 caregiver encouragement by the therapists. According to Cerebral Palsy Guide, empathy is greatly required in the process of care for a child with CP (40). In addition, encouragement from the therapist is also greatly required; but it may be lacking (28). Therefore, therapists need to find means of training the caregivers adequately on the care of their children and use of motivational interviewing to encourage them actively participate in the rehabilitation of their children. However, one of the limitations of this study is that, only participants who were attending Specialists Paediatrics Hospital were included in the study. As such, their views may differ from those attending Primary Healthcare Centers where the system is less advanced than the one in the former.

Conclusion
Caregiver participation in the rehabilitation of their children with CP is greatly required.
However, there are barriers or facilitators that can hinder or encourage their participation.
Therefore, therapists need to recognize these barriers and facilitators to help discourage or reinforce them. In addition, government needs to make healthcare services for children with CP accessible irrespective of the family's socioeconomic status.

Implication for Policy, Research and Practice
Since lack of finance is one of the barriers to the caregivers' active participation in the rehabilitation of their children, there should be a policy on CP rehabilitation that will make rehabilitation services accessible to all children with CP. In addition, since CP is a long

Declarations
Ethics approval and consent to participate The study was approved by 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.

Consent for publication
Study participants provided consent to publish the study Availability of data and materials The data and all materials for this study are available on written request to the corresponding author.
Competing interests