Perceptions and Experiences of Caregivers of Children with Cerebral Palsy in a Sub Urban District of Ghana

doi:10.21203/rs.3.rs-65343/v1

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Perceptions and Experiences of Caregivers of Children with Cerebral Palsy in a Sub Urban District of Ghana

https://doi.org/10.21203/rs.3.rs-65343/v1

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Background: Research indicates that primary caregivers of children with disability encounter varying amounts of stress performing daily routines. Cerebral palsy is a lifelong functional disability common among children in developing countries. Nonetheless, there is very little literature about cerebral palsy in Ghana. The purpose of this study was to unearth the perceptions and experiences of cerebral palsy among caregivers of children with Cerebral Palsy in a low resource setting.

Method: Using a descriptive qualitative approach, 15 caregivers were purposively selected in the Accra Metropolis and interviewed face to face. Collaizi’s seven step method was used to perform content analysis and four themes emerged.

Results: Study findings revealed that caregivers had different perceptions regarding the causes of cerebral palsy with most of them linked to spiritual reasons. Caregivers faced physical, emotional, financial, marital and social challenges. The study also found that the external network available to the caregivers were mainly NGO’s with limited governmental support.

Conclusion: Caregivers face an arduous task which has implications for their physical and emotional wellbeing as well as their finances. Multiple stakeholder engagement and dialogue is vital to create interventions and policies that can educate, empower and support caregivers to execute their duties and improve outcomes for children with cerebral palsy.

Psychiatry

Perceptions

experiences

caregivers

children

cerebral palsy

Of recent, Cerebral Palsy (CP) has emerged as the most common physical disability in infancy (Arora, Aggarwal & Mittal, 2014), and a threat to the quality of life of children especially those in deprived parts of the world. Several studies report a worldwide prevalence of 4 per 1,000 live births (Manadal, 2017). This chronic motor disability has no cure and disturbs the functional abilities of the affected child (Lariviere-Bastien & Racine, 2011). Children with CP have a greater rate of mortality and experience many co morbid conditions as well (Strauss, 2010). In the literature, several causes are identified ranging from teratogenic exposure in pregnancy, traumatic birth injury resulting in severe asphyxia, premature delivery, and metabolic factors amongst other prenatal infections (Burton, 2015; Stavsky et al., 2017).

The care process of children with CP is stressful, difficult and usually, most caregivers are unprepared to take care of these children (Olawale, Deih & Yaadar, 2013). These challenges affect all dimensions of the caregiver’s life including physical health implications (Chiluba & Molo, 2017; Gallagher & Whiteley, 2012; Hubert, 2011; Singogo, Mweshi, & Rhoda, 2015). Poor cardiovascular health and musculoskeletal injuries are likewise mentioned (Yamaki, Hsieh & Heller, 2009). Numerous mental health issues have been implicated to disturb the mental health of caregivers and family members of children with CP (Olsson & Hwang, 2008; Gona et al, 2011; McNally et al, 2013). The authors added been exposed constantly to stressful daily routine of caring for children with CP can have adverse consequence for the caregiver’s mental health. Depression a type of mood disorder was identified as one of the mental health conditions that can arise as a result of caring for children with CP (Olawale, Deih & Yaadar, 2013). The mental health issues may be associated with problems such as marital breakdown, dysfunctional family relationships, and social isolation (Singogo, Mweshi & Rhoda, 2015).

Hamzat and Mordi (2007) noted that the care children with cerebral palsy receive revolves around a competent, skilled and confident caregiver. Caregivers are pivotal to the life of the child, and consequently provide the enduring, labor intensive care required by the child including sacrificing of their sleep (Hubert, 2011; Polack et al. 2018). Thus, it is very essential for caregivers of children with cerebral palsy to have good knowledge and pertinent skills. It has been documented that caring for a child with a long-term functional limitation is a daunting task that requires physical and mental fortitude (Dambi & Jelsma, 2014). All this is necessary for the caregiver to be able to deal with the numerous challenges faced during the provision of care. The major challenges faced in caring for children with cerebral palsy as reported by studies across the globe include anxiety, depression and stress (Davies & Honeyman, 2013; Edwardraj et. al, 2010; Gona et al, 2011; Gupta & Kaur, 2010). Caregivers, who are mainly mothers, go through long-term stress that affects them psychologically, socially and economically (Davies &Honeyman, 2013; Gupta & Kaur, 2010). Often the complexity of the disability makes acceptance of the child very difficult. Also, it is common to find a sense of denial, anger, shame, guilt and other negative emotions that linger and worsen due to social stigma and misconceptions (Nurullah, 2013).

Cerebral palsy is under researched on the African continent and there are no registries in many countries (Burton, 2015; Donald, Samia, Kakooza-Mwesige, Bearden, 2014). Meanwhile there is evidence to the fact that it is becoming a huge problem for the continent (Pretorius & Steadman, 2018). In a Ugandan study, there was a high prevalence of CP recorded (Kakooza-Mwesige, 2017). Unfortunately, due to prevailing cultural expectations and norms in most African countries, large knowledge gaps on the aetiology, rehabilitation and treatment still remain. Whilst some caregivers associate CP to medical causes, others are influenced by the society to perceive it in a negative light (Edwardraj et al, 2010). Aldersey (2012) reiterates that mothers, if ignorant about the condition may not seek other means on non-evidenced based treatment to the detriment of the child. Many cultures in this part of the world have negative beliefs about any kind of disability including CP. In Tanzania, the birth of a disabled child is perceived as a “bad omen” and wealthier families are accused of sacrificing their child’s intellectual capacity for riches (Aldersey, 2012). Also, in Kenya caregivers of children with CP were tagged negatively with bewitchment or punishment from God (Gona, Mungala-Odera & Hartly, 2011). These negative beliefs provide a bedrock for marginalization in communities. For fear of stigma, disabled children are kept away from the public eye. (Norizan & Shamsuddin, 2010). Thus, making registration of disabled children a difficult task.

A South African study revealed that most people attribute cerebral palsy to spiritual cause (Wegner & Rhoda, 2015). In some African cultures, there is an ideology that CP is linked to some sort of money ritual (Aldersey, 2012). The resulting misconceptions and negative attitudes towards caregivers and children with cerebral palsy poses a great risk to the human rights and survival of children with cerebral palsy as well as the caregivers (Olawale, Deih & Yaadar, 2013). In addition, it impedes treatment as people may not see the need to seek medical help and may interfere with treatment whereby the caregivers become non-compliant.

In Ghana, there are no existing statistics on children living with cerebral palsy neither is there any concrete policy for affected children. The Ghana Disability Bill passed over a decade ago does not specify issues affecting individuals with CP (Persons with Disability Act, 2006). Additionally, there appears to be very limited literature about the experiences of caregivers having children with CP. Existing researches have largely focused on classification of the disability, risk factors, training programs for care givers, quality of life issues and malnutrition (Adei- Atiemo, Rodrigues & Badoe, 2015; Polack et al., 2018). This study examines the perceptions and experiences of caregivers with CP children within a sub urban community of a developing country. The findings from this study will shed light on the challenges faced by caregivers in the daily care routine in a resource constrained environment and will provide the much needed information as no such study exists currently in the Ghanaian context. Stakeholders will be better placed in the provision of resources that can address unmet needs for caregivers and their children.

Design

The study employed a descriptive qualitative approach. According to Creswell (2009) a qualitative study is defined as an inquiry process of understanding a social or human problem based on building a complex, holistic, picture, formed with words, reporting detailed view of informants and conducted in a natural setting. The emphasis of this method lies in its ability to gather information that will facilitate understanding the human experience from the insider lens. This method depends largely on narratives from participants to explore problems. This method was chosen because it was the most suitable method for obtaining information on subjective experiences at a specific point in time.

Study Area and Population

The study was carried out in the Accra metropolis, one of the 26 districts in the Greater Accra region of Ghana with six sub metropolitan districts. The metropolis is highly cosmopolitan and ethnically diverse, fast developing in the heart of the capital. It is the most densely populated part of the region. At the 2010 census, there were 1,665,086 people residing in the district with a very youthful population.

Eligibility Criteria

The study included all caregivers of children who suffer from cerebral palsy within the Accra Metropolis. Caregivers were selected if they could speak English, Twi or Ga as these languages were spoken by the researchers. Caregivers were also selected if they have lived with their children for more than a year. Caregivers who did not meet the eligibility criteria and those who were not willing were not allowed to partake in the study.

Data Collection

Snowballing sampling was utilized to hand pick fifteen (15) caregivers of children who were diagnosed with cerebral palsy from health talk sessions organized for cerebral palsy parents, community, churches and homes within the metropolis. A couple with cerebral palsy was first identified during the talk within the metropolis who also introduced the researchers to other caregivers of children with cerebral palsy. The process continued until data saturation was reached. Participants were given detailed explanation of the aim of the study and each participants fully consented. Each care giver received a small monetary token of about $10. Participants were assigned alphabets (C) and digits in place of their names. Ethics approval was given by the Research and Innovation Center of Valley View University under exempted review. Detailed face-to-face interviews were conducted using a semi-structured interview guide. The interview guide was comprised of open-ended questions developed based on the objectives of the study, and literature review. The interview guide was comprised of two sections. The first section contained demographic information and the second section comprised of main questions and probes. The researchers were cautious in asking emotion laden questions. A counselor was engaged in case of any eventualities. Data was collected within one month at the respondents own interest. The interviews were conducted by the authors on weekdays through face-face interviews which was recorded with audio-tape. Each interview lasted for a duration of 45 − 1:30 minutes. Follow up interviews were held where necessary to clarify information given.

Data Analysis

This study was guided by the Colaizzi’s method of data analysis and the common themes of the perception and experience were identified using this approach. Data was analyzed simultaneously with data collection. The interviews were audio-taped, played back repeatedly and transcribed verbatim after each interview. Interviews that were conducted in local languages were transcribed by the researchers into English (if Twi or Ga). This was to avoid distortion of the data. Audiotapes were played back for amendment of the transcripts where necessary before analysis begun. Interruptions that were recorded during the interviews were integrated during the transcription. Transcripts were read several times by the team to identify codes. After transcription, content analysis was done. Similar codes were grouped together to develop themes which were agreed upon by all researchers. Later on these themes were also shown to participants for their approval. A separate file has been kept for each participant, in which the names of the caregivers are replaced with alphabets (C) and digits. NVivo (version: 10.0.641.0) was used to organize and manage data.

Rigour

Lincoln and Guba’s (1985) concepts of trustworthiness (credibility, transferability, dependability and confirmability) and suggested strategies were employed. The researchers engaged in extensive interview sessions with each participant and kept detailed field notes. Researcher perceptions and prejudice about disability were made open from the start and never influenced the research process. The researchers have kept a record of audiotapes, field notes, transcripts, interview questions, and consent forms and all other relevant information and documents regarding the study

The participants were fifteen (15) caregivers of children with cerebral palsy out of which 1 caregiver had twins with cerebral palsy. Only three participants were males whilst the other 13 were females. The average age of the caregivers was 46.6 ± 7.5 years with only one 60 year’s old. All participants were married as well as in monogamous marriages except two (2) who were divorced and single parents. Three of the participants were unemployed with 3 being traders whilst the rest were employed but complained they are having issues at work. The average family size of participants was five (5) with the largest family size being seven (7). The average years of living with the cerebral palsy child/children was 5. Based on the findings of the study three main themes were generated.

Table 4:1

THEMES AND SUBTHEMES
THEMES	SUBTHEMES
Perceptions about Cerebral Palsy causes	A. Brain damage and other health related risk B. Spiritual cause C. Midwife related causes D. Age Related disorder E. Premature or delayed labour
Experiences with care	F. Physical challenges G. Social withdrawal H. Emotional burden I. Strained marriages J. Deprived finances K. Time constraints
External resources for Support	L. Governmental support M. NGO support

Perceptions About Cerebral Palsy Causes

The caregivers in this study described their perceptions about cerebral palsy regarding what it is and what brings about cerebral palsy. Responses concerning cerebral palsy was centered on brain damage and other health-related reasons, spiritual causes, midwife related causes, age-related disorder and premature or delayed labour.

Brain damage and other health-related reasons.

Some caregivers believed cerebral palsy was as a result of an impairment in the brain function of the child. These responses were given by caregivers who have been sending their children to the hospital and those who have read about cerebral palsy. This can be seen from the extracts below:

“What I know is cerebral palsy is caused by damage to the child’s brain. My son had yellow eyes after birth and convulsed a few days later. The doctor explained that his brain was malfunctioning and that was the reason for the convulsion.” (CR1)

“I read about CP and found that it was a disorder affecting the brain of an individual causing the person to behave abnormally ….” (CR6)

Another caregiver who believed concoctions she took during pregnancy caused damaged to his child’s brain stated:

“I believe also, that my babies condition could be due to the concoctions I took when I was pregnant, that is why my baby have this condition and is behaving like that, but I believe he will be fine” (CR15)

Spiritual cause.

Spirituality is closely linked to the health of individuals, which could positively and negatively influence a person’s health. Most diseases are given a spiritual connotation and as such most people seek spiritual care for major illnesses that must receive immediate medical attention. Such spiritual beliefs about the cause of disability can hinder the management and treatment of a child.

Some caregivers indicated how they were made to accept their children’s fate as a spiritual one which prevented them from seeking medical care:

A friend of mine claims that CP is spiritual and also convinced me to visit a powerful pastor to pray for my baby to cast away the cursed. So I believed her till I tried severally and it was not working” (CR11)

My wife believes it has a spiritual cause, she believes is my family members that have caused the child’s condition since they were not in agreement of the marriage and She has also been starting unnecessary fights with me concerning that.” (CR9)

Due to the belief that CP has spiritual etiology, caregivers were forced to seek spiritual help:

“My in-laws made me leave her at a shrine once, since they taught is the fetish priest that can solve the spiritual issues. I have sent her to countless shrines and churches, it’s just not working” (CR4)

However, most caregivers strongly believed that God could intervene regardless of the child’s disability and this gave them comfort.

“I believe that Only God can heal my child. No one else can. I am waiting on God for a miracle” (CR3)

Midwife practices related causes

Most pregnant women who deliver in Ghanaian hospitals bemoan lack of respectful maternity care. This was clearly echoed by some caregivers who mentioned that they blamed he midwife who delivered them for their predicament. Some caregivers narrated how their children were maltreated and allegedly left unattended to by the midwife on duty. According to them, this mismanagement resulted to the complications.

“I think my child’s condition is labor related. I was in labour for 14 hours and I was neglected even though I complained of unbearable pain. The midwife was very unpleasant especially during the second stage when I couldn’t push. After two hours my baby boy was born and did not cry and later they said she has this condition” (CR6)

I think cerebral palsy can also be caused by injury to the baby during delivery. Some midwives are so careless that they will deliver your baby ‘any how” and this could lead to this abnormality in children. CR9

Age-related disorder.

Other participants narrated that CP is related to an advance in a woman’s age:

I believe it has an age related factor. This is because I was 50 when we had my child who had the condition. My wife was 41 years and was advised not to have children anymore but we could not control ourselves. “You know body no bi firewood” ….” (CR1)

Few participants in this study believe their age was what resulted to the child’s condition as reported below:

“I feel so guilty I gave birth to this child. All the children I delivered before age 35 are all normal except this one that I delivered at age 39 so I think it could have been my age. ” (CR13)

Premature or delayed labour.

Premature or delayed labour was among the believed causes or reasons that cause cerebral palsy. Minority of the mothers who delivered prematurely were of the believe that their children’s condition was as a result of that. Participants as seen below expressed this:

I think that the condition is labor related…..that is premature birth, ………. This is because my baby who was delivered at 8 months of pregnancy so she was put in a machine and later diagnosed of cerebral palsy. (CR7)

One caregiver stated how she experienced prolonged labour and noticed much later that her child was not behaving normally.

“I cannot tell what caused the disease, but I believe that giving birth at home and having a delayed labor might be a factor. I have had two other children and their labors were completely different from this one. ” (CR2)

Experience With Care

The caregivers had varied experiences whilst caring for children with cerebral palsy. The caregivers described their experiences as follows; physical, social, emotional, marital and financial experiences as well as time involved in care.

Physical Challenges

The major challenge faced by caregivers were physical in nature and this is due to the total dependence of the child on their caregiver. In the Ghanaian context, a parent with a child who has a disability is often neglected by others and thus must provide care for the child alone. Due to their inability to do most basic activities such as feeding and bathing, the caregiver has to take charge. Moreover, these activities require the use of physical strength due to the child’s immobility. The following quotes attests to that:

My most difficulty is feeding the child. He is unable to chew, so he is on only liquid diet, often it can take as long as 2hours to feed him. It takes a long time to bath him since he cannot sit or stand. We also have difficulty brushing his teeth; we struggle to get his mouth opened most of the time.” (CR14)

Another caregiver echoed the bodily pains she gets during the care process.

My whole body hurts. Performing daily activities is very difficult since they are two. The younger one’s legs become stiff sometimes which makes grooming difficult, moreover, I do not have wheelchairs or other things to help me move them around (CR3)

Social withdrawal

Some caregivers reported lack of social support from family, friends and neighbors. They reported that people either mocked the child claiming the child is either possessed or evil. In some instances, the child was labeled as a god or given an evil animal name. Caregivers therefore shun social gatherings and also deprive their children from any social interaction outside the home.

People in the neighborhood tell me that my child is an evil child, they call him names such as ‘bosom ba’ which means the son of a goddess and snake. Even at church, some members sit together after church service to gossip about me and my child and so I have stopped going to church and other gatherings” (CR10)

“People see my child as an evil child; they refer to her as ‘nsuo ba’- child of a river goddess. So why would I take him out for them to continue mocking me? I prefer being indoors rather” (CR8)

Lack of support from the family and community further compounded this problem.

“Because of her, I am not able to attend social functions as I would have to take her along; to avoid negative public reaction, I do not. People in the neighborhood often drive her away when she gets close to them. Sometimes people refuse to buy from me when they see the child beside me.” (CR7)

On the other hand, strong family cohesion and community support reduced discriminatory treatment of the child and made the caregivers more confident and stable.

Though it is challenging caring for them, I do not face much challenge in her care since my other children and family always support me in her care (CR5)

Emotional burden

Some mothers described that the extent of functional limitations the child has makes care difficult and added that this was emotionally draining and stressful. This is seen below:

I experience emotional stress most of the time since I’m the only one caring for the child and her siblings, and my husband refuses to help. (CR2)

It’s too emotional to bear. Most days are terrible and I don’t even know how I get through it looking at my own biological child going through all these. I am always down emotionally. (CR6)

Some relied on their religious beliefs as a source of emotional strength and gave them hope.

Casting all our troubles on God has been our source of hope and emotional strength. I believe in miracles. (CR1)

Strained Marriages

Some caregivers expressed that, since they gave birth to their child, their relationship with their partners became strained due to partner blame. This could be deciphered in the following quotes:

Caring for the child has also affected my marital relationship, in that we do not relate as well as we did before the child’s condition began, as my wife believes I am the cause. We are always having issues and fighting (CR 13)

I do not remember the last time we were intimate. My child’s condition has caused separation between my husband and I. We have not officially divorced but I have not seen him for 7 months now” (CR 7)

In some instances, some mothers felt that caring for their child could also affect future relationships

When I re-married, the man maltreated my child, due to this reason; I divorced him and did not marry again. I will not put my child through this anymore (CR6)

Deprived Finances

Participants in this study expressed how their children’s condition is causing them to have financial crises. The expense involved in procuring medication and other cost of care stretches the family’s limited resources. This is evident from the following extracts:

The cost is too much for an average Ghanaian. Averagely, we spend about $5 in daily care expenses particularly diapers and feeding, averagely $35 a week. (CR9)

Few who do not have any external financial supported expressed how they were burdened financially

I do not receive funds from family, friends and organizations. I sorely bare every cost in caring for my child and this has not been easy for me. I sometimes sleep on an empty stomach as the little I get goes to the child (CR11)

I spend almost $10 on each of them every day and this does not include physiotherapy and other expenses. I finance everything from the little salary I get. This is very costly for me (CR8)

Time constraints.

The caregiver recounted how they have to make extra time to cater for the needs of the child mainly because the child is totally dependent. The caregivers described their time constraint challenge as follows:

Caring for him is time consuming and as such, I am always late for work and sometimes cannot go to work (CR15)

Hmmm it is really time wasting. Sometimes, I spend as long as 3 hours feeding them and about 2 hours bathing and grooming them. The child sometimes gets recurrent seizures and feeding her is more difficult” (CR 9)

I am unemployed because of this child, there is no time to work and earn money (CR 1)

External Resources For Support

One clear finding discovered by majority of the participants in this study is the inadequacy of governmental support. This makes it difficult for children to have access to medical treatment like physiotherapy and others which is very expensive and is not covered by the National Health Insurance Scheme in Ghana. Even though participants were not aware of any governmental support in Ghana for children with CP, recently, the government of Ghana launched the Livelihood Empowerment Against Poverty (LEAP) programme, a social program for the poor and vulnerable in society which include families with cerebral palsy children. However, the amount is woefully inadequate considering the huge expense borne by caregivers. Currently, beneficiaries of the programme receive cash amounts ranging from GHS 64 to GHS 106 (11.07USD-18.34USD) (Government of Ghana, 2019; Sackey, & Remoaldo, 2019). However, both non-governmental organizations as well as government policy and implementation was found to be pertinent in the care of children with disabilities including children with cerebral palsy in other parts of the world (Muderedzi, Eide, Braathen, Icon & Babill, Stray-Pedersen, 2017).

A few Non-Governmental agencies are championing the cause of people with disability particularly children and this move is still taking baby strides amidst other prevailing health conditions. Economic empowerment initiatives will ensure that caregivers receive the necessary information and financial support to be self-sustaining whilst having the ability to help children with cerebral palsy reach their full potential. Also other interventions such as ongoing support, community engagement and education, inclusive education for children with cerebral palsy will allow caregivers to have a more fluid lifestyle where they feel loved and supported. The finding that cerebral palsy families receive support from NGOs was consistent with other studies (Nuri, Ghahari,Heather, Aldersey, & Huque, 2020).

Perceptions about Cerebral Palsy causes

Overall, commonly cited beliefs of what causes cerebral palsy by participants in this study included brain damage, effects of some medications administered during pregnancy, increasing maternal age, unsupervised home delivery, premature and difficult labour and midwife practices. The finding that cerebral palsy was linked to brain dysfunctions was in agreement with several other studies (Lariviere-Bastien & Racine, 2011; Jan, 2006). The results of the current study that cerebral palsy was linked to preterm labour and midwife practices was also linked to findings of other authors (MacLennan, Thompson, MBBS, Gecz, 2015).

Most of the participants in this current study opined that there was a spiritual bearing resulting in the condition. This finding is disturbing as it indicates little knowledge about CP and misconceptions associated with cerebral palsy. This finding was consistent with a study done in Kenya, which revealed that the society views cerebral palsy as retribution for evil deeds and also as a result of sorcery (Gona et al, 2011). Due to this belief, rituals are performed to get rid of the child. The finding that it is spiritual is also congruent with several studies from most African countries (Wegner & Rhoda, 2015; Gona, Mungala-Odera & Hartly, 2011; Braathen, Munthali, & Grut, 2015). And this accounted for stigma and discrimination experienced by care givers of children with cerebral palsy as established by some authors (Madi, Mandy, & Aranda, 2019; Norizan & Shamsuddin, 2010).

Experiences With Care

Considering the account of several caregivers, having and caring for a child with cerebral palsy has been described as stressful and challenging, especially for mothers. The study revealed that caregivers for cerebral palsy children included both mothers and fathers, nonetheless mothers often times tend to be the primary caregivers of children with cerebral palsy. It was ascertained in the current study that the burden of care is enormous and affects every aspect of the caregiver’s life including financial, emotional, social, physical and time constraints. This finding agrees with other studies which stated that the stress of caring for children with disability such as cerebral palsy affects all aspects of the caregiver’s life including, psychological, mental, physical, spiritual and economical (Grupta & Kaur, 2010; Hubert, 2011). Similarly, findings of other studies reported how caring for children with cerebral palsy resulted to increased stress (Nurullah, 2013). Moreover, this have overwhelming consequences on caregivers leading to decreased quality of life for both the child and the caregiver (Dambi, Jelsma & Mlambo, 2015).

The present study also ascertained that children with cerebral palsy and their caregivers were ridiculed to the extent of given them various names. Previous work has also established a similar pattern in some places where people view children with CP as a bad omen, punishment from God, or witchcraft (Aldersey, 2012; Gona et al, 2011) causing friends and other significant others to withdraw from them. This finding was congruent with a study by Bourke-Taylor, Howie, & Law, (2010) which illustrated that caregivers isolate themselves from others due to fear that they may bring along their disabled children who might create disgracing scenes. Nonetheless, a few families gladly support the mother and the child (Hill & Rose, 2009). The results of this study also established that most caregivers experienced challenges in meeting the basic needs of the child including feeding, clothing, and hospital charges due to financial challenges. This difficulty was specifically experienced by caregivers with low-income status. Some caregivers could not afford to meet basic financial requirements because they have had to quit their jobs to focus solely on childcare. This finding is consistent with report from a study by McNally et al. (2013) which stated that financial challenges among caregivers of children with cerebral palsy impeded meeting necessities like food, clothes, diapers and high hospital and transport fees. Finding was also congruent to the results of another study by Norizan and Shamsuddin (2010).

To conclude, caring for a child with cerebral palsy is a big task requiring mental fortitude and physical vitality as well as community involvement. In order to improve outcomes for children with CP and to maintain the health of caregivers, necessary support systems must be in place. Social welfare and other organizations should support mothers with cerebral palsy children to help lift the huge financial burden required for care of their children. Governments should also create an enabling and supportive environment through the establishment of rehabilitation centers and social protection policies for cerebral palsy children. A multi approach is needed to assist caregivers on all fronts to deal with day to day challenges.

Limitations

The study is limited in its generalizability because a particular setting was used and as such cannot be said to be the issue prevailing in other parts of Ghana. Qualitative studies are limited because few participants express their views. Therefore, the findings of the study cannot be generalized. Another important limitation of this study is the fact that cerebral palsy is one of such conditions people might not want to discuss. The researchers are aware that participants’ responses might have been limited. This therefore calls for more studies to unearth other issues that might not have been covered by this study.

Ethics approval and consent to participate

The Research and Innovation Center of Valley View University under exempted review gave ethics approval. Consent was sought from all parents before engaging hem in the study and they were given their free will to partake or opt-out from the study.

Consent for publication

Participants were given a consent form to sign before commencing the face-to-face interview guide

Availability of data and materials

The study data and materials are in the authors custody will be provided upon request

Conflicts of interest

The authors declare no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article

Authors Contribution

A.M: Conception of idea, Data collection and analysis, drafting of manuscript and final approval of the version to be submitted.

EOA: Conception of idea, Data collection, drafting of manuscript and final approval of the version to be submitted, corresponding author

I.G: Conception of idea, Data collection, drafting of manuscript and final approval of the version to be submitted.

S.A: Materials and methods, data analysis, drafting of manuscript and final approval of the version to be submitted.

D.F.A: Materials and methods, data analysis, drafting of manuscript and final approval of the version to be submitted.

J.K.A: Materials and methods, data analysis, drafting of manuscript and final approval of the version to be submitted.

C.A.A: Materials and methods, data analysis, drafting of manuscript and final approval of the version to be submitted.

D.A.K: Conception of idea, Materials and methods, drafting of manuscript and final approval of the version to be submitted.

G.A: Materials and methods, drafting of manuscript and final approval of the version to be submitted.

Acknowledgements

The author wants to appreciate all the women who willingly participated in the study, and the community leaders who allowed the authors entry into the community to collect the data

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Perceptions and Experiences of Caregivers of Children with Cerebral Palsy in a Sub Urban District of Ghana

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Abstract

Main Manuscript

Methods

Design

Study Area and Population

Eligibility Criteria

Data Collection

Data Analysis

Rigour

Results

Perceptions About Cerebral Palsy Causes

Experience With Care

Physical Challenges

Few who do not have any external financial supported expressed how they were burdened financially

External Resources For Support

Discussion

Perceptions about Cerebral Palsy causes

Experiences With Care

Conclusion

Declarations

References

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