Feeling shocked.

Caregivers shared how they started to show concern when their child didn’t reach the developmental milestones at the expected age. At the time of the diagnosis, caregivers experienced shock, disbelief, and an overwhelming sense of grief and confusion. One participant said: “I was shocked when I first heard of my child’s condition (P-9)”. Another participant explained:

When she couldn’t sit and walk like her friends, I was concerned and took her to the hospital; they told me it was CP caused by complications during childbirth. Hearing this explanation, I was fainted because she was normal when she was born. (P-3)

Caregivers expressed feelings of unpreparedness and a lack of knowledge about the actions they could take immediately following the diagnosis. They experienced a sense of hopelessness regarding their child’s prognosis and contemplated abandonment as a potential escape; however, none of the participants ultimately considered institutionalizing their children with CP. For example, one mother said:

When doctors told me it was CP, I didn’t understand what it was. I thought the child was of no use, and my family suggested giving him up for adoption. I didn’t believe that he could improve. I was concerned about where to leave or what to do with him. (P-2)

Feeling regret.

As caregivers navigated the challenging journey of supporting a child with CP, they often found themselves grappling with deep feelings of regret about the opportunities that slipped away and the dreams that were left unfulfilled. They reflected on the moments that could have been, contemplating how different their lives might have been had their child been born healthy or, perhaps, if they had passed away shortly after birth: “Sometimes, I wish she had passed away at birth; then, I wouldn’t have suffered this much.” (P-5). These thoughts weighed heavily on their hearts, intertwining with their daily experiences and shaping their perceptions of what could have been a more straightforward, hopeful life. One caregiver described:

I wanted to go to and work in an Arab country and return. If my child were healthy, I would have left him with my family and gone there. The reason I am living in poverty now is because of my child’s disability. (P-2)

Other participants said: “I had a different goal in the past and abandoned it, now living low where I am from; I can’t escape it. How would you escape?” (P-4). Caregivers also described feeling trapped and wishing they could turn back the clock. One mother indicated:

People around me used to wonder where I would end up, with positive expectations. However, I now find myself feeling stuck in this situation. I prayed to God, asking Him to change the course of time for me. (P-7)

Worrying about the child’s future.

This sub-theme reflects the emotional burden of caregivers regarding the future of their child with special needs. Caregivers were concerned about how they would carry and lift when the child grows, how to manage menstruation for females, and when they could no longer care. For example, one mother explained her worries as follows:

I am deeply concerned about her future. If she is not cured, it won’t be easy. Since she is female, she will experience menstruation after the age of 14, and I am worried about how I am going to manage that. Additionally, I am concerned about how I will carry her as she grows. I ask myself: Will my child be in this situation forever? What will I do? How can I manage her needs? These are my concerns about the future. Right now, she is young, and caregiving is not as challenging as I expect it will be in the future. The future will be much more challenging and overwhelming compared to the present. (P-3)

Another caregiver described her concerns about her daughter becoming an adult and how she wishes to live as long as her daughter to be able to take care of herself:

What if I die in the middle of this? Who will take care of her? Who will make sure she has food and water? No one will care for her like a mother does. I pray for our death to come the same day. In addition, she is 16 years old and going through puberty. I feel uncomfortable when I go out and leave her alone because I’m worried about the possibility of her being assaulted by local gangs. (P-6)

Still, other mothers talked about many other uncertainties related to independence of their children. For example, one mother said:

I’m worried about his future. Will he be able to speak? Will he be able to walk? Will he use his hands? What’s causing his difficulty with swallowing? What’s obstructing his esophagus? All these uncertainties are weighing heavily on my mind. (P-2)

Providing practical daily assistance.

This sub-theme describes the essential practical assistance that family caregivers provide to their children with CP in their daily lives. It outlines various tasks that caregivers undertake, such as preparing meals, feeding, assisting with personal hygiene (toileting, bathing, dressing), engaging in play, carrying (transporting) the children, and managing their medications. Family caregivers reported how they were committed to attending frequent medical checks and physical therapy appointments by carrying their children with CP on their backs for long distances. Furthermore, the caregivers described feeding and dressing as challenging as the child couldn’t sit upright. One mother said:

I wake up in the early morning and prepare her breakfast. I wipe her face, toilet her, and feed her breakfast. After three or two hours, there’s another meal and her medicine. The challenge is that it takes her two hours to feed in the morning (…) At lunchtime, I give her another meal. I keep an eye on the time, making sure she doesn’t miss toileting. Often, she wets herself. So, I must change her clothes before someone else comes and sees her in that state (…) I go to the hospital or health center every week or two. She spends a lot of time at the hospital—three times a week, I take her carrying on my back. (…). It’s a struggle, but I am doing it. There’s no transportation, but I come from the outskirts of [city] three times a week carrying her on my back and walking. (P-13)

Another mother explained how the increased muscle tone of the child with CP made the daily caregiving difficult: “I bathe her frequently and feed her on my lap because she can’t sit upright. Dressing her is also challenging due to the stiffness in her legs.” (P-8)

“We mothers are their tongue”- Supporting child’s communication.

This sub-theme illustrates the role of family caregivers in facilitating communication for children with CP who struggled to express themselves by speech, emphasizing the caregivers’ essential role in ensuring the child is heard and understood. The phrase “We are their tongues” signifies how those caregivers spoke on behalf of their children, interpreting their needs, feelings, and desires by understanding children’s facial expressions, body movements or other cues. One mother described:

(…) because a child like this can’t speak, we moms are their tongue, or we are the one who understands what their needs are through their cues, my child never says a word when he is thirsty or hungry, he can’t say it, we mothers are the ones who can understand and express their need with much struggle. (P-7)

Participants described how they interpreted children’s communication signs, expressions, vocalizations and body movements. One mother noted:

If she is thirsty, she tried to say a word near water, and when she wanted something to eat, she protruded out her tongue; when she wanted to pee, she kept slipping from her buttock. She has her cue, and I understand her cues because I am her mom living with her all the time. (P-3)

Mothers also talked about their hopes and attempts to communicate despite lack of children’s ability to speak. One mother stated:

I raise my voice, like an echo from a tin can, trying to get her attention, and I call her loudly, saying, “Mom, love!” even if she doesn’t respond. I keep doing it because I believe that over time it will help her learn to pay attention and listen, even though speaking is hard for her. (P-13)

“I couldn’t make it work” - Balancing caregiving and life dynamics.

This subtheme describes the sacrifices caregivers make to manage the demands of caregiving alongside other life commitments such as marriage and work. It emphasizes how caregivers prioritize the comfort and well-being of their children over their own needs. For example, one mother captured the hard situation she faced as she needed to choose between her husband and her child. She said:

(…) I couldn’t manage both (marriage responsibility and caregiving). I thought it would be better to prioritize my child, so I divorced my husband. If I had a healthy child, I might have been able to balance everything. But for me, it isn’t easy to handle both. I couldn’t make it work. (P-1)

Another mother explained the time needed to care for her child and needed sacrifices:

When raising a child like this, you sacrifice much of yourself. You could get married, of course, but it might not work out. If I start a relationship, I won’t be able to give my child the time he needs. So, I want to waste my time and energy with my child. I’ve thought about it and decided to focus on my child and leave my life behind completely. (P-7)

Participants also explained how they needed to quit working to be able to care for their children. For example, one mother said:

I used to have a job, but because of him, I had to leave it. It was my business; I was a hairdresser and had a salon. Everything stopped. Those who used to work for me (crying….) have now reached a great place in these six years, while it’s been challenging for me. (P-1)

Transportation and environmental obstacles.

Caregivers expressed the challenges of accessing the only available daycare services due to the long distance from home to Gondar and difficulties with transportation. They desired more conveniently located daycare options. One of the mothers explained: “I cannot bring my child to daycare due to the distance I live from Gondar and the difficulty of getting transportation. I wish the daycare were closer so that I could use it” (P-13). In addition, caregivers who had access to a wheelchair preferred to carry their child on their back instead of using the wheelchair for transportation due to the geographically challenging terrain and road conditions that made wheelchair use impossible. One mother said: “Despite that I had a wheelchair provided by the CBR, I prefer to carry my 12-year-old daughter on my back because the road condition is downhill and not suitable for wheelchair use.” (P-12)

Social stigma.

This subtheme reflects the lack of understanding, and negative attitudes of the community members and the caregiver’s own family towards children with CP, and their caregivers. The participants shared that others had misconceptions about the cause of CP and understood it as a punishment from God or caused by a curse. Community members feared the potential negative consequences of being in contact with children and their belongings. Caregivers were insulted and blamed as they were made responsible for the child’s disability. One mother explained:

My own families keep asking why the child can’t walk. They say, “Is this a curse? Or what have you done for this to happen? ‘What have you done to God?” They think it’s something I brought up by myself, and they fear a generational curse. They don’t seem to have any understanding of what’s happening. (P-9)

Another mother shared how she was insulted by others: “People around me perceive that CP is caused due to a curse or punishment from God in response to my wrongdoing; they insult me like this, and it hurts me a lot.” (P-3). In addition, some participants indicated that they lost meaningful social interactions due to misconceptions and stigma. For example, one participant said: “My neighbours withdraw me from any social interaction due to my child’s disease condition; they no longer share anything with us, even fire, which is the minimum thing we used to share.” (P-6)

Impact on physical health.

Participants emphasized how caregiving was physically demanding over time due to the increased age and weight of the child, which created difficulty in lifting and carrying. They described the exhaustion, intense pain, numbness, and lack of sleep as the result of the demanding nature of caregiving. One mother said: “Lifting to transfer and carrying her on my back is challenging as her age and body weight increase. Now, I feel completely exhausted, and my back hurts so badly.” (P-10)

Another caregiver explained how she developed back pain due to taking care of her child:

I am taking care of her, but I’m struggling and feeling exhausted. It’s affecting my health, and most of the time, my back hurts. Given my age and physical condition, carrying her on my back from home to the hospital is overwhelming. I can’t sit comfortably or lie down on my side without feeling intense pain in my back. It feels like my spine is about to break (…). (P-13)

Caregivers also shared consequences of physical work to lift and carry their child over time, as they became older. One mother explained:

For the past three years, I’ve been holding him on my lap because nothing works to calm his cries. My left leg, in particular, no longer functions properly. I rely on a taxi for transportation and struggle with walking downstairs. My hands have become numb from holding him for so long. At night, he has difficulty falling asleep. I hold him on my lap and try to comfort him, but he often stays awake until 2:00 a.m., and I can’t sleep until he does. (P-4)

Another caregiver said: “Wherever I go, I used to carry her on my back up to her 14 years old, but now I can’t manage to carry her; my body is exhausted.” (P-6)

Impact on mental health.

This sub-theme highlights the mental health challenges faced by caregivers of children with CP. Caregivers described experiencing feelings of anger, frustration, anxiety, forgetfulness, and difficulty concentrating, which stemmed from the physical and emotional demands of their role. They also continuously worried about their child’s future. Witnessing their child’s struggles firsthand, coupled with societal misconceptions and stigma surrounding disabilities, added to the mental health strain experienced by caregivers. For example, one mother talked about her life as ‘chaotic’ and her effort to seek solitude, while she also needed to care for other children:

(…) caregiving for my son significantly impacted my mental health. I haven’t had any rest, and it’s taking a toll on me. I’ve been experiencing forgetfulness lately, and my life feels chaotic and unstable. I seek solitude, often shutting myself in at home to find peace. However, my other kids’ constant noise and interruptions make maintaining the silence I need difficult. (P-7)

Other caregivers indicated feeling angry and overwhelmed. One participant explained:

(…) I feel angry about why this is happening to me. Lately, I’ve started forgetting where I put things and losing track of my thoughts. This happens because I’m overwhelmed by the physical demands of caregiving and constantly worrying about what will happen to her tomorrow. (P-13)

Seeing the pain that the child experiences daily and the stigma surrounding the disability have affected the caregiver’s mental health, as captured by this mother:

Even though this disability affects the child, it has a significant impact on the mental health of me. This is because, first, I experience my child’s pain every day, and second, the community’s misconceptions and insults about disability also cause mental suffering. Some people even believe that CP is a result of the parent’s sins, and hearing this can be devastating and cause immense mental anguish. (P-5)

Social Isolation.

Caregiving impacted the ability of family caregivers to engage in social activities. Some caregivers uncovered that they lacked assistance with childcare, making it challenging to participate equally in social life with their peers. Others shared that they spent considerable time caring for their children with CP, which led to feelings of isolation, even from close family members. Concerns regarding their child’s safety, including medication management and personal care, further limited their attendance at social gatherings. Even those with some support for childcare often struggled with a lack of trust in others to provide the same level of care and attention, resulting in a disconnection from social activities.

Participants described losing contact with their peers. One mother explained:

I can’t connect with anyone because it takes time to do these things. It’s hard to take my son to social activities. I can’t leave him at home as no one else cares for him (…). I don’t have any social relations. So, I can’t participate in anything, and I can’t be equal with my peers. (P-1)

Caregivers described how bringing their child to social events made them worry about humiliation, so they stopped attending such events. One mother said: “Participating in social life is challenging for me, and I live in isolation, even from my family. I spend most of my time caring for her. If I take her with me, I worry about facing stigma” (P-6). As participants emphasized their social isolation, they also identified a lack of adequate social support as a source of their isolation:

I am unable to take her to social events such as funerals, weddings, or visits to the sick. I have no one to leave her with, and I worry about potential hazards, such as exposure to electricity or hot water. This leaves me isolated from social life. If I go somewhere, who will give her medication on time? Who will feed her with the same care I do? I wouldn’t have any peace of mind if I left her alone. I wouldn’t trust anyone else to handle her toileting and personal hygiene. As a result, I remain disconnected from social life. (P-13)

Personal growth and resilience.

Despite the negative impact of caregiving on health and social life, family caregivers also discovered numerous positive effects of caring for a child with CP. Caregiving opened the door to enhancing social interaction skills, exploring new career opportunities, and experiencing significant growth in maturity and a sense of purpose through the evolving role and relationship with the child. Caregiving has also provided chances to establish meaningful social connections, deepened their faith in God, and helped develop a resilience mindset for future life challenges. One caregiver explained:

Previously, I struggled with interacting with people and didn’t know how to handle social situations. However, due to my child and thanks to the training support I received from CBR, I am much better at this. I can now engage with others more effectively and feel more comfortable in social interactions. I also got a job opportunity at CBR. (P-3)

Participants also mentioned how caregiving has helped them build social connections and access valuable emotional support, which has brought them happiness and gratitude. One mother said:

Due to my child, I know a lot of people. I sell fruits on the street, and people often come by to buy from me, not just for the fruit but to support and encourage me. While the money helps, what matters most is the emotional support I receive. It makes me feel happy and grateful. (P-5)

Some caregivers also mentioned how they matured after having a child with CP. One mother said: “After I gave birth to her, she changed my life and made me a mature person” (P-9). Participants expressed that the presence of their child has profoundly shaped their life and identity. One mother said: “I thank God because, without my child coming into my life, I would not know what I would be like” (P-1). In addition, caregivers emphasized that taking the child to different spiritual and religious places questing for healing helped them to strengthen their faith. One mother explained:” I didn’t know God before, but because of my child, I’ve had the opportunity to visit various spiritual and religious places that have strengthened my faith. I am very grateful and happy for this experience.” (P-3).

Caregivers explained how they learned valuable lessons from their continued challenges, which have strengthened their ability to be prepared for future adversities and fostered resilience. One mother said:

Even if I don’t foresee greater difficulties beyond what I’ve already faced, I have been taught that it’s possible to encounter more hardship. I understand that more challenges might come, and I am prepared to face them with the lesson I got from this experience. (P-4)

One caregiver used an Ethiopian proverb, “Horns are not heavy for a cow,” (P-2), which indicated that certain burdens or responsibilities may feel natural or manageable for those who bear them, just like a cow carrying its horns. In the context of caregiving for a child, it reflected her determination and love as a parent, indicating that while carrying her daughter may be physically demanding, it’s a part of her life that she embraces without complaint.

Natural support.

Caregivers received physical, informational, and emotional support from their natural support systems, such as family, friends, and neighbours. However, the same support sources were reported as a source of distress in the earlier findings. Spirituality and religion played a crucial role in the lives of family caregivers, with all caregivers emphasizing that their faith in God helped them find the strength and support needed to persevere. Engaging in spiritual practices, such as attending church and praying, served as vital coping strategies during difficult times, alleviating worries and enhancing their overall well-being.

Caregivers highlighted how siblings, friends, and neighbours were essential sources of support through their caregiving journeys; however, these circles were reported as a source of distress in the earlier findings. One mother said: “Her older sister helps me a lot, especially when her period is coming; she prepares and changes her underwear and pad when needed.” (P-6). However, the involvement of siblings in caregiving negatively impacted their school attendance and educational achievement. For instance, one caregiver noted, “Whenever I want to go somewhere, my daughter has to miss school to care for her sibling with CP. As a result, her academic performance is very low.”(P-8).

Another mother indicated how friends were supportive emotionally and led to a formal support service: “My friends are on my side all the time by giving advice and reassurance comfort, and telling me where to go to get services, and they are the ones who told me about CBR and pushed me to enroll.” (P-2). Similarly, one mother expressed the emotional support she got from her neighbours: “My neighbours, even though they didn’t help me with childcare, provided me encouragement and empathy and gave me hope by saying, ‘One day he is going to be fine. Be strong’.” (P-4).

All caregivers mentioned that religion and spirituality helped them cope with the stress of caregiving, and they attributed divine intervention as the source of their endurance and survival. One mother explained:

As an Orthodox Christian, I find peace through prayer, which brings me tranquility and helps me feel better. I prefer going to church when I am under significant stress, as it helps alleviate my worries. This practice has always been my way of coping with stress. (P-1)

Another mother expressed that no one was on her side except God who helped her to come this far:

Despite all the challenges, I thank God that I am still surviving. It is through God’s help that I have come this far. I now realize that my strength, power, and endurance all come from the child of the Virgin Mary. No one else has been with me by my side; only God stands and strengthens me. (P-7)

Spiritual fathers also provided emotional support for some caregivers by offering home visits, advice, and check-in calls, ensuring they did not miss weekly church masses. One mother said:

My spiritual father gave advice and reassured me that cerebral palsy is not a sign of divine anger. I faithfully attend mass every Sunday; if I miss a service, my spiritual father always checks in on me. He also makes sure my child receives holy water and Holy Communion. Their care and concern for both of us bring me great happiness. (P-3)

While caregivers initially experienced emotional pain and sorrow, they ultimately came to embrace their role with a deeper understanding and acceptance. Caregivers conveyed that their child was a gift from God. They explained how spirituality helped them to overcome the struggle and accept a new reality. One mother said:

Initially, I was overwhelmed. However, as time passed, I had to calm myself, accept the situation, and thank God. That’s all I could do... (crying) I realized there was no way out through struggle, so I chose to be grateful to God. I accepted it, and now I pray that He (God) doesn’t add more challenges (sobbing). That’s how I’ve managed to get through this, through prayer and trusting in God. (P-1)

Caregivers described how faith helped them to accept their child’s condition. One mother explained:

In our community, people point out and say these are mothers of children with disabilities. Now, it doesn’t resonate. Because I didn’t buy it from the market or choose it, God gave it to me. It would have resonated with me if it had been in the past, and I was crying a lot. (P-9)

Another caregiver indicated: “There is nothing I can do because God gave him to me. After all, the Creator gave him to me” (P-12). Similarly, another mother said: “I am grateful; she is God’s gift. I will not go anywhere, no choice; I have accepted what God has given me.” (P-5). Caregivers reported being overwhelmed by the caregiving and turned to God to seek a cure for their child and to get relief from the caregiving burden. One mother explained: “What can I do when God has given me this burden? I wish He grant her the cure.” (P-13).

“I used to believe this was only happening to me” - CBR support.

CBR was the only source of formal support for caregivers, and it offered various forms of assistance, including education, small financial loans for some caregivers, physiotherapy, wheelchairs, and daycare services for their children. CBR also facilitated the formation of support groups and regular meetings, fostering a sense of community that alleviated feelings of isolation, and promoted emotional adjustment through shared experiences. Furthermore, those who accessed the daycare reported experiencing mental relief, and their children showed positive progress. One mother said:

“I have never gotten support from the government or any other organization except CBR. CBR supported me a wheelchair for my child and a small loan to start a business, but this doesn’t match with my needs.” (P-1).

Caregivers who had been attending “Holy Water” for a long time were now thankful for their child’s progress following physical therapy given by CBR field workers. One mother indicated:

I believed holy water would heal her, and I tried holy water in different places for an extended period. Then, lately, I took her to the hospital, where I heard about the physical therapy offered by CBR. Even though she couldn’t speak so far, I am grateful to see some progress, such as holding a bottle and feeding herself. I am genuinely thankful. (P-13)

The participants highlighted how CBR organized caregivers into support groups and delivered training regularly. Caregivers were able to accept their child and got relief after meeting other caregivers with the same condition at CBR. One mother explained:

Before I met other caregivers like me, I used to believe this was only happening to me. But now, after seeing children with even more severe disabilities here in CBR, I’ve come to accept her with gratitude to God. I am thankful for her, and I embrace her as a blessing. (P-8)

Another caregiver explained how CBR provided training, which improved her mental well-being, however, she could not get financial support, which was her priority. This mother said:

I used to feel deeply distressed when I saw her typically developing peers. Over time, the training and education have helped me feel more at ease and improved my mental well-being. However, beyond that, CBR has not offered any financial support, which I need most. (P-3)

The daycare in CBR helped caregivers to get relief from the caregiving burden and children also benefited, for example, they started gaining weight after joining the daycare. One mother noted:

I used to cry when I saw my son’s age equals going to school, but now I got mental relief since my child has joined this daycare; he is also gaining weight because they feed him. I am so grateful for those who made this happen. (P-2)

Support needs.

All caregivers underscored the importance of caregiver-focused support to ensure the well-being of their children with CP. One mother said:

Although the impairment affects the children, it is the parents who suffer the most and are deeply impacted. Primarily, I believe it is essential to focus on supporting the parents rather than the children. So, the main focus should be on supporting parents. If parents are supported, they can provide better care and protection for their children. When parents are healthy and have a good mental health, they can better care for and love their children. (P-1)

Caregivers reported various support needs, including financial support, psychological counseling, healthcare services, access to assistive devices, and access to child education. The financial challenges faced by caregivers affected their ability to meet the essential daily needs of their children, particularly for items such as milk, diapers, and food, as captured by one caregiver who said: “For my child, all the basic things are needed because I am financially unable to fulfill them by myself.” (P-1). Another mother stated: “I couldn’t afford to pay rent. I need housing support. If I do not pay rent, then I can sleep with peace of mind.” (P-2). Consequently, the main support need identified by caregivers was financial support to foster economic independence and self-sufficiency. One participant explained:

Even though I’m struggling financially a lot, I’m not asking for money from people as an option. I don’t want to beg people. I want to work and improve my life while caring for my child, but I lack the financial resources to start a small business. I applied for a government loan, which was denied because I don’t have property to use as collateral. Therefore, I am seeking financial support to help me get started. (P-3)

Caregivers couldn’t leave their children to work, but they wanted to run a small business from home while caring for their kids. Financial issues were a big obstacle. One participant said: “I would be very happy if I could start working while caring for my child. I believe that working is the only way to solve my financial struggles. I have always thought of having a small kiosk. However, without a penny on my hand, it remains nothing more than a wish.” (P-1). Another participant added: “If I get financial support, I will create my own business at home.” (P-6). The ongoing conflict and instability in the region have exacerbated their economic challenges, along with the rising cost of living. One caregiver explained: “Due to the war, I lost my source of income. At times, we didn’t even have anything to eat. I started a small business on the street to meet some of my children’s needs, but as you can see, the situation [the inflation and instability] in the country has worsened. It’s hard to earn any income from that now.” (P-7).

In addition, the psychological counselling services were identified as essential in addressing caregivers’ mental health needs, thereby enhancing their capacity to provide optimal care for children. One mother explained:

Caregivers like me should get psychological counselling because our mental well-being is greatly affected. I need support for my mental health, and CBR should have professionals who can offer this crucial psychological support. I have not received any psychological support so far. (P-7)

The caregivers highlighted their unmet need to obtain adequate healthcare services. Key issues mentioned by the participants included a lack of comprehensive health information about CP, long waiting times, unprofessional attitudes from professionals, and an absence of essential treatments or therapies. Caregivers expressed their lack of knowledge about the cause of their child’s condition, treatment and its long-term implications due to unclear and inadequate information from healthcare professionals. One mother explained:

I don’t even understand the illness’s nature and cause. Whenever I ask the doctors about his condition, they keep telling me it is related to birth, that is it. I am not educated to navigate about the disease. I want to know if it is a problem related to the brain and how it can be resolved. These were my concerns, but what should I do if the doctors couldn’t clarify? How can I know by myself? I couldn’t. (P-4)

Due to a lack of knowledge about CP, some caregivers blamed themselves, associating CP with wrongdoing and punishment from God. One mother said, “I questioned God why He gave me a child like this, wondering what sin I had committed” (P-8).

Long waiting times and a poor attitude from health professionals, led caregivers to stop follow-up appointments and place hope in divine intervention for their child’s condition. One mother described:

I have been bringing my child to the hospital for his follow-up appointments. Despite arriving early in the morning, I often wait the entire day, with no priority given to him. (…) One day, the doctor stopped me and asked why I was coming. She said, ‘He is no longer growing, so there’s no need to come anymore.’ After that, I stopped the follow-up. I began praying, ‘God, you are the one who can restore everything you’ve given me.’ I realized there was no point in continuing to go to the hospital, so I stopped the follow-up. (P-7)

In addition, caregivers reported that physical therapy was the only treatment provided for their children with CP in the hospital, which didn’t bring improvement in their children’s condition. As a result, they were obliged to seek alternative cure, such as holy water for healing. For example, one mother indicated:

I have taken her to the hospital three or four times, but it hasn’t helped because she received no treatment beyond physiotherapy. I will take her to the “holy water” if God grants her forgiveness; I have no other options (…). I remain hopeful that God will bring her healing. (P-11)

Caregivers identified a need for assistive devices such as wheelchairs for transportation and helping their child to sit and feed in an upright position. One mother explained:

My child needs a wheelchair. She wants to sit, but I don’t have a wheelchair, can’t afford to buy. I made a seat from a cardboard box and clothes, but she’s growing and [the seat] is no longer strong enough to hold her. If I could find a wheelchair, it would make a big difference and allow her to sit comfortably. (P-3)

Furthermore, caregivers emphasized the importance of education for their children. One mother said: “My child needs an education. I want her to go to school like her friends and learn and transform her life.” (P-10). Apart from the long-term benefit that education brings to the child’s future, caregivers believed that sending their child to school would provide some time for them to work and meet their child’s needs. One mother noted: “If my child can go to school, I will also be able to work and meet her needs.” (P-6).