Lived Experiences of Mothers Caring Children with Cerebral Palsy in Rwanda: A Phenomenological Study

Lived Experiences of Mothers Caring Children with Cerebral Palsy in Rwanda: A Phenomenological Study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Lived Experiences of Mothers Caring Children with Cerebral Palsy in Rwanda: A Phenomenological Study Jean Paul Niyigaba, Thiery Claudien Uhawenimana, Vedaste Bagweneza, and 3 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7206126/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 27 Jan, 2026 Read the published version in BMC Pediatrics → Version 1 posted 10 You are reading this latest preprint version Abstract Background Mothers of children with CP face increased responsibilities and challenges, exacerbated by traditional gender roles that assign most home duties to women. In patriarchal societies such as Rwanda, these gender norms can limit women's rights and reinforce unequal power dynamics. Despite the joy that children with disabilities may bring, caregiving imposes emotional, physical, and financial burdens, affecting caregivers' overall well-being and marital relationships. Research on cerebral palsy in Rwanda is limited, with existing studies suggesting that mothers face significant challenges. Objective This study explored the lived experiences of mothers of children with cerebral palsy and identified the specific difficulties they encounter. Methodology: This study used a phenomenological hermeneutic study design to explore the lived experiences of mothers as well as their challenges in caring for children with cerebral palsy. A purposive sample of ten mothers of children with cerebral palsy was recruited. The key informants’ interviews were conducted via an interview guide, and NVIVO was used to identify and label meaningful segments of data related to the research questions systematically. Codes that describe challenges faced by mothers and emotional experiences were created. Themes emerged as long as researchers were organizing and grouping related codes into broader themes. Results Mothers who are responsible for the care of their children with cerebral palsy encounter challenging and stressful circumstances, including marital difficulties, time-consuming care, financial burdens and social stigma. Additionally, they grapple with feelings of hopelessness regarding the future of their children and struggle to select appropriate food for their children. Conclusion The findings suggest that there is a need to support mothers of children with cerebral palsy to improve the quality of life of their children. Health facilities should help these mothers care for and treat their children. lived experiences caring and children with cerebral palsy Background Being a parent is usually a happy experience for the family; however, parents may face significant challenges while caring for a child with physical or mental problems( 1 ). There are many different juvenile developmental abnormalities, including cerebral palsy (CP), which is known to have a substantial physical effect on children's functional development( 1 ). Cerebral palsy (CP) refers to a collection of lifelong movements and posture disorders that limit activity and are thought to be the result of nonprogressive brain abnormalities that occur during fetal or infant brain development( 2 ). The incidence of cerebral palsy (CP) varies from 0.8 to 4.4 per 1000 live births( 3 ). Children with CP may also have complex limits in their ability to feed themselves, dress themselves, take care of themselves in the bathroom, and move around( 4 ). Owing to these restrictions, long-term care demands that are substantially above what children typically require as they grow may become necessary( 4 ). In addition to secondary musculoskeletal issues, these motor disorders associated with cerebral palsy are frequently accompanied by sensory, perceptual, cognitive, behavioral, and communication abnormalities caused by epilepsy( 2 ). A systematic review performed by Chauhan and Team in India in 2019, which aimed to determine the prevalence of cerebral palsy, revealed that there were 2.95 cases of cerebral palsy per 1000 children surveyed, and the analysis by classification into rural, urban and combined rural and urban areas revealed a prevalence of 1.83, 2.29, and 4.37, respectively ( 5 ). In the same year, a study performed in China that aimed to determine the prevalence of cerebral palsy and associated factors revealed that the prevalence of cerebral palsy was 2.37 out of 1000 live births( 6 ). These statistics highlight that CP remains a significant public health issue in both low- and middle-income countries (LMICs), particularly where access to maternal and child health services is uneven. These prevalence rates underscore a substantial burden on already stretched healthcare systems in LMICs; in regions with limited support infrastructure, the responsibility of care often falls on families, particularly mothers. This can lead to reduced income, increased caregiver stress, and long-term economic vulnerability, especially when children cannot access interventions that may improve function and independence further. These statistics suggest a substantial and ongoing need for early diagnosis, access to specialized medical and rehabilitative care, and long-term support systems tailored to the needs of children with CP. The expectation is that a typical child will develop into an independent adult who contributes to their own economy as well as that of the family and country ( 7 ). As a result, a young child develops into a well-known prosperous adult who contributes to society as a whole. In addition, parents hope for a physically fit, morally upright, intelligent, and visually appealing child to grow up ( 8 ). This is not always possible with a disabled child, and parents can expect to feel stressed out from raising their children without the hope that the child would grow up to be independent ( 7 ). The mother experiences a shock when she finds that her child has a disability such as CP, she starts to feel lonely and alone, and she might not know where to look for further resources, help or support( 9 ). A study conducted in Saudi Arabia in 2019, which aimed to explore the perceptions of mothers of children with CP, revealed that mothers experience stigma and discrimination within the community ( 10 ). Two qualitative studies conducted in Iran in 2019 by Mokhtari and in South Africa in 2023 by Manyuma reported that mothers of children with cerebral palsy felt self-isolated and socially excluded from their peers, were abandoned by their husband's family and others, lacked support from the child's father, and lacked financial and emotional support from the husband's family as a result of having children with cerebral palsy, which affected the quality of care for these children and ensured that they received healthcare services ( 1 , 12 ). The United States of America and Zimbabwean mothers who were providing care for a child or young adult with severe cerebral palsy described their experiences of handling an unexpected life, juggling caregiver obligations, playing advocacy roles, and confronting an uncertain future ( 13 , 14 ). Chinese mothers experienced total responsibility, feeling alone, being worn out from care, feeling like prisoners and worrying about the future ( 8 ). Indian mothers experience disrupted social relationships, health issues, financial difficulties, joyous moments, and concerns about the future of the child ( 15 ). Discrimination, isolation, lack of family and societal support, poor access to health information and formal education, and other factors, such as a lack of knowledge of the cause and course of cerebral palsy, caregivers' loss of jobs, increased healthcare costs and immediate physical care burdens, were identified as challenges faced by mothers of children with cerebral palsy in a study performed in Ghana ( 11 ). Mothers caring for children with cerebral palsy in rural areas of South Africa experienced financial hardships, health issues, mistreatment by community members and the accessibility of transportation for them and their children ( 16 ). This research highlights a knowledge gap in terms of the complex lived experiences of mothers who look after children with cerebral palsy (CP) and the effects on their own well-being. In addition, the lived experiences and challenges of mothers caring for children with cerebral palsy are not known in Rwanda, and little is known about cerebral palsy in Rwanda. This study explored the lived experiences of mothers of children with cerebral palsy in Rwanda. A child with cerebral palsy may require more emotional and physical energy to care for than a typical growing child does ( 11 ). Parents of children with CP and health problems seem to be under more stress than parents of children with Down syndrome because of their children's physical limitations, mothers who have a child with a disability such as CP must accept the diagnosis and change their expectations as well as how they provide care. Over time, there are particular demands and stressors that affect families of children with cerebral palsy ( 19 ). Stress can have a detrimental effect on a mother's quality of life since mothers of children with CP often do not adhere to a well-balanced daily schedule, which may have resulted in a less satisfying use of time ( 1 ). Owing to functional limitations, some children with CP require support with daily activities from others, necessitating long-term caregiving that is far more demanding than that required for children who are typically developing. Children with long-term functional disabilities may require high levels of care, which can be stressful and harmful to the caregiver's physical and mental health. Rather, raising a child with a disability affects both parents' roles, but their daily lives are typically more affected because they are frequently the child's primary caregivers ( 20 ). Mothers of children with cerebral palsy experience a journey full of love, resilience, and intense dedication. Along the way, they face challenges and moments of grace that shape not only their children's lives but also their own understanding of strength and kindness. The burden of cerebral palsy extends beyond the affected individuals to their families and communities, requiring significant resources for medical care, therapy, and supportive services. Mothers of children with CP face increased responsibilities and challenges, exacerbated by traditional gender roles that assign most home duties to women. In patriarchal societies such as Rwanda, these gender norms can limit women's rights and reinforce unequal power dynamics. Limited research exists on cerebral palsy in Rwanda, with existing studies suggesting that mothers face significant challenges. This study explored the lived experiences of Rwandan mothers of children with cerebral palsy and identified the specific difficulties they encounter. Methodology Design Researchers have employed a phenomenological design to explore the lived experiences of mothers of children with cerebral disease; this design focuses on how individuals actually live their lives. The study was carried out over a three-month timeframe from March 2024 to May 2024. We employed a three-step approach involving hermeneutic theory in a systematic way, ensuring that the research process was both rigorous and meaningful. Study population The participants in this study were mothers of children diagnosed with cerebral palsy. The study participants were limited to mothers because, according to researchers’ experiences, most of the time, at the time of health care seeking, they used to be accompanied by their mothers, as they are the primary caregivers of their children, and cultural norms in Rwanda prioritize women's involvement in care and home obligations. This selection ensures that the participants have direct and consistent caregiving experience. Excluding mothers of children with unrelated conditions or those who are not primary caregivers helps reduce variability and focuses the study on the specific experiences of mothers’ caregiving in CP. Study setting This study was conducted in two distinct settings in Rwanda: a rural catchment area served by Kirehe District Hospital and an urban center, HUMURA Day Center, located in Kigali-NDERA. These sites were purposively selected to ensure representation of both rural and urban contexts. Kirehe District Hospital serves a predominantly rural population and provides specialized care to children with disabilities, including those with cerebral palsy (CP). HUMURA Day Center is situated in an urban setting and is well known for its focus on providing comprehensive care and rehabilitation services to children with disabilities, particularly those with CP. Both settings were also selected on the basis of their accessibility to study participants. Ethical considerations The authors received ethical approval from the institutional review Board of the University of Rwanda College of Medicine and Health Science with reference number CMHS/IRB/067/2024, and the study settings granted permission to conduct this study. After approval was obtained, written informed consent was obtained from the mothers before participation. Confidentiality and anonymity were maintained, and participants’ rights were respected. Data were anonymized, audio-recorded and stored securely on a password-protected computer accessible only to researchers. Data collection process The data collectors explained the study to the mothers who fit the criteria, and the interviewing process and the study's specifics were provided after the introduction. To learn more about the study and determine if mothers would be interested in participating, researchers contacted individuals who had shown interest in participating, and an interview was conducted by two researchers with a background of nursing. Written documentation and verbal explanations of privacy policies were provided to the participants prior to the interviews. The participants signed consent forms, and permission for recording was obtained from the participants before the interviews began. Individual semi structured interviews were used to gather the data in March 2024. The interview guide contained two sections, one for demographic information and another consisting of twelve questions regarding mothers’ experiences in caring for their children. The interviews lasted between 20 and 40 minutes, and the study samples were determined on the basis of the principle of data saturation, where from seven to ten participants interviewed, there was no new information from the participants, and the data collectors stopped recruiting new participants. Analysis The interviews were audio-recorded and transcribed. After reading and rereading the transcripts, two male researchers performed thematic analysis, and by using NVIVO, a systematic identification and labelling of meaningful segments of data related to the research questions were performed. Codes that describe mothers’ experiences were also created. Themes emerged as long as researchers were organizing and grouping related codes into broader themes. These themes represent mothers’ reactions and shared experiences in caring for children with cerebral palsy. Results This section presents key findings of the study. Sample characteristics The majority of participants (4 out of 10) were between the ages of 36 and 40 years, while two were in the 46–50 years age range. In terms of education, most participants (6 out of 10) had attained primary-level education, with two having completed either secondary or university-level studies. With respect to marital status, four participants were married, three were single, and three were divorced. Occupationally, half of the participants (5 out of 10) were unemployed. The remaining participants included three cultivators, one midwife, and one student. Concerning their children’s health, five mothers reported suspecting problems immediately after birth. Four noted concerns between the ages of one and two months, whereas one child was diagnosed with cerebral palsy between five and six months of age. Notably, none of the participants reported that their children had attended special schools. Table 1 List of themes and subthemes Themes Subthemes Reactions of mothers after learning that their children have cerebral palsy Saddened Acceptance Experiences of mothers in caring children with cerebral palsy Difficult and Stressful life Time consuming and Expensive care Marital issues and Social Stigma Physical and Psychological health impacts Themes Two main themes were identified during thematic analysis: ( 1 ) reactions of mothers after learning that their children have cerebral palsy and ( 2 ) experiences of mothers in caring for children with cerebral palsy, as shown in Table 1 . Theme 1: Reactions of mothers after learning that their children have cerebral palsy The first theme indicates mothers’ reactions. Mothers who had children with cerebral palsy expressed different reactions after learning that their children were experiencing cerebral palsy and that feelings of sadness and acceptance were their reactions. Subtheme 1: Saddened The participants conveyed feelings of profound sadness upon discovering that their children had cerebral palsy: “Huum, I felt saddened, very saddened, when you give birth, you hope to have a healthy baby who will be able to walk; to study, it is so sad to see other children of the same age as yours going to school but yours cannot and stay at home lying in the bed and is not even able to wake up himself, I felt so sad, but as long as days go, I accepted the situation .” Participant 3. Subtheme 2: Acceptance Some mothers demonstrated acceptance of the child’s condition after learning that the child was experiencing cerebral palsy: “I perceived it well, nothing I could change, I took it as normal, I did not get surprised it is all about God wish” Participant 10. Theme 2: Mothers’ experiences in caring for children with cerebral palsy Theme 2 highlights the experiences of mothers in caring for their children with cerebral palsy. In terms of their experiences, four subthemes were identified: ( 1 ) difficult and stressful life, ( 2 ) expensive and time-consuming care, ( 3 ) marital issues and social stigma, and ( 4 ) physical and psychological health impacts. Subtheme 1: Difficult and stressful life The majority of the participants responded that by the time they learned that their children are having cerebral palsy, it was difficult in their lives because their children were not meeting their expectations to have normal children: “It was difficult, and it took me away, I was expecting to have a child who would survive like other children, a healthy baby with a good future, but because she was born like this, it was difficult for me and it took my idea far.” Participant 1 , some of the participants complained profoundly that life in caring for their children “ It is difficult, very difficult, in my daily life preparing his food to eat, crushing food, making sure that the food is appropriate for him, in a few words, it is difficult “huum” Participant 3 , and they find it very stressful to take care of these children. They feel stressed while looking after them, and this stress becomes worse as the child grows older. “It is stressful, I cannot lie you, This child cannot wake up and sit so that you can give her something to eat, I want to say when I am going to wake up her for feeding, I lift her and I put her on my thigh and her head on my chest and I need to cross her legs with mine like this and when she lifts her legs she becomes agitated and for feeding “ahhaa” if you see me feeding her, you can go back crying, I stand up here with my clothes dirty because food she spills out to me” Participant 8. Subtheme 2: Time-consuming and expensive care The majority of the participants expressed that caring for these children demands significant time and attention. They emphasized that it is impossible to combine caregiving alongside other responsibilities; they must pause everything else to pay attention to their children's needs fully, and they emphasized that it is nearly impossible to balance caregiving with other responsibilities such as employment, household duties, or personal needs. The participants explained that their children require constant supervision and assistance with basic daily activities, including feeding, bathing and toileting: “ It is not easy, because caring her is a time-consuming, it requires enough time to take care of her at nine years of age if she is not having this disability, she could be able to perform some activities on herself, but everything starting from dressing her, it requires enough time to take care of care” Participant 2 . The majority of participants also reported that raising these children requires financial stability. Children depend on everything, and taking care of them demands extra time and money to meet their needs. They mentioned that ensuring their well-being is quite expensive: “It is costful and difficult to the family, and as this is a permanent condition, it requires frequent health care seeking every episode of convulsion, which can occur in days or monthly” Participant 1. Many participants highlighted a significant challenge in providing food for these children, as many of them struggle with swallowing difficulties and refuse to eat any type of food. Participants noted that these children are selective about their food choices, often necessitating costly specialized diets to meet their needs. This situation incurs substantial expenses for their unique dietary requirements: “You see this child select food you cannot give him what you get and eat it; he requires me to find special food, and if I do not have a job, it becomes difficult to get what the child needs.” Participant 5. Subtheme 3: Marital issues and social stigma The majority of participants reported that having these children led to family problems. Some experienced family separation, conflicts, and marital issues as a result. The presence of children often amplifies existing tensions and can strain relationships, leading to difficulties in maintaining familial harmony. “I was living with him (husband) normally and after giving birth this child after clearly showing the signs of disability that were where conflict started, he was telling me, this child, from our family no disabled child and then I told him that have you ever seen a disabled child from my family and we continued to have misunderstanding and He hurts me and I was depressed owing to this child as I had been harassed and maltreated by partner and as long as days goes, he decreased money, he was giving me for family and I called my mum and she came here, I was almost to die from hunger finally, we divorced.” Participant 8 . The participants experienced social stigma, reporting instances of harassment and feeling that caring for these children was seen as a waste of time. They faced societal judgement and criticism, which made them feel marginalized and devalued for their efforts in raising children: “What are you struggling for, a child is now three years old without sitting, crawling and you are always going to hospital do you think your child will recover, you are struggling for nothing?” Participant 6. Subtheme 4: Physical and psychological health impacts The participants reported that caring for children with cerebral palsy has significant health impacts on them. They highlighted both psychological and physical challenges resulting from this responsibility. Psychologically, mothers experience stress and emotional strain because of the demanding nature of caring for children with special needs: “What is used to stress me, for example, I am having a sister and is having a child who is younger than mine but is able to lough, he is sharp, I can ask her to help me hold my child and respond to me that “I cannot hold a child whom I cannot lough and talk to him”, and everyone needs to hold the child of my sister because holding this one is tears.” Participant 4 . The constant worry about the well-being and future of their children often takes a toll on their mental health “Uhmm” in my way of thinking “it is not good even, my self-thinking is not processing well, because wherever I am, I used not to be stable because of the condition of the child” Participant 1 . Physically, mothers face challenges related to the physical demands of caregiving, such as lifting and assisting their children, which can lead to strain and fatigue: “You can see because I need to place my olecranon on my leg, this leg, here it is like there is a hole, I also feel numbness in these toes, but nothing I can do, I have to do it”; then, as long as days go, she becomes strong, by now me alone, I cannot lift her and take her for bathing, I need to have assistance to lift her to bathe and bring back her here.” Participant 8. Discussion This study explored the lived experiences of mothers caring for their children with cerebral palsy. The findings revealed that mothers' reactions to the diagnosis of their children's cerebral palsy were strongly affected by their lives. Many described their lives as difficult and expressed feelings of sadness because the information they received did not align with their expectations of having a healthy, normal child. The majority of mothers did not react positively to the diagnosis. However, most were somewhat reassured by the anticipatory prognosis based on their child's condition immediately after birth. These findings highlight significant implications for both the health of the child and the well-being of the mother, the initial emotional distress experienced by mothers upon receiving a diagnosis of cerebral palsy often marked by sadness, and a sense of loss can have a profound impact on maternal mental health. This psychological burden may, in turn, hinder a mother’s capacity to provide the consistent, nurturing care essential to the child’s development and quality of life. The reassurance provided by early anticipatory guidance and prognostic information suggests that timely, clear, and compassionate communication from healthcare providers may mitigate some of the emotional shock and support maternal adjustment. The findings of this study are supported by a study conducted by Guttmann in 2021 on mothers of children with cerebral palsy. In terms of the moment of diagnosis, mothers reported that, after learning that their child had CP, their daily lives underwent significant adjustments, increasing their responsibilities and demands, Following the diagnosis, mothers showed alternating emotions that were gradually replaced by their maternal caregiving skills, which restored their physical balance, and it was common to see health as being connected to the absence of disease and healing methods ( 21 ). According to Uldall, who stated that a diagnosis starts a new life for the parents of a child with cerebral palsy because it is stressful, parents will recall this experience for the rest of their life ( 7 ), which is consistent with the findings of this study, as mothers, after learning that their children have cerebral palsy, have experienced stressful situations and that their responsibility for the caring role has increased. This sentiment aligns closely with the findings of this study, which show that mothers, upon learning their child has CP, experience intense stress and a significant shift in their caregiving responsibilities and it implies the need to continuously support psychologically these mothers. In this study, the lived experiences of mothers caring for children with cerebral palsy in Rwanda revealed that mothers experience difficult and stressful life, expensive and time-consuming care, family conflicts, separation, marital issues and social stigma, which affect their general life. These findings are in line with the results of a study conducted in Zambia by Singogo and team, which revealed that mothers experienced negative views of family, friends, neighbors and health care professionals as well as social isolation and marital issues ( 20 ). Both studies underscore the profound and multidimensional challenges faced by mothers in Sub-Saharan African contexts, where social, economic, and cultural dynamics significantly shape the caregiving experience and highlights the urgent need for cross-cultural and regional interventions that address both the systemic and cultural roots of these difficulties. The findings of this study are similar to those of a study performed by Burkhard through analysis, which revealed that mothers experienced handling an unexpected life, juggling caregiver obligations, playing advocacy roles, and confronting an uncertain future ( 13 ). These findings are also in line with findings from a study performed in South Africa in 2022 by Madzhie and colleagues, which aimed to explore the challenges faced by mothers of CP-affected children; the findings revealed that mothers of CP children struggled with social and psychological issues, including loneliness, stress and a lack of sympathy from family and friends ( 12 ). The findings of this study are consistent with the results of a study conducted in South Africa in 2023 that aimed to explore the challenges faced by mothers caring for children with cerebral palsy, which revealed that mothers experience financial hardships, health issues, the mistreatment of caregivers by community members and the accessibility of transportation for caregivers and children( 16 ). These findings are also in line with findings from a study conducted in India by Nimbalkar and Team, which aimed to explore the psychosocial problems of parents of children with cerebral palsy and revealed that mothers experienced health issues, financial difficulties, joyous moments, and concerns about the future of the child ( 15 ). Mothers of children with cerebral palsy in Rwanda face challenges of financial strain, hopelessness of their future and food selection. According to Mushroom in her study in 2022, these findings are in line with growing evidence from the literature suggesting that mothers of CP children have particular financial difficulties; for most mothers, it can be challenging to meet their child's requirements while also making ends meet ( 18 ). In contrast, the findings of this study are not in line with those of a study conducted in Iran, which also aimed to explore the lived experiences of mothers and reported that their emotions (neutral, positive, and negative), self-expectations (efforts to better care for one's children), levels of relationships (self-isolation and relations with counterparts), lack of support from the child's father, others interfering with caring for the child, being looked upon, and lack financial and emotional support from the husband's family ( 1 ). This is due to differences in cultural norms, support systems, socioeconomic conditions, and healthcare infrastructure and these differences underline the importance of contextualizing caregiving experiences and designing support interventions that are culturally and structurally appropriate to mothers in Rwanda. This study, which was performed by Vadivelan and Team, aimed to explore the care burdens of caregivers of children with cerebral palsy and revealed that the women felt alone in their local neighborhood because there was little assistance from neighbors and that environmental stressors such as a lack of accessible public spaces, a lack of public transportation options and unwelcoming work schedules and environments were substantial sources of hardship ( 17 ). These findings are not in line with the findings of this study. A study by Dehghan and Team in Iran categorized the lived experience of Iranians into three main themes: attempting to participate in society while balancing one's positive and negative emotions and overcoming obstacles to mothers' social interaction ( 22 ). The experiences of mothers in Rwanda may reflect a different balance between formal support services and informal community networks, resulting in divergent caregiving burdens and coping mechanisms when compared to the findings in India and Iran. Strengths and limitations A key strength of this study lies in its focused exploration of mothers’ emotional and psychological responses to the diagnosis of their child’s cerebral palsy, offering rich, in-depth insights into a critical aspect of caregiving. Mothers are often the primary caregivers, and their experiences play a central role in shaping both the caregiving environment and the child's developmental outcomes. By centering their voices, the study captures valuable perspectives on the immediate and ongoing challenges they face; however, the study's exclusive focus on mothers also represents a limitation. It excludes the perspectives of fathers and other caregivers, who may have different emotional responses and roles in the caregiving process. This narrow scope may limit the generalizability of the findings and overlook the potential benefits of understanding family dynamics more broadly. Conclusion This study investigated the lived experiences of mothers caring for children with cerebral palsy in Rwanda, and the experiences of mothers caring for children with cerebral palsy are essential for programs that are responsible for addressing maternal health issues and children with disabilities. A thematic analysis identified difficult and stressful lives, marital issues and social stigma, and time-consuming and expensive care and health issues as the experiences of mothers in caring for their children, and financial strain, hopelessness of the future and food selection were identified as challenges faced by mothers. The analysis revealed that the majority of the participants did not react well after learning that their child had cerebral palsy, which caused them to have substantial responsibility for their children, who were dependent on all primary care. Study implications The findings of this study have significant implications for healthcare policy and support programs targeting maternal and child health in Rwanda. The lived experiences of mothers caring for children with cerebral palsy, characterized by emotional distress, social stigma, financial strain, and increased caregiving burdens, highlight a critical need for integrated support systems. These systems should include accessible mental health services, social protection initiatives, community awareness programs to reduce stigma, and financial assistance for families. Addressing these issues holistically can improve both maternal well-being and quality of life for children with cerebral palsy. Abbreviations CP : Cerebral Palsy, LMICs : low- and middle-income countries Declarations Acknowledgement The authors acknowledge mothers who participated in this study. Funding No source of fundings were used Competing interest Authors declare no competency of interest Clinical trial number : not applicable Consent to participate Every mother who participated consented by signing consent form before participation. 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We are IntechOpen , the world ’ s leading publisher of Open Access books Built by scientists , for scientists TOP 1 %. Intech [Internet]. 2022;i(2):13. Available from: https://doi.org/10.1016/j.jfutfo.2022.09.004%0Ahttps://www.redalyc.org/pdf/685/6851 4101.pdf%0Ahttps://doi.org/10.1007/s13668-023-00468-x%0Ahttps://suite.io/philip-mcintosh/1fjv2v4 Rentinck ICM, Ketelaar M, Jongmans MJ, Gorter JW. Parents of children with cerebral palsy: A review of factors related to the process of adaptation. Child Care Health Dev. 2007;33(2):161–9. Singogo C, Mweshi M, Rhoda A. Challenges experienced by mothers caring for children with cerebral palsy in Zambia. South African J Physiother. 2015;71(1):1–6. Rabello F, Prado HV, Angelo GL, Martins MB, Carneiro NCR, Borges-Oliveira AC. Mothers of a Child with Cerebral Palsy: Perception on the Diagnosis Moment and the Child’s General and Oral Health. Pesqui Bras Odontopediatria Clin Integr. 2021;21:1–9. Dehghan L, Dalvandi A, Rassafiani M, Hosseini SA, Dalvand H, Baptiste S. Social participation experiences of mothers of children with cerebral palsy in an Iranian context. Aust Occup Ther J. 2015 Dec 1;62(6):410–9. Additional Declarations No competing interests reported. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-7206126","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":501592332,"identity":"d89c1da9-c441-40ab-af05-fefd49223817","order_by":0,"name":"Jean Paul Niyigaba","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA6klEQVRIiWNgGAWjYDACZgaGAyDE2MAMpBkkZEjRwpYA0sJDrF0gC3gMQCzCWszZeQwPfqm5I888u+fzqxs1FjwM7IePbsCnxbKZx+CwzLFnho1zzm6zzjkGdBhPWtoNfFoMDgO1SLAdZmyckbvNOIcNqEWCx4wILf8O2zfOyHlmnPOPSC0HP7YdTgRqYX6c20aUFraCw4x9z5Ib5xwzY87tk+BhI+iX84c3f/zx7Y7txtnNjz/nfKuT42c/fAyvFgYGDgNmUFwYzmBgkwDx2fArBwH2B4w/gJS8BAPzB8KqR8EoGAWjYCQCAFNGUBiOapqzAAAAAElFTkSuQmCC","orcid":"","institution":"University of Rwanda","correspondingAuthor":true,"prefix":"","firstName":"Jean","middleName":"Paul","lastName":"Niyigaba","suffix":""},{"id":501592333,"identity":"2f0e55d7-35d8-4c9f-a3d3-ea78fc02340a","order_by":1,"name":"Thiery Claudien Uhawenimana","email":"","orcid":"","institution":"University of Rwanda","correspondingAuthor":false,"prefix":"","firstName":"Thiery","middleName":"Claudien","lastName":"Uhawenimana","suffix":""},{"id":501592335,"identity":"05815f16-710c-4b25-a90d-ab0d4ee9c7da","order_by":2,"name":"Vedaste Bagweneza","email":"","orcid":"","institution":"University of Rwanda","correspondingAuthor":false,"prefix":"","firstName":"Vedaste","middleName":"","lastName":"Bagweneza","suffix":""},{"id":501592338,"identity":"8107183c-0d95-4d97-bd50-767b7fbad668","order_by":3,"name":"Judith Mbarushimana","email":"","orcid":"","institution":"University of Rwanda","correspondingAuthor":false,"prefix":"","firstName":"Judith","middleName":"","lastName":"Mbarushimana","suffix":""},{"id":501592340,"identity":"7f85bc40-3afe-4497-9d59-41af36dafe31","order_by":4,"name":"Winifride Murekatete","email":"","orcid":"","institution":"","correspondingAuthor":false,"prefix":"","firstName":"Winifride","middleName":"","lastName":"Murekatete","suffix":""},{"id":501592345,"identity":"2a9ca105-ad57-434e-a794-ba061be6b9ca","order_by":5,"name":"larissa Frave Ishimwe","email":"","orcid":"","institution":"","correspondingAuthor":false,"prefix":"","firstName":"larissa","middleName":"Frave","lastName":"Ishimwe","suffix":""}],"badges":[],"createdAt":"2025-07-24 13:38:04","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-7206126/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-7206126/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s12887-026-06538-7","type":"published","date":"2026-01-27T15:58:13+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":101690651,"identity":"d058ce2d-6fb0-49e6-8115-039e7735b614","added_by":"auto","created_at":"2026-02-02 16:06:46","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":750692,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7206126/v1/811b5ab0-398b-450e-90b0-c8784c06128f.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Lived Experiences of Mothers Caring Children with Cerebral Palsy in Rwanda: A Phenomenological Study","fulltext":[{"header":"Background","content":"\u003cp\u003eBeing a parent is usually a happy experience for the family; however, parents may face significant challenges while caring for a child with physical or mental problems(\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). There are many different juvenile developmental abnormalities, including cerebral palsy (CP), which is known to have a substantial physical effect on children's functional development(\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). Cerebral palsy (CP) refers to a collection of lifelong movements and posture disorders that limit activity and are thought to be the result of nonprogressive brain abnormalities that occur during fetal or infant brain development(\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). The incidence of cerebral palsy (CP) varies from 0.8 to 4.4 per 1000 live births(\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). Children with CP may also have complex limits in their ability to feed themselves, dress themselves, take care of themselves in the bathroom, and move around(\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). Owing to these restrictions, long-term care demands that are substantially above what children typically require as they grow may become necessary(\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). In addition to secondary musculoskeletal issues, these motor disorders associated with cerebral palsy are frequently accompanied by sensory, perceptual, cognitive, behavioral, and communication abnormalities caused by epilepsy(\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). A systematic review performed by Chauhan and Team in India in 2019, which aimed to determine the prevalence of cerebral palsy, revealed that there were 2.95 cases of cerebral palsy per 1000 children surveyed, and the analysis by classification into rural, urban and combined rural and urban areas revealed a prevalence of 1.83, 2.29, and 4.37, respectively (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). In the same year, a study performed in China that aimed to determine the prevalence of cerebral palsy and associated factors revealed that the prevalence of cerebral palsy was 2.37 out of 1000 live births(\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). These statistics highlight that CP remains a significant public health issue in both low- and middle-income countries (LMICs), particularly where access to maternal and child health services is uneven. These prevalence rates underscore a substantial burden on already stretched healthcare systems in LMICs; in regions with limited support infrastructure, the responsibility of care often falls on families, particularly mothers. This can lead to reduced income, increased caregiver stress, and long-term economic vulnerability, especially when children cannot access interventions that may improve function and independence further. These statistics suggest a substantial and ongoing need for early diagnosis, access to specialized medical and rehabilitative care, and long-term support systems tailored to the needs of children with CP.\u003c/p\u003e\u003cp\u003eThe expectation is that a typical child will develop into an independent adult who contributes to their own economy as well as that of the family and country (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). As a result, a young child develops into a well-known prosperous adult who contributes to society as a whole. In addition, parents hope for a physically fit, morally upright, intelligent, and visually appealing child to grow up (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). This is not always possible with a disabled child, and parents can expect to feel stressed out from raising their children without the hope that the child would grow up to be independent (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). The mother experiences a shock when she finds that her child has a disability such as CP, she starts to feel lonely and alone, and she might not know where to look for further resources, help or support(\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e). A study conducted in Saudi Arabia in 2019, which aimed to explore the perceptions of mothers of children with CP, revealed that mothers experience stigma and discrimination within the community (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). Two qualitative studies conducted in Iran in 2019 by Mokhtari and in South Africa in 2023 by Manyuma reported that mothers of children with cerebral palsy felt self-isolated and socially excluded from their peers, were abandoned by their husband's family and others, lacked support from the child's father, and lacked financial and emotional support from the husband's family as a result of having children with cerebral palsy, which affected the quality of care for these children and ensured that they received healthcare services (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). The United States of America and Zimbabwean mothers who were providing care for a child or young adult with severe cerebral palsy described their experiences of handling an unexpected life, juggling caregiver obligations, playing advocacy roles, and confronting an uncertain future (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e). Chinese mothers experienced total responsibility, feeling alone, being worn out from care, feeling like prisoners and worrying about the future (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). Indian mothers experience disrupted social relationships, health issues, financial difficulties, joyous moments, and concerns about the future of the child (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). Discrimination, isolation, lack of family and societal support, poor access to health information and formal education, and other factors, such as a lack of knowledge of the cause and course of cerebral palsy, caregivers' loss of jobs, increased healthcare costs and immediate physical care burdens, were identified as challenges faced by mothers of children with cerebral palsy in a study performed in Ghana (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). Mothers caring for children with cerebral palsy in rural areas of South Africa experienced financial hardships, health issues, mistreatment by community members and the accessibility of transportation for them and their children (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThis research highlights a knowledge gap in terms of the complex lived experiences of mothers who look after children with cerebral palsy (CP) and the effects on their own well-being. In addition, the lived experiences and challenges of mothers caring for children with cerebral palsy are not known in Rwanda, and little is known about cerebral palsy in Rwanda. This study explored the lived experiences of mothers of children with cerebral palsy in Rwanda.\u003c/p\u003e\u003cp\u003eA child with cerebral palsy may require more emotional and physical energy to care for than a typical growing child does (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). Parents of children with CP and health problems seem to be under more stress than parents of children with Down syndrome because of their children's physical limitations, mothers who have a child with a disability such as CP must accept the diagnosis and change their expectations as well as how they provide care. Over time, there are particular demands and stressors that affect families of children with cerebral palsy (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e). Stress can have a detrimental effect on a mother's quality of life since mothers of children with CP often do not adhere to a well-balanced daily schedule, which may have resulted in a less satisfying use of time (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). Owing to functional limitations, some children with CP require support with daily activities from others, necessitating long-term caregiving that is far more demanding than that required for children who are typically developing. Children with long-term functional disabilities may require high levels of care, which can be stressful and harmful to the caregiver's physical and mental health. Rather, raising a child with a disability affects both parents' roles, but their daily lives are typically more affected because they are frequently the child's primary caregivers (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e). Mothers of children with cerebral palsy experience a journey full of love, resilience, and intense dedication. Along the way, they face challenges and moments of grace that shape not only their children's lives but also their own understanding of strength and kindness. The burden of cerebral palsy extends beyond the affected individuals to their families and communities, requiring significant resources for medical care, therapy, and supportive services. Mothers of children with CP face increased responsibilities and challenges, exacerbated by traditional gender roles that assign most home duties to women. In patriarchal societies such as Rwanda, these gender norms can limit women's rights and reinforce unequal power dynamics. Limited research exists on cerebral palsy in Rwanda, with existing studies suggesting that mothers face significant challenges. This study explored the lived experiences of Rwandan mothers of children with cerebral palsy and identified the specific difficulties they encounter.\u003c/p\u003e"},{"header":"Methodology","content":"\u003cp\u003e\u003cb\u003eDesign\u003c/b\u003e\u003c/p\u003e\u003cp\u003eResearchers have employed a phenomenological design to explore the lived experiences of mothers of children with cerebral disease; this design focuses on how individuals actually live their lives. The study was carried out over a three-month timeframe from March 2024 to May 2024. We employed a three-step approach involving hermeneutic theory in a systematic way, ensuring that the research process was both rigorous and meaningful.\u003c/p\u003e\u003cp\u003e\u003cb\u003eStudy population\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe participants in this study were mothers of children diagnosed with cerebral palsy. The study participants were limited to mothers because, according to researchers’ experiences, most of the time, at the time of health care seeking, they used to be accompanied by their mothers, as they are the primary caregivers of their children, and cultural norms in Rwanda prioritize women's involvement in care and home obligations. This selection ensures that the participants have direct and consistent caregiving experience. Excluding mothers of children with unrelated conditions or those who are not primary caregivers helps reduce variability and focuses the study on the specific experiences of mothers’ caregiving in CP.\u003c/p\u003e\u003cp\u003e\u003cb\u003eStudy setting\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThis study was conducted in two distinct settings in Rwanda: a rural catchment area served by Kirehe District Hospital and an urban center, HUMURA Day Center, located in Kigali-NDERA. These sites were purposively selected to ensure representation of both rural and urban contexts. Kirehe District Hospital serves a predominantly rural population and provides specialized care to children with disabilities, including those with cerebral palsy (CP). HUMURA Day Center is situated in an urban setting and is well known for its focus on providing comprehensive care and rehabilitation services to children with disabilities, particularly those with CP. Both settings were also selected on the basis of their accessibility to study participants.\u003c/p\u003e\u003cp\u003e\u003cb\u003eEthical considerations\u003c/b\u003e\u003c/p\u003e\u003cp\u003e The authors received ethical approval from the institutional review Board of the University of Rwanda College of Medicine and Health Science with reference number CMHS/IRB/067/2024, and the study settings granted permission to conduct this study. After approval was obtained, written informed consent was obtained from the mothers before participation. Confidentiality and anonymity were maintained, and participants’ rights were respected. Data were anonymized, audio-recorded and stored securely on a password-protected computer accessible only to researchers.\u003c/p\u003e\u003cp\u003e\u003cb\u003eData collection process\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe data collectors explained the study to the mothers who fit the criteria, and the interviewing process and the study's specifics were provided after the introduction. To learn more about the study and determine if mothers would be interested in participating, researchers contacted individuals who had shown interest in participating, and an interview was conducted by two researchers with a background of nursing. Written documentation and verbal explanations of privacy policies were provided to the participants prior to the interviews. The participants signed consent forms, and permission for recording was obtained from the participants before the interviews began. Individual semi structured interviews were used to gather the data in March 2024. The interview guide contained two sections, one for demographic information and another consisting of twelve questions regarding mothers’ experiences in caring for their children. The interviews lasted between 20 and 40 minutes, and the study samples were determined on the basis of the principle of data saturation, where from seven to ten participants interviewed, there was no new information from the participants, and the data collectors stopped recruiting new participants.\u003c/p\u003e\u003cp\u003e\u003cb\u003eAnalysis\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe interviews were audio-recorded and transcribed. After reading and rereading the transcripts, two male researchers performed thematic analysis, and by using NVIVO, a systematic identification and labelling of meaningful segments of data related to the research questions were performed. Codes that describe mothers’ experiences were also created. Themes emerged as long as researchers were organizing and grouping related codes into broader themes. These themes represent mothers’ reactions and shared experiences in caring for children with cerebral palsy.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eThis section presents key findings of the study.\u003c/p\u003e\u003cp\u003e\u003cb\u003eSample characteristics\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe majority of participants (4 out of 10) were between the ages of 36 and 40 years, while two were in the 46\u0026ndash;50 years age range. In terms of education, most participants (6 out of 10) had attained primary-level education, with two having completed either secondary or university-level studies. With respect to marital status, four participants were married, three were single, and three were divorced. Occupationally, half of the participants (5 out of 10) were unemployed. The remaining participants included three cultivators, one midwife, and one student. Concerning their children\u0026rsquo;s health, five mothers reported suspecting problems immediately after birth. Four noted concerns between the ages of one and two months, whereas one child was diagnosed with cerebral palsy between five and six months of age. Notably, none of the participants reported that their children had attended special schools.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eList of themes and subthemes\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"2\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eThemes\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eSubthemes\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e\u003cp\u003e\u003cb\u003eReactions of mothers after learning that their children have cerebral palsy\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eSaddened\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eAcceptance\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\" morerows=\"3\" rowspan=\"4\"\u003e\u003cp\u003e\u003cb\u003eExperiences of mothers in caring children with cerebral palsy\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eDifficult and Stressful life\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eTime consuming and Expensive care\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eMarital issues and Social Stigma\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003ePhysical and Psychological health impacts\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003ctfoot\u003e\u003c/tfoot\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eThemes\u003c/strong\u003e\u003c/p\u003e\u003cp\u003eTwo main themes were identified during thematic analysis: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) reactions of mothers after learning that their children have cerebral palsy and (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) experiences of mothers in caring for children with cerebral palsy, as shown in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e\u003cp\u003e\u003cb\u003eTheme 1: Reactions of mothers after learning that their children have cerebral palsy\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe first theme indicates mothers\u0026rsquo; reactions. Mothers who had children with cerebral palsy expressed different reactions after learning that their children were experiencing cerebral palsy and that feelings of sadness and acceptance were their reactions.\u003c/p\u003e\u003cp\u003e\u003cb\u003eSubtheme 1: Saddened\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe participants conveyed feelings of profound sadness upon discovering that their children had cerebral palsy: \u003cem\u003e\u0026ldquo;Huum, I felt saddened, very saddened, when you give birth, you hope to have a healthy baby who will be able to walk; to study, it is so sad to see other children of the same age as yours going to school but yours cannot and stay at home lying in the bed and is not even able to wake up himself, I felt so sad, but as long as days go, I accepted the situation\u003c/em\u003e.\u0026rdquo; Participant 3.\u003c/p\u003e\u003cp\u003e\u003cb\u003eSubtheme 2: Acceptance\u003c/b\u003e\u003c/p\u003e\u003cp\u003eSome mothers demonstrated acceptance of the child\u0026rsquo;s condition after learning that the child was experiencing cerebral palsy: \u003cem\u003e\u0026ldquo;I perceived it well, nothing I could change, I took it as normal, I did not get surprised it is all about God wish\u0026rdquo; Participant 10.\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eTheme 2: Mothers\u0026rsquo; experiences in caring for children with cerebral palsy\u003c/b\u003e\u003c/p\u003e\u003cp\u003eTheme 2 highlights the experiences of mothers in caring for their children with cerebral palsy. In terms of their experiences, four subthemes were identified: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) difficult and stressful life, (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) expensive and time-consuming care, (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) marital issues and social stigma, and (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) physical and psychological health impacts.\u003c/p\u003e\u003cp\u003e\u003cb\u003eSubtheme 1: Difficult and stressful life\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe majority of the participants responded that by the time they learned that their children are having cerebral palsy, it was difficult in their lives because their children were not meeting their expectations to have normal children: \u003cem\u003e\u0026ldquo;It was difficult, and it took me away, I was expecting to have a child who would survive like other children, a healthy baby with a good future, but because she was born like this, it was difficult for me and it took my idea far.\u0026rdquo; Participant 1\u003c/em\u003e, some of the participants complained profoundly that life in caring for their children \u003cb\u003e\u0026ldquo;\u003c/b\u003e\u003cem\u003eIt is difficult, very difficult, in my daily life preparing his food to eat, crushing food, making sure that the food is appropriate for him, in a few words, it is difficult \u0026ldquo;huum\u0026rdquo; Participant 3\u003c/em\u003e, and they find it very stressful to take care of these children. They feel stressed while looking after them, and this stress becomes worse as the child grows older. \u003cem\u003e\u0026ldquo;It is stressful, I cannot lie you, This child cannot wake up and sit so that you can give her something to eat, I want to say when I am going to wake up her for feeding, I lift her and I put her on my thigh and her head on my chest and I need to cross her legs with mine like this and when she lifts her legs she becomes agitated and for feeding \u0026ldquo;ahhaa\u0026rdquo; if you see me feeding her, you can go back crying, I stand up here with my clothes dirty because food she spills out to me\u0026rdquo; Participant 8.\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eSubtheme 2: Time-consuming and expensive care\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe majority of the participants expressed that caring for these children demands significant time and attention. They emphasized that it is impossible to combine caregiving alongside other responsibilities; they must pause everything else to pay attention to their children's needs fully, and they emphasized that it is nearly impossible to balance caregiving with other responsibilities such as employment, household duties, or personal needs. The participants explained that their children require constant supervision and assistance with basic daily activities, including feeding, bathing and toileting: \u003cb\u003e\u0026ldquo;\u003c/b\u003e\u003cem\u003eIt is not easy, because caring her is a time-consuming, it requires enough time to take care of her at nine years of age if she is not having this disability, she could be able to perform some activities on herself, but everything starting from dressing her, it requires enough time to take care of care\u0026rdquo; Participant 2\u003c/em\u003e. The majority of participants also reported that raising these children requires financial stability. Children depend on everything, and taking care of them demands extra time and money to meet their needs. They mentioned that ensuring their well-being is quite expensive: \u003cem\u003e\u0026ldquo;It is costful and difficult to the family, and as this is a permanent condition, it requires frequent health care seeking every episode of convulsion, which can occur in days or monthly\u0026rdquo; Participant 1.\u003c/em\u003e Many participants highlighted a significant challenge in providing food for these children, as many of them struggle with swallowing difficulties and refuse to eat any type of food. Participants noted that these children are selective about their food choices, often necessitating costly specialized diets to meet their needs. This situation incurs substantial expenses for their unique dietary requirements: \u003cem\u003e\u0026ldquo;You see this child select food you cannot give him what you get and eat it; he requires me to find special food, and if I do not have a job, it becomes difficult to get what the child needs.\u0026rdquo; Participant 5.\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eSubtheme 3: Marital issues and social stigma\u003c/b\u003e\u003c/p\u003e\u003cp\u003e The majority of participants reported that having these children led to family problems. Some experienced family separation, conflicts, and marital issues as a result. The presence of children often amplifies existing tensions and can strain relationships, leading to difficulties in maintaining familial harmony. \u003cem\u003e\u0026ldquo;I was living with him (husband) normally and after giving birth this child after clearly showing the signs of disability that were where conflict started, he was telling me, this child, from our family no disabled child and then I told him that have you ever seen a disabled child from my family and we continued to have misunderstanding and He hurts me and I was depressed owing to this child as I had been harassed and maltreated by partner and as long as days goes, he decreased money, he was giving me for family and I called my mum and she came here, I was almost to die from hunger finally, we divorced.\u0026rdquo; Participant 8\u003c/em\u003e. The participants experienced social stigma, reporting instances of harassment and feeling that caring for these children was seen as a waste of time. They faced societal judgement and criticism, which made them feel marginalized and devalued for their efforts in raising children: \u003cem\u003e\u0026ldquo;What are you struggling for, a child is now three years old without sitting, crawling and you are always going to hospital do you think your child will recover, you are struggling for nothing?\u0026rdquo; Participant 6.\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eSubtheme 4: Physical and psychological health impacts\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe participants reported that caring for children with cerebral palsy has significant health impacts on them. They highlighted both psychological and physical challenges resulting from this responsibility. Psychologically, mothers experience stress and emotional strain because of the demanding nature of caring for children with special needs: \u003cem\u003e\u0026ldquo;What is used to stress me, for example, I am having a sister and is having a child who is younger than mine but is able to lough, he is sharp, I can ask her to help me hold my child and respond to me that \u0026ldquo;I cannot hold a child whom I cannot lough and talk to him\u0026rdquo;, and everyone needs to hold the child of my sister because holding this one is tears.\u0026rdquo; Participant 4\u003c/em\u003e. The constant worry about the well-being and future of their children often takes a toll on their mental health \u003cem\u003e\u0026ldquo;Uhmm\u0026rdquo; in my way of thinking \u0026ldquo;it is not good even, my self-thinking is not processing well, because wherever I am, I used not to be stable because of the condition of the child\u0026rdquo; Participant 1\u003c/em\u003e. Physically, mothers face challenges related to the physical demands of caregiving, such as lifting and assisting their children, which can lead to strain and fatigue: \u003cem\u003e\u0026ldquo;You can see because I need to place my olecranon on my leg, this leg, here it is like there is a hole, I also feel numbness in these toes, but nothing I can do, I have to do it\u0026rdquo;; then, as long as days go, she becomes strong, by now me alone, I cannot lift her and take her for bathing, I need to have assistance to lift her to bathe and bring back her here.\u0026rdquo; Participant 8.\u003c/em\u003e\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study explored the lived experiences of mothers caring for their children with cerebral palsy. The findings revealed that mothers' reactions to the diagnosis of their children's cerebral palsy were strongly affected by their lives. Many described their lives as difficult and expressed feelings of sadness because the information they received did not align with their expectations of having a healthy, normal child. The majority of mothers did not react positively to the diagnosis. However, most were somewhat reassured by the anticipatory prognosis based on their child's condition immediately after birth.\u003c/p\u003e\u003cp\u003eThese findings highlight significant implications for both the health of the child and the well-being of the mother, the initial emotional distress experienced by mothers upon receiving a diagnosis of cerebral palsy often marked by sadness, and a sense of loss can have a profound impact on maternal mental health. This psychological burden may, in turn, hinder a mother\u0026rsquo;s capacity to provide the consistent, nurturing care essential to the child\u0026rsquo;s development and quality of life. The reassurance provided by early anticipatory guidance and prognostic information suggests that timely, clear, and compassionate communication from healthcare providers may mitigate some of the emotional shock and support maternal adjustment.\u003c/p\u003e\u003cp\u003eThe findings of this study are supported by a study conducted by Guttmann in 2021 on mothers of children with cerebral palsy. In terms of the moment of diagnosis, mothers reported that, after learning that their child had CP, their daily lives underwent significant adjustments, increasing their responsibilities and demands, Following the diagnosis, mothers showed alternating emotions that were gradually replaced by their maternal caregiving skills, which restored their physical balance, and it was common to see health as being connected to the absence of disease and healing methods (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eAccording to Uldall, who stated that a diagnosis starts a new life for the parents of a child with cerebral palsy because it is stressful, parents will recall this experience for the rest of their life (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e), which is consistent with the findings of this study, as mothers, after learning that their children have cerebral palsy, have experienced stressful situations and that their responsibility for the caring role has increased. This sentiment aligns closely with the findings of this study, which show that mothers, upon learning their child has CP, experience intense stress and a significant shift in their caregiving responsibilities and it implies the need to continuously support psychologically these mothers.\u003c/p\u003e\u003cp\u003eIn this study, the lived experiences of mothers caring for children with cerebral palsy in Rwanda revealed that mothers experience difficult and stressful life, expensive and time-consuming care, family conflicts, separation, marital issues and social stigma, which affect their general life. These findings are in line with the results of a study conducted in Zambia by Singogo and team, which revealed that mothers experienced negative views of family, friends, neighbors and health care professionals as well as social isolation and marital issues (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e). Both studies underscore the profound and multidimensional challenges faced by mothers in Sub-Saharan African contexts, where social, economic, and cultural dynamics significantly shape the caregiving experience and highlights the urgent need for cross-cultural and regional interventions that address both the systemic and cultural roots of these difficulties.\u003c/p\u003e\u003cp\u003eThe findings of this study are similar to those of a study performed by Burkhard through analysis, which revealed that mothers experienced handling an unexpected life, juggling caregiver obligations, playing advocacy roles, and confronting an uncertain future (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). These findings are also in line with findings from a study performed in South Africa in 2022 by Madzhie and colleagues, which aimed to explore the challenges faced by mothers of CP-affected children; the findings revealed that mothers of CP children struggled with social and psychological issues, including loneliness, stress and a lack of sympathy from family and friends (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe findings of this study are consistent with the results of a study conducted in South Africa in 2023 that aimed to explore the challenges faced by mothers caring for children with cerebral palsy, which revealed that mothers experience financial hardships, health issues, the mistreatment of caregivers by community members and the accessibility of transportation for caregivers and children(\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). These findings are also in line with findings from a study conducted in India by Nimbalkar and Team, which aimed to explore the psychosocial problems of parents of children with cerebral palsy and revealed that mothers experienced health issues, financial difficulties, joyous moments, and concerns about the future of the child (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eMothers of children with cerebral palsy in Rwanda face challenges of financial strain, hopelessness of their future and food selection. According to Mushroom in her study in 2022, these findings are in line with growing evidence from the literature suggesting that mothers of CP children have particular financial difficulties; for most mothers, it can be challenging to meet their child's requirements while also making ends meet (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eIn contrast, the findings of this study are not in line with those of a study conducted in Iran, which also aimed to explore the lived experiences of mothers and reported that their emotions (neutral, positive, and negative), self-expectations (efforts to better care for one's children), levels of relationships (self-isolation and relations with counterparts), lack of support from the child's father, others interfering with caring for the child, being looked upon, and lack financial and emotional support from the husband's family (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). This is due to differences in cultural norms, support systems, socioeconomic conditions, and healthcare infrastructure and these differences underline the importance of contextualizing caregiving experiences and designing support interventions that are culturally and structurally appropriate to mothers in Rwanda.\u003c/p\u003e\u003cp\u003eThis study, which was performed by Vadivelan and Team, aimed to explore the care burdens of caregivers of children with cerebral palsy and revealed that the women felt alone in their local neighborhood because there was little assistance from neighbors and that environmental stressors such as a lack of accessible public spaces, a lack of public transportation options and unwelcoming work schedules and environments were substantial sources of hardship (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). These findings are not in line with the findings of this study. A study by Dehghan and Team in Iran categorized the lived experience of Iranians into three main themes: attempting to participate in society while balancing one's positive and negative emotions and overcoming obstacles to mothers' social interaction (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e). The experiences of mothers in Rwanda may reflect a different balance between formal support services and informal community networks, resulting in divergent caregiving burdens and coping mechanisms when compared to the findings in India and Iran.\u003c/p\u003e\u003cp\u003e\u003cb\u003eStrengths and limitations\u003c/b\u003e\u003c/p\u003e\u003cp\u003eA key strength of this study lies in its focused exploration of mothers\u0026rsquo; emotional and psychological responses to the diagnosis of their child\u0026rsquo;s cerebral palsy, offering rich, in-depth insights into a critical aspect of caregiving. Mothers are often the primary caregivers, and their experiences play a central role in shaping both the caregiving environment and the child's developmental outcomes. By centering their voices, the study captures valuable perspectives on the immediate and ongoing challenges they face; however, the study's exclusive focus on mothers also represents a limitation. It excludes the perspectives of fathers and other caregivers, who may have different emotional responses and roles in the caregiving process. This narrow scope may limit the generalizability of the findings and overlook the potential benefits of understanding family dynamics more broadly.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis study investigated the lived experiences of mothers caring for children with cerebral palsy in Rwanda, and the experiences of mothers caring for children with cerebral palsy are essential for programs that are responsible for addressing maternal health issues and children with disabilities. A thematic analysis identified difficult and stressful lives, marital issues and social stigma, and time-consuming and expensive care and health issues as the experiences of mothers in caring for their children, and financial strain, hopelessness of the future and food selection were identified as challenges faced by mothers. The analysis revealed that the majority of the participants did not react well after learning that their child had cerebral palsy, which caused them to have substantial responsibility for their children, who were dependent on all primary care.\u003c/p\u003e\u003cp\u003e\u003cb\u003eStudy implications\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe findings of this study have significant implications for healthcare policy and support programs targeting maternal and child health in Rwanda. The lived experiences of mothers caring for children with cerebral palsy, characterized by emotional distress, social stigma, financial strain, and increased caregiving burdens, highlight a critical need for integrated support systems. These systems should include accessible mental health services, social protection initiatives, community awareness programs to reduce stigma, and financial assistance for families. Addressing these issues holistically can improve both maternal well-being and quality of life for children with cerebral palsy.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003e\u003cstrong\u003eCP\u003c/strong\u003e: Cerebral Palsy,\u003cstrong\u003e\u0026nbsp;LMICs\u003c/strong\u003e: low- and middle-income countries\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAcknowledgement\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors acknowledge mothers who participated in this study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNo source of fundings were used\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interest\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAuthors declare no competency of interest\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eClinical trial number\u003c/strong\u003e: not applicable\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eEvery mother who participated consented by signing consent form before participation.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eHuman ethic\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study got ethical clearance from institutional review board from the university of Rwanda, college of Medicine and health science with reference number of CMHS/IRB/067/2024\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent to publish\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eParticipants understood the implication of publication and agreed to it.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eMokhtari M, Abootorabi F. 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Prevalence of Cerebral Palsy in Indian Children: A Systematic Review and Meta-Analysis. Indian J Pediatr. 2019;86(12):1124\u0026ndash;30. \u003c/li\u003e\n\u003cli\u003eYuan J, Wang J, Jieqiong MA, Zhu D, Zhang Z, Li J. Paediatric cerebral palsy prevalence and high-risk factors in Henan Province, central China. J Rehabil Med. 2019;51(1):47\u0026ndash;53. \u003c/li\u003e\n\u003cli\u003eUldall P. Everyday life and social consequences of cerebral palsy [Internet]. 1st ed. Vol. 111, Handbook of Clinical Neurology. Elsevier B.V.; 2013. 203\u0026ndash;207 p. Available from: http://dx.doi.org/10.1016/B978-0-444-52891-9.00020-8\u003c/li\u003e\n\u003cli\u003eHuang YP, Kellett UM, St John W. Cerebral palsy: Experiences of mothers after learning their child\u0026rsquo;s diagnosis. J Adv Nurs. 2010;66(6):1213\u0026ndash;21. \u003c/li\u003e\n\u003cli\u003eCook JE, Tovin MM, Kenyon LK. Understanding the Lived Experience of Caring for a Child With Severe Cerebral Palsy: A Critical Step Toward Psychologically Informed Family-Centered Care. Phys Ther. 2022 Apr 1;102(4). \u003c/li\u003e\n\u003cli\u003eMohamed Madi S, Mandy A, Aranda K. The Perception of Disability Among Mothers Living With a Child With Cerebral Palsy in Saudi Arabia. Glob Qual Nurs Res. 2019;6. \u003c/li\u003e\n\u003cli\u003eMwinbam MM, Suglo JN, Agyeman YN, Kukeba MW. Family caregivers\u0026rsquo; experience of care with a child with cerebral palsy: The lived experiences and challenges of caregivers in a resource-limited setting in northern Ghana. BMJ Paediatr Open. 2023;7(1). \u003c/li\u003e\n\u003cli\u003eMadzhie M, Mphephu KE, Baloyi V, Chueng M. The challenges experienced by mothers with children suffering from cerebral palsy: A study conducted at Mutale Municipality, South Africa. Cogent Psychol [Internet]. 2022;9(1). Available from: https://doi.org/10.1080/23311908.2022.2043020\u003c/li\u003e\n\u003cli\u003eBurkhard A. A Different Life: Caring for an Adolescent or Young Adult With Severe Cerebral Palsy. J Pediatr Nurs [Internet]. 2013;28(4):357\u0026ndash;63. Available from: http://dx.doi.org/10.1016/j.pedn.2013.01.001\u003c/li\u003e\n\u003cli\u003eDambi JM, Jelsma J, Mlambo T. Caring for a child with Cerebral Palsy: The experience of Zimbabwean mothers. African J Disabil. 2015 Aug 13;4(1). \u003c/li\u003e\n\u003cli\u003eNimbalkar S, Raithatha S, Shah R, Panchal DA. A Qualitative Study of Psychosocial Problems among Parents of Children with Cerebral Palsy Attending Two Tertiary Care Hospitals in Western India. ISRN Fam Med. 2014;2014:1\u0026ndash;6. \u003c/li\u003e\n\u003cli\u003eManyuma D, Maluleke M, Raliphaswa NS, Masutha TC, Rangwaneni ME, Thabathi TE, et al. Title: Caring for Children with Cerebral Palsy: A Challenge to Caregivers in Rural Areas of South Africa. Children. 2023 Mar 1;10(3). \u003c/li\u003e\n\u003cli\u003eVadivelan K, Sekar P, Sruthi SS, Gopichandran V. Burden of caregivers of children with cerebral palsy: An intersectional analysis of gender, poverty, stigma, and public policy. BMC Public Health. 2020;20(1):1\u0026ndash;8. \u003c/li\u003e\n\u003cli\u003eMushrooms G, Jyot D, Mendon S, Books C, Gopal J, Sivanesan I, et al. We are IntechOpen , the world \u0026rsquo; s leading publisher of Open Access books Built by scientists , for scientists TOP 1 %. Intech [Internet]. 2022;i(2):13. Available from: https://doi.org/10.1016/j.jfutfo.2022.09.004%0Ahttps://www.redalyc.org/pdf/685/6851\n4101.pdf%0Ahttps://doi.org/10.1007/s13668-023-00468-x%0Ahttps://suite.io/philip-mcintosh/1fjv2v4\u003c/li\u003e\n\u003cli\u003eRentinck ICM, Ketelaar M, Jongmans MJ, Gorter JW. Parents of children with cerebral palsy: A review of factors related to the process of adaptation. Child Care Health Dev. 2007;33(2):161\u0026ndash;9. \u003c/li\u003e\n\u003cli\u003eSingogo C, Mweshi M, Rhoda A. Challenges experienced by mothers caring for children with cerebral palsy in Zambia. South African J Physiother. 2015;71(1):1\u0026ndash;6. \u003c/li\u003e\n\u003cli\u003eRabello F, Prado HV, Angelo GL, Martins MB, Carneiro NCR, Borges-Oliveira AC. Mothers of a Child with Cerebral Palsy: Perception on the Diagnosis Moment and the Child\u0026rsquo;s General and Oral Health. Pesqui Bras Odontopediatria Clin Integr. 2021;21:1\u0026ndash;9. \u003c/li\u003e\n\u003cli\u003eDehghan L, Dalvandi A, Rassafiani M, Hosseini SA, Dalvand H, Baptiste S. Social participation experiences of mothers of children with cerebral palsy in an Iranian context. Aust Occup Ther J. 2015 Dec 1;62(6):410\u0026ndash;9. \u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-pediatrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bped","sideBox":"Learn more about [BMC Pediatrics](http://bmcpediatr.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bped/default.aspx","title":"BMC Pediatrics","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"lived experiences, caring and children with cerebral palsy","lastPublishedDoi":"10.21203/rs.3.rs-7206126/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7206126/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e\u003cp\u003eMothers of children with CP face increased responsibilities and challenges, exacerbated by traditional gender roles that assign most home duties to women. In patriarchal societies such as Rwanda, these gender norms can limit women's rights and reinforce unequal power dynamics. Despite the joy that children with disabilities may bring, caregiving imposes emotional, physical, and financial burdens, affecting caregivers' overall well-being and marital relationships. Research on cerebral palsy in Rwanda is limited, with existing studies suggesting that mothers face significant challenges.\u003c/p\u003e\u003ch2\u003eObjective\u003c/h2\u003e\u003cp\u003eThis study explored the lived experiences of mothers of children with cerebral palsy and identified the specific difficulties they encounter.\u003c/p\u003e\u003ch2\u003eMethodology:\u003c/h2\u003e\u003cp\u003eThis study used a phenomenological hermeneutic study design to explore the lived experiences of mothers as well as their challenges in caring for children with cerebral palsy. A purposive sample of ten mothers of children with cerebral palsy was recruited. The key informants\u0026rsquo; interviews were conducted via an interview guide, and NVIVO was used to identify and label meaningful segments of data related to the research questions systematically. Codes that describe challenges faced by mothers and emotional experiences were created. Themes emerged as long as researchers were organizing and grouping related codes into broader themes.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e\u003cp\u003eMothers who are responsible for the care of their children with cerebral palsy encounter challenging and stressful circumstances, including marital difficulties, time-consuming care, financial burdens and social stigma. Additionally, they grapple with feelings of hopelessness regarding the future of their children and struggle to select appropriate food for their children.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e\u003cp\u003eThe findings suggest that there is a need to support mothers of children with cerebral palsy to improve the quality of life of their children. Health facilities should help these mothers care for and treat their children.\u003c/p\u003e","manuscriptTitle":"Lived Experiences of Mothers Caring Children with Cerebral Palsy in Rwanda: A Phenomenological Study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-08-22 16:41:00","doi":"10.21203/rs.3.rs-7206126/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-08-28T06:56:43+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-08-26T17:50:23+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-08-23T15:19:00+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"87657392451350259750489433370919447734","date":"2025-08-17T23:19:11+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"251048444299808289117893110666493274927","date":"2025-08-15T13:18:21+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-08-15T13:13:07+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2025-08-07T05:58:35+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-08-06T15:58:59+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-08-06T15:57:28+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Pediatrics","date":"2025-07-24T13:22:23+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-pediatrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bped","sideBox":"Learn more about [BMC Pediatrics](http://bmcpediatr.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bped/default.aspx","title":"BMC Pediatrics","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"2f0bb0c7-6fb6-489e-83ee-0f20592c6726","owner":[],"postedDate":"August 22nd, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2026-02-02T16:03:24+00:00","versionOfRecord":{"articleIdentity":"rs-7206126","link":"https://doi.org/10.1186/s12887-026-06538-7","journal":{"identity":"bmc-pediatrics","isVorOnly":false,"title":"BMC Pediatrics"},"publishedOn":"2026-01-27 15:58:13","publishedOnDateReadable":"January 27th, 2026"},"versionCreatedAt":"2025-08-22 16:41:00","video":"","vorDoi":"10.1186/s12887-026-06538-7","vorDoiUrl":"https://doi.org/10.1186/s12887-026-06538-7","workflowStages":[]},"version":"v1","identity":"rs-7206126","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7206126","identity":"rs-7206126","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}