Experiences of Caregivers and Care Needs of Children with Congenital Heart Disease at Kenyatta National Hospital

Experiences of Caregivers and Care Needs of Children with Congenital Heart Disease at Kenyatta National Hospital | 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 Experiences of Caregivers and Care Needs of Children with Congenital Heart Disease at Kenyatta National Hospital Mahad Abdirahman, Ombaba Osano, Ruth Nduati This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-6905975/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 13 You are reading this latest preprint version Abstract Background Congenital heart disease (CHD) is a commonly diagnosed congenital disorder that affects approximately 0.8–1.2% of live births worldwide. This disorder has been significantly associated with an increased burden of care among caregivers. Thus, understanding the experiences and care needs of these children would be fundamental in defining an improved focus on their wellbeing. However, in the local context, these components have not been fully investigated. Purpose of the study: To assess the experiences of caregivers and the needs of children with congenital heart disease at Kenyatta National Hospital. Methods This study adopted a cross-sectional method utilizing both qualitative and quantitative approaches. The quantitative arm was conducted before the qualitative arm. The quantitative data were collected consecutively from caregivers of children attending clinics and those admitted to pediatric wards. Descriptive analysis was performed to describe the study population, where frequencies and percentages were used for categorical data and means and standard deviations were used for continuous data. Logistic regression was used to investigate factors associated with caregiver mental wellbeing. Thematic analysis was performed to develop themes from the qualitative data. Results A total of 79.3% of the caregivers were female, 40.7% had secondary-level education, and 64% were unemployed. The mode of delivery was also assessed, where 78% of the mothers had vaginal deliveries. The common types of CHD identified included atrioventricular septal defects (AVSDs) (32.7%), patent ductus arteriosus (PDA) (28.2%) and atrial septal defects (ASDs) (10.5%). The results also revealed that 40.7% had medical insurance, 22.7% received some form of financial support from the government, and 39.3% were able to perform some physical activities. The assessment of the mental well-being of the caregivers revealed that 68% had depression and 73% had mild/moderate burnout. Four main themes and seven subthemes were identified. The themes identified include shock and denial, psycho-social wellbeing, uncertainty about the future and coping strategies. Conclusion The findings revealed that the level of depression and burnout among caregivers of CHD patients is high, which highlights the need to ensure that the needs of these children are met. The creation of strong support groups should be integral in championing the needs of children with CHD. Congenital heart disease congenital disorders caregiver experiences mental wellbeing pediatric care Figures Figure 1 Figure 2 INTRODUCTION Congenital heart defects are structural or functional heart problems caused by defects or abnormalities that exist at birth and affect approximately 8–12 of every 1,000 live births, accounting for two-thirds of all major birth defects 1 . Globally, the reported prevalence of CHD births has increased over time, from 0.6 per 1,000 live births in the 1930s to 9.1 per 1,000 live births 2 . The development of safe diagnostic imaging, especially nonionizing techniques such as 3D echocardiography, and the implementation of nationwide programs for prenatal neonatal screening are some of the plausible reasons for the apparent increase in the prevalence of CHD. For example, in the United States, which is one of the most technologically advanced nations, CHD is the most common type of birth defect 3 . Owing to a lack of screening and diagnosing problems rather than the absence of defects, the prevalence of CHD in many other parts of the world remains unknown. According to the Kenya Ministry of Health, approximately 200,000 children under the age of 18 have heart disease, and over 10,000 babies are born with CHD each year. Advances in the implementation of high-impact child survival strategies, which include childhood immunization, breastfeeding and care of critically ill children, are driving an epidemiological transition from infectious diseases as the leading cause of morbidity and mortality and the emergence of noncommunicable diseases, and CHD is one of them 4 . Changes in medical and surgical techniques have led CHD to be considered a major paediatric illness. The case fatality associated with this condition is approximately 3–7 percent in developed settings, whereas in developing countries, the rate is significantly at approximately 20 percent 5 . The common symptom among children with congenital heart disease is developmental delay, which is present in approximately 87% of these children 6 . Caring for a child with a chronic illness involves many challenges that affect the well-being of the carer. Parents of children with CHD are faced with the uncertainty of their children living past adulthood, including different challenges such as regular medical appointments to review the wellbeing of their children 7 . Providing medical and emotional care for their newborn child is typically a difficult challenge for the family unit. Furthermore, these parents face increased financial insecurity as a result of unemployment, sick leave, and medical costs associated with caring for their children, all of which contribute to a lower standard of living 8 . The government of Kenya has put in place strategic social protection measures that have focused on improving the needs and well-being of all children, including those with chronic diseases such as CHD. To be effective, the services need to be responsive to the actual needs. There is limited information on caregiver experiences when caring for the well-being of children with CHD and their social and health needs 7 . The KNH provides only dedicated paediatric cardiology services in the public sector. The patients who utilize these services are from all over Kenya. Understanding the needs of families of children with chronic illness, especially a condition such as CHD, which requires timely intervention to prevent severe morbidity, would enable health services to offer appropriate multidisciplinary services. Past studies have shown that parents/caregivers of children with congenital heart disease have stressful experiences that are hopeful, hopeless and uncertain with respect to the future. In the local context, the needs and well-being of caregivers of children with congenital heart diseases have not been explored. This study seeks to describe the experiences of caregivers and the needs of children with congenital heart disease at Kenyatta National Hospital. METHODS AND MATERIALS Study design This study utilized a cross-sectional study design utilizing quantitative and quantitative techniques. Study setting The study was conducted at the Kenyatta National Hospital Pediatric Unit, both outpatient and inpatient. Kenyatta National Hospital is the largest referral hospital in East and Central Africa, with a bed capacity of approximately 2,000. The hospital is located 5 km from the Nairobi Central Business Unit. The hospital complex houses Kenya Medical training college and the University of Nairobi College of Health Sciences. The hospital caters to approximately 30,000 pediatric inpatients each year. Pediatric patients with congestive heart failure are managed in pediatric wards. The children are usually admitted together with their parents or guardians. They are then discharged through the pediatric outpatient cardiology clinic. Study population Caregivers of children aged 12 years and younger who were diagnosed with congenital heart disease at Kenyatta National Hospital and who provided informed consent were recruited. Caregivers/parents of children aged less than or equal to 12 years who were diagnosed with congenital heart disease and who declined to provide consent were excluded. Sample size determination A sample size of 150 caregivers was included in the quantitative arm of the study via Fischer’s formula. The study included two focus group discussions (FGDs). The outpatient focus group discussion (FGD1) included seven participants, whereas the inpatient focus group discussion (FGD2) included six participants. A focus group including 6–8 participants is appropriate considering that it is easy to manage and that participants can interact freely to provide honest responses. This was essential in identifying challenges and coping strategies that they have put in place to help improve the well-being of their children. Sampling technique A consecutive sampling technique was used. The caregivers of children with CHD were sampled consecutively into the quantitative arm of the study until the sample size was reached. A purposive sampling method was used to identify the study. Eligible participants were invited to participate in the study. Purposive sampling is a nonprobability sampling method in which subjects are chosen on the basis of population characteristics and the aims of the study. Data collection procedure Quantitative data collection The data collection process began after approval from the KNH-UoN ERC and Kenyatta National Hospital administration. For the quantitative evaluation, at the outpatient clinic, the principal recruited the first caregiver who met the inclusion criteria and provided consent as the starting point. Other respondents were selected each clinic day consecutively until the sample size was reached. In the pediatric wards, the principal investigator recruited caregivers who met the inclusion criteria consecutively. For the qualitative arm, the participants were assessed to ensure that they did not participate in the quantitative data collection process. The researcher recruited focus group participants from the population that did not participate in the questionnaire. The participants provided their contacts to the researcher, who agreed to participate in the focus group discussions at a later date to be communicated. The FGDs were moderated by the researcher, and a note-taker was used to document the proceedings of the session. The session was audiotaped and transcribed verbatim to derive meaning. A focus group discussion guide was used to assess challenges and mitigation strategies that caregivers are putting in place to improve their well-being and reduce the burden. The data collection tools used in this study were developed from the literature for the purpose of this study. (Attached supplementary file) Study variables Independent variables Caregiver characteristics (age, marital status, level of education, employment status, monthly average income, residence) and child characteristics (age, time since diagnosis, treatment, surgery conducted, education, insurance, and enrollment in the social protection program). Dependent variable Experiences of caregivers (positive, negative, mixed) Data quality control The data collection tool was completed by a trained research assistant under the guidance and supervision of the principal investigator to obtain demographic and clinical data. The research assistants who were recruited had a minimum diploma in the nursing qualification and were therefore knowledgeable. Additionally, the research assistants were trained for two days to ensure that they were well conversant with the research tool and ethical research practices. The researcher led the data collection procedure and continuously monitored the research assistants to ensure that they collected quality data. To avoid duplicate findings, the questionnaires were assigned serial numbers. Following collection, the data were reviewed on a weekly basis to ensure completeness. Continuous data were entered into a password-protected Epi data database. The Principal Investigator recruited a qualified statistician who assessed, cleaned and analysed the data to achieve the intended goals. Data analysis Quantitative data analysis Data cleaning and analysis were performed via Stata version 17. Descriptive statistics were used to analyse the sociodemographic and clinical characteristics of the patients and are presented as frequencies and percentages for categorical data and as the means with standard deviations for continuous data. Binary logistic regression was used to investigate the associations among caregiver and child characteristics and depression. The level of significance was assessed at p < 0.05. Qualitative data analysis The researcher familiarized himself with the data through review of the transcripts and the notes written during data collection. The original recordings were transcribed verbatim by a trained and qualified transcriber together with the researcher. Independent transcription was performed by the researcher to verify the consistency of the data in the transcripts as one of the verification processes to enhance trustworthiness. Different categories were identified and assigned codes to describe the content. As an analytic strategy, content analysis of the data was performed inductively through a line-by-line manual coding process. This was done to identify themes on the basis of the underlying study objectives. Dedoose version 9 software was used for data analysis. Ethical consideration Ethical approval was obtained from Kenyatta National Hospital and the University of Nairobi (KNH-UoN ERC) reference number: P250/03/2022. This study was performed in accordance with the Declaration of Helsinki. RESULTS This study sought to explore the experiences of caregivers and the needs of children with congenital heart disease at Kenyatta National Hospital. A total of 150 caregivers were recruited to participate in the study. All 150 questionnaires were returned for analysis. Characteristics of caregivers of children with congenital heart disease at Kenyatta National Hospital The results revealed that 79.3% (119) of the participants were female, and 61.3% (92) were aged 30 years and above. In terms of residence, 56.7% (85) of the respondents resided in rural settings. Furthermore, 40.7% (61) had a secondary level of education, 64% (96) were unemployed, and 36% (54) had an average monthly income of less than Ksh.10,000. In addition, 53.3% (80) of the respondents had three or more children. The presence of underlying conditions revealed that 10.7% (16) of the participants had underlying conditions, including hypertension and diabetes mellitus. The findings also revealed that 78% (n = 117) had vaginal delivery, as shown in Table 1 . Table 1 Characteristics of caregivers of children with congenital heart disease at Kenyatta National Hospital Caregiver characteristics Frequency Percent Gender Male 31 20.7 Female 119 79.3 Marital status Single 63 42.0 Married 87 58.0 Age < 30 years 58 38.7 30 years and above 92 61.3 Residence Urban 65 43.3 Rural 85 56.7 Education level No formal education 4 2.7 Primary level 46 30.7 Secondary level 61 40.7 Tertiary level 39 26.0 Employment status Employed 54 36.0 Unemployed 96 64.0 Average monthly income Less than Ksh,10,000 93 62.0 Ksh.10,000–20,000 33 22.0 > 20,000 24 16.0 Number of children < 3 70 46.7 3 and above 80 53.3 Presence of underlying conditions Yes 16 10.7 No 134 89.3 Comorbidities (n = 16) Hypertension 6 37.5 Diabetes mellitus 4 25 Both hypertension and Diabetes 5 31.3 Place of delivery KNH 16 10.7 Home 7 4.7 Other health facility 127 84.7 Mode of delivery Vaginal delivery 117 78.0 Caesarean section 33 22.0 Characteristics of children diagnosed with congenital heart disease at Kenyatta National Hospital The findings revealed that 53.3% (80) of the patients were female. In terms of birth order, 34% (51) were second-born children. Age at diagnosis revealed that 84.7% (127) of the patients were diagnosed with CHD when they were less than six months of life. The common presenting symptoms identified included fast breathing (53.3%, 80%), rapid heartbeat (36.7%, 55%), coughing (36%, 54%) and bluish color (33.3%, 50%). The majority of the patients, 86% (129), were referred to KNH. In terms of treatment modality, 74.7% (112) were on medication, whereas 34% (51) had surgery, as shown in Table 2 . Table 2 Characteristics of children diagnosed with congenital heart disease at Kenyatta National Hospital Child characteristics Frequency Percentage Gender Male 70 46.7 Female 80 53.3 Birth order 1 34 22.7 2 51 34 3 32 21.3 4 33 22 Age at diagnosis 60 months 24 16.0 Presenting complaints Fast breathing 80 53.3 Cough 54 36 Fever 23 15.3 Fatigue 44 29.3 Rapid heartbeat 55 36.7 Fainting 5 3.3 Bluish colour 50 33.3 Referred to KNH Yes 129 86 No 21 14 Treatment modality Medication (n = 150) 112 74.7 Catheter procedures (n = 150) 11 7.3 Surgery (n = 150) 51 34 Types of congenital heart diseases among patients at Kenyatta National Hospital The findings revealed that 32.7% (49) had atrioventricular septal defects (AVSDs), 28.2% (44) had patent ductus arteriosus (PDA), and 10.5% (16) had atrial septal defects (ASDs), as shown in Fig. 2 . Healthcare needs of children with congenital heart disease at Kenyatta National Hospital The results revealed that 40.7% (61) of children with CHD had medical insurance and that 22.7% (34) received support from the government. Furthermore, 39.3% (59) of the children were able to perform physical activities. The findings also revealed that 67.3% (101) of the children had been admitted in the first year of life, as shown in Fig. 3 . The experiences and care needs of caregivers of children with congenital heart disease at Kenyatta National Hospital The present study also sought to investigate the experiences of caregivers and the care needs of children with congenital heart disease. Qualitative analysis was performed via thematic analysis, in which four main themes and seven subthemes were identified. The themes identified include shock and denial, psycho-social wellbeing, uncertainty about the future and coping strategies. Table 3 Themes and subthemes of caregivers of children with congenital heart disease at Kenyatta National Hospital Themes Subthemes Theme 1: Shock and denial Mixed reaction Theme 2: Psycho-social wellbeing Family support Social and healthcare provider support Theme 3: Uncertainty about future Never be the same Feeling of hope and belief Theme 4: Coping strategies Encourage family and social support Stakeholder support (Government, healthcare providers, NGOs) Theme 1: Shock and denial The participants were asked whether they knew about the condition of their child and their reactions. The participants had mixed reactions to the news about their child. Subtheme 1: Mixed reaction The majority of the participants reported mixed reactions regarding the condition of their children. Some of the participants were shocked about their child having a congenital heart disease. One of the participants asserted that “ When I was told about the condition my daughter was having, I was shocked and did not know what to do, and everything seemed standstill ” (FGD1, Participant 1). Another participant stated, “ I was shocked at first, but I came to learn about the condition of my son as time progressed, and I realized that I am not the only one ” (FGD 1, Participant 3). Some of the participants showed resilience and the will to fight after receiving news about their children. One of them stated that “ I was surprised because even though my kid has been unwell since birth, I believe that this is just a temptation from God and I will overcome ” (OP4). Another affirmed that “ The news left me shock for a moment, but I know that having a heart condition is not a death sentence and that my child will survive and raise her own children ” (IP5). Theme 2: Psychosocial wellbeing The participants were asked whether they received counselling from hospital professionals after receiving news about their child and whether they received support from spouses, family, friends and the government. Two subthemes were identified: family support and social and healthcare provider support. Subtheme 1: Family support The findings revealed varied levels of family support and involvement in the needs and well-being of the child. Some of the participants stated that their families, including spouses and siblings, have been very helpful and have played a major role in their progress. They stated, “My husband has been very supportive throughout and this has been very encouraging to all of us as family ”. (FGD1 Participant 3). Another added that “my family has been a key pillar in prayers, financial and emotional help. My child has been having successful progress, which is down to the support I get from my family ” (FGD2, Participant 6). However, few of the participants asserted that they had been neglected by family members and had not received any family support for the wellbeing of their children. One of them stated, “ Right now my child is five years old, but I have never seen his father since we knew that he had a chronic condition, he just disappeared so am all alone with no one to support me ” (FGD1, Participant 5). Subtheme 2: Social and health provider support The majority of the participants stated that healthcare providers have been supportive in taking care of their children throughout their journeys. One of the participants stated that “ Healthcare providers in this hospital (KNH) have been truly helpful; I even have contact with one of my doctors who I talk to every time I have an issue. This has been truly encouraging ” (IP1). Another stressed that “ I think that without the support of healthcare providers, I would be truly depressed and exhausted. They are always willing to listen to me and my problems” (FGD1, Participant 2). However, few of the participants also stated that some healthcare providers have not been very helpful. One of them stated that “ I know the majority are always good when I talk to them, but some of you have a very bad attitude even when someone talking to you is difficult because they never show interest at all. (IP3). Another item reported that “Some healthcare providers have a negative attitude; they do not even care that we already have a lot in our minds because taking care of a child with heart disease is not easy”. (FGD1 Participant 7). Most of the participants asserted that the government has not been helpful enough in helping care for the needs of their children, as they would have wished. They understood that their children are vulnerable and require protection from the government, especially in terms of policy formulation and the provision of financial support in care. The participants stated, “ I have never known that I need government support or that there are any organizations that help patients with this condition” (FGD1, Participant 2). Theme 3: Uncertainty about the future The participants were also asked about their thoughts about their child and whether they thought their children would lead normal lives. Almost all of the participants were unsure about the future of their children since they thought that life would never be the same and that some were feeling hope and had strong beliefs about the wellbeing of their children despite their condition. Subtheme 1: Never be the same Some of the participants stressed that their children would never recover and lead normal life. They thought that their children would always be dependent, which limits their ability to achieve anything tangible in life. One of them stated, “ My child is dependent and weak; I am not sure she can have a normal life like the rest. Additionally, I don’t have money for a heart transplant, which might improve her condition ” (FGD2, Participant 3). Subtheme 2: Feeling hope and belief Some of the participants maintained strong feelings of hope and belief that their children would lead a normal life, considering the management approaches put in place. One of the participants stated, “ I believe my child will lead a normal life; since he started medication, he has been improving and is currently enrolled in school, which is an enormous step ” (FGD1, Participant 6). Theme 4: Coping strategies The participants were also asked what can be done to help improve their well-being as they continue to provide care for children with CHD. Family support and stakeholder involvement were identified as key opportunities that can be exploited to achieve improved experiences. Subtheme 1: Family and social support The majority of the participants credited their well-being to family as being integral in their resilient attitudes and ability to provide continuous care to their children. They also asserted that continued family support would be crucial. One of them stated, “ I think that continuous family support would be vital in helping navigate through major challenges that are associated with providing care to CHD children” (FGD1, Participant 1). Subtheme 2: Stakeholder involvement The findings also established that stakeholder involvement in the care needs of CHD patients is integral in improving caregiver well-being. One of the participants asserted that “I think it would be very helpful if the government provided medical subsidies to us because the cost of care is very expensive, and regular hospital visits mean that I need to look for money as well as take my child to the hospital, which is tedious and tiresome . (FGD2 Participant 4). DISCUSSION The focus of both quantitative and qualitative approaches is to identify specific issues and elaborate them in depth, which helps in effectively understanding the underlying challenges within the local context. The demographics and needs of children with congenital heart diseases were investigated quantitatively, with the key need to identify the key need to understand the existing associations between demographics and needs. The study also aimed to assess the experiences of caregivers/parents of children with congenital heart diseases, which were appropriately explored via qualitative approaches to understand in depth the well-being of study participants while also emphasizing stressors and coping approaches as well as the existing gaps in care. Demographic and clinical characteristics of children with congenital heart disease The findings revealed that more than half of the patients with congenital heart disease were female (53%). These findings are comparable to those of a meta-analysis by Diogenes et al. (2017), which revealed that patients with CHD were 1.5 times more likely to be female 9 . Similarly, a study conducted in Brazil revealed that 51.6% of children with CHD were female 6 . However, these findings contrast with those from a study conducted in Turkey, which reported that 43.8% of the children were female 10 . The difference could be due to differences in the children with CHD enrolled in the study. In the present study, most of the children were aged less than six months, whereas the youngest child to be enrolled was six years. Another study in China by Zheng et al. (2021) reported that 59.6% of patients were male 11 . This difference could be due to the study population. Their study investigated hospital CHD mortality between 2005 and 2017; males accounted for 59.6% of the population. The present study revealed that 84.7% of CHD patients were aged less than six months. These findings are comparable to those of a study in China, which revealed that 70.8% of children presenting with congenital heart disease were aged less than one year 11 . Another study in Nigeria revealed that 70% of children were > 1 year of age 12 . Most children who present with congenital heart disease are less than one year old because many congenital heart defects are severe enough to cause symptoms or complications early in life. In some cases, these defects can even be life-threatening in infancy. Additionally, routine prenatal screening and fetal echocardiography have improved in recent years, allowing for earlier detection of congenital heart disease in utero. This means that some cases of congenital heart disease are diagnosed before a baby is born, which can lead to earlier intervention and management. This study also revealed that 53.3% of the children with congenital disease presented with fast breathing, 36% had a cough, 15.3% had a fever, and 33.3% had bluish colouration, with 3.3% presenting with fainting. These findings are in contrast with those from a study conducted in Pakistan by Mohammad et al. (2014), which revealed that common clinical presentations in children with CHD included difficulty breathing (80%), cough (53%), fever (41%), and congestive cardiac failure (19.4%) 13 . The common types of congenital heart diseases included atrioventricular septic defects (AVSDs) (32.7%), patent ductus arteriosus (PDA) (28.2%), atrial septal defects (ASDs) (10.5%) and truncus arteriosus (7.3%). Comparable findings were obtained by Mohammad et al. (2014), who reported that the majority of CHD patients (74.6%) had cyanotic heart disease 13 . Similarly, another study performed in Ghana by Thomford et al. (2020) reported that the most common cyanotic lesion was an atrioventricular septal defect (31.4%), followed by a PDA (5.9%) and an ASD (2.0%) 14 . Another study in Egypt by Al-Fahham and Ali (2021) reported comparable results: the three most common congenital heart disease types were ventricular septal defects (32.7%), atrial septal defects (21.8%), and patent ductus arteriosus (17%) 15 . The care needs of children with congenital heart disease at Kenyatta National Hospital The findings revealed that 40.7% of the children with CHD had medical insurance. Medical insurance is vital for children with chronic medical insurance to help ease the financial burden of frequent hospital visits or hospital admissions. These findings from the present study have shown that less than half of the participants had medical insurance, which points to a greater financial burden among caregivers. These findings are consistent with those of JIvanji et al. (2019) in East Africa, who reported that most caregivers of children with congenital heart disease make out-of-pocket payments during hospital visits, increasing the financial burden 16 . The findings also revealed that 22.7% of the caregivers reported receiving government financial support. This was primarily related to the NHIF, a national government initiative that helps fund the medical needs of children with CKD. Comparable findings were reported in a study in the United States, which reported that the support they received from the government was financial subsidies for the medical care of their children, resulting in 89.1% of families with a CHD child experiencing at least one financial burden 17 . The present findings also revealed that 60.7% of the children could perform some form of physical activity. This could be because most of the study participants were less than six months old and hence could perform little or no physical activity. Comparable findings were reported in a study conducted in Germany, which revealed that, among patients diagnosed with CHD, 8.8% reached the WHO-recommended 60 minutes of physical activity daily. However, in their study, the study population included children aged between 6 and 17 years 18 . Most children in the study were admitted in their first birth year (67.3%). Most CHD diagnoses are made within the first three months after delivery, which explains the greater number of admissions in the first year of birth. According to a study conducted in the United States, 34% of children are diagnosed during the prenatal period, which allows for better management 19 . The experiences and care needs of caregivers of children with congenital heart disease The findings showed that most caregivers were in shock and denial after being diagnosed with their children having congenital heart disease. Comparable findings were obtained in a study conducted in Ethiopia by Choi et al., who reported that most caregivers of children with CHD found it difficult to accept. Many of them highlighted that they waited for a long time to have the diagnosis, which increased their level of anxiety 20 . Similarly, another study in Iran reported that most caregivers isolated themselves after learning that their children had been diagnosed with congenital heart disease. Some parents receive news of their child's condition with sadness 21 . The findings also showed that most of the caregivers highlighted that they received immense support from their family members and healthcare providers. Family and healthcare providers are primarily involved in caring for children with CHD. These findings were in line with those from a study performed in Italy by Simeone et al., which revealed that family members were supportive after discharge, especially considering that there was an increased workload and need to provide care to their needs 22 . Furthermore, a study in Iran revealed that healthcare providers are crucial in offering psychological support, which is integral to the well-being of their children 21 . The findings also revealed that most caregivers were uncertain about their future and the well-being of their children. Consistent findings were obtained from a meta-analysis conducted by Dellafiore, which revealed that fear and uncertainty of the future was a major challenge for the caregivers of children with CHD 23 . The present findings established that 68% of the patients had depression, with 40% reporting severe depression. These findings are consistent with those of a study performed by Kihiu et al. (2020), which reported that the prevalence of depression among caregivers of children with CHD was 54%. However, the findings of the present study contrast with those of a study in the United States by Awaad and Darahim (2015), who reported that the prevalence of depression among caregivers of children with CHD was 32.2% 24 . The difference could be attributed to the increased quality of care for patients with chronic illness in the United States, including financial support, which is a major challenge for the well-being of children with CHD. The present findings also revealed that 72.7% of the caregivers had high to moderate burnout levels. Consistent findings were obtained by Ahmadi et al., who reported that 62.3% of caregivers had burnout, with 47.9% experiencing emotional exhaustion 25 . Caregiving for a child with congenital heart disease can be emotionally and physically demanding, leading to high stress levels and burnout among caregivers. Caregiving can be isolated, especially if the caregiver does not have a strong support network. This can lead to feelings of loneliness and frustration 26 . In conclusion, the findings emphasize the significant emotional and physical challenges faced by both children with congenital heart disease (CHD) and their caregivers. The high prevalence of symptoms and the emotional burden of caregivers underscore the need for early diagnosis, especially during the prenatal period, to reduce the shock and denial that caregivers experience. Furthermore, providing comprehensive mental health support for caregivers is crucial for addressing the psychological toll of caring for children with CHD. Strengthening healthcare systems to ensure early intervention, financial support, and access to physical activities for these children could enhance both their well-being and that of their caregivers. Declarations Conflict of interest There are no conflicts of interest to declare. Ethical consideration Ethical considerations were considered in this study in accordance with the Declaration of Helsinki. Ethical approval was obtained from the Kenyatta National Hospital and University of Nairobi (KNH-UoN ERC) Ethics and Review Committee. Clinical trial number Not applicable Corresponding authors Telephone: +254 741 115984; Email: [email protected] Funding This study was self-sponsored Author Contribution MA, OO and RN conceptualized the idea and design of the work, MA developed the study, OO and RN reviewed and approved the work, MA analyzed and interpreted the data; MA developed the Manuscript; OO and MA reviewed and approved the drafted work. Data Availability Research data is available for access upon request References Beaton A, Kamalembo FB, Dale J et al. The American Heart Association’s Call to Action for Reducing the Global Burden of Rheumatic Heart Disease: A Policy Statement From the American Heart Association. Circulation . 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Brazilian J Cardiovasc Surg. Published online 2016. 10.5935/1678-9741.20160001 Ogeng’o JA, Gatonga PM, Olabu BO, Nyamweya DK, Ong’era D. Pattern of congestive heart failure in a Kenyan paediatric population. Cardiovascular J Africa Published online. 2013. 10.5830/CVJA-2013-015 . A RC, O SK. J.A. M. The pattern and challenges of anticoagulation in a resource-constrained setting in Nigeria. J Clin Pharmacol. Published online 2011. Diogenes TCP, Mourato FA, de Lima Filho JL, Mattos S. da S. Gender differences in the prevalence of congenital heart disease in Down’s syndrome: A brief meta-analysis. BMC Medical Genetics . Published online 2017. 10.1186/s12881-017-0475-7 Sertçelik T, Alkan F, Yalın Sapmaz Ş, Coşkun Ş, Eser E. Life quality of children with congenital heart diseases. Turk Pediatri Arsivi . Published online. 2018. 10.5152/TurkPediatriArs.2018.6428 Zheng G, Wu J, Chen P et al. Characteristics of in-hospital mortality of congenital heart disease (CHD) after surgical treatment in children from 2005 to 2017: a single-center experience. BMC Pediatr. Published online 2021. 10.1186/s12887-021-02935-2 Animasahun BA, Adekunle MO, Kusimo OY. Time to diagnosis, socioeconomic and clinical features of patients with congenital heart diseases in a teaching hospital in Nigeria. Journal of Public Health and Emergency . Published online. 2018. 10.21037/jphe.2018.04.01 Mohammad N, Shaikh S, Memon S, Das H. Spectrum of heart disease in children under 5 years of age at Liaquat University Hospital, Hyderabad, Pakistan. Indian Heart Journal Published online. 2014. 10.1016/j.ihj.2013.12.041 . Thomford NE, Biney RP, Okai E et al. Clinical Spectrum of congenital heart defects (CHD) detected at the child health Clinic in a Tertiary Health Facility in Ghana: a retrospective analysis. J Congenital Cardiol. Published online 2020. 10.1186/s40949-020-00034-y Al-Fahham MM, Ali YA. Pattern of congenital heart disease among Egyptian children: a 3-year retrospective study. Egypt Heart J. Published online 2021. 10.1186/s43044-021-00133-0 Jivanji SG, Qureshi SA, Reel B, Lubega S. Congenital heart disease in East Africa. Frontiers in Pediatrics . Published online 2019. 10.3389/fped.2019.00250 McClung N, Glidewell J, Farr SL. Financial burdens and mental health needs in families of children with congenital heart disease. Congenital Heart Disease . Published online. 2018. 10.1111/chd.12605 Siaplaouras J, Niessner C, Helm PC, et al. Physical Activity Among Children With Congenital Heart Defects in Germany: A Nationwide Survey. Frontiers Pediatrics Published online. 2020. 10.3389/fped.2020.00170 . Odom TL, Zheng Y, Kattan G, et al. Recognition of congenital heart disease in subsequent hospital visits among children with a prenatal diagnosis. Prog Pediatr Cardiol. 2022;65:101490. 10.1016/J.PPEDCARD.2022.101490 . Choi S, Shin H, Heo J et al. How do caregivers of children with congenital heart diseases access and navigate the healthcare system in Ethiopia? BMC Health Serv Res. Published online 2021. 10.1186/s12913-021-06083-2 Nayeri ND, Roddehghan Z, Mahmoodi F, Mahmoodi P. Being parent of a child with congenital heart disease, what does it mean? A qualitative research. BMC Psychol. Published online 2021. 10.1186/s40359-021-00539-0 Simeone S, Platone N, Perrone M et al. The lived experience of parents whose children discharged to home after cardiac surgery for congenital heart disease. Acta Biomed. Published online 2018. 10.23750/abm.v89i4-S.7223 Dellafiore F. The life experience of parents of Congenital Heart Disease adolescents: A meta-synthesis. Archives Nurs Pract Care. Published online 2017. 10.17352/anpc.000022 Awaad MI, Darahim KE. Anxiety and depression in the caregivers of children with congenital heart disease: Prevalence and predictors. Middle East Current Psychiatry . Published online 2015. 10.1097/01.XME.0000471465.50470.5f Ahmadi B, Sabery M, Adib-Hajbaghery M. Burnout in the Primary Caregivers of Children With Chronic Conditions and its Related Factors. Journal of Client-centered Nursing Care . Published online 2021. 10.32598/jccnc.7.2.360.1 Khajali Z, Saedi S. Congenital Heart Disease. In: Practical Cardiology: Principles and Approaches .; 2022. 10.1016/B978-0-323-80915-3.00014-4 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-6905975","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":481929722,"identity":"79cb4ae2-301f-402d-b6a9-19a4223fd9d9","order_by":0,"name":"Mahad Abdirahman","email":"data:image/png;base64,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","orcid":"","institution":"University of Nairobi","correspondingAuthor":true,"prefix":"","firstName":"Mahad","middleName":"","lastName":"Abdirahman","suffix":""},{"id":481929723,"identity":"82b60859-5c3d-4261-ba03-57ca261eae53","order_by":1,"name":"Ombaba Osano","email":"","orcid":"","institution":"University of Nairobi","correspondingAuthor":false,"prefix":"","firstName":"Ombaba","middleName":"","lastName":"Osano","suffix":""},{"id":481929724,"identity":"d2d0c5cc-7b36-4e27-9939-f92129bfc8dd","order_by":2,"name":"Ruth Nduati","email":"","orcid":"","institution":"Professor of Perinatal and Neonatal Medicine, University of Nairobi","correspondingAuthor":false,"prefix":"","firstName":"Ruth","middleName":"","lastName":"Nduati","suffix":""}],"badges":[],"createdAt":"2025-06-16 13:23:13","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-6905975/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6905975/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":86628222,"identity":"3da5d055-0020-4b43-8008-3e1fcd27114f","added_by":"auto","created_at":"2025-07-14 05:43:30","extension":"jpg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":223248,"visible":true,"origin":"","legend":"\u003cp\u003eTypes of congenital heart diseases among patients at Kenyatta National Hospital\u003c/p\u003e","description":"","filename":"Picture1.jpg","url":"https://assets-eu.researchsquare.com/files/rs-6905975/v1/54c951e7f63a98b6b08367e1.jpg"},{"id":86628221,"identity":"fe92bbe0-fea5-41d0-b298-3c02c80e7202","added_by":"auto","created_at":"2025-07-14 05:43:30","extension":"jpg","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":27426,"visible":true,"origin":"","legend":"\u003cp\u003eHealthcare needs of children with congenital heart disease at Kenyatta National Hospital\u003c/p\u003e","description":"","filename":"Picture2.jpg","url":"https://assets-eu.researchsquare.com/files/rs-6905975/v1/2da412a02034de550586e5d7.jpg"},{"id":86629777,"identity":"0fe4eaf5-3a81-4c09-951f-7f75c1d4085b","added_by":"auto","created_at":"2025-07-14 06:08:05","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1658215,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6905975/v1/3bf54758-acf8-4c23-80d6-5af4efe0fd64.pdf"},{"id":86629757,"identity":"2f27c496-566c-43bb-9372-b7c0946a66e0","added_by":"auto","created_at":"2025-07-14 06:07:55","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":137198,"visible":true,"origin":"","legend":"","description":"","filename":"Studydatacollectiontools.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6905975/v1/20e99426e87d82bed2ab1853.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Experiences of Caregivers and Care Needs of Children with Congenital Heart Disease at Kenyatta National Hospital","fulltext":[{"header":"INTRODUCTION","content":"\u003cp\u003eCongenital heart defects are structural or functional heart problems caused by defects or abnormalities that exist at birth and affect approximately 8\u0026ndash;12 of every 1,000 live births, accounting for two-thirds of all major birth defects \u003csup\u003e\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u003c/sup\u003e. Globally, the reported prevalence of CHD births has increased over time, from 0.6 per 1,000 live births in the 1930s to 9.1 per 1,000 live births\u003csup\u003e\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e\u003cp\u003eThe development of safe diagnostic imaging, especially nonionizing techniques such as 3D echocardiography, and the implementation of nationwide programs for prenatal neonatal screening are some of the plausible reasons for the apparent increase in the prevalence of CHD. For example, in the United States, which is one of the most technologically advanced nations, CHD is the most common type of birth defect \u003csup\u003e\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e\u003c/sup\u003e. Owing to a lack of screening and diagnosing problems rather than the absence of defects, the prevalence of CHD in many other parts of the world remains unknown. According to the Kenya Ministry of Health, approximately 200,000 children under the age of 18 have heart disease, and over 10,000 babies are born with CHD each year.\u003c/p\u003e\u003cp\u003eAdvances in the implementation of high-impact child survival strategies, which include childhood immunization, breastfeeding and care of critically ill children, are driving an epidemiological transition from infectious diseases as the leading cause of morbidity and mortality and the emergence of noncommunicable diseases, and CHD is one of them \u003csup\u003e\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e\u003c/sup\u003e. Changes in medical and surgical techniques have led CHD to be considered a major paediatric illness. The case fatality associated with this condition is approximately 3\u0026ndash;7 percent in developed settings, whereas in developing countries, the rate is significantly at approximately 20 percent \u003csup\u003e\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e\u003c/sup\u003e. The common symptom among children with congenital heart disease is developmental delay, which is present in approximately 87% of these children \u003csup\u003e\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e\u003cp\u003eCaring for a child with a chronic illness involves many challenges that affect the well-being of the carer. Parents of children with CHD are faced with the uncertainty of their children living past adulthood, including different challenges such as regular medical appointments to review the wellbeing of their children \u003csup\u003e\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e\u003c/sup\u003e. Providing medical and emotional care for their newborn child is typically a difficult challenge for the family unit. Furthermore, these parents face increased financial insecurity as a result of unemployment, sick leave, and medical costs associated with caring for their children, all of which contribute to a lower standard of living \u003csup\u003e\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e\u003cp\u003eThe government of Kenya has put in place strategic social protection measures that have focused on improving the needs and well-being of all children, including those with chronic diseases such as CHD. To be effective, the services need to be responsive to the actual needs. There is limited information on caregiver experiences when caring for the well-being of children with CHD and their social and health needs \u003csup\u003e\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e\u003c/sup\u003e. The KNH provides only dedicated paediatric cardiology services in the public sector. The patients who utilize these services are from all over Kenya. Understanding the needs of families of children with chronic illness, especially a condition such as CHD, which requires timely intervention to prevent severe morbidity, would enable health services to offer appropriate multidisciplinary services. Past studies have shown that parents/caregivers of children with congenital heart disease have stressful experiences that are hopeful, hopeless and uncertain with respect to the future. In the local context, the needs and well-being of caregivers of children with congenital heart diseases have not been explored. This study seeks to describe the experiences of caregivers and the needs of children with congenital heart disease at Kenyatta National Hospital.\u003c/p\u003e"},{"header":"METHODS AND MATERIALS","content":"\u003cp\u003e\u003cb\u003eStudy design\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThis study utilized a cross-sectional study design utilizing quantitative and quantitative techniques.\u003c/p\u003e\u003cp\u003e\u003cb\u003eStudy setting\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe study was conducted at the Kenyatta National Hospital Pediatric Unit, both outpatient and inpatient. Kenyatta National Hospital is the largest referral hospital in East and Central Africa, with a bed capacity of approximately 2,000. The hospital is located 5 km from the Nairobi Central Business Unit. The hospital complex houses Kenya Medical training college and the University of Nairobi College of Health Sciences. The hospital caters to approximately 30,000 pediatric inpatients each year. Pediatric patients with congestive heart failure are managed in pediatric wards. The children are usually admitted together with their parents or guardians. They are then discharged through the pediatric outpatient cardiology clinic.\u003c/p\u003e\u003cp\u003e\u003cb\u003eStudy population\u003c/b\u003e\u003c/p\u003e\u003cp\u003eCaregivers of children aged 12 years and younger who were diagnosed with congenital heart disease at Kenyatta National Hospital and who provided informed consent were recruited. Caregivers/parents of children aged less than or equal to 12 years who were diagnosed with congenital heart disease and who declined to provide consent were excluded.\u003c/p\u003e\u003cp\u003e\u003cb\u003eSample size determination\u003c/b\u003e\u003c/p\u003e\u003cp\u003e A sample size of 150 caregivers was included in the quantitative arm of the study via Fischer\u0026rsquo;s formula.\u003c/p\u003e\u003cp\u003eThe study included two focus group discussions (FGDs). The outpatient focus group discussion (FGD1) included seven participants, whereas the inpatient focus group discussion (FGD2) included six participants. A focus group including 6\u0026ndash;8 participants is appropriate considering that it is easy to manage and that participants can interact freely to provide honest responses. This was essential in identifying challenges and coping strategies that they have put in place to help improve the well-being of their children.\u003c/p\u003e\u003cp\u003e\u003cb\u003eSampling technique\u003c/b\u003e\u003c/p\u003e\u003cp\u003eA consecutive sampling technique was used. The caregivers of children with CHD were sampled consecutively into the quantitative arm of the study until the sample size was reached.\u003c/p\u003e\u003cp\u003eA purposive sampling method was used to identify the study. Eligible participants were invited to participate in the study. Purposive sampling is a nonprobability sampling method in which subjects are chosen on the basis of population characteristics and the aims of the study.\u003c/p\u003e\u003cp\u003e\u003cb\u003eData collection procedure\u003c/b\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eQuantitative data collection\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe data collection process began after approval from the KNH-UoN ERC and Kenyatta National Hospital administration.\u003c/p\u003e\u003cp\u003eFor the quantitative evaluation, at the outpatient clinic, the principal recruited the first caregiver who met the inclusion criteria and provided consent as the starting point. Other respondents were selected each clinic day consecutively until the sample size was reached. In the pediatric wards, the principal investigator recruited caregivers who met the inclusion criteria consecutively.\u003c/p\u003e\u003cp\u003eFor the qualitative arm, the participants were assessed to ensure that they did not participate in the quantitative data collection process. The researcher recruited focus group participants from the population that did not participate in the questionnaire. The participants provided their contacts to the researcher, who agreed to participate in the focus group discussions at a later date to be communicated. The FGDs were moderated by the researcher, and a note-taker was used to document the proceedings of the session. The session was audiotaped and transcribed verbatim to derive meaning. A focus group discussion guide was used to assess challenges and mitigation strategies that caregivers are putting in place to improve their well-being and reduce the burden.\u003c/p\u003e\u003cp\u003eThe data collection tools used in this study were developed from the literature for the purpose of this study. (Attached supplementary file)\u003c/p\u003e\u003cp\u003e\u003cb\u003eStudy variables\u003c/b\u003e\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eIndependent variables\u003c/strong\u003e\u003cp\u003eCaregiver characteristics (age, marital status, level of education, employment status, monthly average income, residence) and child characteristics (age, time since diagnosis, treatment, surgery conducted, education, insurance, and enrollment in the social protection program).\u003c/p\u003e\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eDependent variable\u003c/strong\u003e\u003cp\u003eExperiences of caregivers (positive, negative, mixed)\u003c/p\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eData quality control\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe data collection tool was completed by a trained research assistant under the guidance and supervision of the principal investigator to obtain demographic and clinical data. The research assistants who were recruited had a minimum diploma in the nursing qualification and were therefore knowledgeable. Additionally, the research assistants were trained for two days to ensure that they were well conversant with the research tool and ethical research practices. The researcher led the data collection procedure and continuously monitored the research assistants to ensure that they collected quality data. To avoid duplicate findings, the questionnaires were assigned serial numbers. Following collection, the data were reviewed on a weekly basis to ensure completeness. Continuous data were entered into a password-protected Epi data database. The Principal Investigator recruited a qualified statistician who assessed, cleaned and analysed the data to achieve the intended goals.\u003c/p\u003e\u003cdiv id=\"Sec2\" class=\"Section2\"\u003e\u003ch2\u003eData analysis\u003c/h2\u003e\u003cp\u003e\u003cstrong\u003eQuantitative data analysis\u003c/strong\u003e\u003cp\u003eData cleaning and analysis were performed via Stata version 17. Descriptive statistics were used to analyse the sociodemographic and clinical characteristics of the patients and are presented as frequencies and percentages for categorical data and as the means with standard deviations for continuous data. Binary logistic regression was used to investigate the associations among caregiver and child characteristics and depression. The level of significance was assessed at p\u0026thinsp;\u0026lt;\u0026thinsp;0.05.\u003c/p\u003e\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eQualitative data analysis\u003c/strong\u003e\u003cp\u003eThe researcher familiarized himself with the data through review of the transcripts and the notes written during data collection. The original recordings were transcribed verbatim by a trained and qualified transcriber together with the researcher. Independent transcription was performed by the researcher to verify the consistency of the data in the transcripts as one of the verification processes to enhance trustworthiness. Different categories were identified and assigned codes to describe the content. As an analytic strategy, content analysis of the data was performed inductively through a line-by-line manual coding process. This was done to identify themes on the basis of the underlying study objectives. Dedoose version 9 software was used for data analysis.\u003c/p\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eEthical consideration\u003c/b\u003e\u003c/p\u003e\u003cp\u003eEthical approval was obtained from Kenyatta National Hospital and the University of Nairobi (KNH-UoN ERC) reference number: P250/03/2022. This study was performed in accordance with the Declaration of Helsinki.\u003c/p\u003e\u003c/p\u003e\u003c/div\u003e"},{"header":"RESULTS","content":"\u003cp\u003eThis study sought to explore the experiences of caregivers and the needs of children with congenital heart disease at Kenyatta National Hospital. A total of 150 caregivers were recruited to participate in the study. All 150 questionnaires were returned for analysis.\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eCharacteristics of caregivers of children with congenital heart disease at Kenyatta National Hospital\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe results revealed that 79.3% (119) of the participants were female, and 61.3% (92) were aged 30 years and above. In terms of residence, 56.7% (85) of the respondents resided in rural settings. Furthermore, 40.7% (61) had a secondary level of education, 64% (96) were unemployed, and 36% (54) had an average monthly income of less than Ksh.10,000. In addition, 53.3% (80) of the respondents had three or more children. The presence of underlying conditions revealed that 10.7% (16) of the participants had underlying conditions, including hypertension and diabetes mellitus. The findings also revealed that 78% (n\u0026thinsp;=\u0026thinsp;117) had vaginal delivery, as shown in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\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\u003eCharacteristics of caregivers of children with congenital heart disease at Kenyatta National Hospital\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"3\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eCaregiver characteristics\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eFrequency\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003ePercent\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eGender\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e31\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e20.7\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eFemale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e119\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e79.3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eMarital status\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSingle\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e63\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e42.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMarried\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e87\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e58.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eAge\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u0026lt;\u0026thinsp;30 years\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e58\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e38.7\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e30 years and above\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e92\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e61.3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eResidence\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eUrban\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e65\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e43.3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eRural\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e85\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e56.7\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eEducation level\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNo formal education\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2.7\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePrimary level\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e46\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e30.7\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSecondary level\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e61\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e40.7\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTertiary level\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e39\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e26.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eEmployment status\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eEmployed\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e54\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e36.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eUnemployed\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e96\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e64.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eAverage monthly income\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eLess than Ksh,10,000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e93\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e62.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eKsh.10,000\u0026ndash;20,000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e33\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e22.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u0026gt;\u0026thinsp;20,000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e24\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e16.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eNumber of children\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u0026lt;\u0026thinsp;3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e70\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e46.7\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e3 and above\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e80\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e53.3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003ePresence of underlying conditions\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eYes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e16\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e10.7\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e134\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e89.3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eComorbidities (n\u0026thinsp;=\u0026thinsp;16)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eHypertension\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e37.5\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eDiabetes mellitus\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e25\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eBoth hypertension and Diabetes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e31.3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003ePlace of delivery\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eKNH\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e16\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e10.7\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eHome\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e4.7\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eOther health facility\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e127\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e84.7\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eMode of delivery\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eVaginal delivery\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e117\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e78.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eCaesarean section\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e33\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e22.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eCharacteristics of children diagnosed with congenital heart disease at Kenyatta National Hospital\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe findings revealed that 53.3% (80) of the patients were female. In terms of birth order, 34% (51) were second-born children. Age at diagnosis revealed that 84.7% (127) of the patients were diagnosed with CHD when they were less than six months of life. The common presenting symptoms identified included fast breathing (53.3%, 80%), rapid heartbeat (36.7%, 55%), coughing (36%, 54%) and bluish color (33.3%, 50%). The majority of the patients, 86% (129), were referred to KNH. In terms of treatment modality, 74.7% (112) were on medication, whereas 34% (51) had surgery, as shown in Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eCharacteristics of children diagnosed with congenital heart disease at Kenyatta National Hospital\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"3\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eChild characteristics\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eFrequency\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003ePercentage\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eGender\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e70\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e46.7\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eFemale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e80\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e53.3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eBirth order\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e34\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e22.7\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e51\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e34\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e32\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e21.3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e33\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e22\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eAge at diagnosis\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u0026lt;\u0026thinsp;6 months\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e85\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e56.7\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e6\u0026ndash;12 months\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2.7\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e13\u0026ndash;36 months\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e6.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e37\u0026ndash;60 months\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e28\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e18.7\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u0026gt;\u0026thinsp;60 months\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e24\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e16.0\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003ePresenting complaints\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eFast breathing\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e80\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e53.3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eCough\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e54\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e36\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eFever\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e23\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e15.3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eFatigue\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e44\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e29.3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eRapid heartbeat\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e55\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e36.7\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eFainting\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3.3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eBluish colour\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e50\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e33.3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eReferred to KNH\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eYes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e129\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e86\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e21\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e14\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eTreatment modality\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMedication (n\u0026thinsp;=\u0026thinsp;150)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e112\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e74.7\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eCatheter procedures (n\u0026thinsp;=\u0026thinsp;150)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e11\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e7.3\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSurgery\u0026nbsp;(n\u0026thinsp;=\u0026thinsp;150)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e\u003cp\u003e51\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e34\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eTypes of congenital heart diseases among patients at Kenyatta National Hospital\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe findings revealed that 32.7% (49) had atrioventricular septal defects (AVSDs), 28.2% (44) had patent ductus arteriosus (PDA), and 10.5% (16) had atrial septal defects (ASDs), as shown in Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e2\u003c/span\u003e.\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eHealthcare needs of children with congenital heart disease at Kenyatta National Hospital\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe results revealed that 40.7% (61) of children with CHD had medical insurance and that 22.7% (34) received support from the government. Furthermore, 39.3% (59) of the children were able to perform physical activities. The findings also revealed that 67.3% (101) of the children had been admitted in the first year of life, as shown in Fig.\u0026nbsp;\u003cspan refid=\"Fig2\" class=\"InternalRef\"\u003e3\u003c/span\u003e.\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eThe experiences and care needs of caregivers of children with congenital heart disease at Kenyatta National Hospital\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe present study also sought to investigate the experiences of caregivers and the care needs of children with congenital heart disease. Qualitative analysis was performed via thematic analysis, in which four main themes and seven subthemes were identified. The themes identified include shock and denial, psycho-social wellbeing, uncertainty about the future and coping strategies.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eThemes and subthemes of caregivers of children with congenital heart disease at Kenyatta National Hospital\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\"\u003e\u003cp\u003eTheme 1: Shock and denial\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eMixed reaction\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTheme 2: Psycho-social wellbeing\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eFamily support\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eSocial and healthcare provider support\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTheme 3: Uncertainty about future\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eNever be the same\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eFeeling of hope and belief\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTheme 4: Coping strategies\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eEncourage family and social support\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eStakeholder support (Government, healthcare providers, NGOs)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eTheme 1: Shock and denial\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe participants were asked whether they knew about the condition of their child and their reactions. The participants had mixed reactions to the news about their child.\u003c/p\u003e\u003cp\u003e\u003cb\u003eSubtheme 1: Mixed reaction\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe majority of the participants reported mixed reactions regarding the condition of their children. Some of the participants were shocked about their child having a congenital heart disease. One of the participants asserted that \u0026ldquo;\u003cem\u003eWhen I was told about the condition my daughter was having, I was shocked and did not know what to do, and everything seemed standstill\u003c/em\u003e\u0026rdquo; (FGD1, Participant 1). Another participant stated, \u0026ldquo;\u003cem\u003eI was shocked at first, but I came to learn about the condition of my son as time progressed, and I realized that I am not the only one\u003c/em\u003e\u0026rdquo; (FGD 1, Participant 3).\u003c/p\u003e\u003cp\u003eSome of the participants showed resilience and the will to fight after receiving news about their children. One of them stated that \u0026ldquo;\u003cem\u003eI was surprised because even though my kid has been unwell since birth, I believe that this is just a temptation from God and I will overcome\u003c/em\u003e\u0026rdquo; (OP4). Another affirmed that \u0026ldquo;\u003cem\u003eThe news left me shock for a moment, but I know that having a heart condition is not a death sentence and that my child will survive and raise her own children\u003c/em\u003e\u0026rdquo; (IP5).\u003c/p\u003e\u003cp\u003e\u003cb\u003eTheme 2: Psychosocial wellbeing\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe participants were asked whether they received counselling from hospital professionals after receiving news about their child and whether they received support from spouses, family, friends and the government. Two subthemes were identified: family support and social and healthcare provider support.\u003c/p\u003e\u003cp\u003e\u003cb\u003eSubtheme 1: Family support\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe findings revealed varied levels of family support and involvement in the needs and well-being of the child. Some of the participants stated that their families, including spouses and siblings, have been very helpful and have played a major role in their progress. They stated, \u0026ldquo;My \u003cem\u003ehusband has been very supportive throughout and this has been very encouraging to all of us as family\u003c/em\u003e\u0026rdquo;. (FGD1 Participant 3). Another added that \u0026ldquo;my \u003cem\u003efamily has been a key pillar in prayers, financial and emotional help. My child has been having successful progress, which is down to the support I get from my family\u003c/em\u003e\u0026rdquo; (FGD2, Participant 6).\u003c/p\u003e\u003cp\u003e However, few of the participants asserted that they had been neglected by family members and had not received any family support for the wellbeing of their children. One of them stated, \u0026ldquo;\u003cem\u003eRight now my child is five years old, but I have never seen his father since we knew that he had a chronic condition, he just disappeared so am all alone with no one to support me\u003c/em\u003e\u0026rdquo; (FGD1, Participant 5).\u003c/p\u003e\u003cp\u003e\u003cb\u003eSubtheme 2: Social and health provider support\u003c/b\u003e\u003c/p\u003e\u003cp\u003e The majority of the participants stated that healthcare providers have been supportive in taking care of their children throughout their journeys. One of the participants stated that \u0026ldquo;\u003cem\u003eHealthcare providers in this hospital (KNH) have been truly helpful; I even have contact with one of my doctors who I talk to every time I have an issue. This has been truly encouraging\u003c/em\u003e\u0026rdquo; (IP1). Another stressed that \u0026ldquo;\u003cem\u003eI think that without the support of healthcare providers, I would be truly depressed and exhausted. They are always willing to listen to me and my\u003c/em\u003e problems\u0026rdquo; (FGD1, Participant 2).\u003c/p\u003e\u003cp\u003eHowever, few of the participants also stated that some healthcare providers have not been very helpful. One of them stated that \u0026ldquo;\u003cem\u003eI know the majority are always good when I talk to them, but some of you have a very bad attitude even when someone talking to you is difficult because they never show interest at all.\u003c/em\u003e (IP3). Another item reported that \u0026ldquo;Some healthcare providers have a negative attitude; they do not even care that we already have a lot in our minds because taking care of a child with heart disease is not easy\u0026rdquo;. (FGD1 Participant 7).\u003c/p\u003e\u003cp\u003eMost of the participants asserted that the government has not been helpful enough in helping care for the needs of their children, as they would have wished. They understood that their children are vulnerable and require protection from the government, especially in terms of policy formulation and the provision of financial support in care. The participants stated, \u0026ldquo;\u003cem\u003eI have never known that I need government support or that there are any organizations that help patients with this\u003c/em\u003e condition\u0026rdquo; (FGD1, Participant 2).\u003c/p\u003e\u003cp\u003e\u003cb\u003eTheme 3: Uncertainty about the future\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe participants were also asked about their thoughts about their child and whether they thought their children would lead normal lives. Almost all of the participants were unsure about the future of their children since they thought that life would never be the same and that some were feeling hope and had strong beliefs about the wellbeing of their children despite their condition.\u003c/p\u003e\u003cp\u003e\u003cb\u003eSubtheme 1: Never be the same\u003c/b\u003e\u003c/p\u003e\u003cp\u003e Some of the participants stressed that their children would never recover and lead normal life. They thought that their children would always be dependent, which limits their ability to achieve anything tangible in life. One of them stated, \u0026ldquo;\u003cem\u003eMy child is dependent and weak; I am not sure she can have a normal life like the rest. Additionally, I don\u0026rsquo;t have money for a heart transplant, which might improve her condition\u003c/em\u003e\u0026rdquo; (FGD2, Participant 3).\u003c/p\u003e\u003cp\u003e\u003cb\u003eSubtheme 2: Feeling hope and belief\u003c/b\u003e\u003c/p\u003e\u003cp\u003eSome of the participants maintained strong feelings of hope and belief that their children would lead a normal life, considering the management approaches put in place. One of the participants stated, \u0026ldquo;\u003cem\u003eI believe my child will lead a normal life; since he started medication, he has been improving and is currently enrolled in school, which is an enormous step\u003c/em\u003e\u0026rdquo; (FGD1, Participant 6).\u003c/p\u003e\u003cp\u003e\u003cb\u003eTheme 4: Coping strategies\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe participants were also asked what can be done to help improve their well-being as they continue to provide care for children with CHD. Family support and stakeholder involvement were identified as key opportunities that can be exploited to achieve improved experiences.\u003c/p\u003e\u003cp\u003e\u003cb\u003eSubtheme 1: Family and social support\u003c/b\u003e\u003c/p\u003e\u003cp\u003e The majority of the participants credited their well-being to family as being integral in their resilient attitudes and ability to provide continuous care to their children. They also asserted that continued family support would be crucial. One of them stated, \u0026ldquo;\u003cem\u003eI think that continuous family support would be vital in helping navigate through major challenges that are associated with providing care to CHD\u003c/em\u003e children\u0026rdquo; (FGD1, Participant 1).\u003c/p\u003e\u003cp\u003e\u003cb\u003eSubtheme 2: Stakeholder involvement\u003c/b\u003e\u003c/p\u003e\u003cp\u003e The findings also established that stakeholder involvement in the care needs of CHD patients is integral in improving caregiver well-being. One of the participants asserted that \u0026ldquo;I \u003cem\u003ethink it would be very helpful if the government provided medical subsidies to us because the cost of care is very expensive, and regular hospital visits mean that I need to look for money as well as take my child to the hospital, which is tedious and tiresome\u003c/em\u003e. (FGD2 Participant 4).\u003c/p\u003e"},{"header":"DISCUSSION","content":"\u003cp\u003eThe focus of both quantitative and qualitative approaches is to identify specific issues and elaborate them in depth, which helps in effectively understanding the underlying challenges within the local context. The demographics and needs of children with congenital heart diseases were investigated quantitatively, with the key need to identify the key need to understand the existing associations between demographics and needs. The study also aimed to assess the experiences of caregivers/parents of children with congenital heart diseases, which were appropriately explored via qualitative approaches to understand in depth the well-being of study participants while also emphasizing stressors and coping approaches as well as the existing gaps in care.\u003c/p\u003e\u003cp\u003e\u003cb\u003eDemographic and clinical characteristics of children with congenital heart disease\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe findings revealed that more than half of the patients with congenital heart disease were female (53%). These findings are comparable to those of a meta-analysis by Diogenes et al. (2017), which revealed that patients with CHD were 1.5 times more likely to be female \u003csup\u003e\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e\u003c/sup\u003e. Similarly, a study conducted in Brazil revealed that 51.6% of children with CHD were female \u003csup\u003e\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u003c/sup\u003e. However, these findings contrast with those from a study conducted in Turkey, which reported that 43.8% of the children were female \u003csup\u003e\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e\u003c/sup\u003e. The difference could be due to differences in the children with CHD enrolled in the study. In the present study, most of the children were aged less than six months, whereas the youngest child to be enrolled was six years. Another study in China by Zheng et al. (2021) reported that 59.6% of patients were male \u003csup\u003e\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u003c/sup\u003e. This difference could be due to the study population. Their study investigated hospital CHD mortality between 2005 and 2017; males accounted for 59.6% of the population.\u003c/p\u003e\u003cp\u003eThe present study revealed that 84.7% of CHD patients were aged less than six months. These findings are comparable to those of a study in China, which revealed that 70.8% of children presenting with congenital heart disease were aged less than one year \u003csup\u003e\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u003c/sup\u003e. Another study in Nigeria revealed that 70% of children were \u0026gt;\u0026thinsp;1 year of age \u003csup\u003e\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u003c/sup\u003e. Most children who present with congenital heart disease are less than one year old because many congenital heart defects are severe enough to cause symptoms or complications early in life. In some cases, these defects can even be life-threatening in infancy. Additionally, routine prenatal screening and fetal echocardiography have improved in recent years, allowing for earlier detection of congenital heart disease in utero. This means that some cases of congenital heart disease are diagnosed before a baby is born, which can lead to earlier intervention and management.\u003c/p\u003e\u003cp\u003eThis study also revealed that 53.3% of the children with congenital disease presented with fast breathing, 36% had a cough, 15.3% had a fever, and 33.3% had bluish colouration, with 3.3% presenting with fainting. These findings are in contrast with those from a study conducted in Pakistan by Mohammad et al. (2014), which revealed that common clinical presentations in children with CHD included difficulty breathing (80%), cough (53%), fever (41%), and congestive cardiac failure (19.4%) \u003csup\u003e\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e\u003cp\u003eThe common types of congenital heart diseases included atrioventricular septic defects (AVSDs) (32.7%), patent ductus arteriosus (PDA) (28.2%), atrial septal defects (ASDs) (10.5%) and truncus arteriosus (7.3%). Comparable findings were obtained by Mohammad et al. (2014), who reported that the majority of CHD patients (74.6%) had cyanotic heart disease \u003csup\u003e\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e\u003c/sup\u003e. Similarly, another study performed in Ghana by Thomford et al. (2020) reported that the most common cyanotic lesion was an atrioventricular septal defect (31.4%), followed by a PDA (5.9%) and an ASD (2.0%) \u003csup\u003e\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e\u003c/sup\u003e. Another study in Egypt by Al-Fahham and Ali (2021) reported comparable results: the three most common congenital heart disease types were ventricular septal defects (32.7%), atrial septal defects (21.8%), and patent ductus arteriosus (17%) \u003csup\u003e\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e\u003cp\u003e\u003cb\u003eThe care needs of children with congenital heart disease at Kenyatta National Hospital\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe findings revealed that 40.7% of the children with CHD had medical insurance. Medical insurance is vital for children with chronic medical insurance to help ease the financial burden of frequent hospital visits or hospital admissions. These findings from the present study have shown that less than half of the participants had medical insurance, which points to a greater financial burden among caregivers. These findings are consistent with those of JIvanji et al. (2019) in East Africa, who reported that most caregivers of children with congenital heart disease make out-of-pocket payments during hospital visits, increasing the financial burden \u003csup\u003e\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e\u003c/sup\u003e. The findings also revealed that 22.7% of the caregivers reported receiving government financial support. This was primarily related to the NHIF, a national government initiative that helps fund the medical needs of children with CKD. Comparable findings were reported in a study in the United States, which reported that the support they received from the government was financial subsidies for the medical care of their children, resulting in 89.1% of families with a CHD child experiencing at least one financial burden \u003csup\u003e\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e\u003cp\u003eThe present findings also revealed that 60.7% of the children could perform some form of physical activity. This could be because most of the study participants were less than six months old and hence could perform little or no physical activity. Comparable findings were reported in a study conducted in Germany, which revealed that, among patients diagnosed with CHD, 8.8% reached the WHO-recommended 60 minutes of physical activity daily. However, in their study, the study population included children aged between 6 and 17 years \u003csup\u003e\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e\u003cp\u003eMost children in the study were admitted in their first birth year (67.3%). Most CHD diagnoses are made within the first three months after delivery, which explains the greater number of admissions in the first year of birth. According to a study conducted in the United States, 34% of children are diagnosed during the prenatal period, which allows for better management \u003csup\u003e\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e\u003cp\u003e\u003cb\u003eThe experiences and care needs of caregivers of children with congenital heart disease\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe findings showed that most caregivers were in shock and denial after being diagnosed with their children having congenital heart disease. Comparable findings were obtained in a study conducted in Ethiopia by Choi et al., who reported that most caregivers of children with CHD found it difficult to accept. Many of them highlighted that they waited for a long time to have the diagnosis, which increased their level of anxiety \u003csup\u003e\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e\u003c/sup\u003e. Similarly, another study in Iran reported that most caregivers isolated themselves after learning that their children had been diagnosed with congenital heart disease. Some parents receive news of their child's condition with sadness \u003csup\u003e\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e\u003cp\u003e The findings also showed that most of the caregivers highlighted that they received immense support from their family members and healthcare providers. Family and healthcare providers are primarily involved in caring for children with CHD. These findings were in line with those from a study performed in Italy by Simeone et al., which revealed that family members were supportive after discharge, especially considering that there was an increased workload and need to provide care to their needs \u003csup\u003e\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e\u003c/sup\u003e. Furthermore, a study in Iran revealed that healthcare providers are crucial in offering psychological support, which is integral to the well-being of their children \u003csup\u003e\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e\u003cp\u003e The findings also revealed that most caregivers were uncertain about their future and the well-being of their children. Consistent findings were obtained from a meta-analysis conducted by Dellafiore, which revealed that fear and uncertainty of the future was a major challenge for the caregivers of children with CHD \u003csup\u003e\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e\u003cp\u003eThe present findings established that 68% of the patients had depression, with 40% reporting severe depression. These findings are consistent with those of a study performed by Kihiu et al. (2020), which reported that the prevalence of depression among caregivers of children with CHD was 54%. However, the findings of the present study contrast with those of a study in the United States by Awaad and Darahim (2015), who reported that the prevalence of depression among caregivers of children with CHD was 32.2% \u003csup\u003e24\u003c/sup\u003e. The difference could be attributed to the increased quality of care for patients with chronic illness in the United States, including financial support, which is a major challenge for the well-being of children with CHD.\u003c/p\u003e\u003cp\u003eThe present findings also revealed that 72.7% of the caregivers had high to moderate burnout levels. Consistent findings were obtained by Ahmadi et al., who reported that 62.3% of caregivers had burnout, with 47.9% experiencing emotional exhaustion \u003csup\u003e\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e\u003c/sup\u003e. Caregiving for a child with congenital heart disease can be emotionally and physically demanding, leading to high stress levels and burnout among caregivers. Caregiving can be isolated, especially if the caregiver does not have a strong support network. This can lead to feelings of loneliness and frustration \u003csup\u003e\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e\u003cp\u003eIn conclusion, the findings emphasize the significant emotional and physical challenges faced by both children with congenital heart disease (CHD) and their caregivers. The high prevalence of symptoms and the emotional burden of caregivers underscore the need for early diagnosis, especially during the prenatal period, to reduce the shock and denial that caregivers experience. Furthermore, providing comprehensive mental health support for caregivers is crucial for addressing the psychological toll of caring for children with CHD. Strengthening healthcare systems to ensure early intervention, financial support, and access to physical activities for these children could enhance both their well-being and that of their caregivers.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003ch2\u003eConflict of interest\u003c/h2\u003e\u003cp\u003eThere are no conflicts of interest to declare.\u003c/p\u003e\u003c/p\u003e\u003cp\u003e\u003ch2\u003eEthical consideration\u003c/h2\u003e\u003cp\u003e Ethical considerations were considered in this study in accordance with the Declaration of Helsinki. Ethical approval was obtained from the Kenyatta National Hospital and University of Nairobi (KNH-UoN ERC) Ethics and Review Committee.\u003c/p\u003e\u003c/p\u003e\u003cp\u003e\u003ch2\u003eClinical trial number\u003c/h2\u003e\u003cp\u003eNot applicable\u003c/p\u003e\u003c/p\u003e\u003cp\u003e\u003ch2\u003eCorresponding authors\u003c/h2\u003e\u003cp\u003eTelephone: +254 741 115984; Email: \u003cb\[email protected]\u003c/b\u003e\u003c/p\u003e\u003c/p\u003e\u003ch2\u003eFunding\u003c/h2\u003e\u003cp\u003eThis study was self-sponsored\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eMA, OO and RN conceptualized the idea and design of the work, MA developed the study, OO and RN reviewed and approved the work, MA analyzed and interpreted the data; MA developed the Manuscript; OO and MA reviewed and approved the drafted work.\u003c/p\u003e\u003ch2\u003eData Availability\u003c/h2\u003e\u003cp\u003eResearch data is available for access upon request\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eBeaton A, Kamalembo FB, Dale J et al. 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In: \u003cem\u003ePractical Cardiology: Principles and Approaches\u003c/em\u003e.; 2022. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1016/B978-0-323-80915-3.00014-4\u003c/span\u003e\u003cspan address=\"10.1016/B978-0-323-80915-3.00014-4\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\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":"Congenital heart disease, congenital disorders, caregiver experiences, mental wellbeing, pediatric care","lastPublishedDoi":"10.21203/rs.3.rs-6905975/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6905975/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e\u003cp\u003eCongenital heart disease (CHD) is a commonly diagnosed congenital disorder that affects approximately 0.8\u0026ndash;1.2% of live births worldwide. This disorder has been significantly associated with an increased burden of care among caregivers. Thus, understanding the experiences and care needs of these children would be fundamental in defining an improved focus on their wellbeing. However, in the local context, these components have not been fully investigated.\u003c/p\u003e\u003ch2\u003ePurpose of the study:\u003c/h2\u003e\u003cp\u003eTo assess the experiences of caregivers and the needs of children with congenital heart disease at Kenyatta National Hospital.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e\u003cp\u003eThis study adopted a cross-sectional method utilizing both qualitative and quantitative approaches. The quantitative arm was conducted before the qualitative arm. The quantitative data were collected consecutively from caregivers of children attending clinics and those admitted to pediatric wards. Descriptive analysis was performed to describe the study population, where frequencies and percentages were used for categorical data and means and standard deviations were used for continuous data. Logistic regression was used to investigate factors associated with caregiver mental wellbeing. Thematic analysis was performed to develop themes from the qualitative data.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e\u003cp\u003eA total of 79.3% of the caregivers were female, 40.7% had secondary-level education, and 64% were unemployed. The mode of delivery was also assessed, where 78% of the mothers had vaginal deliveries. The common types of CHD identified included atrioventricular septal defects (AVSDs) (32.7%), patent ductus arteriosus (PDA) (28.2%) and atrial septal defects (ASDs) (10.5%). The results also revealed that 40.7% had medical insurance, 22.7% received some form of financial support from the government, and 39.3% were able to perform some physical activities. The assessment of the mental well-being of the caregivers revealed that 68% had depression and 73% had mild/moderate burnout. Four main themes and seven subthemes were identified. The themes identified include shock and denial, psycho-social wellbeing, uncertainty about the future and coping strategies.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e\u003cp\u003eThe findings revealed that the level of depression and burnout among caregivers of CHD patients is high, which highlights the need to ensure that the needs of these children are met. The creation of strong support groups should be integral in championing the needs of children with CHD.\u003c/p\u003e","manuscriptTitle":"Experiences of Caregivers and Care Needs of Children with Congenital Heart Disease at Kenyatta National Hospital","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-07-14 05:43:26","doi":"10.21203/rs.3.rs-6905975/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-07-11T08:24:17+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-07-11T07:46:11+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"263300007669216891970741821699595994222","date":"2025-07-07T17:00:14+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-07-06T16:31:20+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-07-06T16:01:27+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"137756084038600457021469356829300000860","date":"2025-07-06T15:37:36+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"19286439881964288608667082643362436454","date":"2025-07-06T13:50:34+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"323953902711912832960096679055059328805","date":"2025-07-06T09:23:42+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"244895224926601705435088040325741291481","date":"2025-07-06T08:22:32+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-07-06T08:12:59+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-07-03T13:29:10+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-07-02T19:07:36+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Pediatrics","date":"2025-07-02T19:04:36+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":"b596d92f-62b8-442f-b94b-552767c6d6c0","owner":[],"postedDate":"July 14th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2025-08-08T21:23:23+00:00","versionOfRecord":[],"versionCreatedAt":"2025-07-14 05:43:26","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-6905975","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6905975","identity":"rs-6905975","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}