|Year : 2021 | Volume
| Issue : 3 | Page : 137-143
Impact of Coronavirus Disease 2019 crisis on families of children with congenital heart disease and knowledge, attitude, and practices assessment: A hospital-based study
Shruti Atul Prabhu1, Manokamana Shaiju2, P Shiv Patel2, Priti Sahu1, Kiran Verma1
1 Department of Public Health, Sri Sathya Sai Sanjeevani Hospital, Nava Raipur, Chhattisgarh, India
2 Department of Nursing Services, Sri Sathya Sai Sanjeevani Institute of Nursing and Allied Healthcare Sciences, Nava Raipur, Chhattisgarh, India
|Date of Submission||18-Feb-2021|
|Date of Decision||20-Mar-2021|
|Date of Acceptance||02-Apr-2021|
|Date of Web Publication||05-Jul-2021|
Dr. Shruti Atul Prabhu
Department of Public Health, Sri Sathya Sai Sanjeevani Hospital, Sec-2, Atal Nagar, Nava Raipur - 492 101, Chhattisgarh
Source of Support: None, Conflict of Interest: None
Background: The current coronavirus disease 2019 (COVID-19) pandemic has disrupted the spectrum of health care, including delaying diagnoses and treatment, particularly for complex health conditions, such as pediatric patients with congenital heart disease (CHD). Objectives: The objective of this study is to assess the impact of COVID-19 crisis and lockdown on families of children with CHD and to study knowledge, attitude, and practices (KAP) regarding COVID-19 among them. Methodology: The purposive sampling was used, all patients (173) who consulted in the cardiology outpatient department during the study period and 190 CHD patients whose the date of surgery was previously scheduled during April and May 2020, but delayed due to the national lockdown were included in this study. Hence, the sample size of the study was 363. Phone calls were made to all patients' families. This study design was used due to current COVID-19 crisis to minimize contact with patients, in line with safety precautions mandated by the government. Results: 54.2% were male patients, 43.3% in the age group of 1–5 years, predominant diagnosis (37.3%) was ventricular septal defect. Majority of parents of CHD patients (78.2%) answered that primary source of information about COVID-19 was social media. Twelve percent patients had worsening of symptoms related to existing heart condition during this period. Parents of 26 patients (8.3%) faced difficulty in getting medicines due to lockdown. The KAP assessment found that a high proportion of parents possessed basic knowledge about the disease at the early stage of the pandemic. The average KAP score was 10.2 (Range 2–16). Conclusion: This is the first study to investigate the impact of COVID-19 on children with CHD during the pandemic. This group had faced considerable difficulty like the general population. KAP assessment showed that they had good knowledge about the pandemic; they were following precautionary measures, especially because of the child's condition, to ensure the child's safety.
Keywords: Chhattisgarh, congenital heart disease, coronavirus disease 2019, knowledge, attitude and practices, lockdown
|How to cite this article:|
Prabhu SA, Shaiju M, Patel P S, Sahu P, Verma K. Impact of Coronavirus Disease 2019 crisis on families of children with congenital heart disease and knowledge, attitude, and practices assessment: A hospital-based study. Curr Med Issues 2021;19:137-43
|How to cite this URL:|
Prabhu SA, Shaiju M, Patel P S, Sahu P, Verma K. Impact of Coronavirus Disease 2019 crisis on families of children with congenital heart disease and knowledge, attitude, and practices assessment: A hospital-based study. Curr Med Issues [serial online] 2021 [cited 2021 Sep 23];19:137-43. Available from: https://www.cmijournal.org/text.asp?2021/19/3/137/320643
| Introduction|| |
Coronavirus disease 2019 (COVID-19) first cases were seen in Wuhan, China, in late December 2019 before spreading globally. The current outbreak was officially recognized as a pandemic on March 11, 2020. The COVID-19 pandemic has disrupted health care, delaying diagnoses, and treatment, especially for complex health conditions and halting routine clinical service. In response, health-care systems have rapidly reorganized their services to ensure that patients continue to receive essential care while minimizing exposure to COVID-19 infection. Several countries had announced a lockdown to decrease the spread of virus. India had four phases of lockdown from April 25, 2020, to May 30, 2020, spanning 68 days, with varied restrictions depending on which parts of the country had more risk and containment zones. Patients were advised not to visit the hospital unless there is an emergency.
Among critical ailments requiring urgent intervention is congenital heart disease (CHD) that accounts for nearly one-third of all major congenital anomalies, with an incidence of 8–10/1000 live births reported from different parts of the world. Approximately 10.0% of present infant mortality in India may be accounted for by CHD alone. The unprecedented burden of COVID-19 has important implications for children with CHD. First, the diagnosis may be delayed as screening programs and diagnostic services have been decreased or suspended in many centers, and patients, wary of exposing themselves to the risk of infection, are reluctant to go to hospitals. Second, there is increased anxiety among parents of children with CHD regarding the lack of clarity in case an emergency arises for their child. Coping with CHD is a huge task, especially for children and their families. The lockdown situation which had led to unavailability of basic needs coupled with inability to access specialized care for CHD from centers where they usually access care makes these families more vulnerable for stress and anxiety.
The primary objective of this study was to assess the impact of COVID-19 crisis on families of children with CHD. As routine life was significantly affected with lockdown and fear of infection, this study attempted to understand the implications of this lockdown on children with CHD and their families. The secondary objective was to study knowledge, attitude, and practices (KAP) regarding COVID-19 among families of children with CHD. This study was conducted during the early onset of the pandemic in a vulnerable cohort of children with CHD. It helps to understand the general initial response of people toward COVID-19 and to assess the impact on health-care delivery and success of government's health campaigns. Health education intervention programs may be more effective if they were specifically designed for the vulnerable population.
| Methodology|| |
The study has been approved by the Institutional Ethics Committee at Sri Sathya Sai Sanjeevani Hospital, Nava Raipur, Chhattisgarh (letter no.: SSSHET/SSSSH/2020/07/01).
This hospital-based study was conducted at Sri Sathya Sai Sanjeevani Hospital, Nava Raipur, Chhattisgarh state in Central India. This institute is a major referral center dedicated exclusively for pediatric patients suffering from CHD and receiving patients from across the country. After the 3-week duration of the first phase of lockdown, restrictions were lifted for the green zones in the districts across Chhattisgarh. Since medical service is an essential service, this hospital was functional during the lockdown period as well as owing to the critical cases of operated CHD being treated in the intensive care unit. Routine cardiac outpatient consultation services began from April 20, 2020.
The present study was conducted from April 20, 2020, to May 31, 2020.
A cross-sectional survey design was used for this study including all health domains in it. A list of all patients who had consulted in the hospital cardiology outpatient department (OPD) from April 20, 2020, to May 31, 2020, was drawn. Purposive sampling was used and all patients who consulted within this time frame were included in this study. 173 patients had consulted in the OPD during this time period. An effort was made to connect with CHD patients whose date of surgery was previously scheduled for the month of April and May 2020 and it was delayed due to the national lockdown. There were 190 such patients scheduled for surgery during April to May 2020, but surgery was postponed due to lockdown. Thus, a total of 363 patients were included for this study and phone calls were made to all patients' families. This study design was used due to the current COVID-19 crisis to minimize contact with patients and in line with safety precautions mandated by the government to maintain social distancing and minimize the spread of infection. After making phone calls to all patients, 15 patients had already undergone surgery elsewhere, 12 children had died due to CHD complications, and contact could not be established in 6 patients. These 33 children were excluded from the study. Hence, the final number of the study participants is 330.
The investigators' contacted the parents/primary caregivers of patients included for the study telephonically and once they attended the call, investigator introduced her/himself. They were given information about the purpose of this study and verbal consent for participation was taken. The study questionnaire comprised four sections and total 31 questions as follows: First section of survey included basic sociodemographic variables such as (OPD patient or Scheduled for intervention, registration number, gender, age, state, district, area of residence, diagnosis, relation to respondent, type of family, religion, educational status of respondent, occupation of respondent, monthly income, and source of information about COVID-19). The second section included CHD specific questions regarding any difficulty faced or worsening of symptoms during the lockdown phase, accessibility of healthcare services, etc. The third section included questions related to the impact of lockdown on families of CHD patients, wherein each question had multiple choice responses specific to the question asked such as: did the lockdown affect your family (response: yes/no), was there any difficulty in getting daily needs items (response: yes/no), any financial loss due to lockdown (response: loss of job or daily wages/salary not credited or received/closure of business/others) any relief package received from government during the lockdown period (response: no/cash transfer in bank account/ration help/mask-sanitizer distributed/others), was lockdown followed in your area (responses: completely followed/only essential services allowed/not followed), how did they utilize their time at home (open ended question), etc., Each question was analyzed to see the predominantly quoted response and to see if there are any special responses.
The fourth section consisted of KAP assessment of parents/caregivers related to COVID-19. A previously validated tool was used for the measurement of knowledge, attitude, and practices related to COVID-19. Permission was obtained to use the tool. The tool was adapted to fit the local context with some minor revisions with a few additional questions. The questionnaire was first pilot tested and finalized based on edits required as per pilot test results.
Knowledge, attitude, and practices scoring
For all KAP questions scoring system was made, for each correct answer-one mark and for each wrong answer, zero mark was allotted. The questions carried equal weights and the final score of a respondent was a simple aggregate of the question-wise score. Modified Bloom's cutoff points were used to further individually categorize these KAP scores as nearly perfect scores (90% and above), average scores (60%–89%), and poor scores (below 60%).
During the phone call, if there was any concern regarding child's health condition raised by the parent/primary caregiver, the study investigators immediately consulted the senior medical team at the institute for their opinion and suggestions and this was conveyed back to the parents.
Data collected during the interview were directly entered in Google forms designed for this study. This data were exported in MS Excel. The Statistical Package for Social Sciences for Windows (SPSS Inc. Released 2017, version 23.0. Armonk, New York, USA) was used for the data analysis. Descriptive analysis of each of the demographic variables was conducted.
| Results|| |
Out of the 330 patients included in this study, there were 151 patients who had consulted in the OPD and 179 patients' whose surgery/intervention was postponed due to lockdown.
Sociodemographic details of study participants: As depicted in [Table 1], 179 (54.2%) were male patients and 151 (45.8%) were female patients. Majority of the patients 143 (43.3%) were in the age group of 1–5 years, followed by 64 (19.84%) in the age group of 5–10 years, 79 (24.0%) were <1 year including thrIn majority cases, respondents for phone interview were fathers 269 (81.5%), followed by mothers 32 (9.7%) and 29 (8.7%) were other family members. Majority (40.2%) of the respondents had completed their secondary education, 25.7% were graduates, 17.5% had finished their primary education, and 8.2% were postgraduates. One-fifth of the respondents were farmers (22.2%). Socioeconomic class was assessed using the Modified Kuppuswamy classification wherein 133 (40.3%) majority patient-families were identified as lower socioeconomic class.
|Table 1: Characteristics of children with congenital heart disease and their families (n=330)|
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When asked about the source of information about COVID-19 and how did they know about this current pandemic situation, parents of 258 patients (78.2%) answered that their primary source of information was social media, 99 (30.0%) through newspapers, and 7 (2.1%) said they got information from health professionals.
Impact of lockdown
An attempt was made to understand whether any of these patients had any trouble or worsening of symptoms during this lockdown period. Thirty-nine (12.0%) patients had worsening of symptoms related to existing heart condition during this period such as breathing difficulty, cyanosis, chest pain, and disturbed sleep. When asked about any other health condition or issues that they experienced during this time, 34 (10.3%) had unrelated health issues (unrelated as a direct consequence of CHD) such as diarrhea, vomiting, fever, cough, whereas 285 patients (86.3%) had no other unrelated health condition during this time. Of those who had unrelated health issues, majority of them had to make multiple visits to private clinics or health-care centers and were turned away at hospitals since they were catering only to emergency conditions. Parents of 26 patients (8.3%) faced difficulty in getting medicines due to unavailability owing to the national lockdown declared by government, whereas 289 families (91.7%) did not face any difficulty in getting medicines for their child or other family members in case of emergency. Of the 151 patients who had travelled to the outpatient for consultation, when asked about how they travelled to the hospital from long distances during this lockdown, 63 patients (41.7%) had travelled in their own vehicle to the hospital. Around 40.0% patients had hired a private vehicle to travel, incurring expenditure of INR 25,000–40,000. Many patient families had to take debt for this purpose. Around 18.5% patients had travelled to hospital from other states before the lockdown and were stuck here as no public transport was available to go back to their state. Thirty-three parents (19.9%) took permission from the local government authority for e-pass for inter-district and inter-state travel to reach hospital for the treatment and other patients have used ECHO report to reach hospital for the treatment. Thirty percentage of patient families mentioned that police offered help and guided them when they got to know that patients were travelling to the hospital for treatment of CHD. Fifteen percentage of patient families mentioned that local administration like Collector's office had helped them to arrange for ambulance for travel and transport of sick children. After returning to their hometowns, the local district administration also ensured safe and convenient home quarantine facilities for these families. They had taken keen interest and went beyond their routine work profile to support these families and did commendable work in ensuring safe transport of sick children.
Around 131 families (40.9%) faced financial difficulties due to the lockdown owing to loss of work/job and did not have money to travel to the hospital for their child's medical consultation or surgery. Regarding getting daily need items such as grocery/vegetables/milk, etc., majority of the families, i.e., 297 (90.0%) did not face any difficulties, they managed it from local vendors and only 21 (6.6%) families faced difficulty in getting daily need items. Majority of patient families, i.e. 196 (63.63%) received some kind of relief package from government during the lockdown period like ration and/or cash in their account, mask, and sanitizers were distributed by the local government, whereas 112 patient families (36.4%) did not receive any help from the government. The general feedback was that parents were more worried about getting timely treatment for their child's condition and were not really concerned about the pandemic in general. When patient families were enquired whether lockdown was followed in their area, 192 (60.4%) parents said that complete lockdown was followed in their area, 120 (37.7%) said that only essential services were allowed during a fixed time period, and 6 (1.9%) said lockdown not followed properly in their area. When asked about how they spent their time during this lockdown, the general reply was that they spent quality time with family, helping in household work, gardening, caring for children, watching television, and using mobile phones.
Knowledge, attitude and practices scores
This study found that a high proportion of parents possessed basic knowledge about the disease at the early stage of the pandemic. The KAP scoring was done to assess KAP in this cohort regarding COVID-19. The final score of a respondent was a simple aggregate of the question-wise score. In this study, there were total 16 questions (Knowledge-7, Attitude-3, and Practice-6). Thus maximum score is 16. Average KAP score was 10.2 (range 2–16) wherein 30.0% families had nearly perfect scores (90% and above), 54.0% families had average scores (60%–89%), and 14.0% families had poor scores (below 60%) [Table 2].
The mean knowledge score of respondents was 5.52 (standard deviation ± 0.95). A perfect knowledge score of 7 was obtained by 30.0% families. It was observed that 306 (95.6%) families had correct information that it spreads from an infected person through contact with droplets mainly through surfaces, whereas only 14 (4.4%) did not have any information about the same. When asked about different types of protective measures used for hand hygiene, multiple responses were received, 99.0% replied frequent handwashing, 81.0% replied use of hand sanitizer, and 9.1% replied use of gloves for maintaining hand hygiene. When asked whether staying at home is necessary to prevent spread of infection, 314 (98.1%) families believed that staying at home is safe for their family and community, only 6 (1.9%) families were against staying at home. It was noted that families understood importance of maintaining 1–2 m distance between two persons in community contact for social distancing. When enquired if there was any specific medicine or vaccine for COVID-19 available at present, 265 (83.1%) families said that there is none available at present and 53 (16.6%) replied that they have no idea about it. Three questions were asked to assess their attitude toward the pandemic. 314 (98.1%) respondents believed that lockdown was necessary and 6 (1.9%) felt it was not necessary. 92.1% families had positive attitude toward using mask in public for the protection of self, family, and community. Seventy-eight percent parents were likely to self-report their symptoms/history of travel to Covid-19 affected areas, to the concerned local government authorities but 21.3% parents denied self-reporting for fear of being tested and quarantined away from their families.
A perfect score of 6 for assessing practice was obtained by 26.0% families. When asked whether they had to postpone any planned social gathering due to the lockdown, only 38 families responded that they had earlier planned a social gathering during this time, of which only 29 (9.1%) families postponed or cancelled social/family event during this period, whereas 9 (2.8%) families conducted events as scheduled. Fifteen percent parents gave positive response for visiting a crowded place despite lockdown. About twenty percent of the respondents in the study admitted that they stocked up on essential items that could last them for over a month quoting that since their child has CHD, they did not want to risk running out on medicines, essential supplies, etc.
| Discussion|| |
This article attempted to analyze the impact of lockdown on a special group, i.e., children with CHD and their families and also attempted to study the knowledge, attitude, and practices of this group towards Covid-19. Its strength lay in the sample collected during the early onset of the disease in India that captured the initial response of the population. The study was undertaken during the 21-day nationwide lockdown as a response to the COVID-19 pandemic. The restriction of movement and risk of transmission through a face-to-face collection of data meant that the survey could only be conducted through online questionnaires using a nonprobability sampling method.
COVID-19 pandemic has inevitable consequences for medical care of patients without COVID-19. Primary care access has been severely disrupted by restrictions implemented to prevent COVID-19 transmission. Challenges included closure of routine health-care services, only emergency medical/surgical services were functional, dramatic patient attendance drops, parental fears resulting in hesitance to bring their children to hospital for care, limited personal protective equipment, and limited availability of COVID-19 tests. In this study, we noted that parents had to take extra efforts to access treatment for children with critical illnesses requiring urgent intervention. Twelve patients had travelled more than 1000 km to the hospital for definitive treatment of CHD, which in this current situation is extremely difficult but parents had made Herculean efforts to achieve this so that their child could survive against all odds.
Children are a population who have been spared the significant burden of severe illness. To date, two studies (n = 2143 and n = 171) have described similar Covid-19 findings in pediatric patients. Boys are more commonly affected than girls, and most children were either asymptomatic or mildly symptomatic. Children aged younger than 3 years and those with CHD seem to be disproportionately impacted. Hence, this study was undertaken to assess the impact of COVID-19 and lockdown on these patients and their families and assess their COVID-19 related KAP.
In our study, surgery/intervention for 179 patients (54.2%) was postponed due to the lockdown. In a study by De Joode et al. conducted in Netherlands in cancer patients, overall, the most frequently reported consequence (52.0%) was the conversion from the hospital visit to consultation by phone or video, appointments were more frequently cancelled and treatments were more frequently adjusted. Social media was the predominant source of COVID-19 information for the majority of patient families in our study. In a study conducted by Abdelhafiz et al. in Egypt, novel channels including, social media platforms, and the internet represented the most important sources of information, at the expense of more traditional media platforms, namely newspapers. Of those patients who had unrelated illnesses, they faced considerable difficulty in accessing care, as hospitals were taking only emergency cases. However, it was heartening to note, that essential service like pharmacy was open and majority patients (289; 91.7%) did not face any difficulty in getting medicines for their child or other family members in case of emergency. Despite the several challenges during this pandemic, there was no apparent deterioration in clinical condition of these children with CHD in the large majority of patients included in this study. Similar experience was noted by Papadopoulos et al. in children with Asthma, they do not appear to be disproportionately affected by COVID-19. Outcomes may even have improved, possibly through increased adherence and/or reduced exposures.
Several studies conducted in other Asian countries have indicated the high levels of COVID-19 knowledge among the general population and health-care workers., Differences in measurement and scoring systems do not make it possible for accurate comparisons of knowledge levels across these studies.
The lockdown created a sense of fear and insecurity among the masses about the continuous availability of essential items (including groceries, fruits, vegetables, and medical supplies). This led to widespread panic and stockpiling of these essential items by the public across the country before Prime Minister Modi assured that supply of essential items will not be affected. About 20% of the respondents in the study admitted that they stocked up on essential items that could last them for over a month quoting that since their child has CHD, they did not want to risk running out on medicines, essential supplies, etc. A study by Agarwal et al. noted that 22.0% respondents were stockpiling of essential items, this study was done in a literate and affording population, through online survey. A study in Nepal found that 93.1% participants had not visited any crowded place and 92.4% participants wore masks while going out. 94.44% secured at least above-average score. An online study in South India state by Amalakanti et al. found that the participants had a positive (70.0%) attitude toward the COVID-19 situation and 77.0% of subjects followed good preventive practices. However, we found that women, people with low education and nonmedical background were associated with poor knowledge and practices. The attitude was poor in those occupied in physical works.
Although attitudes toward COVID-19 were optimistic, most respondents took precautions to prevent infection by COVID-19: not going to crowded places and wearing masks when going outside. These strict preventive practices could be primarily attributed to the very strict prevention and control measures implemented by local governments such as banning public gatherings. Second, this could be the result of the good knowledge regarding the high infectivity of the COVID-19 virus, which can be easily transmitted between people via invisible respiratory droplets, also fear of transmitting infection to children who were already vulnerable due to their condition of CHD. This was also observed by Zhong et al. study that showed only 3.6% residents went to crowded places and 2.0% did not wear masks when leaving homes recently.
| Conclusion|| |
This is the first study to investigate the impact of COVID-19 on children with CHD during the pandemic. This group had faced considerable difficulty like the general population. KAP assessment showed that they had good knowledge about the COVID-19 pandemic, they were following precautionary measures especially because of the child's condition, to ensure the child's safety. Local government officials had helped families of children with CHD in travelling long distances to the hospital for timely treatment during lockdown.
The study was conducted only among those patient families that were willing to participate and whom we could reach out over phone calls.
The authors sincerely acknowledge and thank the patients and their family members for their consent and participation in this study. We thank Sri Sathya Sai Sanjeevani Hospital management and administration for its support and encouragement in all initiatives undertaken by the teams.
Research Quality and Ethics Statement
The authors of this manuscript declare that this scientific work complies with reporting quality, formatting and reproducibility guidelines set forth by the EQUATOR Network. The authors also attest that this clinical investigation was determined to require Institutional Review Board/Ethics Committee review, and the corresponding protocol/approval number is IRB minute number SSSHET/SSSSH/2020/07/01. We also certify that we have not plagiarized the contents in this submission and have done a plagiarism check.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2]