Paediatrica Indonesiana

p-ISSN 0030-9311; e-ISSN 2338-476X; Vol.63, No.6(2023). p.483-91; DOI: https://doi.org/10.14238/pi63.6.2023.483-91

Original Article

Determinants of rheumatic heart disease:

findings from qualitative research approach
Rudy Ngau Ajeng, Mohammod Mizanur Rahman, Asri bin Said,
Abang Safuan bin Adenan, Mohamed Ameenudeen, Greta Miranda Goh Kim Choo,
Muhammad Siddiq, Mohamed Faiz Gahamat

R
Abstract heumatic heart disease (RHD) is a
Background Rheumatic heart disease (RHD) is an autoimmune chronic heart disease caused by an
heart disease following unresolved or untreated acute rheumatic abnormal immune response to a Group
fever (ARF), which results in irreversible valve damage and heart
failure. Strategies for managing RHD could be planned to under- A streptococcal infection in susceptible
stand the disease determinants in local settings. individuals.1 Acute rheumatic fever (ARF) precedes
Objective To explore the determinants of RHD among the family RHD and can affect multiple organs, especially the
with an RHD case.
Methods The study was a qualitative design using a grounded heart, resulting in irreversible valve damage and heart
theory approach after in-depth interviews with respondents from failure. Untreated RHD could lead to heart failure
families with RHD patients. Analysis was conducted after the or death. More than 33 million cases of RHD were
scripts were finalized. Initial, intermediate, and advanced cod-
ings were performed. Ten respondents agreed to participate and estimated to have occurred in countries where the
completed the qualitative data collection process. disease is endemic, and more than 200,000 cases were
Results The analysis yielded two theme categories of what could reported in countries with a non-endemic pattern.2
have led to RHD among respondents due to internal and external
causes. Internal causes were considered factors that could be In Malaysia, the burden of RHD was reportedly
managed or manipulated to improve an individual and family’s lessened, characterized by a decreasing trend of
capacity. In contrast, external causes were considered factors that mortalities due to RHD, but heart valve surgeries due
could not be managed or manipulated to improve an individual’s
capacity or family. Therefore, these factors were considered beyond to complications of RHD have been increasing.3 This
their control. event was due to the silent nature of RHD in which
Conclusion This study explored RHD determinants individuals presented to health facilities only when
according to the patients’ and their families’ perspectives.
A holistic approach can be applied to managing RHD by
symptoms persisted, reflecting they were already at a
considering these factors. [Paediatr Indones. 2023;63:483-91; stage requiring further treatment and care.
DOI: https://doi.org/10.14238/pi63.6.2023.483-91 ].

Keywords: rheumatic heart disease; acute rheumatic

fever; causes; determinants; children

From the Faculty of Medicine and Health Sciences, Universiti Malaysia

Sarawak, 94300, Kota Samarahan, Sarawak, Malaysia.

Corresponding author: Md. Mizanur Rahman. Faculty of Medicine and

Health Sciences, Universiti Malaysia Sarawak, 94300, Kota Samarahan,
Sarawak, Malaysia. Phone: +60109745920 Email: rmmizanur@unimas.
my.

Submitted June 26, 2022. Accepted December 12, 2023.

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 Rudy Ngau Ajeng et al.: Determinants of rheumatic heart disease: findings from qualitative research approach

In several previous studies, ARF and RHD have going children in the divisions of Kuching, Samarahan,
been linked to socio-economic and environmental and Miri, Malaysia, was conducted previously and
factors.2,4-7 This evidence was contributed mainly managed to detect 14 respondents with RHD. Thus,
by the studies and reports from the low and middle- this study targeted the same population and was
income countries in Africa, Oceania, South Asia, designed to include the children (or their parent or
and some interior regions of developed nations in guardian) of the primary and secondary school-going
Australasia. Although these studies and reports were age groups ranging from five to 25 years old diagnosed
essential for advancing ARF and RHD management with RHD during the survey.
for Malaysia, the concept of “one size fits all” might The in-depth interviews were primarily facilitated
not be applicable to RHD management in local by one author (RNA), a medical officer with ten years
settings as different nations would have their issues of experience in medical practice. Medical officers
and challenges.8 Therefore, a study on RHD among (MSD and MFG) with nine years of medical practice
children in the local setting would be warranted, experience worked with the primary facilitator. All
which might assist commentaries regarding the three facilitators were male doctors, and at least one
suitable approach for RHD study in the local context. of the facilitators lived and worked in each division
A clear explanation of non-medical components where interviews were conducted and were fluent
of disease prevention would be a compelling reason for in the local language. Study participants had met at
health agencies and others to collaborate with those least one research team member during the previous
involved in economic development and sustainability, echocardiographic survey.
the environment, and human capital development. The respondents were recruited using purposive
When major stakeholders like the government sampling and contacted over the phone since they had
have a clearer understanding of the current RHD been identified from the echocardiographic survey.
situation, future commitment could be established No issue was experienced in building a rapport before
to manage the disease. Moreover, according to the the interview, given that a good relationship had been
local settings, this study would explain the modifiable established during the echocardiographic survey.
socio-environmental factors in RHD's primordial and The respondents could either be the RHD cases
primary prevention. Many comprehensive strategies themselves or their parents. Once the respondent
could be planned for managing RHD in a population agreed, the interview time, date, and mode were
by elucidating the disease determinants in the local confirmed. Before the recording, respondents were
settings. Therefore, this study aimed to explore the informed about the confidentiality of the information
determinants of RHD among families with an RHD gathered and advised to be comfortable and away from
case. any disturbance. The interview had two facilitators,
whereby one person served as the interviewer and
Methods performed the notetaking while another played the
role of an observer as well as notetaking. The interview
The study was reported according to the COnsolidated was conducted in the local dialect according to the
criteria for REporting Qualitative research (COREQ).9 respondent’s preference in addressing the question
The study was a qualitative design using a grounded of the RHD causes aligning with the interview plan.
theory approach, focusing on creating conceptual After each interview session, the audio recordings
frameworks or theories by building inductive were transcribed into written form. The transcriber
analysis from the data.10 This qualitative method performed the transcription manually, listened to the
prioritizes analysis over description, new categories recordings a few times, and began typing them line
over preconceived ideas and existing theories, and by line. Before completing each transcription, the
systematically focused sequential data collection transcriber conducted another round of checking by
over large initial samples. Therefore, this study listening to the same recording and reconfirming the
was conducted to develop theories explaining the transcription. Upon executing the transcription, a soft
determinants contributing to RHD. copy was sent to each respondent to countercheck
An echocardiographic survey among school- that what had been written was correct and aligned

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 Rudy Ngau Ajeng et al.: Determinants of rheumatic heart disease: findings from qualitative research approach

with the context of the conversation during the in- have caused RHD were identified. These major
depth interview. Following that, the transcription domains were the theories or the theme categories
underwent a translation process into English. A that would result in a sensible storyline when linked.
translator from a medical background who was fluent Two researchers conducted all three coding levels
and skillful in writing completed the translation in independently, and the findings were compared
English and local dialects. The translation was done upon completing the coding and analyses. While
line by line to preserve the transcription accuracy overlapping results were accepted, discrepancies and
during the translation. The respondent was then differences were discussed in the presence of a third
sent a soft copy again to confirm that what had party. When all three researchers were satisfied with
been translated was accurate and according to the the findings, the finalized version was prepared to be
context of the conversation. No repeat interview was presented. Respondents were labeled before coding
conducted. The audio recordings were captured using according to their sequence number, gender, and
an Apple iPad Mini, whereas Microsoft Word 365 age group. Sequence numbers (R) were paired with
was used for all transcription and translation. After their number, gender was labeled with male (M) or
that, the translated verbatim was uploaded into Atlas female (F), and age groups were either adult (A) or
ti version 22 software for qualitative data analysis. teenager (T).
Memoing was performed throughout the analysis to Unique components of qualitative research
capture the explanation behind every qualitative data concerning qualitative rigor were safeguarded
analysis process.11 throughout the process, including credibility,
Following the grounded theory approach that dependability, confirmability, and transferability
requires the researcher to collect, code, and analyze for the study to be trustworthy. 13,14 Credibility
the available data before further data collection was assessed to ensure that the findings from the
was undertaken, the transcripts underwent a free respondents’ perspectives were true, credible, and
coding process from the first to the last respondent believable. Meanwhile, dependability ensured the
according to their turns for an in-depth interview.12 findings were repeatable when the inquiry occurred
The coding was undertaken line by line and focused within the same cohort of participants, coders, and
on the respondent’s lines. As more transcripts were context.15 Credibility was assured by training the
subjected to the free coding process, the researcher research team to perform their roles through adequate
would gain a better understanding of the transcripts. knowledge, research skills, prolonged engagement,
After all free codings were created, new and different and debriefings conducted with the respondents
codings were discovered as long as they were coded throughout the studies. Meanwhile, dependability
differently, like in various spellings or the same was ensured with detailed study drafts throughout the
code described differently. Upon merging all the study and establishing an audit trail of detailed track
free codings, they were further grouped into initial records of the data collection process. Confirmability
codings, also known as the subthemes.11 Thereafter, aimed to extend the confidence that the results would
intermediate coding was built on the initial coding be confirmed or corroborated by other researchers,
phase, whereby initial coding would be a basic data and this was achieved through reflexivity and
structuring activity. Intermediate coding would then triangulation.14,15 Reflexivity was performed by memo
transform basic data into more abstract concepts, writing and team discussion throughout the study,
allowing the theory to emerge from the data. A core while triangulation was undertaken by comparing the
category would become evident as categories were findings during the data analysis. Lastly, transferability
established. Hence, relationships were identified was ensured via the application of purposive sampling
between the categories and the analysis was refined. In in recruiting respondents and point of saturation in
other words, intermediate coding would be the phase data analysis.15
for theme construction. This study obtained ethical clearance from the
Based on the analysis using the grounded Faculty of Medicine and Health Sciences Research
theory approach and information gleaned from Ethical Committee, Universiti Malaysia Sarawak.
the respondents, the major domains of what could Informed consent was obtained before participation,

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 Rudy Ngau Ajeng et al.: Determinants of rheumatic heart disease: findings from qualitative research approach

while the confidentiality of the personal details was Lastly, seven respondents were from the Dayak race,
declared. and the remaining three were from other ethnicities
(Table 1).
The analysis was conducted according to the
Results grounded theory approach, whereby the identification
of free coding was started in each transcript, followed
Ten respondents agreed to participate and completed by merging processes into the initial coding and
the qualitative data collection process, while others generating subthemes. 16 Coding processes were
were either unreachable or refused to take part in the performed until a saturation point was reached. As
study. Two face-to-face interviews and eight phone soon as subthemes were established, intermediate
calls lasted about 10 to 20 minutes as long as the coding was performed by grouping all subthemes into
respondents had something to say. Respondents were themes. Subsequently, an advanced coding process
stopped when they had nothing more to add about the was carried out by categorizing all themes according
questions asked. One-fifth of the respondents were to a sensible and appropriate storyline.12 Based on
males, while the remaining four-fifths were females. the analysis using the grounded theory approach
Regarding the relationship with RHD patients, two and information gathered from the respondents,
respondents were the patients themselves, whereas two major domains of what could have caused RHD
the other eight were family members. Likewise, two were identified. A brief description would diagnose a
respondents were fathers among the family members, child with RHD due to internal and external causes.
and the eight were mothers. Furthermore, nine The findings from the qualitative data analysis are
respondents were adults, and one was a teenager. summarised in the following thematic map (Table 2).

Table 1. Characteristics of the respondents for the in-depth interview (N=10)

Respondent Gender Relationship with patient Age group Ethnicity
1 Male Family (father) Adult Dayak
2 Female Own self Teenager Dayak
3 Female Family (mother) Adult Others*
4 Male Family (father) Adult Dayak
5 Female Family (mother) Adult Dayak
6 Female Own self Adult Others*
7 Female Family (mother) Adult Others*
8 Female Family (mother) Adult Dayak
9 Female Family (mother) Adult Dayak
10 Female Family (mother) Adult Dayak
*Others include Malays and Melanau

Table 2. Thematic map of qualitative analysis (N-=10)

Theme categories Themes Sub-theme N
Internal causes Individual factors Hygiene practice 5
Spirituality 1
Immunity 1
Socioeconomic situation Income 6
Knowledge application Crowding 8
Lack of knowledge 10
External causes Environment Other unexplained cause 5
Unfavorable environment 8
Healthcare Healthcare accessibility 8

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Internal causes were considered factors that someone prays more, their hope for betterment will
could be managed or manipulated to improve an affect their lifestyle towards matters that would be
individual’s capacity or family.17 When internal beneficial for health.
causes were left unaddressed, individual factors, …. for me, doctor, there is no other way for me to
socioeconomic situations, and knowledge application just pray. That’s the key for my child (R4, M, A).
would decline towards the damaging or harmful
direction, making someone susceptible to diseases Theme: Socioeconomic situation
and infirmity.5 When a person comes from a low socioeconomic
The individual and their family could not able to situation, they would usually be at a higher risk for
do something to improve themselves in any or every poor health and diseases like RHD. Low income
aspect of individual factors to prevent themselves and home crowding were the proxy measures of the
from being at risk of getting ARF or worsening into socioeconomic situation. Nevertheless, low income
RHD. Individual factors, socioeconomic situation, might be related to home crowding because the family
and knowledge application generated themes from the could not find and get a space of their own. That
internal causes. Therefore, all the initial codes would being the case, the socioeconomic situation would
reflect that these situations would be unique among determine the child’s health status.
respondents as an individual. Individual factors could
be among health determinants as different people Subtheme: Income
would have their practices, beliefs, and immunity Therefore, by not living in a better home
levels. environment, this situation might be a condition that
does not promote health but causes disease instead.
Subtheme: Immunity … Because there is no place left to stay. Indeed,
A child with low immunity would be prone to that place is our people’s home. Not mine but my father’s
diseases likewise. for a long time. So, I got a job in the plantation, the oil
Maybe his immunity is low, but maybe, can give palm plantation also within the stream of Sungai Adong
him vitamins and eat more vegetables. If his immunity is (R1, M, A).
strong, maybe he can avoid getting the illness (R3, F, A). ... My wife is a housewife. I work with the company,
building the road—just a driver (R4, M, A).
Subtheme: Hygiene practice … That’s not there, nothing. Therefore, used a
When there is a lack of hygiene practice, this generator (R1, M, A).
situation might make someone prone to infection
and vice versa. Subtheme: Crowding
… But maybe because he hangs out with his friends Most respondents mentioned that many home
near the house within the housing area. When I saw there occupants were living under one roof. So, when
were boys and his friends, they didn’t seem to take care someone gets sick or unwell in a crowded home, that
of personal hygiene as well. I am afraid they’re carrying would harm the rest in that same house. Likewise,
dirty germs as well (R3, F, A). when different individuals get exposed and sick
… That’s the problem with it. This toilet was a toilet from outside, they might endanger the other home
that went straight to the river. It was a bit dirty back then occupants.
(R1, M, A). … Yes. This too, I can comment a little on this. If
So, the villagers are more dependent on the river. the house is too crowded and there are many families in
So, the water from the river would be channeled through the house. That too can cause this problem. Because we
the village pipes. So that water is used for cooking and don’t know what they’re dealing with. Sometimes, they
washing (R10, F, A). have a fever or flu (R10, F, A).
… During the school days, they mostly stay in
Subtheme: Spirituality dormitories. Maybe it’s crowded in their dormitory because
The same goes for spirituality, as individual she was in a dormitory from primary school to secondary
religious beliefs and practices would differ. When school (R4, M, A).

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 Rudy Ngau Ajeng et al.: Determinants of rheumatic heart disease: findings from qualitative research approach

Theme: Knowledge application is also negatively affected.20,21 Their health in general

When there was an absence of or inadequate would also be affected by the community surrounding
knowledge, the respondent could not tell the cause them and the condition of their surroundings. Thus,
of RHD. However, when the appropriate knowledge the external causes are categorized into environment
about RHD was applied, the respondent could and healthcare accessibility.
identify and be away from the cause of ARF and
RHD. Therefore, when there was a lack of knowledge, Theme: Environment
respondents could not practice preventive measures The environment would include all areas outside
against the disease. Also, this would allow the disease the home wall, within the house compound, and
to be in “stealth” mode, as humans do not know of beyond the house compound within the residential
its existence. area or village. Apart from being exposed in their
home’s immediate area, exposure could also happen
Subtheme: Lack of knowledge elsewhere. Some next-door neighbors maintained
Respondents could shunt away wrong concepts their surroundings, making the respondent’s home
about RHD when the proper knowledge was applied in better condition.
during the interview and throughout their lifetime.
… So, I’m not sure if the home environment plays a Subtheme: Unfavourable environment
role or not. We might not have any problem with the area Given that personal spaces within the home
within the house (R3, F, A). compound were favorable for health, this does not
I don’t know. How? I have no idea either. What does guarantee the surrounding area or the residential
the doctor think? (R9, F, A). areas will be as good since it would be due to other
I don’t know how to avoid it because I also don’t individuals’ practices. Therefore, the respondents’
know what is the cause. So, it’s hard to avoid it (R5, F, A). environment should be from the pooled results of
Honestly, Doc, I’m not sure (R8, F, A). everyone in a residential area or anyone who ever
Knowledge application is also challenging existed in that same area.
due to respondents having different concepts of Yes. Since I was young, there have been people
understanding. For example, all causes were mentioned who have smoked cigarettes near our place (R2, F, T).
because the child had experienced the condition. … But maybe the environment outside the house,
However, even though respondents expressed these because I don’t even know how far he went playing with
thoughts, they still said they were unsure. his friends (R3, F, A).
… Maybe she was too fat since childhood (R7, F, A). … Usually on the football field with his friends
… Maybe because it was too strong, maybe the kick (R4, M, A).
was strong. Maybe, it’s possible (R6, F, A). Because we here are living in a house located by the
… It already existed before birth. His heart was roadside. It’s indeed dusty. Most likely, that was the cause
disabled (R1, M, A). too. We can’t deny it (R9, F, A).
One factor considering the area of our house is
Theme category 2: External causes sometimes, among the residents they will throw garbage
External causes are considered factors that everywhere, or throw it by the river. There is a drought, so
cannot be managed or manipulated to improve an the trash will be stopped without drifting away (R10, F, A).
individual’s capacity or family. Therefore, these
factors were considered beyond their control. These Subtheme: Healthcare accessibility
external causes would require something or a group Healthcare accessibility will always be a problem
of powers, such as the authority or the collaborative due to geographical challenges, especially in Sarawak.
effort within the community, to manage or take Given the limited access to healthcare, the children’s
control.17 Health could be preserved or obtained with health would be less advantaged apart from the
some influence from the authorities or through good lack of infrastructure and basic facilities. Moreover,
collaborative effort and the other way around.18,19 since RHD is usually asymptomatic, parents would
When the environment is unhealthy, human health ordinarily assume everything was fine. This would

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 Rudy Ngau Ajeng et al.: Determinants of rheumatic heart disease: findings from qualitative research approach

reduce the opportunity for the respondents to improve addressed, that person’s health or life situation would
their health. Besides, no early screening could be remain status quo or continue to deteriorate.19,20,25 In
provided when healthcare access is problematic. external causes theory, the opportunities could be the
This village has many factors that the residents need positive factors favorable for health or life situation
to care for, especially these children. The reason is that improvement, and the threats could be otherwise.
these children when they are in the village, they are not How much an individual or family tries to intervene
aware that the village environment is not clean anymore in their health or life situation, these opportunities and
(R10, F, A). threats would still be unaffected unless intervention
So, there was no health check whatsoever. We all came from a higher power or authority. The internal
won’t know (R5, F, A). and external causes storyline would make more sense
Maybe have them got checked earlier. But during for these reasons.Moreover, the findings of thematic
their younger age, they never miss any nurse or doctor’s analysis had been in line with the social determinants
appointment. Maybe during that time, the doctor should of health, whereby the non-clinical variables that
scan their heart. I guess (R8, F, A). affect health outcomes could be viewed as factors
Maybe from a young age, she lived in a village far that could and could not be managed or controlled
from the hospital (R5, F, A). by individuals and families.19,21
Building a relationship between the researcher
and the respondent is integral to all types of qualitative
Discussion studies.26 There were minimal difficulties in building
a rapport with the respondents before in-depth
Internal and external causes are some of the issues interviews for qualitative data collection, given
that could not be handled and vice versa, which led that the same people had been screened during the
to adverse health consequences and the occurrence of echocardiographic survey. Therefore, the strength
RHD. This storyline is similar to past publications,17,22 of this study lies in the data collection, considering
whereby internal and external factors determined the the respondents were expected to respond without
likelihood of engaging in a particular behavior that hesitancy during the interview. Since the target
either encourages or discourages health-relevant population in data collection was only limited to
behaviors. Although the internal and external factors children with RHD, the findings can be generalized
were described differently than internal and external to a lesser extent unless respondents from the group
causes, similar conclusions were implied as internal without RHD were included. Opinions and inputs
factors would still be manageable by individuals or from healthy individuals or families without RHD
families. Furthermore, external factors would also go would contribute to the value of the findings from
beyond an individual’s or family’s control and may the qualitative analysis.
require enormous extra efforts or authority to manage. Research implications suggest that the
To complement the storyline grounded on the findings may be necessary for policy, practice,
qualitative analysis, the internal and external causes theory, and subsequent research improvements and
could also be viewed as the Strength, Weakness, implementations. Given that RHD predominantly
Opportunity, and Threat (SWOT) analysis. The affects lower and middle-income people, the screening
strengths and weaknesses of SWOT analysis could program could target the lower socioeconomic status
be considered an internal aspect of a situation, population. By addressing the problem from the
whereas opportunities and threats could be regarded perspective of the local community, a holistic approach
as external aspects.23,24 Therefore, in internal causes could be strategized, and effective implementation
theory, a person’s strength could be used to better could be done. These significant stakeholders could
their health or life situation while an individual’s tailor their approach by promoting and encouraging
weakness could be remedied accordingly with the self-improvement in socioeconomics and the home
same aim to improve health or life situation. Likewise, environment. Since these aspects of life depend on
when the strength of a person was not leveraged as an individuals and families, the government does not
advantage, and the weakness was not appropriately need to be entirely responsible for personal matters

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 Rudy Ngau Ajeng et al.: Determinants of rheumatic heart disease: findings from qualitative research approach

that could and should be managed by themselves. 4. Sharma N, Toor D. Impact of socio-economic factors on
In conclusion, this study explores the increased risk and progression of rheumatic heart disease in
determinants of RHD according to the family with developing nations. Curr Infect Dis Rep. 2019;21:21. DOI:
RHD diagnosis and their perspectives are seen as https://doi.org/10.1007/s11908-019-0677-6.
internal and external causes. A holistic approach 5. Coffey PM, Ralph AP, Krause VL. The role of social
can be applied to manage RHD after considering determinants of health in the risk and prevention of group A
these factors. Moreover, this study can also be used streptococcal infection, acute rheumatic fever and rheumatic
as important evidence to attract the attention of non- heart disease: A systematic review. PLoS Negl Trop Dis.
health stakeholders so that a collaboration that would 2018;12:e0006577. DOI: https://doi.org/10.1371/journal.
make a difference could be turned into a reality. pntd.0006577
6. Zühlke L, Karthikeyan G, Engel Mark E, Rangarajan S,
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Conflict of interest children and adults with rheumatic heart disease from 14
low- and middle-income countries. Two-year follow-up of
None declared. the Global Rheumatic Heart Disease Registry (the REMEDY
Study). Circulation. 2016;134:1456-66. DOI: https://doi.
org/10.1161/CIRCULATIONAHA.116.024769.
Acknowledgments 7. Yilgwan CS. Socioeconomic status, benzathine penicillin
prophylaxis, and clinical outcomes in patients with rheumatic
Thanks to Universiti Malaysia Sarawak for paving the way to heart disease [dissertation]. [Minneapolis (MN)]: Walden
facilitate this study from the beginning until the end. Special University; 2020.
acknowledgment to the organizations and individuals involved 8. Vuuren JJV. Six critical global issues: What are the world’s
throughout the echocardiographic survey prior to this study. biggest problems and how can I help? Global Vision
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for ensuring the continuity and progress of this study. Last but www.gvi.co.uk/blog/6-critical-global-issues-what-are-the-
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