Patterns of health care for
children with asthma: A qualitative study
Rao C.1, Ramakrishnan
K.G.2, Somashekar A.R.3
1Dr. Chandrika Rao, Professor, 2Dr. Ramakrishnan K.G, MBBS Intern, 3Dr.
Somashekar. A.R, Professor of Pediatrics, all authors are attached with
Department of Pediatrics, Ramaiah Medical College and Hospitals, MSR
Nagar, MSRIT Post, Bangalore – 560054, India
Address for
correspondence: Dr. Ramakrishnan K.G, Email:
ramakrishnankg.94@gmail.com
Abstract
Background:
Many children across the world, struggle with asthma, especially when
the condition worsens due to lack of adherence to treatment strategies,
the reason for which however may not be completely understood. Hence
the objective of the study is to explore the perceptions of caregivers
and patients about pediatric asthma and its control to trace possible
factors that lead to poor adherence to asthma control. Methods: A
qualitative study using conversational style interview for a group of 8
children and their guardians was conducted .In the discussion pre set
questions were put forward to explore the perceptions of care givers
and patients regarding asthma control management. The discussion was
recorded with consent and later transcribed, coded and analyzed. Results: The focus
group discussion revealed that patient compliance is not perfectly
maintained due to various factors. Patients have mixed responses to the
restrictions ranging from co-operative to rebellious behavior. Large
amount of anxiety exists among the parents with regards to the disease
exacerbation and long course of treatment. Frequent hospital visits
have been perceived to be cumbersome by them and they perceive a need
for the use of such questionnaires as a home based asthma control
monitoring system. Conclusion:
The focus group discussion reveals that proper counseling system and
home based asthma control monitoring system need to be put into place
to offer all round asthma control. Also use of questionnaires at home
on a regular basis will reduce the number of hospital visits saving
time and cost.
Key words:
Asthma control, Focus group, Pediatric asthma, Qualitative study
Manuscript received: 05th
July 2017, Reviewed:
15th July 2017
Author Corrected: 20th
July 2017, Accepted for
Publication: 30th July 2017
Introduction
The World health organization (WHO) recognizes asthma as a major health
problem that affects around 300 million individuals of all ages, ethnic
groups and countries. The estimated mean prevalence for the Indian
pediatric population is 7.24(SD 5.42), with urban and male predominance
[1]. Compared with adults, children had higher rates for asthma primary
care and emergency department visits [2].
Low adherence to inhaled medications leads to increased morbidity [3].
Non compliance to treatment occurs even when parents are supervising
care. Decisions regarding treatment are often made based on the opinion
of the family members, cultural beliefs and the child’s
tantrums. These affect adherence to therapy and can cause poor
compliance, one of the most common preventable causes of asthma
morbidity which is often overlooked in day to day practice. Since
reasons for poor adherence may not be fully understood it is important
to understand the perceptions of patients and their caregivers by
building a partnership with parents for long term management of asthma.
Focus group discussions are instrumental in bringing out these non
quantifiable aspects of patient care. Krueger describes focus group
discussions as carefully designed discussion to obtain perceptions on a
defined area of interest in a permissive non threatening environment
[4]. They have become increasingly popular in health care, especially
in the realm of need assessment [5]. It provides a platform for
parent/patient – physician interaction on a human level. It
is often more effective in drawing parents into discussion than one to
one interviews. Furthermore, researchers can look beyond numbers and
learn the meaning behind facts. Management of illnesses can be
revolutionized when the perceptions of the patients and care givers are
kept in mind while providing treatment. It also provides a platform to
recognize myths among patients and to instill and educate facts. There
by aiding well rounded management of the illness.
This study design hence will be suitable for exploring various factors
affecting asthma control.
The objectives of the study is to understand the quality of life of
children with asthma, to explore the perceptions of caregivers and
patients about asthma and its control and to trace possible factors
that lead to poor adherence to asthma control.
Materials
and Method
It was a qualitative study. The sample consisted of children of the age
group of 4-12 years visiting M.S Ramaiah hospital for treatment and
their care givers. The inclusion criteria included all children between
4-12 years of age diagnosed with asthma for at least 6 months. Children
newly diagnosed with asthma, or children with co existing co
morbidities were excluded. Ethical clearance was given by the
institutional scientific committee. Informed consent was taken from the
parents for the interrogation, discussion and the recording of the
discussion.
A focused group discussion for a group of 8 children and their
guardians was conducted. In the discussion pre set questions were put
forward to assess day to day problems of a patient, myths regarding
asthma, the difficulties in patient compliance to asthma control
management and the need for a more comprehensive home based asthma
control system. The discussion was continued till saturation- i.e when
additional conversation added nothing further to the subject. This was
later transcribed verbatim. A check list was devised to grade the
discussion. All transcripts were systematically analyzed. The open
codes were applied to the meaning and organized into categories and
themes.
Result
A focused group discussion was conducted for a group of 8 patients and
their parents. The patients were known cases of Asthma from a period of
six months to up to seven years.
Knowledge about the
disease
“What is asthma?”
When asked about what asthma is to patients and their care givers, they
couldn’t explain the actual pathology behind asthma i.e
broncho constriction but rather expressed the symptoms they associated
with the disease. The general symptoms the group complained of were
nasal itching, cough, breathlessness and wheezing.
“When does it increase?”
When asked for precipitating factors or aggravating factors; one of the
patients complained that consumption of chocolates was the cause, while
most others complained about consumption of fruits and oily food
substances. One patient stated that the problem started on
discontinuation of breast feeding.
“Which season do these problems become worse in?”
Questions directed to seasonal variation brought about a response that
asthma symptoms are increased / present only during winter and the same
was agreed by all. They discussed the improvement in warm climate.
Personal preventive measures
“What do you do to prevent asthma attack?”
The next question asked was regarding the day to day personal
precaution measures for which patients gave a wide array of answers.
One patient asserted on the fact that diet restriction is the most
important measure ,which ranges from restriction of consumption of
chocolates ,non-vegetarian food substances or oily food to prevention
of food consumption from bakeries and other eateries. Another patient
stressed on the fact that `only hot water` should be consumed. Steam
inhalation and gargling is the strategy during cold winter. Use of warm
clothes is given a lot of importance by the patients and some patients
also felt that yoga and pranayama or evening walks strengthen the
lungs.
Patient compliance to
preventive measures
“Do you face difficulties in making your children adhere to
treatment and prevention strategies?”
The next question was on patient compliance to medication which brought
out multiple responses from the care givers of the patients. The parent
of two asthmatic children stated that `the older child listen to us and
are co-operative to all the restrictions but the younger one as he has
seen the experience of his brother follows the instruction but is not
very co-operative`. The care giver also said that at young age the
patients are more compliant to the restrictions and precautionary
measures but as they grew older they compliance reduces and extra
pressure needs to be added. As stated by her “He used to wear
warm clothes voluntarily in child hood but now since he is in high
school he feels awkward and refuses to wear warm clothing”.
Another parent stated “how long will children listen to us
and follow a restrictive life? They reach a breaking point”.
On the other hand one care giver stated this with regards to her
daughter “she is very mature and follows restrictions on her
own but the temptation to eat outside food creeps in and she gives in
to the temptation and buys food from outside when she is not
supervised”. The care giver of another child said that peer
pressure makes the child non-compliant and makes her attend social
gatherings where she doesn’t follow the diet restriction. A
patient’s resistance to the restrictions is so severe in one
case, where as stated by the patient, “the patient hits her
head on the floor in grief that she is not able to lead a life like
others and eat what every other children eat”. The care
givers also expressed the difference in thought among the parents of a
child with respect to the restrictions. As stated by one patient
“if I restrict her from eating something her father secretly
gives her the same and she lands up with symptoms”. Another
patient expressed that the father of the child is against these
restrictions because he wants his only child to enjoy his childhood.
One of the care givers also complained about non cooperative neighbors
who increase dust and smoke, precipitating asthma symptoms in the
patient.
Perspectives of the care
givers regarding medication:
“How important are medications?”
The question that followed was regarding the patients’ and
parents’ perspective of importance of medication. The overall
opinion of parents is that medication is inevitable. But one parent
feels that the medication doesn’t reach optimal use because
of poor environment and pollution. Another parent is frightened and
depressed that during attacks even medications cannot control the
asthma symptoms. However, in this part of discussion a parent put
forward a question rather a misconception that whether the use of an
inhaler without a spacer worsens the condition of patient.
There was a common belief amongst the parents that following preventive
measures and taking medications in childhood would cure the disease and
prevent it from continuing to adulthood.
“Do you use medicines from alternate systems of health
care?”
The next question put forward was the use of alternate forms of
medicine. All parents agreed that there is excessive pressure from
family and friends to start the child on other forms of medication but
none of the parents venture into these medications they feel
“child’s health is most important”. One
caregiver said “I put my child on Ayurvedic treatment because
of family pressure but shifted over to English medicine (Allopathy) as
it offers quick relief”.
Restrictions in day to
day life
“How is your child’s day to day life affected by
asthma?”
The next question was directed to bring out feelings of patients and
parents with respect to restriction of day to day life due to the
disease and restriction to extracurricular activities. All parents
agree that their children’s life has been restricted to a
large extent. One parent says `he is very interested in sports but what
to do, he can’t take part in anything’. Another
parent complains that her son has been prohibited from doing any
extracurricular activities by the school as the school has been
directed to do so by the father of the child. This makes the child very
depressed. Another patients’ care giver stated “the
aunt of the patient had same problem which got cured by the time she
reached adolescence. So I think restrictions are good as she might get
cured like her aunt.’
The question that followed addressed the parents’ / care
givers’ reaction to night symptoms. One parent started to
cry, she says it is so frequent and is very scary sometime. Another
parent who lives far away from the hospital says `I am helpless when
this occurs. I have to wait till next morning, I feel very sad that
with so many medications these things recur’.
Burden of continuous
asthma control surveillance
“What do you feel about the need to make repeated hospital
visits?”
The most distressing part of asthma management is that it can be only
controlled and not cured. So the next question was phrased to bring out
the reactions of parents to this continuous need to make frequent
hospital visits. The response from one parent was that “yes,
she has to miss school as check-up time clashes with school hours, as a
result of which lot of work piles up and there is extra stress on her
but she has to cope with it. There is no other go”.
Two questionnaires the C-ACT and ATAQ were introduced and its utility
was explained to the group. The idea of using them as a home based
asthma control evaluation system was introduced. The patients were told
how it works and how warning signs were to be looked for. At the end of
this, the patients were asked whether they would trust such
questionnaires and use it as a method for evaluation, rather than
making frequent hospital visits, unless the need to visit hospital
arises. In response all patients nod their heads in agreement and some
parents said such a system is very efficacious as it would save them
the trouble of hospital visits and they assert that it should be put to
practice.
The focus group was concluded by answering questions put forward by the
patients and addressing the myths that arose.
Analysis of the focus group discussion lead to four dominant themes and
are summarized as follows.
The factors leading to poor adherence to treatment and exacerbation
prevention strategies are:
• Difficult to convince children
and control them as they grow older and symptoms begin to resolve.
• Peer pressure causes poor
compliance to treatment and asthma exacerbation prevention strategies.
• Tantrums are common among
younger children while leading a restricted life.
• Conflict between family
members or parents resulting from different perceptions of preventive
measures.
• Family pressure to discontinue
allopathic medications.
• Pampering by the elderly of
the family leads to straying from these preventive measures.
• Poor environment around home
as a result of non co-operative neighbors.
• Lack of clear knowledge about
the disease.
The factors favoring good adherence to treatment and exacerbation
prevention strategies are:
• Fair amount knowledge
regarding symptoms and seasonal variations amongst caregivers, hence
helpful to monitor and detect poor control and exacerbations
• Good appreciation of the
importance and requirement of medication.
• Good adherence to a single
system of health care.
• Good knowledge regarding
personal preventive measures
• Examples of asthmatics with
good control in and around home to aid as an inspiration to adhere to
the treatment and exacerbation prevention strategies.
• Positive attitude regarding
health, as a parent says “Child’s health is most
important”.
The Effects of asthma in day to day life :
• Living a restricted childhood
leads to frustration in children.
• Exacerbation and regular
visits to the clinics causes loss of school time leading to backlog in
academics.
• Participation in sports and
other extra cultural activities are often limited.
• Parents lose work time because
of the need for regular hospital visits
• Fear and helplessness among
parents during exacerbation and due to the (large) distance from health
care facility.
The problems parents face in the process of achieving asthma control:
• Difficulty in making children
compliant to treatment, especially older, who are under constant peer
pressure.
• Frustration in children
manifesting as tantrums are hard to control and difficult to handle.
• Parents feel a loss of control
in social gatherings, hence giving room for straying from the asthma
control strategies.
• Family pressure, especially to
try treatment from alternate systems of medicine like ayurveda.
• Parents feel helplessness and
immense fear during exacerbation in the night time.
• Parents have a difficult time
bridging the distance between home and the health care facility.
• Parents raised a concern that
if spacers aren’t used for inhaled medication the problem
will actually worsen.
Discussion
Parents play a pivotal role in the management of their
child’s asthma. They make the primary decision on medical
advice given for their child’s condition. This parental
deci¬sion is based on their own perceptions about illness and
medication [6]. Focus group discussions bring out the wider
understanding at community level, along with their personal
understanding. Hence this qualitative study was aimed at exploring
these varied perceptions through focus group discussion which possibly
could be a cause for lack of adherence to treatment.
Through the study it was discovered that the knowledge of parents
regarding the disease was limited to the symptoms they observed and the
underlying cause was largely unknown to them, which could have a
bearing on how they approach long term treatment. This is similar to
the findings in the study conducted by Rachel C et al, where mothers
from different ethnic backgrounds described asthma primarily in terms
of the symptoms they saw [7]. However in the study done by Wern F et
al, asthma was thought to be infectious spreading from one person to
another, this was not observed in the current study [8]. Furthermore
parents express fear, anxiety and helplessness during acute attacks.
This is a common observation as seen in many previous studies [7- 10].
In the current study it was also observed that the fear is worsened due
to the distance of health care centers from home, especially during
acute exacerbation. Another unique observation in this study is the
discord between the father and mother regarding the disease and its
management, hampering optimal asthma control. This could be attributed
to the lack of knowledge and brings out the need to counsel and educate
both parents about the disease.
Another common concern among parents is the effect of peer pressure and
its effects on compliance to treatment and adherence to measures
preventing acute attacks. Parents feel that once their children grow
older they express their preferences. This is often worsened in social
gatherings and trips and is viewed as an embarrassment by the child.
This is an observation unique to the study. Further they express that
some children become frustrated and throw tantrums when made to adhere
to treatment strategies. This frustration is further worsened when they
feel restricted due to the disease not enabling them to enjoy their
favorite food or take part in sports activities making them non
compliant in the long run as has also been noted in the study conducted
by M Jhonson et al [10]. Hence children should be counseled and
educated regarding the importance of compliance. They should be trained
to cope with limitations brought by asthma which would possibly reduce
when asthma is well controlled.
Parents feel adherence to strict dietary restrictions is equally
important in management of asthma which is similar to the observation
in the study conducted by Cane et al [7], [8][11]. However, the extent
of its benefit has to be verified. Parents also recognize that the
surrounding environmental has a bearing on their child's health as
mentioned in other studies [12].
In the adult population, patients with asthma took into consideration
the cost of therapy, which affected adherence to asthma control therapy
as demonstrated by the study conducted by Dianne P et al [13]. This
factor however was not seen in the pediatric population as parents had
high regard and concern for their children’s health.
Overall parents show a keen interest in their child’s health
and value it deeply. As mentioned by a parent
“child’s health is most important”. This
forms a good soil for re enforcing the importance of adherence and
close follow up.
As demonstrated by the study, focus group discussions are effective in
bringing forwards perceptions and inner most thoughts of parents and
caregivers which are otherwise often missed out on in routine clinical
care. Parents are able to communicate their major concerns well and
their emotions are brought out through these focus groups. Furthermore,
as demonstrated in the present study and the study conducted by William
B et al, it provides an opportunity for parents to view the perceptions
of others and sympathize with them, which can be an enriching
experience in itself [14]. However such discussions are prone to be
steered by dominant members as was observed in this discussion too. Not
only do these studies enable patient physician relationships they also
work as an effective research tool. Large amount of data can be
collected over a short period of time and unique aspects of patient
care can be touched upon [15]. A careful selection of participants and
a tactful structuring of discussion can make it a resourceful way of
exploring the various qualitative aspects of diseases and their
management.
The strengths of the study are that parents of these young asthmatics
showed good enthusiasm to take part in the discussion. One positive
feature was the interaction between parents regarding their
children’s problems. Parents listened intently while other
parents spoke and often added to their points and sympathized with
them. This interaction continued even after the focus group was
concluded. This feature of focus groups is as described in a study
conducted by Morgan DL et al [16].
The limitations were that the study design did not pay attention to
selecting groups based on social-economic, demographic and linguistic
factors. This would have enabled smoother interactions and an insight
to problems specific to different groups of the society.
India being a culturally diverse country posed its own challenges to
the study. Since there was linguistic diversity in the group, not all
of them were able to optimally communicate their perceptions and
concerns in the chosen language of discussion with the doctors and each
other.
India with the concept of joint families still widely prevalent opens
us to the possibilities of the effect of compliance of other family
members. While it did provide examples of asthmatics who have achieved
control to live up to, it also brought with it the lack of compliance
induced by the pampering of the asthmatics by elderly and their view of
asthma management and its effects on childhood. In such situations
since parents loose absolute control and counseling of other family
members becomes essential.
Another problem unique to India is the prevalence of a range of
alternative systems of medicine. This not only confuses parents but
also becomes a source of pressure in deciding the right method of
treatment accentuated by family members who urge parents to try
alternative medicines.
Conclusion
The qualitative analysis reveals that asthma care requires an overall
management and close follow up of the patient in addition to
medications and precautionary measures .Detailed counseling to the
patients and caregivers about various aspects of the disease and the
need for following precautionary measures is absolutely necessary.
Parents can be taught basic quick relief strategies or treatment to
reduce anxiety during attacks. Also a home based monitoring system
should be established such that, patients once off medication after
achieving desirable asthma control can monitor it on a regular basis
and visit hospitals only when the questionnaire indicates uncontrolled
asthma. This spares a lot of time and resources for the patient and the
doctor and reduces anxiety among the care givers.
Focus group discussion proves to be an useful tool for qualitative data
collection and also acts as a temporary support group for the parents.
Acknowledgements-
The institution and its scientific committee have played a fundamental
role in providing us the opportunity and encouragement to perform this
research work. We thank Dr Roopakala, Secretary of student research
committee for scientific advice through the process. We extend a heart
filled gratitude to Dr. Karunakar, head of Department of Pediatrics for
the constant support and encouragement. A special thanks to Mrs
Radhika, statistician for technical support on statistics. No
acknowledgement is complete without thanking the patients and
caregivers who actively took part in the research work.
Funding:
Nil, Conflict of
interest: None initiated
Permission from IRB:
Yes
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How to cite this article?
Patterns of health care for children with asthma: A qualitative study.
Rao C., Ramakrishnan K.G., Somashekar A. R. J
PediatrRes.2017;4(07):446-452.doi:10.17511/ijpr.2017.07.03.