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100 The Bangkok Medical Journal Vol. 15, No. 1; February 2019
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The Bangkok Medical Journal Vol. 15, No.1; February 2019
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100 The Bangkok Medical Journal Vol. 15, No. 1; February 2019
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Review Article
Nedruetai Punaglom
Nedruetai Punaglom, RN, PhD(Student) ; Puangpaka Kongvattananon, RN, PhD ; Chomchuen Somprasert, RN PhD
Experience of Parents Caring for Their Children with Thalassemia:
Challenges and Issues for Integrative Review
Parents are important primary caregivers as they are the key
individuals who take on the crucial role of caring for children with
thalassemia.1 Thalassemia is a severe chronic inherited disorder of globin
synthesis in which the production of globin chains is partially or
completely suppressed. This abnormality requires long-term treatment and
signicant treatments for thalassemia are blood transfusions and iron
chelating therapies. Children with thalassemia encounter the impacts from
this inherited disease and its treatment and they need to continue to receive
care throughout their childhood from their parents.2,3 In addition, parents
encounter multiple challenges that affect their quality of life when caring
for their children with thalassemia.4,5 In fact, the child’s quality of life
depends largely on the corresponding parents’ quality of life. Therefore, if
parents are overwhelmed by caring for their children, without being
provided the support system necessary to solve their problems, this in turn
can also adversely affect the quality of life for children with thalassemia.
The empirical studies searched from January 1st, 2009 to March 1st,
2018, showed that many studies illustrated parents’ experiences, and
comprised: physical distress such as sleep problems, weakness, fatigue,
failing to take care of oneself, loss of good health; psychological distress
such as anxiety, worry about their child’s condition and their future, stress,
guilt, uncertainty; social distress such as loss of social activity, social
alienation, social death; and spiritual distress such as hopelessness,
inexpressible wishes of having an ideal society, stigmatization etc.6-10
Similarly, in a quantitative study of the burden of caregivers for children
with thalassemia9 it was found that 66 % of parents reported they had no
happiness in their lives and 82% of them revealed concerns for their child’s
future.
In addition, culture and context in each area of the study is an
inuential factor on parents’ experiences.11,12 For example, there is the study
on Southeast Asian and Asian Indian parents of children with thalassemia
who lived in the United states.13 The research results showed that the parents
Abstract
This integrative review aimed to synthesize the experience of parents caring for their
children with thalassemia. An integrative review of qualitative studies was conducted
regarding the experience of parents caring for their children with thalassemia, and
MEDLINE, PsycINFO, SCOPUS, and CINAHL databases were searched from January
1st, 2009 to March 1st, 2018. Five studies involving participants were included. Children
with thalassemia affect their parents’ lives and perspectives. The six themes identied
comprised: concern about children in the future, social death and stigmatization, absent
support network, psychological distress, frustration with treatment, and the need for good
coping strategies. This integrative review was designed to provide a better understanding
of the experience of parents caring for their children with thalassemia. From the core
themes, this integrative review led to an evidence-based practice for supporting and
managing their condition effectively. Further studies should focus on how to support
parents taking care of children with thalassemia.
Keywords :
parents’ experience, children with thalassemia, integrative review
Faculty of Nursing, Thammasat University,
Thailand,
* Address Correspondence to author:
Nedruetai Punaglom, RN,PhD (Student)
Faculty of Nursing, Thammasat University
99 Klong1, Khlong Neung, Khlong Luang,
Pathumthani 12121, Thailand.
email: nedruetai@npu.ac.th
Received: May 22, 2018
Revision received: May 30, 2018
Accepted after revision: July 10, 2018
BKK Med J 2019;15(1): 100-106.
DOI: 10.31524/bkkmedj.2019.02.018
www.bangkokmedjournal.com
100 The Bangkok Medical Journal Vol. 15, No. 1; February 2019
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The Bangkok Medical Journal Vol. 15, No.1; February 2019
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100 The Bangkok Medical Journal Vol. 15, No. 1; February 2019
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Nedruetai Punaglom, RN, PhD(Student) ; Puangpaka Kongvattananon, RN, PhD ; Chomchuen Somprasert, RN PhD
not only suffered from caring for their child, it also found that
these parents encountered many obstacles to access health care
service systems. This was due to limitations around language,
lack of health insurance etc. Furthermore, to some context in
Iran,8 parents reported their stigma and social death from the
inaccurate beliefs about the cause of chronic inherited
illnesses like thalassemia. False beliefs held by people in
society led to parents being seen as disgusting and being
excluded from society. For the most part, nancial burden was
acknowledged to be one of the challenges parents faced due
to exorbitant treatment expenses and other expenses incurred
from caring for their child (such as traveling to hospital, and
parents’ daily expenses for taking care of their child during
hospitalization etc).7-10 This demonstrates that there is a need
for health care providers to understand parents’ experiences
as there might be both similarities and differences in points of
concern and vulnerable issues in each area.
This understanding would be useful to improve our
comprehensive understanding of parents’ experiences and to
better promote quality of life for parents and for their children
with thalassemia who rely on parental care. The literature
review showed similar and different results on the topic of this
integrative review. Therefore, this integrative review will help
the researcher to synthesize knowledge about parents’
experiences who care for their children with thalassemia and
will provide a perception of these experiences with the aim of
improving healthcare practice.
Aim of this review
The purpose of this integrative review was to synthesize
parents’ experiences caring for children with thalassemia.
Method
Design and search strategy
PRISMA’s systematic reviews for examining and
unifying literature was utilized.14 MEDLINE, PsycINFO,
SCOPUS, and CINAHL were searched from January 1st, 2009
to March 1st, 2018. The keywords used were ‘parent’,
‘parents’, ‘mother’, ‘father’, ‘perception’, ‘perspective’, ‘view’
‘experience’, ‘caring’, thalassemia’, ‘children’, ‘child’, ‘baby’.
Relevant research articles were retrieved from the database
suggestions. Journal articles were included in this review if
they:
1. Were articles published between 2009 to 2018.
2. Were available in English.
3. Were primary qualitative research studies.
4.
Involved optional and mandatory parents’ experiences
caring for children with thalassemia.
5. Were limited to those involving parents, mother or
father with one child or more with thalassemia for
at least 6 months to 1 year.
6. Were concerning children who had received
treatment for thalassemia including blood transfusion
s
and iron chelation therapy.
Data extraction and synthesis
A thematic synthesis was used for this integrative review
to collate the ndings.15 Data extraction and synthesis
information were based on objective, sample and setting,
methodology, gathering of data, data analysis, conclusions,
strengths and limitations and future implications.
Strategies to enhance rigor in integrative reviews
The PRISMA statement consisted of a 27-item checklist
and 4 phase ow diagram to meet the standard reporting of a
systemic review with rigor. The PRISMA’s framework was
designed for a systematic review and meta-analysis. However,
in terms of an integrative review, this method was a challenge
in combining multiple data sources. Therefore, an integrative
review was chosen with an integration concept with samples
provided of all the processes applied and illustrated by
PRISMA.
Data Abstraction/ data evaluation
The empirical report included types of methodology in
qualitative research and consisted of ve qualitative
approaches. According to the data evaluation of PRISMA, they
described the evaluation in overall terms of quality. The author
chose from 628 articles and determined the exclusion criteria
as follows: no full text, no qualitative approach, not in English,
published more than 10 years ago, considered a duplicate,
representative of primary data sources and/ or irrelevant.
Finally, the author identied 5 articles that met the criteria set
out to answer the research questions of this study. A total of
623 articles were removed and 5 articles were selected from
at least 98 articles on parents’ experiences caring for children
with thalassemia. Data were collected from focus groups,
semi-structured and face-to-face interviews conducted in
Jordan, Iran, Malaysia, and The United States. (Table 1)
Results
Six themes were identied: concern about children in
the future; social death and stigmatization; absence of support
network; psychological distress; frustration with treatment
and; the need for good coping strategies. Details as follows:
Concern about children in the future: parents showed
great concern about their children’s future due to the parents’
awareness of the impacts of thalassemia and its treatment. This
includes a gradual worsening of the condition in children with
thalassemia. This then leads to the parents’ heightened concern
about their children’s future including factors such as progression
of the disease, concern about treatment and complications,
children’s education, job, employment and life prospects,
developmental growth, delayed menses, self and body image,
marriage and starting a family. As an example, in the words
of parents:
Experience of Parents Caring for Their Children with Thalassemia: Challenges and Issues for Integrative Review
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Table 1: The relevant selected articles followed PEO format for qualitative research.16
Author, Year Population Exposure Outcome or themes
Liem et al., 201113
Wahab et al., 201117
Shahraki-vahed et al.,
201718
Pouraboli et al., 20178
Shosha et al., 201810
14 Southeast Asian
and Asian Indian
parents of children
with thalassemia.
24 parents of children
with thalassemia.
15 parents of children
with thalassemia.
22 parents of children
with thalassemia.
23 mothers of children
with thalassemia.
To describe the challenges,
including sociocultural and
socioeconomic barriers, faced by
an urban immigrant population in
the United States affected by
thalassemia.
To explore the concerns, beliefs
and feelings about thalassemia.
To explore the experience of
parents of children with
thalassemia.
To explore the experiences of
parents who have children with
thalassemia.
To explore challenges facing
Jordanian mothers when having a
child with thalassemia.
1) Impact of thalassemia on parent, affected
child and family
2) Sociocultural and socioeconomic
barriers to health care access
3) Family and social support network and
coping mechanism
1) Concerns
2) Treatment
3) Coping mechanisms
1) Gray marriage consanguinity
2) Burdened with increased number of
thalassemia children
3) Socio-familial worries
4) Inexpressible wishes for having an ideal
society
1) Immersion in suffering
2) Stigma and social death
3) Uncertainty about future
4) Absence of a support network
1) Unprecedented psychosocial distress
2)Additionalnancialburden
3)Deciencyofknowledgeanditssource
RecordsidentiedthroughCINAHL,
PsycINFO, PubMed, and Scopus
(n = 1,271)
Additionalrecordsidentiedthrough
other resources
(n = 5)
Records after duplicates removed
(n = 628)
Studies included in the synthesis
(n = 5)
Records screened
(n = 628)
Identification
ScreeningEligibilityIncluded
Records excluded based on titles and
abstracts due to the following reasons:
(n = 601)
1. Not written in English
2. Quantitative research
3. Commentaries, letter, news article,
review, clinical practice guideline
4. Full-text unavailable
5. Editorial
Full-text articles excluded due to the
following reasons: (n = 21)
1. No concepts relating to parents’
experiences
2.Specicpopulationswereextremely
limited
3.Insufcientinformationforcritical
appraisal
Full-text articles assessed for
eligibility
(n = 27)
Figure 1: PRISMA ow diagram on the outcomes of search strategies.
Punaglom N, et al.
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“Life was full of problems, when you had [sic]the chil-
dren with thalassemia, the problems were complex. As children
got older, when they grew up, they need the job, life and mar-
riage. When I thought about these topics, my body starts
trembling. My son was a slow student, he suffered from many
educational problems. The teacher complained him when he
didn’ t do his homework, he was [sic] encountered with many
problems.” 18
“Her friends had all obtained menstruation, why had
they had their menses but my child had not? When she asked
me. Why she had not gotten her period. Why not? I did not
know how should [sic] will I talk to her (Group 3 – parent)” 17
“Last week, I heard this girl got engaged and the man
didn’t know she had thalassemia. When the man knew, he did
not want to marry her. (R.U., father, Pakistani)” 13
Social death and Stigmatization: the parents spent more
time providing continual care for their children and this
affected the parents as they no longer visited their relatives as
often, nor did they have the chance to participate in social
activities. Furthermore, in some areas it was shown that parents
suffered from a lack of real understanding or from misconceptions
about the cause of thalassemia in others. The inaccurate belief
of their community about thalassemia led some people in the
community to cast blame and some treated the children and
their parents like criminals or implied they were punished by
God. This impacted parents, with some concealing their child’s
illness, and others refusing to participate or discuss their
children with thalassemia with others. Unfortunately, some
parents experienced exclusion or stopped having a relationship
with their relative altogether. As an example, in the words of
parents:
“I’m away from my friend because I did not have time,
I’m really busy…I need to stay beside my son …he was very
important for me more than my friends.” 10
“People treated [us] unwisely and stigmatize us. They
talked about my child’s illness unfairly... Unfortunately, that
was how they viewed thalassemia and blamed this disease.” 10
“I usually did not tell anyone about it besides our fam-
ily, because of somebody who didn’t know us but they heard
from rumors that my kids had thalassemia and they thought
that I had disease. ‘Oh, she had AIDS, HIV’.” 13
Absence of a support network: the parents reected on
their experiences caring for children with thalassemia and
spoke of an absence of support networks. In addition, they
lacked information about thalassemia, felt social isolation, and
an absence of professional and health care system support, and
nancial support.
Absence of information about thalassemia: parents
reected on the absence of information on thalassemia such
as: the causes of the disease; treatments, and its side effects
and; lack of information to enhance the parents’ role in caring
for their child/children. As a result, parents could not interpret
many of the clinical signs and symptoms of thalassemia and
parents found it difcult when confronted with unpleasant
symptoms experienced by their child/children. As an example,
in the words of parents:
“I didn’t understand exactly what thalassemia was. At
the rst time, the doctor told me that my child had anemia and
asked me if I had thalassemia and I answered no . . . the doctor
told me that thalassemia was an inherited disorder . . . but I
did not know really what the doctor meant. (Participant 14)” 10
“Sometimes I asked nurses and doctors about my son’s
problems, but . . . they were busy. (Participant 8)” 10
“I could not just travel due to many restrictions, including
where to go to attach the blood bags and if he felt bad, what
I should do, these all were limitations.” 18
Absence of social, professional and health care system
support: parents of children with thalassemia were confronted
with social alienation due to inaccurate belief and superstition
about the causes of the disease. This adversely affected parents
who felt loneliness and helplessness. In addition, some parents
experienced an absence of professional support and deciencies
in health care systems. For instance, inadequate expertise of
the healthcare team, insufciently equipped healthcare team
and also not enough experienced nurses in intravenous lines
administration. This led to parents feeling dissatised . As an
example, in the words of parents:
“We need advice or counseling sessions by an expert.
We would be angry because he would not listen to us.” 17
“Lack of supportive behaviors in health care personnel
and lack of holistic care for supporting the families might
reect many obstacles that required effective ways to cope with
many challenges [sic] issue.” 8
Absence of nancial support: parents worried about lack
of nancial support because of the characteristics of
thalassemia that require continuous long-term treatment
throughout their children’s lives. This means, parents need to
spend a lot of money to cover the cost of transportation when
visiting hospital for follow-ups or for blood transfusions, the
cost of special food requirements and relaxation activities to
decrease tension and anxiety of children. Meanwhile, parents
often had to leave their jobs to take children to hospital and
this was a nancial burden. As an example, in the words of
parents:
“I need to pay for the cost of transportation or need to
pay for the taxi every time when I took [sic] my child to
hospital and I also need to buy special diet for my child.” 10
“Sometimes, I did not have a single cent of money in my
pocket to pay for the taxi. But since my child had an
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appointment I had to take her to hospital. When she was on
blood transfusion she told me, she was hungry. I cried and was
feeling very sad as I had no money in my pocket.” 17
Psychological distress: parents’ psychological distress
occurred for the rst time when parents became aware of the
diagnosis of their child’s thalassemia. They felt shock, disbelief,
and sadness. After that, signs and symptoms caused by
pathophysiology of thalassemia showing in their child
included the effects of its treatments that their child encountered.
These included fatigue, exhaustion, failure to thrive, easy to
fall prey to infection due to low immunity, growth and delayed
secondary characteristics, body changes, body image, suffering
from such treatments as drilling blood, blood transfusion, iron
chelation, loss of activities with peer group, school absenteeism
etc. This created tension on the part of the parents. Furthermore,
parents reected on problems that occurred within the family
related to having children with thalassemia as parents tended
to spend more time taking care of children with thalassemia
when compared with other children. The sick child’s condition
increased the feeling of love towards children with thalassemia
and this in turn created a feeling of discrimination and
jealousy among the other children. Moreover, in some parts
of this study where there was a high prevalence rate of
thalassemia caused by consanguinity through marriage, parents
felt guilty because they perceived themselves as the cause of
illness in their child. Finally, parents were also concerned that
healthy female children within the family may lose their
opportunity of having a happy marriage as prospective
husbands may choose not to marry them because they are part
of a family with thalassemia. These factors adversely affected
parents and caused tremendous psychological distress. As an
example, in the words of parents:
“After Dr. A informed us about our child diagnosis with
thalassemia. I did not belief [sic] him, I felt shock. We went to
another hospital to conrm the result...My child asked me why
Mr. B’s son was taller than me. Why had he grown more than
me? Why did I have to receive frequent blood transfusion and
my sister not? These questions indeed hurt me.” 8
“I am very sad; it is a true disaster when I saw my son
in pain and unlike other boys. (Participant 3)” 10
“It scared me so much. I also had a healthy child that
I [was] concerned she might lose her opportunity in her
marriage life because [she] did not have the man [who] wants
to marry her after [he] saw the sick child in the family.” 18
“There were many problems involved with kept [sic]
healthy child besides the sick child. Some of the problems were
involved to parents and some to the child; Diet problems and
preparing separate meals for the sick child, paying attention
to the special needs of these children, different [sic] of skin
color appearance and change in their facial shape, when
compared with that of the healthy one, these were all
problems.” 18
Frustration with treatment: parents reected on their
frustration with treatment which had occurred in the past and
was still ongoing in the present, in particular concerning
ineffective health care systems that could not prevent the birth
of children with thalassemia. There was also the inadequacy
of the thalassemia diagnostic test in the past that led to having
the children with thalassemia. Therefore, parents now had to
suffer, having to purchase blood for required blood transfusions
for their children with thalassemia. Moreover, some parents
shared their experience of not having access to a desferal pump
and medications that affected the children who then received
ineffective treatment since they were forced to share one
desferal pump with other patients. In addition, some parents
reported issues with access to health care systems such as
living in remote areas. This meant parents faced difculties in
travelling to the hospital, and some parents had to move to
another city in order to be close to the thalassemia center.
Barriers encountered also included language limitations of
certain groups in society. As an example, in the words of
parents:
“I was usually seeking for someone who could donate
blood for my child. I donated my own blood several times.
Some soldiers were ready to sell their blood. I had to nd them
to pay for and purchase their blood.” 8
“Our English skills were adequate for communication
in every day. However, we felt difculty to understand medical
terminology when the conversation [was] with the healthcare
team” 13
The need for good coping strategies: parents tried to
cope with their suffering arising from caring for their children.
The coping strategies focused on improving their children’s
lives and well-being. Parents tried to search for information
about thalassemia through communication with physicians and
nurses, they tried to cope with self-education, tried to instill a
sense of normality in their children, and tried to trust in their
faith and religion to maintain their hope for treatment. As an
example, in the words of parents:
“It never affected her. I treated her as a normal child.
I always told my family that, ‘you did not need to be pity her’.
Since my daughter was a child, as she was growing up, I kept
telling her about her disease, what was wrong with her, and
she had taken it very good.’’ 13
“But most of all, I put the most of my trust in God
because he could do miracles that no doctors out here could
do. And so, I believed we went through life…most of our
suffering, most of the things we went through made us stronger
spiritually and as a person.’’ (B.R., mother, Hmong)” 13
“I was able to cope with my problems through strong
faith in my religion. I was Muslim. I believed in the Qada’ and
Qadar to deal with my suffering. I was hopeful that one day
my child would be cured of their disease.” 17
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Discussion
The synthesis results identied six themes: concern
about children in the future; social death and stigmatization;
absence of support network; psychological distress; frustration
with treatment, and; the need for good coping strategies.
However, we re-conceptualized all of the themes to consider
the latent signicant challenges and issues within the themes
that were shown. We identied two important points:
psychosocial and nancial problems. Both need to be
considered to enhance the potential ability of parents who care
for their children with thalassemia.
The author found that psychosocial problems were
signicant in the synthesis of the articles. In brief, the results
from all of the articles in this integrative review showed
psychosocial problems parents faced from caring for their
children with thalassemia. These problems were caused by
many factors such as disease, treatment and its side effect,
life-changing impact in the day-to-day social activities of the
parents, the sick child and their sibling/s. All of these
reected the source of the problem and the parents’ need for
support to alleviate their suffering.19-22 Suggestions arising
from this integrative review have been outlined to help
develop a holistic nursing intervention8 to support parents and
to promote the potential ability of parents to cope with their
suffering successfully. Programs could include the promotion
of parents’ role in taking care of their children, and the
development of a thalassemia database to share necessary
information through digital technology. One example, is setting
up a Line group connecting parents of children with thalassemia
as a useful channel for them to immediately access information
they want.23 In addition, genetic counseling programs were
added to this integrative review. The goal of genetic counseling
was to promote a better understanding of the consequences of
the disease, increasing knowledge of the risk of disease or
transmission of disease, reducing anxiety, making the right
choices, nding ways to prevent the transmission of
abnormalities to children and to make informed decisions about
family planning. In brief, genetic counseling was an important
nursing intervention to help parents to alleviate suffering and
to nd different ways to solve their problems. Finally, genetic
counseling was seen an important strategy of the health care
system to decrease the incidence rate of new patients. 17,24
However, the author found that one of the most crucial
issues was social death and stigmatization, and this was
prevalent in the study in Iran.8 People in society believed
thalassemia was caused by a supernatural power or was a
punishment from God, or because someone had done
something wrong against the norms of society. These views
were reected in most of the people in Iran, who still lacked
informed knowledge about thalassemia. This led to the child
and families being criticized by society resulting in social
death. Families had to conceal their child’s illness. The study
also reected the disparity in society, and this needs to be
resolved urgently by all parties in order to allow children and
families to live in society with dignity and well-being. Due to
these challenging issues, parents still faced limitations in terms
of their vulnerability related to belief and social values. Therefore,
further study is needed to better understand this vulnerability
with an ethnographic research as an approach to reach the
required research questions. After that, the information gained
from a qualitative approach could be used to construct an
appropriate nursing intervention to promote a proper
understanding of the disease to people in society.
Financial problems seemed to be a universal cause of
suffering of parents with children with thalassemia since the
disease requires prolonged care and treatment and frequent
hospitalization. It was the greatest problem seen, especially
among parents in the lower socio-economic group.9,13,18 This
reects the need for nancial support as a necessary factor to
help parents to reduce suffering from caring for their child and
to promote the quality of care and the quality of life in both
the parents and their child. Therefore, nancial support should
be considered by policymakers, at least in the form of health
insurance, to be determined as a health right for citizens to
alleviate the parents’ suffering arising from caring for their
children with thalassemia.25 Moreover, most of the studies
raised unemployment as one of the burdens facing parents as
they frequently needed to take leave from their jobs to take
their child to hospital.17 Therefore, policymakers should
cooperate with employers to determine guidelines to help
parents.
This study looked at how health care providers need to
help parents to cope with their lives by applying specic
strategies. These include: promoting the caring role of parents;
developing a thalassemia database; implementing a genetic
counseling program and; policymakers creating appropriate
health insurance policies. Further study is needed to understand
some topics where the understanding is still limited to help
healthcare providers to provide the appropriate nursing
intervention to alleviate parents’ suffering. Moreover, these
nursing interventions should integrate a holistic approach
particularly when it comes to the relevant issues of religion,
belief, and society’s values.26
Conclusion
According to the results of this integrative review,
parents of children with thalassemia faced many challenges
arising from caring for their child. These comprised concern
about children in the future, social death and stigmatization,
absence of support networks, psychological distress, frustration
with treatment, and the need for good coping strategies. These
results show that health care providers should be concerned
with the suffering of parents who care for children with
thalassemia. This is because parents are crucial and play an
important role in providing quality care for their child.
Therefore, to attain a better quality of life for both parents and
their children, health care providers should provide the
appropriate holistic nursing care or interventions to alleviate
suffering. They should provide the appropriate support
program for challenges and issues in caring for children with
Experience of Parents Caring for Their Children with Thalassemia: Challenges and Issues for Integrative Review
106 The Bangkok Medical Journal Vol. 15, No. 1; February 2019
ISSN 2287-0237 (online)/ 2287-9674 (print)
The Bangkok Medical Journal Vol. 15, No.1; February 2019
ISSN 2287-0237 (online)/ 2287-9674 (print)
PB
thalassemia. In particular, psychological support should be
given to enhance the capacity of parents’ skill to cope with
their situation. Finally, these improvements will enhance
parents’ capacity to sustain their role in taking care of their
children, which will lead to a better quality of life for parents
and children alike.
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