Congenital heart disease and nursesexperiences
Jingdi Amber Gao
Huiju Swift
Bachelor’s thesis
May 2019
Social Services, Health and Sports
Degree Program in Nursing
Description
Author(s)Hu HuijuGao Jingdi
Type of publicationBachelor’s thesis
DateMay 2019Language of publication:English
Number of pages29
Permission for webpublication
Title of publicationCongenital heart disease and nurses experiencesA Literature ReviewDegree programmeDegree programme in NursingSupervisor(s)Palovaara MarjoJalonen AnuAssigned by-AbstractWith the advent of new equipment and the increasing maturity of operatingtechniques, CHD adult patients in a mounting number transfer pediatric therapy areato adult area as well as need professional treatment, but when pediatric nurses carefor adult patients, it is difficult to achieve the nursing goal.The aim of the study was find out nurses’ experiences for taking care of adultcongenital heart disease (CHD) patients and provide information to improve nursingcare of adult patients with congenital heart disease from the previous experience ofnurses .A literature review was the method used in this study. Data was searched andobtained from host of article databases, such as Cinahl and Pubmed. A total of fivearticles were reviewed and analyzed.The result indicated that the intervention of patients with congenital heart diseasedoes not only require the efforts of nurses or,coordinated nursing care in variousmedical units,but the patient also needs to be actively engaged in the treatment andadjust the state of mind.Attention should be paid to the patients according to theirdifferent characteristics in nursing care,and give the suitable guidance.At the sametime, patients need lifelong follow-up, psychosocial and behavioral support,in orderto get better development in the future.Keywords/tagsCongenital heart disease, experiences,treatmentMiscellaneous-
Contents:
Contents..........................................................................................................................31 Introduction 4
2 Congenital heart disease and how to care adult patientwith CHD.............................62.1 Congenital heart disease 62.2 Nursing for CHD 9
3 Aim, purpose and research question.........................................................................114.Methodology 12
4.1 Literature review 124.2 Literature research 134.3 Data analyses method 15
5 Results 175.1 Review result 175.2 Discussion 195.3 Limitation 195.4 Conclusion 20
References.................................................................................................................... 21
1 Introduction
The topic is congenital heart disease (CHD), and there are many patients suffering
from the diseases with whom the disease is difficult to treat. Different patients need
different treatments, for example, for different comorbid conditions. Moreover,
there are rehabilitation differences and differences between adult and pediatric
patients (Anton2016, 1-8).
With the advent of new equipment and the increasing maturity of operating
techniques, there have been qualitative changes in the treatment of congenital heart
disease. New interventions continue to come out, and the concept of intervention is
updated all the time. This means that in this area there have been many new trends
attributed to the host of adult CHD patients. (Robert 2015, 52-62.)
When pediatric nurses care for adult patients, it is difficult to achieve the nursing
goal. What’s more, the phenomenon will decrease the comfort of nurses because of
irregular exposure to this age group and differences in their care. (ibid)
The challenge of taking care of patients from different age groups are paying
attention to the differences in fluid volumes, appropriate ranges for chest tube
output and medication dosing between pediatric and adult standards (ibid).
Nursing staff found common examples of decreased comfort because of the
significant differences between pediatric weight-based dosing and adult standard
dosing. It is no doubt that the mortality in patients who suffer from the congenital
heart disease has largely decreased during the recent decades because of
advancements in pediatric care. (Zacharias et al. 2017, 224-230. )
The aim of the thesis was to examine nurses’ experiences in taking care of adult
congenital heart disease (CHD) patients. The purpose was to provide information
based on nurses’ previous experiences for improving the nursing care of adult
patients with congenital heart disease.
2 Congenital heart disease and how to care adult patient with
CHD
2.1 Congenital heart disease
Congenital heart disease is the most common birth defect, and its incidence rate is
about 0.8%. It includes a wide spectrum of simple, moderate and severely complex
cases. Although the mortality of patients who suffer from congenital heart disease
has decreased significantly, the risks are still high when compared to other diseases.
This is why it is necessary to decrease mortality in the vulnerable groups (Zacharias
et al. 2017,224-230). Moreover, even though the life expectancy has improved,
congenital heart disease patients may need to do surgery many times and have many
complications, such as arrhythmia and heart failure. Furthermore, because of the
advances in the treatment technology of congenital heart disease, intensive care
medicine and cardiac surgery, more and more patients’ lives are saved, and they live
into adulthood. This is the first time when there is a greater number of adults who
suffer from CHD than that of children, and the populations is increasing by the rate of
about 5%. (Adults with congenital heart disease: utilizing quality of life and Husted's
nursing theory as a conceptual framework 1999, 1-11.)
Congenital heart disease is the most common type of congenital malformations,
accounting for 28% of all congenital malformations. It refers to the embryonic
development of the heart and large blood vessels due to the formation of disorders
or abnormalities caused by anatomical abnormalities. The incidence of congenital
heart disease cannot be overlooked because it accounts for 0.4% to 1% of living
infants.( Zacharias et al.2017,224-230 .)
Congenital heart disease and genetic factors have a certain relationship. Namely, the
incidence with the immediate family members of those who have had congenital
heart disease as children is significantly higher than in the normal population.
However, this genetic mode is different from any single-gene genetic disease. It only
indicates increased risk of congenital heart disease because of radiation exposure
during pregnancy, drugs, viral infections and so on. ( Xike et al. 2013, 394-399.)
Heredity is a very similar phenomenon between parents and children in terms of
their morphological structure and physiological function. Many studies have shown
that congenital heart disease has a clear trend of familial incidence. The prevalence
of CHD in the siblings and children of CHD patients is 10-14 times higher than that
in the general population. With CHD parents, the prevalence of the disease in their
children is 2% to 5%. CHD occurring within the same family can be of the same type
or of different types. CHD is genetic and has a certain genetic predisposition, but it
is not a certain genetic law, and it cannot be called a genetic disease. (Ramya 2013,
192-195.)
Complications of congenital heart disease
Complication is a complex clinical concept. Scholars have defined the following
complications: one refers to the development of a disease in the development of
another disease or symptoms, and the latter is the former complication. Another
complication is that during the course of medical treatment and care, the patient has
another disease or several diseases associated with the disease caused by the
merger of one disease (Zacharias et al. 2017, 224-230).
Common complications of congenital heart disease are pneumonia, heart failure,
pulmonary hypertension, infective endocarditis, hypoxia attacks, atrial septal defects
of the cerebral thrombosis and cerebral abscesses, ventricular septal defect and
patent ductus arteriosus often susceptible to pneumonia. The above complications
of congenital heart disease are further complicated by a bacterial endocarditis. (Karin
et al. 2015, 770-775.)
Trends and some phenomena in the development of CHD
Adult risk of complications increased
As the surgery for complex congenital heart disease becomes more advanced and
more and more patients survive to adulthood, many of these adult patients remain in
the pediatric hospital system. As these patients grow older, the increased risk of
complications and comorbidities may make their care more complicated. (Anton2016,
1-8.)
Congenital heart disease-related long-term complications
The estimated population of ACHD in the United States exceeds 1 million and
continues to maintain a steady growth. Because of the decline in early mortality
because of congenital heart disease, modern medicine is facing the long-term
complications associated with congenital heart disease. These include conditions
such as heart failure, increased risk of endocarditis, arrhythmia burden, pulmonary
hypertension, valvular dysfunction and pregnancy. (Akanksha, Ponraj, Huie2017,
467-474.)
Because of the advanced technology, there are more and more CHD patients from
pediatrics transforming to adults. Therefore, it is important to improve the nursing
service for adults. Since there are limited number of nurses for adults, pediatric
nurses care for adults, and nurses feel uncomfortable because of the difference in
medical knowledge. This is why we need to consider the issue from the perspective
of nurses. Furthermore, adult patients are the aim of nursing services, so it is no
doubt that it is also significant to think about adult patients (Peggy 2016, 253-254).
Adolescent congenital heart disease patients are an important group that needs a
successful transformation. In this process, the patients need to understand and
accept the responsibility for their health, and this process decides the quality of their
future life and treatment. Moreover, it is a step that causes many psychological
problems. (Moceri et al. 2015, 847-854.) Overprotection by parents and heart defect
complexity in childhood are linked with heart-focused anxiety in adults with CHD
(Lephuong et al. 2011, 260-267.).
2.2 Nursing for CHD:
Nursing is the protection, promotion, and optimization of health and abilities. In
addition, it is the prevention of illness and injury, facilitation of healing, alleviation of
suffering through the diagnosis and treatment of human response, and advocacy in
the care of individuals, families, groups, communities and populations([What is
Nursing?]).
According the situation, many adult patients still accept care in the pediatric health
system. This is a challenge that pediatric nurses to take care of adults, because they
lack the experience to give treatment and medicine for adults. (Anton2016, 1-8)
Furthermore, the perspective of mental is a challenge for adult patients with CHD,
because these patients need face many kinds of biopsychosocial problems, and there
is limited data about biopsychosocial care of adult patients with CHD.
About how to improve the nursing services for adult patients with congenital heart
disease, some previous research states that more education for fellows, nurses and
service supporters is needed to improve familiarity with the pathophysiology of adult
patients with CHD. This would ensure a smooth transformation from pediatric care.
Moreover, adult patients need to transform to a specialized center for adult CHD,
which can support regional care and link adult care with previous care. They also
need a comprehensive team in which the nursing staff are comfortable with taking
care of adult congenital heart disease patients.
Common nursing diagnosis for CHD patients
First, the activity of stamina is related to the imbalance of oxygen supply and
demand. Secondly, the risk of infection is associated with low immunity in the body.
Thirdly, nutrition disorders may lead to a lower food intake than what the body
needs for the proper heart structure resulting in a reduced volume of blood
circulation, tissue oxygen and nutritional deficiency. Fourthly, the potential
complications include cerebral thrombosis that is related to the increase of red blood
cells and the increase of blood viscosity. They also include heart failure associated
with cardiac structural defects and pulmonary hyperemia. Finally, the potential
complications include infective endocarditis that is associated with endocardial injury
and infection. (de Araujo 2007,131-141.) Fear is related to the threat of disease and
the unfamiliar environment.
Nursing measures:
Nurses should make a living system suitable for the patient's activity according to the
patient's condition. In addition, they should take measures to prevent infection as
well as to introduce self-protection information to children and parents. They should
also should avoid contact with patients with infectious diseases. Therefore, the air in
the ward needs to be kept fresh. Once an infection occurs, it should be treated
actively. From the perspective of nutrition, patients need to be given a high protein,
high calorie and a high vitamin diet in order to enhance their physical fitness. In
addition, the nurses should observe the patients’ vital signs symptomsand signs as
well as avoid the occurrence of complications. Moreover, the psychological aspects
are not something that the nurses can afford to ignore. As nurses, we should care for
the patient, establish a good nurse - patient relationship, introduce the related
information of the disease and make the diagnosis and treatment work smoothly.
(Simone& Veraci 2016, 724-734. )
3 Aim, purpose and research question
The aim of the study is to find out nurses’ experiences for taking care of adult
congenital heart disease (CHD) patients?
The purpose is to provide information to improve nursing care of adult patients with
congenital heart disease from the previous experience of nurses .
Research question is what are the Nurses’ experiences taking care of adult CHD
patients?
4.Methodology
4.1 Literature review
Literature reviews are objective and critical analyses of the relevant literature on the
topic under review. Literature reviews have many difference definitions and many
different ways. A literature review is a way for a busy nurse to find some evidence.
(Rew 2011, 64-69.) It can also provide a method for seeing how the topic under
investigation has been explored. If the information is needed for a clinical setting,
research is necessary. Furthermore, a literature review is an end product which can
identify the best practices or to fill a gap in our knowledge. If a gap is identified, a
literature review gives a reasonable clinical project or research study (Ward-Smith
2016, 253-254).
At the beginning, we need to identify research questions which need to be answered ,
identify the inclusion and exclusion criteria of the sources, select the search criteria,
find the suitable data group for searching data, do an electronic search, review the
search results as well as include and exclude the material. After this, data extraction
follows. We must systematically retrieve data related to the research problem and
determine the quality of our research. We must summarize the findings and explain
the meaning of the evidence obtained. Lastly, we must acknowledge the limitations
and biases inherent in the thesis as well as publish and use discovery in practice.
(Rew 2011,64-69.)
In conclusion, our purpose and aim is through these steps to describe, summarize
and synthesize published findings about some special phenomena or problems in
practices. Our findings not only answer questions, but also save other scientists or
practitioners the time to obtain and evaluate these studies themselves.
Furthermore, the review may help to find more potential problems under the topic.
Nurses can use literature reviews as a reliable way to support what they do in the
nursing environment. In addition, literature is the basis of practice and knowledge.
Moreover, a literature review is a method to collect and analyze data which is
directly related to nursing practice, and it is an important project for nurses who are
trying to solve a problem and find new problems. Lastly, many problems have been
solved in the process of a literature review, and the solutions have found their way
to clinical applications. (ibid)
4.2 Literature search
After deciding the research topic, keywords and inclusion criteria, we started to
search for literature. The literature search included publications from November of
2007 to February of 2018. We did the most of the literature search in the school
library and a small part in some health websites. We searched for the literature
together in order to reduce mistakes and stick to the topic and questions. We
divided the search to two parts of which the first was using different keywords about
our topic to search articles or books, for example, articles or sources focusing on
congenital heart disease (CHD), its nursing care and nurses’ experiences. In addition,
the language was also important. According to the different key words and language,
we read the title and abstract to clear up some articles, and secondly, we read
through the articles carefully and according to our needs, decided on the final
selection.
The inclusion criteria are:
-Study in English, Chinese
-Relate to the topic
-Answers the research question
-The key words include congenital heart disease or congenital heart defect,nurs*,
and experience or perspective or view or perception or attitude.
-Have high credibility and representativeness
-Published between 2007 to 2018
-Through enough research processes and get enough databases
The exclusion criteria are:
-The topic was badly distorted by the editor's opinion
-No relationship with topic and key words
Chosen based on Cinahl Pubmed
Results
Search terms:congenital heart disease or
congenital heart defect,nurse*, and
experience or perspective or view or
perception or attitude
75 322
The years (1997-2018) 45 183
Languages 38 183
Peer reviews 38 183
Full text 22 174
Title and abstract 1 34
If the content relevant studies 1 4
Final results 5
Table 1: Article research process
4.3 Data analyses method
Data analysis is a process of checking, cleansing, transforming, and modeling data
with the aim of finding useful information, conclusions, and supporting thesis
decision-making (Data analysis, 2018).
The comparison method is a important method, through the classification and
summary, we can find the patterns, themes, variations, and relationships of these
data.
Firstly, the classification can make a wide range of data into an ordered collection,
easy to find and use. The project generally refers to: category, number, name of the
material, author, date of publication, source of information, date of entry. The
classification mark should be determined according to the purpose of the research
topic (Amber 2016,199-200).
For example, the article's theme is "How to Take Care Adults with Congenital Heart
Disease" The patients’ information, the duration of illness, the time of treatment, the
degree of illness, etc. should be initially classified. According to the purpose of the
research, the researcher determines which one or several of the classification marks
are selected.
Secondly, select the category labels should reflect the nature of the research of
things. The classification mark that has the essential meaning to the thing studied is
put forward through analysis. (Joshi 2013, 915-919.)
For example, to know how well a patient is,after treatment and nursing care: the
treatment method, nursing method, number of times, or length of time should be
used as the criteria for classification.
When analyzing the data, it should reflect people's subjective opinions, information
data feelings, and reflect the objective facts, separately. To distinguish the special
situation of the data and the general characteristics of the data.(Shereen 2010,
229-238.)
The next step of data analysis is data comparison, the step need to analysis the
patterns, themes, or relationships of the primary data, and use difference colors
mark them and the year order also can be arrangement. What’s more, the
relationship can be described between the difference themes. The comparison of
data and themes can explain the early process more clearly.
Drawing and verification conclusion is the final process of data analysis, the
conclusion will be correction continually and add more details in the conclusion
which can include the data as much as possible. All pattern, themes and relationship
need to matching the primary data sources.
Review result
Discussion
Limitation
Conclusion
5 Results
Some differences of nursing intervention between children’s CHD and ACHDSelf-care of patients with CHDIndividualized management of different patientsCommunication between nurses and patients
Some details to give patients with ACHD better nursing care
Conclusion and where we can improve in the future
Picture 1 : Results
5.1 Review result
Because CHD's condition is complex, it often takes a long time to take care of it.
Unlike children with CHD, adult CHD patients often need more advice about life,
social and social life. Unlike children's CHD, to take care of adults with congenital
heart disease, nurses need to know a lot of more complex knowledge and different
processing skills. At the same time, due to the rapid growth of population, the
development of service industry and the needs of patients, ACHD nurses need
extensive knowledge. The role of nursing specialists is becoming more and more
important. It is necessary to strengthen skills in clinical practice, education,
consultation, scientific research, leadership and management.
In the part of the requirement of nursing skill, self-care is an important part of
nursing for patients with congenital heart disease.For example,the differences of age,
sex and educational background of the patients would have a great impact on the
formation of self-care model, we could intervene the patients with coronary heart
disease better in their future by influencing these factors. (McCabe 2015, 610-615).
Now, there are more and more doctors and nurses who believe that patients with
coronary heart disease would have different degrees of psychological problems. It
means that the patients need to adjust their mindset under the guidance of medical
staff. At present, the specific unified management methods for patients with
congenital heart disease have not been determined yet, but the individualized
management of different patients would give help to the patients' psychological
recovery. In the course of nursing, we should give different help and education to the
different patients according to their actual situation and guide them correctly. At the
same time, patients need lifelong follow-up and support of psychosocial or
behavioral to connect them with their medical care. (Elizabeth 2012, Anton2016.)
As for team coordination, the communication between nursing team, or between the
team and patients and communication with patients is very important at work. Good
communication at work can help nurses improve the quality of nursing. When
communicating with patients, we should not only tell patients how to follow, but also
learn and improve from the needs of patients.(Faganello 2008, 146-151.) A doctor,
legal adviser, or other professional people; supporting patients undergoing.
5.2 Discussion
The ACHD nursing is very important nowadays, and the ACHD nursing include
physiology nursing, mental health nursing, specific nursing and self-care. Because the
development of technique, the long term survival of patients with CHD is higher and
the ACHD will more than children with CHD. What’s more, the ACHD nursing is
different with children CHD nursing, so the stage of translation between childhood
and adulthood need be paid more attention to care.
Nursing staff need to notice except the nursing in the hospital, the care maintenance,
monitoring and management by themselves also very important. Besides, the
self-efficacy, education, gender, perceived family support, and complications can be
factors to influence the self care. (McCabe 2015, 610-615.)
In the section of mental health, the symptoms of patients with CHD is similar with
other depression patients and there did not have the treatments only for the
patients with CHD, but it is no doubt that the treatment method is result of the
intervention of individual and the patients needs which can encourage nursing to
solute the depression. (Barley et al. 2012.)
The research can encourage nurses give patients with ACHD better nursing care in
details and know more about the significance of ACHD nursing,what’s more, the role
of nursing experts is become more and more important.
5.3 Limitation
It took a lot of patience to write this article, but it was also limited by many factors at
the same time. The biggest difficulty is language, because in addition to native
Chinese, we can only read English, so this article can only quote English literature. At
the same time, it is also limited to find free articles that meet the requirements of
this article. One more limiting factor is cultural differences. There are differences
between Chinese and Western cultures. The selection of articles, as our source of
literature, should be consistent with the values of self-worth and to express the
content of various cultures. The last point is that the author of this article has only
two people. It's hard to find a lot of information.
5.4 Conclusion
First of all, adult patients with congenital heart disease need more special care than
children with CHD. In adulthood, they may have complications, from basic diseases
or heart repair, to make them live like children, and therefore, these adults need
lifelong heart care.
At the same time, for nurses, we need to have a deep understanding of CHD. We
need to know a lot of more complex knowledge and different processing skills to
improve nursing skills. In the work, we should cooperate with the team and
cooperate with patients. Patients need self-regulation and psychological counselling.
At this time, nurses should help them as much as possible.
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Author(s),
(year),
country
Purpose and aim of
the study
Research
Methods or
Instrument
Samples(n) Main results
Faganello Outline the Literature congenital Long term survival of patientscomplex research heart disease with ACHD has dramatically
G; Stuart healthcare method patients improved in the last 40 years
AG,2008 requirements of and soon in the UK there willthese patients, be more adults than children
Britain who represent a with congenital heart disease.new clinical and Th e transition betweenmanagerial childhood and adulthood inchallenge for the particular should be carefullyNHS. managed. Medical and non
medical operators will facenew issues and clinicalproblems which are emergingalong with the ageing of thesepatients. Management of theACHD patient may bechallenging and a newcardiology specialty, ‘ adultcongenital heart disease,’ hasdeveloped to try to ensureimproved clinical care for thefuture.
Kristin Anton,
2016,thedescribes the
challenges in
Establish
model,case
Adult(n=707) Of the adults admitted, more
than 30% had comorbidUnited
caring for adult study,qualit conditions that requiredStates.
patients in ative subspecialty care. The need for
pediatric settings study,use adult consultation services will
and how nurses preparation only become more prominent
and tool as the adult CHD patients
comprehensive continue to age and have more
medical teams can complex medical conditions
effectively
influence preparing
patients for the
transition to adult
care.
develop
McCabe describe self-care Multiple Persons with Only 44.7%, 27.3%, and 23.3%
N, Dunbar and its regression moderate or of participants performed
SB, Butler antecedents in the severe ACHD adequate levels of self-care
J, Higgins ACHD population. (N=132) maintenance, monitoring and
M, Book management, respectively. In
W, Reilly multiple regression analysis,
C,2015, self-efficacy, education,
Ireland gender, perceived family
support, and comorbidities
explained 25% of the variance
in self-care maintenance
(R(2)=.248, F(5, 123)=9.44,
p<.001). Age, depressive
symptoms, self-efficacy, and
NYHA Class explained 23% of
the variance in self-care
monitoring (R(2)=.232, F(2,
124)=10.66, p<.001).
Self-efficacy and NYHA Class
explained 9% of the variance in
self-care management
(R(2)=.094, F(2, 80)=5.27,
p=.007).
Elizabeth A Barley,Paul Walters,André Tylee &Joanna Murray,2012,England
This study is part of
the UPBEAT-UK
programme of
research and was
Sampling,DataCollection,Analyse
Individual
in-depth
interviews
with 10 GPs
In mental respect, depression
in patients with CHD was
considered similar to
depression in other patients
designed to and 12 PNs in and no coherent management
understand South East approach specific for
general London. Data depression in CHD was
practitioners' (GPs) were analysed identified.
and practice using constant
nurses' (PNs) views comparison. Personalised interventions are
and experience of needed which account for
managing individual need and which
depression in CHD. enable and encourage nurses
and patients to make use of
existing resources to address
the psychosocial factors which
contribute to depression.
Vernon,Sheena; Finch,Melanie; Lyon,Joy,2011,the
The intention is to
raise nurses'
awareness of this
growing patient
Data
collection,
directional
analysis,Lite
The nurse
specialist
The rapidly-expanding ACHD
patient population and
evolving nursing roles
contribute towards the
Unit Kingdom group, their rature complexities of role definition .
specific needs,and research Service development and
the contribution method Patient need make it necessary
specialist nurses for ACHD nurses to have a wide
make to patient range of knowledge and
benefit and skills.The role of nurse experts
improved clinical is becoming more and more
outcomes. important.
(Table 2:Data analyses method)