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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theory as a conceptual framework. 1999, Critical Care Nursing Quarterly (CRIT CARE

NURS Q), 22(3): 1-11.

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e1-e8.

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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)