ORIGINAL RESEARCH: EMPIRICAL RESEARCH – QUALITATIVE
Between invisible defects and visible impact: the life experiences of adolescents and young adults with congenital heart disease Yueh-Tao Chiang, Chi-Wen Chen, Wen-Jen Su, Jou-Kou Wang, Chun-Wei Lu, Yuh-Fen Li & Philip Moons Accepted for publication 6 September 2014
Correspondence to C.-W. Chen: e-mail: [email protected] Yueh-Tao Chiang MS RN Doctoral Candidate Graduate Institute of Clinical Medical Sciences, Chang Gung University, Taoyuan, Taiwan Chi-Wen Chen PhD RN Associate Professor School of Nursing, National Yang-Ming University, Taipei, Taiwan Wen-Jen Su MD Associate Professor Department of Pediatric, Chang Gung Children’s Hospital, Taoyuan, Taiwan Jou-Kou Wang MD PhD Professor Department of Pediatrics, College of Medicine, National Taiwan University, Taipei, Taiwan Chun-Wei Lu MD Instructor Department of Pediatrics, College of Medicine, National Taiwan University, Taipei, Taiwan Yuh-Fen Li BS RN Head Nurse Department of Nursing, Chang Gung Children’s Hospital, Taoyuan, Taiwan Philip Moons PhD RN Professor Department of Public Health and Primary Care, KU Leuven-University of Leuven, Belgium
© 2014 John Wiley & Sons Ltd
CHIANG Y.-T., CHEN C.-W., SU W.-J., WANG J.-K., LU C.-W., LI Y.-F. & M O O N S P . ( 2 0 1 5 ) Between invisible defects and visible impact: the life experiences of adolescents and young adults with congenital heart disease. Journal of Advanced Nursing 71(3), 599–608. doi: 10.1111/jan.12546
Abstract Aim. To describe the life experiences of adolescents and young adults with congenital heart disease. Background. Owing to medical advances, most children with congenital heart disease are expected to survive into adulthood. The transitional development from adolescence to adult is the critical period for fostering self-care. Design. Descriptive phenomenological study. Methods. Thirty-five patients of 15–24 years old with congenital heart disease were recruited from paediatric cardiology clinics by purposive sampling. They were individually interviewed between October 2012–February 2013 using a semi-structured interview guideline and joined adult congenital heart disease clinics at two medical centres in northern Taiwan. The data were analysed using descriptive phenomenological method developed by Giorgi. Findings. The essence of the life experience of adolescents and young adults with congenital heart disease involves a dynamic process of moving between invisible defects and coexistence with the disease. Six themes emerged: (1) invisible defects: the existence of imperfect understanding; (2) conflict: interpersonal frustrations; (3) imbalance: the loss of self-balance; (4) suffering: increasing anxiety; (5) encounters: meeting needs; and (6) coexistence: positive coping strategies. Conclusion. As patients with congenital heart disease transition from adolescence into adulthood, they must learn about their disease, overcome frustration and anxiety and develop self-care strategies for coexisting with congenital heart disease. Results of this study may serve as clinical care guidelines for adolescents and young adults with congenital heart disease and give a reference for developing transitional intervention strategies. Keywords: adolescent, congenital heart disease, nursing, transition, young adults
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Why is this research needed? ● Currently, there are more adults than children with congenital heart disease. ● Adolescents and young adults face a transitional phase between childhood and adulthood. ● Examining the life experiences of individual adolescent and early adult patients is essential for developing self-care measures to assist with disease adaptation and increase the quality of care.
What are the key findings? ● The life experiences of patients with congenital heart disease from adolescence to early adulthood involve dynamic processes between invisible defects and coexistence with the disease. ● These patients experience setbacks in interpersonal situations, leading to a loss of balance and increasing anxiety. ● They identify their needs and develop positive coping strategies to slowly reach a state of coexistence with their disease.
How should the findings be used to influence policy/ practice/research/education? ● An integrated interdisciplinary care plan must be provided for assistance and support. ● Counselling should be provided to assist patients in adolescence and early adulthood to establish appropriate supportive friendships. ● Consideration of spirituality may be included in future care plans.
Introduction Congenital heart disease (CHD) is the most common type of congenital disorder, with a prevalence of 91 for every 1000 live births and the prevalence of CHD is higher in Asian countries than in Europe and North America (van der Linde et al. 2011). CHD can be divided into three types based on the relative complexity of patients’ defects – mild, moderate or complex. With the exception of repaired minor patent ductus arteriosus, all defects, regardless of severity, require lifelong tracking to monitor changes in disease (Warnes et al. 2001). Advances in medical care have enabled nearly 90% of CHD patients to survive into adulthood (Moons et al. 2010). Currently, there are more adults than children with CHD (Marelli et al. 2007, Silversides et al. 2010, Winter et al. 2010). 600
Background Adolescents and young adults face a transitional phase between childhood and adulthood. This involves a transition from ‘child-centred’ health care to ‘adult-oriented’ care (Hudsmith & Thorne 2007). During transition to adulthood, adolescents and young adults may encounter a series of complex problems related to, for example, sex, marriage, pregnancy and employment (Ross & Fleck 2007). The provision of individualized care should be based on an understanding of these patients’ experiences. Therefore, examining the life experiences of individual adolescent and young adult patients is essential for developing care measures to assist with disease adaptation and increase the quality of care. Several studies from Europe and North America have addressed the life experience of CHD patients. Claessens et al. (2005) performed qualitative interviews with young adult patients between ages 25–40. These interviews indicated that the life of adult CHD patients is a process of achieving normalization. In another study, CHD patients between ages 22–39 were interviewed. The results indicated that the patients’ lives were filled with contradictions and an urgent desire for health. Thus, the patients hid their physical conditions from medical staff and deliberately ignored the existence of their disease (Berghammer et al. 2006). Shearer et al. (2013) interviewed CHD patients between ages 13–17 and found that their life experiences were similar to those of their peers. The most substantial influence of CHD on their lives was their use of various methods to feel the same as others, avoid alienation in friendships and maintain normal interactions (Shearer et al. 2013). The only study that employed structured questionnaires to investigate the self-perceived care needs of adult CHD patients found that the existing quality of care met their needs (Schoormans et al. 2011). However, the patients also reported that the communication skills of physicians appeared to be lacking and could be improved. Evidence from the above studies demonstrates that the life experiences of CHD patients involve contradictory processes of seeking normalization. Adolescents invariably encounter the development of peer relationships and changes in the roles of their parents. Although these studies provide a satisfactory understanding of CHD patients’ life experiences, knowledge gaps remain. First, the cited studies were all conducted in western countries. Eastern and western countries differ substantially in their environments, cultures, medical resource distribution, healthcare policies and health insurance systems. Furthermore, research has particularly emphasized adult life experience in CHD patients. © 2014 John Wiley & Sons Ltd
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Therefore, the life experience of adolescents and young adults with CHD must be explored further. Accordingly, this study investigated CHD patients’ life experiences from adolescence to early adulthood. The results may provide a reference for further developing this healthcare intervention stage and localizing clinical care.
The study Aim The aim of this study was to describe the life experiences of adolescents and young adults with congenital heart disease.
Design To understand the living experience in real world of adolescents and young adult with CHD, descriptive phenomenology was adopted (Giorgi 1985, Mu 1996).
Sample/participants Purposive sampling was used to select participants. Thirtyfive adolescents and young adults with CHD were recruited from paediatric cardiology clinics and joined adult congenital heart disease clinics at two medical centres in northern Taiwan. The inclusion criteria were: (1) had CHD diagnosed by a paediatric cardiologist by the age of 2 years, which demonstrates the context of growing up with CHD; (2) were aged 15–24 years; (3) could speak Mandarin; and (4) with their legal representative (parent or guardian), gave written informed consent for the interview to be recorded. Considering that patients with chromosomal abnormalities or major injuries and diseases have different life experiences than patients with congenital heart diseases, patients who had any chromosomal abnormalities or other major disease (e.g. Down syndrome or epilepsy) were excluded. During the course of the study, the interview data were continuously examined to ensure generality. The items checked included severity of the disease, gender and age. After the 33rd subject, no additional themes emerged. As there were relatively fewer female interviewees, two more female participants were interviewed to ensure that the data were saturated. The sample included 21 males and 14 females. The participants ranged in ages from 15–24 (mean = 200 years); the body mass index (BMI) of participants showed that 17 had healthy weight, 2 were underweight, 10 were overweight, 3 were mildly obese and 3 were moderately obese. Based on criteria of the 32nd Bethesda Conference (Warnes et al. 2001), the complexity of © 2014 John Wiley & Sons Ltd
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CHD included 40% simple, 372% moderate and 228% exceptionally complex. Only six participants had never undergone surgical intervention.
Data collection The study was conducted from October 2012–February 2013. Data were collected by two researchers who had experience in paediatric nursing and were trained in qualitative research. Based on the philosophical perspectives of descriptive phenomenology (Giorgi 1985, Mu 1996), the interviewer needed to establish a trusting relationship with participants to gain rich descriptions of their experiences. For participants coming from clinical settings, some level of trust had been established previously because one of the data collectors had data collection experience in the same clinic for 4 years. The data of the present study were collected using a semi-structured questionnaire. The interview guide was established based on published literature and discussion with experts. After interviewing two participants, one additional question ‘Do you have any suggestions for the medical staff?’ was added into the official interview guide (Table 1). The interviews took place in a quiet meeting room with minimal interruptions after the researcher explained the purpose and procedure of the study and obtained the consent of the subject and his/her guardian. Audio and written records of the interview, which recorded non-verbal behaviour of participants, were kept. To maintain the quality of the data collection, each interview was limited to one subject. Whether the participants were adult or not, all participants were interviewed separately after explaining and clarifying any doubts of their guardians. Before the interview officially started, the researcher and the subject would first have unstructured conversations to help the subject relax. The interview did not have a time limit and only ended when the subject deemed that he or she had described his/her experienced sufficiently or when the subject ended the interview. The subject and the interviewer though the clinic were already familiar with each
Table 1 Interview guide. 1. What are the impacts in daily life about living with congenital heart disease? 2. What do you worry about your congenital heart disease? 3. Which clinic are you follow-up now? How do you feel? 4. What kinds of medical resources (support) do you need now? 5. As growing up, maybe you need transfer to adult cardiology, How do you feel? 6. Do you have any recommendations for health care?
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The study proposal was approved by the Institutional Review Board of two participating medical centres in Taiwan. All procedures respect the rights of the participants and ethics as an utmost priority. All included patients and/or their parents or guardians provided signed informed consent.
(1985) during data analysis. The data were collected with an open attitude. The contents of the tape recordings of interviews were confirmed at least twice along with the written field notes and the participants’ reflective journal to ensure the credibility of data. The analytical procedure was followed strictly and the written and field records were peer-reviewed to assure dependability of the data analysis. The present study used purposive sampling to ensure the range of the participants and improve the transferability of the data. During the study, the subjective opinions and biases of the researchers were recorded. Through data restoration, the data were analysed objectively and research history was carefully maintained to achieve data conformability.
Data analysis
Results
The data were analysed using descriptive phenomenological method developed by Giorgi (1985). The five steps of data analysis are illustrated by an exemplar in Table 2.
The study participants ranged in age from 15–24 years. The life experiences of CHD patients from adolescence to early adulthood involve dynamic processes between invisible defects and coexistence with the disease. Results of this study address the following six themes: Invisible defects: the existence of imperfect understanding; conflict: interpersonal frustrations; imbalances: the loss of self-balance; suffering: increasing anxiety; encounter: meeting of needs; and coexistence: positive coping strategies.
other to a certain extent and were able to openly discuss the participants’’ experiences. Therefore, sufficient data were able to be acquired after only one interview with each subject. These interviews generally took 45 minutes, ranging between 17–93 minutes.
Ethical considerations
Rigour The rigour of the present study referenced the qualitative research rigour standard introduced by Lincoln and Guba
Table 2 An exemplar for the processes of data analysis. Step 1: Reading the text to obtain a sense of the narrative Step 2: Extracting the meaning units Step 3: These meaning units were examined to gain a sense of and comprehensively
Step 4: Meaning units were transformed into psychological language
Step 5: Specific subcategories were related to general themes
Meaning unit
Psychological language
Subcategories
Themes
No. . ..just go with the flow. . .Ah. . .. after surgery everything went well, my parents didn’t tell me anything and I never asked any question about my heart (C31-1-16~24). There was several years interrupted tracking with my heart disease. Chest discomfort had occurred, I thought it was caused by pregnancy and no more attention. Apart from chest tightness, everything was fine. . . I did not know it related to my heart disease.(C34-9-20~10-6) If one of my friends catch a cold, I’ll wear a mask to prevent being infected. Oh. . . adopt strategies to protect myself is very important. (C10-18-1-2) If I just died so young, I will place hope on next transmigration. (C07-26-3~5)
Protagonist of the disease, supporting role of knowledge.
Silent protagonist erroneous understanding
1. Invisible defects: the existence of imperfect understanding
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1. Invisible defects: the existence of imperfect understanding
Lost to follow due to lack of understanding
Adopt strategies to protect self
Self-protection
6. Coexistence: positive coping strategies
Pinned in reincarnation
Seeking for spiritual support
6. Coexistence: positive coping strategies
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Invisible defects: the existence of imperfect understanding For participants in this study, CHD was similar to invisible defects bestowed on them at birth. However, only five of the patients, approximately 14% of the sample, provided the correct names of their diseases and the treatments they had received. In the course of medical treatment, 28 of the patients, 80% of the interviewees, had never asked a question of their own initiative. They were unclear of their own restrictions and unable to envision the potential problems they could face in the future:
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relinquish control, leading to extreme emotion. The ‘disease’ label influenced the development of their peer relationships: After my teachers and coaches mentioned it to me, I was furious. I returned to my mother and said, ‘Did I not tell you not to mention it to anyone?’ She replied that she was concerned about me. I then told her, ‘You are worried. . .you might as well just go die. Why are you so worried? If you act like this, the whole school will think that I am an idiot. (C11) Everyone always said that I was a freak just because I have heart disease. The parents of my friends told them not to play with me.
Patients with heart disease look the same as anyone else! I just have
They were afraid that if something happened, they would be unable
different parts inside and I do not seem to want to know this unless
to take responsibility for it. How can parents directly hurt another
I feel unwell. (C10)
child like this? (C12)
My surgeries were all successful and I have not sought to understand it. This is because I did not know anything when I was young. My parents did not say anything to me and neither did my physicians. They spoke only with my mother. I only learnt the word ‘Fallot’ (i.e. Tetrology of Fallot, a congenital heart disease) when I was 17. (C31)
Several patients had misperceptions of their diseases. Four patients with diseases of varying complexity mistakenly believed that their diseases had been cured after treatment and that they did not need medical treatment in the absence of symptoms. Thus, they stopped monitoring their own conditions for some time. Two of the patients understood the importance of regular physician visits only after they were hospitalized when their symptoms worsened: I just felt. . .that my condition was not bad. After a surgery I had when I was 9, then I did not follow-up for several years. My mother told me I did not have any symptoms. More than 10 years later. . .when I was 17 or 18, I gradually began to monitor my condition. Because I experienced chest tightness, I went to an emergency department. (C12)
Regarding complexity of the defects, several patients were lost to follow-up because of these misperceptions, failing to return to their physicians until symptoms manifested.
Conflict: interpersonal frustrations The majority of the patients began learning to be independent from their parents when transitioning from adolescence to early adulthood. As they began exploring their freedom, they typically experienced repeated conflicts in interpersonal situations because of the disclosure of their CHD at school. Some of their parents struggled to © 2014 John Wiley & Sons Ltd
The patients were also prevented from developing relationships with the opposite sex because of their illnesses. Sometimes patients were concerned about their current needs; but meanwhile physicians might focus on their future health issues. Inconsistency in disease attention between physicians and patients led to feelings of frustration and unmet needs among the patients. In addition, excessive concern and restriction from other people and unsympathetic treatment, such as colleagues doubting their work ability, public disclosure of their condition and strange looks from friends and relatives were difficult for the patients to tolerate.
Imbalances: the loss of self-balance Several patients expressed negative views of their physical limitations. They believed that their disease impaired their abilities at both school and work. Nearly half of the patients elected to ignore their disease and health, even engaging in health damaging behaviours that lead to obesity and other problems. Four of them began to smoke and consume alcohol, ignoring the effects on their bodies. They did detrimental things to prove that their disease did not affect them. They frequently struggled and lost their sense of balance in various situations: I do not want other people to know. It is humiliating. I have to cover up the scars. . .I have a single view on my heart disease, a more negative view, because I feel that it is a burden. (C06) Later, I just felt that I was fine, why do you think of me this way? Thus, I began to go astray in junior high school. I messed around with everything I could. I smoked, drank alcohol, chewed betel nut and took narcotics. I did ketamine, amphetamines, marijuana and 603
Y.-T. Chiang et al. MDMA. . .I took narcotics until I had no money left, then I sold drugs, fought, became a debt collector, I did everything bad that could be done. I was chased by the police. I was just looking for money. If I was even okay with doing drugs, I would be able to do anything. (C11)
However, they were concerned with the problems of transitioning from paediatric care to adult care, including potential misjudgments of their conditions resulting from a lack of trust, the need to rebuild physician-patient relationships, unfamiliar medical environments and adult cardiologists’ lack of familiarity with their defects.
When my classmates were all pushing me, I could do nothing but go try it once. Therefore, I really tried it and felt like I nearly died. It was like I had really walked through the gates of hell, as other people say. It was so strong that I felt I was nearly killed. My face was pale and my heart seemed to have no strength left. . .everyone was scared. (C18)
Some of the patients’ self-control during their adolescence was extremely weak. They even exceeded their limits in peer involvement because they could not withstand the pressure from friends, resulting in unbearable consequences.
Suffering: increasing anxiety The patients were worried about uncertainty in their illnesses and the reappearance of disease symptoms, including chest tightness, chest pain, cardiac arrhythmia and unstable blood pressure. Regardless of age or gender, some patients had faced or considered problems with employment (11/ 35), finances (8/35), marriage (9/35), reproduction (13/35) and inheritability of CHD (16/35). They worried that their physical conditions would influence them. Death was also their greatest fear (13/35):
Encounter: meeting needs In the process of moving towards autonomy in health, the patients’ experiences in life and in dealing with their diseases enabled themselves to gradually identify their own needs. Several patients suggested designing health passports or health identity cards to establish individualized health information and increase patients’ understanding of their diseases. These would be ready to use during emergencies: Some things should be put on a card like an identity card. . .like disease information, then problems that the disease may cause, contact numbers for physicians, hospitals, counselling agencies and medical institutions. Include contact methods, at least for a patient service. They can be called when emergencies occur to instruct us on what to do. (C28)
However, one patient with a health passport from one of the clinics had yet to read its content carefully and said that it facilitated the exposure of private information: I have it; it is that blue book (health passport). I only flipped
I am worried about something. . .if that the defect in my heart has
through it and have not read it carefully. . .Does carrying this not
increased or something similar, that I will need surgery. (C20)
tell other people that I have heart disease? Think of another method. . .. (C32)
Can I have children? I do not know. I am afraid that my heart will not be strong enough when that happens. . .that I will not be able to bear the child inside of me. If I get pregnant and the physician estimates that labour is impossible, should I have an abortion? Additionally, would my children have CHD? (C05) In pediatric medicine. . .other parents give me puzzled looks (laughs). Naturally, they think that my presence is strange. Yes, although I am becoming an adult, I feel that my physician here in pediatric medicine best understands my condition. I am also worried that my next physician may not understand my physical condition. We also have to develop familiarity. . .. (C17)
Although Taiwan established its first adult CHD clinic in February 2009, only 7 participants (20%) in the present study were undergoing disease management at this facility. The majority of participants continued to visit physicians in paediatric cardiology. However, approximately half of the patients felt somewhat uncomfortable in paediatric clinics. 604
Other healthcare needs reported by the interviewees included providing digitalized medical resource platforms such as apps for CHD patients; developing medical services that are integrated across multiple disciplines; introducing telemedicine to reduce the gap between urban and rural health care; enhancing disease and resource advocacy through, for example, broad installation and promotion of automated external defibrillators; establishing flexible educational resources and counselling; and carefully naming social welfare policies, for example, renaming the catastrophic illness certificate ‘the welfare card,’ to reduce negatively labelling patients.
Coexistence: positive coping strategies With each past growing experience, the majority of patients recognized that their diseases were irreversible and that controlling their disease was preferable to being controlled © 2014 John Wiley & Sons Ltd
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by the disease. Therefore, they adopted positive coping strategies. They developed healthy attitudes, identified their limitations and protected themselves to maintain optimal physical health. The patients seized opportunities to demonstrate their strength and pursued independence to reach a state of coexistence with their disease: Being your own master is better than being controlled by a disease. Naturally, self-reliance is necessary. Physicians provide only opinions. You are still the most important factor. If you think you are a sick person then you will become a sick person. You must care for yourself and trust that you can care for yourself. (C20) Just do my best and do not let other people look down on me. I must take action to make others think that I have no problems. If I appear on television 1 day, doing something like James and Chef Ah-Chi, I will openly tell people that I have heart disease, but not to look down on me. (C11)
Three patients obtained tranquillity and peace of mind through reciting mantras and anticipating reincarnation: It felt like my heart was going up and down and that I was going to have a heart attack and die when I was on an airplane taking off and landing. . .I then quickly recited the Bodhisattva. Yes. . .it is a bit like helping yourself become calmer. (C12)
When unable to exceed limitations or experiencing distress, patients sought to support themselves spiritually and attain peace of mind.
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The research data collected in the present study indicate that although the patients were the main actors in their diseases, they said that they played supporting roles. Few of the patients were the main targets for explanations of their conditions, which may have been due to the immature cognitive development of paediatric patients and active involvement from parents. These reasons explain why the majority of the patients had limited understanding of their diseases during this stage. Therefore, encouraging patients to participate in disease discussions and providing comprehensible disease information based on patients’ cognitive development is crucial for enhancing patients’ self-understanding. Although the link between regular follow-up visits and patients’ diseases and health outcomes requires additional empirical evidence, adequate disease knowledge is a crucial foundation for health self-management during the transition from adolescence to early adulthood (Hudsmith & Thorne 2007, van Deyk et al. 2010). Several countries in Europe and North America have established education programs for CHD patients and these programs have proven capable of enhancing patients’ disease knowledge effectively (Brown et al. 2012, Valente et al. 2012, Zupancic et al. 2012). Therefore, considering western experience, a major topic for future research and clinical practice in Taiwan and other Asian countries is the development of educational programs and intervention strategies appropriate for various cognitive development levels that would provide early assistance enabling CHD patients to understand themselves and no longer exist.
Discussion This study indicates that the life experiences of CHD patients from adolescence to early adulthood are like living with invisible defects. They had an incomplete understanding of their diseases and only identified their needs after experiencing setbacks and anxieties, eventually progressing towards coexistence with their disease.
The existence of imperfect understanding Previous studies have indicated that a lack of disease knowledge is a constant problem for CHD patients of any age group (Veldtman et al. 2000, Moons et al. 2001, 2009, Chessa et al. 2005, Simko et al. 2006, van Deyk et al. 2010). In this study, the patients lacked sufficient understanding of disease sequelae and complication prevention, medication precautions and the reasons for regular followup visits with physicians. These findings are consistent with those reported by previous studies conducted in other countries. © 2014 John Wiley & Sons Ltd
Conflicts in interpersonal situations The frustrations caused by tensions in interpersonal situations were related to embarrassments the patients experienced frequently. This study found that parents struggled to relinquish control of their children during the transition phase, leading to strained relationships between patients and their parents. The causes of relationship strain were primarily inconsistencies in disease focus and exposure and parents being unwilling to relinquish control despite their children’s desire for independence. The patients’ parents were not interviewed for this study. Thus, this study lacks a bilateral understanding of parent–child interactions. The parents had cared for the patients as they matured from childhood and, thus, were typically the people who best understood the patients’ conditions. The parents could become supporters, consultants and even experts, assisting their children in achieving independence during the transition phase (Ross & Fleck 2007). However, Moons et al. (2009) indicated that parents typically experienced greater 605
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difficulty adjusting to the transition period than their children experienced. Although parents’ degrees of involvement and roles in the transition phase have been addressed (Hudsmith & Thorne 2007, Ross & Fleck 2007, Moons et al. 2009), the majority of these studies lack empirical support. Future research can include patients’ parents to provide a deeper understanding of their disease care experiences and the quality of parent-child interactions. This may improve the effects of role transitions for parents and children, specifically, transforming concern into encouragement for patients in adolescence and early adulthood pursuing independence and autonomy. About peer relationships, strong friendships and interactions improve the self-identity of adolescents with CHD (Rassart et al. 2012). However, this study indicates that approximately half of the patients had experienced alienation, ridicule and strange looks from friends because of their CHD. Several patients began abusing drugs, alcohol and other substances because they failed to gain the approval of their peers. A negative self-identity and peer relationships increased the difficulty of living with and adapting to the disease, ultimately influencing patients’ mental health and quality of life (Kovacs et al. 2005, Luyckx et al. 2012). Therefore, patients’ peer relationships require greater attention. If necessary, counselling should be provided to assist patients in adolescence and early adulthood to establish appropriate supportive friendships.
Transitional care needs In the present study, more than half of the interviewees were uncomfortable in paediatric clinics and began to consider a healthcare transition. In contrast to Moons et al. (2009), this study found that although the patients were concerned about their discomfort in paediatric clinics, the majority expressed unwillingness to transition to adult care systems. Their worries included leaving familiar environments, losing their sense of trust, the need to rebuild physician-patient relationships and a fear that adult cardiologists did not understand CHD and would misjudge their conditions. Therefore, they would not leave paediatric cardiology unless absolutely necessary. In reality, the medical care demands of patients entering early adulthood differ from those of childhood patients. One patient interviewed in this study felt helpless from the lack of holistic recommendations when deciding whether to have an abortion, despite seeking opinions in obstetrics, adult medicine and paediatric cardiology. However, paediatric cardiology cannot satisfy all of patients’ healthcare needs, including pregnancy assessments in particular. Therefore, integrated interdisciplinary 606
care must be provided for assistance and support (Hudsmith & Thorne 2007, Ross & Fleck 2007, Marelli & Gurvitz 2011, Windram & Oechslin 2012). Maintaining privacy is the most crucial ethical concern in CHD care (Kirkpatrick et al. 2012). The health passport is a tool promoted in adult CHD care (Jalkut & Allen 2009, Kovacs et al. 2012, Windram & Oechslin 2012). However, patients in this study had never read their health passports carefully and raised the crucial point that they were difficult to carry and likely to expose their personal information. A previous study addressing similar topics has been conducted (Goossens et al. 2013). Therefore, the search for alternatives is a topic of increasing interest. The patients in this study suggested implementing health identity cards that give an introduction to the disease, disease management, routine care and other information. When necessary, chip card readers could be used to assist healthcare workers or the patients themselves in understanding the context of their disease. Thus, patients’ disease privacy can be maintained while increasing their self-understanding of the disease.
Positive coping strategies The results of this study show that although the patients had experienced life shocks due to their illnesses, the majority ultimately developed positive coping strategies for coexisting with their disease. Regarding the coping strategies, this study identified a search for spiritual support. During the interviews, several patients mentioned their fear of death and facing the limitations of life. Few studies have addressed the spiritual demands of CHD patients. Existing care guidelines also rarely mention this topic. Thus, consideration of spirituality may be included in future care plans.
Limitations Purposive sampling was adopted to recruit the research participants for this study. Although 35 patients with every level of disease complexity were interviewed, they were recruited from only two medical centres in Northern Taiwan. The care policies and quality at hospitals of varying levels differ. In addition, age and gender issues were not specifically considered when analysing. These factors influence the life experiences of patients. Therefore, the results of this study cannot be extended to all CHD patients. Although no new themes had emerged by the conclusion of the final interview, complete data saturation cannot be concluded due to differences in outpatient visits, © 2014 John Wiley & Sons Ltd
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hospitalizations and repeated surgeries between patients. Therefore, further interviews of patients with experiences in different contexts can be conducted to achieve a more comprehensive understanding.
Conclusion This study investigated the life experiences of CHD patients between adolescence and early adulthood. The results indicate that this involves a dynamic process between partial understanding and gradual coexistence with the disease. For patients, this was like living with invisible defects. The patients experienced setbacks in interpersonal situations, leading to a loss of balance and increasing anxiety. However, ultimately, they identified their unmet needs and developed positive coping strategies to slowly reach a state of coexistence with their disease. The results of this study can serve as a reference for improving care guidelines and developing localized intervention strategies targeted to the transition period between adolescence and adulthood. The patients should be provided with multi-disciplined care and spiritual support should not be ignored in helping patients adapt to changes occurring in the transition period.
Acknowledgements The authors gratefully thank all the study participants for their participation.
Funding This study was funded by the National Science Council, grant number NSC 101-2314-B-030-006-MY2.
Conflict of interest No conflict of interest has been declared by the authors.
Author contributions All authors have agreed on the final version and meet at least one of the following criteria [recommended by the ICMJE (http://www.icmje.org/ethical_1author.html)]:
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substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; drafting the article or revising it critically for important intellectual content.
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Adolescents with congenital heart disease
References Berghammer M., Dellborg M. & Ekman I. (2006) Young adults experiences of living with congenital heart disease. International Journal of Cardiology 110, 340–347. Brown N.M., Maul T., Reed H., Clayton S. & Cook S. (2012) Obstacles in the newly established adult congenital heart disease program: finding from a study conducted in western pennsylvania. Journal of the American College of Cardiology 59, E785. Chessa M., de Rosa G., Pardeo M., Negura G.D., Butera G., Feslova V., Piazza L., Giamberti A., Bossone E. & Carminati M. (2005) Illness understanding in adults with congenital heart disease. Italian Federation of Cardiology 6, 895–899. Claessens P., Moons P., de Casterl B.D., Cannaerts N., Budts W. & Gewillig M. (2005) What does it mean to live with a congenital heart disease? A qualitative study on the lived experiences of adult patients. European Journal of Cardiovascular Nursing 4, 3–10. van Deyk K., Pelgrims E., Troost E., Goossens E., Budts W., Gewillig M. & Moons P. (2010) Adolescents’ understanding of their congenital heart disease on transfer to adult-focused care. The American Journal of Cardiology 106, 1803–1807. Giorgi A., (ed.) (1985) A Phenomenology and Psychological Research. Duquesne University Press, Pittsburgh, PA. Goossens E., van Deyk K., Kenis A., Budts W., Gewillig M. & Moons P. (2013) The impact of an individualized patient health passport on disease-related knowledge in adolescents with congenital heart disease. European Journal of Cardiovascular Nursing 12, S47. Hudsmith L.E. & Thorne S.A. (2007) Transition of care from paediatric to adult services in cardiology. Archives of Disease in Childhood 92, 927–930. Jalkut M.K. & Allen P.J. (2009) Transition from pediatric to adult health care for adolescents with congenital heart disease: a review of the literature and clinical implications. Pediatric Nursing 35, 381–387. Kirkpatrick J.N., Kim Y.Y. & Kaufman B.D. (2012) Ethics priorities in adult congenital heart disease. Progress in Cardiovascular Diseases 55, 266–273. Kovacs A.H., Sears S.F. & Saidi A.S. (2005) Biopsychosocial experiences of adults with congenital heart disease: review of the literature. American Heart Journal 150, 193–201. Kovacs A.H., Cullen-Dean G., Aiello S., Wasyliw C., Harrison J.L., Li Q. & Oechslin E.N. (2012) The Toronto congenital heart disease transition task force. Progress in Pediatric Cardiology 34, 21–26. Lincoln Y.S. & Guba E.G. (1985) Naturalistic Inquiry. Sage, Beverly Hills, CA. van der Linde D., Konings E.E.M., Slager M.A., Witsenburg M., Helbing W.A., Takkenberg J.J.M. & Roos-Hesselink J.W. (2011) Birth prevalence of congenital heart disease worldwide: a systematic review and meta-analysis. Journal of the American College of Cardiology 58, 2241–2247. Luyckx K., Missotten L., Goossens E. & Moons P. (2012) Individual and contextual determinants of quality of life in adolescents with congenital heart disease. Journal of Adolescent Health 51, 122–128. Marelli A.J. & Gurvitz M. (2011) From numbers to guidelines. Progress in Cardiovascular Diseases 53, 239–246. 607
Y.-T. Chiang et al. Marelli A.J., Mackie A.S., Ionescu-Ittu R., Rahme E. & Pilote L. (2007) Congenital heart disease in the general population: canging prevalence and age distribution. Circulation 115, 163– 172. Moons P., de Volder E., Budts W., de Geest S., Elen J., Waeytens K. & Gewillig M. (2001) What do adult patients with congenital heart disease know about their disease, treatment and prevention of complications? A call for structured patient education. Heart 86, 74–80. Moons P., Pinxten S., Dedroog D., van Deyk K., Gewillig M., Hilderson D. & Budts W. (2009) Expectations and experiences of adolescents with congenital heart disease on being transferred from pediatric cardiology to an adult congenital heart disease program. Journal of Adolescent Health 44, 316–322. Moons P., Bovijn L., Budts W., Belmans A. & Gewillig M. (2010) Temporal trends in survival to adulthood among patients born with congenital heart disease from 1970 to 1992 in Belgium clinical perspective. Circulation 122, 2264–2272. Mu P.F. (1996) Phenomenology. Nursing Research (Chinese) 4, 195–202. Rassart J., Luyckx K., Apers S., Goossens E. & Moons P. (2012) Identity dynamics and peer relationship quality in adolescents with a chronic disease: the sample case of congenital heart disease. Journal of Developmental & Behavioral Pediatrics 33, 625–632. Ross H.M. & Fleck D. (2007) Clinical considerations for allied professionals: issues in transition to adult conginital heart disease programs. Heart Rhythm 4, 811–813. Schoormans D., Sprangers M.A.G., Pieper P.G., van Melle J.P., van Dijk A.P.J., Sieswerda G.T., Hulsbergen-Zwarts M.S., Plokker T.H.W.M., Brunninkhuis L.G.H., Vliegen H.W. & Mulder B.J.M. (2011) The perspective of patients with congenital heart disease: does health care meet their needs? Congenital Heart Disease 6, 219–227. Shearer K., Rempel G.R., Norris C.M. & Magill-Evans J. (2013) ‘It’s no big deal’: adolescents with congenital heart disease. Journal of Pediatric Nursing 28, 28–36.
Silversides C.K., Marelli A., Beauchesne L., Dore A., Kiess M., Salehian O., Bradley T., Colman J., Connelly M. & Harris L. (2010) Canadian cardiovascular society 2009 consensus conference on the management of adults with congenital heart disease: executive summary. Canadian Journal of Cardiology 26, 143–150. Simko L.C., Mcginnis K.A. & Schembri J. (2006) Educational needs of adults with congenital heart disease. Journal of Cardiovascular Nursing 21, 85–94. Valente A.M., Gianola A., Harmon A.J., Webb G., Ting J.G., Stout K., Opotowsky A., Kuehl K., Khairy P., Kay J., Earing M., Aboulhosn J., Cook S., Broberg C., Tappen A.V., Landzberg M. & Gurvitz M. (2012) Improving heart disease knowledge and research participation in adult with congenital heart disease (the Heart, Health, Education and Access Research Trail: HEARTACHD). Journal of the American College of Cardiology 59, E784. Veldtman G.R., Matley S.L., Kendall L., Quirk J., Gibbs J.L., Parsons J.M. & Hewison J. (2000) Illness understanding in children and adolescents with heart disease. Heart 84, 395–397. Warnes C.A., Liberthson R., Danielson G.K., Dore A., Harris L., Hoffman J.I., Somerville J., Williams R.G. & Webb G.D. (2001) Task force 1: the changing profile of congenital heart disease in adult life. Journal of the American College of Cardiology 37, 1170–1175. Windram J.D. & Oechslin E.N. (2012) Comprehensive patient care best serves the adult with congenital heart disease. Progress in Pediatric Cardiology 34, 61–65. Winter M.M., Mulder B.J.M. & Van der Velde E.T. (2010) Letter by Winter et al regarding article, ‘Children and adults with congenital heart disease lost to follow-up: who and when?’. Circulation 121, e252. Zupancic N., van Deyk K., Goossens E., Budts W. & Moons P. (2012) Structured education of adolescents and adults with congenital heart disease improves patients’ level of knowledge on their condition, treatment and preventive measures. Circulation 125, E829.
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Between invisible defects and visible impact: the life experiences of adolescents and young adults with congenital heart disease Yueh-Tao Chiang, Chi-Wen Chen, Wen-Jen Su, Jou-Kou Wang, Chun-Wei Lu, Yuh-Fen Li & Philip Moons Accepted for publication 6 September 2014
Correspondence to C.-W. Chen: e-mail: [email protected] Yueh-Tao Chiang MS RN Doctoral Candidate Graduate Institute of Clinical Medical Sciences, Chang Gung University, Taoyuan, Taiwan Chi-Wen Chen PhD RN Associate Professor School of Nursing, National Yang-Ming University, Taipei, Taiwan Wen-Jen Su MD Associate Professor Department of Pediatric, Chang Gung Children’s Hospital, Taoyuan, Taiwan Jou-Kou Wang MD PhD Professor Department of Pediatrics, College of Medicine, National Taiwan University, Taipei, Taiwan Chun-Wei Lu MD Instructor Department of Pediatrics, College of Medicine, National Taiwan University, Taipei, Taiwan Yuh-Fen Li BS RN Head Nurse Department of Nursing, Chang Gung Children’s Hospital, Taoyuan, Taiwan Philip Moons PhD RN Professor Department of Public Health and Primary Care, KU Leuven-University of Leuven, Belgium
© 2014 John Wiley & Sons Ltd
CHIANG Y.-T., CHEN C.-W., SU W.-J., WANG J.-K., LU C.-W., LI Y.-F. & M O O N S P . ( 2 0 1 5 ) Between invisible defects and visible impact: the life experiences of adolescents and young adults with congenital heart disease. Journal of Advanced Nursing 71(3), 599–608. doi: 10.1111/jan.12546
Abstract Aim. To describe the life experiences of adolescents and young adults with congenital heart disease. Background. Owing to medical advances, most children with congenital heart disease are expected to survive into adulthood. The transitional development from adolescence to adult is the critical period for fostering self-care. Design. Descriptive phenomenological study. Methods. Thirty-five patients of 15–24 years old with congenital heart disease were recruited from paediatric cardiology clinics by purposive sampling. They were individually interviewed between October 2012–February 2013 using a semi-structured interview guideline and joined adult congenital heart disease clinics at two medical centres in northern Taiwan. The data were analysed using descriptive phenomenological method developed by Giorgi. Findings. The essence of the life experience of adolescents and young adults with congenital heart disease involves a dynamic process of moving between invisible defects and coexistence with the disease. Six themes emerged: (1) invisible defects: the existence of imperfect understanding; (2) conflict: interpersonal frustrations; (3) imbalance: the loss of self-balance; (4) suffering: increasing anxiety; (5) encounters: meeting needs; and (6) coexistence: positive coping strategies. Conclusion. As patients with congenital heart disease transition from adolescence into adulthood, they must learn about their disease, overcome frustration and anxiety and develop self-care strategies for coexisting with congenital heart disease. Results of this study may serve as clinical care guidelines for adolescents and young adults with congenital heart disease and give a reference for developing transitional intervention strategies. Keywords: adolescent, congenital heart disease, nursing, transition, young adults
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Why is this research needed? ● Currently, there are more adults than children with congenital heart disease. ● Adolescents and young adults face a transitional phase between childhood and adulthood. ● Examining the life experiences of individual adolescent and early adult patients is essential for developing self-care measures to assist with disease adaptation and increase the quality of care.
What are the key findings? ● The life experiences of patients with congenital heart disease from adolescence to early adulthood involve dynamic processes between invisible defects and coexistence with the disease. ● These patients experience setbacks in interpersonal situations, leading to a loss of balance and increasing anxiety. ● They identify their needs and develop positive coping strategies to slowly reach a state of coexistence with their disease.
How should the findings be used to influence policy/ practice/research/education? ● An integrated interdisciplinary care plan must be provided for assistance and support. ● Counselling should be provided to assist patients in adolescence and early adulthood to establish appropriate supportive friendships. ● Consideration of spirituality may be included in future care plans.
Introduction Congenital heart disease (CHD) is the most common type of congenital disorder, with a prevalence of 91 for every 1000 live births and the prevalence of CHD is higher in Asian countries than in Europe and North America (van der Linde et al. 2011). CHD can be divided into three types based on the relative complexity of patients’ defects – mild, moderate or complex. With the exception of repaired minor patent ductus arteriosus, all defects, regardless of severity, require lifelong tracking to monitor changes in disease (Warnes et al. 2001). Advances in medical care have enabled nearly 90% of CHD patients to survive into adulthood (Moons et al. 2010). Currently, there are more adults than children with CHD (Marelli et al. 2007, Silversides et al. 2010, Winter et al. 2010). 600
Background Adolescents and young adults face a transitional phase between childhood and adulthood. This involves a transition from ‘child-centred’ health care to ‘adult-oriented’ care (Hudsmith & Thorne 2007). During transition to adulthood, adolescents and young adults may encounter a series of complex problems related to, for example, sex, marriage, pregnancy and employment (Ross & Fleck 2007). The provision of individualized care should be based on an understanding of these patients’ experiences. Therefore, examining the life experiences of individual adolescent and young adult patients is essential for developing care measures to assist with disease adaptation and increase the quality of care. Several studies from Europe and North America have addressed the life experience of CHD patients. Claessens et al. (2005) performed qualitative interviews with young adult patients between ages 25–40. These interviews indicated that the life of adult CHD patients is a process of achieving normalization. In another study, CHD patients between ages 22–39 were interviewed. The results indicated that the patients’ lives were filled with contradictions and an urgent desire for health. Thus, the patients hid their physical conditions from medical staff and deliberately ignored the existence of their disease (Berghammer et al. 2006). Shearer et al. (2013) interviewed CHD patients between ages 13–17 and found that their life experiences were similar to those of their peers. The most substantial influence of CHD on their lives was their use of various methods to feel the same as others, avoid alienation in friendships and maintain normal interactions (Shearer et al. 2013). The only study that employed structured questionnaires to investigate the self-perceived care needs of adult CHD patients found that the existing quality of care met their needs (Schoormans et al. 2011). However, the patients also reported that the communication skills of physicians appeared to be lacking and could be improved. Evidence from the above studies demonstrates that the life experiences of CHD patients involve contradictory processes of seeking normalization. Adolescents invariably encounter the development of peer relationships and changes in the roles of their parents. Although these studies provide a satisfactory understanding of CHD patients’ life experiences, knowledge gaps remain. First, the cited studies were all conducted in western countries. Eastern and western countries differ substantially in their environments, cultures, medical resource distribution, healthcare policies and health insurance systems. Furthermore, research has particularly emphasized adult life experience in CHD patients. © 2014 John Wiley & Sons Ltd
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Therefore, the life experience of adolescents and young adults with CHD must be explored further. Accordingly, this study investigated CHD patients’ life experiences from adolescence to early adulthood. The results may provide a reference for further developing this healthcare intervention stage and localizing clinical care.
The study Aim The aim of this study was to describe the life experiences of adolescents and young adults with congenital heart disease.
Design To understand the living experience in real world of adolescents and young adult with CHD, descriptive phenomenology was adopted (Giorgi 1985, Mu 1996).
Sample/participants Purposive sampling was used to select participants. Thirtyfive adolescents and young adults with CHD were recruited from paediatric cardiology clinics and joined adult congenital heart disease clinics at two medical centres in northern Taiwan. The inclusion criteria were: (1) had CHD diagnosed by a paediatric cardiologist by the age of 2 years, which demonstrates the context of growing up with CHD; (2) were aged 15–24 years; (3) could speak Mandarin; and (4) with their legal representative (parent or guardian), gave written informed consent for the interview to be recorded. Considering that patients with chromosomal abnormalities or major injuries and diseases have different life experiences than patients with congenital heart diseases, patients who had any chromosomal abnormalities or other major disease (e.g. Down syndrome or epilepsy) were excluded. During the course of the study, the interview data were continuously examined to ensure generality. The items checked included severity of the disease, gender and age. After the 33rd subject, no additional themes emerged. As there were relatively fewer female interviewees, two more female participants were interviewed to ensure that the data were saturated. The sample included 21 males and 14 females. The participants ranged in ages from 15–24 (mean = 200 years); the body mass index (BMI) of participants showed that 17 had healthy weight, 2 were underweight, 10 were overweight, 3 were mildly obese and 3 were moderately obese. Based on criteria of the 32nd Bethesda Conference (Warnes et al. 2001), the complexity of © 2014 John Wiley & Sons Ltd
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CHD included 40% simple, 372% moderate and 228% exceptionally complex. Only six participants had never undergone surgical intervention.
Data collection The study was conducted from October 2012–February 2013. Data were collected by two researchers who had experience in paediatric nursing and were trained in qualitative research. Based on the philosophical perspectives of descriptive phenomenology (Giorgi 1985, Mu 1996), the interviewer needed to establish a trusting relationship with participants to gain rich descriptions of their experiences. For participants coming from clinical settings, some level of trust had been established previously because one of the data collectors had data collection experience in the same clinic for 4 years. The data of the present study were collected using a semi-structured questionnaire. The interview guide was established based on published literature and discussion with experts. After interviewing two participants, one additional question ‘Do you have any suggestions for the medical staff?’ was added into the official interview guide (Table 1). The interviews took place in a quiet meeting room with minimal interruptions after the researcher explained the purpose and procedure of the study and obtained the consent of the subject and his/her guardian. Audio and written records of the interview, which recorded non-verbal behaviour of participants, were kept. To maintain the quality of the data collection, each interview was limited to one subject. Whether the participants were adult or not, all participants were interviewed separately after explaining and clarifying any doubts of their guardians. Before the interview officially started, the researcher and the subject would first have unstructured conversations to help the subject relax. The interview did not have a time limit and only ended when the subject deemed that he or she had described his/her experienced sufficiently or when the subject ended the interview. The subject and the interviewer though the clinic were already familiar with each
Table 1 Interview guide. 1. What are the impacts in daily life about living with congenital heart disease? 2. What do you worry about your congenital heart disease? 3. Which clinic are you follow-up now? How do you feel? 4. What kinds of medical resources (support) do you need now? 5. As growing up, maybe you need transfer to adult cardiology, How do you feel? 6. Do you have any recommendations for health care?
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The study proposal was approved by the Institutional Review Board of two participating medical centres in Taiwan. All procedures respect the rights of the participants and ethics as an utmost priority. All included patients and/or their parents or guardians provided signed informed consent.
(1985) during data analysis. The data were collected with an open attitude. The contents of the tape recordings of interviews were confirmed at least twice along with the written field notes and the participants’ reflective journal to ensure the credibility of data. The analytical procedure was followed strictly and the written and field records were peer-reviewed to assure dependability of the data analysis. The present study used purposive sampling to ensure the range of the participants and improve the transferability of the data. During the study, the subjective opinions and biases of the researchers were recorded. Through data restoration, the data were analysed objectively and research history was carefully maintained to achieve data conformability.
Data analysis
Results
The data were analysed using descriptive phenomenological method developed by Giorgi (1985). The five steps of data analysis are illustrated by an exemplar in Table 2.
The study participants ranged in age from 15–24 years. The life experiences of CHD patients from adolescence to early adulthood involve dynamic processes between invisible defects and coexistence with the disease. Results of this study address the following six themes: Invisible defects: the existence of imperfect understanding; conflict: interpersonal frustrations; imbalances: the loss of self-balance; suffering: increasing anxiety; encounter: meeting of needs; and coexistence: positive coping strategies.
other to a certain extent and were able to openly discuss the participants’’ experiences. Therefore, sufficient data were able to be acquired after only one interview with each subject. These interviews generally took 45 minutes, ranging between 17–93 minutes.
Ethical considerations
Rigour The rigour of the present study referenced the qualitative research rigour standard introduced by Lincoln and Guba
Table 2 An exemplar for the processes of data analysis. Step 1: Reading the text to obtain a sense of the narrative Step 2: Extracting the meaning units Step 3: These meaning units were examined to gain a sense of and comprehensively
Step 4: Meaning units were transformed into psychological language
Step 5: Specific subcategories were related to general themes
Meaning unit
Psychological language
Subcategories
Themes
No. . ..just go with the flow. . .Ah. . .. after surgery everything went well, my parents didn’t tell me anything and I never asked any question about my heart (C31-1-16~24). There was several years interrupted tracking with my heart disease. Chest discomfort had occurred, I thought it was caused by pregnancy and no more attention. Apart from chest tightness, everything was fine. . . I did not know it related to my heart disease.(C34-9-20~10-6) If one of my friends catch a cold, I’ll wear a mask to prevent being infected. Oh. . . adopt strategies to protect myself is very important. (C10-18-1-2) If I just died so young, I will place hope on next transmigration. (C07-26-3~5)
Protagonist of the disease, supporting role of knowledge.
Silent protagonist erroneous understanding
1. Invisible defects: the existence of imperfect understanding
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1. Invisible defects: the existence of imperfect understanding
Lost to follow due to lack of understanding
Adopt strategies to protect self
Self-protection
6. Coexistence: positive coping strategies
Pinned in reincarnation
Seeking for spiritual support
6. Coexistence: positive coping strategies
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Invisible defects: the existence of imperfect understanding For participants in this study, CHD was similar to invisible defects bestowed on them at birth. However, only five of the patients, approximately 14% of the sample, provided the correct names of their diseases and the treatments they had received. In the course of medical treatment, 28 of the patients, 80% of the interviewees, had never asked a question of their own initiative. They were unclear of their own restrictions and unable to envision the potential problems they could face in the future:
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relinquish control, leading to extreme emotion. The ‘disease’ label influenced the development of their peer relationships: After my teachers and coaches mentioned it to me, I was furious. I returned to my mother and said, ‘Did I not tell you not to mention it to anyone?’ She replied that she was concerned about me. I then told her, ‘You are worried. . .you might as well just go die. Why are you so worried? If you act like this, the whole school will think that I am an idiot. (C11) Everyone always said that I was a freak just because I have heart disease. The parents of my friends told them not to play with me.
Patients with heart disease look the same as anyone else! I just have
They were afraid that if something happened, they would be unable
different parts inside and I do not seem to want to know this unless
to take responsibility for it. How can parents directly hurt another
I feel unwell. (C10)
child like this? (C12)
My surgeries were all successful and I have not sought to understand it. This is because I did not know anything when I was young. My parents did not say anything to me and neither did my physicians. They spoke only with my mother. I only learnt the word ‘Fallot’ (i.e. Tetrology of Fallot, a congenital heart disease) when I was 17. (C31)
Several patients had misperceptions of their diseases. Four patients with diseases of varying complexity mistakenly believed that their diseases had been cured after treatment and that they did not need medical treatment in the absence of symptoms. Thus, they stopped monitoring their own conditions for some time. Two of the patients understood the importance of regular physician visits only after they were hospitalized when their symptoms worsened: I just felt. . .that my condition was not bad. After a surgery I had when I was 9, then I did not follow-up for several years. My mother told me I did not have any symptoms. More than 10 years later. . .when I was 17 or 18, I gradually began to monitor my condition. Because I experienced chest tightness, I went to an emergency department. (C12)
Regarding complexity of the defects, several patients were lost to follow-up because of these misperceptions, failing to return to their physicians until symptoms manifested.
Conflict: interpersonal frustrations The majority of the patients began learning to be independent from their parents when transitioning from adolescence to early adulthood. As they began exploring their freedom, they typically experienced repeated conflicts in interpersonal situations because of the disclosure of their CHD at school. Some of their parents struggled to © 2014 John Wiley & Sons Ltd
The patients were also prevented from developing relationships with the opposite sex because of their illnesses. Sometimes patients were concerned about their current needs; but meanwhile physicians might focus on their future health issues. Inconsistency in disease attention between physicians and patients led to feelings of frustration and unmet needs among the patients. In addition, excessive concern and restriction from other people and unsympathetic treatment, such as colleagues doubting their work ability, public disclosure of their condition and strange looks from friends and relatives were difficult for the patients to tolerate.
Imbalances: the loss of self-balance Several patients expressed negative views of their physical limitations. They believed that their disease impaired their abilities at both school and work. Nearly half of the patients elected to ignore their disease and health, even engaging in health damaging behaviours that lead to obesity and other problems. Four of them began to smoke and consume alcohol, ignoring the effects on their bodies. They did detrimental things to prove that their disease did not affect them. They frequently struggled and lost their sense of balance in various situations: I do not want other people to know. It is humiliating. I have to cover up the scars. . .I have a single view on my heart disease, a more negative view, because I feel that it is a burden. (C06) Later, I just felt that I was fine, why do you think of me this way? Thus, I began to go astray in junior high school. I messed around with everything I could. I smoked, drank alcohol, chewed betel nut and took narcotics. I did ketamine, amphetamines, marijuana and 603
Y.-T. Chiang et al. MDMA. . .I took narcotics until I had no money left, then I sold drugs, fought, became a debt collector, I did everything bad that could be done. I was chased by the police. I was just looking for money. If I was even okay with doing drugs, I would be able to do anything. (C11)
However, they were concerned with the problems of transitioning from paediatric care to adult care, including potential misjudgments of their conditions resulting from a lack of trust, the need to rebuild physician-patient relationships, unfamiliar medical environments and adult cardiologists’ lack of familiarity with their defects.
When my classmates were all pushing me, I could do nothing but go try it once. Therefore, I really tried it and felt like I nearly died. It was like I had really walked through the gates of hell, as other people say. It was so strong that I felt I was nearly killed. My face was pale and my heart seemed to have no strength left. . .everyone was scared. (C18)
Some of the patients’ self-control during their adolescence was extremely weak. They even exceeded their limits in peer involvement because they could not withstand the pressure from friends, resulting in unbearable consequences.
Suffering: increasing anxiety The patients were worried about uncertainty in their illnesses and the reappearance of disease symptoms, including chest tightness, chest pain, cardiac arrhythmia and unstable blood pressure. Regardless of age or gender, some patients had faced or considered problems with employment (11/ 35), finances (8/35), marriage (9/35), reproduction (13/35) and inheritability of CHD (16/35). They worried that their physical conditions would influence them. Death was also their greatest fear (13/35):
Encounter: meeting needs In the process of moving towards autonomy in health, the patients’ experiences in life and in dealing with their diseases enabled themselves to gradually identify their own needs. Several patients suggested designing health passports or health identity cards to establish individualized health information and increase patients’ understanding of their diseases. These would be ready to use during emergencies: Some things should be put on a card like an identity card. . .like disease information, then problems that the disease may cause, contact numbers for physicians, hospitals, counselling agencies and medical institutions. Include contact methods, at least for a patient service. They can be called when emergencies occur to instruct us on what to do. (C28)
However, one patient with a health passport from one of the clinics had yet to read its content carefully and said that it facilitated the exposure of private information: I have it; it is that blue book (health passport). I only flipped
I am worried about something. . .if that the defect in my heart has
through it and have not read it carefully. . .Does carrying this not
increased or something similar, that I will need surgery. (C20)
tell other people that I have heart disease? Think of another method. . .. (C32)
Can I have children? I do not know. I am afraid that my heart will not be strong enough when that happens. . .that I will not be able to bear the child inside of me. If I get pregnant and the physician estimates that labour is impossible, should I have an abortion? Additionally, would my children have CHD? (C05) In pediatric medicine. . .other parents give me puzzled looks (laughs). Naturally, they think that my presence is strange. Yes, although I am becoming an adult, I feel that my physician here in pediatric medicine best understands my condition. I am also worried that my next physician may not understand my physical condition. We also have to develop familiarity. . .. (C17)
Although Taiwan established its first adult CHD clinic in February 2009, only 7 participants (20%) in the present study were undergoing disease management at this facility. The majority of participants continued to visit physicians in paediatric cardiology. However, approximately half of the patients felt somewhat uncomfortable in paediatric clinics. 604
Other healthcare needs reported by the interviewees included providing digitalized medical resource platforms such as apps for CHD patients; developing medical services that are integrated across multiple disciplines; introducing telemedicine to reduce the gap between urban and rural health care; enhancing disease and resource advocacy through, for example, broad installation and promotion of automated external defibrillators; establishing flexible educational resources and counselling; and carefully naming social welfare policies, for example, renaming the catastrophic illness certificate ‘the welfare card,’ to reduce negatively labelling patients.
Coexistence: positive coping strategies With each past growing experience, the majority of patients recognized that their diseases were irreversible and that controlling their disease was preferable to being controlled © 2014 John Wiley & Sons Ltd
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by the disease. Therefore, they adopted positive coping strategies. They developed healthy attitudes, identified their limitations and protected themselves to maintain optimal physical health. The patients seized opportunities to demonstrate their strength and pursued independence to reach a state of coexistence with their disease: Being your own master is better than being controlled by a disease. Naturally, self-reliance is necessary. Physicians provide only opinions. You are still the most important factor. If you think you are a sick person then you will become a sick person. You must care for yourself and trust that you can care for yourself. (C20) Just do my best and do not let other people look down on me. I must take action to make others think that I have no problems. If I appear on television 1 day, doing something like James and Chef Ah-Chi, I will openly tell people that I have heart disease, but not to look down on me. (C11)
Three patients obtained tranquillity and peace of mind through reciting mantras and anticipating reincarnation: It felt like my heart was going up and down and that I was going to have a heart attack and die when I was on an airplane taking off and landing. . .I then quickly recited the Bodhisattva. Yes. . .it is a bit like helping yourself become calmer. (C12)
When unable to exceed limitations or experiencing distress, patients sought to support themselves spiritually and attain peace of mind.
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The research data collected in the present study indicate that although the patients were the main actors in their diseases, they said that they played supporting roles. Few of the patients were the main targets for explanations of their conditions, which may have been due to the immature cognitive development of paediatric patients and active involvement from parents. These reasons explain why the majority of the patients had limited understanding of their diseases during this stage. Therefore, encouraging patients to participate in disease discussions and providing comprehensible disease information based on patients’ cognitive development is crucial for enhancing patients’ self-understanding. Although the link between regular follow-up visits and patients’ diseases and health outcomes requires additional empirical evidence, adequate disease knowledge is a crucial foundation for health self-management during the transition from adolescence to early adulthood (Hudsmith & Thorne 2007, van Deyk et al. 2010). Several countries in Europe and North America have established education programs for CHD patients and these programs have proven capable of enhancing patients’ disease knowledge effectively (Brown et al. 2012, Valente et al. 2012, Zupancic et al. 2012). Therefore, considering western experience, a major topic for future research and clinical practice in Taiwan and other Asian countries is the development of educational programs and intervention strategies appropriate for various cognitive development levels that would provide early assistance enabling CHD patients to understand themselves and no longer exist.
Discussion This study indicates that the life experiences of CHD patients from adolescence to early adulthood are like living with invisible defects. They had an incomplete understanding of their diseases and only identified their needs after experiencing setbacks and anxieties, eventually progressing towards coexistence with their disease.
The existence of imperfect understanding Previous studies have indicated that a lack of disease knowledge is a constant problem for CHD patients of any age group (Veldtman et al. 2000, Moons et al. 2001, 2009, Chessa et al. 2005, Simko et al. 2006, van Deyk et al. 2010). In this study, the patients lacked sufficient understanding of disease sequelae and complication prevention, medication precautions and the reasons for regular followup visits with physicians. These findings are consistent with those reported by previous studies conducted in other countries. © 2014 John Wiley & Sons Ltd
Conflicts in interpersonal situations The frustrations caused by tensions in interpersonal situations were related to embarrassments the patients experienced frequently. This study found that parents struggled to relinquish control of their children during the transition phase, leading to strained relationships between patients and their parents. The causes of relationship strain were primarily inconsistencies in disease focus and exposure and parents being unwilling to relinquish control despite their children’s desire for independence. The patients’ parents were not interviewed for this study. Thus, this study lacks a bilateral understanding of parent–child interactions. The parents had cared for the patients as they matured from childhood and, thus, were typically the people who best understood the patients’ conditions. The parents could become supporters, consultants and even experts, assisting their children in achieving independence during the transition phase (Ross & Fleck 2007). However, Moons et al. (2009) indicated that parents typically experienced greater 605
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difficulty adjusting to the transition period than their children experienced. Although parents’ degrees of involvement and roles in the transition phase have been addressed (Hudsmith & Thorne 2007, Ross & Fleck 2007, Moons et al. 2009), the majority of these studies lack empirical support. Future research can include patients’ parents to provide a deeper understanding of their disease care experiences and the quality of parent-child interactions. This may improve the effects of role transitions for parents and children, specifically, transforming concern into encouragement for patients in adolescence and early adulthood pursuing independence and autonomy. About peer relationships, strong friendships and interactions improve the self-identity of adolescents with CHD (Rassart et al. 2012). However, this study indicates that approximately half of the patients had experienced alienation, ridicule and strange looks from friends because of their CHD. Several patients began abusing drugs, alcohol and other substances because they failed to gain the approval of their peers. A negative self-identity and peer relationships increased the difficulty of living with and adapting to the disease, ultimately influencing patients’ mental health and quality of life (Kovacs et al. 2005, Luyckx et al. 2012). Therefore, patients’ peer relationships require greater attention. If necessary, counselling should be provided to assist patients in adolescence and early adulthood to establish appropriate supportive friendships.
Transitional care needs In the present study, more than half of the interviewees were uncomfortable in paediatric clinics and began to consider a healthcare transition. In contrast to Moons et al. (2009), this study found that although the patients were concerned about their discomfort in paediatric clinics, the majority expressed unwillingness to transition to adult care systems. Their worries included leaving familiar environments, losing their sense of trust, the need to rebuild physician-patient relationships and a fear that adult cardiologists did not understand CHD and would misjudge their conditions. Therefore, they would not leave paediatric cardiology unless absolutely necessary. In reality, the medical care demands of patients entering early adulthood differ from those of childhood patients. One patient interviewed in this study felt helpless from the lack of holistic recommendations when deciding whether to have an abortion, despite seeking opinions in obstetrics, adult medicine and paediatric cardiology. However, paediatric cardiology cannot satisfy all of patients’ healthcare needs, including pregnancy assessments in particular. Therefore, integrated interdisciplinary 606
care must be provided for assistance and support (Hudsmith & Thorne 2007, Ross & Fleck 2007, Marelli & Gurvitz 2011, Windram & Oechslin 2012). Maintaining privacy is the most crucial ethical concern in CHD care (Kirkpatrick et al. 2012). The health passport is a tool promoted in adult CHD care (Jalkut & Allen 2009, Kovacs et al. 2012, Windram & Oechslin 2012). However, patients in this study had never read their health passports carefully and raised the crucial point that they were difficult to carry and likely to expose their personal information. A previous study addressing similar topics has been conducted (Goossens et al. 2013). Therefore, the search for alternatives is a topic of increasing interest. The patients in this study suggested implementing health identity cards that give an introduction to the disease, disease management, routine care and other information. When necessary, chip card readers could be used to assist healthcare workers or the patients themselves in understanding the context of their disease. Thus, patients’ disease privacy can be maintained while increasing their self-understanding of the disease.
Positive coping strategies The results of this study show that although the patients had experienced life shocks due to their illnesses, the majority ultimately developed positive coping strategies for coexisting with their disease. Regarding the coping strategies, this study identified a search for spiritual support. During the interviews, several patients mentioned their fear of death and facing the limitations of life. Few studies have addressed the spiritual demands of CHD patients. Existing care guidelines also rarely mention this topic. Thus, consideration of spirituality may be included in future care plans.
Limitations Purposive sampling was adopted to recruit the research participants for this study. Although 35 patients with every level of disease complexity were interviewed, they were recruited from only two medical centres in Northern Taiwan. The care policies and quality at hospitals of varying levels differ. In addition, age and gender issues were not specifically considered when analysing. These factors influence the life experiences of patients. Therefore, the results of this study cannot be extended to all CHD patients. Although no new themes had emerged by the conclusion of the final interview, complete data saturation cannot be concluded due to differences in outpatient visits, © 2014 John Wiley & Sons Ltd
JAN: ORIGINAL RESEARCH: EMPIRICAL RESEARCH – QUALITATIVE
hospitalizations and repeated surgeries between patients. Therefore, further interviews of patients with experiences in different contexts can be conducted to achieve a more comprehensive understanding.
Conclusion This study investigated the life experiences of CHD patients between adolescence and early adulthood. The results indicate that this involves a dynamic process between partial understanding and gradual coexistence with the disease. For patients, this was like living with invisible defects. The patients experienced setbacks in interpersonal situations, leading to a loss of balance and increasing anxiety. However, ultimately, they identified their unmet needs and developed positive coping strategies to slowly reach a state of coexistence with their disease. The results of this study can serve as a reference for improving care guidelines and developing localized intervention strategies targeted to the transition period between adolescence and adulthood. The patients should be provided with multi-disciplined care and spiritual support should not be ignored in helping patients adapt to changes occurring in the transition period.
Acknowledgements The authors gratefully thank all the study participants for their participation.
Funding This study was funded by the National Science Council, grant number NSC 101-2314-B-030-006-MY2.
Conflict of interest No conflict of interest has been declared by the authors.
Author contributions All authors have agreed on the final version and meet at least one of the following criteria [recommended by the ICMJE (http://www.icmje.org/ethical_1author.html)]:
• •
substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; drafting the article or revising it critically for important intellectual content.
© 2014 John Wiley & Sons Ltd
Adolescents with congenital heart disease
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