Abstract
The psychological impact of living with congenital heart disease in adulthood was explored using semi-structured interviews with seven adults. Participants described living with congenital heart disease as a constant and limiting presence, which impacts upon the relationship with self and others. Psychological and emotional reactions ranged from depression, shame, trauma, lack of control and an ongoing struggle with issues of uncertainty and life expectancy. Various coping strategies were identified such as denial and overcompensation. Participants reported that they were not psychologically supported by health professionals. Implications of findings are discussed with regard to service provision.
Introduction
According to the British Heart Foundation, there are approximately 4600 babies born each year with congenital heart disease (CHD) in the United Kingdom. The last four decades has seen a transformation in the care and survival of individuals born with CHD. The precise prevalence of congenital heart malformations in the adult population is unknown. The British Cardiac Society Working Party on grown-up congenital heart (GUCH) disease recently conducted such an analysis. It was estimated that in 2000, there were just below 150,000 adults with CHD in the United Kingdom. Of these, around 11,500 had the more complex forms of the disease, requiring lifelong expert care and intervention. Petersen et al. (2003) highlight that in the 1950s, only approximately one in five children born with serious heart conditions reached adulthood. This survival rate has risen to approximately 80 per cent in recent years. Treatment for CHD has evolved substantially over the last four decades, with the development of many new surgical and cardiac catheterisation techniques. Some mild congenital heart conditions repair themselves without needing treatment. However, the majority of cases do need treatment, and this varies depending on the type and complexity of the congenital abnormality. Most conditions are treated with one or a combination of surgery, cardiac catheterisation or medication.
The impact of these advancements, as noted, has meant that a new whole demographic has emerged that simply did not exist before, and there are now approximately 150,000 people with CHD aged over 16 years living in the United Kingdom. Furthermore, it is estimated that the number of adults with CHD in the United Kingdom will continue to grow causing significant increase in the demand for GUCH disease services in the United Kingdom (Petersen et al., 2003). The impact of these advancements has meant that a new demographic has emerged that simply did not exist before.
For those individuals surviving into adulthood, they not only bear the physical scars of their disease but also the psychological and emotional scars, which are typically ‘unseen’. Medical intervention has been priority in order to save and prolong physical well-being. The unfortunate side effect of this is that the ‘hidden’ emotional aspect has remained relatively unidentified and, consequently, unexplored. Most of the research into the psychological and emotional impacts of CHD has focused upon infancy, childhood and adolescent developmental stages. This is due to the fact that adults living with CHD are an emerging population.
Findings from studies carried out across these developmental trajectories show that children and adolescents experience a range of psychological and emotional reactions such as fear, anxiety, behavioural problems and negative impact upon the relationship between parent and child due to repeated hospital admission and the ongoing medical and surgical interventions causing parental anxiety and over protectiveness (Gupta et al., 1998; Spijkerboer et al., 2008). During adolescence, additional psychological and emotional reactions emerge. These range from poor body image, low self-esteem, depression, interpersonal difficulties with peers resulting in fear of rejection, ridicule, isolation, loneliness, exclusion and ongoing fear over the future in regard to relationships, health and ongoing treatments (McMurray et al., 2001; Masi and Brouedani, 1999; Tong et al., 1998). As the long-term survival expectations were previously low, research by Lyons (2006) revealed that adolescents were not made aware of the challenges that adulthood could present such as issues pertaining to sexuality, reproduction and the physical limitations that may prevent them from living and achieving social independence.
Drawing upon these research findings, it is clear that each developmental stage carries the risk of experiencing psychological and emotional difficulties that may result in a ‘cumulative’ deleterious psychological impact, as difficulties encountered during each developmental stage are carried over into the next causing a potential compounding psychological and emotional negative effects.
Although research among adults is scarce mainly in part due to the fact that survival rates have been low and that the emotional impact has remained hidden, findings from the few studies to date provide a chink of insight into the difficulties experienced during adulthood. Ongoing fear of further surgery and life expectancy come sharper into focus (Tong et al., 1998). Feelings of shock, disappointment, anger, worry, difficulty in talking about their feelings and fears can occur and, for females in particular, issues relating to pregnancy and childbirth may emerge, which can result in a negative impact upon their female identity (Horner et al., 2000). Feelings of inadequacy, powerlessness and perceptions of being different from others are experienced. Feeling controlled by their disease in terms of making decisions about what careers to choose, hobbies and having children have been reported. Difficulties in the development and maintenance of social relationships are also experienced (Claessensa et al., 2005). Research in other areas exploring the psychological impact of living with chronic health problems has been carried out and findings reveal similar psychosocial and emotional detrimental effects (Bergvik et al., 2010; Bull and Grogan, 2010; Hilgart et al., 2012; Williams et al., 2011). However, findings from these other areas cannot necessarily be extrapolated to those individuals living with CHD, and therefore, it is necessary to explore further the unique, lived experience of living with this devastating, lifelong illness in its own right.
Furthermore, in recent years, there has been increasing recognition of the importance of prioritising the emotional health of adults with CHD in their overall care. In addition, the realisation that facilities and professionals with appropriate training are scarce in the field. For example, The British Cardiac Society Working Party (2002) report emphasised the need for psychological provision of care. They recommended that every adult should have access to a nurse specialist or counsellor at outpatient clinic. This was some 10 years ago, and therefore, it is important to explore further the specific psychological and emotional challenges that this population experience and whether or not such recommended service provision is actually available or indeed beneficial. Furthermore, Bromberg et al. (2003) highlight that even when adults appear to be well adjusted to their disease, there is a significant amount of unrecognised psychiatric problems. If psychological and psychiatric problems remain unrecognised, in addition to the challenges of living with the disease in adulthood with the ongoing difficulties this presents, it is reasonable to speculate that more maladjustment may occur as sufferers grow older (Bromberg et al., 2003). However, it could equally be argued that as they grow older, they develop a sense of mastery over their condition and develop adaptive coping strategies to manage the psychological and emotional reactions.
The aim of this study was to gain a greater understanding of the lived experience of having CHD as an adult, in order to gain insight into the nature of the psychological and emotional distress endured, coping strategies employed and to establish what, if any, psychological support has been available and would be of benefit to them. Such information is not only useful for medical professionals involved in the physical care of CHD sufferers and service providers but also counsellors and other psychological therapists who encounter individuals during routine clinical practice suffering from CHD.
Method
A qualitative methodology was employed in the current study. The methodological tenets of interpretive phenomenological analysis (IPA) bore consistent with the aims of the research in gaining an insight and understanding of the individual experience of having CHD. Inductive approach of IPA allows an in-depth investigation of how participants make sense of their lived experience as it is informed by phenomenology and thus concerned with ‘attempting to capture the particular experience as experienced for particular people’ (Smith, 2009: 17). In line with the research genre, seven semi-structured interviews lasting approximately 1 hour were conducted as the aim was to capture the ‘description of the life world of interviewee with respect to interpreting the meaning of the described phenomenon’ (Kvale, 1996: 6).
Seven individuals took part in this research. As can be seen from Table 1, five were female and two were male. This is in keeping with the IPA approach that is idiographic and conducted in small sample sizes (Smith and Osborn, 2003). All those interviewed for this study were over the age of 21 years and had surgery for various forms of CHD ranging from minor to more complex conditions. Out of the seven participants, two had required surgery as babies, two had surgery in childhood and three had undergone surgery in adulthood, even though they were born with their conditions.
Participant details.
Procedure
Following granting of ethical approval by the university’s Ethics Committee, the first author (L.C.) contacted two support groups by telephone requesting that an advert be placed on their website inviting individuals to take part in the research. Participants were purposively selected on the basis that they were adults (aged more than 18 years) with CHD. One participant was recruited via this strategy. As IPA is an idiographic approach concerned with understanding particular phenomena in a particular context, Smith (2009: 48) points out how potential participants can be ‘referred by other participants’. Thus, the details of the research were passed by the initial interviewee to friends and colleagues. This ‘snowball’ strategy yielded a further six participants who contacted the researcher requesting to take part in the study. An interview guide was developed in order to keep with the overall objectives of the study (Kvale, 1996). It comprised eight open-ended questions designed to elicit views regarding the psychological impact of living with CHD (e.g. ‘How has living with CHD impacted on your mental well-being?’) and access and availability of emotional support (e.g. Have you ever received counselling regarding issues directly relating to your CHD?’). However, these preset questions did not predetermine the themes from emanating from the data obtained nor restrict spontaneous emergence of other issues.
Interviews were carried out by the first author (L.C.) at the request of interviewees in their own home at a time that was suitable. Interviews were recorded. Participants were provided with an information leaflet that informed them of the nature of the study, issues pertaining to consent and confidentiality, contact details of the authors and follow-up details of organisations in the event that discussing such personal and sensitive details triggered distress (Sarontakos, 2005). To ensure confidentiality and anonymity, names and background details have been altered in order to protect participant identity and any information that could potentially identify an individual participant was removed. Pseudonyms were adopted for participants using an alphabetical system (Anne, Becky, Claire, Dee, Ellen, Frank and George). Recording and transcripts were stored in a locked cabinet, and documents were password protected.
Data analysis
The researcher was guided during the data analysis phase by Smith et al. (2009), Smith and Osborn (2003) and Elliott et al. (1999), all of whom highlight that the process of analysis is not prescriptive but rather it must be a flexible approach that allows for the researcher to use their own creativity in regard to the analysis. The data analysis process comprised four distinct phases, which was checked by the second author (J.S.) at each step. The initial stage of the analysis involved becoming immersed in the data, engaging with the script of each participant in a line-by-line reading and re-reading of the transcript. In keeping with the idiographic approach of IPA, this process was done on a case-by-case basis. The process involved taking an inquisitive mindset to identify, describe, and taking note of any significant or interesting phenomena, commonalities, differences, connections, contradictions or preliminary interpretations. Stage 2 involved repeating this process and initial notes being transformed into emerging themes in an attempt to capture the essence of what was found. In the third phase, development of these themes and looking for connections occurred, which is a process that requires a whittling down of the material and pulling out particular phrases that encapsulate what is being said. It involves taking the analysis to a slightly higher level of abstraction, which involves a deeper interpretative mindset. Concepts or themes that emerged had to be directly linked back to participant’s words in the original transcript resulting in a collaborative data being produced. In the final process of the data analysis, each group of themes was given a superordinate theme title and sub-themes identified.
Reflexive analysis
The researcher’s values, beliefs, culture and life experience influence and permeate every stage of the research journey (Herman, 2010). With this in mind, it is important to acknowledge that one of the authors (L.C.) was born with complex CHD and has had two open-heart procedures. Having successfully reached adulthood, much of the motivation for conducting this piece of research was grounded in the wish that those with CHD are given an opportunity to ‘voice’ their experiences and how it has impacted their lives psychologically and emotionally. This personal, lived experience influenced not only the first author’s topic of investigation but also the selected methodology. Hermeneutics and the theory of interpretation allow the researcher using IPA to engage the notion that knowledge can be developed through a process of interpretation and empathic understanding.
Results
Six master themes emerged from the analysis and are shown in Table 2. These were (1) a constant, limiting presence, (2) the psychological experience, (3) view of the self, (4) impact on relationships, (5) coping strategies and (6) help and support. The master themes and sub-themes are further expanded upon in a narrative form with verbatim extracts from the interviews used to illustrate the themes.
Master themes and sub-themes.
CHD: congenital heart disease.
A constant, limiting presence
Six of the seven participants reported that the illness was in some way a constant, limiting presence in their life, as if it was carried with them, with continual reminders being their physical limitations and scars:
You know it’s there, there’s never going to be an end to it; you’re never going to get better … it’s integrated into your whole being … every day you see the scars and you can’t forget about it Dee
Living with CHD in adulthood
The sub-theme of living with CHD in adulthood emerged as participants talked about how the disease had impacted on them at various life stages. The adulthood experience had brought new and different challenges compared to childhood or adolescence:
‘cos I’m older now, married, you’re whole perspective on life is different … I would be scared of what is going to happen more so now because I’m married and I have a dependent as such Dee
Participants described how, after a lifetime of illness and operations, there was a sense of being tired of not feeling well, the medical interventions and the day-to-day stresses the disease brings, thus highlighting a sense of despondency, hopelessness and wanting to give up:
Sometimes, there are days you think, oh, I just can’t do this anymore Ellen
Another elaborated on this:
I must admit the older I get, I know it sounds stupid but especially when you’ve had something from so young, I so get tired with it Dee
Living with uncertainty
Despite the life expectancy of those living with CHD having increased exponentially in the last few decades, there is still a great deal of uncertainty and unpredictability present. One participant described how as a child she and her parents were told:
You may not make it into adulthood or far into adulthood … Every time they operated was to prolong life but you were never guaranteed, just kind of depended what science brought Dee
The unpredictability of CHD was illustrated in the case of one participant, who at the age of 32 years has experienced a traumatic aortic dissection which she had been unprepared for by medical specialists:
I was angry at not being warned, it was the fear of it happening again, and I know it could happen again … It’s the not knowing I can’t deal with Anne
A lack of control was expressed by another participant:
There is a sense of being out of control … I can control everything else, well as far as possible … there is something in that … it’s out of my control when it’s going to go downhill and I hate that, I hate that Ellen
In contrast to the uncertainty, one participant indicated that the only certainty with CHD was that there was no cure for it:
Things may get a little harder, they will deteriorate … the only certainty is that you are not going to get better Dee
Psychological experience
Participants were asked about the psychological experience of CHD and the effect it had on their mental health. A number of sub-themes emerged are as follows:
Depression
Five participants made reference to having varying levels of depression associated with their cardiac condition. For example, one participant experienced depression when confronted with the limitations of the illness:
It can get you down sometimes like, like when you can’t do things other people can do … I do get down alot George
The process of living with a life-threatening illness can be an isolating experience that can lead to depressive episodes:
You do feel really low, very low and it does take over your life … constantly asking why me? … it can be very, very lonely and frightening … there are times when you really get down about it Dee
Shame
Feelings of shame about having the condition were identified as a result of the restrictions that living with the illness imposed:
I can’t do the same things and you know … I’m ashamed of it George
A traumatic experience
Four of the participants had recently endured sudden, unexpected cardiac episodes, resulting in life-saving surgical intervention. One participant recalled:
I was terrified, I was practically unconscious, all these voices … I could hear mum and dad crying and the priest was there, it was frightening, extremely frightening … there still is that fear that it could happen again … you know the fear is terrible Anne
One participant was diagnosed with post-traumatic stress disorder after enduring traumatic events when a procedure went wrong. She described how the trauma of being awake when she required life-saving emergency surgery, recalling hearing what the medical team were saying and feeling them work inside her and the smell of her skin being burnt:
It was classed as Post Traumatic Stress … It’s the trauma you go through Dee
Existential issues: life and death
All of those interviewed had required some type of life-saving surgery. The theme of dying or being close to death was highlighted:
When you’re older and things start to go wrong and get a sense of your own mortality big time … when you have CHD it happens a lot younger Anne
After repeated operations and complications, one participant described how she became preoccupied with the fear of dying saying:
I was so lost in the fear of my own mortality … I was convinced the grim reaper was following me Dee
One participant recounted that now that she was married and had children she had prepared herself for the possibility of an early death:
If I go tomorrow I have everything organised Ellen
In contrast, all of the participants spoke of their experiences also enhancing their lives and bringing a certain awareness of the value of life and a sense that they had to make their life worthwhile:
Your life is precious and until something like that happens to you, you just take it for granted … It has made everything make sense, it makes me feel I can do anything Claire
One participant spoke about how he felt to be alive:
because I am alive I sort of feel I have to do something with it Frank
Another recounted how the condition affirmed his life:
It’s made me a better person in terms of the quality of life I try and live. It means so much to me to make the most of my life George
Impact on view of the self
A further overarching theme that emerged from the data related to the perception of self in relation to others.
Being different
Feeling different from ‘normal’ people was expressed:
You are always different, you’re never going to do the same as everyone else … you were bullied in school for being different
The desire to have a ‘normal’ life was profound:
The only time you’ll be normal is when you’re in your own house curled up … trying to convince myself that I can be normal, I can have a proper life Dee
Self-image
What became apparent from participants was that their self-image was intrinsically influenced by their illness. The physical scars left by surgery and other medical interventions influenced participants’ body image:
The scarring was really bad … looked just revolting, absolutely vile Claire
One participant, who had undergone multiple surgeries, talked about how the scarring had significantly impacted on her self-confidence and body image:
It’s embarrassing; your whole chest has been cut left, right and centre … I view myself as being broken, all cut up Dee
The illness also immensely impacted on participants’ self-worth resulting in the experience of deeply negative opinions of themselves:
I’ve always felt I’m faulty, I don’t fit in, you’re an outcast … I’ve always felt like a reject George
Impact on relationships
The CHD sufferer’s relationship with others was severely impacted upon and emerged as an overarching theme comprising the following sub-themes.
Protection
The sub-theme of protection arose in two ways when the issue of relationships was discussed. Participants recalled how they felt at times overprotected by their family.
My mum would have wrapped me up in cotton wool Becky
However, participants also felt a strong desire to protect those close to them:
I protect them from it … I love them so I don’t want them to worry Anne
One participant also discussed how she hid her feelings from her family and friends in order to protect them:
I do hide it, the emotion and stuff. I would hide it and convince people that I was coping Dee
Self-disclosure
The decision of how and when to tell people about their CHD and the implications of doing so emerged as an issue that presented many challenges for participants in this study. There was strong reticence for some of the participant in telling others for fear of being judged or rejected by others.
I wouldn’t share it willy-nilly because people can be very judgmental Dee
However, there was also a need to tell others who were close to them about their condition so that they were informed in case medical assistance was needed.
I feel I have to tell people about it … I think that’s for my own peace of mind Anne
One participant talked about his reluctance in building relationships with others:
You don’t know how people will react to you … I’m pretty sort of cagey … I don’t have the confidence to build relationships Frank
One participant found it difficult to tell others for fear of rejection:
I felt like, I tell you, you won’t want to hang out with me anymore George
Coping
Various coping mechanisms were deployed by participants to cope with their illness, albeit not necessarily adaptive.
Denial
Denial as a coping mechanism could be identified in some of the participants:
I don’t really think it has affected me. I don’t really talk about it … Dad would give off, you drink too much or you shouldn’t be doing that with your heart, sure just cracked on Becky
One participant described how she wore a ‘mask’ to hide her feelings and to pretend everything was ‘normal’:
It’s a mask, it’s your alter ego … I’m normal just like everyone else, you know the denial part, you are completely sick … you’re in complete denial and try to be something that you’re not Dee
Overcompensation
Overcompensating for their illness in other areas of life emerged as a sub-theme as a coping mechanism. For example:
I’m really competitive, like about school work, sports and stuff I get into … I really over compensate in other areas where I can Frank
One participant stated how she tried extra hard in her career in order to appear normal and had made herself ill in the process:
You really push yourself to that extra limit to the point where you are nearly risking yourself Dee
Knowledge
The importance of gaining knowledge about their condition was conveyed, which could be construed as a positive or adaptive strategy:
I cope by knowledge and learning about the condition Anne
Help and support
The need for help and support emerged as a master theme with discrepancy between what was received and what they perceived to be needed highlighted.
Help and support received
Most of the help and support participants had was from family:
Mum and dad have supported me right from the word go, really hasn’t been any emotional support apart from family Anne
As suggested, despite most participants saying that they had family support, there appeared to be a reluctance to talk to anyone about their feelings and emotions. Overall, seeking professional help was thought not to be an option.
I never thought about getting it (counselling) because you just plod on … you always think counselling is for the mentally ill … I never considered it … I never ever thought that anything was related to my condition apart from the physical … never thought the anxiety or feeling down would have anything to do with it Ellen
Help and support needed
Many of the participants stated that they would not be comfortable talking to their cardiac consultant about their feeling or emotions:
I don’t like really going into the feelings and what not with them Anne
When asked what kind of support they would have liked all of the participants agreed that they would have liked to have had group support from fellow CHD survivors:
I want to talk to someone who can say well I’ve had a heart disease … more like a support group George
Discussion
The aim of this study was to explore the adult experience of living with CHD and the emotional and psychological effects associated with this lifelong, debilitating condition. An additional focus was to explore the coping strategies employed and to establish what kind of support those who lived with the disease availed of, what they perceive to be helpful or what they needed.
Results from this study revealed that living with CHD becomes an enduring presence, accompanying the individual throughout life from infancy, childhood, adolescence and into adulthood, with no sense of reprieve or respite. Thus, it is reasonable to speculate that there is ‘cumulative negative effect’ in that there is a carry-over of psychological and emotional difficulties from childhood such as poor body image and impaired social functioning, as repeatedly demonstrated through research conducted during earlier life stages (Masi and Brouedani, 1999; Tong et al., 1998). As they enter adulthood, sufferers face additional challenges as it was clear from the findings here that as participants grew older, there was an increasing realisation of the possibility of their health deteriorating further, thus creating new kinds of worries and stresses. Yet, despite participants knowing about their conditions from a young age, the onset of complications had still come as a shock and one for which they were not prepared for. Tong et al. (1998) acknowledge the uncertainty that those with CHD can experience in adulthood especially concerning issues such as further surgery, treatment or life expectancy. For participants in this study, this led to existential issues or crises relating to death, as their own mortality came sharper into focus resulting in a need to prepare for dying. These findings add to those of Horner et al. (2000) who found that there is often a sense of disappointment at not being ‘cured’ and uncertainty over what the future may hold. Feelings of uncertainty over the future are typically reported among individuals with various other chronic health-related issues. For example, Hilgart et al. (2012) used IPA to study individual experiences of genetic test results for familial hypercholesterolaemia found that patients also experienced feeling of ‘being in limbo’ and a great deal of uncertainty as to what the future held for them and their family.
Tong et al. (2008) highlight that it is imperative that health-care professionals have an awareness and understanding of these issues so that appropriate psychological care is established for individuals suffering from CHD. Despite this and despite recommendations by The British Cardiac Society Working Party (2002) report some 10 years ago, it seems that based on the findings from participants in this study, little psychological and emotional support is available. Most emotional support came from the participant’s family, which in itself is of concern as this may place an additional burden on family members. Furthermore, participants conveyed that they tended not to verbalise their internal thoughts, worries and fears surrounding their condition despite the fact that they struggled with feelings of depression, shame and even symptoms of psychological trauma as a result of the medical procedures. In a study carried out by Bromberg et al. (2003), evidence of a diagnosable psychiatric problem among a third of participants was found and a quarter met the criteria for problematic emotional functioning. Furthermore, results from the same study revealed that even when adults appear to be seemingly well adjusted to their disease, there is still a significant amount of unrecognised psychiatric problems. If this is the case, problems may go unrecognised because cardiologists are not trained to identify never mind diagnose mental health issues, as their focus is on the physical health of the patients. Moreover, patients will often not talk to their physician about issues as they see them as unrelated to their heart conditions (Bromberg et al., 2003). Findings from this study support this view as respondents reported that they did not link their emotional difficulties to their heart disease. Although time constraints prevented a more in-depth study of the patient/consultant relationship, it could be argued that often a consultant will have known the patient and their families from birth and as the relationship between doctor and patient often has been likened to a parent/child quality, is typically based on crisis intervention and promoting ongoing physical well-being, patients may be prevented from openly discussing emotional issues with their consultants. Consequently, support from professionals involved in their care is often based on medical information. Based on the findings here and in light of previous research findings, it is clear that despite increasing life expectancy due to advances in drug treatments and surgical interventions, psychological problems are prevalent as evident in reports of feeling ‘down’, feeling ashamed and experiences of procedures being traumatic. This clearly is of concern as sufferers may be struggling with emotional difficulties and at its extreme, psychiatric conditions, which unfortunately may go undetected.
Additional psychological reactions were reported, which related to feeling ‘different’ from others. This had a deleterious impact on relationships, as respondents reported fear of rejection by others or being judged unfavourably, which led to low self-confidence and a tendency to withdraw, as evident by a reported lack of self-disclosure. Research by Tong et al. (1998) found that many adolescents and young adults have never talked openly about their CHD either within or outside the family. Even though they long to, fear of rejection, ridicule or exclusion inhibits them from doing so. This study was conducted over 10 years ago, and taken with the current findings here, it seems that little has changed in that sufferers are still not talking about their CHD for fear of negative evaluation.
In an attempt to manage their psychological and emotional reactions, participants in this study reported that they attempted to appear ‘normal’ despite feeling ‘different’ via what could be perceived as adoption of maladaptive coping strategies. In Claessensa et al.’s (2005) study, it was found that sufferers of CHD cope with their condition through a process of ‘normalisation’ whereby the individual tries to prove themselves to others, challenge physical boundaries, compensate for their limitations, attempt to put things into perspective and get ahead of others. Findings generated from this current study also show that there is a tendency to overcompensate for perceived shortcomings as a result of the illness by becoming competitive and driven in other areas of life such as work or sport. According to Claessensa et al. (2005), this attempt at ‘normalisation’ stems from feelings of being different, the patient’s perception that their world is at conflict with that of healthy peers.
As noted, the psychological ramification of living with a chronic health problem is not unique to individuals suffering from CHD. Findings from other areas of research that have examined the psychological impact of living with chronic health problems show that viewing the self as ‘different’ or ‘wrong’, feeling misunderstood, feeling excluded by peers, difficulty disclosing their condition and need for support are not uncommon experiences (Hilgart et al., 2012; Williams et al., 2011). This suggests a commonality of experiences across various chronic health sufferers.
When considering the type of emotional support that is actually available, it was clear from the findings that the provision of such support is somewhat of a double-edged sword. However, while respondents reported a difficulty disclosing to others their feelings, there was an expressed need for emotional support, in particular, by way of some type of group support whereby their thoughts, feelings and experiences could be shared with fellow sufferers.
Emotional support was often sought solely from family members, but was complicated by the patient often feeling that they had to ‘protect’ their family members from their internal thoughts, feelings and emotions. Arguably, there was also a perception among respondents that to seek support was ‘weak’ and they had failed at surviving if they had emotional as well as physical scars. Consequently, in its absence, for participants in this study, maladaptive coping strategies are employed in order to cope. For example, denying the realities of their illness and the physical and mental impacts of CHD was prevalent for many of the participants. Some knew the realities but in an attempt to cope they put on a ‘mask’ in order to pretend that they were in better mental or physical health than they actually are. Horner et al. (2000) found that denial is commonly reported as a means to cope with CHD, and this continues to be used as a coping mechanism throughout the life cycle. Arguably, denial can be both positive and negative. Denying their condition can allow participants to in some way to feel more normal and pursue normal lives. However, denying the mental and physical realities can have a negative impact. As noted, respondents talked about pushing themselves beyond their physical limitations in order to appear ‘normal’, often becoming ill in the process. Participants talked about trying to prove themselves, challenge their physical limitations and get ahead of others.
In contrast, however, what could be regarded as a positive coping strategy emerged in that participants attempted to seek information about their condition, thus emphasising the need for information and advice on the illness. Yet, this could also be viewed as dangerous in that seeking too much information could lead to conflicting advice and confusion. In a study conducted by Bergvik et al. (2010) examining the relevance of approach/avoidance coping and Regulatory Focus Theory (RFT) in individuals who had coronary artery bypass graft surgery, it was found that participants employed various avoidant strategies in order to cope such as neglecting symptoms, delaying help-seeking and avoiding thoughts. More adaptive or ‘approach’ strategies such as mental preparation for surgery, seeking an accurate diagnosis and seeking information on their condition were also reported. Participants in this study also found that seeking accurate information about their condition helped them cope and helped others understand. Based on these current and previous research findings, it seems that appropriate information and advice from qualified professionals are warranted.
Limitations
This study like any research endeavour is not without its shortcomings. The researchers acknowledge that the qualitative method lends a subjective interpretation of the data that emerged. The fact that the first author is a sufferer of CHD influenced not only the topic of investigation and methodology but also the types of questions asked during the semi-structured interview process, which may have been biased by her own experiences. However, as Herman (2010) points out, the decision to undertake a particular line of research enquiry is often driven by the researcher’s values, feelings, culture and history, thus making it a personal matter. While it is to some extent a ‘personal matter’, the researcher sought to ‘bracket off’ her own assumptions, beliefs and experiences during the interview process, which is in keeping with an IPA approach. To minimise further any personal tainting, the first author debriefed with the second author on a regular basis to ensure that an objective approach was upheld. A further limitation relates to the fact that respondents were self-selecting and therefore do not represent all individuals diagnosed with CHD. Interpretation of the findings requires consideration in light of these various factors.
Nonetheless, on a positive note, participants in this study do provide some critical insight into the psychological and emotional effects that this devastating and debilitating illness poses and the lack of emotional support available. The findings add to the growing research in this area, and this information is useful in order to inform service providers of service user needs when considering not only the physical care of CHD sufferers but also their mental health.
Conclusions
Findings from this current study reveal that individuals suffering from CHD experience psychological and emotional difficulties such as depression, symptoms of trauma, shame and lack of control. Participants struggled with existential issues concerning life and death, which were something they had not encountered earlier nor did they perceive they were adequately prepared for. A ‘cumulative negative effect’ is apparent in so far as difficulties carried over from childhood and adolescence are evident such as poor confidence and body image. Of concern were the maladaptive coping strategies such as denial, which are employed by participants in this study. Lack of support from service providers regarding psychological and emotional issues was clear, while an expressed need for emotional support, information and advice from such service providers was highlighted, in particular by way of support groups. It is anticipated that these findings will serve as a springboard for future research in this neglected area. Future research should seek to explore the psychological impact further, and emphasis placed on traumatic growth potential would also add to this critical and interesting research domain as features of growth were evident in that there was a greater appreciation of life (Tedeschi and Calhoun, 2004).
Overall, these findings shed light on the psychological and emotional issues CHD sufferers endure, which will help to inform service providers, counsellors and other psychological therapists who encounter individuals with a CHD.
Footnotes
Acknowledgements
The authors would like to acknowledge all those participants who freely gave their time to take part in this research and professional staff in the field of congenital heart disease who were consulted during the early stages of this research study.
Funding
This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.