Abstract
Keywords
“To question something is to interrogate something from the ‘
A key focus of this paper is the researcher ‘as instrument’ concept and how that informed a rich tapestry of the phenomenon. IPA first captured my attention [PI] while studying different qualitative approaches to inform nursing research (i.e., descriptive vs. exploratory) and their relevancy to chronic heart disease. As a cardiac nurse and adult with chronic CHD, I approached the inquiry from both a clinician and patient perspective. Reading an article by Chambliss and Schutt (2015), the authors emphasized the need to “celebrate anomalies” (p. 231). Although CHD is referred to as heart ‘disease,’ it is about a ‘defect’ – an anatomical and physiological anomaly. Since CHD is present at birth, those of us affected do not know life any other way, except to know that we are
Decisions relevant to data collection and analyzing the emerging themes are discussed. Steps taken to mitigate the risks of developing an inauthentic representation of the phenomenon are also presented. We believe using IPA, with its roots grounded in hermeneutics, displays a novel insight that explains how individuals with chronic pediatric heart disease understand their experiences (Smith & Nizza, 2022) – how they
What is Interpretative Phenomenological Analysis?
Interpretative Phenomenological Analysis (IPA) is a contemporary philosophical framework that has become more prevalent in recent years, particularly in the psychological sciences (Kidd, 2002; Pietkiewicz & Smith, 2014). IPA integrates three philosophical principles: (a) phenomenology, (b) hermeneutics, and (c) idiography (Noon, 2018; Pietkiewicz & Smith, 2014; van Manen, 1997). van Manen (1997) describes phenomenology as how one orients to the lived experience while hermeneutics refers to how one interprets the “texts” (1997, p. 2) of the lived experience. Phenomenology makes one stop, recognize, and reflect (Aho & Aho, 2008) – think about
Heidegger (1962, 1995) first introduced the interpretative qualitative method to move beyond Husserl’s descriptive phenomenology. Since each of us is a product of our everyday world, to Heidegger, the ontological question was
The unpredictability of one’s cardiac condition in the presence of daily life events launch interpretative actions; that is,
Dawson and Sykes (2019) found one of the primary means to generating meaningful, logical structures includes the Heideggerian perspective of ‘fore’ (p. 101). The Heideggerian perspective refers to the ‘fore’-sight (‘before’) in creating connections and interpretations for past, present, and future knowledge relevant to the ‘things themselves’ (Heidegger, 1962) rather than perceived conceptions. The active interplay between one’s personal and social environments is explored and interpreted through direct narratives, but also through a psychological reference point. IPA is ideal for those “voices that may go unheard” (Noon, 2018, p. 80) and to place credence in those voices as the, “experiential expert” (Smith & Nizza, 2022, p. 6). These are important premises considering young adults are gaining autonomy in their role development. Healthy developmental transitions include several variables, such as personality, relationships, and structure (Arnett, 1998, 2010; Erikson, 1980; Nikitin et al., 2012).
Smith and Nizza (2022) posit IPA is ideal in populations facing major life events and those “living with a chronic illness” (p.4). In our study using IPA, we captured both the life event (an important, vulnerable developmental stage) and chronic health by exploring congenital (pediatric) heart disease. To further accentuate IPA’s appropriateness to our young adult cardiac sample, the ‘double hermeneutic’ embraced the primary author’s central role (Heidegger, 1962; Smith et al., 2009; Smith & Nizza, 2022) as ‘research instrument.’
Researcher as ‘Instrument’
One cannot bracket presuppositions, beliefs, and experiences since these also make up who we are and how we live. In this respect, IPA differs from other qualitative orientations where the researcher [brackets] personal experience and beliefs as if to set aside all these values. Neubauer et al. (2019) acknowledge hermeneutic phenomenology includes the researcher’s personal knowledge and experiences as a worldview that ‘cannot be eliminated’ (2019, p. 95). This, however, does not preclude the need for self-reflexivity to reconcile personal beliefs that could interfere with the idiographic analysis. With intention, reflexivity can be the impetus to transform subjectivity to opportunity (Finlay, 2008, p. 531). Patton (2002) describes the role of researcher as ‘instrument’, to “understanding the setting as an insider” while simultaneously “describing it to and for outsiders” (p. 268). With this in mind, I [PI] began journaling prior to study commencement and throughout each phase of the research process. Self-reflexivity became a very important piece (Finlay, 2008) since proximity to the research presented itself in more than one way: My personal knowledge and experiences in this area include: (a) adult CHD patient, (b) cardiac nurse, and (c) nurse scholar. This critical awareness was essential to the research.
I grasp the essence of researcher as ‘instrument’ (Tracy, 2020) as one living with CHD. Use of the first person - ‘I’ illuminates the presence of
‘I’d like to craft the IPA questions (keeping it open and unique to EACH participant) relevant to their age stage as a life change, in the context of the heart defect (illness representation) and how they perceive their These 2 ‘hats’ make it that much more important to address opinions because they have definitely emerged through the years. ‘I see CHD patients on our unit. They are like in their 30s and come in with end-stage heart failure. This hits home.’ Take care of yourself, consider the implications. We are not immortal just because we survived heart surgery when young. ‘I think…..reflect again today. I have such an appreciation for life. I do feel blessed to be a survivor and have the means to address my needs – I have great Drs and the contacts, as a nurse, to ensure I access quality care. But…. I am alone.’
Procedures for Data Collection
Personal experience, coupled with IPA’s methodological procedures, informed our research decisions. It was crucial to remember that IPA is not prescriptive. Rather, it is an iterative and reflexive interaction with the data that involves analyzing the data while collecting the data (Chambliss & Schutt, 2015). This is where we got to delve into the vulnerability of CHD – what it’s like to be viewed as a generalized ‘heart’ patient across the age spectrum, directing our research to be data focused, not theory driven (Noon, 2018; Pietkiewicz & Smith, 2014).
I think about medical trauma. I recall crying one time to my mom in preparation for yet another heart cath probably around age 8 or 9. I hated the dark, cold room, the long time on the hard table, and listening to loud machines, smelling betadine. I recall telling her, ‘I would rather have heart surgery than a cath!’
Sample
A purposive, homogeneous sample of young adults diagnosed with severe CHD were included in the study. This sampling strategy is necessary in IPA research to ensure the participants are more similar than they are different so that any differences are more common than they are diverse (Smith & Nizza, 2022, p. 14). Further, specific sample characteristics improve transferability (Smith & Nizza, 2022) and the emic perspectives of the participants (Pietkiewicz & Smith, 2014; Tuffour, 2017). Potential volunteers were recruited via gatekeeper referral (clinic medical director) from a Northwest regional CHD center in the United States. Study participants met the following eligibility criteria: (a) diagnosed with chronic CHD requiring life-long cardiac care, (b) history of at least one open heart surgery and/or catheter-based intervention(s) from childhood, (c) age 22 to 25, (d) English speaking, and (e) cognitively capable to engage in an interview.
IPA is not concerned with a predetermined sample size (Pietkiewicz & Smith, 2014) to ‘reach’ data saturation. Rather, it is about the depth and breadth of the data; intentionally keeping the sample size relatively small so that each case can be treated as its own detail. Guided by existing IPA scholars (Noon, 2018; Smith et al., 2009; Smith & Nizza, 2022; Tuffour, 2017), our goal was to achieve a sample size no larger than
Semi-structured Interviews
Drawing from the methodological procedures by Smith and Nizza (2022), the interview guide consisted of mostly open-ended questions using the evaluative, temporal structure; meaning questions were centered on the individual experience to follow the manifestations or ‘journey’ of early adulthood. Current recommendations include piloting the interview questions before securing multiple interviews. This strategy enabled me to gain a sense of the applicability of the questions, a general understanding, and the time it would take to complete the interview. Piloting commenced using ACHD trained nurses from the hospital setting. The only recommendation that ensued from the piloting strategy was to change the sequence of questions to minimize in-depth questioning at the outset.
Interviews occurred virtually using Zoom software ranging between 35 and 90 minutes. Virtual interviews were chosen to ensure individuals could participate without travel requirements. Although it is preferred to engage in person when conducting IPA research, it is most important the participant is comfortable to ‘speak freely’ (Smith & Nizza, 2022, p. 17). This precept was particularly important following the Covid-19 pandemic whereby some individuals may have still preferred social distancing. Support resources were available via the CHD medical team for those who may have indicated emotional and/or psychological distress. No participant requested services nor asked to pause or stop the interview. [ One of the female participants asked if I could send the questions before we talk so she could prepare. I have yet to run into this request. When I inquired about her reason, she simply said that she wanted to prepare in case the questions are personal (she wants to make sure her answers are private’). This supports CHD is a personal matter.
All participants agreed to permit use of their statements in the research to illustrate the authenticity of their ‘story’, or
A girl today shared that she never had anyone care or ask about her heart except her “heart Dr.…Not until she met me.” She went on to say, “Thank you for asking, and for caring.” Good (I thought) - this research is important.
Such proclamations support the use of the IPA method to explore topics that Smith and Nizza (2022) posit are important to those involved. Sample interview questions (with prompts) are illustrated in Figure 1. Because IPA is interpretative by the one ‘immersed in the data’ (van Manen, 1997) and the fundamental understanding that no two investigators will present the same interpretation (Smith & Nizza, 2022), I [PI], conducted all the interviews. Data collected case-by-case via semi-structured questions permitted flexibility in the interview to ensure capturing each person’s experience as a personal experience. The interview guide included prompts to ensure the dialogue took a meaningful direction and facilitated fluidity in participant responses. In this initial stage, every word was treated as potentially meaningful data. Although some participants were more conversational than others, all of them engaged well to candidly share their personal experience. Each session was saved as a video ‘closed captioned’ transcript. Audio recordings were typed verbatim, comparing the video to the Zoom transcript to generate a final Word document of the original interview. Italics and/or bold font were used to show changes in the participant’s tone of voice, emphatic proclamations, etc. Color coding was also used to highlight nonverbal communications (i.e., emotions, facial expressions). Each case was given a pseudonym instead of an ID number to personalize the story (using a gender appropriate name (i.e., ‘Nicole’) without using real names, or any of those verbalized by each participant.
It feels weird going through the interviews. It makes me want so badly to share my own story with them. They each know I am one of the cardiac unit nurses, but not that I am ‘one of them.’ I mean, in terms of relationship decisions, it’s tough going through what I do, alone. Especially since I am aging. And I have no one to talk to about my feelings. I must make note here as I reflect, I had more than a couple of participants indicate that if I would like to talk with their mom, she would be ‘better’ to explain. Interesting since I am not concerned about the medical Hx, per se. Rather, I care about how they are doing and what this is like for THEM – their feelings and perspectives. How they are doing without their parent(s) oversight. Sample semi-structured interview items.
A valuable aspect of this study that was apparent at the outset was the level of engagement from the participants. They engaged in a manner that demonstrated their trust to be honest, open, and vulnerable. Although I am ‘one of them,’ the participants were not aware. Years of experience as an acute care nurse; however, has taught me how to interact with intention (known as therapeutic communication). The data that emerged, made this point very clear. All statements were numbered to uphold evidence integrity.
Procedures for Data Analysis
Original transcripts were uploaded to a password protected Google share Drive in preparation for data analysis. A thorough cross check of each transcript honored the idiographic and inductive approach central to IPA research. This infers each interview stands as its own data, free of preconceived interpretations, or ‘theoretical constraint’ (Smith & Nizza, 2022, p. 31). Therefore, extensive time was taken with each interview to immerse in their ‘world’ (2022, p. 24); to make sense of how they (participants) understand themselves and their sense of agency. This beginning stage entailed looking for similarities and differences without formulating conclusions. Otherwise, we would be moving away from the fundamentals of iterative research. Initial thoughts to the text were documented, paying close attention to each word, phrase, or sentence, handwritten on a hard copy of the original transcript.
Once the initial thoughts were documented, the hard copy was discarded in a secure shredder and further analyses began via a coding table in the password protected Google Drive. Analyses included integrating original texts verbatim for data authentication. These steps were an ongoing process; intentionally taking time away from each case to return hours to days later for additional review – stop, pause, and reflect. Each review included PI self -reflexivity to help address any biases or personal perspectives (Finlay, 2002, 2008) that could misconstrue the interpretation of the data. Notetaking was crucial to the analysis phase. [ A male participant today shared that HE is the ONE who “can express what it’s like, “I’m the person living with it. Instead of going to Google and be like, Hey what does this mean?! I could be the actual person that actually tells you what’s real and what’s not.”
Notetaking
The value of notetaking cannot be underestimated. Handwritten notetaking led me to immerse myself in the data. Initial notetaking consisted of exploratory notes, which included: (a) descriptive, (b) linguistic, and (c) conceptual. Each transcript was reviewed in this manner, line-by-line as a single case analysis.
At no point was the process prescriptive. Guidelines exist to do just that: guide. IPA permitted flexibility to adapt to the participants while drawing upon researcher experiences. Notetaking evolved from initial exploratory reactions to participant accounts in the form of experiential narratives. Participant accounts were grouped into a logical structure to generate a column of each participant’s ‘experiential’ statements for the case’ (Smith & Nizza, 2022, p. 32). This detailed step was repeated until each case had a table of exploratory notes. The cross analysis via second member checking commenced.
Cross Analysis
Collaborations between myself and the second member [co-author], were intentionally scheduled at different dates to promote reflection and a thorough review of the texts. We started to generate what would be our emerging themes. Touching the data organized (and defined) the themes to illustrate the central concept,
How the IPA Method Generated Novel Findings
Physical manifestations and clinical metrics can be an ontological examination, but
[ “I do not feel held back by the slightest….I don’t think about it, like it’s a negative thing. It’s just a thing (line 771).”
But, throughout the interview, richer data begin to emerge. [ “Down the line I would surely appreciate a transplant becoming available. That’d be cool (line 658–659).”
He mentions how the pathophysiology of his heart condition affects him: “I would like to experience what it’s like to have a fully oxygenated bloodstream (line 659).”
Then, he states the true impact of how he feels: “Yea, the closest thing to a dream I have is just being able to get, to replace my heart (line 660)….I’d say that I live a 90% normal life (line 186)”
And the effect of the uncertainty: “
Yet, despite all these stated concerns, ‘Steve’ still consciously believes that, “My sense of identity gets formed through natural things. Little has to do with CHD (line 320,321).”
IPA elucidated this sort of rich dichotomous
I am reflecting on my interviews as a whole and something that stands out is the unpredictability and uncertainty of CHD as an adult. ….I think about, ‘Oh man, you just never know what that future looks like!’ I mean, when I was in my early 20s, I was stable and doing well. Started working full time as a nurse, got married, and bought a house. But what little did I know or truly realize what my future looked like. EVEY SINGLE participant illustrated how they attach meaning to their lives, including how disease represents itself within the context of their life plans.
All the participants were medically stable at the time of the interview. The data brought to the forefront personal accounts that often demonstrated a dichotomy between contentment and conflict, certainty and ambiguity, and a general sense of ambivalence. Common statements arose from the open-ended questions, which illustrate the convergence of meanings our participants attach to their everyday lived experience. This is the shared experience. The, ‘I know what it’s like and no one else understands except us.’ However, not all our participants experienced the same health path. This highlights the divergent and unique characteristics of the personal experience – the idiographic (
A fascinating finding included participants’ self-reports that their feelings (physical and/or emotional) were beginning to manifest more so now than when they were younger, despite being medically stable. Such concerns and important decisions emerged using hermeneutic methodology. The final experiential themes and associated subordinate themes were organized within the young adult developmental phase to explore how our participants viewed themselves. The heart defect is central to the individuals’ identity, which is how they view their position in the world - how they exist, see, and act (Aho & Aho, 2008).
Interpretative Phenomenological Analysis (IPA), as the theoretical underpinning, has not been found in prior works involving congenital heart disease. IPA shows to be worthy to explore a chronic health experience within the context of a life stage. Applying the IPA methodology to a study of young adults with chronic CHD enhances research found in prior studies that show conflicting evidence in the adult’s quality of life (QOL) and overall functionality. A struggle exists between a desire to normalize, which is in line with current evidence that many individuals with CHD of all ages wish to be viewed like their peers. However, what our study found is that while most of our participants demonstrated intentionality to avoid appearing different, they understand the severity of their heart defect, paired with the risks it creates when forming life decisions; particularly now that they are becoming adults and must make these decisions independent of their parent(s) and other relational influences. Further, there is an astute awareness that life could be taken away with little to no warning. This is not to say that our group of participants are fatalistic. Rather, they are conscientious about a potential reality that manifests through
Methodological Integrity and Ethical Considerations
Validity and reliability are found in the trustworthiness of the triangulated (interpretative) data to represent an accurate and authentic representation of the phenomenon. The dependability of the data was supported by the additional member checking [co-author] in the analytical phase. Furthermore, data integrity was upheld via PI self-reflexivity and accountability to the research team (and clinic setting) throughout the research process. Working closely with the clinic MD ensured access to a purposive, homogeneous sample, which improved transferability of the study results. The final analysis manifests from the double hermeneutic - involvement as primary investigator and each of the participants (Smith et al., 2009) to create a shared, collaborative analysis of what it means ‘to be,’ and to ‘be with’ CHD.
Conclusion
This paper discussed Interpretative Phenomenological Analysis (IPA) and its application to study chronic congenital heart disease during young adulthood. Guided by the three principles of IPA: (a) phenomenology, (b) hermeneutics, and (c) idiography, we found our study elucidated one’s
Using Interpretative Phenomenological Analysis (IPA) to inform this research produced valuable insight into the experiential that can be used to: (a) complement existing studies, (b) advance mixed methods research by combining clinical metrics with the experiential to gain a comprehensive understanding of chronic disease, and (c) promote interdisciplinary health-related research.
“To bypass the patient’s voice is to bypass the illness itself. And to bypass the illness is to overlook the
Footnotes
Acknowledgments
Declaration of Conflicting Interests
Funding
Ethical Statement
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