Abstract
Background: Patient experience is increasingly recognized as one of the three pillars of quality in health care, alongside clinical effectiveness and patient safety. However, little attention has been paid to the patients’ experience from the point of view of health care delivery.
Objective: To explore the initial experience of patients facing a new diagnosis of myocardial infarction (MI).
Methods: Thirty semi-structured, individual interviews were performed. The Grounded Theory method was used. Atlas.ti qualitative data analysis software facilitated the analysis.
Results: Three patterns of MI diagnosis experience were found: a close encounter with death, severe pain, and ‘silent’ MI. Newly-diagnosed MI patients who experienced a close encounter with death expected that, after necessary life-saving measures, their physician would not force immediate conversation, but leave them alone, simply to take pleasure in being alive. Newly-diagnosed MI patients who did not experience a close encounter with death expected that their physician would provide not only medical care but also immediate emotional support and opportunities to discuss in their own words their ideas, thoughts, concerns and fears. Six factors facilitated patients coping with a new diagnosis of MI: stay in hospital, completion of diagnostic tests, trust in physicians, the patient's previous expectation that he/she could have a heart attack, the patient's personality, and the need for solitude.
Conclusion: Physicians should be aware that different patterns of patient experience when facing MI could indicate patients’ differing needs for immediate emotional support and communication.
Facing a diagnosis of MI was a life-threatening and life-changing event.
Patients experiencing an encounter with death are expecting a purely biomedical approach.
Patients not facing a life-threatening situation expect immediate emotional support and the opportunity for their thoughts and concerns to be heard and discussed.
INTRODUCTION
Recently, a great deal of attention has been given to the definition, description, measurement and improvement of patient-centred care (PCC) (Citation1,Citation2). This has been motivated by research data indications that PCC is positively associated with various clinical and non- clinical outcomes (Citation3,Citation4). Patient experience, accordingly, is increasingly recognized, along with clinical effectiveness and patient safety, as one of the three pillars of quality in health care (Citation4).
The experience of patients dealing with myocardial infarction (MI) is simultaneously congruent, and yet unique (Citation5). It is mostly nonlinear, consisting of intertwining phases, which bring the patient gradually to the moment of acceptance or non-acceptance of illness (Citation6). Among health professionals, nurses have been those primarily interested in the patient experience because of their caring role (Citation7). The growing interest in this subject among physicians may, in part, be attributed to the provision of PCC (Citation8). Hitherto, the patient's illness experience has been interpreted under psychosocial, behavioural, sociological and anthropological concepts (Citation9,Citation10). Less attention has been paid to the health care delivery aspect (Citation11).
In an attempt to address this gap and ambiguity, patients’ experiences of facing and living with MI for their health care needs and expectations were studied.
This paper reports on findings from the analysis of patients’ very first experiences when confronting the new diagnosis of MI. It focuses on what the new diagnosis means for the patient in terms of their thoughts and feelings as well as their expectations from health professionals. This knowledge and understanding could be especially helpful for general practitioners (GPs) in the provision of patient-centred post-hospital care.
METHODS
Study design
This qualitative study was conducted as part of the scientific project ‘Life with chronic disease: the patient's experience,’ supported by the Croatian Ministry of Science, Education and Sports, registration number: 108–1080317–0280. The Ethical Board of the Zagreb University School of Medicine approved the Study (number 04–1162–2006).
To collect data, semi-structured, individual interviews were performed and transcribed verbatim. For the data analysis and interpretation, a grounded theory method was used, since it represents interpretative analysis of the data with attempts to describe, explain, and understand the lived experiences of a group of people (Citation12,Citation13). The characteristics of grounded theory include simultaneous involvement in data collection and analysis, as well as theoretical sampling. In addition, the investigator triangulation method, checking qualitative research validity, was used in the analysis process (Citation14).
Selection of study subjects
Selection of practices. The study was conducted in general practice settings and GPs were asked to recruit the patients. To maximize variation in the recruited patients, 16 GPs, 10 from urban and six from suburban areas, were recruited from the list of 424 physicians who worked in family medicine, in the city of Zagreb, Croatia, using maximum variation sampling strategy. This attempted to ensure that the variation in recruited patients in the area was, to some extent, reflected in the sample.
Selection of patients. A total of 32 patients with a primary diagnosis of MI were recruited from a group of 16 GPs using a theoretical sampling strategy (Citation13). In the first phase, 16 patients with MI were recruited as follows: eight GPs chose one male and eight GPs one female, according to predefined inclusion criteria: that all patients should have been followed up as ambulatory patients, patients should be aged 45–65, the time since MI should be within the range of two-to-five years, and that patients should be good informants (Citation15). This strategy helped to recruit patients with a range of social characteristics (gender, educational level, socio-economic status, etc.), which may affect individual experience of MI. In the second phase, another 16 patients were recruited according to the results of iterative data analyses to explore analytically relevant distinctions (Citation12,Citation13).
The first patient fulfilling the inclusion criteria who entered the GP's office in the study period was informed by his/her GP about the purpose of the study and study design, and was invited to participate. Only one patient refused. Those willing to participate were provided with an official letter of request and signed a written consent form.
Data collection
The semi-structured, individual interviews were performed using an interview guide that consisted of five open-ended questions focused on the person's entire experience; from the initial symptoms, through facing the diagnosis, to coping and living with MI. Supplementary questions were used where further elaboration was needed. The questions were developed from the literature base, discussed within the group of participants at workshops on the use of qualitative research methods, and piloted by interviewing five patients prior to the study (Citation16).
The first author carried out all interviews. Patients were given the choice of place of interview. Seventeen took place in the GPs’ surgeries, and 15 in the participants’ homes. There was no indication that the place of interview had any significant effect on patients’ responses. The tape-recorded interviews lasted from 30 to 45 min and were transcribed verbatim. From the 32 transcripts, 30 were used for the analysis, and two that failed to meet Kvale's quality assurance criteria were removed from the process (Citation17).
This paper presents the patients’ stories, feelings, explanations and reflections on the question: ‘How did you experience the diagnosis of MI?’ In some cases, the following supplementary questions were used: ‘Did you have any worries or fears about your situation at that very moment? What kind were they? What did you think about? How did you feel at that time? What kind of support did you get? Did you need different support from what you got?’
Data analysis
The first step was open coding, identifying concepts as well as their dimensions and properties. The theoretical framework was further developed with axial coding (by relating categories to their subcategories at the level of properties and dimensions) and finally, integrated and refined with selective coding (Citation12). At about the eighteenth interview, it was felt that the emerging theoretical framework was sufficiently developed: data saturation had been reached (Citation13). Information obtained from subsequent interviews provided no additional relevant insight.
The process of investigator triangulation was as follows: The analysis was initially done by the principal investigator, the first author, by using the Atlas.ti analytic tool (Citation18). In parallel, a group of three investigators individually analysed all 30 interviews manually. Then, these three met to discuss the results and reach a consensus. Finally, the principal investigator made a comparison between her results and those of the group. In unclear cases, or in the case of disagreement, the four investigators met and discussed the results. The final results represent consensus among all four investigators (Citation14).
RESULTS
Patient characteristics
Out of 30 patients, 16 were male (16/30) and 14 were female (14/30). The average age was 53.6 ± 6.4 (M ± SD). The average length of time since diagnosis was 3.7 ± 1.3 years. In addition to MI, most patients reported two (19/30) or one (5/30) co-morbidities, most frequently hypertriglyceridemia (30/30), hypertension (24/30), and diabetes mellitus type 2 (18/30). Data on patients’ socio-demographical characteristics are summarized in .
Table 1. Socio-demographical characteristics of patients in the study.
Patients’ very first experiences when confronting the new diagnosis of MI
Data indicates that patients facing a diagnosis of MI perceived it as a life-threatening condition where ‘nothing will be like before,’ as patient M10 declared. Furthermore, two major themes and explanatory models of MI patients’ experience emerged from the data: 1. ‘Facing uncertainty’ and 2. ‘Coping with the new diagnosis of MI.’ The first theme was based on patients’ descriptions about arriving at their diagnosis, and the second theme on descriptions about factors for successfully coping with the MI diagnosis.
‘Facing uncertainty’
The analysis resulted in three main patterns in which patients described their very first experience on encountering the event. The patterns that emerged from the data are: ‘Thank God I have survived!,’ ‘Pain in the foreground,’ and ‘Can I really have had an MI?’ The age, sex and socio-economic distribution of patients were broadly similar in those three groups. The patient's specific physical, cognitive and emotional experience components are described in each of these routes to arriving at a diagnosis.
(a) ‘Thank God I have survived!’ (Box 1a). The first group of patients described the onset of symptoms as being a tumultuous eruption, a sense that their life was in danger and, for most, even the sense of a close encounter with death. Their cognitive and emotional capacities were drained. A sense of relief and happiness, because they were still alive was enough for them. Furthermore, these patients expressed a profound confidence in the doctors’ ability to get them through the high-risk treatment.
(b) ‘Pain in the foreground’ (Box 1b). The experience of the second group of patients represents the experience of most of patients in this study. This group of patients experienced severe chest pain, which was in the foreground. Their cognitive reactions were numerous; they were wondering what was going on, why, and what the possible consequences could be for them and their families. Their emotional reactions were grounded in surprise and ‘shock,’ they were afraid, concerned for their own lives and the future, their own as well as their families.’ Their need for emotional support and rational explanations was clearly expressed.
(c) ‘Can I really have had an MI?’(Box 1c). The third group of patients reported absence of symptoms, or the presence of low intensity symptoms that they did not associate with MI. Their diagnosis was made based on diagnostic procedures (ECG, ergometric). Experience of an unexpected diagnosis was accompanied by the patients thinking about why and how the disease emerged, their role in the onset of disease, the prognosis and further treatment, and the possibility of disruption to their life plans. Their emotional reactions varied from surprise to ‘shock,’ then fear of possible death, and concern for the future, from both emotional and existential aspects. They too made clear their need for emotional support and rational explanations.
‘Coping with the new diagnosis of MI’
Patients have highlighted six factors that facilitated their coping with the new diagnosis of MI (Box 2).
(a) Stay in hospital. The hospital environment and being cut off from family and home, contributed to a patient's faster realization that MI was a serious illness after which everything would be different.
(b) Completion of diagnostic tests. Putting an end to uncertainty was an important experiential factor in coping with the diagnosis, because it is always ‘easier when you know who/what you are fighting against.’
(c) Trust in physicians. Patients emphasized the importance of trust in the doctor who communicated the diagnosis to them.
(d) The patient's previous expectation that he/she could have a heart attack. ‘I knew what was in store for me! The patient's expectation that he/she could suffer a heart attack usually stemmed from family experience of MI. Those patients were more familiar with the diagnosis of MI and expressed that they were not that surprised.
(e) The patient's personality. The patient's personality, especially in respect of optimism and hope, was another important enabling factor in successful cognition and facing up to the disease.
(f) The need for solitude. The need to be alone while mentally processing the MI diagnosis was commonly expressed in the analysis of patient experience. Regardless of the route by which they arrived at a diagnosis, patients mainly underwent the process of MI cognition by themselves.
Discussion
Main findings
In this study, patients facing a new diagnosis of MI perceived it as a life-threatening condition and an event, which changed their life perspectives. Two different patterns of thoughts, feelings and expectations, important for the provision of PCC, can be recognized. Patients who experience an encounter with death are cognitively ‘empty’ and expect a purely biomedical approach, limited to life-saving measures, and to be left alone to enjoy being alive. By contrast, patients not facing a life-threatening situation expect not only medical care, but immediate emotional support and the opportunity for their ideas, thoughts, concerns and fears to be heard, explored, and discussed.
In addition, six factors emerged to facilitate coping with a new diagnosis of MI: stay in hospital, completion of diagnostic tests, trust in physicians, the patient's prior expectation that he/she could have a heart attack, the patient's personality (optimism and hopeful disposition), and the need for solitude.
Strengths and limitations
Although the findings are consistent with those of other studies describing patients’ experiences facing MI as a serious and life-changing condition, this study adds to previous knowledge by showing that three separate patterns of patient experience require two different PCC approaches (Citation8,Citation19,Citation20).
The strength of this study is its theoretical framework, centred on examining illness experience both in social context and the patients’ own words. The framework was useful in helping to understand the complex process of PCC provision. The main findings of this study suggest a possible explanation of the needs and expectations of the patients surviving and coming to terms with a diagnosis of MI. This explanation could bridge the gap between the perceptions of patients and health professionals. ‘Ensuring that the individual patient's information needs are met is a key feature for cardiac rehabilitation development,’ are the conclusions of White et al. (Citation21). The grounded theory and triangulation methods were relevant and useful for the purpose of the study.
The study has several limitations. However, given that data was collected until saturation was reached, and no new themes emerged, this study may highlight issues that are relevant to many patients who have had an acute MI. At the same time, the experience of patients from this study may not be generally transferable to all people. Although the participants came from a broad range of socio-economic backgrounds, we cannot assume that other themes would not arise in other localities and cultural groups. Furthermore, the sample was dependent on GPs, which made it more difficult to recruit patients with wider characteristics, such as those not regularly coming to the GP, or those under the care of a cardiologist. Another limitation lies in the fact that the study was carried out several years after the occurrence of MI (two-to-five years). Although, the general assumption is that most people will internalize the presence of disease within two years of the diagnosis, it is not known whether is better to examine short- or long-term memory of life experience, including the context (Citation22).
Interpretation in relation to existing literature
Other studies have also shown that patients in life-threatening situations feel totally dependent on doctors (Citation19,Citation23). Once again, trust to doctors appeared as a fundamental existential issue for patients facing life-threatening conditions (Citation19). Although other authors found that patients suffered serious psychological distress, including post-traumatic stress disorder, when confronted by life-threatening conditions, these were not noticed in patients from this study (Citation24,Citation25). They concentrated instead, as Schaufel et al. found, on positive aspects of their lives, on their abilities and meaningful relationships, and expressed the experience of hope (Citation19,Citation20). Furthermore, factors that helped patients to come to terms with the MI were similar to those mentioned in other studies. There was an emphasis on the role of the hospital, as it offered a sense of security (Citation26). Completion of diagnostic tests also assisted, perhaps because subjective difficulties have then materialized into an objective finding, suggesting that patients need something tangible. Trust and confidence in physicians, previous experience and previous expectations that ‘I could have an MI’ were also enabling conditions in acceptance of the diagnosis. The most common and most effective coping strategies adopted during this period were confrontation, optimism and self-reliance (Citation21). Perhaps this was the reason why the patients had a need for solitude; to get a deep insight about what had happened to them and to find ‘peace’ between him/her and the event.
Implications for clinical practice, education, policy or research
Findings of this study correlate highly with Weston's description of the patient-centred method: ‘It is a process of acquiring qualitative knowledge and understanding of a fellow human being; to capture patients’ needs, motives and expectations as part of their health or illness experiences’ (Citation27). Therefore, the findings might be useful to inform practitioners about specific strategies to apply within the PCC approach; the patient's entire experience should be heard, understand and discussed. The experience of patients from this study indicates that the hospital setting was important for feeling safe. The discharge period could be risky so ‘where available, follow-up service was highly valued’ (Citation28). The provision of safe, patient-oriented post- hospital care should be an important aim for GPs and their teams.
Effective medical practice requires narrative competences: that is, the ability to acknowledge, absorb, interpret and act on the stories and plights of others. The patients’ stories can be used in the education of medical students and trainees as models for empathy, reflection, professionalism and trust (Citation29). We believe that the ability to acknowledge the patient's story is important not only in graduate or postgraduate education, but also in continuing professional development. Reflection on patients’ stories in supervised peer group sessions has influence on attitudes and values. Making health care professionals more aware of how these are expressed in caring actions may prompt them to take greater account of the patient's point of view (Citation30).
Since each patient's experience is unique and deeply embedded in the cultural context of his or her life, future research on this topic in different population groups and in different settings is necessary.
Conclusion
This study adds to previous knowledge by showing that three separate patterns of patient experience require two different PCC approaches: newly diagnosed MI patients who experience an encounter with death are expecting a purely biomedical approach, limited to life-saving measures, followed by the opportunity to be left alone to enjoy being alive. By contrast, patients not facing a life-threatening situation expect, in addition to medical care, immediate emotional support and the opportunity for their ideas, thoughts, concerns and fears to be heard, explored, and discussed.
ACKNOWLEDGEMENTS
The authors should like to thank the patients who were ready to share their personal experiences and the GPs who assisted with recruitment, without either of whom this study could not have been carried out.
Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
REFERENCES
- Davies E, Shaller D, Edgman-Levitan S, Safran DG, Oftedahl G, Sakowski J, et al. Evaluating the use of a modified CAHPS survey to support improvements in patient-centred care: Lessons from a quality improvement collaborative. Health Expect. 2008;11: 160–76.
- Keenan PS, Elliott MN, Cleary PD, Zaslavsky AM, Landon BE. Quality assessments by sick and healthy beneficiaries in traditional Medicare and Medicare managed care. Med Care 2009; 47:882–8.
- Stewart M, Brown JB, Donner A, McWhinney IR, Oates J, Weston WW, et al. The impact of patient-centred care on outcomes. J Fam Pract. 2000;49:796–804.
- Doyle C, Lennox L, Bell D. A systematic review of evidence on the links between patient experience and clinical safety and effectiveness. Br Med J. Open 2013;3.
- Petrie KJ, Weinman J, Sharpe N, Buckley J. Role of patients’ view of their illness in predicting return to work and functioning after myocardial infarction: Longitudinal study. Br Med J. 1996; 312:1191–4.
- Delmar C, Bøje T, Dylmer D, Forup L, Jakobsen C, Møller M, et al. Achieving harmony with oneself: Life with a chronic illness. Scand J Caring Sci. 2005;19:204–12.
- Doiron-Maillet N, Meagher-Stewart D. The uncertain journey: Women's experiences following a myocardial infarction. Can J Cardiovasc Nurs. 2003;13:14–23.
- Fremont AM, Cleary PD, Hargraves JL, Rowe RM, Jacobson NB, Ayanian JZ. Patient-centered processes of care and long-term outcomes of myocardial infarction. J Gen Intern Med. 2001; 16:800–8.
- Leventhal H, Leventhal EA, Contrada R J. Self-regulation, health, and behavior: A perceptual-cognitive approach. Psychol Health 1998;13:717–33.
- Stevens S, Thomas SP. Recovery of midlife woman from myocardial infarction. Health Care Woman Int. 2012;33:1096–113.
- Ononeze V, Murphy AW, MacFarlane A, Byrne M, Bradley C. Expanding the value of qualitative theories of illness experience in clinical practice: A grounded theory of secondary heart disease prevention. Health Educ Res. 2009;24:357–68.
- Hesse-Biber SN, Leavy P. Approaches to qualitative research. A reader on theory and practice. New York: Oxford University Press; 2004.
- Strauss A, Corbin J. Basics of qualitative research: Techniques and procedures for developing grounded theory. 2nd ed. London: Sage publications; 1998.
- Patton MQ. Qualitative research and evaluation methods. 3rd ed. London: Sage publications; 2002.
- Fraenkel JR, Wallen NE. How to design and evaluate research in education. 2nd ed. New York: McGraw-Hill Higher Education; 2006.
- Vrcic-Keglevic M, Petricek G, Buljan J, Prljevic G, Murgic L. Life with a chronic illness—patients’ experience. In: Book of abstracts. European General Practice Research Network. Research on Multimorbidity in General Practice, 15–18 October 2009, Dubrovnik, Croatia. Dubrovnik: European General Practice Research Network; 2009. p. 34.
- Kvale S. Interviews: An introduction to qualitative research interviewing. London: Sage; 1996.
- ATLAS.ti Educational single user license/license key: 761E8-D37EA-0E56M-MQWM1-014OO.
- Schaufel MA, Nordrehaug JE, Malterud K. ‘So you think I'll survive?’: A qualitative study about doctor–patient dialogues preceding high-risk cardiac surgery or intervention. Heart 2009; 95:1245–9.
- Sutherland B, Jensen L. Living with change: Elderly women's perceptions of having a myocardial infarction. Qual Health Res. 2000;10:661–76.
- White S, Bissell P, Anderson C. Patients’ perspectives on cardiac rehabilitation, lifestyle change and taking medicines: Implications for service development. J Health Serv Res Policy 2010;15: 47–53.
- Gillibrand W, Flynn M. Forced externalization of control in people with diabetes: A qualitative exploratory study. J Adv Nurs. 2001;34:501–10.
- Chapman E, Parameshwar J, Jenkins D, Large S, Tsui S. Psychosocial issues for patients with ventricular assist devices: A qualitative pilot study. Am J Crit Care 2007;16:72–81.
- Edmondson D, Rieckmann N, Shaffer JA, Schwartz JE, Burg MM, Davidson KW, et al. Posttraumatic stress due to an acute coronary syndrome increases risk of 42-month major adverse cardiac events and all-cause mortality. J Psychiatr Res. 2011;45:1621–6.
- Shemesh E, Koren-Michowitz M, Yehuda R, Milo-Cotter O, Murdock E, Vered Z, et al. Symptoms of posttraumatic stress disorder in patients who have had a myocardial infarction. Psychosomatics 2006;47:231–9.
- Daly J, Elliott D, Cameron-Traub E, Salamonson Y, Davidson P, Jackson D, et al. Health status, perceptions of coping, and social support immediately after discharge of survivors of acute myocardial infarction. Am J Crit Care 2000;9:62–9.
- Weston WW, Brown JB, Stewart MA. Patient-centred interviewing part I: Understanding patients’ experiences. Can Fam Physician 1989;35:147–51.
- Bench SD, Day T, Griffiths P. Involving users in the development of effective critical care discharge information: A focus group study. Am J Crit Care 2011;20:443–52.
- Charon R. At the membranes of care: Stories in narrative medicine. Acad Med. 2012;87:342–7.
- Berglund M, Westin L, Svanström R, Sundler AJ. Suffering caused by care—patients’ experiences from hospital settings. Int J Qual Stud Health Well-being 2012;7:1–9.