Perceptions of the medical relevance of patients` stories of painful and adverse life experiences: a focus group study among Norwegian General Practitioners

1.1. Theoretical perspectives

Our understanding of General Practice/family medicine as a discipline with its own theoretical framework is informed by the writings of Professor of Family Medicine Ian McWhinney. Beyond contributing to the patient-centred method of communication (Levenstein et al., Citation1986), McWhinney did substantial work as a medical philosopher, describing a comprehensive and holistic (the term biopsychosocial might also apply here) theoretical foundation for General Practice/Family Medicine as distinguishable from other medical disciplines (Martin et al., Citation2014; McWhinney, Citation1980, Citation1993; McWhinney & Freeman, Citation2009). A key characteristic of General Practice, he contended, is that it is shaped by the doctor-patient relationship and the doctor’s evolving knowledge of the patient as a particular person. Following patients over time, experienced GPs tend to develop what McWhinney called an organismic mindset (McWhinney, Citation1996, Citation2000). Organismic thinkers recognize the complex and context-dependent nature of human beings. Referring to Gorovitz and MacIntyre, McWhinney viewed each patient as a unique particular someone who, “occupies a region of space, persists through time, has boundaries and has an environment“. He also contended that, “the point about particulars is that their behaviour cannot be explained or predicted solely by applying to them the general laws of science” (McWhinney, Citation1989, p. 296). A person, like organisms in general, can grow, regenerate, heal, learn, self-organize and self-transcend. Regarding the health impact of adverse experiences, McWhinney wrote: “An organism reacts to the traumas of life as a whole. All significant illness affects the organism at every level, from the molecular to the cognitive and affective” (McWhinney, Citation2000, p. 137).

Since McWhinney’s time, Evidence Based Medicine (EBM) has dominated the medical discourse, with patient-centred communication remaining a useful communication tool. The call for more genuinely holistic, humane, person-centred medicine (or care) has, however, re-emerged in various milieus and ignited debate (Charon, Citation2006; Greenhalgh & Hurwitz, Citation1999; Kirkengen et al., Citation2012; Launer, Citation2002; Miles & Mezzich, Citation2011; Mjølstad, Citation2015).

2.1. Approach

To address our questions, we carried out a descriptive qualitative research study among Norwegian General Practitioners. We recognize that such studies do involve researchers’ interpretations (Braun & Clarke, Citation2021a). This study focuses on experience, in the sense that language reflects reality and is regarded as a tool for communicating thoughts, feelings, and experiences (Braun and Clarke, Citation2022). It is underpinned by a critical realist ontology in which reality is defined as something that exists “out there” while “access to it is always mediated by socio-cultural meanings” (Terry et al., Citation2017).

Our first reason for choosing focus group interviews to collect data is that they are considered particularly well-suited to studying attitudes and experiences (Kitzinger, Citation1995), and to exploring fields where little is known in advance (Morgan, Citation1998). Secondly, we wanted to accommodate the dynamics that focus groups could elicit, with space for a wide range of reflections, including tentative and conflicting views (Kitzinger, Citation1995). Our approach was inspired by the semi-structured lifeworld interview a phenomenological approach that aids in understanding “themes of the lived everyday world from the subjects’ own perspectives” (Brinkmann & Kvale, Citation2015, p. 27). We developed the interview guide with this in mind, i.e., seeking to explore how GPs understand and subsequently, either work or do not work with patients’ stories of painful and adverse experiences.

2.2. Sampling and recruitment

When selecting participants, we purposely recruited GPs who also supervise final year medical students attending in-service training at affiliated healthcare centres. Given the GPs’ clinical teaching and supervising interest and experience, we expected them to be familiar with discussing and reflecting on experiences from their daily work. At the same time, the invited GPs had not been encouraged earlier to think, or to teach, in any specific way regarding the topic in question. Apart from their University affiliation, we assumed that the participants would not differ much from other Norwegian GPs. GP tutors, some of whom had participated earlier in two voluntary courses organized by the university in 2016/17, were invited to participate in this event—focus group interviews. We were not acquainted with the GPs who volunteered to participate, with the exception of brief contacts with some few of them in other professional settings. MR had been one of the lecturers at the first course, but on a topic unrelated to our research topic.

2.3. Data collection

The interviews were moderated by MR, as well as by BPM, an established qualitative researcher with experience conducting focus groups. The focus groups lasted 70–90 minutes each. Each focus group consisted of GP tutors of varying ages, from both urban and rural areas. All groups involved both men and women, with a total of 11 men and 7 women participating. Fourteen of the participants were certified as Specialists in General Practice. The GPs represented a total of 303 years of clinical practice, and 147 years of tutoring students (see Table I).

In all three interviews, the moderators set the scene by recounting an authentic, anonymized patient narrative involving adverse childhood experiences, excerpted here:

Next, the moderators summarized an epidemiological study showing a dose-response association between self-perceived childhood difficulties and multimorbidity later in life (Tomasdottir et al., Citation2015). The group participants were then invited to respond, openly, and spontaneously, to that story and/or to share similar stories from their own practices.

Subsequently, the moderators applied a semi-structured interview guide comprised of flexible, open-ended questions (see supplementary material). All interview audio was recorded and transcribed, verbatim, by MR, who was also responsible for making field/reflection notes after each session.

During the interviews, the moderators paid particular attention both to complementary interactions, those exchanges in which participants supported and enhanced each other’s views and experiences, and to as argumentative interactions, exchanges in which participants questioned one another or openly expressed disagreement (Kitzinger, Citation1994).

2.4. Data analysis

We applied reflexive thematic analysis to our data (Braun & Clarke, Citation2019 and Citation2022; Terry et al., Citation2017). Generally, such thematic analyses seek to reveal patterns of meaning across the data (Braun and Clarke, 2020). Typically, codes and themes are developed inductively (Terry et al., Citation2017). Reflexive thematic analysis is well-suited to analysing data derived from research questions related to people’s experiences and perceptions, and it can be applied to heterogenous samples (Braun & Clarke, Citation2021b).

All four authors participated in the analysis of the data, following the six analytic steps described by Braun and Clarke (Braun & Clarke, Citation2006). First, we familiarized ourselves individually with the data while making observational notes. In the next step, we compared and discussed our observations and notes. Codes were then generated inductively, informed by the research questions. While most codes were descriptive (semantic) some were interpretative (latent). From the themes that we identified based on these codes, we formulated potentially overarching themes. We complied thematic maps to keep track of both codes and candidate themes. We completed the analysis by returning to the transcripts to check that the identified themes did represent the most relevant subjects discussed during the interviews. We applied McWhinney’s theoretical framework as a substantive theory to expand our findings and to sharpen our analytic focus (Malterud, Citation2016).

2.5. Ethical considerations

Before conducting the focus group interviews, we contacted the Regional Committee for Medical and Health Research Ethics (REK Midt) and described the study. No formal application was required by them, nor by the Norwegian Centre for Research Data (NSD), with whom we also consulted. Written consent to participate in the interviews/analyses was obtained from all focus group participants. The focus group audio recordings and transcripts have been secured in accordance with Norwegian research regulations.

3.1. The confident-accepting stance

As outlined above, some GPs in all three focus groups immediately took, and maintained, a confident-accepting stance in relation to working with patients’ stories of pain and adversity.

These confident-accepting GPs often validated the relevance of the vignette by recounting similar stories from their own practices, as one of them said in response to the opening vignette: “I know a lot of Annas.” (GP F)

In the discussions that followed, these GPs seemed to take the biography/biology interconnectedness as a given and rarely referred to scientific studies or theoretical frameworks to support their view. Their responses seemed primarily experience-based and case-oriented; they included types of adversity extending beyond the explicit, categorizable events or trauma typically discussed in the medical literature. For instance, they would agree that having a “longstanding lack of feeling safe and protected” would generally increase people’s susceptibility to disease. The confident-accepting GPs hardly distinguished between health problems that are classified conventionally into categories of somatic vs. psychiatric, or medically acknowledged vs. medically unexplained. For instance, GP Q associated a patient’s childhood history of being severely bullied and socially excluded with both muscular pain and lung disease in adult life:

To explain how they reasoned and worked, some of the confident-accepting GPs turned to everyday language metaphors. GP J referred to “good ballast” to explain how growing up in a safe and supportive environment tends to make people resilient. GP L referred to adverse life experiences as the patient’s “backpack” and that the GP might help the person “re-pack”. GP F stated that her most important role was to listen to patients’ stories, even repeatedly, so that they could “air themselves out”. Secondly, she should serve a supportive role for the patient, as a metaphorical “walking stick”. Unresolved ethical and practical issues restrain health professionals from entering stories of painful or adverse experiences into patients’ medical records, yet GPs often remembered them. One GP referred to this undocumented knowledge as “the shadow files”.

The consultation style of the confident-accepting GPs typically involved thinking through and applying a flexible strategy when it seemed that the patient’s painful story might have specific medical relevance. For example:

3.2. The ambivalent-conditional stance

This stance is characterized by an ambivalent response to the concept that life experiences and health are interconnected, and a conditional acceptance of patients` stories of painful and adverse experiences being relevant medically and falling within the GP’s mandate to explore.

Responding to the introductory vignette, some of these GPs seemed reluctant to acknowledge any general, biomedically relevant connection between a difficult childhood and adult disease, as one exclaimed: “Generally speaking, I’m sceptical about these studies or results.” (GP R)

These GPs had doubts as to how such childhood experiences could cause somatic diseases. GP E, for example, was sceptical about the existence of a link between stressful life events and what he referred to as “real” somatic diseases:

GP E’s statement exemplifies the tendency among those taking the ambivalent-conditional stance to draw a clear line between somatic and mental diseases/disorders. While they did not link somatic diseases to experienced adversity, they frequently associated mental problems and so-called “medically unexplained physical symptoms” (MUPS) with adverse life experiences. They often referred to symptoms that might have alerted them to a history of adversity as “diffuse”, “non-specific”, and/or “subjective”, effectively placing them in a diagnostic no-man’s land, some stressing how uniquely personal and unpredictable such linkages would be. Nonetheless, while concluding that the eliciting of such stories was of limited clinical value, they seemed eager to share examples of patients who were in good health—despite considerable adversity earlier in life.

A distinct feature of the ambivalent-conditional stance was that these GPs appeared willing to work with stories of adversity if and only if the patient explicitly asked them to do so, and if they considered the patient capable of exploring and carrying out necessary life changes. Such a conditional willingness to include patients’ stories in clinical work can be exemplified by the following exchange between two GPs taking the ambivalent-conditional stance (GP H and GP J), and one GP who held a confident-accepting stance (GP F). The three discussed allowing a patient to keep repeating what one GP perceived as, “Just the same story over and over again”. Was that a waste of time or might it be beneficial in some way?

The GP who generally took the confident-accepting stance responded:

3.3. Barriers to working with patients’ stories

3.4 Pathways to eliciting medically relevant stories

Despite the continuum of stances in relation to patients’ narratives of painful and adverse experiences, all participating GPs shared some ideas on factors that might facilitate GPs, and others, in working with them.

4.1. Main findings

Our study documents the reflections of 18 University-affiliated, GP supervisors in Norway, on what hinders or facilitates GPs’ work with patients’ stories of painful and adverse life experiences. The most striking finding was the diversity in how the GPs regard the medical relevance of working with their patients` stories of such experiences—ranging from a completely confident and proactive stance to a deeply ambivalent and conditional stance.

Another notable feature was the way the GPs spoke when discussing their reflections and experiences with patients` stories: the frequency of verbal hesitations was high, as were tentative and incomplete utterances, and the use of metaphors. We connect this to a lack of role models that leaves them unfamiliar with appropriate terminology, limiting their ability to describe their experiences, interpretations, and viewpoints regarding their work with patients’ stories and narratives in a concise, confident, and professional language. Ian McWhinney describes a similar phenomenon in his paper, “The Meaning of Holistic Medicine”. He gives an account of how physicians who try to work in a holistic manner and take patients’ life experiences and lifeworld into account, struggle to explain how they work: “He finds it much easier to practice the method than to articulate it, as there is no readily available taxonomic vocabulary, as there is with the conventional school” (McWhinney, Citation1980, p. 1096). His term, “conventional school” apparently refers to mainstream medical thought and practice, often termed “biomedicine”.

To our surprise, not one of the participating GPs mentioned that such stories evoked, or might evoke, memories of similar experiences in their own histories, or that this kind of triggering might represent an unnamed obstacle to working with patients’ painful stories. It would be valuable to delve into the meaning and consequences of this conspicuously absent content.

4.2. Theory of science: causality and dualism

The GPs’ two main stances in relation to stories of adversity might be seen as being rooted in two differing views of what to consider as trustworthy medical knowledge. GPs who took the confident-accepting stance to painful stories often referred to what they themselves had observed and learned from countless encounters with patients. In other words, their accumulated experience created a base of tacit knowledge (Polanyi & Sen, Citation2009) and practical, clinical wisdom (Malterud, Citation1995). GPs who took the ambivalent-conditional stance to patients’ stories based their reasoning more exclusively on formal medical knowledge. In response to the introductory vignette’s suggestion of how life experiences might impact health, their reluctance may be linked to the fact that documentation of the interconnectedness between life experiences and health is still treated as more or less separate from conventional, biomedical thinking (Karunamuni et al., Citation2021; Kirkengen et al., Citation2016).

GPs used tentative language during the focus group discussions, regardless of the stance they took. It seems appropriate here to posit that both the GPs’ differing stances in relation to stories of adversity and their tentative speech patterns are associated with indefinite and competing understandings of causality within medicine (Cartwright, Citation2011; Worrall, Citation2010). As outlined by philosophers in the CauseHealth Network, modern medicine is characterized by a marked tension between differing understandings of evidence and causality. Evidence-Based Medicine and Person-Centred Healthcare represent two different perspectives on reality, i.e., diverging ontologies (Anjum, Citation2016). EBM is founded on empiricism and abstractions, favouring observable, group-based data, predictability, and a regularity theory of causation. In contrast, Person-Centred Healthcare emphasizes complex and context-dependent, individual pathways, based on a theory of causal dispositionalism (Anjum, Citation2016; Anjum et al., Citation2020), in line with McWhinney’s organismic thinking (McWhinney, Citation1996, Citation2000). Both approaches are medically relevant but not directly compatible. In addition to encountering different perspectives on causation, most doctors have been trained in a healthcare system strongly influenced by psyche/soma dualism (Davidsen et al., Citation2016). Neither of the topics of causality or dualism was raised explicitly in our interviews, but we believe the GPs’ differing stances make sense when seen as expressions of implicitly differing perceptions of holism, dualism, and causality. The experienced GPs who took a confident-accepting stance to stories of adversity seem to have supplemented their biomedical health perspectives with organismic thinking, while the more sceptical GPs remained within a more conventional, biomedical perspective, in line with EBM. Nonetheless, the confident-accepting stance in relation to painful stories did not strike us as incompatible with EBM. The GP’s statement in response to the introductory vignette, “I know a lot of Annas”, is relevant, both from the perspective of regularity, i.e., that longstanding marginalization is, in general, a risk factor for health problems, and from the perspective of causal dispositionalism, i.e., emphasizing that the particular person’s story has unique features and potentials.

4.3. What to pick up on, and what to do with it

We noted that GPs identified various barriers to working with patients’ stories of painful and adverse experiences. One was their explicitly stated concern that probing into stories about adversity might have significant negative effects, either immediately if patients were to feel invaded, or in the long run if it were found that a medical focus on painful experiences did more harm than good. We found it interesting that when Ian McWhinney encountered similar concerns in 1980 (McWhinney, Citation1980), he interpreted them as expressions of two common and crucial misconceptions regarding “holistic” General Practice. The first was the idea that holistic GPs pry into patients’ private lives. McWhinney countered that a good GP gradually develops an understanding of the patient through careful observation and listening, thus avoiding premature or invasive inquiries. The second misconception that McWhinney disputed was that sensitivity to people’s life stories in a medical context might contribute to the “medicalization of life”. This contention, he warned, has the potential to hamper effective clinical practice; it is often clinically impossible to draw a meaningful distinction between problems of life and biomedical illness (McWhinney, Citation1980).

A recent Danish study of patients with multimorbidity who visited their GPs on a regular basis, sheds light on some of our findings (Joensson et al., Citation2020). The study documents what some of our participating GPs had sensed: that some patients do prefer to keep sensitive information from their GPs, based either on an explicit wish for privacy or on the fear of seeming inferior in some way. Moreover, also with direct relevance to our findings, patients tended to make judgements regarding what type of information might be welcome in a clinical encounter, i.e., worthy of a doctor’s attention. The authors of the Danish study conclude that patients’ fear of bringing up something medically irrelevant might result in the omitting of information that might have helped the practitioner arrive at a better understanding of patients’ health problems. Other studies support the premise that increased medical attention to the patient’s lifeworld in primary care does facilitate more humane and effective treatment and lead to better outcomes; those authors also assert that doctors can be sensitized to deliver such care (Barry et al., Citation2001; Gulbrandsen et al., Citation1997). However, clinicians may find it uncomfortable to explore patients’ painful and adverse experiences, particularly if they are uncertain whether such work ought to be part of a GP’s professional repertoire at all.

Implicit in overt expressions of scepticism—including statements such as, “it takes courage”—may be the fear of addressing the topic in so awkward and unproductive a manner that it would not help the patient. It may also imply an underlying inclination among some GPs to avoid all such encounters with unresolved stories of personal pain. The noteworthy absence of GPs’ self-referential associations to patients’ painful stories may further support that interpretation.

4.4. Reflexivity, strengths and limitations

The focus group interviews were jointly planned and conducted by two experienced GPs (MR and BPM), one of whom is an established, qualitative researcher (BPM). MR has worked as a GP in a rural area for 15 years and is also a GP tutor. LG practiced earlier as a GP and is now a Professor of Behavioural Sciences. LH has worked for decades as a GP in Denmark and is also an experienced qualitative researcher. As professionals, the authors share their recurring recognition that patients’ past and current medical problems and their stories of painful and adverse experiences are related. LG, BPM and LH have also conducted research into that subject.

As moderators of the focus groups (MR and BPM), we emphasized that the group members be allowed to speak as freely as possible. Questions were open-ended, and we maintained awareness of the importance of setting aside our own preconceptions. Our field notes, which we wrote immediately after each interview, included participants’ non-verbal responses. We also described responses we found especially interesting or surprising, such as those that showed apparent ambivalence or hesitancy. We paid particular attention to such aspects of our data when analysing the material.

The author groups’ insider perspective facilitated the rapid establishment of collegial contact with the participants and thus their ensuing discussions (Dwyer & Buckle, Citation2009). On the other hand, the situatedness and presuppositions shared by researchers and participants alike may have blinded us to perspectives that researchers with other backgrounds might have focused on and probed.

We do not know whether interviewing GPs who were not also University-affiliated tutors of medical students might have impacted our results. At the same time, other than the common denominator of being GP tutors, the focus groups were heterogenous, for example, regarding age, gender, years of experience.This would seem to indicate that our results might be transferable to other GPs. Also, our having elicited and identified an unexpected and notable diversity of viewpoints and working habits within what might well be presumed to be a resourceful subgroup of GPs, does suggest that our findings have high validity and relevance. The fact that several participants expressed uncertainty to the concept of medical relevance as early as our presentation of the opening vignette, suggests that they were not tailoring their reactions to try to please us, and that the subsequent analysis has not been unduly influenced by our own preconceptions.

We applied principles of information power (Malterud et al., Citation2019) to guide the sample size of our study. The relatively narrow aims of the study, the purposive sampling strategy, robust dialogues during the focus group interviews, and the diversity of participants’ perspectives, would suggest that the data information power is sufficient.

To ensure rigour and transparency, we consulted Braun and Clark’s twenty guiding questions to assess our thematic analysis research quality (Braun & Clarke, Citation2021a). We made sure that the criteria for questions 1,2,3,4,5,6,9,10,11,13,14 and 17 were met, and that potential pitfalls regarding questions 7,8,12,15,16,18,19 and 20 were avoided.