THE INFLUENCE OF NARRATIVE MEDICINE TECHNIQUES ON THE ROLES OF
POTENTIAL PATIENT AND FUTURE CAREGIVER – A PILOT STUDY

A
INFLUÊNCIA DAS TÉCNICAS DE MEDICINA NARRATIVA NOS PAPÉIS DE POTENCIAL PACIENTE
E DE FUTURO CUIDADOR - UM ESTUDO PILOTO

ABSTRACT

The
emergent field of the Medical Humanities defends the introduction of training
in the humanities in healthcare contexts. Considering Narrative Medicine as one
of the areas of the Medical Humanities, a pilot study was conducted with a
group of 9 students (Medical and Humanities) to gain some insight as to if/how
training in Narrative Medicine techniques (namely, close reading of and creative/reflective
writing on literary narratives on the thematics of health) could promote
changes in participants’ perceptions of their potential roles as patients or
caregivers. Alterations were assessed using semi-structured, focus-group
interviews carried out after training. Qualitative thematic analysis was used
to examine interview responses. The interviews demonstrated that participants
perceived that the training had enhanced their capacity to fulfill their
patient and caregiver roles. Potential patients expressed a desire to interact
more fully and efficiently in healthcare relationships and future healthcare
professionals expressed a desire to attend their patients more comprehensively.
Moreover, participants’ responses spoke to the potential benefits of using
Narrative Medicine literary analysis techniques with mixed groups. The findings
of this study are presented within the context of contemporary theories on the
Medical Humanities and Health Humanities.

Keywords: Narrative Medicine. Medical
Humanities. Close reading. Reflective writing.

RESUMO

O campo emergente das Humanidades Médicas defende
a introdução de formação nas humanidades nos contextos da saúde.
Considerando-se a Medicina Narrativa uma das áreas das Humanidades Médicas, foi
realizado um estudo piloto com um grupo de 9 estudantes de Medicina e
Humanidades, de modo a explorar como o treino em técnicas de Medicina Narrativa
(i.e., a leitura cerrada e a escrita reflexiva de narrativas
literárias na  temática da saúde) pode
promover mudanças nos seus potenciais papéis de paciente ou cuidador. Após o
treino foram realizadas entrevistas de grupo de foco para explorar a percepção
dos participantes sobre as mudanças decorrentes daquele treino nos seus
potenciais papéis de paciente ou cuidador. As respostas às entrevistas foram
sujeitas a uma análise de conteúdo temática, tendo revelado que os
participantes percepcionaram que o treino potenciou as suas capacidades de
desempenho dos seus papeis de paciente e cuidador. As respostas suportam os
benefícios potenciais das técnicas de análise literária da Medicina Narrativa
com grupos compostos por profissionais de saúde e pacientes, sugerindo que isso
pode ajudar os profissionais de saúde a atender melhor aos seus pacientes, mas
também que pode permitir que os próprios pacientes participem de maneira mais
completa e eficiente na relação de cuidado. Os resultados são interpretados no
contexto das teorias contemporâneas das Humanidades Médicas e das Humanidades
da Saúde.

Keywords: Medicina
Narrativa. Humanidades Médicas. Leitura cerrada.
Escrita reflexiva.

INTRODUCTION

Incorporating practises that can
assist healthcare professionals in providing the best care possible in
contemporary and future medical scenarios is at the centre of current debates
on health care education and training. In this article we will look at the
arguments presented by the Medical Humanities in general and Narrative Medicine
in particular within this context. Therefore,
before discussing the pilot study we will begin this article with a brief
overview of  the history and development
of the Medical Humanities from the 20th century to the present. We
will then offer an  introduction to
Narrative Medicine and its techniques as two such techniques – close reading of and creative/reflective writing on literary
narratives – were used in the pilot study[1] carried out
with Medical and Humanities students[2]. This study
asked the research question: if/how close reading of and creative/ reflective writing on literary
narratives on the thematics of health can promote changes
in the roles of the participants in the caregiving relationship. The technical parameters of the study – its specific
objective and importance – will then be laid out. The basic methodology is
presented in a Method section which describes the participants, the
intervention, assessment and data anlysis procedures. The Results and Analysis
section describes and interprets the results and the Final Considerations
section will sumarise the findings, indicating the limitations as well as
future possible research.

THEORETICAL FRAMEWORK: MEDICAL HUMANITIES
& NARRATIVE MEDICINE

Historian of
science, George Sarton, introduced the term Medical Humanities in 1948 to
permit the conjoining of medicine and the humanities under a unifying umbrella
term at a time when approaches to medical education and training –  including the discussion of the potential
role of the humanities and multidisciplinary approaches in this field – were
being debated (HURWITZ, 2015, p.14). Two decades later, in 1973, the Medical
Branch of the University of Texas at Galveston founded the first Institute
devoted to Medical Humanities (HURWITZ, 2015, p22).  Since then the field of Medical Humanities
has played an important role in making the humanities central to many medical
programs in the USA and Europe (AHLZEN 2007). For instance the Association of
Medical Humanities (AMH) founded in the UK in 2000 currently lists 17 Medical
Humanities programs in British and Irish universities as well as five full
degrees – 1 BA, 3MAs and 1 BSc (ASSOCIATION OF MEDICAL HUMANITIES).

However, the connection between
literature and medicine far precedes the establishment of the Medical
Humanities as a field. In fact, it seems that physicians have always been drawn
to poetic expression as is attested by Mary Lou McDonough’s compilation of the
poetry of one hundred doctors: Poet
Physicians, An Anthology of Medical Poetry Written by Physicians (1945).
Perhaps what is more revealing is not the volume itself, but rather its
reception by the medical community as illustrated  by Thomas Keys’ review in the Bulletin of the Medical Library Association
(1945). Keys began the review indicating that it is
the very nature and demands of the medical professional that leads physicians
to write poetry.  He also refers
to the role that literary writing had played historically in
transmitting knowledge from one generation of medical practitioners to the
next:

It is
not surprising that many physicians have contributed to the poetic literature.
Whether it is an expression of their insight into the workings of the human
mind brought about by their appreciation of personal contacts or due to a
disciplined ability in general is hard to determine.

[…] In
the beginning, certainly, and long before the era of the printing press, poetry
was of great practical importance. For, being transmitted orally from
generation to generation, it was a way of preserving our cultural heritage. (KEYS,
1945, p.226)

Moreover, since
the birth of modern medical training programs at the end of the 19th
century leading medical educators including William Osler have considered the
study of literary classics and medical biographies fundamental to the complete
education of doctors, proposing that this study could help young physicians to
bridge the gap between theoretical learning and practical application (OSLER,
1908).

Osler’s thinking
is echoed in contemporary generalistic studies that have been carried out to
look at the potential role that the humanities may play in health care
education. For instance, Kaptein and Lyons suggest “Novels and other creative
endeavours offer potentially rich sources of knowledge, empowerment and
enlightenment, and their use in health psychology could be invaluable” (KAPTEIN
and LYONS, 2009, p.169). They further propose that exposure to cultural
productions, from theatrical performances to literary texts, can provide health
professionals with the competences required for practicing in today’s global
world because these can offer much-needed contact with cultural realities
outside of the mainstream. Moreover, Watson’s recent empirical study
demonstrated that when students from the health sciences read for leisure their
empathy, understanding, thinking and communication skills were further
developed (WATSON, 2015). Building on prior research, including Kidd and
Castano (2013), and Black and Barnes (2015), Pino and Mazza’s extensive study
demonstrated that attentive reading of fictional novels can indeed enhance
empathy levels among psychology students (PINO and MAZZA, 2016). Furthermore, Ghias
and collaborators observed that medical students perceived that the
introduction of Humanities and Social Sciences seminars in their medical
training programs had helped to broaden their comprehension of the
carer-patient relationship (GHIAS and collaborators, 2016).

In recent years
Paul Crawford and his team have appealed to the inclusion of training in the
humanities not only for all the healthcare professionals involved in caring,
but to also extend this practise to informal carers and service users – namely
the patients themselves (CRAWFORD, 2010). They suggest the broader term Health
Humanities as the future of Medical Humanities, proposing that “despite
considerable achievements in the medical humanities a more inclusive and
applied approach to healthcare is vital” (CRAWFORD et al, 2010, p.8). We
consider that Narrative Medicine has great potential as an inclusive
application as it places the
narrative of the patient and the caregivers’ interpretation of this at the
centre of the healthcare relationship. It suggests “if sickness unfolds in
stories, both when the patient tells of symptoms and the doctor hears and
retells them, then narrative practice might occupy a central role in the lived
experience of being ill and caring for the sick” (CHARON, 2015: 95). Thus, it
can be seen to support Crawford et al’s
suggestions.

Specifically
looking at the proposals of Narrative Medicine, we can see that it suggests
that interaction with health narratives through close reading and creative/reflective
writing composed “in the shadow” of the text read, enhances carers’
attention and representations skills, thus their capacity to comprehend
patients’ stories of illness and represent these externally. It also proposes
that close reading of participants’ own texts can contribute to the capacity to
create successful affiliations with all the intervenients in healthcare
relationships (CHARON, 2001, 2006, 2015).

When it comes to
extracting information from written texts, close
reading has been used for millennia across myriad disciplines, from
comprehension exercises in education to theological research, as a
meaning-making instrument (SISSON and SISSON, 2014). Therefore, practise of close reading in medical training could
hone the skills required to extract meaning from narratives transmitted in a
medical consultation. Rita Charon, the founder of the Narrative Medicine
methodology, goes even further proposing that “attentive listening to oral
language is akin to close reading of
a written text, and training in close reading
is seen to ‘translate’ into improved attention in listening to oral language”
(CHARON, 2015: 99). But Narrative Medicine’s proposals go beyond enhanced
meaning-making skills, suggesting that training healthcare personnel in skills
such as close reading and reflective writing not only enhances the
quality of care given, but also the caregiver’s sense of fulfilment in the
patient-carer relationship (CHARON, 2001). The perspective of Narrative
Medicine aligns with that of Narrative Psychology (e.g., BRUNER, 2004), which
suggests that  narratives produced by
cultural objects (including literary and art narratives) function as models
that influence how individuals organize and create their experience. This of
course could be seen to include the health patient and carer experience.

Moreover, studies
carried out recently in healthcare settings to evaluate the effects of directed
reading and writing activities – similar to close
reading and creative/reflective
writing – have shown very positive outcomes, validating Charon’s proposals.
For instance, when physicians were trained in guided reflective writing, contemplation capacities were promoted and
empathy enhanced (MISRA-HEBERT et al. 2012).
Furthermore, controlled experiments have demonstrated that encouraging patients
to write reflectively about stressful experiences had a significant positive
effect on the severity of symptoms experienced by patients suffering from
asthma and rheumatoid arthritis (SMYTH et al., 1999).  Writing about prior trauma also boosted immune
response to Hepatitis B vaccination among medical students when they were
immunized (PETRIE et al., 1995).
These studies speak to the benefits of using directed reading and writing
activities in healthcare contexts.

THE
PILOT STUDY

This pilot study
aimed to explore the participants’ considerations of how the intervention –
reading fictional, literary texts on the thematic of healthcare and writing
about these – had impacted on their perception of their roles of patient and
carer. The importance of this study is that it contributes to an empirical
grounding for the possibilities claimed for this kind of intervention.
Moreover, it permits the collection of information from future carers and
potential patients’ on their individual perceptions of possible changes brought
about by this kind of intervention.

This pilot study
was developed in the aftermath of a broader study carried out with Humanities
students (HS) and Medicine students (MS). This experimentally evaluated the
effects that the intervention (training in close
reading and reflective writing of
literary narratives on the thematics of health) had on the quality of analysis
produced by students (DUARTE et al., 2020).

METHOD

An intervention
inspired by Narrative Medicine practices
was applied with a mixed group of HS and MS. The group was composed of 9
university students: 2 males and 7 females, mostly in the 3rd year
of their studies (M=3; SD=.44) with a statistical mean age of
22.5 years (SD=3.68). 7 participants were HS and 2 were MS. Informed consent
was obtained and confidentiality was assured. The study was approved by an
Academic Institution’s Deontological Commission.

The group
participated in three sessions of around fifty-five minutes over a period of three
weeks. They learned and used close
reading of and creative/reflective
writing applied to excerpts of literary narratives on health. The excerpts
dealt with different aspects of illness and of the relationship between carer
and patient. The excerpt  from The Whereabouts of Eneas McNulty by
Sebastian Barry (1998) illustrated the observation of sudden illness from the
outside; the section from Heart and Soul
by Maeve Binchy (2008) demonstrated the experience of illness; and the text
from The English Patient by Michael
Ondaatje (1992) focused on the role of the carer.

In each session,
following Narrative Medicine procedure (CHARON et al, 2016), participants were
given a brief introduction to the text to be read. This was then read aloud,
slowly and expressively, as participants read it silently and freely marked
(i.e., underlined and/or noted) the aspects they considered as relevant to
them.  Subsequently, each participant was
invited to speak about the sections they had highlighted and these were discussed
by the group, with a view to permitting participants comprehend selections and
consolidate personal connections with the text. As this process developed, the
facilitator called participants’ attention to the literary techniques and
language used in the text (e.g., metaphor; irony, etc.), because these were
often present in the sections selected for discussion. The facilitator’s
purpose here was not primarily to teach literary analysis skills, rather it was
to illustrate that these devices are used to say that which cannot be said easily in words; a stategy often used
by patients when they cannot/do not know how to describe what is happening in
their bodies.  Curiously, as the sessions
progressed the hetergenous nature of the group led to increasingly lively
discussions as participants became increasingly aware of how their different
perspectives and backgrounds enriched
the reading and understanding of the texts being analysed.

In each session,
following close reading, participants
carried out a creative/reflective writing
exercise by writing freely for five minutes (i.e., in any form of their choice:
text or loose sentences; fiction or non-fiction, prose or poetry) on the basis
of a prompt related to the text previously read (e.g., the prompt used to
Ondaatje’s text was “Caring …”). Subsequently, participants were free to read
their writings aloud to the rest of the group, and participants' written texts
were discussed technically using close
reading techniques.

The week after the
intervention ended two distinct semi-structured focus-group interviews – one
with the HS (potential health patients) and another with the MS (future health
carers) – were carried out to obtain a qualitative analysis of the results of
the training, with a view to gaining insight into the perceptions that participants
had on the intervention’s impact on their role as health carers (in the MS) or
as health patients (in the HS). The interviews were implemented on the basis of
prepared scripts covering a variety of areas: general perception of the
intervention; general changes provoked by it; its impact on general and
specific aspects of the role as health carer (for the MS) or the role as health
patient (for the HS).

A thematic
analysis (MILES and HUBERMAN, 1994) was carried out to analyze participants´
answers regarding their perceptions of the intervention’s impact on the role of
patients or carers. The answers to the interviews were first deductively
segmented in units on the basis of a
thematic criterion that coincided with the areas
of the interview scripts. Resulting units
were then inductively categorized, in order to construct a categorizing system
that was then applied for a second loop categorization of all the units. Validity of the categorization
system was assessed as this was applied to the totality of segmented units by an independent judge and calculus of agreement with
categorization was obtained (agreement coefficient = 97.1%).

RESULTS & ANALYSIS

The results refer
to participants’ overall perception of wide-ranging changes provoked by the
intervention, as well as its impact on general and specific aspects of the role
as health carer (for the MS) or the role as health patient (for the HS). As the
questions in the interviews were different, the answers will be presented
separately for each group  in two
distinct tables (table 1 and 2). The analysis, however, will be presented
together.  We will begin with the MS
results.

Table 1 - Medicine students’ perceived
intervention induced changes on their health carer role

Area of Change

Change

Supporting Extract from Interview

Attention

Attention
in general

(increase
in attention

in general)

“I changed,
[it] drew my attention to some things.”

Systemic

(increase
in attention to the

patient as
a whole)

“(…) a
person is not only words, there is always something more.”

Attention
to discourse

(increase
in attention to the

discourse
of the patient)

“I am going
to listen with more attention.”

Analysis

Interpretation

(improvement
in the interpretation of the discourse of the patient)

“(…) [it
improved] the way in which I interpret what people say.”

Diagnosis

Diagnosis
in general

(improvement
of diagnosis in general)

“We have
another capacity [for diagnosis].”

Relationship

Relationship
in general

(improvement
of the relationship with the patient)

“It helped
me to deal with patients.”

Treatment

Individual

(improvement
of the personalization the treatment of the patient)

“[dealing
with] (…) a person as an individual. Every case is an individual case.”

Systemic

(treating
the patient as a whole person)

“Yes, yes,
speaking to other doctors who attend the patient [to coordinate the
treatment].”

Identity

Flexibilization

(flexibilization
in professional identity)

“(…) made
me see that I do not have to [only] follow a set reference sheet.”

Humanization

(humanization of identity)

“(…) to be
a more humane person.”

Source: semi-structured focus-group
interviews

As can be seen in
Table 1, the analysis of MS interviews demonstrated extensive modifications in
the perception of the role of health care provider.   A general rise in attention was indicated on
the part of the caregiver (e.g., “I changed, [it] drew my attention to some
things.”). An increased attention to patients’ discourse, to patients as a
whole and to the interpretation of their discourse was also registered (e.g.,
“I am going to listen with more attention.”; “ (…) a person is not only
words,  there is always something more.”;
“(…) [it improved] the way in which I interpret what people say”.

The relevance of
an enlarged discourse with other caregivers when reaching diagnosis and
prescribing treatment was also noted (e.g., “Yes, yes, speaking to other
doctors who attend the patient [to coordinate the treatment].”); as was a move
towards a more personalized approach at a systemic level to the medical
encounter (e.g. “[dealing with] (…) a person as an individual. Every case is an
individual case.”). Regarding perspectives on the changes in identity, MS
participants registered that the intervention helped the development of a more
flexible perspective on professional identity (e.g., “(…) made me see that I do
not have to [only] follow a set reference sheet.”) and increased humanization
e.g., “ (…) to be a more humane person.”).

Table 2 - Analysis of HS interviews also revealed modifications in
participants’ perceptions on their role as health care patients.

Area of Change

Change

Supporting
Extract from Interview

Attention

Attention

(increase in attention to

the condition of patient)

“ (…) fico mais alerta para as coisas que se passam/passarão comigo
[como doente ou utente de cuidados de saúde].”

“(…) I will be more alert to the things that are happening/may happen
to me [as a patient].”

Comprehension

Valorization

(increase in valorization in

understanding the condition

of the patient)

“I think that it is important to be aware, have an
idea of what may be wrong with you [organically].”

Relationship

Attention to Relationships

(increase in attention to

relationships with carers)

“(…) I will pay more attention to the questions the
doctor asks me.”

Facilitating [Relationships]

(increase in motivation to

facilitate relationships with

carers)

“I will try to facilitate the doctor- patient
relationship.”

Source: semi-structured focus-group
interviews

The interviews
indicated, above all, that participants registered modifications in their
understanding of the relevance of self-observation and paying attention to
their physical conditions/symptoms as a patient (e.g., “(…) I will be more
alert to the things that are happening/may happen to me [as a patient].”).
Moreover, altered perceptions of their potential relationship with caregivers
were also recorded. Participants registered an increased motivation to
cooperate more actively and accurately with caregivers (e.g., “(…) I will pay
more attention to the questions the doctor asks me”), and “I think that it is
important to be aware, have an idea of what may be wrong with you [organically].”)
Ultimately, their appeared to be a greater desire to facilitate interchanges in
the patient-caregiver setting (e.g., “I will try to facilitate the
doctor-patient relationship.”).

When
analysing  the group’s perceived changes
both in the role of potential health patient and carer; these appear to
indicate (to be further verified)  that
this type of intervention with close
reading and reflective wiritng of
literary narratives has the capacity to promote change and contribute to
modifying attitudes both in health patients and carers. This proposal is
verified by HS’s’ responses which indicate a more proactive stance in the
condition of being a patient and to the relationship with carers. MS’s answers
suggest an intensification in the orientation towards  patients, to the relationship with them, to
their narratives, as well as a desire to seek to offer a personalized
integrated treatment, and to procure a flexible and humane professional
identity.

It appeared that
analyzing fictional characters that are health patients and carers, together
with their relationships, contexts and stories (especially in a mixed group
like the present one), can alert participants to their own roles as a patient
or carer, and so influence the way experiences may be organized. This in turn
could be seen to encourage alterations in the ways these roles may be played.
Not only are these explanatory hypothesis reflective of the proposals made by
Narrative Medicine, they are also in keeping with findings from Psychology of
Art. The latter suggests that a variety of psychological processes are
activated by “reading/interpreting” fictional narratives in general and these
can impact on the reader’s identity and social roles. These include: deep and
selective attention to the narrative (CSIKSZENTMIHALYI, 1992; GERRIG, 1993;
OATLEY, 2011); empathy and alliance with characters (e.g., KAUFMAN and LIBBY,
2012; PERSSON, 2003); development of theory-of-mind
and social perception (e.g. MAR et al. 2006; 2010); comprehension of characters
and narrative (e.g. OATLEY, 2011); vicariously
learning from characters (e.g., BRUNER, 2002, 2004); and moral development
(HAKEMULDER, 2000).

FINAL CONSIDERATIONS

In summary the
intervention, which introduced a group of potential health patients and carers
to close reading of and creative/reflective writing on literary
narratives on health, attests to the general value of this practice. Therefore,
this study contributes to the empirical grounding of the benefits of Narrative
Medicine (CHARON, 2006). It indicates
that introducing  (future) health carers
the close reading of and creative/reflective writing on of
literary narratives on health (eventually in the context of courses or
workshops) offers the prospect of a more complete and rounded approach to
healthcare. It also indicates that these practises seem to improve
participants’ expectations for experiences and relationships in this area.
Moreover, introducing (potential) health patients to Medical Humanities
education techniques and working with mixed groups including players “from
different sides” of the healthcare relationship appears to have the potential
to bring benefits to the care relationship as this offers all the members in
the care context greater awareness of their own role and the role of the other
in this environment supporting the proposals of Crawford and his team (CRAWFORD
et al, 2010). Thus, it can be proposed that this type of training may
contribute to the amelioration of health practices and systems.

Nevertheless, the results of this exploratory
study must be carefully read considering the reduced number of participants,
and the imbalance between HS and MS in the sample. The outcomes may allow
generalization to theory but they do not permit a generalization to the
population. A future implementation of similar studies with broader samples of
participants (and not only potential but also actual health patients and
carers) would be required for the latter. Moreover, future studies should also
consider a controlled (before-after) measurement of participants’ perceptions
of their roles of patients and carers; this was absent here. Also, if one
considers the concept of multiple intelligence, we know that  individuals can be stimulated in different
ways by different art forms. Thus, it would be relevant to carry out similar
studies with artisitc objects from other and mixed domains. However, while the
findings of this pilot study may be limited due to the sample size, we consider
that they are indeed encouraging and the work should be continued.

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[1] This pilot study was carried out within the context of a Masters
thesis in Educational Psychology (3rd author) and in connection with the
Medical Humanities Research Project based at the ULICES (University of Lisbon
Centre for English Studies).

[2] This group resulted from open invitations
for  participantion in a Narrative
Medicine study issued in a Medical Faculty and a School of Arts &
Humanities.