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Re-claiming the Power of Definition—The Value of Reflexivity in Research on Mental Health at Risk

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Abstract

Being confronted with health risks implies challenges to mental health and well-being, requiring persons to find a balance between threat and confidence. The ‘power of definition’ with respect to health risks predominantly lies with professionals, implying that there is one appropriate way of understanding and interpreting risk-related information. This chapter will invite for a reflection on the potential of qualitative research in re-claiming the power of definition, offering the opportunity for a co-construction of concepts such as risk, vulnerability, and mental health. The aim is to highlight the particular value of different methodological approaches for opening up definitional spaces between scientists and research participants. It is grounded in the assumption that persons faced with a health risk construct their personal narratives to find a meaningful way to manage their situation, embedded in their biographical and social context. Narrative interviews with persons faced with a mental health risk were analysed in a circular process using complementing methodological perspectives from two disciplines: ethnology and linguistics. The findings were situated within a sociology of knowledge framework, focusing on the power of definition concerning a person’s health and health risks. Herein, particular attention was drawn to ethical and methodological issues of assessing concepts such as ‘risk’ or ‘vulnerability’; and the importance of (self-)reflexivity in conducting research in this field. Methodological reflection on these issues may contribute to constructively dealing with the tension between a standardised biomedical conception and an open, bottom-up approach to health knowledge in a medically oriented scientific environment.
Chapter 7
Re-claiming the Power
of Definition—The Value of Reflexivity
in Research on Mental Health at Risk
Mariya Lorke, Carolin Schwegler, and Saskia Jünger
Abstract Being confronted with health risks implies challenges to mental health
and well-being, requiring persons to find a balance between threat and confidence.
The ‘power of definition’ with respect to health risks predominantly lies with profes-
sionals, implying that there is one appropriate way of understanding and interpreting
risk-related information. This chapter will invite for a reflection on the potential
of qualitative research in re-claiming the power of definition, offering the opportu-
nity for a co-construction of concepts such as risk, vulnerability, and mental health.
The aim is to highlight the particular value of different methodological approaches
for opening up definitional spaces between scientists and research participants. It
is grounded in the assumption that persons faced with a health risk construct their
personal narratives to find a meaningful way to manage their situation, embedded in
their biographical and social context. Narrative interviews with persons faced with a
mental health risk were analysed in a circular process using complementing method-
ological perspectives from two disciplines: ethnology and linguistics. The findings
were situated within a sociology of knowledge framework, focusing on the power of
definition concerning a person’s health and health risks. Herein, particular attention
was drawn to ethical and methodological issues of assessing concepts such as ‘risk’
or ‘vulnerability’; and the importance of (self-)reflexivity in conducting research
in this field. Methodological reflection on these issues may contribute to construc-
tively dealing with the tension between a standardised biomedical conception and
an open, bottom-up approach to health knowledge in a medically oriented scientific
environment.
Keywords Mental health risk ·Risk perception ·Dementia ·Psychosis ·Narrative
approach ·Semantics ·Linguistic analysis ·Ethnological approach ·Sociology of
knowledge ·Meaning-making
M. Lorke ·C. Schwegler
Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health, University of
Cologne, Cologne, Germany
S. Jünger (B
)
Department of Community Health, University of Applied Health Sciences, Bochum, Germany
e-mail: saskia.juenger@hs-gesundheit.de
© Springer Nature Switzerland AG 2021
M. Borcsa and C. Willig (eds.), Qualitative Research Methods in Mental Health,
https://doi.org/10.1007/978-3- 030-65331- 6_7
135
136 M. Lorke et al.
Introduction: Mental Health ‘at Risk’—Challenging
Definitions and Methodologies
From a sociology of knowledge perspective, knowledge is thought to be created
through a process of discursive construction (Berger & Luckmann, 1966). Scien-
tific knowledge—including medical ‘facts’—is conceived of as socially, culturally,
and historically contingent (Fleck, 1979). Of central interest is the process of the
social production, transformation, and circulation of knowledge (Keller, 2011). This
includes the roles, the positions, and the level of (non-)authority assigned to different
stakeholders within the whole research undertaking.
While there are promising approaches such as user involvement or participatory,
user-led research (e.g. Byrne & Morrison, 2010), the field of mental health research
is still shaped by the predominant Western1paradigm of biomedical research. This
has implications for the entire research process, including the definition of research
questions (who defines them and which questions are considered relevant), theoretical
foundations, the choice of methodologies and methods of data collection and analysis,
the interpretation of findings and the conclusions drawn from these, as well as the
publication and implementation of outcomes. As a consequence, the way of doing
research shapes the reality of ‘mental health’.
This chapter will invite a reflection on the potential of qualitative research in
re-claiming the power of definition concerning mental health. Focusing on the expe-
riences of persons ‘at risk’ for a mental health problem, it aims at offering the oppor-
tunity for a co-construction of concepts such as risk, vulnerability, and mental and
(neuro)cognitive health. The aim is to highlight the particular value of the merger
of different methodological approaches for opening up definitional spaces between
scientists and research participants. It is grounded in the assumption that persons
faced with a health risk construct their personal narratives in order to find a mean-
ingful way to manage their situation and to (re-)gain a sense of agency, embedded in
their biographical and social context. Drawing on the technique of (self-)reflexivity,2
the potential and the challenges of qualitative research with regard to mental health
risk will be discussed.
1The term ‘Western’—despite not being undisputed—is used in this chapter in order to describe a
mind-set, a worldview that is a product of the development of European culture and diffused into
other nations like North-America (Ermine, Sinclair, & Jeffery, 2004, p. 5). ‘Western’ comprises
an archive of knowledge and systems, rules and values, as well as intellectual, political, economic,
cultural, and social constructs extracted from and characteristic of Europe and the Western hemi-
sphere (Pellegrino, 1992; Smith, 2012). It includes fundamental attitudes to nature, reality, and
knowledge (Sachs-Jeantet, Sagasti, & Salomon, 1994), hereby shaping the institutionalised social
system within which knowledge production is embedded.
2Weuse the term (self-)reflexivity in the sense of a self-critique concerning the process of conducting
research and producing knowledge. This self-critique demands examining our role as researchers,
reflecting on how our particular background (such as our disciplinary and institutional socialisation,
biography, values and attitudes, bodily constitution, or relationship to the interviewees) may interact
with the research process, and on the power of presentation when publishing this research (Breuer,
Muckel, & Dieris, 2019).
7 Re-claiming the Power of Definition 137
Being ‘at Risk’ in the Context of Dementia and Psychosis
Techno-scientific progress in biomedicine implies increasing opportunities for the
early detection of disease risks (Aronowitz, 2009; Clarke, Shim, Mamo, Fosket, &
Fishman, 2003). Advances in the field of predictive and preventive medicine can be
considered a blessing, since ever earlier prediction is associated with the promise of
better chances to prevent and treat disease and suffering. However, being confronted
with health risks also implies challenges to mental health and well-being, requiring
persons to find a balance between threat and confidence (Gillespie, 2012).
Both for psychosis and for dementia due to Alzheimer’s disease (AD), efforts
during the past decades were—and still are—directed at as precise and as early as
possible diagnosis of prodromal stages of the conditions long before the full clinical
picture can be observed.
In the case of AD, research aims to clinically identify early symptomatic stages
such as mild cognitive impairment (MCI) or the even preceding subjective cognitive
decline (SCD) (Albert et al., 2011; Jessen et al., 2014). MCI is associated with
a risk for the development of dementia which is increasing in combination with
a biomarker-positive testing (cerebral amyloid deposition and aggregation of tau
protein; Jack et al., 2018).3In the case of psychosis, symptom assessment checklists
and criteria for a ‘high-risk’ state were developed to identify the impending risk
for transition to psychosis. Terms such as the clinical-high-risk state for psychosis
(CHR), at-risk mental state (ARMS), or ultra-high-risk state (UHR) are used to
describe the condition of individuals assumed to be in a pre-psychotic phase and to
identify the impending risk for transition to psychosis (Fusar-Poli, 2017).
While there is agreement that early intervention is beneficial in terms of a person’s
long-term development, there is currently no unequivocal evidence concerning the
most effective and efficient preventive interventions for either conditions. Concerning
treatment options, in case of AD no cure exists to date. Meanwhile, the combination
and probabilistic form of medical risk factors leaves the individual unclear concerning
their relative effect, and without certainty about the future. Notwithstanding this, the
‘power of definition’ with respect to health risks predominantly lies with profes-
sionals, i.e., scientists or health professionals, implying that there is one appropriate
way of understanding and interpreting risk-related information, and transforming it
into health-promoting behaviour.
3MCI is connected with a 33% risk for developing dementia (Mitchell & Shiri-Feshki, 2009). MCI
in combination with biomarker-based AD is associated with an increased risk of up to 59% for
the development of dementia in the next three years (Vos et al., 2015). If the biomarkers remain
inconspicuous or partially inconspicuous, risk probabilities of 5 and 23% apply. This means, so-
called persons at risk do not only have to deal with the designation ‘persons at risk’ or ‘MCI-patients’
but also with the medically determined probabilistic understanding of risk (cf. Jack et al., 2018).
138 M. Lorke et al.
Making Sense of Risk—Risk Literacy and Meaning-Making
in Mental Health
People confronted with a health risk need to make sense of the information commu-
nicated to them, such as probabilities, percentages, prognoses, as well as recom-
mendations regarding prevention and treatment. Meaning-making can be consid-
ered as crucial in the process of coping with a challenging situation in life (Park &
Folkman, 1997). Risk literacy is defined in terms of mathematical and logical transfer
skills such as understanding percentages, estimating an individual risk based on a
population risk, and deriving appropriate decisions and actions from the ‘correct’
risk appraisal (Gigerenzer, Gaissmaier, Kurz-Milcke, Schwartz, & Woloshin, 2007).
However, critical health literacy as the capacity to critically appraise information
against the background of one’s personal lifeworld, values, and preferences, is much
less in the focus of research and public debates (Sykes, Wills, Rowlands, & Popple,
2013). Hence, it can be argued that the capacity to make sense of one’s own health risk
and to translate this meaning into some form of coping is predominantly defined from
a scientists’ and health professionals’ perspective, and is associated with patients’
virtues of listening to and adhering to medical advice. In relation to risk literacy,
Samerski (2013) describes the phenomenon of ‘epistemic confusion’ since a person
needs to conflate a statistical risk profile with his or her personal situation in order
to be considered as ‘risk literate’.
Scientific Knowledge Production and Power Relations
in Mental Health
Definitions of at-risk states in mental health require discussions about the transi-
tion between ‘order’ and ‘disorder’. Psychiatric and neurocognitive diagnoses are
used to categorise the emotional and behavioural traits to be considered as ‘disor-
dered’, hereby setting standards for ‘normality’ (Albert et al., 2011; Timimi, 2014).4
The conception of ‘disorder’ is highly debated in the field of mental health (Frances,
2014; Gronemeyer, 2013; Schaarschmidt, 2018; Wakefield, 2012). Psychiatry claims
for itself the power of definition as to which behaviour or cognitive state is healthy
and which is deviant, pathological, and in need of treatment. Discussions about
the nature of a mental disorder, its aetiology, and the validity of risk factors are led
among clinicians and scientists, while people experiencing the risk-related symptoms
or syndromes are usually understood as the recipients of the resulting knowledge,
4All preliminary stages of dementia symptoms are defined as still being able to perform everyday
tasks without larger limitation, even if now and then it may be necessary to overcome word finding
disorders, forgetfulness and disorientation (as with MCI). Only in a second step biomedical markers
of risk become relevant, but then with a strong classification and the label ‘risk for AD’, not only
cognitive decline (of any category).
7 Re-claiming the Power of Definition 139
not as experts entitled to partake in the debate or in the planning of their thera-
peutic process. Moreover, explanatory models tend to be increasingly dominated by
biomedical perspectives (Bearden & Forsyth, 2018), while other approaches such as
psycho-dynamic explanations or patients’ self-experience are upstaged (Schultze-
Lutter, Schmidt, & Theodoridou, 2018). At the same time, mental health problems
and cognitive decline are seriously stigmatised, resulting in social labels based on
arbitrary societal and medical norms. For example, medical, scientific and public
discourses about dementia or schizophrenia tend to be catastrophising (e.g. Zeilig,
2014), shaping the political, social, and medical narratives around AD and psychosis.
In this chapter, we aim at adopting a bottom-up approach to gain an in-depth under-
standing of the individual constructions of meaning among persons whose mental
health is considered being at risk: How do they make sense of this information? How
do they describe their situation, either with or without referring to the term risk?
What are the implications of the awareness of their risk for their everyday life?
Researching Mental Health ‘at Risk’: Methodology
and Method
Narrative interviews with persons faced with a health risk in different clinical fields
(psychosis and dementia due to AD) from two studies (RisKomp, hereinafter ‘study
on psychosis’ and PreDADQoL (cf. Rostamzadeh et al., in press), hereinafter ‘study
on AD’) will constitute the empirical base for the analyses in this chapter. The
differences between the approaches in both studies are described in more detail
in Box 1. Overall, narratives will be analysed in a circular process using comple-
menting methodological perspectives from two disciplines: ethnology5and linguis-
tics. Herein, particular attention will be drawn to methodological and ethical issues
of assessing concepts such as ‘risk’ and ‘vulnerability’; as well as the importance of
(self-)reflexivity in conducting research in this field.
The two studies we refer to in this chapter both employ a qualitative design
emphasising significant similarities in terms of the value of narratives. We aim at
addressing the benefits and challenges of mental health research based on narrative
knowledge, outlining the role of (self-)reflexivity in the research process by merging
the findings from 20 interviews (10 from each study). In the following paragraphs,
we will provide a short overview of the methodology used in both studies, focusing
on sampling strategy, interviews, reflection, and analysis.
5For this contribution, we employed an ethnological approach to make use of a theoretical frame-
work for comparative analysis with the aim to gain insight into both cultural phenomena and research
processes concerning ‘persons at risk’ of psychosis or AD. While ethnography refers to a method-
ological approach based on fieldwork for the in-depth study of a particular culture, ethnology allows
for comparison and the identification of overarching structures, principles, and relationships (Flem-
ming, 2010). An ethnographer is constructing a theory that will make intelligible what goes on in
a particular social universe. A comparativist (i.e., an ethnologist; author’s note) is trying to find
principles common to many different universes (Goodenough, 1956, p. 37).
140 M. Lorke et al.
Sampling Strategy
Since there are hardly any evidence-based guidelines for the ideal size of the sample
(Guest, Bunce, & Johnson, 2006), the decision on the sample size was taken based
on the research question, the choice of methods, the sampling strategy and the avail-
ability of research resources. Also, we took the conventions in research literature and
practice (Mason, 2010) into consideration. Our project partners6recruited the study
participants according to collaboratively defined inclusion and exclusion research
criteria, based on medical indications.
Data Collection
The qualitative data of ‘persons at risk’ were collected by means of narrative inter-
views (psychosis) and episodic interviews with a main narrative and a minor semantic
part (AD) which both led to a significant proportion of uninterrupted narratives and
free-flowing interactions (see methodological details below). As a central method of
ethnographic as well as linguistic approaches (Deppermann, 2013; Groleau, Young,
& Kirmayer, 2006), narrative and episodic interviews produce data that can give
an insight into a person’s individual perceptions, stratifications of experience, and
entanglements of life-events (Schütze, 1983). A particular feature of our study on AD
was the inclusion of one close other (e.g. spouse or close family member) with each
patient. It is a common practice in memory clinics that a relative is closely involved
in the diagnostic procedures and the counselling appointments. It was hence our
aim to learn more about their individual perception of the (troubling) prospect to
be a caregiver or even the present experience of being a ‘pre-caregiver’ (Largent
&Karlawish,2019). The dyads (of patients and close others) were interviewed
separately but directly one after another.
Methodologically, we aimed at generating hypotheses on how persons
confronted with the condition of being ‘at risk’ interpret this information
and how they make sense of it in the context of their lifeworld. We therefore strived
for a participatory perspective in defining our central concepts based on our inter-
viewees’ individual perceptions and experiences, in order to generate theories on
the subjective meaning of risk grounded in these empirical findings, and to let them
re-claim the power of definition.
With a view to such explorative outcomes, the methods of the guided narrative
interview (Nohl, 2017) and the episodic interview (Flick, 1997) seemed to provide a
fruitful ground for data collection (cf. Box 1). In both studies, a topic guide was used
flexibly in the interview process in order to provide adequate space for the individual
narrative construction. By asking further in-depth questions on aspects brought up
6In the case of psychosis, the FETZ (Cologne Early Recognition and Intervention Centre for mental
crisis), and in the case of AD, the ZfG (Cologne Memory Clinic), both at the department of Psychiatry
and Psychotherapy at the University Clinic of Cologne, Germany.
7 Re-claiming the Power of Definition 141
by the interviewee or questions on concrete situations of experiences the interviewer
could stimulate the generation of additional complementing and/or more detailed
accounts. This can provide not only information on the personal background and
perceptions of risk, but also on how these are described in the interviewees’ everyday
language and embedded in social processes and cultural contexts.
Interview Procedures
In the study on psychosis, we used narrative interviews with the aim to put our inter-
viewees’ own perspective, interpretation, and subjective constructions of meaning
at the centre of their accounts. A flexible topic guide was employed to allow for
the unfolding of free narratives and the emergence of unexpected topics. We started
the interview with an open question on a concrete situation in which individuals got
confronted for the first time with the information of an increased risk. To elabo-
rate more in depth on issues raised during the interviewees’ initial open narrative,
focused questions were used for explication, reflexion, or to invite for more detailed
accounts (Groleau et al., 2006; Nohl, 2017). For in-depth exploration, the inter-
view guide included topics based on existing research (family, identity, othering,
health literacy) and additional questions formulated by the research team during the
preparation phase. These were mobilised flexibly throughout the interview proce-
dure (opening/formal phase, opening question, additional in-depth questions, closing
phase), taking up the interviewees’ preceding accounts and referring to their wording.
In the study on AD, we used episodic interviews as a useful approach to rele-
vant experiences in life. The underlying idea is the differentiation of so-called world
knowledge into two parts: Firstly, episodic knowledge which comprises knowledge
that is linked to concrete circumstances (time, space, persons, events, situations),
secondly, semantic knowledge which is more abstract, generalised, and decontextu-
alised from specific situations and events (Flick, 1997). In the episodic part, which
leads to narrations, the interviewer asks (chronologically) for specific situations from
the life of the interviewee (before and after risk prediction and within those two times
for situations of the everyday life, social environment, current situation, expectations,
visions for the future, hopes and worries) in order to gain episodic knowledge. It is
particularly important for the later linguistic analysis that central terms are not prede-
termined and that the questions are as ‘innocuous’ as possible from a lexical point
of view. For example, “Can you describe to me how and why you got here?” (the
interviews took place in the memory clinic). In-depth question: “Can you tell me a
specific situation that explains to me how you felt about it?”. With a reduction to
deictics (here, it) the interviewees are invited to select and moreover name the central
aspects themselves.
The last part of the episodic interview focuses on semantic knowledge which is
achieved through semantic questions, i.e. questions for personal definitions, percep-
tions and understandings of certain terms which were used by the interviewee during
the interview or are generally of interest for the study. The statements can be combined
142 M. Lorke et al.
and contrasted with the narratives and also help to interpret certain statements of the
interviewees (as well as the quantitative data of the study; cf. Rostamzadeh et al. (in
press)).
Reflexivity
In order to make researcher’s thoughts, feelings and subjective factors in the research
process visible, we decided to employ different reflection methods in the two studies.
In the case of psychosis, we developed a reflection-tool integrated in the interview
guide consisting of two subparts—notes (descriptions) and memos (interpretations
and feelings). It enabled the researchers not only to analyse the ‘subjectivity factor’
in the overall analysis process, but also to reflect their own attitude and behaviour
after each interview and so contribute to an increased richness of data.
In the case of our study on AD, we added metadata to each interview as material
for the reflexive process. It includes additional aspects of the interview that cannot or
was not recorded via audio taping, conversations and expression from the counselling
physician, and impressions from the first meeting with both participants from one
dyad (patient plus one close other). Concerning the analysed interview data, the
linguistic approach of the interactional analysis (Deppermann, 2008) is not only
focusing on expressions the interviewee utters but also the interviewer’s assertions.
In this way, the interviewer’s statements also become objects of the (team) analysis
and evaluation which encourages the reflection process. Since linguistic analysis is
focusing on ‘how’ and not only ‘what’ was communicated, it is necessary for the
interviewer to try to avoid certain key terms and predeterminations of vocabulary.
Analysis
In both studies, we focused on the multi-perspectivity of perception and strived to
reveal various levels and modalities of the concepts concerned. The following para-
graphs will demonstrate this by means of a detailed description of findings concerning
the interviewees’ perception and appraisal of their condition of being ‘at risk’, and
by reflections on the methodological opportunities and challenges we encountered
throughout the research process. The data used in the following discussion part orig-
inate from the interviews (psychosis and AD), the reflection-tools (psychosis), and
single aspects of the metadata protocols (AD) (Box 1).
In the field of health sciences, interviewees’ statements are often analysed from
a thematic point of view, considering the interview as textual access to the social or
psychological reality of interviewees, hence representing a more realist approach to
data analysis (Willig, 2012). By contrast, in our analysis we strived for a more rela-
tivist perspective, understanding the interview narratives as situated co-constructions
between interviewee and researcher.
7 Re-claiming the Power of Definition 143
Our ethnological approach was embedded in the Reflexive Grounded Theory
methodology (Breuer et al., 2019). To enrich and complete our core data set of narra-
tive interviews, we worked with additional data in the form of field notes, memos,
and “thick descriptions” (Geertz, 1973) based on our self-reflection tools. Further-
more, we integrated reflexivity in the process of data analysis as a tool to make the
researchers’ subjectivity visible (Reichertz, 2015). Apart from this methodological
triangulation (Denzin, 1970), we also strived for a researcher and theory triangula-
tion which can be considered as crucial for an ethnological approach to our research
field. The involvement of different disciplines within the research team allowed for
a complex range of perspectives on the data, approaching it from different angles
in terms of concepts and theoretical frameworks. The ultimate goals of our analysis
were (1) to get as close as possible to the actors and let them speak for themselves, in
their images and narratives; and (2) to generate preliminary theoretical explanations
based on the empirical data.
The linguistic approach of interactional analysis (Deppermann, 2008) under-
stands interviews as situated practice in which social structures of meaning are
jointly created. Both the interviewees’ and the interviewers’ assertions are focused
upon equitably during the process of analysis (even though the research questions
and overall results might focus the interviewees’ perspective only). As Deppermann
(2013) points out, this approach prevents the analysis of the interviewee’s statements
without the reflection and analysis of what the interviewer emits or adds to the conver-
sation—and most importantly ‘how’ he or she communicates. For this reason, it is
essential that the audio-data is transcribed into the linguistic GAT2 system (Selting
et al., 2009) which is close to the “Jefferson transcription system” and implies that
overlaps of conversation elements, interruptions, and pauses are accurately repre-
sented. Furthermore, it appears to be a fruitful approach to consider the questions
‘what’, ‘how’, and ‘why’ successively and iteratively during the analytical process
to shed light on relevant spoken elements, linguistic practices, forms, and semantic
aspects as well as functions of those (Birkner, 2006).
For an integration of both the linguistic and ethnographic approach, we employed
a comparative meta-analysis of the existing data in both projects in order to explore
in-depth the findings and the methodological lessons learned from doing research
on risk in the context of mental health. After data from the two projects had been
analysed separately to answer the respective research questions, we discussed our
findings and observations across both projects within the research team; and we
compared our category systems in terms of intersections and differences. In this
way, we identified our central categories with regard to the condition of being at
risk (cf. section Insights from the Interviews: Naming, Explaining, and Coping’):
naming, explaining, and coping; and we discovered overarching issues in terms of
reflecting on our methodology and the research process (cf. section Methodological
Reflection: Negotiating Vulnerability and Normality and Box 2).
144 M. Lorke et al.
Box 1: Overview of the two studies presented in this chapter
Study on AD Study on psychosis
Name Ethical and Legal Framework for
Predictive Diagnosis of Alzheimer’s
Disease: Quality of Life of Individuals
at Risk and their Close Others
(PreDADQoL)
Health Literacy in Persons at
Risk—From Information to Action
(RisKomp)
Project leaders Ceres, the Cologne Center for Ethics,
Rights, Economics, and Social
Sciences of Health, University of
Cologne
University Hospital Cologne
Fundació ACE Barcelona
Ceres, the Cologne Center for Ethics,
Rights, Economics, and Social Sciences
of Health, University of Cologne
University Hospital Cologne
Study design Binational longitudinal mixed methods
study including an ethical and legal
framework (cf. Rostamzadeh et al., in
press)
Multi-method study including
systematic reviews and qualitative
interviews
Aims of the study (1) to determine attitudes and
expectations towards the AD-risk
prediction and elucidate the effect
on the participants’ QoL in order to
provide a guideline for information
and counselling; (2) to discover
semantic content and
multiperspectivity of concepts such
as risk, QoL, satisfaction and
well-being
(1) to better understand health literacy
of ‘persons at risk’ in four different
clinical fields, (2) to underpin it
conceptually and (3) to make it
fruitful for health care
Participants Persons at risk for dementia due to AD,
namely patients with MCI, who can
optionally undergo a risk prediction,
and one close other (family member; as
an individual, not as a proxy informant)
each (person at risk +close other =
dyads)
Persons with an increased risk of
developing a certain disease or an
unfavourable course of the disease in
four clinical fields: familial breast and
ovarian cancer, coronary heart disease,
psychosis and AD
Data of the project Quantitative data from 50 dyads at 3
visits (in Cologne and Barcelona),
qualitative data from 15 dyads at 2
visits from the German side only
Qualitative data from 40 narrative
interviews (10 in each clinical field), 40
body-maps and 40 field notes data sets
Data used for this chapter 10 episodic interviews with narrative
parts of around 30 min each, 5 from
baseline (before predictive testing), 5
from the 3-month follow-up
10 narrative interviews with an average
duration of 61 min, 10 field notes data
sets
Data type Audio-data, transcripts (GAT 2, basic) Audio-data, transcripts, field notes data
sets
Collection of metadata Demographic data, medical
records/explanations, interview
metadata (interviewers’ impressions
and crucial non-verbal aspects on the
background, the atmosphere or
information the physicians shared with
us in advance/after the interview)
used only additionally
Socio-demographic data (age, sex,
marital status, cultural, educational and
professional/occupational background)
and field notes
(continued)
7 Re-claiming the Power of Definition 145
(continued)
Study on AD Study on psychosis
Method Episodic interviews with a main
narrative and a minor semantic part
(Flick, 1997)
Narrative interviews (Nohl, 2017)
Interview topics Everyday life, social environment,
current situation, expectations, visions
for the future, hopes and worries
Perceptions and experiences of risk,
health and sickness, identity, family,
everyday life, current situation, coping
strategies, otherness and health literacy
Procedure Chronological according to the
participants’ experiences, beginning
with the first impression or feeling of
impairment (at baseline), impressions
and feelings since the risk disclosure
(at 3-month follow-up), both
thematically open
(1) Open question (“Tell me about the
first time when you were
confronted with the topic of being
at risk of developing psychosis?”),
(2) free part and (3) body-mapping
exercise (“How would you depict
the feeling of being at risk of
developing a psychosis?”) with
comment on the drawing
Significant aspect Questions and in-depth questions on
concrete situations and experiences,
semantic questions
Narrative interviews combined with
memos (to make the researcher
subjectivity visible)
Method of analysis Linguistic interaction analysis with a
focus on lexical and semantical
aspects; metadata protocols as an
analytical support, but focused on the
aspects of perception that are revealed
trough individual linguistic expressions
(Birkner, 2006; Deppermann, 2008,
2013)
The process of data analysis was
embedded in the Reflexive Grounded
Theory (Breuer et al., 2019) based on
three pools of data—the interviews (as
audio and transcription), the body maps
(incl. the verbal comments on them)
and the field notes data sets (in the form
of self-reflexion tools)
Results and Discussion
The following section consists of two subparts, which draw a common line of method-
ological reflection across both projects, hereby emphasising the opportunities and
challenges that our teams faced doing qualitative research on mental health within the
context of risk and medical prediction. It encompasses content-led results in negoti-
ating vulnerability and normality from a bottom-up perspective (‘Insights from the
Interviews: Naming, Explaining, and Coping’), and process-led reflexivity discussing
the interview as a method of data generation, the negotiation of roles and respon-
sibilities, as well as ethical reflections throughout the research processes (‘Method-
ological Reflection: Negotiating Vulnerability and Normality’). The sub-sections
mirror methodological opportunities and challenges in the field of tension between
biomedical understandings of risk and a person-oriented bottom-up approach.
146 M. Lorke et al.
Insights from the Interviews: Naming, Explaining, and Coping
The notions of vulnerability and normality play a central role in all steps of the
research process and in all levels of content generation. Defining the persons at
risk as a vulnerable group in the beginning of the research process challenged the
idea of mental resilience, the explanatory models of risk, and raised questions about
the factors that trigger and/or regulate this vulnerable condition. We will present
findings from both studies along three categories that we identified in the interviews
with regard to the condition of ‘being at risk’: naming, explaining and coping. These
categories are selected because they thematically summarise essential stages of the
process that occurs within the scope of ‘being at risk’ or ‘learning to be at risk’.
Naming
The naming of risk can have diverse implications in the context of different condi-
tions, as the following comparison of our interviews will illustrate. During the inter-
views with persons at risk of psychosis, it became clear that the naming of this
condition in the context of the diagnostic process had been perceived as a relief
rather than a threat. One reason was the affirmation of one’s own perceptions, and an
‘acquittal’ of being suspected of working oneself up into the perception of strange
sensations, and all symptoms being just an imagination:
PSYP03 (Interviewee; study on psychosis)7
436 When you talk to some friends or so about it, who don’t really know anything about
437 it […] I’ve already heard it once or twice: Yes, I think you’re exaggerating a bit,
438 or something. That is of course […] hurtful. But if someone who’s studied that and
439 says that, uh, so… says: Yes […] You’re right, you have that… and you actually
440 have a problem, that’s very affirmative… in, so, for me […]. Well, it didn’t
441 scare me now either, but I thought by myself: Now I know […], I can do something
442 about it. That’s the first step.
The hard-to-communicate experience of ambiguous symptoms was replaced by a
tangible and nameable condition of being at risk of developing psychosis. The latter
might be perceived as more favourable, presumably because it can be explained by
biomedical knowledge and is more strongly connected to body processes.
The impact of risk on people’s lives and the notion of naming and vulnerability
also became obvious in terms of the role as a “patient”, which reveals the close
relation between the phase of naming and explaining the ‘at risk’ condition. This
role could be seen pragmatically, willingly engaging oneself with it, as reflected in
the first quotation; or as an enigma, to a certain extent associated with a loss of
definitional control, as emerging from the second quotation:
7The interviews were conducted in German language. Quotations were literally translated by the
research team; for better readability, language and grammar were smoothened (e.g. omission of
repetitions).
7 Re-claiming the Power of Definition 147
PSYP01 (Study on psychosis; P: interviewee; I: interviewer)
1098 P: (laughs) Has now rented a, uh, practice or so, a room and I am now one of the
1099 first patients, so.
1100 I: Oh so, ok. Because
1101 P: =Is it called ‘patients’?
1102 I: Yes, there are always discussions about it. Some say clients, others say
1103 patients=
1104 P: =Bähh, clients. Like somehow it’s a as if I give her money (laughs)=
1105 I: =Yes, I, uh, I always find that difficult, because I actually also don’t want to
1106 say ‘patient’ either, because you are now my interview partner, for example. But
1107 when you’re so medically minded, you automatically say ‘patient’.
1108 P: =Yes, so I don’t find anything reprehensible about the term, so, it, I’m just de
1109 facto one.
PSYP04 (Interviewee; study on psychosis)
1015 And yet the feeling afterwards was as follows: Now somehow for one and a half or two
1016 hours we have spoken to each other and described the problem as it were and that from
1017 this comes a diagnosis, yes, a diagnosis, or that somebody somehow can get an idea of
1018 something, uh, and just then with such standardised questionnaires somehow, uh,
1019 therefore, hard to imagine… for me, or… yes, if you are perhaps not a specialist,
1020 uh, that you then have a clear picture of what is happening with these diagnostic
1021 instruments.
In our interviews with persons at risk for AD, the ‘possibility to give a name’
to the situation after the predictive biomarker testing sometimes is not experienced
as a relief but as a reason for their behaviour and a confirmation of their perceived
cognitive problems or the distrust towards their own mind. One participant (AD04,
MCI patient) pointed out that with a conspicuous test result she “had something to
say” when someone wonders why she “behaves so strangely”. Her husband (AD04,
close other), who was interviewed as part of her dyad, supported the positive effect
in his narrations. He mentioned that with a conspicuous test result he knew that his
wife “did not deliberately ignore him” but “acted in her disease”. In this case, a
medical label in the form of a risk status helps especially (close) others to classify
the perceived ‘abnormal behaviour’ and to find explanations for it—even if those
aren’t entirely certain.
In the baseline interview—before the predictive testing—most of the participants
showed a strong reaction to the terms ‘dementia’ or Alzheimer’s disease dementia’,
even if the interviewer did not use the word in her own expression, but only referred
to the associated documents or situations in the interviewee’s life. This reveals a
different attitude to ‘naming’ at baseline compared to the follow-up interviewafter the
predictive testing. In the baseline-interviews from our study on AD, some participants
started to tell a story about a specific situation in which the idea of ‘being at risk
for dementia’ simply became ‘dementia’ and led to a different treatment or even
discriminating actions as in the interview segment below (AD01). For the linguistic
analysis, it is crucial that the naming is performed by the participants themselves to
be able to analyse ‘how’ and ‘why’ something is communicated.
148 M. Lorke et al.
AD01 (Study on AD, baseline interview segment with an MCI patient)
204 P: on the referral he wrote dementia (.) he knows ehm he doesn’t KNOW what that
205 I have dementia -
206 I: the family doctor?
207 no that is true (-) he doesn’t [know;]
208 P: [ yes ]
209 I: assumed maybe [non that ] was his assOMPtion.
210 P: [yes yes- ]
211 he assumed that I have dementia;
212 I: hmhm.
213 P: that’s why the reception the receptionists are eh were suddenly different (.)
214 different to me;
215 I: oh okay I understand
216 but this is they don’t mean it (.) do you think they mean is in a harmful way?
217 P: no no ((laughs))they a shout over as if I were deaf or so and MRS SCHMI::::D
218 ((anonymized)) as if I was not normal -
219 they are they don’t know how to talk those to those with dementia ((laughs)),
220 I: you are more experienced there right you gathered experience with your mother how
221 to handle this did you say before;
222 P: yesyes -
223 I: and the receptionists maybe learn when there is written dementia on the sheet of
paper
224 learn to talk slower or something like that don’t you think,
225 P: yesyes ((laughs)) that is what they learn but he they don’t KNOW that I have
dementia
226 and talk like that to me because of a sheet of paper (.) yesyes.
At the beginning of the segment (204/205), the interviewee emphasises that although
“dementia” was on her referral from the family doctor, the latter does not know
whether she really has dementia. She emphasises the word “know” (204) and agrees
with the interviewer that it’s an assumption (211) but explains the consequences
immediately (213/214). From the emphasis on “know” (depicted in capital letters)
one can derive that the contrast between ‘knowing’ and ‘not knowing’ is very impor-
tant to the interviewee (‘assuming’ is introduced by the interviewer). The doctor’s
actions are perceived as irritating within this attitude. Later, after she had shared
her experience about the receptionists who suddenly behaved quite differently (and
visibly inexperienced) towards her due to the label “dementia” (217ff.), she returns
again to the aspect that the doctor did ‘not know’ anything concrete about her health
status (225) and that it is not okay to talk to her like this (she emphasises “so/like
this”) only because of a piece of paper (226) which underlines her distinction between
knowing and not knowing/assuming again. Asking the question ‘why’ she points out
consequences (actions of receptionists) and a responsible party (sheet of paper), one
can consider that she describes the deterministic aspect of the situation she was put
in.
In both studies, we found that the label ‘at risk of developing psychosis/AD’ plays
an important role in the process of negotiating the entanglement between symptoms
and personality, as well as the interrelation between labels for (naming), potential
causes of (explaining), and ways of dealing with (coping) the condition of being
‘at risk’. While the naming of risk can be experienced as a relief and a source of
agency, it can also entail a perceived loss of control and feelings of being trapped in
deterministic attributions.
7 Re-claiming the Power of Definition 149
Explaining
Current studies on physician-patient conversations in oncology show that physicians
strongly concentrate on treatment, while pushing questions about the cause of disease
into the background—even if patients repeatedly want to discuss the origin (Bentz
et al., 2016;Imo,2017). In our studies, the situation is different, because on the
one hand there is no treatment and healing (AD) and on the other hand therapies
are protracted and assumed to accompany persons for a lifetime (psychosis). The
question of origin or source is therefore one of the most pressing concerns here.
In the case of psychosis, our study shows that individuals’ explanatory models of
origin of the (risk of) disease consist of internal (undeserved—genetic; deserved—
behavioural) and external (undeserved—family, social environment and life events)
factors. Drug use can serve as a good example for these closely intertwined factors.
On the one hand, drugs are seen as a risk factor for getting mentally ill and the
experienced symptoms as a side effect of a certain lifestyle:
PSYP01 (Interviewee; study on psychosis)
266 And of course, especially when you start smoking grass, you get to grips with
267 the story, where it actually comes from and how it works and what THC actually is
268 and, um, then, in the course of that, you naturally also come across studies that
269 talk about the increased risk of psychosis from long-term consumption and (?)
270 Yes, and almost (laughs) I smoked that for almost six years. Um therefore
271 Well, I knew the risks, but I didn’t care about them.
On the other hand, drug use is perceived as a ‘defence mechanism’ and a way to regu-
late stress: Drugs play the role of ‘a catalyst’ that brings problems up to the surface
early enough to make them obvious for oneself and the others, hereby accelerating
the process of searching for help. This unavoidably raises questions of responsi-
bility: “I have the feeling that I have ruined an area in my whole life!” (PSYP08).
This feeling of guilt and responsibility has been an object of research in other clin-
ical fields (e.g. the notion of ‘genetic responsibility’ in familial breast- and ovarian
cancer—Etchegary et al., 2009, Hallowell, 1999). Here again, the tension between
biomedical versus individual biographical explanations (Holmberg, Waters, White-
house, Daly, & McCaskill-Stevens, 2015) becomes obvious. For the researcher, this
may imply being confronted with an expectation to provide an ‘objective’ opinion in
the context of a narrative interview, for example, concerning the question of whether
or not one is responsible for the condition of being ‘at risk’.
Parallel to this notion, individuals attempt to ‘normalise’ this ‘at risk’-condition
by labelling the “awkward moments” and “crazy thoughts” as “normal” for each
human being. The border between disease and health in this case is not marked by
the fact that these crazy thoughts emerge but by the way of handling them. Our
findings demonstrate that persons ‘at risk’ perceive the concept of risk in a fluid
dimension, with the impossibility of defining a starting and an ending point.
150 M. Lorke et al.
PSYP04 (Interviewee; study on psychosis)
796 But also a thing I didn’t think about at all before, so… so the basic attitude,
797 someday, you know? You can get any type of illness at some point, come down with
798 something, or somehow suffer from something. But so that, uh, there could actually be
799 something that somehow comes from the head and so without external influences, or
800 not. To say: Ok, you have this and that disease concretely, but that it is somehow
801 something that is not tangible.
In our interviewees’ narratives, we identified indications of how they construct
meaning concerning their situation; for example, they described their risk as an
inherent part of their biography. This reasoning was based on three sources of infor-
mation: (1) risk prediction is based on symptoms which are perceived as an inherent
part of the personality (“dreamy person” (PSYP03), “class clown” (PSYP01), “I grew
up with it” (PSYP06), “I usually fantasize” (PSYP09), “I was always the weirdo”
(PSYP10)) and thus a part of their ‘normal’ everyday condition; (2) prior experience
with other therapies; and (3) intuition.
In our study on AD, the question of origin or source was not one of responsi-
bility, even though behavioural risk factors have been described as well.8The risk is
depicted much more deterministically (‘the disease hits you’) regardless whether the
factors are internal or external. The essential way of dealing with the question of the
origin culminates in considerations about heredity and detailed stories about family
members with dementia. Some participants are quite sure that this will be their or
their partner’s “fate” (99), others hang on the hope “that the cup will pass them by”
as the participant in AD02 (091, 098).
AD02 (Study on AD, baseline interview segment with an MCI patient)
87 P: yes MAYbe I am er (.) I am OLDer than my brothers and they are quite er demented;
88 one of them Max ((anonymised)) we always- with him I always went outside for a walk
89 but this is difficult now;
90 I: why,
91 P: yes he is quite er er: demented now and I hope that this cup will pass me by (--)
92 but you never er know -
93 I: could you describe this feeling to me in a more detailed way?
94 P: I REALLY have poor preconditions with our parents it was like that with my father
95 first and with my mother later but she wasn’t so (.) so aggressive then-
96 but I am the third er the first but now the least ((laughs)) it doesn’t always
97 hit everyone.
98 I hope like I said that the cup will pass me by but my wife says that it is the
99 family’s fate (--) so far.
100 she also called ((the clinic)) and made the appointment.
The process of ‘explaining’ in the case of risk for dementia due to AD sometimes
even starts before the (new) ‘naming’ and may change in the course of the prediction
procedures. Perceptions and explanations are different before and after predictive
testing:
Before the predictive examination, two types of participants’ perceptions were
observed. Some pointed out that they are suffering from dementia, others that
8Biomedical factors for dementia due to AD are also combined with modifiable risk factors, such
as lifestyle-related factors (unhealthy diet, alcohol consumption, smoking, cognitive inactivity,
physical inactivity and low education), cardiovascular risk diseases (diabetes, hypertension, obesity)
and psychosocial factors (depression, social inactivity) (Livingston et al., 2017).
7 Re-claiming the Power of Definition 151
they are only ‘cognitively impaired’ and there is a strong possibility of remaining
or improving beside the option of dementia (cf. Schwegler, Rostamzadeh, Jessen,
Boada, & Woopen, 2017). Simultaneously, the latter explain duties or aspects from
their everyday life to demonstrate how they are integrated, needed, and still perform
well. For example, the interviewee (AD01) in a later segment points out that she could
no longer take care of her mother if she had dementia herself. After the predictive
examination, participants with two suspicious biomarkers (biomedical interpreta-
tion: 59% likelihood to develop dementia due to AD within the next three years)
did not mention the possibility of remaining or improving anymore, but still narrate
stories around their good performance to explain aspects of their capabilities to their
interview partner.
In summary, our findings show that different attribution patterns are involved
in the process of explaining one’s situation of being ‘at risk’. Relevant dimensions
concerning the origin or source of one’s risk are related to questions of fate and guilt,
internal or external causes, changes in explanatory models before and after risk
testing and disclosure, as well as the endeavour to normalise one’s experiences and
integrate them into one’s personal narratives. These different layers of interpretation
are strongly intertwined with the individual’s perceived and enacted opportunities to
cope with their condition.
Coping
The analysis of our interviewees’ accounts showed that the process of meaning-
making (Park & Folkman, 1997) with respect to the at-risk state is closely related to
individual coping mechanisms. The narratives reveal differences between persons at
risk of psychosis and AD in terms of their coping strategies and also with regard to
their experienced sense of agency and quality of life (QoL).
Coping in the context of risk for psychosis implies the notion of vulnerability in
terms of keeping-up with everyday life on the one hand and reflecting on one’s
individual illness prevention on the other hand. The notion of risk, the process of
meaning-making and coping appear to be tightly entangled. The risk symptoms are
perceived as a particularly strong and sophisticated warning and defence system
enabling individuals to get control over the condition of imbalance. Risk is seen not
as the enemy that should be controlled, but much more as a team player who can help
to control the symptoms, and as a protective mechanism for mental health of each
human being. As the quotations below exemplify, our interviewees’ narratives show
the potential of meaning-making as a resource for (re-)constructing order instead of
surrendering to disorder; for “achieving congruence between an individual’s global
meaning and the appraised meaning of a particular event” (Park & Folkman, 1997,
p. 116). Discussing risk with others is described as a strategy to understand and deal
with it. At the same time, it should not be given “too much space” in order to keep
the balance:
152 M. Lorke et al.
PSYP08 (Interviewee; study on psychosis)
361 As I’ve just explained, with me it’s stress that causes the symptom to get
362 worse. Well, I think it makes sense to know what’s there, but it shouldn’t
363 be over-, uh, over-dramatized.
In contrast to the medical understanding of risk as a threat, our interviewees’
accounts suggest that they also associate an idea of agency with risk, as the following
quotation illustrates.
PSYP10 (Interviewee; study on psychosis)
28 That is, there is a very high risk of, um, getting schizophrenia or
29 psychosis. Um. I know that in most cases it is determined by stress and
30 diet, thus determined by life. If one lives a healthy life and avoids
31 stress, then risk will in any case be lower.
The individuals in our study on AD are considered vulnerable because of their experi-
enced and medically ascertained cognitive impairments (MCI diagnosed). Although
they are still fully capable of shaping their everyday lives, they and their relatives
noticed that they display cognitive difficulties. In addition to the risk, these individ-
uals have to live with ‘first symptoms’ which they have to understand and evaluate
for themselves. One understanding of risk (in combination with minor symptoms) is
to implicitly go through and review the family history. Risk is strongly linked to heri-
tability, and in a next step to subjective certainty of suffering from AD, combined with
fear towards this condition. ‘Being at risk for AD’ basically does not trigger thoughts
of consequentialist agency, but traps some persons in deterministic attributions and
the search for explanations.
Overall, coping appears to be a process starting long before a risk disclosure
following predictive testing. Due to interviews at two points in time (before/after
predictive testing), our study on AD can shed light on different phases, variations
and manifestations of this coping process in individuals with MCI symptoms and a
risk for dementia due to AD:
Before the predictive testing some patients showed verbal self-distancing from
the possible disease or diseased persons: From a linguistic point of view, it is very
interesting that the interviewee in AD01 in her story (213–219) uses descriptive
elements and deictic expression to distance herself both in terms of time and space
from “those with dementia”/“them”. This is in line with the attitude that dementia is
just an assumption.
Directly following predictive testing, conspicuous test results can be shocking and
unexpected as described in AD03 as “a punch back” (039) which led to a “breakdown”
(042) and needed “time to digest” (045).
In the segment AD03, one can see from the progress of the conversational sequence
that normality can be restored within the narration: The interviewee begins at a
normality, which he summarises by himself as “everything was fine” (043). This
normality was disturbed by the conspicuous test result. Afterwards, he establishes a
‘new normality’ by comparing himself with a ‘truly diseased’ person on the one and
(average) persons at the same age on the other hand: “my father had it really badly,
7 Re-claiming the Power of Definition 153
but with me, it is something totally different. What I have is normal for my age, but
just, er, conspicious” (051–053).
After the predictive testing, in the light of first symptoms, some individuals developed
a more ‘conscious experiencing’ of future actions regardless of a result with two,
one or none suspicious biomarkers.
AD03 (Study on AD, 3-month follow-up interview segment with an MCI patient)
032 I: and then you came back in agAIn for the risk disclosure [right],
033 P: [yes ].
034 I: when the results were [THERE]-
035 P: [yes ]
036 er yes then the situation was a LITtle different.
037 I: mhm;
038 P: the professor was with us (.) huh,
039 and er this and that (-) and this and that was (.) of course a punch back (-)
040 er (---) but told me again YES oKAY but within a small er rANge
041 that one can do something or something IS to do if something happens -
042 an there I was inside I won’t say broke down this would be OVERstated.
043 but damn it, that CAN’t be (-) so far they told me everything was fine and it gets
044 better and then they told me so to say unconcerned nevertheless we found something;
045 then I needed some amount of time to digest that;
046 I: and now,
047 P: yes er basically like always;
048 before some days were good some were bad,
049 that is so to say normal in my age if I may put it this way (-)
050 I am continuing normally now.
051 my father so to say had it badly (-) really badly,
052 but with me (-) it is something totally different.
053 what I have is normal for my age (-) but just er conspicuous.
As this section illustrates, the interview can be a space for the negotiation of questions
about self-perception, self-awareness, agency and determinism, as well as for the
narrative restoring of (a new) normality.9
Methodological Reflection: Negotiating Vulnerability
and Normality
Throughout the research process, by means of reflexivity, we aimed at creating a
space for re-defining the power of definition, including notions of vulnerability and
normality, with regard to risk. In the following, we will discuss central methodolog-
ical issues that emerged in the course of our studies. These include the planning
and preparation of the study, the sampling strategy, the interview process, roles and
responsibilities between researcher and interviewee, ethical considerations, as well
as data analysis and interpretation. Our reflections aim at providing insights into
9Alongside to the role of meaning-making, the interrelation between coping with risk and QoL
became visible in both projects during data analysis. For example, the episodic interviews in our
study on AD provided us with the opportunity to capture differences between individual descriptions
of QoL (in the narrative part), concrete specifications (from the semantic part), and a ‘scientific’
understanding used in common definitions of QoL (c.f. Rostamzadeh et al., in press; Woopen, 2014).
154 M. Lorke et al.
opportunities and challenges related to the practice of doing research on risk in
mental health.
Ethical Considerations Concerning the Notion of ‘Vulnerability’
In the process of designing the research, we classified the condition of being consid-
ered as a person ‘at risk’ as vulnerable. This had implications for our ideas of the
appropriate way to encounter our study participants during the interview situation,
and for our assumptions about the impact of risk on their lives.10 But which impact
does this vulnerable condition have on the research process and the interview topics,
and how can the researcher handle it?
Although the narrative interviews were conducted based on a flexible topic guide
and open dialogue, the potential distress caused by certain individual topics was a
central concern in the research process. It is true that in an open research format, infor-
mants determine themselves, based on their own relevance criteria, which aspects of
risk experience and understanding of health and disease are in focus. This however
does not exclude the possibility that sensitive, stressful or traumatic experiences may
be brought up in the course of the interview. For the interviewees, this could mean
a danger of being confronted with these experiences again and of overemphasising
their ‘vulnerable condition at risk’ or their ‘patient role’ through the narration. We
therefore took precautionary measures to avoid additional stress for the research
participants presumably caused by the narrative interview. At the outset of the study,
thorough reflections on the balance between potential benefit and harm for study
participants were made in the context of applying for ethics approval. During the
interview, we made continuous careful considerations, weighing our curiosity as
researchers and the wish to attain as much information as possible against the fear
of undue confrontation and intrusion, and the wish to protect the interviewees from
distress. At the end of the interview, we offered our participants the opportunity to
give us a signal of stress or unpleasant feelings, using a feedback form they could
return to us in a sealed envelope. In some cases, we made a follow-up telephone call
or emailed participants when we had the impression that the interview may have left
them behind too agitated. Overall, our participants described their experience of the
interview situation as comfortable and caring; however, it could also be perceived
as a distressing situation. Some of them described it as pleasant to talk to someone
unknown who is not a family member or their physician, or they reported that it had
been interesting and helpful for them to reflect on their situation during the narrative
interview. This is in line with observations by other authors about the potential of
the narrative interview as an ‘identity-forming action or discursive production of the
self’ (Lucius-Hoene, 2002, p. 178) that may even have a healing effect (Rosenthal,
10After considering risks and benefits for the informants, as a first step, the research team developed
a guideline for the conduct of the interviews, for the process of pseudonymisation and for the
publication of the results according to the “principle of non-harm” (Hopf, 2005).
7 Re-claiming the Power of Definition 155
1995). Since there is no guarantee for this positive effect, we nevertheless directed
our efforts at avoiding stress and possible harm.
In the course of the interviews for this study, it became obvious that the topic of
family is one of the most sensitive when doing qualitative research in this clinical field.
A major question was how to ask about family without aggravating this vulnerable
condition?
In spite of various discussions and researcher self-reflection, we cannot offer a
general solution. After analysing the data, we realised that each researcher’s decision
whether to ask further questions or not and when to change the topic was based on
‘inner feeling’. The choice is based on an ethical judgement that researchers will
need to make for themselves, and preferably discuss with colleagues in the team, or
use other spaces for reflection such as intervision or research workshops.
Qualitative Research in a Medically Oriented Scientific Environment
In the process of research conceptualisation, our teams faced the challenge of two
fundamentally different approaches in the way of designing the research process. In a
medically oriented environment, operationalisation of research questions is expected
to follow a standardised approach based on predetermined definitions of risk and QoL.
This confronted us with conflicting ideas about the appropriate sampling strategy or
the suitable ways of collecting data.
As a compromise, concerning the criteria for in- and exclusion of participants, we
agreed on medically defined criteria of ‘persons at risk’ of developing psychosis or
AD.11 This decision requires a further methodological reflection on our sampling
strategy. Defining biomedical inclusion and exclusion criteria is an attempt to objec-
tify individuals’ intuitive feeling of risk and automatically excludes persons who feel
at risk without having a biomedical explanation of this feeling. This strategy should
be critically reconsidered in future studies. A possible solution is to circumvent
the strict—and temporary—medical criteria by including an additional criterion of
‘feeling at risk’. The recruiting process could take place both in cooperation with the
medical prediction centres and randomly with the help of adverts or announcements.
Concerning the operationalisation of research questions, we encountered challenges
in terms of the degree of openness and standardisation in approaching concepts of
interest such as risk or quality of life (QoL). Our studies aimed at an open, discovery-
oriented approach providing a bottom-up perspective in order to generate a definition
grounded in empirical data. In our study on psychosis, the iterative process alternating
between data collection and analysis (Palinkas, 2014) offered a fruitful ground for
several transformations related to the research setting, methodology and research
relationship between interviewer and interviewee. However, such an approach meets
resistance and requires methodological negotiation in a primarily medically oriented
research environment.
11The only individuals who can currently obtain a predictive test in clinical practice are patients
(medically) as MCI.
156 M. Lorke et al.
We also realised how different methodologies can result in divergent findings
on a seemingly consensual concept such as QoL. In our study on AD, the overall
focus of the mixed methods approach (cf. Box 1) was on the effect of risk prediction
on the QoL of persons at risk and their family members. We aimed at contrasting
the findings of the common and established standardised questionnaires on QoL,
satisfaction with/in life and well-being with the findings of the qualitative approach:
Within the narrative parts of the episodic interviews—in which we explicitly avoided
terms such as QoL, satisfaction or well-being—together with the semantic part of
the interview—in which we explicitly asked for subjective specifications of those
terms—we were able to shed light on the subjective descriptions of the semantic
field of QoL and related concepts such as well-being and risk. This can lead to
a reasonable appraisal of the individual meanings of QoL and may hence help to
strengthen the appreciation of the qualitative approach in relation to the quantitative
data. Interestingly, the analysis of the subjective definitions revealed that the concrete
expression ‘quality of life’ is mostly understood in monetary terms (“to have enough
money to life a good life”), while the expressions ‘well-being’/‘satisfaction’ might
be better terms in everyday language to represent the health-related understanding
of ‘having a good life’.
Hence, in a medically oriented scientific environment, researchers need to face
the blurred borderline between objectivism and subjectivism, general and specific,
fact and interpretation in the context of qualitative research in mental health.
Data Generation—Asking About Risk
Concerning the assumed impact of risk on people’s lives, our strategy of mitigating
harm and bias included a reserved attitude towards the label of ‘being at risk’ and
avoiding the use of this wording in the beginning phase of the interview. In both
of our studies, the medical understanding of risk is presented to our participants
during their clinical diagnostics and treatment, but the understanding of risk in both
instances differs. In order to bridge this definitional gap, we decided not to employ a
single or fixed definition of risk, but “to elicit the perspective of those being studied”
(Sofaer, 1999, p. 1105). We used conversation techniques that minimise the use of
‘objective definitions’ of risk, and the emphasis on ‘medical knowledge’. Throughout
the interviews, we regularly explored the background of the narratives (“How do
you know about that?” and “Could you explain your feelings and thoughts (in this
specific situation)?”) in order to create a space for individual frameworks of meaning,
including the verbalisation of somatic (bodily) knowledge (Samerski, 2019).
While conducting the interviews and analysing the data, we realised that even if
we agreed on a short and clear opening question, it had been slightly modified in
each interview depending on the pre-conversation and the conversation atmosphere.
This reveals on the one hand the researchers’ own personal attitude towards the label
‘being at risk of developing psychosis/AD’ and on the other hand the ethical concerns
related to the interview situation; the danger of introducing a label or a meaning of
‘risk’ that may be not relevant for the individual’s life.
7 Re-claiming the Power of Definition 157
The Interview as a Setting and Format for Data Generation on Mental
Health Risk
Our data analysis allowed for a methodological reflection on the interview as an
appropriate setting for generating meaningful information. In the context of mental
health, especially within our study on psychosis, we often meet interview-partners
who have experience with conversations that aim at generating narratives (in the
context of previous therapies or psychological conversations with professionals).
The high ability of self-reflection among the interview-partners enabled a highly
differentiated approach to the self and the disease, offering expert knowledge on
symptoms, risk and individuals’ daily struggles. From a researcher point of view,
this should be considered as an important factor which influences the type of the
collected data and poses challenges to their interpretation.
A further important task was to discover the different voices narrating the story.
Narrative interviews in the context of mental health ‘at risk’ contain a great share
of self-interpretation, narratives on psychological interpretations and external defi-
nitions. Additional data sources such as field notes and memos can be fruitful to
enrich and complete the verbal way of telling about perceptions. These additional
means of data collection require an increased awareness of the researcher’s role in
conducting the interview as well as control over the dynamics of proximity and
distance during the interview. A look into the data reveals some of the researcher’s
strategies to stay “open” (DeWalt & DeWalt, 1998) and curious, keeping their atten-
tion independent from medical background information or therapeutic experience:
emphasising empathy (“I can imagine how difficult this situation was”), personal
disclosure, appreciation (“that’s exciting”) and re-questioning one’s own question
(“this question may not be so relevant, but I am curious to know”).12
Negotiating Roles and Responsibilities in the Research Process
Our findings and memos reveal that the process of role definition during the inter-
view was an issue from the interviewees’ point of view. This became visible through
discussions on the research questions (“Do you follow a specific common thread
while asking these questions?” (PSYP01)), evaluations on the notion of representa-
tiveness of the project results (“I am wondering if what I say could be representative
for others?” (PSYP02)), thematising their own role as a research participant (“Am I
a patient, or a client, or what is the right term here?” (PSYP01)).
12An additional aspect that invites further analysis and reflection is the gender dimension of the
research. All researchers are female and of different ages. Both gender and age certainly have an
impact on the interview dynamics but due to space limitation, these aspects will not be further
discussed in this contribution.
158 M. Lorke et al.
This ‘patient-role’ became visible in different stages in the course of the inter-
view. Research participants adopted medical language not only when describing
different diagnoses and symptoms, but also when reflecting on their coping strate-
gies, everyday feelings and experiences and interactions with others. Apart from this
adoption of terminology, role definition in general was not a very obvious, but still a
constantly present issue in the interview process. We noticed interviewees switching
between the role of the patient (having experience with diagnoses and therapies), the
self-reflected and aware person (emphasising one’s own importance in the process of
managing mental health) and the knowledgeable person, “cognisant of researchers
and doctors” (highlighting one’s own position as an experienced person in commu-
nication with doctors and researchers). This helped us as researchers to minimise the
risk of reducing the interviewees to their traumatic experience, or to exclude areas or
phases of their lives that may be relevant to the research question (Loch & Rosenthal,
2002). On our part, we as researchers also took measures to minimise these risks,
such as the use of questioning techniques for in-depth exploration, in some instances
self-disclosure, scheduling sufficient time and space, re-establishing contact after
the interview (Küsters, 2009), and a process-accompanying self-reflection among
the research team.
Summary: Methodological Reflection and Research Ethics
The following questions (Box 2) are intended as a source for reflection, rather than
guidelines or rules, when planning and conducting a qualitative study on mental
health risk. The leading idea is to encourage considering the methodological deci-
sions at each stage throughout the research process in terms of their implications
for the data that will be generated. Eventually, methodological reflection on these
issues may contribute to constructively dealing with the tension between a standard-
ised biomedical and an open, bottom-up approach in a medically oriented scientific
environment.
Box 2: Questions for reflection
Ethical considerations concerning the notion of ‘vulnerability’
Sensitive topics /traumatic experiences Are there issues of responsibility or feelings of guilt related to
the condition of being at risk (e.g. in terms of the interviewee’s
behaviour, implications of his/her situation for close others, or
heredity)? If yes, what may the methodology of qualitative
enquiry imply in terms of a confrontation with these feelings
guilt? How can the researcher prepare for situations
surrounding potential feelings of guilt in conversations with
the interviewee? For example, the researcher may need to be
prepared for being asked about his or her opinion about
appropriate ways of dealing with the risk or about questions of
responsibility; or he/she may need to make a trade-off between
curiosity and the wish to protect the interviewee from potential
harm by overly intrusive questions
(continued)
7 Re-claiming the Power of Definition 159
(continued)
Qualitative research in a medically oriented environment
Research design In an interdisciplinary, medically oriented research
environment, qualitative researchers will be challenged to
make a trade-off between the demands of an open, circular
research process guided by the premises of theoretical
sampling and data saturation, and the expectations of an a
priori elaborated, standardised, and linear research procedure
usually expected in the medical field
Sampling With regard to mental health risk, careful considerations are
required concerning the operationalisation of the ‘condition at
risk’. How are risk factors defined according to the current
state of knowledge? Do medical guidelines on risk detection
differ from discourses in the media? What do people think
about their own risk? Based on our experience, we recommend
scheduling time during the study preparation for detailed
discussion with clinicians, but also with participants, about
risk factors, different risk constellations, and in- and exclusion
criteria for study participation. Recruiting interviewees could
take place both in collaboration with medical prediction
centres and using adverts or announcements
Data generation—asking about risk
Using the term ‘risk’ ‘Risk’ may have a variety of meanings and implications, not
only with respect to different mental health conditions, but
also for different people and in different socio-biographical
contexts. We therefore encourage researchers to reflect on the
implications of when and how to introduce the term risk in the
research process, including the first contact with the interview
partners and the opening question of the interview. The
choices will also depend on the recruitment process and on the
procedures of clinical prediction and risk communication (for
example, whether disclosure of the clinical high risk has
already occurred and if yes, in which way, and how long ago)
The interview as a method of data collection Researchers are encouraged to reflect on the choice of an
interview as a setting and format for data generation on mental
health risk. This is of particular importance when talking to
persons familiar with a high degree of self-reflection, for
example when experienced in psychotherapy. With regard to
research on mental health risk, different knowledge systems
come into play; these will also be reflected in the interviewees’
narratives. Different stocks of knowledge may inform their
reflections, for example normative ideas about their condition,
adopted medical language and expert knowledge, or concerns
uttered by family and friends. We therefore encourage
researchers to stay alert concerning the different voices
‘speaking’ in the interviewees’ narratives. In addition, other
methods of data collection may be considered, allowing for
non-verbal data generation
Negotiating roles and responsibilities in the research process
(continued)
160 M. Lorke et al.
(continued)
Between disorder and normality The condition of being ‘at risk’ for a mental health problem
introduces the negotiation between disorder and normality. We
argue that both the interviewee and the researcher will locate
themselves somewhere on the continuum between these two
poles. As a researcher, one needs to engage in the reflection
about how to deal with his/her own ‘mental vulnerability’, and
will be required to reconsider this position in relation to
different interview partners. This includes choices such as
‘Will it be appropriate to employ self-disclosure in support of
a trusting relationship with the interviewee?’ or ‘Which
personal memories, threats or anxieties may the interview
trigger in me as a researcher?’
Data analysis
Tools and sources for reflection When analysing data, it is important to keep in mind that
narratives generated through qualitative enquiry are the result
of a co-construction between researcher and interviewee. We
therefore encourage researchers to employ diverse tools and
sources for reflexivity, such as auto-ethnographic memos or
thick descriptions following the interview, metadata-protocols,
and discussions in the interdisciplinary research team. Herein,
researchers can use questions such as ‘What are my own
thoughts, fears, and prejudice concerning the risk in
question?’; ‘Which implications do my assumptions have for
the topics addressed in the interview, and for those neglected
or hidden?’
Conclusion: Methodologies in Support of Reclaiming Power
Qualitative methodologies are a powerful way for people experiencing mental
distress to speak for themselves. We argue that they can constitute a valid approach
to understanding people’s experiences and perspectives in mental health care as well
as in mental health research (Powell, Single, & Lloyd, 1996). In the two studies
presented in this chapter, we drew on approaches from linguistics and medical
ethnology, and we used narrative methodology and reflexivity in order to open up
definitional spaces between researchers and interviewees. A reflection on both the
content and the process of the interviews conducted during both studies allows for
some considerations concerning the power of definition. Constantly taking a step
back and questioning our strategies and interpretations before, during and after the
interviews provided the opportunity for re-defining concepts related to the notion of
being ‘at risk’ for psychosis or dementia, such as vulnerability, QoL, and risk itself.
The narrative and episodic interviews proved to be a fruitful source for the discursive
generation of definitions, unfolding the multi-faceted understandings of health. It
became evident that risk, beyond ‘objective’ scores and percentages, can have diver-
gent meanings to different persons and in the context of different health conditions
such as psychosis or Alzheimer’s dementia. Risk is a mediator at the border between
order and disorder; beyond being perceived as a threat, risk can also be a regulator
7 Re-claiming the Power of Definition 161
in the process of negotiating normality. Persons being confronted with a health risk
can (re)gain agency by either interpreting their risk as a source for self-awareness
and self-care, or by trying to restore order and normality through their narrations.
Methodologically, our studies revealed particular opportunities but also challenges
concerning the realisation of a qualitative approach in the context of a medically
oriented environment. For example, our sampling strategies were shaped by the
medically defined risk factors for psychosis and dementia, and methodological nego-
tiations with our clinical partners were needed to convey the benefit of a discovery-
oriented—rather than a standardised—approach to concepts such as risk or QoL. We
also reflected on the interview as an appropriate format of generating meaningful
knowledge, particularly among persons who are familiar with a high level of self-
reflection, or with a view to different ‘voices’ speaking in the narratives, such as
personal interpretations, but also knowledge and beliefs adopted from physicians,
family, or the media. In the future, an even more open-ended and spirited approach
to sampling and data collection may be worthwhile, for example, by including self-
definitions of ‘at-risk’ states, or by employing pre-discursive forms of data collection
such as in arts-based research.
In terms of disciplinary approaches, instead of being restricted even more by
biomedical thinking, dementia and mental health research ought to refocus on
a variety of disciplines such as sociology, anthropology, philosophy, or politics
(Timimi, 2014) in order to accommodate a broader understanding of the person and
their well-being. Biomedical, psychosocial, and cultural models of mental health
should be appropriately balanced in order to do justice to a holistic perspective on
mental health (Puras, 2017). In particular, user-lead research has the potential to
overcome power asymmetries characteristic of biomedical study designs, and to be
able to ‘cut to the heart of issues that are important to service users themselves’
(Pitt, Kilbride, Nothard, Welford, & Morrison, 2007, p. 60). Stories and storytelling
can be considered as the heart of qualitative methodology, particularly in narrative,
linguistic and ethnographic approaches. As a particular example, auto-ethnography
can be a fruitful methodology, capable of generating dense accounts of a person’s
lived experiences by connecting these to cultural process and understanding (Liggins,
Kearns, & Adams, 2013; see also Willig in this book).
In conclusion, when awarding people the opportunity to speak for themselves in
the context of mental health research, their personal accounts and narratives can help
challenge existing social constructions of their conditions. This can also allow for
new perspectives on the experiences of people living with mental distress (Zeilig,
2014; Zimmermann, 2017). The narrative approach offers the potential to (re)arrange
life events and experiences, and to attribute subjective meaning to their condition,
which can be an important resource for coping with the at-risk state. Moreover,
narratives allow for accommodating different forms and types of health knowledge,
including intuition and somatic (bodily) knowledge. From a sociology of knowledge
perspective, qualitative research can therefore offer the opportunity to contribute to
new realities of mental health in terms of scientific knowledge production, diagnostics
and treatment, as well as personal and public perception. Eventually, qualitative
162 M. Lorke et al.
approaches to data collection, analysis, and interpretation open up spaces for re-
claiming power concerning the experience, the definition, and the appraisal of mental
health.
Acknowledgements The research described in this chapter received funding by the Robert Bosch
Foundation (“Health literacy of persons at risk from information to action (RisKomp)”; grant
number 11.5.A402.0002.0) and by the Federal Ministry of Education and Research—BMBF as part
of the Network of European Funding for Neuroscience Research—ERA-NET NEURON (“Ethical
and Legal Framework for Predictive Diagnosis of Alzheimer’s Disease: Quality of Life of Individ-
uals at Risk and their Close Others (PreDADQoL); funding number: 01GP1624)”. The sponsors
did not have any influence on study initiation, conducting and reporting.
Both joint projects were conducted at the Cologne Center for Ethics, Rights, Economics, and
Social Sciences of Health (ceres) under the leadership of Principal Investigator Prof. Dr. med.
Christiane Woopen.
Weare obliged to our interviewees for their time, their commitment and their openness in sharing
their narratives with us. We would like to thank our clinical partners for the fruitful collaboration in
the course of our empirical work; we are particularly grateful to Frank Jessen, Stephan Ruhrmann and
Kai Vogeley for endorsing our project, and to Theresa Haidl, Mauro Seves, and Ayda Rostamzadeh
for their relentless support in designing the study, defining in- and exclusion criteria, and recruiting
our interview partners. Special thanks are due to Laura Harzheim who is part of the RisKomp
project team; without her contribution, this book chapter would not have been possible. We would
like to express our special gratitude to Maria Borcsa and Carla Willig for their careful editing; their
constructive comments and wise suggestions greatly helped us to refine our manuscript.
Literature
Albert, M. S., DeKosky S. T., Dickson, D., Dubois, B., Feldman, H. H., Fox, N. C., Phelps, C.
H. (2011). The diagnosis of mild cognitive impairment due to Alzheimer’s disease: Recommen-
dations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic
guidelines for Alzheimer’s disease. Alzheimers Dementia, 7(3), 270–279. http://doi.org/10.1016/
j.jalz.2011.03.008.
Aronowitz, R. A. (2009). The converged experience of risk and disease. The Milbank Quarterly,
87(2), 417–442. https://doi.org/10.1111/j.1468-0009.2009.00563.x.
Bearden, C. E., & Forsyth, J. K. (2018). The many roads to psychosis: Recent advances in under-
standing risk and mechanisms. F1000Research, 7 (F1000 Faculty Rev), 1883. https://doi.org/10.
12688/f1000research.16574.1.
Bentz, M. Binnenhei, M., Coussios, G., Gruden, J., Imo W., Korte, L., Stier, S. (2016). Von
der Pathologie zum Patienten: Optimierung von Wissenstransfer und Verstehenssicherung in der
medizinischen Kommunikation. Sprache und Interaktion, 72, 1–43.
Berger, P. L., & Luckmann, T. (1966). The social construction of reality: A treatise in the sociology
of knowledge. Doubleday: New York.
Birkner, K. (2006). Subjektive Krankheitstheorien im Gespräch. Gesprächsforschung, 7, 152–183.
Breuer, F., Muckel, P., & Dieris, B. (2019). Reflexive grounded theory: Eine Einführung für die
Forschungspraxis (4th ed.). Wiesbaden: Springer VS.
Byrne, R., & Morrison, A. P. (2010). Young people at risk of psychosis: A user-led exploration of
interpersonal relationships and communication of psychological difficulties. Early Intervention
in Psychiatry, 4(2), 162–168. https://doi.org/10.1111/j.1751-7893.2010.00171.x.
7 Re-claiming the Power of Definition 163
Clarke, A. E., Shim, J. K., Mamo, L., Fosket, J. R., & Fishman, J. R. (2003). Biomedicalization:
technoscientific transformations of health, illness, and U.S. biomedicine. American Sociological
Review, 68(2), 161–194. https://doi.org/10.2307/1519765.
Denzin, N. (1970). The research act in sociology. London: Butterworth.
Deppermann, A. (2008). Gespräche analysieren: Eine Einführung (5th ed.). Wiesbaden: Springer
VS.
Deppermann, A. (2013). Interview als text vs. interview als interaktion. FQS Forum Qualitative
Sozialforschung, 14(3), 1–36.
DeWalt, K. M., & DeWalt, B. R. (1998). Participant observation. In B. H. Russell (Ed.), Handbook
of methods in cultural anthropology (pp. 259–300). Walnut Creek: AltaMira Press.
Ermine, W., Sinclair, R., & Jeffery, B. (2004). The ethics of research involving indigenous peoples:
Report of the indigenous People’s Health Research Centre to the Interagency Advisory Panel on
Research Ethics. Saskatoon (SK): Indigenous People’s Health Research Centre.
Etchegary,H., Miller, F., deLaat, S., Wilson, B., Carroll, J., & Cappelli, M. (2009). Decision-making
about inherited cancer risk: Exploring dimensions of genetic responsibility. Journal of genetic
counseling, 18(3), 252–264. https://doi.org/10.1007/s10897-009-9218-z.
Fleck, L. (1979). Genesis and development of a scientific fact. Chicago: University of Chicago
Press.
Flemming, I. M. (2010). Ethnography and ethnology. In H. J. Birx (Ed.), 21st century anthropology:
A reference handbook. Thousand Oaks: Sage.
Flick, U. (1997). The episodic interview: Small scale narratives as approach to relevant experi-
ences (Discussion Papers—Qualitative Series). http://docshare01.docshare.tips/files/24191/241
911951.pdf.
Frances, A. (2014). Normal. Gegen die Inflation psychiatrischer Diagnosen. Köln: DuMont.
Fusar-Poli, P. (2017). The clinical high-risk state for psychosis (CHR-P), Version II. Schizophrenia
Bulletin, 43(1), 44–47. https://doi.org/10.1093/schbul/sbw158.
Geertz, C. (1973). Thick description: Towards an interpretive theory of culture. In C. Geertz (Ed.),
The interpretation of cultures (pp. 3–32). New York: Basic Books.
Gigerenzer, G., Gaissmaier, W., Kurz-Milcke, E., Schwartz, L. M., & Woloshin, S. (2007). Helping
doctors and patients make sense of health statistics. Psychological Science in the Public Interest,
8(2), 53–96. https://doi.org/10.1111/j.1539-6053.2008.00033.x.
Gillespie, C. (2012). The experience of risk as ‘measured vulnerability’: Health screening and lay
uses of numerical risk. Sociology of Health and Illness, 34(2), 194–207. https://doi.org/10.1111/
j.1467-9566.2011.01381.x.
Goodenough, W. H. (1956). Residence rules. Southwestern Journal of Anthropology, 12(1), 22–37.
Groleau, D., Young, A., & Kirmayer, J. (2006). The McGill illness narrative interview (MINI):
An interview schedule to elicit meanings and modes of reasoning related to illness experience.
Transcultural Psychiatry, 43(4), 671–691. https://doi.org/10.1177/1363461506070796.
Gronemeyer, R. (2013). Das 4. Lebensalter. Demenz ist keine Krankheit. München: Pattloch.
Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough? Field Methods,
18(1), 59–82. https://doi.org/10.1177/1525822x05279903.
Hallowell, N. (1999). Doing the right thing: Genetic risk and responsibility. Sociology of Health &
Illness, 21(5), 597–621.
Holmberg, C., Waters, E. A., Whitehouse, K., Daly, M., & McCaskill-Stevens, W. (2015). My
lived experiences are more important than your probabilities: The role of individualized risk
estimates for decision making about participation in the study of Tamoxifen and Raloxifene
(STAR). Medical Decision Making: An International Journal of the Society for Medical Decision
Making, 35(8), 1010–1022. https://doi.org/10.1177/0272989X15594382.
Hopf, C. (2005). Forschungsethik und qualitative Forschung. In U. Flick, E. von Kardorff, & I.
Steinke (Eds.), Qualitative Forschung. Ein Handbuch (pp. 589–599). Reinbek bei Hamburg:
Rowohlt.
Imo, W. (2017). Trösten: Eine sprachliche Praktik in der Medizin. Muttersprache, 3(17), 197–225.
164 M. Lorke et al.
Jack, C. R., Bennett, D. A., Blennkow, K., Carrillo, M. C., Dunn, B., Haeberlein, S. B., Sperling,
R. (2018). NIA-AA research framework: Toward a biological definition of Alzheimer’s disease.
Alzheimer’s Dementia, 14(4), 535–562. http://doi.org/10.1016/j.jalz.2018.02.018.
Jessen, F., Amariglio, R. E., van Boxtel, M., Breteler, M., Ceccaldi, M., Chételat, G., Wagner,
M. (2014). A conceptual framework for research on subjective cognitive decline in preclinical
Alzheimer’s disease. Alzheimer’s Dementia, 10(6), 844–852. http://doi.org/10.1016/j.jalz.2014.
01.001.
Keller, R. (2011). The sociology of knowledge approach to discourse (SKAD). Human Studies, 34,
43–65.
Küsters, I. (2009). Narrative Interviews: Grundlagen und Anwendungen (2nd ed.). Wiesbaden:
Springer VS.
Largent, E. A., & Karlawish, J. (2019). Preclinical Alzheimer disease and the dawn of the pre-
caregiver. JAMA Neurology, 76 (6), 631–632. https://doi.org/10.1001/jamaneurol.2019.0165.
Liggins, J., Kearns, R. A., & Adams, P. J. (2013). Using autoethnography to reclaim the ‘place
of healing’ in mental health care. Social Science and Medicine, 91, 105–109. https://doi.org/10.
1016/j.socscimed.2012.06.013.
Livingston, G., Sommerlad, A., Orgeta, V., Costafreda, S. G., Huntley, J., Ames, D., Mukadam.
N. (2017). Dementia prevention, intervention, and care. Lancet,390(10113), 2673–2734. http://
doi.org/10.1016/S0140-6736(17)31363-6.
Loch, U., & Rosenthal, G. (2002). Das narrative interview. In D. Schaeffer & G. Müller-Mundt
(Eds.), Qualitative Gesundheits- und Pflegeforschung (pp. 221–232). Bern u. a.: Hans Huber.
Lucius-Hoene, G. (2002). Narrative Bewältigung von Krankheit und Coping-Forschung:
Psychotherapie und Sozialwissenschaften. Zeitschrift für qualitative Forschung, 4(3), 166–203.
Mason, M. (2010). Sample size and saturation in PhD studies using qualitative interviews [63
paragraphs]. Forum: Qualitative Social Research, 11(3), Art. 8. https://doi.org/10.17169/fqs-11.
3.1428.
Mitchell, A. J., & Shiri-Feshki, M. (2009). Rate of progression of mild cognitive impairment to
dementia: Meta-analysis of 41 robust inception cohort studies. Acta Psychiatrica Scandinavica,
119(4), 252–265. https://doi.org/10.1111/j.1600-0447.2008.01326.x.
Nohl, A. (2017). Interview und Dokumentarische Methode, 3–13. https://doi.org/10.1007/978-3-
658-16080-7_1.
Palinkas, L. A. (2014). Qualitative and mixed methods in mental health services and implementation
research. Journal of Clinical Child & Adolescent Psychology, 43(6), 851–861. https://doi.org/10.
1080/15374416.2014.910791.
Park, C. L., & Folkman, S. (1997). Meaning in the context of stress and coping. Review of General
Psychology, 30, 115–144.
Pellegrino, E. D. (1992). Intersections of western biomedical ethics and world culture: Problematic
and possibility. Cambridge Quarterly of Healthcare Ethics, 1(3), 191–196. https://doi.org/10.
1017/s0963180100000360.
Pitt, L., Kilbride, M., Nothard, S., Welford, M., & Morrison, A. P. (2007). Researching recovery
from psychosis: A user-led project. Psychiatric Bulletin, 31(2), 55–60. https://doi.org/10.1192/
pb.bp.105.008532.
Powell, R. A., Single, H. M., & Lloyd, K. R. (1996). Focus groups in mental health research:
Enhancing the validity of user and provider questionnaires. International Journal of Social
Psychiatry, 42(3), 193–206.
Puras, P. (2017). Human rights and the practice of medicine. Public Health Reviews, 38(9). https://
doi.org/10.1186/s40985-017-0054-7.
Reichertz, J. (2015). The meaning of researchers’ subjectivity. Forum Qualitative Sozial-
forschung/Forum: Qualitative Social Research,16(3). Article number 33. https://doi.org/10.
17169/fqs-16.3.2461.
Rosenthal, G. (1995). Erlebte und erzählte Lebensgeschichte. Gestalt und Struktur biographischer
Selbstbeschreibungen. Frankfurt/Main: Campus.
7 Re-claiming the Power of Definition 165
Rostamzadeh, A., Schwegler, C., Gil, S., Romotzky, V., Ortega, G., Canabate, P., Woopen, C. (in
press). Biomarker-based risk prediction of Alzheimer’s dementia in MCI: Psychosocial, ethical
and legal aspects—the PreDADQoL project. JAD Journal of Alzheimer’s Disease, 2021.
Sachs-Jeantet, C., Sagasti, F. R., & Salomon, J. J. (1994). The uncertain quest: Science, technology,
and development. Tokyo: United Nations University Press.
Samerski, S. (2013). Professioneller Entscheidungsunterricht: Vom Klienten zum mündigen
Entscheider. Leviathan, 41(1), 144–163. https://doi.org/10.5771/0340-0425-2013-1-144.
Samerski, S. (2019). Health literacy as a social practice: Social and empirical dimensions of knowl-
edge on health and healthcare. Social Science and Medicine, 226, 1–8. https://doi.org/10.1016/j.
socscimed.2019.02.024.
Schaarschmidt, T. (2018, January 2). Ich bin nicht verrückt, ich bin Revoluzzer [online news-
paper article]. Retrieved from https://www.zeit.de/wissen/gesundheit/2018-01/antipsychiatrie-
psychiatrien-psychologie-patienten. Accessed 14 Apr 2019.
Schultze-Lutter, F., Schmidt, S. J., & Theodoridou, A. (2018). Psychopathology: A precision tool in
need of re-sharpening. Frontiers in Psychiatry, 9(446). https://doi.org/10.3389/fpsyt.2018.00446.
Schütze, F. (1983). Biographieforschung und narratives Interview. Neue Praxis, 3(13), 283–293.
Schwegler, C., Rostamzadeh, A., Jessen, F., Boada, M., & Woopen, C. (2017). Expectations of
patients with MCI and their caregivers towards predictive diagnosis of AD: A qualitative approach.
Alzheimer’s and Dementia, 13(7), 538. https://doi.org/10.1016/j.jalz.2017.06.641.
Selting, M., Auer, P., Barth-Weingarten, D., Bergmann,J. R., Bergmann, P., Birkner,K., Hartung,
M. (2009). Gesprächsanalytisches Transkriptionssystem 2 (GAT 2). Ge-sprächsforschung
–Online-Zeitschrift zur verbalen Interaktion, 10, 353–402.
Smith, L. T. (2012). Decolonizing methodologies: Research and indigenous peoples (2nd ed.).
London and New York: Zed Books.
Sofaer, S. (1999). Qualitative methods: What are they and why use them? Health Services Research,
34(52), 1101–1118.
Sykes, S., Wills, J., Rowlands, G., & Popple, K. (2013). Understanding critical health literacy: A
concept analysis. BMC Public Health, 13(150). https://doi.org/10.1186/1471-2458-13-150.
Timimi, S. (2014). No more psychiatric labels: Why formal psychiatric diagnostic systems should
be abolished. International Journal of Clinical and Health Psychology, 14(3), 208–215. https://
doi.org/10.1016/j.ijchp.2014.03.004.
Vos, S. J. B., Verhey, F., Frölich, L., Kornhuber, J., Wiltfang, J., Maier, W., Visser, P. J. (2015).
Prevalence and prognosis of Alzheimer’s disease at the mild cognitive impairment stage. Brain,
138(5), 1327–1338. http://doi.org/10.1093/brain/awv029.
Wakefield, J. C. (2012). Der Begriff der psychischen Störung: An der Grenze zwischen biologischen
Tatsachen und gesellschaftlichen Werten. In T. Schramme (Ed.), Krankheitstheorien.Berlin:
Suhrkamp.
Willig, C. (2012). Perspectives on the epistemological bases for qualitative research. In H.
Cooper (Ed.), The handbook of research methods in psychology. Washington, DC: American
Psychological Association.
Woopen, C. (2014). Die Bedeutung von Lebensqualität aus ethischer Perspektive [The significance
of quality of life an ethical approach]. Zeitschrift für Evidenz, Fortbildung und Qualität im
Gesundheitswesen, 108(2–3), 140–145. https://doi.org/10.1016/j.zefq.2014.03.002.
Zeilig, H. (2014). Dementia as a cultural metaphor. The Gerontologist, 54(2), 258–267. https://doi.
org/10.1093/geront/gns203.
Zimmermann, M. (2017). Alzheimer’s disease metaphors as mirror and lens to the stigma of
dementia. Literature and Medicine, 35(1), 71–97. https://doi.org/10.1353/lm.2017.0003.
... This approach follows the principle of narrative interviews, starting the conversation with an open introductory question, but sharpening its focus by context-specific in-depth questions (incorporated in the topic guide), pre-defined by the researcher alongside the subject of interest [27]. The interviews started with a question about the first confrontation with being at risk of developing a certain disease 5 [28]. With reference to the interviewees' narratives, in-depth questions were asked on access, understanding, appraisal and application of risk-related health information. ...
... At the outset of the interview, all participants signed a written consent form.5 More detailed information on strategies to minimise potential distress for participants, including a reflection on methodological and ethical issues in qualitative research on health risks, can be found in[28].6 An appropriate description of the body-maps would be beyond the scope of this article. ...
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