ALEXITHYMIA IN BORDERLINE PERSONALITY PATHOLOGY From theory to a biosensor application Youri Derks
ALEXITHYMIA IN BORDERLINE PERSONALITY PATHOLOGY From theory to a biosensor application Youri Petrus Marinus Johannes Derks
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ALEXITHYMIA IN BORDERLINE PERSONALITY PATHOLOGY From theory to a biosensor application PROEFSCHRIFT ter verkrijging van de graad van doctor aan de Universiteit Twente, op gezag van de rector magnificus, prof. dr. ir. A. Veldkamp, volgens besluit van het College voor Promoties in het openbaar te verdedigen op donderdag 14 juli 2022 om 16.45 uur door Youri Petrus Marinus Johannes Derks geboren op 11 januari 1982 in Batenburg, Nederland
Dit proefschrift is goedgekeurd door: Promotoren prof. dr. E.T. Bohlmeijer prof. dr. G.J. Westerhof Co-promotor dr. M.L. Noordzij
PROMOTIECOMMISSIE: Voorzitter / secretaris: prof.dr. T. Bondarouk Universiteit Twente Promotoren: prof.dr. E.T. Bohlmeijer Universiteit Twente prof.dr. G.J. Westerhof Universiteit Twente Co-promotor: dr. M.L. Noordzij Universiteit Twente Leden: prof. dr. R.D. Lane University of Arizona prof. dr. A. Popma Amsterdam UMC prof.dr. D.K.J. Heylen Universiteit Twente prof.dr.ir. G.D.S. Ludden Universiteit Twente dr. S.M. Kelders Universiteit Twente
CONTENTS Chapter 1 General Introduction 9 Part I (Trans)theoretical account of alexithymia Chapter 2 The body as a (muffled) sound box for emotion: 37 How research in alexithymia has ‘incorporated’ the body Part II Relationship between alexithymia and borderline personality pathology Chapter 3 A meta-analysis on the association between emotional 79 awareness and borderline personality pathology Chapter 4 No words, no actions: Exploring the mediating role of 113 alexithymia in borderline personality pathology Part III Development of a biosensor-informed wearable smartwatch / smartphone application to advance treatment of alexithymia and low emotional awareness Chapter 5 mHealth in mental health: How to efficiently and 149 scientifically create an ambulatory biofeedback e-coaching app for patients with borderline personality disorder Chapter 6 Development of an ambulatory biofeedback app to 187 enhance emotional awareness in patients with borderline personality disorder: Multicycle usability testing study Chapter 7 Summary and General Discussion 221 Appendices Samenvatting (Dutch summary) 259 Dankwoord (Acknowledgement) 267 Publications and presentations 272 About the author 274
Chapter 1 General introduction
Chapter 1 10 1. Introduction This dissertation is about something that applies to us all. At the same time, it is about a select subgroup of people with a select problem – and the development of an even more select innovative intervention. So, what is it about? At the broadest, this dissertation is about the awareness and recognition of one’s own emotions. Somewhat more specific, it is about what it implies when the ability to be aware of and recognise emotions is hampered - in the even more specific situation that you happen to be a patient in therapy struggling with borderline personality pathology (BPP). For patients with BPP, hampered emotional awareness can aggravate their problems, while it simultaneously poses an additional challenge in getting the most out of their treatment - as treatment generally requires a certain awareness of emotions to be effective. Luckily, this dissertation is also about the development a potentially potent, technology driven, new intervention that could be of benefit to them. The dissertation contains 7 chapters. This first chapter provides a general introduction to the topics covered in the rest of the thesis. Starting with the work on emotion by William James in section 1, the reader is then introduced in section 2 to emotion regulation as the subsequent focus for therapy and research and shows how progressive insight continued to redirect clinicians and emotion researchers ‘back’ to the basic prerequisite of emotion regulation, namely emotional awareness. Section 3 introduces borderline personality disorder as one of the mental disorders most in need of ameliorating emotion regulation – and thus emotional awareness. Section 4 then taps into the topic of alexithymia, a personality construct characterised by a notably low level of emotional awareness. Sections 5 and 6 discuss the role of psychophysiology of emotion and thus in a way return to James’ theory on the embodiment of emotion. Section 5 focuses on the matter of ‘response coherence’: the degree to which the physiological, behavioural and experiential elements of an emotional response do - or do not – cohere. Section 6 goes into the concept of interoceptive awareness as a ‘bonding agent’ between bodily sensations and felt emotion, and how it is generally found missing in persons with BPP and/or alexithymia. Section 7 discusses the potential of present-day mobile health and biosensing technology in delivering a new way to help patients improve on their emotional awareness. Section 8 discusses some of the gaps and risks bound to the use technology in mental health care. Section 9 presents the aims and outline of this dissertation.
1 General Introduction 11 1.1 Emotion as the ‘Alpha’ and ‘Omega’ of psychology Emotions shape and colour our world [1, 2]. They are ubiquitous in all areas of human life: in social relationships, music, arts, sports, religion and spirituality, work, cooking, birth and demise, videogames, social media, movies… One could argue that for us humans, recognising and understanding – and thus dealing with - emotion is apparently something so obvious, it is almost impossible not to do. Of course, we have our rationality to work with, but we basically ‘breathe’ emotion as we live our lives . And so, both on a personal level and for psychological science, the importance of emotion in the human psyche is hard to be overstated. In fact, one could argue that part of the roots of the field of academic psychology lie in the study of emotion. Just five years after Wundt started the world’s first psychology lab in 1879 at the University of Leipzig – generally considered the official start of psychology as a separate and distinct scientific discipline - American soiled William James (1884) published his landmark article ‘What is an emotion?’ . With it, he not only presented a first thorough, compelling work on the perceived origins and workings of emotion in the human species, but simultaneously brought into existence one of the most influential academic traditions in psychology in which this dissertation is also rooted. For James, emotion is an embodied experience of an active self  in which ‘’… the whole organism may be called a sounding-board" . Although his theory on emotion and emotional consciousness was unfortunately ‘grossly’ misunderstood by many researchers after him [5, 7], the unmistakable central tenet of James’ theory was the specific role the body and bodily experience had in emotion: “My theory... is that the bodily changes follow directly the perception of the exciting fact, and that our feeling of the same changes as they occur IS the emotion. Commonsense says we lose our fortune, are sorry and weep; we meet a bear, are frightened and run; we are insulted by a rival, are angry and strike. The hypothesis here to be defended says that this order of sequence is incorrect, that the one mental state is not immediately induced by the other, that the bodily manifestations must first be interposed between, and that the more rational statement is that we feel sorry because we cry, angry because we strike, afraid because we tremble, and not that we cry, strike, or tremble, because we are sorry, angry, or fearful, as the case may be. Without the bodily states following on the perception, the latter would be purely cognitive in form, pale, colourless, destitute of emotional warmth. We might then see the bear, and judge it best to run, receive the insult and deem it right to strike, but we could not actually feel afraid or angry. (pp. 189-190)”  James’ theory holds that the sensation of bodily changes is a necessary condition of emotion, not that ‘the subjective experience of emotion is neither more nor less than the awareness of our own bodily changes in the presence of certain arousing stimuli’ . In addition, James regarded emotions as adaptive behavioural and physiological
Chapter 1 12 response tendencies that are called forth directly by evolutionarily significant situations . Nowadays, backed by convincing evidence from affective neuroscience - although perhaps not all agreeing with all of James’ ideas, few researchers and clinicians doubt the significance of the body in emotion. Today’s discourse on emotion is dominated by the compelling works of authors, such as Barrett , LeDoux , Damasio , Van der Kolk , Lane , and Ogden , who all place great emphasis on the role of the body. However, some 137 years later, we still fall short of an answer to this question that propelled much of the field of academic psychology into existence. We are again aware of the facts that James was over a century ago: bodily sensations are not the ‘whole experience’; yet they are part of what makes the whole experience emotional [11-13, 15-17]. The bodily sensations, "perceived, like the original object, in many portions of the cortex, combine with it in consciousness and transform it from an object-simply apprehended into an object-emotionally-felt" . The bodily processes combine with the perception of the object to produce the emotion. In this respect, James's theory resembles Schachter and Singer's (1962) idea that emotion is a combination of cognitive and physiological responses . Still, even though emotion and its bodily basis have had a real resuscitation in both research and the clinical field in past decades – there still is no generally accepted definition of ‘what is an emotion’. What is agreed upon is that ‘emotion’ refers to a collection of psychological states that include subjective experience, expressive behaviour (e.g., facial, bodily, verbal), and peripheral physiological responses (e.g., heart rate, respiration). It is also widely agreed that emotions are a central feature in any psychological model of the human mind. Beyond these two points of agreement, however, almost everything else seems to be subject to debate . The struggle to really understand this omnipresent, yet hard to capture phenomenon that is emotion is not merely an academic one. In contrast, as stated above, psychological first-person experience is constructed from emotions on a day-to-day basis. Many psychiatric disorders are said to be characterized by problems with emotion and emotion regulation; estimates range from 40% to more than 75% . As emotions are hard to be directly controlled by mere reason and will, and yet have such an impact on our doings, it is understandable that many efforts have beenmade by physicians, psychotherapists, psychiatrists, coaches, and other health professionals to help us ‘manage’, or ‘regulate’ this powerful, potentially disrupting internal source.
1 General Introduction 13 1.2 Emotion in psychotherapy: From Omega back to Alpha? In human history, emotions have long been regarded as nonspecific, disruptive activation states . Over time, there came a shift in focus: from trying to understand ‘what is an emotion’, researchers and clinicians shifted their attention to the topic of how to manage – or ‘regulate’ – emotions. In part, this shift seemed an effect of researchers oversimplifying James’ ideas in such a way that he was misread as saying "Emotion is (nothing but) bodily sensations" or even "Emotion is (nothing but) autonomic sensations." Although these simplified versions of James's ideas initially generated an enormous amount of research (e.g., by the likes of Cannon, Bard, Schacter and Singer, et cetera), later on it seriously impeded the study of emotion. After the 1940’s, research on emotion had practically disappeared . Perhaps, an implicit assumption that also fuelled the change of focus was that the notion that in order to come to a better understanding of ‘what is an emotion’, both on an individual level and academically, one must first be able to ‘domesticate’ this ‘wild entity’. The psychoanalytic tradition is one important precursor to the contemporary study of emotion regulation . Since the early days of psychoanalysis, the resolving of disturbing emotions by ‘working them through’ and releasing them - either directly by catharsis or indirectly by psychological displacement or sublimination has been common practice for decades [20-24]. Next, although initially ‘marginalised’, and perhaps mainly admitted as the main target object to regulate and bring under conscious control, emotions have also acquired a central spot in many to most strands of cognitive-behavioral therapy (CBT) . In the tradition of person-centred therapy, emotion has had a prominent role from the outset . Past decades have witnessed a steady increase of treatments, most (at least in part) stemming from one of these three therapeutic traditions, many the result of new ideas and insights originating from a mixture of sources. What they all again have in common, is a clear focus on learning how to regulate emotions. Some perhaps even more than others, contemporary treatments as Emotion-Focused Therapy (EFT, person-centred/process-experiential, Greenberg, [2, 27]), Mentalization Based Treatment (MBT, psychodynamic, Fonagy and Bateman [28-30]), and Dialectical Behavioral Treatment (DBT, CBT, Linehan [31-33]), Schema Focused Therapy (SFT, CBT/integrative, Young ), or Systems Training for Emotional Predictability and Problem Solving (STEPPS, CBT, Blum ) all place great emphasis on how important managing our emotions is for our wellbeing. In this transition from ‘understanding emotion’ to ‘regulating emotion’, academia followed clinical practice from some noticeable distance: until the early 1990s, just 4 publications contained the phrase “emotion regulation”. The pace was picked
Chapter 1 14 quickly from that point, however. In 1995, there were already 671 publications that contained the phrase “emotion regulation” . In April 2021, a quick search on PsycINFO yields no less than 18,148(!) hits on publications containing the phrase. Although defining what emotion regulation exactly entails has also proven a daunting task, the renowned emotion researcher James Gross has put forward a definition that is generally accepted throughout the field. According to Gross : “Emotion regulation refers to the processes by which individuals influence which emotions they have, when they have them, and how they experience and express these emotions. Emotion regulatory processes may be automatic or controlled, conscious or unconscious, and may have their effects at one or more points in the emotion generative process.” According to Gross, as well as other contemporary researchers, emotional awareness constitutes one of the main factors of emotion regulation [18, 36-38]. With the inclusion of ‘awareness’ of the emotion as part of the regulation process, in a way we have basically returned to ‘square one’. Apparently, if we - both on an individual and academic level - want to know what an emotion is, we need to be able to regulate the emotion so we can investigate it. However, in order to regulate our emotions, we first need to be aware of them. Awareness of emotions proves to be a powerful support for adaptive emotion regulation . Although emotion regulation may be either explicit or implicit, emotional awareness plays a crucial role as it enhances both the range of available strategies and the flexibility with which one uses them [19, 36, 40-42]. Without emotional awareness, it is simply much more difficult to engage sophisticated emotion-regulation strategies, and strategies that are available are expected to be much less effective [18, 19]. 1.3 Emotional awareness, emotion regulation and borderline personality pathology Both problems of emotion regulation and awareness are highly prevalent in psychopathology. The psychological disorder most infamous for being associated with severe problems in emotion regulation is probably borderline personality disorder (BPD). Patients with the disorder and the people surrounding them can usually attest that BPD impacts all domains of life. BPD is characterized by a pervasive pattern of unstable relations, a distorted self-image, and - as mentioned - profound difficulties in regulation of one’s emotions [43-45]. Self-harming behaviours are common [46-48]. As with many mental health disorders, BPD is a very heterogeneous category with patients varying in severity of the disorder, their personality profiles, issues of co-morbidity, age and so on . Contemporary clinical
1 General Introduction 15 theories on borderline personality pathology (BPP) assume that a lack of emotional awareness accounts for much of the emotional dysregulation in BPP . Although not unique to the disorder, a lack of emotional awareness is reported to occur in a heightened degree [47, 50-55]. Patients with BPD seem to have particularly less focus on the level of emotional arousal, which impedes the process of identifying and labelling of emotions . This hampers emotional expression and effective use of problem-solving strategies, which in turn leads to a persistence and most likely an increase of emotional tension. Self-harm can then result as a means to alleviate this tension [47, 56-59]. Researchers as McMain and Links  suggest that “the abilities to identify, describe and fully experience emotions develop over the course of treatment for BPD and are associated with successful treatment outcome” and Farrell and Shaw even go as far as to state that increasing emotional awareness in patients with BPD is no less than “… an important prerequisite to the effective use of cognitive and behavioral interventions” . So according to them, without emotional awareness, (cognitive behavioral) treatment will have little effect at all. 1.4 Alexithymia as a marker of a severe lack of emotional awareness A profound lack of emotional awareness is considered to be the hallmark criterion of a phenomenon called ‘alexithymia’ [60-70]. Official first use of the term was by Sifneos in 1972, who named the condition “alexithymia” from his native Greek meaning “lack of words for emotion” [71, 72]. The term ‘alexithymia’ refers to a personality construct based on a cluster of cognitive characteristics observed initially among patients with classic psychosomatic diseases and later among patients with a broad range of medical and psychiatric disorders , for instance psychosomatic disorders , PTSD , and eating disorders [76-78]. And, as clinicians as Farrell and Shaw and others point out: BPD . The term originated from clinical practice. The term ‘alexithymia’ was first used to define outcomes of a series of clinical observations and interviews of patients with certain somatic disorders. These patients, examined by young psychiatrists Peter Sifneos and John Nemiah, displayed difficulty identifying feelings and distinguishing between feelings and the bodily sensations associated with emotional arousal; difficulty finding words to describe feelings to others; constricted fantasizing and other imaginal activity; and an externally oriented style of thinking [16, 79-81]. Please note: people with alexithymia in general1 do respond to emotional triggers 1 At least ‘type II’, if considering proposed – but disputed – subtypes of alexithymia. For further information on the types of alexithymia, see for instance (at least type II, if considering proposed – but disputed – subtypes of alexithymia. For further information on the types of alexithymia, see for instance 73. Bagby, R.M., et al., An evaluation of
Chapter 1 16 physiologically, and to a certain extent, behaviourally. What lacks to them is the experience of the emotion—the feeling [11, 84, 85]. The groundwork for the alexithymia construct was laid in the years before however - during the late 1940’s to early 1970’s, when a broader movement within psychodynamic thinking was taking place from thinking about unconscious conflicts and blocking of affects to a focus on developmental deficits . The deficit oriented, phenomenological description by Sifneos has been the starting point of a vivid line of research that has been expanding and developing ever since. Over the years, attempts have been made to increase understanding and to refine, reform, and expand the concept of alexithymia. 1.5 The connection between physiology, behaviour and felt emotion: a matter of response coherence A central postulate of many emotion theories is that emotions involve coordinated changes across physiological, behavioural, and experiential response systems. This general response coherence postulate is also present in James’ theory and in the recent revival of the ‘somatic theory of emotion’ . Often, this response coherence is associated with an evolutionary perspective on the function of emotions . Despite its apparent face-validity, the relationships between the physiological, behavioural, and experiential components of emotion have been found to be complex. While a proportion of studies found support for response coherence, several other studies did not. In mentioning the ‘physiology of emotion’, one is most often referring to the role of the autonomous nervous system (ANS) in emotion. ANS activity is viewed as a major component of the emotion response in many recent theories of emotion . There exists an extensive body of research on the interrelationship of ANS activity and (felt) emotion. However, across different theories on the matter, many oppose each other to a certain extent, and so do findings from related studies that have tested these theories. Thus, the overall conclusion to date seems to be that “there is no scientific consensus on whether there exists a relation between emotion and the organization of autonomic nervous system (ANS) activity and, if so, in what form (p.395)” . As it appears, the type of and strength of any given relationship between a measure of physiology and other emotional aspects are dependent on multiple factors. So, instead of investigating single isolated changes in physiology and their effects, alexithymia subtypes using latent profile analysis. Psychiatry Research, 2021. 299, 82. Moormann, P.P., et al., New avenues in alexithymia research: The creation of alexithymia types, in Emotion regulation: Conceptual and clinical issues., A. Vingerhoets, et al., Editors. 2008, Springer Science + Business Media: New York, NY, US. p. 27-42, 83. van Dijke, A., Alexithymia types in borderline personality disorder and somatic symptom disorder. 2018.
1 General Introduction 17 discerning patterns of coherence would require considering comprehensive arrays of physiological measures, as well as very detailed operationalizations of emotion constructs and sharp specifications of under what conditions an experiment was performed [87, 89]. Perhaps, we contend, this lack of compelling evidence on response coherence is mainly due to too much variation in operationalizations of phenomena and yet too shallow or superficial conceptualisations of potential relationships. So, ironically, there may be a lack of ‘coherence’ across the field of research clouding relationships between emotional response systems. However, with increasing knowledge on both the extensiveness and the specificity of variables involved in the matter of response coherence in emotion, the emergence of more extensive and innovative research designs, and more clarity on what operationalizations to use for what phenomena, and how to measure them with what instruments, this should then become clear over time. Support for the latter assumption was already found in a thorough review of the evidence by Kreibig . Her findings, although tentative due to the multiple assumptions she had to make and considerable degree of abstraction she needed to deal with the large variety of 143 experimental studies, suggest there is considerable ANS response specificity in emotion when considering subtypes of distinct emotions. What also is important to note, is that while dissociation among the different response systems/modalities of emotion may come across as aberrant and pathological, it may actually be quite normal [13, 86, 87]. Emotion regulation, for example, may influence subsystem coherence by influencing some response systems but not others. Emotions can be elicited by subliminally presented stimuli that do not enter conscious awareness. As with many of the neuronal (and other) processes taking place within our body, much of our cognitive and cognitive-emotional processing takes place outside of the window of consciousness . This is probably for the better: being aware of all slight emotional changes would probably be highly unsettling, dysfunctional, and as a result, pathological! Thus, conditions may arise under which people do not report and/or are not aware of an emotional experience, while other subsystems, such as facial expression, physiological activation, and behavioural tendencies indicate occurrence of emotion. Still, although less than perfect coherence seems natural, and probably even functional, virtual absence of coherence will lead to dysfunction. Indeed, alexithymia can be conceptualised as a state of absence of coherence between the subsystems. Alexithymia is associated with a decoupling of experiential and physiological arousal when exposed to emotionally negative stimuli . This decoupling of physical and self-reported responses - sometimes addressed as the ‘dual-processing’  or ‘lower integration’  of emotions – has been confirmed in BPD. What further complicates matters is that when emotional arousal reaches high levels, it begins to
Chapter 1 18 act as loud ‘background noise’ that further hampers the ability of emotion identification in patients with BPD . 1.6 (Not) hearing James’ sounding box: The link between interoceptive awareness and emotional awareness As one of the hallmarks of BPD is that patients deeply struggle with emotion regulation, there is no doubt that people with BPP have emotional responses. In fact, many patients with BPP report having ‘too many’ and ‘too strong’ emotions . Still, as it also seems true that they have a lack of emotional awareness due to high levels of alexithymia, reality will be that many of their emotions will play out unnoticed to them. This could – at least in part – explain why in BPD emotions can really get out of proportion – and out of hand . Perception of internal bodily states, or interoceptive awareness, is found to be associated with the subjective experience, awareness, labelling, and understanding of emotional processes [11, 57, 92-95]. Recent findings from neurological studies suggest substantial overlap in systems involved in reflection on somatic experience, subjective emotional experience, and emotion labeling [92-94, 96]. The general notion of interoceptive awareness has been further specified by distinguishing two underlying different, and partially independent, capacities that are included in it: the so-called interoceptive accuracy and interoceptive sensibility . The notion of interoceptive accuracy describes our capacity to identify internal body sensations, while the notion of interoceptive sensibility refers to our capacity to focus on our internal sensations and to take them into consideration from a cognitive point of view. Although still inconclusive, there is some evidence that alexithymics exhibit a normal to excessive activation with respect to the physiological component of emotional arousal [84, 85], but atypical interoceptive awareness [97, 98]. These findings can be interpreted as the result of a combination of normal to heightened interoceptive accuracy and lacking interoceptive sensibility . Although not unequivocal, overall findings from research on BPD show a picture indicative of a lack of interoceptive sensibility: blunted experiences despite heightened physiological responsiveness to emotional stimuli [99-101]. Research findings by Suvak et al.  support this notion, showing that BPD patients generally focus less on personal physiological arousal than control participants. Also, Preece et al.  come to similar conclusions presenting their ‘attention-appraisal’ model of alexithymia, suggesting a difficulty attending to feelings as one of the main characteristics alexithymia. Had James been studying alexithymia, he would perhaps have contended these patients may fail to notice their ‘sounding box’  producing sound; and when noticing it, failing to hear that the sounds it produces are more than just vibrations but are part of a musical play.
1 General Introduction 19 1.7 Using mobile technology to facilitate and enhance emotional awareness So far, we discussed how William James pointed out that [noticing] the sensation of bodily changes is a necessary and primary condition of emotion, and how important it is for human functioning and wellbeing that one is able to regulate emotion. People with BPD experience great difficulty in regulating emotion, and often struggle with alexithymia - i.e., a lack of emotional awareness. However, studies show that people in general are all only partially aware of their emotional responses. This can be explained by a limited coherence between the physiological, behavioural, and experiential response systems of emotion. Still, it is a given that people differ substantially regarding the extent to which they are aware of their emotions. In people with alexithymia, awareness – or response coherence – of emotion is strikingly low. It turns out that people who are more aware of their physiological responses – those who have higher interoceptive awareness, appear to also have higher emotional awareness. Thus, people with alexithymia could benefit from treatment that increases awareness of their physiological arousal. Given the implications of alexithymia in BPP and limited treatment options for it, there is a need to address alexithymia more directly in treatment and improve the awareness of emotions in patients with BPP [83, 102]. For that, they would need help in being reminded of their ‘sounding box’ and the music it plays, i.e., their psychophysiological reactions and constructed emotions. Given the rapid development of wearable biosensing technology, it seems it could deliver just that reminder [13, 41, 52, 72, 103-105]. According to Van Daele et al. , “the potential of [including measurement of] psychophysiology [in psychotherapy] has been best documented in the context of biofeedback. Real-time physiological processes like heart rate or skin conductance are shared with patients as a part of treatment, with the aim of helping them to gain voluntary control over these processes. (p.47)” Present-day wearable, mobile biosensor technology offers the opportunity to employ biofeedback ‘in the wild’ . Advances in mobile sensor technology allow for relatively easy measurement of physiological changes of clients in many situations in an unobtrusive way . “Equipped with cutting-edge sensing technology and high-end processors, smartphones [and other smart-devices] are able to unobtrusively identify human emotions and are an ideal platform for delivering feedback and behavioural therapy in an ‘‘all the time everywhere’’ pervasive computing model… Wireless wearable biosensors [such as found in smartwatches] can be used for measuring physiological signals, such as electrodermal activity, heart rate, temperature, and respiratory rate. Information
Chapter 1 20 gathered from these sensors can be used to make inferences about peoples’ states of affect” . Although the quality of the data gathered by the ever-increasing diversity of wearable devices is not yet fully meeting the gold standards of state-ofthe-art lab equipment, collecting data in more ecologically valid settings is promising for psychological assessment and intervention [110, 111]. The use of mobile technology in health care has been termed mHealth . Mobile apps are of particular interest because they may have additional benefits beyond accessing websites and text messaging that may make them a particularly valuable platform for dissemination of interventions. Recent years have seen an enormous increase in the number of mHealth apps, claiming to help improving one’s mood, emotional balance, or other aspects of mental health [112-114]. At the start of 2020, there were already nearly 20,000 mobile MHealth apps in the app stores . mHealth broadly includes the use of mobile devices such as smartphones, tablets, personal digital assistants, and more recently, wearable devices. Lui, Marcus and Barry  have given an overview of the potential advantages of mHealth that are identified by scholars. These are that mHealth can overcome barriers associated with cost, transportation, lack of therapists, lack of insurance, or a long waitlist for services, and that it can contribute to less stigma and more privacy. Another important potential advantage is that interventions can be delivered in the moment of need in any location and time, such as during high-risk or triggering situations, or times of significant distress. Furthermore, when mHealth is used as an adjunct to traditional therapy, it has the potential to increase homework compliance and generalization of therapeutic skills outside of sessions. Finally, mHealth may also promote early identification and early intervention, as well as offer brief services to those who may have less severe or subthreshold symptoms. The connection capabilities of smartphones and their embedded sensors allows the unobtrusive collection of active information from subjects on their natural environment including ecological momentary assessments using tests or questions, as well as passive objective data from device usage patterns and sensors. These methods avoid the possibility of recall bias, which affects standardised scales and questionnaires applied at a specific time point to assess the presence of symptoms over the last previous weeks or months [116, 117]. 1.8 Gaps and risks of mHealth apps However, the use of mobile apps for clinical purposes is not without risk. Apart from a limited number of decent exceptions (such as ), the majority of these apps seem to be developed with little regard to the specific characteristics and actual needs of its target users. Many of these applications also fail to incorporate current
1 General Introduction 21 scientific or medical knowledge on their prospected users in their design [113, 114, 116]. The quality of online mental health information, including smartphone applications for mental health, currently varies greatly . According to dr. Stephen Schueller, Executive Director of OneMind Psyberguide (a non-profit website that reviews mHealth apps “based on the app’s Credibility, User Experience, and Transparency of Privacy Practices”) only 3 to 5% of all mHealth apps are research based . This puts at risk mental health patients who decide to use these notvalidated, potentially ineffective, and even harmful apps. Another concern is risks involving privacy and confidentiality. Data gathered from apps can be accessed by unauthorized individuals through digital theft or physical loss of the phone; or apps may have inadequate data protection, may not fully inform users as to what information is automatically gathered and returned to software developers, etcetera. Despite these security risks and other challenges of mHealth, the development and dissemination of mental health apps continue to proliferate and outpace both research and regulatory policies . And patients, in search of ways to improve their mental health, are eager to pick them up and use them . 2. Aims and outline of this dissertation The aim of this dissertation is twofold. First, to add to the understanding of alexithymia, especially with regard to borderline personality pathology as one of the main, most severe, and ubiquitous forms of psychopathology. This aim is addressed in part I and II. Second, to contribute to the advancement of treatment of alexithymia by using a transdisciplinary, scientist-practitioner approach to design a crossmodality, biosensor-informed wearable application, which can continuously support emotional awareness in daily life. This aim is addressed in part III. Each part corresponds to one of the three research questions of this thesis. The research questions addressed in this thesis are: 1. What are the characteristics of a comprehensive, transtheoretical account of the concept of alexithymia and its implications for patients and their treatment that can be learned from the evolution and development of the concept over time? 2. To what extent are alexithymia and low emotional awareness associated to borderline personality pathology? 3. Is it feasible to develop a biosensor-informed wearable app aimed to support training of emotional awareness in patients with borderline personality pathology by employing a design science paradigm?
Chapter 1 22 Part I: (Trans)theoretical account of alexithymia Chapter two focusses on alexithymia as a general transdiagnostic, trans-modal factor in mental health. Although there is consensus that alexithymia is a phenomenon in which people experience difficulties in identifying and verbalizing emotions, the exact definition has been a topic of debate not long since first use of the term in 1973. With increasing knowledge, changing research paradigms and new and better research instruments, the concept has evolved over time as it went through different ‘eras’. In the current, only recently entered era, there is evidence of an ongoing endeavour to integrate existing and new knowledge from not only different individual authors, different research instruments, or different psychological theories, but also from other, more medically/biologically oriented areas of science. This gives rise to a multifaceted, transtheoretical account of alexithymia in which there is an increasing focus on the lack of emotional awareness and with that, the essential role of the human body in (experiencing) emotion. To provide the reader with a thorough understanding of the origins of the concept and its evolution over time into the trans theoretic concept as it is today, this chapter presents a broad overview and summary of past and current developments regarding alexithymia. Part II: Relationship between alexithymia and borderline personality pathology Chapters 3 and 4 focus on the associations between alexithymia and borderline personality pathology (BPP). Emotional dysregulation is regarded being at the core of BPP. Although this emotional dysregulation is likely to be the result of multiple potential underlying processes and factors, one factor that has increasingly been gathering attention is a lack of emotional awareness. As was learned from chapter two, prevailing contemporary views on alexithymia define it as in principle being a pathological lack of emotional awareness. The study presented in chapter 3 assesses the relationship between borderline personality pathology and (lack of) emotional awareness, including alexithymia. Although there is a steady stream of research on emotional awareness, alexithymia and BPP, there has not yet been an integration of results. A meta-analysis was conducted with a total of 39 studies, involving 8321 subjects. The study was the first to systematically assess overall results across studies. It also contains a preliminary exploration of the associations between the separate facets of alexithymia and BPP. Findings from the study contribute to a better understanding of the extent and intensity by which the concepts of BPP and emotional awareness/alexithymia are connected.
1 General Introduction 23 Chapter 4 describes an exploratory study in which the popular presumption of alexithymia being a transmission mechanism between BPP and several forms of emotional dysregulation is examined. To date, many of the studies on alexithymia, BPP and related clinical variables are still centred around examining bivariate associations. Although some studies contain analyses on moderation effects, there seems to be no published work on the possibility of alexithymia being a mediator in the interplay between BPP and other clinical variables. In this chapter, I describe a study in which a combined group of adult psychiatric in- and outpatients completed questionnaires on BPP, alexithymia, depression severity, dissociative experiences and direct and indirect SIB, and a clinical interview on alexithymia. The study addresses two important shortcomings present in the majority of studies on this topic: it not solely relies on the use of a (criticized) self-report questionnaire for alexithymia but employs a multi-method approach by also gathering data via a (psychometrically valid) structured clinical interview. Second, most studies still include a categorical approach for determining presence of borderline personality pathology in participants. In this study, BPP is measured via a dimensional approach, which is generally regarded as a more valid take on personality disorders. With its focus on alexithymia as a transmission mechanism, outcomes of this study add to the understanding of the role of alexithymia in BPP on a ‘deeper level’. Part III: development of a biosensor-informed wearable smartwatch/smartphone application to advance treatment of alexithymia and low emotional awareness Part III handles the second aim of this thesis. Here, the basic research paradigm is that of design science, rather than that of natural (psychological) science as it was in part I and II. Within design science the use of User Centered Design (UCD) - or its evolution, User Experience Design (UXD) - in mental health related apps has become a hot topic. Scientifically designing and developing a new type of therapeutic intervention requires three processes to be completed: first, the process of creating a conceptual framework by which to structure and formally guide subsequent development. Second, the process of identifying the main requirements for the intended intervention. Third, the process of actual practical realization of the intervention, in this case a software application, requiring use of academically valid tools and (evaluation) methods. However, many studies miss out on one or more of these three steps. For example, design frameworks provided in UCD studies often do not adhere to academically sound procedures and methods. Most publications fail to provide the reader with clear guidelines on how to actually go about in such usecase scenarios. Also, in many studies patients are not involved in the process of creating the app or intervention.
Chapter 1 24 Chapter 5 focuses on the first two processes mentioned above. It describes a User Experience Design (UXD) study aimed at the development of a scientifically informed design-framework and the identification of the main requirements of an app meant to support patients with BPP in becoming more aware of their level of emotional arousal. The study included several inpatients with high levels of both borderline personality pathology and alexithymia in the process of designing an e-coaching app from the earliest stages of development - as well as several mental health care professionals who are professionally involved in these patients’ treatment. The study aims to deliver a UXD framework that can help guide future projects on mHealth development. It also adds to current literature some much welcomed information on the intricacies as well as the added value on including BPP patient user groups. Chapter 6 describes the next stage of development in a subsequent UCD/UXD study which involved both patients, mental healthcare professionals and UCD/UXD experts. The study expands on the previous study described in chapter 5. Continuing the iterative approach on designing, it describes the process of further adjusting and expanding the conceptual design framework, supplementing the inventory on user and design requirements, and the ultimate delivery of a working prototype of the wearable application to aid in treatment of alexithymia in patients with high levels of BPP. The presented study thereby is one of few to combine research with the actual development of an employable app. As mentioned above, at one end of the spectrum most mHealth apps lack (published) empirical research, yet at the other end many scholarly publications describe concepts of portable mHealth interventions, but do not foresee in actual development and completion of a working app. This chapter describes in detail how a newly developed, tailored participatory design approach can deliver an app that is employable in the daily practice of mental healthcare. Chapter 7 provides a summary and discusses the overall findings in the light of the double aim of this thesis.
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