Compulsory interventions severely restrict constitutional rights of the patients. They are exceptional measures only to be considered under strict and clearly defined ethical and juridical conditions. They do confront mental health professionals with difficult questions challenging their individual professional identity as well as the identity of psychiatry in general. This complex field is discussed in reference to the conceptual history of psychiatry, to different contemporary approaches to the notion of autonomy, and to three ethically demanding issues: autonomy and care, psychiatry and society, personhood and interpersonal relations. Engaging open mindedly in these debates may be cumbersome for psychiatry, but will yield a substantial return, particularly regarding its identity and acceptance by society. However, this paper will link it with the fundamental question of psychiatry’s identity as a medical field in clinical and scientific contexts. In recent years—albeit, of course, not for the first time in the history of psychiatry—this conceptual area generated intense debate and controversy. Two different epistemological levels are distinctively intertwined: the theoretical level when trying to define the proper “object” the field is dealing with: Is it the individual person , the person’s bodily existence, especially his or her central nervous system (neuroscientific approaches), or the person’s environment, ranging from close relationships to society as a whole?Psychiatry’s self-understanding is challenged on the practical level, the last decades brought about a remarkable paradigm shift from strong, if, of course, benevolent paternalistic attitudes to an explicit emphasis on patient autonomy and informed consent, both in clinical work and in research. Such a strong and, at times, poorly reflected notion of autonomy has been questioned repeatedly by indicating potentially negative consequences of “overvaluing autonomous decision making”  questions. Psychiatry has to face them, especially when tackling conflictuous topics like compulsory interventions. This, however, does not mean that philosophical considerations should be given too much weight to the disadvantage of practical issues in psychiatric services. On the contrary, if, at this point, listening to Karl Jaspers (1883–1969) who thoroughly knew both worlds, the psychiatric and the philosophical one , one mig“The reason why the psychopathologist should care about philosophy is not that it will teach him anything positive for his own scientific field, but that it will provide him with the inner space to realize what knowledge he can possibly acquire.” , p.40 [tIn other words, philosophical reflection itself may well be seen as necessary but not as sufficient precondition for good clinical practice in psychiatry, including the issue of responsibly handling compulsory interventions.Before turning to three fields of tension that are practically relevant and wield major influence over the identity of psychiatry, the concept of autonomy, central to modern medical ethics, shall be highlighted .The understanding of persons with a mental disorder as patients, as suffering individuals entitled to be taken seriously and treated efficiently, is, from a historical point of view, a comparably young concept—as is psychiatry itself: Both emerged in the era of enlightenment in the eighteenth century with its strong emphasis on rationality and personhood, that is, the notion of rationality created an optimistic stance over the scientific comprehensibility, not to say mastery of our world. The concept of personhood postulated that human individuals are not more or less passive elements of given social or political structures like kingdoms, religions, or nations, but possess a dignity of their own which includes autonomous and responsible decision making. Immanuel Kant’s (1724–1804) philosophy is the most prominent representative of such an anthropological framework. Pars pro toto, the categorical imperative, central to Kantian ethics, shall be mentioned because of its close links to the notion of autonomy:“Act in such a way that you treat humanity, whether in your own person or in the person of any other, never merely as a means to an end, but always at the same time as an end.” .only as a means to my own intentions is therefore disrespectful, ignores his or her autonomy, and cannot be ethically justifiable.To see another person Thus, we may, with good reasons, trace core elements of modern psychiatry back to the evolving liberal ideas of the eighteenth century and their focus on autonomous persons and their indispensable civil rights.and carried risks. It was exactly this caution that led Max Horkheimer (1895–1973) and Theodor W. Adorno (1903–1969), leaders of the “Frankfurt School,” to coin the term “dialectics of enlightenment”  tradition.In the second half of the twentieth century and up to now, among others, two radically different alternatives were developed.conditio humana. For existentialist philosophers, the most prominent one in this context being Jean-Paul Sartre (1905–1980), humans do not only possess the ability or the option to act autonomously, but also must decide for themselves; they are, in a way, forced to use their freedom. This, nota bene, is a formal argument. It does not address the issue of what the individual person choses or whether his or her choice is wise or silly, good or bad. It also is a radically individualistic approach: Any person decides, must decide for himself or herself without having to refer to a given normative framework.The first one defined autonomy  as the very center of what is called The second approach denies the purely individualistic nature of autonomy, which, on the contrary, is defined as essentially interpersonal. In this view, autonomy is neither depending on metaphysical principles nor on radical individual freedom but develops and, in a way, exists only when persons communicate with each other on the basis of mutual acceptance and respect. An existentialistic author, Emmanuel Levinas (1906–1995), tried to bridge both ways of thinking about autonomy by introducing an insurmountable gap between “me” and “the other,” the latter understood as an existentially necessary element, that is radically different and not fully comprehensible to me. Therefore, Levinas’ ethics must not be mistaken as a dialogical approach like the one that, in contrast, gave distinction to Martin Buber’s (1878–1965) or Harry Stack Sullivan’s (1892–1949) work , 13 logical, social, and spiritual levels are covered by the binding mandate society awards to psychiatry. This mandate, however, is not a straightforward one. Indeed, it contains complex and even contradictory conceptual layers that may well question psychiatry’s identity.The following examples shall further elucidate this:– Given its particular “object” mentioned above, psychiatry has to accept that philosophical, anthropological, and also political issues will necessarily leave their marks in its own realm: cultural imprints on psychiatric nosology, mind–body problem, competing perspectives of natural sciences and humanities in research, and, last but not the least, the risk of political abuse of psychiatry, to mention a few.without exception be ordered by a judge, not a physician. Others doubt that a mandatory and time-consuming involvement of a juridical person will be favorable for the patient, since only the psychiatrist is skilled to quickly and substantially decide about the best option in an emergency situation. Of course, there is no simple answer to this dilemma. However, any professional person, who takes part in the diagnosis and treatment of psychiatric patients, has to seriously look into this subject.– Our field has always seen controversial debates on whether or not psychiatry should accept a significant role in public policy, especially regarding decisions about compulsory hospitalization or treatment. In Switzerland, for example, the head physician of a psychiatric institution is entitled by law to order a compulsory treatment under certain conditions .– Society’s attitude toward psychiatry tends to be ambivalent: It commissions psychiatry to deal with people behaving in a peculiar way or reporting distressing subjective experiences like a severely depressive affect, delusional ideas, or hallucinations. The same society, however, often displays a skeptical, if not distrustful, stance on psychiatry, being influenced by negative (and stigmatizing) stereotypes about mental disorders. This tension necessarily affects people who work in psychiatry—and their professional identity.At present, as shown above, the ethical debate on autonomy places considerable emphasis on the interpersonal domain, e.g., in care ethics or narrative ethics. This is remarkably parallel to the conceptual history of psychiatric thinking: Initially drawing on postulates of eighteenth century enlightenment, psychiatry ever since debated the role of personal autonomy and its conjunction with the interpersonal realm. For Immanuel Kant, the subject’s personal freedom necessarily depended on the acceptance of other subjects as equally autonomousFor Karl Jaspers, psychiatric diagnosis and therapy were not just the application of certain techniques, but distinctively imbedded into an interpersonal relationship . The AmeModern approaches in clinical medicine to strengthen patient autonomy are manifold, e.g., shared decision making , empowerIn summary, the issue of interpersonal relations, although discussed controversely, is one of the hallmarks of psychiatry and its professional identity. Compulsory interventions, again, present a constant challenge: Without an enduring process of critical reflection, psychiatry will not be in the position to tackle this problem adequately, i.e., to stick to the fine line between overt paternalism and pseudo-liberal negligence.Psychiatry is a practical medical field. Therefore, in line with Karl Jaspers’ position in the quotation above, philosophical considerations in psychiatry will only be of value if they create a more profound understanding of diagnostic and therapeutic processes. They cannot reduce the clinician’s burden, but—in the best case—they will make his or her decisions clearer and more substantial.This leads to four main conclusions:– Compulsory interventions severely restrict constitutional rights of the patients. Under no circumstances may they be regarded as undisputed “regular” constituents of psychiatric work. They are exceptional measures only to be considered under strict and clearly defined ethical and juridical conditions.– Compulsory interventions confront mental health professionals with difficult and not seldom provocative questions that challenge their individual professional identity as well as the identity of psychiatry in general. Since there is no “autonomy light,” these debates are demanding endeavors. They have to be integral parts of psychiatry and cannot be fully delegated to external experts or institutions, e.g., ethical councils.– Guidelines about compulsory interventions and their prevention are highly useful. However, they alone cannot resolve the ethical dilemma brought forward by every single case. Clinicians must stay aware of their indispensable responsibilities.– The debate about autonomy in psychiatry will serve as an effective and credible point of contact with society, since autonomy also is a central topic in social and political contexts. This common interest may stimulate dialogues and, in the best case, help to fight discrimination of psychiatric patients, professionals, and the field itself.PH is the sole author of this manuscript.The author declares that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.


The use of music performance in music therapy with military service members is discussed as a vehicle for social transformation and reintegration. The use of performance in music therapy is not without controversy primarily because therapy is considered a process, not a product, and confidentiality and privacy are essential components of therapy. However, others have argued that public performances can validate therapeutic changes in clients, give voice to their experiences, raise awareness of social issues within their communities, transform perceptions of injury, or illness in audience members, and may result in the clients gaining support and validation from their communities. We discuss the potential of music performances to contribute to individual development, reinforce rehabilitation, enhance function, and facilitate change at the community level to support reintegration of military service members. We illustrate this through two brief case reports of service members who received music therapy as part of their treatment for post-traumatic stress disorder, traumatic brain injury, and other psychological health concerns at the National Intrepid Center of Excellence, a Directorate of the Walter Reed National Military Medical Center, Bethesda, MD, United States. The service members wrote, learned, and refined songs over multiple music therapy sessions and created song introductions to share with audiences the meanings and benefits gained from integrating performance in music therapy. The case reports also include excerpts of interviews conducted with these service members several months after treatment about their experiences of performing and the perceived impact of their performances on the audience and greater community. Music performance is an integral part of the creative process. Whereas the general public may associate the concept of performance with entertainment, performances are increasingly used to stimulate discourse related to socio-political and psychological issues e.g., . In musiwhen, not if, performance might be considered an appropriate method in music therapy” (p.124).Board-certified music therapists use a variety of music experiences within a therapeutic relationship to address individualized goal areas  , which mPerformance integrated in music therapy offers opportunities for personal transformation and social change. First, performance provides a context for clients to creatively connect with audiences and share their experiences through artistic expression . ThroughMusic therapy is “a reflexive process wherein the therapist helps the client to optimize the client’s health, using various facets of music experience and the relationships formed through them as the impetus for change” , and is Performance contributes to service members’ agency in recovery processes and has the potential to facilitate change and enhance overall perception of self and others by mastering challenges of TBI and PTSD. We find it helpful to conceptualize the levels of transformation per Bronfenbrenner’s Ecological Systems theory , specifiPerformance provides opportunities for service members to be viewed in ways that enhance interactions within different environments . It allows service members to increase awareness of self-perceptions, challenge belief systems, and view treatment as an evolving mechanism for change. Historically, the image of the warrior across many cultures has represented strength, power, and indestructibility, while demonstrating emotions and vulnerability has been interpreted as weakness . PerformThrough observing service members’ performances, audiences, commonly comprised of family, peers, clinicians, and community members can: (1) increase awareness of service members’ unique strengths by observing their products of music therapy, (2) comprehend service members’ experiences in an innovative way, (3) shift perspective of service members as healthy and resilient, rather than viewing deficits, and (4) develop an understanding of how to construct supportive communities that better accommodate service member (re)integration.Performance is not a requirement of music therapy, rather an optional component that can serve to cultivate tactical creativity and culminate therapeutic experiences. If service members decide to perform, they have complete autonomy over their experience including: (1) target audience, (2) arrangement/dynamics, (3) accompaniment/instrumentation, and (4) co-performance participation. Co-performances can occur between service member and peer(s), music therapists, providers from other disciplines, visiting musicians, or any combination of these. In some cases, performances are recorded and used as auditory feedback for service members to gain insight, further process experiences, and have as a tangible item to take with them.It is important to consider how music therapists utilize the therapeutic relationship to support performance. Transparency regarding potential benefits and risks of performance must be addressed prior to client engagement in performance. Service members may be hesitant about performing personal content and therapists must remain acutely aware of this by placing emphasis on preparation, continuous evaluation of the experience, and offering emotional support throughout . There aWe present here two examples of performance initiatives integrated into military music therapy programs followed by two brief case reports of service members who received music therapy in intensive outpatient and longitudinal care at the NICoE and performed at the Creative Arts Café as part of their treatment. Case examples are based on clinical observations, service member interviews, and focus on how performance shaped social transformation. Both service members were interviewed about their experiences several months after treatment. A content analysis of the interviews focused on three areas: (1) music therapy treatment, (2) transformation through performance, and (3) post-music therapy transition. Please note that pseudonyms are used to maintain client confidentiality.The Semper Sound Band (est. 2011) is a component of Resounding Joy’s Military Music Therapy program . PerformBased on the concept of the Semper Sound Band, the Creative Arts Café is an initiative developed at the National Intrepid Center of Excellence (NICoE) in 2016 and replicated across Creative Forces sites . The Cre“Greg” is a male in his twenties and was a Sergeant (SGT) in the United States Army. He was an unrestrained passenger in a Humvee rollover in 2014. He suffered intracranial hemorrhages, presented unresponsive, and was intubated. Greg was medevacked, stabilized, and returned to the United States for ongoing treatment. He was referred to music therapy by a nurse case manager for cognitive deficits due to severe TBI. Greg received a music therapy assessment in January 2016 and received weekly individual and small group sessions for 15-months as part of outpatient treatment.“I chose that song, because I knew for a fact that it would help with my speech...and it helped with my memory.”Upon initial music therapy assessment, it was determined that Greg was experiencing expressive speech issues in addition to memory and coordination deficits. The music therapist consulted with speech therapy to create integrative treatment approaches. Music therapy sessions were designed to assist his breathing, speech fluency, and rhythmic phrasing. A few months into music therapy, Greg and a fellow service member were working on a song that supported shared speech and cognition goals. The music therapist determined that it was appropriate to offer performance as an opportunity to: (1) encourage active participation in treatment, (2) enhance self-practice, and (3) engage with an audience while applying skills learned in music therapy. Greg and his peer were working on the song, “We Didn’t Start the Fire” by Billy Joel and opted to perform it as a duet. In his interview “Greg” stated, “[Music therapy] helped my pronunciation of words, [performance] pushed me harder in music therapy, which in turn pushed my brain harder to focus on my words and my motor functions.” He furthermore acknowledged how performance had helped him address vocal and cognitive changes experienced since his accident: “My voice changed since I got hurt...I didn’t really want to talk to people... With music therapy, I learned not to be ashamed of my voice, and that it won’t get better if I don’t talk. It helped me with my memory because I had to remember lyrics, chord changes, and everything else...it made a great impact overall.” Through performance in music therapy, Greg gained insight into personal struggles and was motivated to continue engaging in independent practice and performance. He shared, “Watching expressions of people I don’t even know...seeing and feeling that someone you’ve never met before [is] showing happiness and joy from your performance…that is what is really empowering.”Therapeutic singing, rhythmic cueing, and vocal prosody exercises were used to address hypernasality, slurred speech, fluidity, intonation, and articulation. Greg stated, Between music therapy sessions, I was rehearsing. Every time I got stuck on a word, I went back to my room and [would] say it, and my speech got clearer. It made me feel amazing after [performing] because, honestly I noticed every time I did something, people would be amazed.” Performance supported Greg in changing from an internal focus to being able to communicate with others using music. This was observed by a shift in song selections from those that solely challenged his speaking/singing ability to songs that he connected with on a deeper level. Intentional song selection eventually led to Greg writing original compositions that reflected his belief systems and included messages to inspire himself and others. He spoke about the emotional benefits and comfort that he experienced from performance in music therapy, “With music, that’s your friend, your therapist, and everything beyond, and it doesn’t have anything bad to say about you ever.”Greg participated in monthly performances as a therapeutic tool to provide awareness of his successes in rehabilitation goals. Eventually, he was able to simultaneously sing and play, which is a high-level cognitive process and an ongoing goal. He recounts, “[Performance] worked my body harder. If I did not have music therapy, I would not be doing as well as I am today. I [still] incorporate what music expresses in my life.”When Greg started music therapy, it was difficult and uncomfortable for him to speak on command or initiate conversations. Through the process of preparing for performances, which also included verbal song introductions, he continued to make clinical gains post-music therapy treatment, including speaking at his retirement ceremony and national public performances. Greg medically retired in May 2017 and is currently attending college with aspirations to become a motivational speaker. He reflected about his experiences performing in music therapy, ““Chad” is a male in his thirties and was a Staff Sergeant (SSgt) in the United States Marine Corps. He served multiple combat deployments over his 13 years of service, during which he experienced blast exposure. Upon homecoming, Chad was diagnosed with mild TBI, chronic PTSD, and other combat-related psychological health concerns. He initially engaged in individual and group music therapy through the intensive outpatient program. Chad continued music therapy for 1 year post-IOP, in weekly individual sessions.Something about music made it easier to talk about issues that were bothering me. We spoke about issues that I hadn’t even discussed with my [psycho]therapist at that point.” After 8 months of individual sessions, Chad opted to perform a song at a Creative Arts Café that he had been preparing for his wedding. The integration of personally meaningful music into music therapy motivated his engagement in performance. Lyric analysis and songwriting facilitated emotional expression, as Chad modified songs to reflect his values. He shared, “I was able to add a spin on the song from my perspective, with help from the music therapist, which involved changing lyrics at the end, “Mercy,” look what’s become of us/One by one we turned it around/Maybe carry on just a little bit longer/God’s gonna give us what we need”  to assist him in processing his military service and positively reframing self-perception and identity. Chad often selected songs by preferred artists to express things that were difficult to communicate prior to music therapy. He recounts, “” ‘When the walls come down,’ that’s how I felt music therapy was helping me...my walls coming down.” Chad’s musical engagement often inspired feelings of hope and reduction of personal guilt as reflected in his comment, “I feel like singing or even whistling means that there is some kind of happiness inside me, and it’s not all dark...Music therapy is like God answering my prayers. A light in the darkness, and a reassurance that while I have experienced horror, I am not the cause of it all.” He shared how performing helped him reduce isolation, “Performances can help to reconnect with people and even give others a chance to understand me more.” The reciprocal experience of self-understanding while feeling “heard” by the audience allowed for continuous progression in treatment.A song of particular significance that Chad subsequently performed was an arrangement of “Walls” by Kings of Leon. He reflected on the song’s symbolism,The first line in the song is, “Don’t give up”. Even though I felt like I had so many times, I didn’t give up, and to this day I am alive and not giving up. It was a sad song for me when the demons were in control, but God transformed the song into healing when it took on a new meaning for my wife and I, when we listened to it together. It transformed again as we grew as a couple, and we both went through really hard times along the path to recovery. [My wife] stayed with me through everything...there was no way I could let this song not be a part of our wedding day and music therapy was the reason it became a part of it.” Chad medically retired in July 2017.As Chad began preparing for his transition from active duty, he transferred skills developed through performance to continue growing in his life and relationships. His evolving interpretations of songs he performed in music therapy reflected his progression in treatment. For example, when he first used “Mercy” in sessions, the meaning was focused on in-the-moment needs, specifically symptom management. It progressed to address broader areas, namely humanization and becoming a better partner. Ultimately, Chad sang and played bass and percussion in a multimedia project of “Mercy” that he presented this to his wife, family, and friends at his wedding. He speaks about how the spirituality of the song aligned with his transformation in recovery, “Performance is an impactful tool for music therapists to utilize in support of clients’ transformative processes. When integrated with apt intention and appropriate oversight, performance can be clinically conducive, informative, and reciprocally beneficial for service members and audiences. Performance helps educate military leadership, clinical providers, and the general public about the power of incorporating creative expression into structured environments. Creative Arts Cafés are models replicated across multiple sites that serve to bridge the clinic to community, supporting the overall transformation of service members and their families by validating their experiences and allowing for expression of their inner-selves while feeling connected to audiences. Musical performance benefits our society as a whole, supporting personal, collective, and societal transformation. This shapes the performer as well the perception of audiences and builds stronger, healthier communities in which individuals thrive.The views expressed in this article are those of the author and do not reflect the official policy of the Department of the Army/Navy/Air Force, Department of Defense, or United States Government. The identification of specific products, scientific instrumentation, organizations, individuals or compositions is considered an integral part of the research endeavor and does not constitute endorsement or implied endorsement on the part of the author, DoD, or any component agency.The case studies presented in this article were determined exempt by the NICoE/WRNMMC institutional review committee. Written informed consent was obtained from the participants for the publication of the case reports.This study was carried out in accordance with the recommendations of the National Intrepid Center of Excellence/Walter Reed National Military Medical Center PAO and designated as exempt from ethics committee review. All subjects gave written informed consent in accordance with the Declaration of Helsinki. The protocol was approved by the National Intrepid Center of Excellence/Walter Reed National Military Medical Center PAO.RV is a board-certified music therapist and served as contract support to the NICoE through National Endowment for the Arts, Creative Forces: NEA Military Healing Arts Network. During her tenure at the NICoE, she was the primary music therapist of the service members who were highlighted in the case report section of this article. As lead author, she conceptualized this article and took the lead in writing the article. She was responsible for final edits of the manuscript. HB contributed to content analysis of the interviews and writing the manuscript. JB contributed to sections of the manuscript.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.


Despite their important applications in metrology and in spite of numerous experimental demonstrations, weak measurements are still confusing for part of the community. This sometimes leads to unjustified criticism. Recent papers have experimentally clarified the meaning and practical significance of weak measurements, yet in Kastner (Found Phys 47:697–707,  Weak measurements and weak values –3 are atIn what follows, I examine and disprove several of Kastner’s claims , but firFirst, we have argued that weak values simplify calculations. In , for insOur second claim was that weak values can be insightful and this is actually an historical fact. In addition to the above mentioned practical importance, weak measurements have led to the discovery of superoscillations , 19; to Regarding the definition of weak values, Kastner states “It is important to note that this is a theoretical quantity defined in terms of operators and states, without regard to any particular process of measurement. Thus, the term ‘weak value’ is something of a misnomer: there is nothing ‘weak’ about the value itself”. This claim can be mathematically falsified, as the weak value naturally emerges when employing the linear approximation of a system’s time evolution. This approximation is usually possible when the coupling is weak enough, and upon using the von Neumann measurement scheme. Incidently, the well-known derivation below has recently appeared in a book which Kastner co-edited .A is the observable to be measured, q) and T and coupling strength g.Let us, then, employ the following von Neumann interaction HamiltonianWhen performing a weak measurement on a pre- and postselected ensemble  coupled . But thesingle particle level, and moreover by [inherently quantum features, hence the comparison to a classical averages is misleading.Furthermore, Kastner then ventures to assert that weak values merely reflect a statistical quantity, rather than a quantity pertaining to each individual system in the measured ensemble. She further compares weak values to classical averages in this respect. This, however, was recently challenged on experimental grounds by , 7 and  showing eover by , provingS has been non-negligibly disturbed”. This, in my opinion, reflects a misunderstanding of the term “negligibly”. In the case described by Kastner, the system is absolutely not affected by the measurement, so the adverb “negligibly” is not in place. If, however, Kastner writes: “Clearly, therefore (unless we have exactly S is not in an eigenstate of its observable” are erroneous and miss the importance of weak measurements.An ancilla-based measurement, like the ones ACE and Kastner analyze, is commonly used. Clearly, during the measurement process entanglement between the measured system and the measuring pointer is created and then vanishes, but this fact alone does not tell us how much the measured state has changed. This disturbance depends on the coupling strength between the systems. When performing a projective measurement, the systems are strongly entangled, and hence a change in the pointer state definitely reveals itself in the state of the measured system. The power of weak measurements lies in the weak entanglement between the system and pointer, which upon a strong measurement of the pointer breaks down, but leaves only a minute change in the system’s state. Therefore claims such as “The only difference between this ‘weak measurement’ and the standard ‘strong’ or ‘sharp’ measurement is that As I emphasized in , weak meKastner also suggests that: “ontological claims based on such assertions need to be critically reassessed”. The problem with the last sentence is that Kastner seems to be unfamiliar with recent ontological claims [I now turn to what seems to be Kastner’s main argument, namely, “Assertions in the literature that weak measurements leave a system negligibly disturbed... are therefore unsupportable”. In light of the above, this claim might seem shocking, but it rests on three basic misunderstandings:l claims , 27–30. l claims  further l claims , 27, 28 strong, non-counterfactual measurements [Finally, it is worth pointing out a growing number of recent promising results which enable clarifying the TSVF predictions using urements –34. Bein


BBZ, Studio 7A, BBZ Plaza, Burbank, 7.30 pm.Abigail Repor‐Tastory, Discovery Presenter, turns to face the camera: Good evening and welcome to a new episode of ‘Discoveries that Change our Lives’. Our guest this evening is once again Dr. Anastasia Noitall‐Most(shaking hands) and thank you for appearing on the program.Dr. Noitall‐Most: Good evening Abi, it is always a pleasure to be here.Ms. Repor‐Tastory: Ani, this evening we want to discuss what seem to be amazing discoveries about the home microbiome and … did you mention ghosts in our pre‐show chat?Dr. Noitall‐Most: Yes, Abi. Some quite unusual and highly controversial discoveries have been reported recently. The backdrop to these new findings is that the microbial communities present in places we spend any time in – our homes, workplaces, garden sheds, tattoo studios, super yachts, karaoke bars, gyms, restaurants, tanguería, beauty parlours, etc., the so‐called Built Environment – contain the microbes of our skinMs. Repor‐Tastory: Yes, there has been quite a bit of news on the topic, especially via social media. But why is this so newsworthy?Dr. Noitall‐Most: Well, previously, it was thought that air had a sort of nondescript air‐dust characteristic microbiota derived from wind‐, garden blower‐, road sweeper‐, jet engine‐ and traffic‐suspended microbes from soil, vegetation, inanimate surfaces, and even dust from the Sahara, which is regularly blown north from Africaet al, who relish the varied tasty treats we thoughtfully provide for them in our built environment, and who are launched into the air by the daily/weekly/monthly clean‐up. And, occasionally, in some less well‐ventilated buildings, by a misma of fungal spores.Ms. Repor‐Tastory, signalling intense disgust: Ughhh, the thought of those creepy‐crawlies being part of my home makes me shiver!Dr. Noitall‐Most: Just so! Anyway, the key thing is that metagenomic analyses have shown that, although air of the built environment contains soil‐vegetation‐road‐Sahara dust microbes, it also includes significant numbers of microbes derived from human  skinMs. Repor‐Tastory: Ok, but what is the significance of this – how does it affect viewers?Dr. Noitall‐Most: Well, the thing is that even a relatively transient sojourn in a room leaves a microbial trail – we all shed skin continuously: the average human sheds on average 30 million bacteria per hourMs. Repor‐Tastory: But doesn't the wonderful DNA profiling technique already do the job?Dr. Noitall‐Most: Yes, Abi: it certainly does. However, DNA profiling has recently been getting a bit of bad pressMs. Repor‐Tastory: I see: so the microbiome of the built environment is a really important thing right now. But what is the issue with ghosts?Dr. Noitall‐Most: Well, as you said, this story was also widely spread by social media and one individual who learned about it this way was Professor Humpfrey Geisterbahn of the Department of Paranormal Studies at the University of Eastern Carpathia, who immediately had the idea that perhaps ghosts have a microbiome and may leave a signature microbial trail when they go on their nightly constitutionals. After consultation of his funding agency, and the BPRDFirst of all, he identified several well‐characterized ghost paths, all very dark corridors, remote from windows, in five uninhabited houses older than 200 years. He then designed special microbiome traps – basically 30 × 30 cm moist pads containing a sticky resuscitation‐nutrient solution, arranged in pairs, one above the other, 80 cm and 140 cm from the floor – and placed them along the paths at 2 m intervals. As controls, he placed traps along stretches of corridor not documented to be ghost flight paths. Over a period of several weeks, he installed himself in each house at an inconspicuous location where he could observe in comfort and, after every passage of a ghost, removed the microbiome traps for analysis, and replaced them with new ones for the next passage. Where possible, three repeat traverses of each ghost were made in the study, since some biologists believe 3 replicates to be the magic number for statistical analysis, though not all ghosts were always compliant and occasionally took irregular routes. Somewhat frustratingly, one ghost always took evasive action when confronted with a trap.Ms. Repor‐Tastory, shifting uncomfortably in her chair: OOOOHH! Gosh, Ani. This is so spooky! What was the outcome of the experiment?Dr. Noitall‐Most: Yes, it is certainly not your everyday grad student research project fodder! Anyway, the microbiome traps were subsequently placed in closed containers, and transported to a high security biosafety facility, an upgraded version of what had previously been a cold war biological warfare research station. Here they were analysed by cultivation, to obtain and identify the bugs that would grow on lab media, and by metagenomics, to capture all microbes and obtain approximate quantitative estimates of them.Gloamingia shiveri, a bacterium only found so far on the facial whiskers of vampire bats. And since none of the cultivated microbes were the same as or similar to the ghost‐associated bugs ‐ GAB for short – it seems that GAB are not culturable.The results of Professor Geisterbahn's experiments were rather interesting: the cultivation experiments revealed only typical well‐known dust bugs in both ghost and control paths, with no detectable differences between the two. However, the metagenomics analysis revealed that, in addition to the normal dust microbes found in old houses, there were a few different bugs that were specifically associated with the ghost paths. All of the ghost‐associated microbes were spore‐forming bacteria and fungi – i.e. microbes that produce spores which are a dormant form that can survive for decades, even centuries, and probably much longer. But, importantly, many were completely new, although a few were distantly related to Ms. Repor‐Tastory, shivering involuntarily: So there really are ghost bacteria!Dr. Noitall‐Most: Well, at this stage, results were rather preliminary and, as you can imagine, not readily accepted by the microbiology establishment. And, because the new bugs were, well…… new, there was no information on what they might do or have done.Ms. Repor‐Tastory: In other words, they were ephemeral?Dr. Noitall‐Most: Quite! Now, since Professor Geisterbahn had reached a dead‐end, he sought assistance from the Imaging Group of Mabriella Golinari and Ranfredy Mohde of the Walpur Gisnacht Institute for Cellular Pathology in Bad Hurzbarg in Northern Germany, which is not only a world leader in microscopy but also in growing difficult‐to‐culture microbes and exploring their biotechnological potential, for example the production of inhibitors that could be leads for new medicamentsInitial microscopic scrutiny of the material collected on the ghostpads revealed a lot of spores, but also about 40% of vegetative cells, as we can see in the screened imageGhost Organism Rescue Medium, or GORM for short, induced germination of practically all spores into vegetative cells, and thus allowed the team to obtain first high‐resolution images of the ghost microbes. Unfortunately, none of the germinated spores went on to reproduce and form colonies.The Bad Hurzbarg team tried out their entire spectrum of resuscitation media with very low nutrient concentrations and looked for germination of spores, but without success. They then brewed up several new media containing dust collected from the burial crypt of a nearby abandoned abbey and one proved to be a winner. This medium, which they designated Ms. Repor‐Tastory: Another dead‐end!Dr. Noitall‐Most: Well, not quite! In the old days, it was impossible to study the activities of bugs that could not be persuaded to grow in the laboratory, so we were obliged to just give up and concentrate on those that could. But now, the genome sequences of individual microbial cells can be determined, analysed by clever algorithms, and metabolic models generated that predict potential activities of the sequenced bugsSo Professor Geisterbahn teamed up with a hot‐shot single cell genomics group at the Cajun‐Bayou University of Southern Louisiana, headed by Leonie Broussard and HawioviMs. Repor‐Tastory: Wow: not so ephemeral!Dr. Noitall‐Most: Absolutely! And so equipped with the morphology of the vegetative cells, the phylogenetic information given by the genome sequences, and the metabolic features bioinformatically predicted from the metabolic construction analyses, Mabriella and Ranfredy were able to propose proper names for most of the ghostbugsWraithia terrifyingi, Poltergeistas bansheea, Spookia bogeymanaHauntio scariae, Phantomius miragilis, Shroudia frighteningi, and the fungus Spectormyces creepii. We can see images of some of these on the screen:Spookia bogeymana, 2: Phantomius miragilis, 3: Poltergeistas bansheea, 4: Hauntio scariae, 5: Shroudia frighteningi, 6: Wraithia terrifyingi. v and s indicate vegetative forms and spores, respectively1: Ms. Repor‐Tastory, squirming on her chair: Golly: ghost microbes look rather threatening!Dr. Noitall‐Most: Yes, they have unusual, somewhat sinister cellular forms. Anyway, let's return to the genomic analysis, which is really fascinating. Firstly, all genomes of GAB were fairly small, which was not too surprising, given the fact that GAB probably don't do much most of the time. And: although most of the genomic information deciphered was rather routine, all of the new microbes had several unusual features in common, such as a minimal, low energy – so‐called Spartan or scavenger – metabolism, with lots of high affinity uptake systems for nutrientsMs. Repor‐Tastory: Ok….do forgive me, but this does not seem super exciting.Dr. Noitall‐Most, signalling ever‐so‐slight irritation: Well, sorry, but not all important scientific results are exciting to the uninitiated!Ms. Repor‐Tastory, slightly chastened: Yes, of course: do please continue.Dr. Noitall‐Most: Hhmmm: well, in addition, the ghostbugs unexpectedly had gene clusters for the production of so‐called gas vesicles, essentially large air bubbles which are normally found in microbes inhabiting salty water bodies, and that allow them to control their buoyancy in order to migrate up and down in order to find environmentally‐optimal conditions for their growthMs. Repor‐Tastory: Interesting, but why would GAB make air bubbles?Dr. Noitall‐Most: Well: this is admittedly rather difficult to understand. However, Leonie made some assumptions about the metabolism of GAB, which allowed her to propose that they could make methane and/or ammonia, which are both lighter than air. If the gas vesicles contained either of these instead of air, and if they were airtight, ghostbugs themselves could be lighter than air. Professor Geisterbahn therefore concluded that the gas vesicles in GAB facilitate the floating appearance of their otherworldly hosts on their evening passeggiata. I should, however, remark that the plausibility of this hypothesis has been ridiculed by several experts.Ms. Repor‐Tastory, blinking quickly: Well, I never!Dr. Noitall‐Most: Another unusual characteristic of the genomes was the presence of tandem genes for green, blue and red fluorescent proteinsMs. Repor‐Tastory, hands involuntarily leaping to her mouth: Oh my goodness: what next?Dr. Noitall‐Most, coolly resisting the urge to participate in the drama build‐up: Another unexpected finding of the genome analysis was a pathway for an unusual form of melaninmolecules of keystone significanceMs. Repor‐Tastory, hands covering mouth: Oh my giddy aunt! So movie depictions of the light‐shyness of otherworldly beings is justified and ghosts do prefer their environments to be as black as Newgate's knockerDr. Noitall‐Most: Well, perhaps, but let's not get carried away! And talking about movies: in some popular depictions, ghosts leave behind unpleasant trails of slime ‐ so‐called ectoplasmMs. Repor‐Tastory: So ectoplasm is Hollywood fiction?Dr. Noitall‐Most: Yes, and pretty typical of the film industry. However, the most fascinating finding of the genome scanners was the presence of ice nucleation proteinMs. Repor‐Tastory, shifting uncomfortably in her chair: OOOOHH! And what might the ghostly role of INP be?Dr. Noitall‐Most: Well, Abi: at present, we can only speculate because ghosts are currently not part of the microbiologist's experimental repertoire. But, if we step into the still very much disputed framework of the existence of ghosts and ghost microbiomes …..and if we allow our imagination to roam freely…..and if we recall that people viewing ghosts in cold situations often experience sudden shivery chills on exposed skin, even when their bodies are wrapped up warmly, then we might interpret this as ice crystal‐loaded microbes shed during the passage of the ghost drifting onto the exposed skin of the observer, which will definitely induce an otherworldly chilling sensation. And: we should keep in mind that some people report that, when they have had a more or less direct contact with a ghost, i.e. they have been directly on its walkabout trajectory, and not been able to jump out of the way, they have experienced a damp, cold sensation as the spirit brushed by, like walking into a heavy cold mist.Ms. Repor‐Tastory, shivering: Oh: I am beginning to feel the chill right now. I think we better take a short break and a long stiff drink to fortify us for the next part.Ms. Repor‐Tastory, slightly flushed: Welcome back viewers to this absolutely fascinating, if somewhat disturbing topic. But before we return to the story, Ani, tell me: how can you discuss these frightening things in such a relaxed fashion?Dr. Noitall‐Most: Well: I personally do not believe in ghosts, though I have several relatives who do and claim to have actually seen them. But of course, as a scientist, I cannot disprove their existence, either. The thing is: I have never encountered one and, if I do, I do not expect to be harmed by it. How many deaths or injuries caused by ghosts were documented last year? And are we frightened by smoking or driving, despite their associated frightening annual death rates? Have you ever flown to Geneva in Winter and, instead of catching the coach directly to the ski slopes, taken the bus downtown to buy a little frock or bauble for a special après ski, and observed how many people are walking around on crutches, all in name of pleasure/healthy pursuits? No: I do not feel uncomfortable discussing ghosts and their microbiomes.Ms. Repor‐Tastory, brightening up: Gosh, yes, isn't downtown Geneva a paradise for shoppers, especially those who love handbags. I remember one occasion when I was with this incredibly well off broker….(angry noises coming from the in‐ear headphone), oh sorry – you were saying?Dr. Noitall‐Most, dreamily: Yes, and the fantastic chocolate boutiques…..! But to return to the here and now or, rather, the otherworldly there and then, Mabriella and Ranfredy were frustrated that the only information on GAB was bioinformatic in nature: there was no physiological data. So, after some in‐house brainstorming, they had a nice idea. They isolated individual spores by micromanipulation, using the protocol of Leonie and Hawiovi, and placed them on GORM containing radioactive precursors, to allow preliminary assessment of intact metabolic functions, by a new technique called high resolution single cell metabolomics, or SICMICS. They then shared with Leonie and Hawiovi their new information, which corroborated a number of the key bioinformatic predictions, and allowed significant refinement of their metabolic models. One important conclusion of the modelling, and now confirmed by the experimental data, was that all GAB lack one or more essential functions for reproduction – they do not have a complete minimal genome – the minimal complement of genes needed for growth and reproductionMs. Repor‐Tastory: Well, in that case, I do not understand how they exist, if they are not able to perpetuate themselves.Dr. Noitall‐Most: An excellent point, Abi! The thing is that there are many microbes out there that lack essential functions for an autonomous existence: they are called auxotrophsMs. Repor‐Tastory: Ok, GAB are social beasts, like other microbes – I can understand that – but then another question. If ghost bugs are spores, which are dormant forms and hence inactive, how can they produce the proteins identified by Leonie and Hawiovi, especially those creepy damp chill proteins?Dr. Noitall‐Most: Another excellent question, Abi! This is due to the fact that members of populations of microbes exhibit physiological heterogeneityMs. Repor‐Tastory: I see. So where does all this leave us?Dr. Noitall‐Most: Well, of course, Dr. Geisterbahn was highly excited about the results, and immediately posed the next big question: where do ghost bugs come from? Do ghosts carry part of their old microbiome with them after death of their earthly form, or do they acquire a new, ghostly microbiome?th century princess had been recently discovered in an abandoned decaying castle in Romania, and was duly recruited into the study cohort. As controls, mummies of individuals thought to have been happy souls, enjoying peaceful, non‐violent deaths, and lacking any reports of post‐death ghostly appearances, were selected.To answer this, it was necessary to compare ghost microbiomes with original skin microbiomes. This is obviously not a trivial task, but Professor Geisterbahn is an imaginative and energetic soul, and decided to investigate mummies. Important in the selection of study objects was that the bodies of the deceased had not been washed or otherwise treated, so mummies that had been produced by ritual procedures were unsuitable. However, there are a number of examples of naturally mummified bodies not subjected to any known human intervention after death and still wearing the original clothing sported prior to expirationAnyway, to cut short a long story of a complicated and logistically‐challenging study, comparison of the sporomes of the ambient dust, skin and original clothing remains, and ghost paths, revealed no significant differences between the skin and clothing microbiota of ghostly and non‐ghostly mummies, and no ghostbugs in them, though GAB were readily found in the ghostpaths.Ms. Repor‐Tastory: So where on earth do GAB come from?Dr. Noitall‐Most: Well, Abi: this is of course the 64 million dollar question. If they are not part of the skin microbiota of the original body, they must come from somewhere else: it seems that ghosts, once they decide to become part of our earthly experience, acquire a unique microbiome. But from where? As you know, there have been a number of large scale campaigns to assess and access microbial diversity, and currently there are major international efforts to obtain a comprehensive global inventoryMs. Repor‐Tastory: So they come out of thin air?Dr. Noitall‐Most: You jest, of course, but in fact this is precisely what Professor Geisterbahn and various members of the paranormal community propose: that in fact the ghost is the link between the world you and I know and love, and another parallel world inhabited by..well. who knows what, but perhaps including the ghostbugs. Of course, microbial ecologists always say: wherever life is possible, microbes will be there. But I am not sure if they would include paranormal habitats in their conceptual frameworks. However, Professor Tim Kennis of the Queenton Institute for Advanced Study has advanced the view that current and past metagenome studies only detect microbes present in samples in numbers above a certain threshold, and that so‐called rarefactiononly work well when no taxon is extremely rare, so reliance on them to claim complete diversity coverage is unwarranted. He postulates that there is a fascinating world of as yet undiscovered microbes present in vanishingly small numbers in most environments, the so‐called ultra‐rare biosphere or, perhaps more appropriately in the case of ghostbugs, biological darkest matterMs. Repor‐Tastory: So, if I understand you correctly, ghostbugs might be everywhere, not just on ghosts?Dr. Noitall‐Most: Yes, this is entirely possible, though pretty much all microbes have preferred habitats or, since they are so small and their immediate environments are also tiny, microhabitats. So, even if ghostbugs are everywhere, Professor Geisterbahn would probably argue that their natural habitat is the ghost, and this is where they are to be found in the highest numbers. The thing is: the discovery of new microbes often results from the exploration of new habitats, as was the case with the discovery of ghostbugs. Since some GAB are distantly related to Gloamingia shiveri, the vampire bat microbe, the team's current hypothesis is that GAB are ultra‐rare members of communities of the vampire bat microbiome and are right now taking samples from vampire bats and the dust of bat caves at various sites around the world, to analyse by ultra‐deepest metagenomics sequencing.Ms. Repor‐Tastory: Ok, Ani: to make full circle and come back to the exciting research currently taking place on the microbiome of the built environment: what do the experts think of all the ghostly stuff?Dr. Noitall‐Most: Oh, of course, most are highly sceptical. For example, Kennis has stated that, while he considers the results obtained by the German and American groups to be reliable and to constitute a significant advance in accessing and characterising rare microbial diversity, he is totally dismissive of the ghost context and views it as absurd, nothing more than hand waving. He says that, even for those folks who might not discard the possibility of the existence of ghosts, all studies so far are way too preliminary, based on small samples yielding results that do not allow meaningful statistical analysis, and lacking in scientific rigour. Most importantly, they only give correlations and, given the nature of the study objects, the establishment of causalities will be impossible.Ms. Repor‐Tastory, looking relieved: Ok, on that reassuring note, to bring this program to its end, let me pose my usual question: are there any applications emerging from this research?Dr. Noitall‐Most: Yes, Abi, there certainly are, especially in the domain of space travel.Firstly, efforts to understand what biological functions are essential for life have so far mostly concentrated on analysis of the minimal genome essential for vital activities and reproduction. Now, however, the focus has shifted to what functions are needed for dormancy, since voyages to outer space will take decades, and normal life will not only require impossibly large payloads of food and waste disposal systems, but also result in arrival of very aged if not long‐dead astronauts, or, equally problematic, astronauts completely insane from decades of continually talking about the weather back home, playing Sudoku and repeatedly watching repeats of Top Gear and Big Bang Theory. So the only option is to make them dormant, and the study of the metabolic wherewithal of GAB has now taken centre stage. Interestingly, a number of health companies are also investing heavily in this type of research because they foresee a highly lucrative business in inducing dormancy in, shall‐we‐say, rich‐to‐super rich customers with currently untreatable health issues, until effective cures have been developed. These companies believe that a procedure to induce dormancy will replace the deepfreeze option currently on offer to this type of clientele.Also in the realm of space travel, there is a lot of activity exploring the radiation‐protection properties of various melanins based on SM, because spacecraft and their occupants are subjected to substantial amounts of hazardous radiation, once out of the Earth's atmosphereMs. Repor‐Tastory: Oh, marvellous! I just love lazing in the sun, but it does wreak havoc with my skin, especially that on the more protruding parts of my body, so a better protectant to those currently available will be a wonderful thing.Dr. Noitall‐Most: Oh, absolutely! And while on the topic of protection, there is an established application relating to ice nucleating bacteria, namely the use of a non‐ice‐nucleating bacterium called Pseudomonas fluorescens A506 to outcompete, that is, to chase away, ice nucleating bacteria from crop plants and thus reduce frost damage in affected farming regionsMs. Repor‐Tastory: Wow: this is just amazing!Dr. Noitall‐Most: Yes – without knowing it, we all are exposed in diverse ways to ice nucleating bacteria – they are on the salad plants and frozen foods we consume, the rain that falls on us when we forget the umbrella, the snow we eat after our snowboard clips a rock when we become distracted by thoughts about our competitors at work, ex‐boy/girlfriends, an incoming selfie on the smart phone, and so on.Bacillus subtilis cell factory for the high‐level production of SM, and variants of this melanin, which can be applied as sort of radioprotective skin for coating spacecraft and for incorporating into astronaut accoutrementsIn terms of other applications of ghostbug research, two very exciting synthetic biology projects are currently underway at the Lorenzo von Syntech High Security Institute for Artificial Life in Madrid, headed by the world‐renowned Professor Vic Torde. One is to create a Ms. Repor‐Tastory: But isn't there a possibility that a microbial Frankenstein will be created?Dr. Noitall‐Most: Good question, Abi! In fact, Vic is very conscious of this possibility and his colleagues will therefore simultaneously engineer into GAB study objects conditional lethal genes that will only allow the new bugs to survive under special, restrictive laboratory conditionsMs. Repor‐Tastory: Well, I have the feeling that this program will fuel a lot of thought and discussion. The possible existence of ghosts is obviously a matter more contentious now than before; I guess the microbes, as always, are keeping all options open. In the meantime, thank you, Ani, for this highly interesting expose, and thank you viewers for joining us for this episode of ‘Microbiome Discoveries that Change our Lives’.None declared.


Substantial challenges have been reported in China in terms of the large number of adult patients with strabismus and their poor quality of life. Quality of life is a cultural concept that varies according to personal feelings and perceptions, and it is influenced by physical, psychological and social factors. However, to date, there has been no mixed-method research of the quality of life of Chinese adult patients with strabismus, and no conceptual model has been reported. This study aimed to utilize mixed methods to explore the influence of strabismus on health-related quality of life in Chinese adult patients and to develop a conceptual model.x2 test were conducted.Thirty adult patients with strabismus from three tertiary hospitals in China participated in the interview. In-depth one-to-one interviews were semi-structured and addressed strabismus-related symptoms and the impacts on the participants’ quality of life. Transcripts were analysed to identify themes. A self-designed questionnaire was distributed to 448 patients, 437 of whom returned valid questionnaires. Descriptive statistics and n ≥ 70%) rated by the participants were monocular vision, eye fatigue and physical discomfort. Compared to those without diplopia, the patients who suffered diplopia more often reported experiencing the symptoms of blurred vision, monocular vision, physical discomfort, eye fatigue, cannot estimate depth well and increasing deviation size .Five themes were revealed regarding the impact of strabismus on patient quality of life: appearance, daily activities, personal development, social interaction, and emotions. In the survey, the top three symptoms (This study is the first to examine quality of life among Chinese strabismus patients using both qualitative and quantitative methods and proposing a conceptual model. Symptom burden and appearance were the two original reasons for the decreased quality of life, and they were also the triggers for strabismus patients to visit clinics and undergo surgery. The interventions to treat symptoms burden should be different between patients with and without diplopia. The concept of health-related quality of life (HRQoL) has attracted increasing popularity as an important patient-reported outcome, as it originates directly from individuals regarding their perceptions and feelings about health status . The repA number of previous studies have demonstrated the reduced HRQoL in adult patients with strabismus, using either a qualitative or quantitative research design. A survey of the negative impacts of strabismus on patients older than 15 years was first reported in 1993 , and it WHO defines QoL as “an individual’s perceptions of their position in life in the context of the culture and the value systems in which they live, and in relation to their goals, expectations, standards and concerns” . Thus, cTherefore, this study aimed to utilize a mixed-method to explore QoL in adult patients with strabismus who are living in the southwest of China and, thus, to inform the development of a conceptual model regarding QoL in strabismus. We anticipated that the conceptual model could provide readers a visual picture that clearly delineated the various concepts that were associated with the strabismus-specific QoL and represented links between the concepts. Moreover, the conceptual model could serve as a framework for ophthalmologists from which potential health intervention targets can be selected. Third, the model was expected to guide researchers’ choice of what to measure and provide a context for how to interpret the findings. Conceptual models of the impact of strabismus on patient HRQoL have not been published to date.To capture a full picture regarding the quality of life in adult patients with strabismus and to develop a conceptual model, we conducted a mixed-method study. First, a qualitative study adopting one-to-one semi-structured interviews was performed. This descriptive exploratory approach aimed to explore a deep and cultural understanding of the feelings and experiences of the targeted population. Then, a self-designed questionnaire was distributed among a purposive convenience sample of adult patients with strabismus at three tertiary hospitals, which aimed to collect quantitative data to confirm the links between the themes that emerged in the in-depth interviews.The in-depth face-to-face interviews were performed between May and July 2014, and the survey was conducted from June 2014 to Jan 2015 among adult patients with strabismus from three tertiary hospitals in the southwest of China. Strabismus patients who met the following inclusion criteria were recruited: (1) 18 years of age and older, (2) no previous strabismus corrective surgery, (3) no history of any eye-related surgery, (4) able to express themselves well, and (5) able to provide informed consent. Patients were ineligible if they had facial or ocular abnormalities or acute eye diseases that might have interfered with the study results. For the interview, the patients were purposely selected based on their demographic characteristics and clinical features to produce a heterogeneous sample. For the survey, all patients who met the inclusion criterion were invited by ophthalmologists or nurses. General information, including demographic data about age, gender, education, and socioeconomic status, and clinical features about types of strabismus and diplopia were recorded.For the survey, we adopted a self-designed questionnaire, based on the preliminary interview results. Two-rounds of the Delphi expert consensus method were used to evaluate the content validation of the questionnaire. The questionnaire included 10 items evaluating strabismus-related symptoms and 24 items regarding four aspects on the negative impacts of strabismus on QoL. The four aspects were appearance, daily activities, personal development and social interaction, respectively. A 5-point Likert-type rating score was utilized for each item. The lower the score, the greater the severity of the symptoms and impacts.A participant information sheet and verbal explanation were given, and all participants signed informed consent before the interview. The interviewer did not participate in the patient treatment, and participation (or not participating) did not impact the patients’ treatments. Confidentiality was emphasized to ensure individual participants could not be identified through quotations and descriptions. A code name was used to represent each participant to protect their privacy. Ethical approval was obtained from the human ethics committee of the Amy Military Medical University. The data were collected in accordance with the Code of Ethics of the World Medical Association .Following a literature review on QoL conceptual framework and HRQoL within strabismus patients, a semi-structure interview guide was developed specifically by the research group in consultation with an advisory group consisting of nursing experts on qualitative study, a senior ophthalmologist and head nurses specialized in strabismus. Interview questions were organized to explore participants’ experience in terms of five dimensions: (1) strabismus-related symptoms, (2) the impacts of the symptoms on participants’ studies, daily activities, career and social life, (3) strategies to cope with the impacts, (4) perceived barriers and facilitators to strabismus-related quality of life, and (5) participants’ needs to improve strabismus-related QoL.All interviews were conducted by the first author, who had received practice training for interviewing techniques. All interviews were held in a waiting room where privacy and comfort were guaranteed. Each interview was conducted face-to-face at a time convenient for each individual participant and audio-recorded with participants’ permission. Interviews varied in duration from 30 to 60 min. At the start of each interview, the purpose of the study was explained using information statements, and written informed consent was obtained from each patient before participation. An open-ended question was first asked to inspire spontaneous brainstorming of strabismus-related experiences, to avoid the introduction of bias into the data. Meanwhile, elaboration and clarification probes were used on areas of interest to encourage participants to provide in-depth descriptions of their experiences and to explain and clarify their responses to questions . Before the end of the interview, the participants were debriefed by the interviewer and invited to take part in a post-surgery interview.An invitation was given by ward nurses to eligible adult strabismus patients to fill out the questionnaires. After giving verbal and written instructions, the participants who agreed to take part in the survey were left alone in a waiting or treating room to complete the questionnaire.All interview recordings were transcribed verbatim. Researchers listened to the recordings and read the transcripts repeatedly to ensure accuracy and to include relevant information from field notes . The thematic analysis of the transcripts was conducted manually by two researchers, ZW and JZ. After the first three interviews, we constructed a start code book of broad categories, using both inductive and deductive approaches. An inductive reasoning allows the categories and themes to emerge as reading of transcript proceeds, while a deductive reasoning allows a further examination of the categories and themes, in relation to existing theory. Therefore, the study categories were generated through repetitive reading of the transcripts and by referencing the categories and themes addressed in the interview guide. ZW and JZ then independently coded the data for the remaining transcripts and discussed until agreement was reached. During analysis, we kept the possibility open to add any additional categories. All coded transcripts were reviewed multiple times, and new codes were added as appropriate and others were lumped together into broader categories. Saturation of themes was reached prior to the completion of 27 interviews; however, the interview continued to ensure a diverse sample, in terms of the patient demographics and disease features.x2 test between the strabismus patients with and without diplopia. All statistics were two-sided and fixed at a 5% level of significance.The software of Statistical Package for the Social Sciences  was adopted to analyse the numerical data. A descriptive data of headcounts and percent was produced regarding demographic information and clinical features. The differences on the reported symptoms were compared using the n = 12) and middle-aged adults (n = 13). The participants predominately had a low education background of secondary school and below. Approximately one-third of the participants were unemployed. Two-fifths of the participants suffered from diplopia.Thirty patients with strabismus participated in the semi-structured interview. As shown in Table The questionnaires were distributed to 451 patients; and a total of 448 questionnaires were returned, with a response rate of 99.3%. Eleven of the questionnaires were not fully completed (missing data ≥30.0%). Thus, 437 (97. 5%) questionnaires were valid for further statistical analysis . Table n ≥ 50%) were blurred vision, monocular vision and physical discomfort . Other common symptoms included eye fatigue, cannot estimate depth well, increasing deviation size, loss of sight on one eye, sensitive to light, and compensatory body posture. Less than 15% of the patients reported the symptom of limited visual field. Compared to those without diplopia, the patients who suffered diplopia reported more often reported the symptoms of “eye fatigue” (p = 0.02) and “cannot estimate depth well” (p = 0.02).A list of the primary symptoms experienced by the interviewees is shown in Table n ≥ 70%) rated by the participants were monocular vision, eye fatigue and physical discomfort. Compared to those without diplopia, the patients who suffered diplopia reported more often reported the symptoms of “blurred vision”, “monocular vision”, “physical discomfort”, “eye fatigue”, “cannot estimate depth well” and “increasing deviation size”   Table .Table 3SFive themes were revealed regarding the impact of strabismus on the patients’ HRQoL: appearance, daily activities, personal development, social interaction, and emotions. The conceptual model was developed according to the Wilson and Cleary model for health-related quality of life . In-dept“The most significant impact for me is appearance. Two eyes are not symmetrical. I cannot even look at myself in a mirror.” “The only reason I came here is to correct my eyes. I am not expecting to improve my eyesight anymore.… I never or seldom take a photo because I do not like my appearance, and I do not want to give others a chance to laugh at my eyes when they look at the photo.” “I wanna become beautiful. I wanna look like a normal person. My parents did not allow me to have surgery at first. But when they realized that my appearance has deeply influenced my chance of getting a job and having a relationship, they finally agreed.” Due to asymmetry in eyes, over two-thirds (76%) of the participants mentioned the negative impact of strabismus on appearance; this impact was mentioned spontaneously by several participants, without being prompted. Participants also reported avoiding looking into a mirror or taking a photo because of feeling inferior about their appearance. This dissatisfaction with appearance reduced the participants’ chance of getting a job or finding a partner; therefore, undergoing cosmetic surgery to correct unsymmetrical eyes was the top reason for young adults with strabismus to seek medical help.“My two eyes cannot focus on one point, so I often missed the hook that I was trying to hang something on. I thought that I had the right directions, but actually I missed the target….I gave up playing badminton and ping-pong since I cannot locate the ball exactly. It is also a pity that I am not allowed to drive a car.” “It is very inconvenient and dangerous for me to ride a motorbike. There was a time when I was riding a motorbike; I suddenly saw two cars appearing in front of me. I fell down because I wanted to escape them. But then I found there was actually only one car. I saw two because of my double vision. This kind of thing happened several times.” “I lost eyesight in my right eye. I have to depend on my left eye. … Since you can only use one eye to see, you feel like that the ground was uneven while you are walking…If a step was not marked, I might miss it and then fall. The biggest potential danger for me is falling.” “I am so fond of sewing, knitting and embroidery. Now I have to abandon them due to my strabismus.” Symptoms, such as poor depth perception, eye fatigue, double vision and limited visual field have a substantial impact on patients’ daily activities. Most of the complaints were about having difficulties with activities, such as cooking, doing sports, driving, watching TV, and reading newspapers. Nine interviewees described failing to enjoy hobbies due to double vision. Some participants (30%) complained that double vision and poor eyesight were risk factors for falling and unintentional injuries. Over half of the male participants were upset about that they could not drive. Some were not allowed by law to obtain a driving licence, while others had to quit driving for safety reasons.“My life would be different if my eyes were all right. When I was young, I was fond of and good at physical sports. My dream was becoming a physical education teacher. But I failed to enter in a sport college because I lost my eyesight in my right eye.” “I had a strong willingness to study. I deeply understood that studying would change my life. But I had to drop out of school since I failed to see the words written on a blackboard, even sitting in the first row. …I often quit opportunities of continuous education. It is troublesome to travel around with my poor eyesight. Besides, I know that more learning is no help to my job, since my eyes have already limited my career development.” .“I can tell you that no one would like to employ me as a waitress. I can only be offered a job as dishwasher, because no guest will notice my eyes when I hide in a corner to do washing. … Besides, I was often misunderstood by employers that I had poor eyesight; but actually, my eyesight is quite good.” “The main reason I came here for a surgery was that I wanna update my driving licence, from driving a shuttle to driving a bus. But my application was denied because of my strabismus. I need to correct my eyes before I re-submit an application. …If my driving license cannot get updated after the surgery, I will probably run a small business so I can avoid the stigma from other employers.” Most participants (76%) discussed the limitations on personal development, in terms of educational and occupational opportunities. Seven interviewees mentioned that they could not choose a major that they would like to study, and half of the participants discussed the experience of not being treated equally when applying for a job position. Seven participants expressed their concerns about their working abilities, including difficulty finding work, reduced working hours and slower work speeds than people with normal eyesight. Three participants regretted that they had to abandon job promotions because of the low self-efficacy associated with strabismus.“I think I am a lucky person. I am divorced and I am disabled on eyes, but everyone I encountered treats me well. I do not know whether this is because of my eyes. They sympathize with me, so they treat me well. Anyway, I still feel lucky. But I reduce the time of going out with them because I did not want to cause them too much trouble. I am a disabled person. I am different from them.” (Mrs. L)“Other women will misunderstand and suspect me. When I talked to a woman while her husband by her side, she thought I was looking at her husband in a sexual manner. Actually, I was not. I was looking at her! But my eyes were squinting, and it looked like straight to her husband.” “If I wanted to see things clearly, then my eyes were squint; if I controlled my eyes in orthotropic position, I failed to see things clearly. I did not want my friends to know that I had strabismus, so I preferred to control my eyes in an orthotropic position rather than seeing things clearly…. Then trouble comes. When a friend was walking and waving toward me, I could not see him. He thought that I was looking down upon him. But you know, I was not. I just could not see him when I tried to keep my eyes in orthotropic position.” “I felt so lonely because I could not find someone look like me. I did not know where I should go to talk about my unhappiness associated with my eyes. I went to internet and blogs. I joined a “disabled group”, trying to find someone who could understand me.” (Mr. E)More than 20 participants showed a strong willingness to get involve in social activities, and they regarded the interaction with family and friends as a main source of happiness and life satisfaction; however, having strabismus had caused the interviewees to reduce or even avoid having social lives because of the social discrimination associated with strabismus, which normally presented in three manners: teasing and mocking, being misunderstood, and being hidden. First, it was common for strabismus patients to be mocked and teased by classmates, colleagues, teachers, and strangers. They were given awful nicknames due to strabismus. Seven participants experienced an updated conflict of quarrelling and fighting because they failed to tolerate tease or mock. Second, over one-third of the participants (36.7%) complained that their asymmetrical eyes were misunderstood as being unfriendly or impolite when they failed to control their eyes in the same direction. They tried to look straight at the people they were talking to, but their eye balls just went moved upward or to the other side. Third, five interviewees mentioned that they were hidden by others to avoid interpersonal activities with the strabismus patients. They assumed that it was because that strabismus was regarded as a kind of physical disability and that their appearance frightened others.All participants discussed the negative emotions resulting from strabismus. The emotions that most commonly complained were anxiety, sadness, and inferiority. Other emotional impacts were reported including angry, embarrassment and irritability.“My strabismus is getting worse and worse, and I am worried about losing eyesight. But speaking of the (corrective) surgery, I am also afraid of infection after the surgery. I kept worrying since eyes are important organs. I have no idea of what my life would be like if I lose my eyes.” “Currently the only thing I am worried about is that I cannot find a girl to get married. I mean, because of my eyes, I do not deserve a nice wife.” “People will look down upon you because of my eyes. When people around you keep saying that you are “monster” “freak”, when they kept laughing at you, you would feel inferiority in the end.” The anxious feelings came from four aspects: (1) worrying that the strabismus was getting worse, such as increasing deviation size and decreasing eyesight, (2) worrying that corrective surgery might cause blindness; (3) worrying about family or work affairs while taking surgery, (4) worrying about the negative impacts of strabismus on life . The feelings of sadness and self-inferiority resulted from the disability of eyes and the tease associated with strabismus from others.r = 0.336~ 0.567, p < 0.05), except for the theme of “appearance”  (Table p < 0.01) , “daily activities”  and “personal development”    Table . The sco1) Table . The theχ2 = 5.63, p = 0.02) and the failure to estimate depth well  , monocular vision , physical discomfort , eye fatigue , failure to estimate depth well  and increased deviation size .Adult patients with diplopia reported significantly more negative symptoms compared to those without diplopia. The qualitative data revealed that strabismus patients with diplopia complained more than those without diplopia about eye fatigue (The study examined the impact of having strabismus on patients’ QoL through qualitative interviews and cross-sectional survey, and accordingly, a conceptual model was developed from the patients’ perspectives Fig. . The modThe management of symptoms should be considered when treating adult strabismus patients. The participants in the study reported a high level of disturbing symptoms related to strabismus. The symptoms burden of blurred vision, monocular vision, physical discomfort in eyes and eye fatigue were commonly complained. As the conceptual model shows, although the symptoms burden was not directly responsible for the declined strabismus-related QoL, the symptoms did negatively impact the patients’ daily activities, personal development, emotions and social interaction, which consequently contributed to the declined QoL. The findings were consistent with those of previous studies. Simonsz and colleagues  have colThe apparent impacts of strabismus symptoms on QoL may also explain why QoL could be significantly improved after a strabismus surgery. According to our conceptual model, it was reasonable to assume that physical and psychosocial functions and overall QoL could be greatly improved after the relief of strabismus symptoms. This hypothesis has been proven by a series of previous studies that strabismus surgery could diminish or at least alleviate strabismus symptoms, and further improved patients’ psychological and functional outcomes , 25, 26.An increasing number of studies have found a distinction between patients with and without diplopia, although a number of common concerns were reported across the two groups. It was revealed that adult patients with diplopia predominantly reported physical disabilities and difficulties in vision-related functions, such as fine work and driving, while those without difficulties showed more concerns about appearance and psychosocial functioning . AccordiAs shown in the conceptual model Fig. , symptomTo the best of our knowledge, this study is the first to examine quality of life among Chinese strabismus patients by using a mixed-method approach, and based on the results, we proposed a conceptual model. The conceptual model was expected to provide readers a framework about the various concepts that were associated with the strabismus-specific QoL and the links between the concepts. Moreover, it could enlighten the potential targets to develop interventions to improve QoL.As shown in the study, symptoms burden and poor appearance were the two primary reasons for the declined QoL in patients with strabismus, and these two factors were also the triggers for patients undergoing surgery. Therefore, eliminating strabismus-related symptoms should be addressed first when improving QoL. In addition, more consideration should be given to patients with diplopia.


Being “fair” is often a desired goal when individuals are planning for financing future care, leaving an inheritance, and selecting an attorney-in-fact for financial and/or health care. However, differing perceptions about the fair use of an older parent’s resources , and issues of who can or should be involved in decision processes, can lead to avoiding planning and be a source of family conflict. The complexities of fair decision rules for distributing resources, and important criteria for determining fair decision processes will be discussed, guided by interpersonal social justice theories, and findings from a qualitative study of inheritance involving older adults and adult children from the same family system (N= 18). Implications for helping family members, and professionals working with them, navigate “being fair” and increase later life planning will be shared.