It forms part of a view that aspires to extend some of Frege’s  insightsIn contrast to this representationalist orthodoxy, relational views characterise perceptual experience in terms of a primitive non-representational relation to external objects, facts or events. While both Naïve RealistThis special issue focuses upon the debate between representational views and these emerging relational views of perception. In particular, we aim to shed light upon the commitments and motivations of the latter which, being historically more recent and less widely held, have all too often been poorly understood by their detractors, many of whom have taken such views to be wildly implausible, incompatible with current scientific theory, or simply inscrutable. Indeed, for those steeped in the representational tradition, it can be difficult to understand why one might want to deny what may seem an obvious truth about perceptual experiences: that they represent how things in the world are. Furthermore, it is unclear that representational and relational views should be considered mutually exclusive, since relationalism need not be formulated in terms of the denial of representational content, and nor do these options exhaust the field.We aim to elucidate relational views of perception in a way that facilitates a more nuanced debate . Other contributions explore the phenomenal character of experience and its explanatory role , and reappraise existing arguments both for (Brogaard) and against  relational views. We hope that this goes some way towards demonstrating that, far from being an implausible fringe view, relational theories constitute a significant and genuine attempt to overcome some central problems in the philosophy of perception, and, as such, are worthy of further consideration—not least by their opponents.representationalism, is that perception relates us to the world by representing it to be some particular way—for example, that some object instantiates specific properties. This makes experiences analogous to thoughts in that they have contents that are objectively, or possibly intersubjectively, evaluable for truth or accuracy. Such views have the benefit of unifying a diverse range of experiences, including hallucinations and illusions, with non-perceptual states such as thoughts, beliefs, desires, imaginings, recollections and intentional actions.The orthodox view of perception, which we will call intentionalism, which makes a stronger claim concerning phenomenal character (see below). The term ‘intentionality’ has its origins in scholasticism and was revived by Brentano . This view, known as  cf. Tye . As such cf. Tye , 2013a.In summary, representational views take many different forms, each reflecting the various roles that perceptual representation might play: individuating experiences, explaining or justifying the contents of beliefs, grounding the qualitative character of experience, and explaining the causal mechanisms involved in perceptual processing, to name but a few. Consequently, there are a wide variety of views that differ both in strength and in the kind of contents that they assign to perceptual states or episodes. These range from the mere attribution of representational content to perceptual states without any commitment to this constituting a fundamental characterisation of experience—a view sometimes known as the “weak content view” Brogaard : 2—to exprima facie compatible with at least some variants of relationalism, yielding the possibility of hybrid views. For example, one might agree that the phenomenal character of perception constitutively involves external objects while holding that experiences nevertheless possess, or may be associated with, representational contents.Despite frequently, and in our view somewhat misleadingly, being portrayed as a two-horse race, many  of the above views appear Relational theories of perception take veridical experience to involve a primitive, and hence unanalysable, metaphysical relation to external objects and their properties. While variants of the view differ as to precisely which objects or properties, facts or events, are admissible as relata of experience, they agree that the relational nature of perception contributes to, or determines, the phenomenal character of experience. Thus, while characterising perception in relational terms might appear to leave it open whether experiences also possess representational contents, in practice many relationalists oppose such content on the grounds that it fails to adequately characterise the fundamental nature of veridical perception Brewer , or thatRelationalists are motivated by a variety of methodological, phenomenological and epistemological considerations. An illustrative, though non-exhaustive, list includes explaining:i.The transparency of experience in a way that is least revisionary with respect to how experience strikes us introspectively Martin ii.The primacy of external objects and/or veridical perception in an overall theory of perception Brewer iii.ibid.)The relationality of perception in a way that avoids positing metaphysically problematic entities such as sense-data  of perception. Consequently, external objects are metaphysically constitutive of both experience and its phenomenal character.er Sect. , while ler Sect.  might beGiven the central role that relationalists assign to veridical perception, however, two of the most important challenges for the view concern how to account for perceptual illusions and hallucinations, respectively. Concerning the former, Brewer claims thatError, strictly speaking, given how the world actually is, is never an essential feature of experience itself.  or “misleading perception” . Others find the lack of a positive characterisation of hallucination unsatisfying.Hallucinations, on the other hand, are more challenging for relationalism, since these are precisely cases in which the subject is not directly related to any causally relevant external object. To explain such cases, relationalists typically adopt some form of Soteriou , 2016. ISoteriou , sense-dSoteriou , 2006 cashould not be, explained in the same way as veridical perception. Hence relationalists take the primary explanandum of a theory of perception to be veridical perception, and not perceptual experience more generally where this includes both veridical and non-veridical experiences, since the latter may require a different explanation that is dependent upon the former.It is important to realise that many disjunctivists identify an experience’s phenomenal character with the obtaining of a relation to the objects and properties that, on their view, constitute it. On this understanding of the term, an experience’s phenomenal character is individuated more finely than what can be distinguished from a first-personal perspective. Hence two subjectively indistinguishable experiences can possess different phenomenal characters in virtue of the fact that they involve the perception of distinct objects and/or properties. Moreover, since hallucinations do not involve direct acquaintance with the object, then strictly speaking, they lack perceptual phenomenal character in this sense of the term. This does not of course mean that such disjunctivists deny there is anything it is like to undergo a hallucination. Rather, they claim that the subjective character of hallucination and that of veridical perception do not share the same constitutive nature. In other words, perceptual appearances, or looks, are multiply realisable. It is therefore no objection to relational views that they fail to unify veridical and non-veridical experiences. Rather, despite the possibility of subjective indistinguishability, relationalism involves precisely the claim that hallucinations cannot be, and indeed sense-datum. This yields a form of indirect realism which, according to Berkeley . Thus, for Brewer, while computations on retinal images are “essential psychological enabling conditions” of our perceptual relation to external objects, they are not themselves objects of perceptual awareness. ’, Charles Travis addresses the question of whether representationalists are entitled to claim that perception furnishes us with a direct awareness of, or access to, environmental particulars, or whether representational content is itself problematically opaque. Framed as a continuation of his long-running debate with John McDowell , ms, whoresemblance and instancing, respectively. The former is a problem for Locke, who held that perceptual representations ‘resemble’ what they represent. However, since these representations, which are presumably grounded in physical properties of the brain, do not instantiate the perceptible properties that they attribute — roundness, blueness, loudness, and so on — “[w]e are left with no grasp of what resemblance in [Locke’s] sense might be”  or are post-perceptual (Travis’s view), with consequences for whether the resulting content is attributable to perceptual experiences or judgements, respectively. Here, Travis identifies a problem that is common to him and his opponents: explaining how the contents of perceptual judgements, if not of experiences proper, arise. The demarcation of perceptual and cognitive states, along with the nature and functioning of our recognitional and conceptual capacities, are thus central to this debate, the Fregean underpinnings of which are helpfully summarised in the final sections of Travis’s paper.Travis holds that experience merely While Travis and Brewer discuss where intentionalism and Naïve Realism sit with respect to the traditional debate about direct versus indirect realism, M. G. F. Martin sees the intentional approach as addressing the same concerns that were central to that debate, i.e. how objects determine the phenomenal character of experience. However, according to Martin, intentionalism does so in a way that widens the debate and renders the old dispute about the ‘direct object’ of perception outdated. With the introduction of the intentional framework, “the question now is not only which objects can feature in our experience, but how they can so feature” . AlthougThe opposition between direct and indirect objects of perception is substantial only if we find a connotation of ‘object’ that “appl[ies] to some, but not all, ways of exemplifying it”. Unfortunately, neither Moore nor Clarke are explicit about how this opposition should be understood, and more explicit distinctions, such as Jackson’s  “mediateClarke, on the other hand, concedes that seeing the surface of the tomato pre-empts seeing the whole tomato in determining the phenomenal character of the experience. Thus the only strategy that remains available to him to defend the claim that we do, under normal circumstances, directly see the whole tomato is to commit to the indeterminacy of facts about experience. He maintains that the claim that we directly see only the surfaces becomes true only in special circumstances where we restrict the application of the verb ‘see’. This shows how difficult it is to resist Moore’s conclusion once we accept that “there is nothing more to what we know of our sense experience other than what we can report in terms of what we see”. If one wants to avoid Clarke’s commitment to the indeterminacy of perceptual facts, one ought to provide an account that accommodates our initial intuition that, when we see the tomato, we do not see only its surface. Unlike sense-datum theories, intentional views are conservative with respect to the question of what objects we are aware of when we perceive. They make space for this by being revisionary with respect to the way in which objects are presented in perception. It is not clear that this is in accord with our initial intuitions about our experience of objects. Thus, whether intentionalists can rightly claim that their account preserves direct realism will depend on whether the introduction of representational content “leaves unchallenged what we all can initially claim about our experience”.As we have characterised them, relationalism and intentionalism purportedly offer competing accounts of the phenomenal character of experience Sects.  and 3. Margument from looks” (Wilson forthcoming), “in perception, things are not presented, or represented, to us as being thus and so. They are just presented to us, full stop” , Brogaard argues that we cannot fully explain visual phenomenal character without appealing to the notion of “perceptual seeming”. According to Brogaard, such “seemings” favour intentionalism over non-representational alternatives. Of course, anti-representationalists might in turn dispute whether “seemings” are wholly perceptual as opposed to being complex, partly epistemic states, as with Brewer’s ‘thick’ notion of looks Sect. . NeverthF is explained by its possessing “appropriate visually relevant similarities with paradigm exemplars of F” (F.ibid.).According to Brewer’s ‘Object View’ Sect. , an objers of F” , i.e. ob of F” F.. Due to thinly looks both red and white-in-red-light, but thickly only looks red, since this is the property that our visual systems typically register under normal circumstances. Brewer takes the central cases of perceptual registration to involve the application of a concept, but allows that there may be forms of registration, and so thick looks, that are non-conceptual. Interestingly, both of these cases can also be described in terms of the tokening of representational elements. Thus, Brewer’s theory accords with Brogaard in allowing a role for representational content in determining the phenomenal character of experience in the thick sense. Brewer argues, however, that this does not undermine the Object View’s claim to be a form of relationalism, since (a) it fundamentally characterises experience in terms of the subject’s relation to external mind-independent objects, and so as non-reducible to its representational content, and (b) the representational elements in thick looks are themselves dependent upon the obtaining of this perceptual relation.Thin looks alone, however, are insufficient to explain the phenomenology of figures like the Necker cube or duck-rabbit which appear to flip between different possible appearances. Nor do they explain why we tend to register some of an object’s similarities over others. A white piece of chalk illuminated by red light, for example, possesses visually relevant similarities to both (a) red objects under normal illumination conditions, and (b) white objects illuminated by red light. Yet, even given that looking white-in-red-light is a way of looking white, we would not ordinarily say that white chalk in red light “looks white”, except possibly in Chisholm’s  epistemiReference and Consciousness, John Campbell  Campbell , would aNaomi Eilan  challengThe alternatives are to opt for the second horn, or to reject the dilemma. Many defenders of representationalism about perceptual experience would argue for the latter option: to give consciousness a role within a representationalist framework. To test this, Eilan formulates a sceptical challenge for claims to the effect that perceptions have objective import, which is to explain what makes it the case that we perceive particular categorical properties rather than their structural equivalents. She argues that it can be met only by relational adoptions of the second horn of the dilemma, and in particular by those versions that appeal to Russellian acquaintance with mind-independent objects and their properties, where such acquaintance is conceived of as “knowledge of things” independently of “knowledge of truths”.The paper ends with a comparison between Eilan’s position and that adopted by phenomenal intentionalists  the sense that an object is real, or “sense of reality”, which is the central concern of their paper; and (ii) the sense that we are acquainted with the object itself rather than some surrogate or representation, which they call “sense of acquaintance”. To distinguish these, the authors consider studies on While the case of derealisation shows that experience can occur without a sense of reality, three other cases show that derealisation may occur without a genuine experience: (i) an experience, common in cases of Parkinson’s disease, in which patients report that they vividly perceive the presence of a person without seeing, touching, hearing, or smelling that person, who is not in fact there; (ii) recent studies on virtual reality suggest that increasing the realism of spatiotemporal content doesn’t correlate with an increased sense of reality, nor vice versa; (iii) certain forms of hallucination where quite unrealistic entities are experienced as part of the world, presenting a similar dissociation of sense of reality from level of realism of the content of experience. Such cases suggest that the sense that an object is present does not require that the object is perceived.reality-monitoring processes, and processes that control one’s spontaneous judgment of reality” (ibid.).Further to these empirical considerations, Dokic and Martin provide theoretical consideration for the claim that the sense of reality is not constitutive of perceptual experience. They suggest that the best explanation for this phenomenon is that it is an affective component, akin to a metacognitive feeling, “based on various reality” . With thIn addition to the kind of general philosophical considerations that Travis, Brogaard and others identify, a variety of empirical phenomena have been argued to count in favour of perceptual representation. Here, Michael O’Sullivan examines one such case from the psychological literature concerning the perception of numerosity.In visual perception, arrays of objects that are too numerous to subitize, i.e. immediately recognise or ‘see’ their quantity, appear perceptually distinct from arrays containing different numbers of objects. That is, they exhibit a distinctive “numerosity look” or appearance. An intentionalist explanation of these appearances would be that numerosity looks obtain in virtue of some property, or properties, that these experiences represent. According to Burr and Ross , 2012, fO’Sullivan argues that this apparent representational difference cannot be settled empirically because there is no fact of the matter as to which property is being represented. Indeed, we might equally well posit representation of a disjunctive property whose disjuncts include both numerosity and density in order to explain the phenomenal character of such visual arrays. Against the rejoinder that precisely this disjunctive property is represented in visual experience, O’Sullivan argues that at this point “the specifically representational features of the posited token mental state are no longer doing any work” . Thus, wO’Sullivan’s argument highlights the difficulty in offering representationalist explanations of perceptual phenomena to support the position in cases where alternative non-representational explanations are also available. A representationalist might respond to this by questioning whether O’Sullivan’s account generalises to cover more ‘primitive’ properties of visual experience, such as shape or colour, or to other sensory modalities. Alternatively, they might argue that the alleged indeterminacy reflects an epistemological difficulty in determining what the relevant representational content is, rather than raising a deeper metaphysical question concerning its existence. Finally, they might simply agree that perceptual content need not straightforwardly map onto our pre-theoretical intuitions about individual cases, while retaining the idea that experiences are nevertheless representational. Each of these possibilities raises interesting methodological questions concerning precisely how perceptual content is to be individuated, and its explanatory role in grounding or justifying belief.As a rule to which this collection is no exception, philosophers of perception have tended to focus upon visual perception in the (possibly misguided) hope that theories of vision will generalise to cover all of the other sensory modalities which one might take humans to have. Moreover, whilst the existence and individuation of perceptual content have been widely discussed, the processes that generate and operate upon such contents have received much less attention. In a welcome departure from both of these unfortunate tendencies, J. A. Judge examines whether the auditory phenomenon known as the ‘missing fundamental’, first highlighted by Helmholtz  and in wlooks as though it is following a rule”  by proximal stimuli . However, Judge argues that not only does the phenomenon of the ‘missing fundamental’ fail to constitute a clear candidate for the ascription of an inferential capacity, but that the notion of sub-personal inference is itself contentious and in need of further analysis. Following Boghossian , Judge models sub-personal inference on rational inference, or rule-following. According to Boghossian, such cases involve both causal and representational constraints, since in order to count as following a particular rule, the rule itself must (i) be represented by the subject, and (ii) form part of a causal explanation of why they carry out the relevant inference. As Wittgenstein observed, however, merely acting in accordance with a given rule does not establish which rule, if any, is being followed. Thus, Judge argues, in order for the notion of sub-personal inference to have explanatory value in the theory of audition, the auditory system must make use of “internally stored knowledge” Rock : xiii, o a rule” .per se.Here, one might argue that the kind of inferences that are involved in auditory processing do not require the sort of explicit representation of rules that is present in the case of rational inference. If so, however, the burden of proof surely lies with the defenders of inferentialism to elucidate precisely what notion of inference is involved. Moreover, if such mechanisms are sub-personal, then it is not clear how they can constitute evidence that experiences are representational, since the relevant representations do not occur at the conscious level. Without some further theory connecting sub-personal representation to the content and/or phenomenal character of experience, the notion of sub-personal inference remains the preserve of neuroscientific and psychological explanations of perceptual processing rather than experience The Contents of Visual Experience, Susanna Siegel . If Siegel’s argument depends upon the first notion of presentation, then it begs the question against relationalists like Travis  of perceptual representation, the nature of the perceptual relation, and the sense in which external particulars may be said to ‘constitute’ an experience’s phenomenal character, thus remain central and important tasks for contemporary philosophy of perception.


Limited attention has been paid to adolescents and young adults’ (AYA's) experiences in the aftermath of a cancer diagnosis, despite this being a time when potentially life-changing decisions are made. We explored AYA’s and caregivers’ experiences of, and views about, making treatment and trial participation decisions following a cancer diagnosis, in order to understand, and help facilitate, informed treatment decision-making in this age group.Interviews were undertaken with 18 AYA diagnosed, or re-diagnosed, with cancer when aged 16–24 years, and 15 parents/caregivers. Analysis focused on the identification and description of explanatory themes.Most AYA described being extremely unwell by the time of diagnosis and, consequently, experiencing difficulties processing the news. Distress and acceleration in clinical activity following diagnosis could further impede the absorption of treatment-relevant information. After referral to a specialist cancer unit, many AYA described quickly transitioning to a calm and pragmatic mind-set, and wanting to commence treatment at the earliest opportunity. Most reported seeing information about short-term side-effects of treatment as having limited relevance to their recovery-focused outlook at that time. AYA seldom indicated wanting to make choices about front-line treatment, with most preferring to defer decisions to health professionals. Even when charged with decisions about trial participation, AYA reported welcoming a strong health professional steer. Parents/caregivers attempted to compensate for AYA’s limited engagement with treatment-relevant information. However, in seeking to ensure AYA received the best treatment, these individuals had conflicting priorities and information needs.Our study highlights the challenging context in which AYA are confronted with decisions about front-line treatment, and reveals how their responses make it hard to ensure their decisions are fully informed. It raises questions about the direct value, to AYA, of approaches that aim to promote decision-making by improving understanding and recall of information, though such approaches may be of value to caregivers. In seeking to improve information-giving and involvement in treatment-related decision-making at diagnosis, care should be taken not to delegitimize the preference of many AYA for a directive approach from trusted clinicians. A growing body of research has looked at the experiences and views of adolescents and young adults (AYA) with cancer. This work has been undertaken to identify challenges and care needs that may be specific to this age group and support development of age-appropriate cancer services –7. When As commentators have observed, late adolescence and young adulthood is a time when significant physical, emotional and cognitive changes can occur . Hence, Given the varied, complex and – to most of the population – unfamiliar nature of cancer treatments –14, newlAYA with cancer have lower improvements in survival rates than children and older adults and their low participation in cancer trials is believed to be a contributory factor –17. ThisSome research has now explored barriers to clinical trial participation from AYA’s perspectives. Studies have, however, been limited by questionnaire designs , 21, sinHere, we report findings from interviews undertaken with AYA diagnosed with cancer whilst aged 16–24 years and their caregivers. The study was conducted in Scotland, UK, where individuals aged 16+ years have the legal right to make decisions about medical procedures and treatment, including trial participation. We explored interviewees’ experiences of, and views about, making decisions about treatment and/or trial participation following a cancer diagnosis, in order to understand, and help facilitate, informed treatment-related decision-making in this age group.We describe our methods, below, in line with the consolidated criteria for reporting qualitative studies (COREQ) . QualitaOur work took its epistemological orientation from critical realism, a philosophy which, in simple terms, treats accounts as indicative of participants’ lived experiences and perceived realities, whilst recognising that what is disclosed in interviews is contextually-mediated and influenced by a variety of social, circumstantial and other factors , 30. OurOur study was conducted in Scotland, UK. National Health Service (NHS) Scotland delivers cancer care, free of charge, through 14 health boards and more than 20 hospitals. Most patients diagnosed with cancer at age 16 or above receive treatment in an adult hospital, though paediatric hospitals deliver care to some patients aged 16–19 years. Specialist AYA units are available within the four largest health boards.Around 180 young people aged 16–24 are diagnosed with cancer in Scotland each year. From this pool of potential participants, we sought, purposively, to recruit AYA with varying characteristics in terms of age, gender, diagnosis, place of care, and trial experience. Clinical teams facilitated the research by identifying AYA diagnosed, or re-diagnosed, with cancer when aged 16–24 years from three paediatric and five adult cancer centres in Scotland. Initial contact with AYA patients was made by members of their direct care team, who offered these AYA recruitment packs containing an opt-in form returnable to the qualitative research team. Due to the range of direct care colleagues involved in this process we cannot say definitively how many AYA were approached, or how many chose not to take part.Where opt-in forms were returned, contact was made by the project researcher (RIH) who talked through the details and practicalities of taking part in the research. AYA who agreed to take part in an interview were asked to give a recruitment pack to a caregiver  or another individual  who had been influential in their decision-making about cancer treatment and/or care. Again, these packs included opt-in forms, on receipt of which contact was made by RIH. All AYA were recruited between November 2017 and December 2018, whilst caregivers were recruited between February 2018 and January 2019.Interviews were undertaken by RIH, an experienced  qualitative researcher, at a time and location convenient to participants – typically their own homes or the hospital at which AYA were receiving care. In both such locations, interruptions by family members and/or healthcare professionals were relatively common. In such situations, interviews were generally paused, and resumed once privacy was restored. While AYA and caregivers were invited to take part in separate interviews, four AYA elected to be interviewed with one or more parent-caregiver. Topic guides helped ensure the discussion remained relevant to the study aims, while affording scope and flexibility for participants to raise issues they perceived as salient, including those unforeseen at the outset. Key areas explored relevant to the reporting in this article are outlined in an Additional file Two highly experienced, non-clinical qualitative researchers (RIH and JL) analysed the data, using the method of constant comparison  to ident18 AYA were interviewed, of these 13 nominated one or more caregiver who was also interviewed . The remainder either did not wish to involve a caregiver or felt unable to do so (e.g. as their family resided in another country and/or spoke limited English). See Table Below, we begin by describing AYA’s reactions to diagnosis and their experiences in its immediate aftermath, in order to illuminate the context in which they were confronted with decisions about their treatment. Building on this, we document AYA’s responses to treatment-relevant information at this time, and identify reasons why these individuals did not choose, or push, to be actively involved in decision-making. We then consider how caregivers sought to play support(ive) roles to help compensate for AYA’s lack of engagement with information and ensure AYA’s clinical interests were met. Key themes which structure our reporting include: difficulties processing the news; a rush of emotion; a whirlwind of activity; struggling to absorb information; going into a (recovery-focused) zone; disengaging from challenging information; detaching from decision-making; seeking to protect and support AYA; and conflicting information needs.AYA and caregiver participants described a variety of circumstances and events which had led to a cancer diagnosis and referral to a specialist cancer unit. Most reported having been made aware that the results of key tests (such as MRI scans and biopsies) indicated that they/AYA might or did have cancer by a health professional other than an oncologist (e.g. a surgeon). Many described themselves/AYA as having experienced marked deteriorations in health by this point. Some AYA commented that they had felt so unwell, overwhelmed, and exhausted that they had struggled initially to process the news. A16, for example, a young man eventually diagnosed with osteosarcoma, described having been in “unbearable pain” when cancer was first broached, and how, as a consequence, “I didn’t process the information… I wasn’t absorbing anything.” Others described how the after-effects of a general anaesthetic and/or initiation of pain relief had interfered with their ability to process what they were being told. This included A14, a young man diagnosed with a form of sarcoma uncommon in young adults. A14 reported how, when first advised that his symptoms were suggestive of this rare cancer, he had been “so dosed up on morphine that I had no idea what that [diagnosis] meant.”In the majority of cases, shock and extreme distress were described as AYA’s over-riding reactions to the news that they might, or did, have cancer. As the mother of a young man diagnosed with a haematological malignancy recalled: “the first thing (A09) said to me, he said, am I going to die? And I just remember tears pouring down his face, so he did get a big fright.” Notably, however, some AYA participants also described having felt relief, due to the severity of their symptoms and the prospect of now receiving the correct treatment. This included A05, a young woman ultimately diagnosed with bone cancer, who reported presenting to her GP and other professionals on repeated occasions before finally being diagnosed. This young woman described having eventually gone to an accident and emergency department (A&E) in a state of desperation and extreme pain: “I was just in agony. I didn’t sleep, couldn’t eat”. Hence when a series of tests revealed she had a tumour, she described experiencing a range of conflicting emotions:“I’m not going to lie… I was a wee bit stunned and then I was really upset, we were all crying and then I was a bit like, what’s going to happen… but then part of me, in a weird way was like, this is gonna take the pain away. Like the pain was that bad.”“things just moved so quickly... it was like a whirlwind. It just seemed to go from him telling us, and us trying to take it in, and then we had to get to  to meet with (consultant oncologist) and then things just went very, very quickly.”In many cases, the sudden acceleration in activity which followed diagnosis left little time for reflection, and presented additional challenges to AYA processing the news. Many participants reported how they/AYA were sent straight onto a specialist cancer unit, sometimes within a matter of hours of receiving their initial results. As A05’s father recounted in a joint interview with his daughter:“after I saw my (Consultant Oncologist) for the first time, he arranged loads of different scans Because it was very common for it to, have spread elsewhere in the body, particularly the lungs, and possibly the bones. Obviously that was extremely harrowing. I got a CT scan, I got a bone scan, I got a full body scan, heart scan, kidney scan.” (A04)Participants also reported a further escalation of activity following arrival at the cancer unit, wherein, after an initial consultation, most underwent a battery of tests and medical procedures in quick succession to confirm (the type of) cancer and/or establish its spread before treatment could be determined and initiated:“she was exhausted and I think a lot of the time (daughter) was leaning on me zonked out … she didn’t really, really understand the full implications of what it [treatment] was going to entail.”AYA participants were generally able to recall some elements of the consultation in the cancer unit where test results and treatment plans were first discussed. However, many noted how, due to extreme exhaustion, the shock of diagnosis, and the limited time they had had to process the news, they had struggled to absorb and engage with treatment-relevant information. A18, for instance, described a meeting with her oncologist shortly after surgery to remove a large pelvic mass: “We were obviously talking about treatment (radiotherapy). But I’d just come out from surgery, so I was too tired”. This situation was confirmed by her mother who noted how:Notwithstanding their harrowing experiences around the time of diagnosis, most AYA participants described transitioning, relatively quickly, from a mind-set of shock, extreme distress and fear, to one which had been calm, largely devoid of emotion, and deeply pragmatic. This included A12, a young man diagnosed with acute lymphoblastic leukaemia, who noted how, when a consultant discussed his diagnosis and its implications:“Mum and dad started crying... but I didn’t, I just sat on my bed and was quite matter of fact about it… I’d had a little cry earlier, when I’d seen the (Teenage Cancer Ward) sign or whatever, but I’d kind of accepted my fate, already.”“you kind of just go into like a zone, you’re like, it is what it is … you know, you need to get on with it, either way, so. he sat and he explained everything [test results] to me, and I was just like right, I just wanted to get on with it, just let’s go, I wasn’t like upset or anything like that… probably when I’m finished I will be like, oh my God, how the hell did I do that? But when you’re in that zone, you’re like right, this is it, I just need to focus on getting better.”A03, a young woman with Ewing’s sarcoma, likewise described having entered a “zone” following her arrival at the cancer unit, wherein her focus had rapidly shifted from shock and distress to recovery, and commencing treatment at the earliest opportunity to achieve this:Some participants noted how this mind-set had been fostered and enabled by the speed with which investigations had been undertaken and results had come through. Indeed, several individuals described having actively welcomed this forward momentum and accelerated activity, precisely because it had left little time to worry about their prognosis and fixate on negative scenarios:“I’ve been lucky in the sense that. it’s just been literally full steam ahead … and I’ve preferred it like that because you’ve not got any time to think about things because it’s just like, right you’ve been diagnosed, we’re starting treatment we can start next week … it doesn’t give you time to think, like ‘oh no, this is what I’ve got, like, what’s going to happen to me?’ You know, all that stuff that’s negative.” (A16)“It was all really positive stuff, it was never anything really negative at all actually which suited me… From day one, he said to me, going to get you better, going to beat this kind of thing… So, I just wanted to get started then and there.” (A16)Positive steers from health professionals were also described as having been welcomed and as having had a galvanising effect:In light of their focus on recovery and attendant wish to get on with treatment, most participants reported seeing information about short-term side-effects of treatment  as having had limited relevance to their thinking and priorities at the time. A14, for instance, a young man diagnosed between leaving school and starting university, reported how he had not “really given a damn about short-term side-effects, the things that do matter to me are the long-term side-effects, what’s my life going to look like in five years, 10 years.”Some AYA participants also described having chosen to disengage from potentially distressing information, despite its potential relevance to treatment decision-making, due to its potentially detrimental emotional impact. For example, A18, the young woman whose early experiences were described above, remarked: “like chemo and that… I was just too sad to read them [leaflets]… Yeah just, I’d just end up crying”. This response appeared especially marked in relation to information about prognosis. Some AYA described themselves as having had no desire for detailed information on their prospects, and appeared keen to prevent or circumvent negative thinking, as A16 explained:“he (consultant oncologist) never told me what stage of cancer I was in, I never asked, he never mentioned once survival rates, anything like that, which I was happy with.”Though many decisions had to be made about AYA’s treatment, the majority of AYA participants saw themselves as having had limited opportunities for involvement. As one young man described, “decision-wise… it was all laid out for me in a way, there wasn’t really a lot of room for negotiations” (A15). A similar experience was recounted by A14:“I wasn’t presented with much of a decision when I saw (oncologist)… He explained that he wanted to treat me under a regimen which was developed as part of a clinical trial… He basically told me that you’ll have a longer duration of treatment, but it substantially increases your chances of a cure and I was like, fine.”None of these individuals questioned or challenged this directive approach in retrospect. To the contrary, AYA participants often described having preferred to defer decision-making to health professionals, due to having felt unwell and overwhelmed, and just wanting to get on with treatment. A particularly poignant example was provided by A17, a young man diagnosed with a brain tumour following an emergency admission after collapsing at home. Having undergone surgery to remove and biopsy the tumour, this individual described his state of exhaustion as extreme: “I was sleeping after it for about 20, 22 hours per day.” He also described having felt “gutted” on discovering how advanced his brain tumour was (stage IV). A17 made it clear that, at the time, he had just wanted to be looked after and for trusted specialist health professionals to make decisions for him: “do what’s best for me, that’s what I would say.”n = 5) who recalled such an approach as having taken place reported, discussions about treatment and trial participation had taken place concurrently. This was because decisions about trial participation had needed to be made rapidly, before treatment could commence. In keeping with the above accounts, these individuals described how trial-participation decision-making had taken little account of information and had involved limited deliberation. The following interviewee, for example, one of the youngest in our sample, reflected on how:When AYA participants had been invited to take part in a clinical trial following diagnosis, more concrete and tangible decisions had needed to be made. As those participants  and (Dad) what they were thinking, but I didn’t really care, it was more just, it’s probably the right thing to do. So, I just did it.” (A07)Indeed, rather than engaging with trial-related information, participants described taking cognitive short-cuts and basing their decision on the recommendation of, or a strong steer from, the consultant who recruited them:“I didn’t really think about it properly, because… the main factor was actually that, I trusted Dr (Name), and, he seemed keen on it, and he seemed to be wanting to persuade me to do it, so, I was quite happy to take part, without maybe knowing fully, what it entailed.” (A12)“it was all a bit of a blur at that point … I didn’t quite have an understanding of the trial. To be honest I don’t quite have an understanding of it now.”None of these individuals expressed regret about trial enrolment, and all described feeling that their health professionals had acted in their best clinical interests. However, some AYA did question in hindsight whether they had made fully informed decisions about taking part. As these individuals suggested, the problem had not resulted from the information they had been given at trial enrolment but, rather, the context and timing of the approach:Some noted how, as a consequence, their understanding of the trials into which they had been recruited had been very limited, as A01 explained:“Maybe, the bombarding of information in the first week. It’s a lot of information to take in, and then to start treatment so quickly…. Erm… so yeah like, to spread it out over a longer period of time, so that people have that time to process all of it.” (A01)“wasn’t well, he wasn’t taking part in the conversation, it was probably more me. And I think he was just exhausted. And obviously a bit, well, scared.”Caregivers, who were mostly parents, described having wanted to do everything they could to protect and support AYA patients following a cancer diagnosis. Many reported concerns that – as AYA themselves had suggested – their son/daughter had been unable or unwilling to engage with information and actively participate in consultations at the time treatment plans were discussed. This included the mother of one young man (A10), who had been in employment and preparing to buy his first house at the time of diagnosis. M10 observed how her son, despite leading a relatively independent and adult life:Likewise, A12’s mother noted how her son had been, “quite unwell really, (so) even like concentrating on reading documents (was) hard for him.” Reflecting further, she added: “at times I felt that (son) didn’t have the questions to ask, because (son) wasn’t well enough to be asking questions.”Other parents described how, because of their worries that AYA had been unable to concentrate and had not wanted to deliberate at length over decisions, they had found it very challenging that it had been the young person, rather than themselves, to whom treatment-related information had been cascaded, and, moreover, who had been charged with responsibility for decision-making. As the mother of A07, the 16-year-old whose “gut” decision to participate in a trial was described earlier, explained:“ultimately the decision, on the trial, was (son's). I struggled with that… I struggled with the fact that (Consultant) initially was talking to (son), because he can give consent, he doesn’t need our input at all. But I didn’t feel (son), after being told that overwhelming news, was kind of, you know, he needed support to help him make the decisions.” (M07)In response, parents/caregivers described having undertaken various overlapping support roles to help ensure AYA’s clinical interests were met. Specifically, they described having made efforts to be present in consultations to assimilate information on AYA’s behalf; for instance, by listening carefully and taking detailed notes. These individuals also described how, following consultations, they had gone away and carefully read all the written materials which AYA were given, in order to come back and ask targeted and focused questions on their behalf.Most parents/caregivers also reported having undertaken their own investigations before any treatment or trial participation decisions were finalised. This included researching the oncologist’s credentials, finding out more about cancer and potential treatments, and/or researching trials online (when these were offered to AYA). In some cases, parents/caregivers had sought advice from personal contacts who had specialist cancer knowledge. Parents/caregivers described having undertaken these investigatory roles to help ensure AYA received the best care from the most qualified individuals, and to lobby for changes if necessary:“Because we had a few days before we met the oncologist, I was able sort of to have my own questions as to what they were gonna do, and how they were gonna do it, and were they the best?” (M06)Caregivers also noted how, by virtue of having undertaken their own research, they had been better placed to act as sounding boards before decisions about treatment/trial participation were finalised and consent forms signed. To this end, they also noted how they had been well situated to nudge, sway and/or endorse decisions as necessary. A01’s mother for instance, described having encouraged and supported her daughter’s decision to take part in a trial after carefully reading all of the documentation and being reassured that her treatment and care would not be adversely affected:“when you sat down and got the information, it was only the method of treatment that was differing, it didn’t affect the outcome and that was the most important thing to me… so… I said, well you know, it’s up to you at the end of the day, it’s your body, I said, but I think it’s a good idea. So [my role in the decision-making process] was supportive.” (M01)While these caregivers generally endorsed  decision-making, they also noted that if they had had any concerns, they would have attempted to nudge AYA into making a different decision. As A07’s father described:“We did have a friend who’s an oncologist… She’d gone away and done her own research, came back and said, It is a good trial… it’s probably a good one to go on – if she’d come back and said something different, we might have tried to talk (son) out of it.” (D07)In undertaking these support(ive) roles, parents/caregivers recognised that there were potential conflicts between their own information needs and those of AYA. While AYA wanted to maintain a positive, recovery-focused outlook, parents/caregivers described needing realistic information, including information about AYA’s prognosis, to help ensure the best decisions were made:“it might be that some doctors are more upfront about it, but Dr (Name)... was wholly positive with his demeanour, and I actually asked him, ‘cause I didn’t want to ask him in front of (son), I asked him, I pulled him outside that first day, and I said, with (son's) permission I asked him, You know, is, could he die from this?” (M12)As parents further noted, this could sometimes mean treading a delicate line between satiating their own needs and requesting information which could cause distress to their child. A particularly poignant example was provided by M06, whose son had been diagnosed with an extremely rare form of cancer. M06 had been very anxious to ensure her son received his care from health professionals with prior expertise of treating his kind of cancer, even if this meant moving to another cancer unit. To do this, she had found it necessary to ask very difficult questions  which, as she realised, could cause her son upset:“Because they did say they haven’t had anybody like him, which was a bit alarming, because I felt, well, how do they know how to treat him… I asked, well why isn’t he going to (City) where obviously they have got more experience with that type of tumour… I asked was there any place in Scotland where there’d been more patients that had had it? And what was the outcome? But it’s hard saying that when he’s sitting there… You don’t want to say in front of them: What’s the success rate? And you don’t want to put any more pressure on (son) by asking too many things.”This study has highlighted the profoundly challenging context in which AYA diagnosed with cancer find themselves confronted with decisions about front-line treatment and/or trial participation. In keeping with other studies , 22, 24,As our findings suggest, professionals tasked with facilitating AYA’s involvement in decision-making about (front-line) treatment and/or trial participation are often confronted by major challenges in the form of AYA’s physical and emotional states at and in the immediate aftermath of a cancer diagnosis. Such challenges have led commentators to question whether it is really possible to obtain informed decisions about, and consent to, front-line treatment and trials at this time. With regard to trials, some have even asked whether it is  appropriate to attempt to recruit patients so soon after diagnosis, and where decisions about participation need to be made rapidly, so that treatment might commence , 22–24. The literature offers some pointers as to potential ways of overcoming the challenges presented by poor health, distress, and short timeframes. However, while some of these proposals have been recommended for use in AYA and/or paediatric populations newly diagnosed with cancer, they are, as yet, of unproven efficacy. These proposals include using novel communication strategies (e.g. audio or video platforms), decision-aids and question prompt lists , 40–43. AYA participating in our study described how, following diagnosis, there had seldom appeared to have been any major treatment-related decisions for them to make. Agreeing to (or declining) the course of action proposed by professionals was not typically viewed as a real choice/decision. This finding is perhaps unsurprising, given that observational work undertaken in cancer multi-disciplinary team meetings has demonstrated that health professionals tend to reach a consensus about which treatment is best before delivering this recommendation to the patient . Other rWhile a directive approach may be acceptable when health professionals are clear about the most efficacious and acceptable form of treatment, it is potentially more controversial in the context of clinical trial recruitment, where, in principle, equipoise exists and there is uncertainty with regard to which type of treatment is in an individual’s best clinical interests. In these situations, it may be problematic to involve consultants in trial recruitment, given that AYA tend to base their decisions upon trust in those individuals, as opposed to on careful engagement with trial-relevant information. It may be even more problematic still to follow the recommendation, made by others, that those staff to spend as much time as possible with AYA to develop rapport, in order to improve trial recruitment , 24. RatThe role of caregivers in such situations is both interesting and potentially important. Our study extends understanding of parent-caregivers’ concerns, and the work they undertake to support AYA. Previous work involving parents of younger children has shown that these individuals often adopt advocacy and investigator roles to help ensure the best decisions are made for their child , 52, 53.Using a flexible and open-ended approach, we have been able to bring new and important insights to the literature. The inclusion of a caregiver alongside an AYA perspective has revealed a more complex decision-making dynamic than erstwhile recognized. In the context of joint interviews, AYA and caregivers operated as co-producers of knowledge, with caregivers helping AYA to fill gaps in recall arising from acute illness and distress. However, in some instances, this might have inhibited open discussion about the difficulties and worries experienced (by AYA or caregivers). While we attempted to achieve heterogeneity in our AYA sample, we interviewed more males than females. Some of the stoical reactions reported may therefore reflect cultural and gendered norms and expectations regarding masculinity. Because participants’ accounts were retrospective, they may have been subject to recall bias. Hence, future prospective  research could be considered, including observation of consultations where key discussions about treatment/trial participation take place.Treatment in the field of AYA cancer care is guided by complex and evolving protocols, often covering long periods of time. Hence, even under optimal conditions, the cognitive demands of absorbing, processing and employing treatment information for the purposes of decision-making are substantial. Our findings indicate that, due to the context in which AYA are confronted with decisions about front-line treatment, including, where available, treatment through a trial, their decision-making may not be fully informed. The survival/recovery-focused mind-set AYA may adopt as a coping strategy further runs counter to meaningful engagement with information and decision-making. Hence when AYA are first diagnosed with cancer, rather than delving into the detail of the treatment and/or trial, they may prefer to make decisions directed by a trusted clinician. Though this preference may be viewed/interpreted differently on account of their age, there is ample evidence to suggest that AYA are far from unique in favouring a directive approach. Care should be taken not to delegitimize this preference/choice in the process of developing and implementing strategies to improve information-giving and encourage meaningful involvement in decision-making.Additional file 1. Key areas explored in the AYA and caregiver interviews.


In the published article, there was an error regarding the affiliations for Darius Cernauskas. As well as having affiliation 3, they should also have “Food Institute, Kaunas University of Technology, Kaunas, Lithuania.”The authors apologize for this error and state that this does not change the scientific conclusions of the article in any way. The original article has been updated.


Objective: Similar cognitive and behavioral factors underlie and perpetuate insomnia and emotional disorders. This brief case report aims to evaluate the effectiveness of the Unified Protocol (UP), a transdiagnostic treatment designed to target emotional disorders in treating comorbid insomnia.Method: The patient was a 32-year-old male, who met the DSM-IV-TR criteria for chronic insomnia, major depressive disorder, and generalized anxiety disorder. After 3 baseline weeks, the patient underwent 14 sessions of UP and was retested after 1-month follow-up. Consensus Sleep Diary (CSD), Insomnia Severity Index (ISI), and Pittsburgh Sleep Quality Index (PSQI) were completed during baseline, treatment, and follow-up.Results: The treatment led to improvements in sleep onset latency, time awake after sleep onset, terminal awakenings, sleep quality, and insomnia severity. These gains were maintained at 1-month follow-up. Conclusion: UP is effective in improving different symptoms of chronic insomnia. Controlled clinical studies with more cases are required to investigate the effects of UP in the treatment of insomnia. There is a high comorbidity between insomnia and emotional disorders, specially anxiety and depression , 2. TranCommon cognitive and behavioral factors  may underlie and perpetuate both insomnia and emotional disorders . In addiAlthough previous studies have provided support for the effects of transdiagnostic treatment for emotional disorders -17, the Thus, the present case study aimed at investigating the effects of UP, a transdiagnostic treatment developed to target emotional disorders, on insomnia symptoms of a patient, who complained of both insomnia and emotional disorders.Patient InformationThe following is a case report to illustrate the process of treatment with UP in the context of insomnia with an Iranian patient. Some of the information is changed to protect the patient’s anonymity. Patient’s informed consent was obtained prior to the initiation of the study. The patient, S.A., was a 32-year-old single male with a bachelor’s degree in electrical engineering, who was working part-time in a private company. He was referred to the sleep clinic by a psychiatrist for his sleep problems, and was, then, referred by a sleep clinician for psychotherapy. The patient was evaluated using Structured Clinical Interview for DSM-IV Disorders–I (SCID-I) , 19 and Therapeutic Intervention The treatment was conducted according to the Unified Protocol for Transdiagnostic Treatment of Emotional Disorders  and consModule 1 (Session 1): “Motivation Enhancement for Treatment Engagement”To increase patient’s motivation for change, the advantages and disadvantages of “changing versus staying the same” was discussed. He mentioned “being more precise and productive at work, having more energy to deal with his friends, and having more concentration to do home tasks” as advantages of changing and “difficulty of changing habitual behaviors and the time needed to practice new behaviors” as disadvantages of change. Then, to increase patient’s self-efficacy, manageable goals and steps to achieve these goals were determined collaboratively. Module 2 (Session 2): “Psychoeducation and Tracking Emotional Experiences”The three-component model was introduced and the interaction between thoughts, physical sensations, and behaviors in relation to insomnia was discussed. He reported, “I stay awake all night, so I won’t be able to work, and I will be fatigued and irritable in the next day.” as major thoughts at bedtime. He stated that he experienced dizziness, sweating, and increased heart rate in response to these thoughts. In addition, he was engaged in many disruptive behaviors such as staying in bed while awake, studying books in bed, and going to bed much earlier to compensate for sleep loss. The short- and long-term consequences of the behaviors  were discussed. He was able to understand that these behaviors made him feel better in the short- term, but the sleep difficulties maintained in the long-term. As targeting sleep problems before emotion regulation problems may be helpful for skill acquisition and enhancing treatment outcomes , we trieModule 3 (Sessions 3-4): “Emotion Awareness Training”A review of sleep diary data revealed a minor improvement in sleep efficiency. By the third session, the concept of “nonjudgmental present- focused emotion awareness” was introduced. He learned how to observe thoughts, feelings, and behaviors in an objective way and use breath as a cue to remind him to focus on the present moment. In this regard, acceptance of the current sleep state without trying to control or manage sleep was discussed. The patient completed a formal mindfulness exercise in the session. He found this exercise as an interesting and somewhat difficult experience and agreed to practice the mindfulness exercise once a day during the next week. In the fourth session, he stated that although nonjudgmental observation of emotional experiences was difficult at first, he was going to be better in it by practicing it. To help the patient practice the mindfulness exercise in the context of emotional experiences, emotional awareness was practiced by listening to a meaningful music and identifying emotions and reactions to them. Moreover, He was instructed to promote an observer stance during the night when unable to fall asleep and during the day when feeling fatigued, irritable, and sleepy. He agreed to practice “mood induction” and “anchoring in the present” exercise during the day in the next week. In addition, he was prescribed to continue restricting time spend in bed.Module 4 (Sessions 5-6): “Cognitive Appraisal and Reappraisal”A review of sleep diary data showed that sleep efficiency increased compared to the previous module. He reported that staying in touch with the present moment in an acceptable way reduced his rumination and worry regarding sleep. He became aware that nighttime and daytime symptoms of insomnia were not problematic, but engaging in behaviors to avoid these states was the problem. By the fifth session, the patient was instructed to identify negative automatic thoughts (NATs) and common cognitive errors contributing to his sleep problem. He reported the negative thoughts he usually experienced when lying in bed, such as “I won’t get enough sleep tonight; I will be irritable and tired tomorrow; I will do poorly at work.” The interaction between thoughts and emotions was discussed and he agreed to identify and record appraisals and related emotions during the next week. In the next session, “identifying and evaluating appraisals form” was reviewed and the thought “I would have a poor night sleep” was considered more deeply using “downward arrow technique” and underlying appraisals were identified as follow: “I will make a mistake at work and I will get fired.” This thought was challenged at first by identifying “thinking traps”. He was explained that this is a kind of catastrophizing and probability overestimation, and he was instructed to alternate this thought using cognitive reappraisal strategies such as decatastrophizing and countering probability overestimation. Learning to generate alternative appraisals, he replaced the thought with a more flexible one as “Even if I cannot sleep well, I can still do my tasks and the probability of getting fired is too low. Even if this happens, my past experiences show that I have the ability to cope with it.” He was encouraged to identify the core appraisals and use the reappraisal process to generate alternative appraisals. Module 5 (Session 7): “Emotion Avoidance and Emotion-Driven Behaviors”He reported that cognitive reappraisal had helped him reduce his anxiety during bed time. Various kinds of emotion avoidance and maladaptive emotion-driven behaviors (EDBs) and the role of these behavioral components in emotional experiences were introduced. The patient identified a number of his dysfunctional behaviors, such as planning to go to bed earlier, napping, reducing social conversations and daily activities, and trying to save energy in anyway. He confirmed that although these behaviors may be useful in the short run by reducing his anxiety regarding sleep, they have not been helpful in the long run. He agreed to change these maladaptive behaviors by accepting a pattern of approach rather than avoiding and engaging in alternative behaviors. Module 6 (Session 8): “Awareness and Tolerance of Physical Sensations”He noted that engaging in alternative behaviors and particularly having a normal level of daily activities, rather than reducing them due to poor sleep at the previous week, made him feel better. The role of physical sensations in emotional experiences and the interaction between these sensations and cognitions and behaviors was discussed. He confirmed that experiencing physical sensations play a significant role in exacerbating his anxiety, while lying in bed incapable of falling asleep. He identified increased heart rate as a major internal physical sensation associated with his anxiety about sleep. To increase tolerance of this physical sensation, running in place was conducted as a symptom induction test to elicit most similar physical sensations. After 3 trials, the intensity of symptoms and the level of distress were reduced from 8 to 5. He agreed to engage in more symptom induction exercises each day during the next week.Module 7 (Sessions 9-13): “Interoceptive and Situation-based Emotion Exposures”Upon coming back to the clinic for session nine, Mr. S.A. reported that he was practicing hyperventilation as a symptom induction test several times, but his distress never reduced. A more detailed assessment of the situation revealed that he was not fully engaged in the exercise. This was conceptualized as avoidance and after modifying anxious beliefs about this situation; he was instructed to practice with the intensity necessary to fully produce physical sensations. The rationale of emotion exposures was introduced and an avoidance hierarchy in relation to sleep situations was developed. The situations were ranked according to their difficulty. As a first exposure, he agreed to sleep without any earplugs. As a second exposure, he agreed to stop checking the clock during the night. As a third exposure, he agreed to engage in a normal level of social activities rather than reducing them. Another exposure was going to bed at a normal bedtime, stopping postponing tasks to the next days, and stopping cancelling appointments. In addition to situational exposures, interoceptive exposures , which were instructed in the previous module, were continued. Module 8 (Session 14): “Relapse Prevention”Key treatment skills were reviewed, and treatment progress was evaluated. By reviewing sleep questionnaires on a weekly basis, he confirmed that his insomnia severity had reduced gradually. He reported that he was more satisfied with his sleep quality, and his total wake time had reduced significantly. He confirmed some progress in “present focus emotion awareness”, “negative thoughts”, “symptom and activity exercises”, and “avoidance and emotion-driven behaviors”. However, he believed that there are other activities and situations for which he should develop a practice plan. Fluctuation of sleep problems  was discussed as a normal condition and he was instructed to see these situations as an opportunity to practice learned skills more and get back on track.OutcomesAs observed in It was illustrated by a brief case report how UP modules can be used to reduce insomnia symptoms. UP techniques may be helpful in the treatment of chronic insomnia comorbid with emotional disorders. Regarding the gradual decrease of insomnia symptoms during treatment, all modules of UP may be important in reducing insomnia symptoms. Module 1 (by increasing readiness for change), module 2 , module 3 , module 4 , module 5 , module 6 , module 7 (encouraging clients to approach sleep-related avoided situations),and module 8 (promoting continued progress) may affect sleep problems. In general, UP may result in important changes in co-occurring diagnoses by targeting core underlying factors .This case report represents one of the first attempts in the literature to adapt UP concepts to treat insomnia. UP has the potential to target symptoms of both insomnia and emotional disorders in each session. It can help therapists to target insomnia symptoms concurrent with emotional symptoms at the early stages of treatment. Well-designed research with larger samples is required to examine the efficacy of UP in individuals with comorbid insomnia and emotional disorders. We are currently in the process of gathering data on the effects of UP in a comorbid insomniac sample using a single case experimental design.Our results were limited to one patient with a short follow-up period. However, this study can be served as a beginning point for further research.


We applied the list experiment to measure “self-managed abortion” - any attempt by a person to end a pregnancy on one’s own, outside of a clinical setting – a phenomenon that may be underreported in surveys due to a desire to avoid judgement.Accurately measuring stigmatized experiences is a challenge across reproductive health research. In this study, we tested a novel method – the list experiment – that aims to reduce underreporting of sensitive events by asking participants to report We administered a double list experiment on self-managed abortion to a Texas-wide representative sample of 790 women of reproductive age in 2015. Participants were asked how many of a list of health experiences they had experienced; self-managed abortion was randomly added as an item to half of the lists. A difference in the average number of items reported by participants between lists with and without self-managed abortion provided a population level estimate of self-managed abortion. In 2017, we conducted cognitive interviews with women of reproductive age in four states to understand how women (1) interpreted the list experiment question format, and (2) interpreted the list item on prior experiences attempting to self-manage an abortion.Results from this list experiment estimated that 8% of women of reproductive age in Texas have ever self-managed an abortion. This number was higher than expected, thus, the researchers conducted cognitive interviews to better understand how people interpreted the list experiment on self-managed abortion. Some women interpreted “on your own” to mean “without the knowledge of friends or family”, as opposed to “without medical assistance”, as intended.The list experiment may have reduced under-reporting of self-managed abortion; however, the specific phrasing of the list item may also have unintentionally increased reporting of abortion experiences not considered “self-managed.” High participation in and comprehension of the list experiment, however, suggests that this method is worthy of further exploration as tool for measuring stigmatized experiences.The online version of this article (10.1186/s12905-019-0812-4) contains supplementary material, which is available to authorized users. Self-managed abortion encompasses any attempt by a person to end a pregnancy on one’s own, outside of a clinic setting . There iCurrent measures of the prevalence of self-managed abortion, however, are almost certainly limited by underreporting due to legal and privacy concerns, as well as stigma –7. We knGiven these factors, researchers have attempted to assess the extent of underreporting of abortion through use of alternative measures (other than direct questioning), including use of the ‘best friend’ method , wherebyhow many of a list of health experiences they have experienced, one of which is abortion. The respondent does not report which specific events, just a number. Through careful selection of control items on the list to include experiences with expected  prevalence in the target population, analysis of these numeric responses should enable the researcher to estimate the population proportion that has experienced abortion ”“I think I understand what it's trying to get at, which might be that using "bring back your period" as another way to say end a pregnancy or not be pregnant? I mean, I think I feel like that's what you're trying to ask. But I think that there are other contexts that "bring back your period" would work in. And, I don't think anyone uses that terminology. I've never, ever heard, you know, hey, have you seen my - have you heard about Jessica? She brought back her period. It's, you know, she had a miscarriage. She had an abortion. She, you know, took the day after pill.” – Alabama, age 35–39While a number of participants appreciated the clarity and precision of the “self-induce an abortion” language, they also felt that the word “abortion” might carry too much stigma and “scare people away” and thus cause respondents to under-report abortion experiences as a result.Few respondents preferred the other two phrasing options tested in the cognitive interviews . Many participants commented that “bring back your period” was too vague and that it did not resonate with the language they used to talk about abortion. One participant captured this viewpoint as follows:For each of the four phrasing options, participants were asked about the methods of abortion that the wording brought to mind. Participants provided varied responses, including abortion pills, contraceptives, Plan B, tea, herbs, home remedies, and other methods such as falling down the stairs, hitting oneself in the stomach, or abusing alcohol or other substances. When asked about “on your own,” participants mentioned medications and contraceptive methods more often, as compared to when asked about “on your own without medical assistance,” when slightly more participants mentioned dangerous methods of abortion self-induction such as using a hanger, punching one’s stomach, or falling down the stairs. All methods mentioned by participants for each of the phrasing options are presented in Table n = 20) understood the list experiment instructions, provided answers in the correct format, and felt confident in their responses. Participants who understood the list experiment questions correctly gave numbers as their answers to indicate how many of the listed experiences they had experienced, rather than specifying which items they had experienced. Despite accurate responses to the question format, not all participants understood why the question was being asked. One participant provided a succinct description of this viewpoint:“I feel like it’s noninvasive because someone doesn’t have to check all that apply. But I’m not sure if it gets you the answer you’re looking for. But on the responder end, I would feel comfortable with putting a number because you’re not going to be able to [know which I’ve done] – or maybe you can. But when I first think, I’m like, oh, yes, I’ll just say what it is.” – California, age 25–29The majority of interviewees  and “tubal/ectopic pregnancy” (n = 9), and as a result, some felt that they did not know how to answer the question.Most felt confident that the interviewer could not know if they had experienced any particular item on the list: Using a novel method of measuring abortion experiences – the list experiment – we estimated that approximately 8% of women of reproductive age in Texas have attempted to end an unwanted pregnancy on their own at some point in their lifetime. In cognitive interviews, we found that the list experiment to measure self-management of abortion was understandable to a majority of participants, and most felt confident in their responses.The list experiment estimate of self-managed abortion is several orders of magnitude larger than the estimate generated by a direct question about abortion self-management in this same study sample (direct question estimate: 1.7%) . SimilarThe difference between the list estimate (~ 8%) and the direct estimate (~ 2%) was larger than anticipated, and, coupled with the difference in question phrasing, prompted further investigation through cognitive interviews. We hypothesized that the presence or absence of the phrase “without medical assistance” may have resulted in participants responding differently simply because they felt that the questions referred to different experiences. Findings from the cognitive interviews suggest that participants did, in fact, interpret the phrasings to refer to different sets of self-managed abortion experiences. Some participants felt that the phrasing used in the list experiment referenced a narrower subset of abortion experiences – only those conducted on one’s own without anyone else knowing, even a partner or friend – while other participants felt that the list phrasing referred to a wider range of experiences, including in-clinic abortions as long as the individual did not tell anyone about the abortion, or in-clinic abortions as long as the decision was made on one’s own. For instance, some participants interpreted “on your own” not to mean “without medical assistance” as intended, but instead to mean “without the knowledge of my partner, friends or parents.” In addition, findings from the cognitive interviews indicate that women may have interpreted the question accurately, but incorrectly categorized the use of Plan B or other contraceptive methods as self-managed abortion Table . As a reAnother possible explanation for the difference in estimates of self-managed abortion between the two methods is that survey respondents may have felt more comfortable disclosing a prior self-managed abortion attempt via the list experiment question because of the anonymity and confidentiality that the method allows. In that case, the 8% estimate generated by the list experiment could be closer to the true lifetime prevalence of self-managed abortion attempts for women in Texas.To understand our estimate of self-managed abortion in context, we looked to several prior studies that have estimated the lifetime prevalence of self-managed abortion among various populations in the United States. In a nationally representative survey of abortion patients seeking care at 87 abortion clinics and physicians’ offices in the United States, the percentage of abortion clients reporting ever having attempted to self-induce an abortion using misoprostol or other substances was 2.6% in 2008, and 2.2% in 2014 . In a coIn all of the studies above, the samples were selected in such a way that we would reasonably expect that reported attempts to self-manage abortion would be higher than in the general population. For instance, samples of abortion patients or individuals searching for information on self-abortion are likely to differ in important ways from the general population in terms of history of unwanted pregnancy, and perhaps other characteristics related to self-managed abortion attempts. However, given that 7% of abortion patients in Texas disclosed attempting to self-abort for the current pregnancy alone – and likely, this 7% is an underestimate due to stigma and privacy concerns – it is worth considering that the true prevalence is higher than direct estimates suggest.To our knowledge, this is both the first study to use a list experiment to measure experiences with self-managed abortion and the first study to conduct cognitive interviews about a list experiment to measure abortion. The data are limited by the fact that cognitive interviews were not conducted among respondents to the survey. Thus, we can only infer what survey respondents might have been thinking based on responses from cognitive interview participants. Additionally, ordering of the list experiment question versus the direct and best friend questions about abortion self-management may have influenced differences in response. As participants answered the list experiment without any definition provided for what it means to “end a pregnancy on one’s own”, but then answered the direct and best friend questions after reading such a definition, responses to the two direct questions may refer to a different set of abortion experiences than was referenced for the list experiment question. Cognitive interviews were designed, in part, to explore this possibility, and confirmed that interpretation did differ between phrasings.Results from this study, however, are strengthened by the population representative sample for the quantitative survey, and by the geographic diversity of participants in the cognitive interviews – factors that may increase the generalizability of results for research in other areas of the United States. Further, this study represents a unique example of pursuing additional research to investigate surprising or unexpected research findings. The combined results from survey responses and cognitive interviews add important insight into ongoing research on self-managed abortion, including information on the ways in which individuals think about and respond to different word choices, interpretation of the list experiment format, and more.Measuring experiences of abortion self-management is necessary to understand the changing reproductive health needs and preferences of the population, to inform harm-reduction strategies if and where necessary, and to provide an indication, however imperfect, of the accessibility of family planning services. Improving our measures of self-managed abortion and tracking the prevalence of these experiences over time could also provide useful data for evaluating the impact of policies related to abortion and contraception care. More work is needed on a national level to help meet the need for safe, legal abortion care, whether in a health facility or via expansion of service delivery models to include de-medicalization. In future research, the high comprehension of the list experiment method reported by cognitive interview participants suggests that the method may be a worthwhile tool to assess self-managed abortion in the United States. Future research on this topic may do well to use the phrase “on your own without medical assistance” to more specifically capture the experience of self-managed abortion as defined by family planning researchers, with an awareness of the broad range of methods this phrasing may bring to mind for participants.Additional file 1:Cognitive Interview Guide. (DOCX 33 kb)