Symptoms of psychosis such as hallucinations and delusions can be intrusive and unwanted and often remain treatment-resistant. Due to recent progress in basic and clinical sciences, novel approaches such as sleep-based interventions are increasingly becoming offered to address the physical and mental health issues of people with severe mental illness. While the primary outcome is to improve sleep, studies have demonstrated that interventions that target symptoms of insomnia can also produce improvements in the severity of psychotic symptoms, quality of life, and functional outcomes. This study presents qualitative data on the attitudes and preferences of people with schizophrenia and schizo-affective disorders to three different types of therapies for insomnia . Interviews included discussions regarding the perceived advantages and limitations of different therapies, enablers to taking up the preferred option, as well as personal strategies that have helped respondents with sleep problems in the past. Results showed that, when given the choice, these individuals prefer psychological and behavioral-type therapy to other sleep interventions because of its potential to support and empower them in taking responsibility for their own recovery. Pharmacological therapies, by contrast, are viewed as useful in managing acute sleep problems, but only as a short-term solution. Overall, the findings underscore the need for patients’ active engagement when making decisions about treatment options. The term ‘psychosis’ refers to a set of experiences which include hearing voices and seeing images that other people do not  and unusual beliefs that others do not share (‘delusions’). These symptoms often attract a psychiatric diagnosis such as schizophrenia, schizoaffective disorder, bipolar disorder, or other psychotic disorders. Symptoms related to psychosis can be particularly distressing and burdensome, and can persist despite intensive and prolonged treatment, prompting the need to explore alternative interventions.Sleep has been an area of increasing interest in the treatment of mental illness such as depression  and moreIn response to these findings, specific strategies which target poor sleep in psychosis are increasingly being developed with a view to improve sleep, but also to treat psychotic symptoms e.g.,  and amelRecovery-oriented practices advocate for individuals to be actively involved in decision-making about available intervention options, yet people living with schizophrenia and psychosis may not be given many choices or may find themselves unheard by mental health professionals in treatment planning and care . If inten = 1). The lived experience of people with psychosis has previously been examined using such qualitative methodologies and studies show that these individuals are highly capable of engaging in this style of interviewing and providing informed opinions , and to identify issues of personal importance with regards to taking up these therapies (‘key concepts’ framework). Qualitative methods are often utilized to conduct in-depth inquiries into a specific issue and have considerable explanatory power when seeking to understand personal perspectives that cannot be comprehensively addressed using quantitative measures. New knowledge is generated through the analytical examination of narratives in response to semi-structured interviews. Typically, interviews and focus groups are conducted until the same themes keep re-emerging (a state of ‘saturation’). Thus, sample sizes in qualitative studies are typically much smaller than cross-sectional studies  therapies. The interviews included discussions of (i) the perceived advantages and limitations of each therapy, (ii) preferred approaches, (iii) enablers to taking up the preferred therapy, and (iv) personal strategies that have helped these individuals with sleep problems in the past. Before the results are presented, an overview of the different treatments available, their evidence-base and their mechanisms of action, are presented.Different types of interventions are available to treat sleep dysfunction in psychosis. Some are based on techniques known to be effective in community samples and others are informed by an analysis of sleep–wake behaviors. The most commonly used interventions to regulate sleep–wake patterns and improve symptoms of insomnia include (1) standard pharmacotherapy, (2) melatonin, and (3) psychological and/or behavioral interventions. Other interventions exist  but insufficient evidence exists for their use in psychosis or they are not recommended due to a possible association with psychotic relapse  transmission are thought to represent a likely mechanism for producing sedation. While antipsychotics are not recommended as a direct treatment for sleep disturbance in clinical guidelines, a common perception amongst mental health staff is that antipsychotics can satisfactory addresses both symptoms of psychosis and chronic insomnia. Indeed, many patients report immediate symptom relief, but empirical evidence regarding the sleep-promoting effects of antipsychotics remains mixed. For example, improvements in total sleep time, sleep efficiencies and stage 2 sleep have been reported  but sleeMelatonin (ingested as daily capsules) is commonly offered for the treatment of insomnia and other disturbances of the sleep–wake cycles in the general community. Melatonin is a natural hormone secreted by the pineal gland which acts to stabilize circadian rhythms. The sedative and chronobiologic effects of melatonin have led to its popular use as a treatment for insomnia, jet lag, circadian rhythm sleep disorders as well as in mood disorders. Melatonin produces fewer side-effects than antipsychotics, although it can be linked to headaches and drowsiness in higher dosages.Given alterations in circadian chronobiologic rhythms of melatonin  in individuals with schizophrenia-spectrum disorders , melatonNeurobiological changes can explain many of the sleep problems in psychosis e.g., , althougComponents of cognitive interventions target cognitive hyperarousal, maladaptive thought control strategies, dysfunctional beliefs and attitudes such as the perceived need to control sleep, and relaxation elements. By contrast, behavioral interventions focus on the formation of good sleep habits , breaking negative associations of the bed as a place of frustration, and awareness of sleep-promoting activities such as regular exercise. The benefits of such approaches to insomnia in the general population are well documented e.g., .Some therapeutic approaches include behavioral interventions alone , although studies in the (non-psychiatric) community show that therapies that address both behavioral and cognitive elements  have the most potential in producing reliable and durable changes .Individuals with psychosis often have a sedentary lifestyle and a lack of daytime structure , suggestWhile CBT-I is recommended by the American Academy of Sleep Medicine as a first-line treatment for insomnia , few stuOverall, a number of interventions may be used to improve sleep and symptoms for people with schizophrenia and related psychoses. The current paper now presents a study of their preferences regarding these interventions.In this section, the views and preferences of a sample of individuals with schizophrenia and related psychoses with regards different types of evidence-based therapies for insomnia are presented. The interviews included discussions of (i) the perceived advantages and limitations of these therapies, (ii) preferred approaches, (iii) enablers to taking up the preferred therapy, and (iv) personal strategies that have helped them with sleep problems in the past.Participants were recruited from Graylands Psychiatric Hospital (inpatient wards) and a local mental health drop-in centre (The Lorikeet Centre). Recruitment occurred using advertising and a snow-ball technique. A total of 14 respondents completed this study . In keeping with previous research conducted with this population , the aimAll individuals had been given a diagnosis of schizophrenia or schizoaffective disorder by a mental health physician, and all participants had substantial past or current sleep problems accompanied with daytime dysfunction. Length of illness since first hospitalization ranged from three to 33 years (mean = 16 years). All participants were taking one or more antipsychotic drug; three were also taking benzodiazepines, and five antidepressants. All had a prior experience of sedative and/or benzodiazepine. One participant had received sleep hygiene information in the past . Two had tried melatonin, and one (ID4.1) was still taking melatonin, but none had received CBT-I. Ethical approval was granted by the University of Western Australia and North Metropolitan Health Service – Mental Health Human Research Ethics Committees.Focus groups followed standard procedures . Focus gSessions were recorded on audio tape, and then transcribed using Table 1 for summary).Using the systematic analysis described above, reports were pooled separately for the different interventions. Overall, the respondents had firm opinions about the different sleep treatments , but also physical health (drug-free), psychological health  and principles sustaining recovery . Cognitive and behavioral therapies met all seven criteria and was rated as acceptable by 71% of participants, melatonin met one criterion (acceptable in 57.2% of the sample), and pharmacotherapy none (acceptable by only 22.5% of participants).Six elements were then identified as unwanted in therapy: lack of confidence in its evidence base; risks associated with polypharmacy; side effects from medications ; and lack of choice and control over the process. Lack of motivation was also perceived as a barrier to engaging in therapy. Pharmacotherapy met 4/6 (66%) of these unwanted elements, melatonin 3/6 (50%), and cognitive and behavioral therapies 2/6 (33%).Respondents reported mixed feelings about their medications, and had both positive and negative opinions about pharmacological approaches to sleep treatment. Six respondents (42.8%) felt that medications had helped with their sleep problems:(ID7.1) Well I went to the psychiatrist and she prescribed me antipsychotics and I went to sleep after that.(ID4.1) I’d like to have been on something else, like temaz just for a little while to cover the time so I can have a decent night’s sleep.n = 11, 78.5%) however, did not view pharmacotherapy as an acceptable intervention. Reasons included unwanted side effects and possible interactions between drugs :A majority ((ID8.2) I was just about to say, sometimes it takes about 11 or 12 hours I’ve noticed with some medications to wear off enough to be alert you know what I mean?Other reasons were that the medications didn’t always help with sleep problems (42.8%), or that their physicians were often changing the type, dosage or scheduling of medications, which impacted on their sleep:(ID6.1) I couldn’t sleep for weeks … the doctor in her wisdom decided to change my medication; They’re always juggling with it in the clinics, and I’ve had to put my foot down – no more juggling unless there’s a really good reason for it, I don’t wanna be a guinea pig.Respondents’ views of melatonin were largely favorable. Six respondents (42.8%) were drawn by its novelty and had not heard of other people using it:(ID1.2) Probably it’s just something new. You wanna try something new, see if it will help me go to sleep.n = 4; 28.5%) viewed melatonin as a more natural and safer option than pharmacotherapy:More than a quarter of the sample ((ID9.1) If you’re giving melatonin works better than a sleeping tablet, it’d be a more natural option.(ID6.1) Well I know that melatonin’s natural and it is something natural.While melatonin was perceived to be ‘more natural’ than pharmacotherapy, it was still viewed by many as another drug option, and thus potentially harmful. Six participants (42.8%) did not want to take more medications than they needed to:(ID2.1) Aw the thing is I don’t…I take plenty of medications and I wouldn’t want to take any more than I have to…(ID3.2) Yeah that’s the thing, like you know, for years with me like I’d take tablets, a side effect pill to counteract that, and injections too… and now I’m down to just a couple of tablets at night and I don’t want to go back to scoffing down pills and getting jabs you known = 6, 42.8%), particularly relating to headaches and tiredness, and the interaction melatonin might have with other drugs:A sizeable minority also worried about possible side effects ((ID4.1) I’d rather not be on melatonin if it can cause headaches or drowsiness.(ID1.3) What if it clashed with the other medication that we’re taking?Discussion of non-pharmacologic interventions brought up a greater number of positive than negative points, and a quarter of respondents did not raise any negatives views toward cognitive and behavioral interventions (29%).Half of all respondents (50%) agreed that a benefit of such treatment was that it was a drug-free option:(ID3.1) Because it doesn’t include much of the things with medications. I get some pretty bad things with side-effects.(ID5.1) Learn to know yourself better, because spend time to think about what affects you or not, something good for you, natural way.n = 4; 28.5%) were skeptical regarding whether it could offer something new that they had not tried before, or stated that ‘talking’ had limited efficacy on sleep problems:However, a quarter of respondents ((ID5.2) yeah cause I’ve tried a lot of like CBT kind of stuff, and what else… yeah I’ve tried heaps of stuff. I got into Buddhism like full on, and I was meditating every day, and guided visualizations… all that sort of stuff, and it doesn’t seem to do anything.Being actively engaged in the treatment process was a benefit of cognitive/behavior therapy for 50% of respondents, who felt that being involved in the treatment process would give them a sense of control and autonomy:(ID1.3) Like working at it and doing.. you know…what we’ve been told…working at it. Like trying to help yourself.(ID3.2) But if you said, like it’s a test and you make that decision and that’s what you want to do, then that’s your decision, your control…so it’s a bit of a plus there. Yeah I think that’s pretty much a human element isn’t it?n = 8) understood that the aims were to establish a good sleep routine and to promote long-lasting changes in sleep behavior.The majority of respondents  Yeah. I’d give it all I had you know, because I’ve grown to understand what it…I’m looking to break the bad sleeping habits really. It probably works better in the long term, I think, because what you learn stays with you… well that might be my experience.n = 4). Learning to relax was also perceived to be a valuable skill by four participants (28.5%):Sleep problems in psychosis are often related to worries, stress, and anxiety. Respondents stated they would value therapist advice on how to deal with stress and racing thoughts  They’ve got a progressive one which relaxes your muscles from there down to your feet which is very, very goodConversely, two participants (14.3%) worried those psychological therapies for sleep may bring up traumatic issues;(ID1.2) Well it might be a bit unsettling too…Well it might stir up too much stuff that you can’t deal with. Yeah, there’s people who may be sensitive to it.Finally, face to face interaction, and the sharing of personal experiences, was seen to be of therapeutic benefit for four respondents (28.5%):(ID8.2) I used to ring helplines and things like that. I’ve had friends too who have rung me at odd times of the night. I think sometimes all you need is some confirmation you’re human, you’re alive.(ID4.1) About life issues, about problems, you can keep people calm, not be frightened of sharing your thoughts, to have understanding of one another.n = 6) included the discipline, time and hard work that is required for the psychological therapy. The motivation needed to repeatedly attend the sessions and actively engage in treatment was also voiced as a limitation by five (35.7%) of the respondents:Challenges for 42.8% of participants ((ID5.2) You see my biggest problem is my motivation, I’m not very motivated. I’m told that that’s part of something to do with the frontal lobe or something like that where it affects my motivation, but I’m not sure if that’s sleep-related or notParticipants were asked to reflect back on their journey with mental illness and to describe the type of insomnia treatment they would chose if they had been given the choice.n = 8) was that one approach might not fit everyone, all of the time. Specifically, a treatment might work for one person but not another, and also that some interventions work better at some stages of the illness or recovery than others. Particularly, during the acute phase of the illness, pharmacological approaches might work best:One dominant opinion  In those days, I was just hopelessly entwined in my illness and I thought I was alright, but looking back like…(ID5.1) Sometimes I can’t work by myself, don’t know why and only the medicine can keep me in routine.Respondents also suggested that psychological and behavioral interventions should be the first line treatment, with a focus on sleep education, relaxation techniques and having someone to speak to, and with pharmacological options available if cognitive and behavioral sessions do not seem to be improving their sleep.∗∗ off, and I can’t do this anymore”, that’s maybe when the medication should come in. But it should be kept at a bare minimum, you know, only like you know if they use it once every 5 days that would be really good you know.(ID2.1) When that person starts getting aggravated and saying “this isn’t working” And then they start getting aggro “I can’t sleep, fTable 2 shows that participants provided a wide range of solutions.With cognitive and behavioral therapies as the preferred option, we asked participants about factors that might enable and support them in taking up such therapies. Solutions were broken down into five main themes. The first theme relates to access to information in a language that is easy to understand, and which addresses sleep issues that are directly relevant for people with symptoms of psychosis. Therefore, studies which seek to understand the perspective and personal experiences of people with lived experience, in their own words, are better able to identify gaps in knowledge and define clinical targets. For instance, our recent work with groups of people with psychosis suggests that night-time rumination, worries, hallucinated voices, external locus of control , as wellThemes 2 and 3 address some of the benefits of therapies from a personal perspective, and using the group format as a productive conduit. First, sleep improvements are linked to broader psychological improvements which include feeling better, reduced tiredness and increased energy, all of which provide motivation to persevere with the therapy. Second, group interventions are perceived as advantageous by providing opportunities to contribute and learn as a valued member of their community. The opportunity to talk to and learn from others was important for many participants, who reflected that each individual has a personal and unique journey which can be meaningfully shared with others facing similar issues.Theme 4 relates to overcoming personal challenges and the hard work necessary to make changes in sleep habits and cognitions that support good sleep. The ideas raised were drawn from each individual’s experience in finding their own personal strengths – some learnt to ‘let go,’ others to ‘self-talk,’ or ‘conduct rituals.’ These self-reflections make psychological therapies particularly suitable for addressing sleep problems  given that they provide a space for the person to find their strengths and personal strategies as guided by an experienced therapist.Finally, theme 5 relate to practical issues about attending the sessions. One participant raised the need for transport assistance to attend the session. Financial hardships experienced by people with psychosis on a pension are a common problem, and can get in the way of these individuals receiving the right treatment and at the right time.Table 3). Sleep tips are now widely available on the internet and popular media  and from general and sleep practitioners. Yet few are written for people with psychotic disorders, and by people who themselves experience psychosis. Although the current participant group had not received any coaching or formal sleep education, their strategies closely followed those recommended for community populations such as the importance of winding down, relaxation, and regular bedtimes.Finally, participants’ strategies that had been found to support their sleep were solicited  is often taken for granted by people in the community. One participant suggested ringing helplines as a way to meeting one’s psychological needs and reassurance, and achieving better sleep.This paper examined the views and attitudes of people with psychosis about different treatments for insomnia. This study demonstrated, yet again, that people with severe and persistent mental illness are perceptive and insightful and must to be consulted about their treatment and care.Respondents expressed mixed feelings about pharmacotherapy. Many felt that antipsychotic and sedative medications had benefited their sleep, although concerns remained about side effects, particularly next-day drowsiness, poor attention, and concentration. This supports recent findings reporting on the side effects of antipsychotics on concentration, memory, tiredness, and restlessness  and of tA majority of participants responded positively to melatonin as a sleep treatment option, and a majority said they might try it if given the opportunity. Its unfamiliarity, however, led to concerns about how it might interact with their other medications and other side effects.In the decisional balance, psychological and behavioral-type therapies were perceived as more attractive and with the potential to have greater sleep, psychological, physical, and recovery benefits than any other type of intervention, and the majority of respondents favored this approach over the others. The dominant view was that such therapies have the potential to support and empower these individuals to take responsibility for their own lives and their recovery. Participants noted that the learning process regarding how to manage sleep, and how to cope with sleep problems, provides the only approach to a long-term solution to their sleep problems. This acknowledges that these individuals are experts in their own lives, and that they should be given ownership and responsibility for their choices with appropriate support.While some respondents were skeptical regarding the potential of such therapies to help with their sleep, many were drawn to psychological support as a way of addressing stress, worries, and racing thoughts. Ambivalence regarding the value of CBT by clients with psychosis has been described previously. In Lack of motivation was recognized as a possible barrier to engaging in psychological and behavioral therapies. Lack of motivation is a well-known symptom of psychosis e.g.,  which liOne possible motivation strategy makes use of group therapy with its opportunity for sharing lessons from one’s journey and to learn from each other. In support, in this study, the group format as a methodological approach led to the exploration of a broader range of issues relative to single interviews. Of note, however, a subgroup of participants chose to have individual interviews rather than a group session. While no key differences in sleep themes emerged, personal contents were more frequently brought up, with participants reporting a greater number of adverse experiences . It is possible that these experiences were also common in the other participants given that trauma is a common feature of psychosis , but thaWhen asked their opinion regarding which treatment might work best, participants explained that everyone is different, and that people need different things at different times. Cognitive and behavioral approaches were perceived as more likely to yield benefits in the longer term, but they may not suit all individuals especially if the person is experiencing lack of insight, uncontrollable tiredness, or an acute episode of illness. Eight participants thought that concurrent pharmacological and psychological/behavioral interventions might be the optimal approach during an episode of acute illness.With regards limitations, the objective of the study was to sample the views of people with psychosis in different environments, and participants included both psychiatric inpatients and individuals in remission from psychotic disorders. One consequence, therefore, is a small sample size in each of the two groups, although this approach may arguably provide greater methodological triangulation. The primary difference between inpatients and outpatients was in the discussions by inpatients about their sleep experiences in the hospital environment . Another limitation is that individuals volunteered to take part in this study possibly introducing a participant bias. Finally, no participants had received CBT-I but all had used pharmacological approaches and two had tried melatonin. Participants had, therefore, informed views about antipsychotic medications and sedatives, and were more likely to be aware of their side effects. By contrast, participants made ‘educated guesses’ about the other treatments which may not reflect the views of a personal experience of these interventions.In light of evidence showing that poor sleep is intrinsically linked to symptoms of psychosis and that it may act as a barrier to recovery, it is becoming a clinical priority to fully address sleep problems in people with psychotic disorders. In this study, psychological and behavioral-type interventions and melatonin were viewed as valid adjuncts to pharmacotherapy and there was a strong desire for participants to make their own choices regarding the type, and timing, of their therapies. This suggests that psychological and behavioral treatments, including CBT-I, should be more systematically offered to people with psychosis with co-occurring insomnia. In services without clinical expertise in CBT-I, allied health professionals should offer behavioral interventions and education with an emphasis on good sleep habits , awareness of sleep-promoting activities such as regular exercise, association of the bedroom for sleep only , as well as relaxation and stress-management techniques .Overall, this study showed that clients seeking clinical care for sleep problems must be consulted about their preferences and views, and that engagement with others who share similar experiences and an understanding of advantages and limitation of different interventions may be key elements to successful change.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.


Scars left by self-injury can be seen as communicative, and the analysis developed here demonstrates some of the various ways that these marks may be read. Attending to these diverse narratives can contribute to the provision of compassionate, non-judgemental care for patients who have self-injured. Further, highlighting the existence of different ways of narrating the self-injured body may offer an optimistic resource for people who have self-injured.Illness narratives have traditionally been used as a conceptual tool for exploring experiences of chronic illness or disease. In this paper, I suggest that Frank's typology of illness narratives  also offers an illuminating approach to analysing accounts of self-injury, demonstrating the diverse ways in which self-injury is practiced, experienced and narrated. Drawing on 24 narrative interviews with 12 people who had self-injured, I focus on participants’ accounts of their self-injured bodies. The approach is phenomenological, and concerned with talk about the experience of living with and in a body that has been marked by self-injury. Thus, the  People who self-injure can be seen to occupy an uncertain position, one which unsettles notions of sanity and madness, and dramatically breaches imagined boundaries between physical and mental health. Self-injury12Illness narratives have become a widely used approach in scholarly work seeking to illuminate the importance of patient experience.illness, though some would argue it should be seen as such: ‘non-suicidal self-injury’ has recently been proposed as a psychiatric diagnosis and it remains unclear how such changes in categorisation might shape individual understandings.repeated self-injury could perhaps be described as chronic. In some cases, the consequences of self-injury include long-lasting, permanent marks and scars. Thus, even when individuals have effectively ‘stopped’ injuring themselves, they may carry noticeable evidence of their past behaviour; as such, the visible, corporeal effects of self-injury in the form of scarring may also be understood as chronic.Analysing self-injury using the concept of illness narratives may not, at first glance, seem appropriate. Contested as it is, self-injury is not necessarily an and self-poisoning) have indicated the importance and diversity of different modes of accounting for the practice. Written accounts of self-injury were examined by Boynton and AuerbachNarrative approaches to the study of self-harm . All participants provided informed, written consent including consent to reproduce quotations from the interviews in published work. Participants were given the opportunity to read transcripts, though only one participant took this up. The second interview provided further opportunity to encourage active engagement in the narratives being produced during the research; in the second interview, participants were invited to contribute their own themes for discussion. This reflected the original aims of the project which had been collaborative,how self-injury was talked about and in order to do this, it seemed important to preserve, as far as possible, the manner in which participants told their stories. These accounts are different, then, from many of the published illness narratives Frank drew on when he set out a typology of illness narratives in The Wounded Storyteller.The analysis presented here is based on naturalised transcriptions of interview discussions.Despite the ‘messiness’ of participants’ accounts, early on in analysis I began to identify commonalities and contrasts in how talk about self-injury, and self-injury scars, was structured. Particularly with regard to accounts of self-injured bodies, Frank's typology of illness narratives  provides a useful approach to exploring these structures.FrancisI suppose there's a bit of disparity cos, in my mind I sort of feel like I'm OK with it, like, I'm perfectly, happy with, […] what I've, you know I don't have, any reg- I don't really regret doing it or I'm, really ashamed of it or, you know anything like that, but at the same time I'm not … I don't, wouldn't want to just openly talk about it at work […] I think that's basically cos of, I think they might have preconceptions. Restitution narratives address a desire for a return to a preillness, or preinjury, state. While in some cases .There is a difference between the ambivalence expressed by Francis and Emma, and the more explicitly negative—perhaps chaotic—account provided by Anna. The chaos narrative is one of the more challenging of Frank's typology.continue to self-injure:Anna… the scars are there for, forever now, so [pause] I think that's kinda a bad thing though, because it, … see if it's something that faded over time, you might sorta go, oh well, it all faded so, that's it I'll no bother. But I've got these scars now, they're there now, the damage is done, I just cut on top eh scars now, just, covered… totally utterly covered [pause] so it's like, phew [pause] what's the point, of stopping. Anna, like some of those described above, indicated some attempt to remove the scars generated by her practice of self-injury. However, in contrast, she emphasised the futility of her efforts. More importantly, she reflected that the presence of her scars provided a reason to AnnaI just have this, sortae warped body image, and I don't know if that's, again, I don't know if that's part ae the ... the self-harm, d'you know, I don't know if that's why [pause] like I hate this body so I'll just, [pause] abuse it [laughs] […] I mean I cannae, can't look in the mirror, cannae look at myself [long pause] just, disgusting. Anna suggests therefore that the nature and extent of her scars provided a reason not to stop—‘what's the point’. Anna's discussion of her scars reflected her broader narrative which was often pessimistic in relation to her life in general, reflected also in her accounts about her body. She described herself as having an intensely uncomfortable relationship with her body, which was manifested in feelings of self-loathing and disgust, and practices which, as well as cutting herself, included disordered eating.escape from chaos. While Anna suggested her self-injury related to self-hatred, elsewhere in her interviews, self-injury was framed as an act carried out in response to overwhelming emotional and social situations, where she felt out of control. Self-injury, at times, offered a way to regain control and—perhaps—to conquer chaos, if only temporarily.AnnaIf I'm no’ in control of a situation, or if I'm no’ in control of what's happenin’ … that's when I self-harm […] It's like… if, if somebody says something or, or [pause] or… you know something's going on and I'm like ‘oh god I cannae stop this’ or … em sometimes I start to panic aboot things, and the only way I can stop panicking about it and think rationally about it is … cut myself [pause] it's just like, I dunno it makes me just stop I suppose and then, it's like right ok, deal wi it. So I think it's like getting control or gaining control. Anna's account here and during the previous excerpt was uncertain and hesitant; her tone markedly deflated. These more negative sections of Anna's interviews aligned closely with the chaos narrative form, lacking focus and hope, providing a sense that the teller did not feel ‘in control’ of the situations she described. Anna did not present a narrative which was wholly ‘in chaos’, however, and she provided a more hopeful account at other times in her interviews. In particular, at some points her narrative indicated her practice of self-injury might provide an practice of self-injury. Control is also an important feature of Frank's illness narratives, both in terms of implied control (or lack of control) of the body and as regards the use of story and narrative as a way of regaining control over the ill body.AnnaHave you seen that [scar reduction product] that's advertised? […] it kinda does fade them, but, ‘fraid I think I've got too many big, deep, ... kinda big scars now that it just, it wouldnae work. Em, but for a long time I could get away with [shorter] sleeves cos it wasnae, kinda here, but, it—progresses. Self-injury was described similarly by a number of other participants, and ‘control’ was certainly a recurring motif throughout the interviews when describing the progression of self-injury, and the generation of ‘bigger’, ‘deeper’ scars: scars which were less amenable to attempts to reduce their appearance. Thus, as with the restitution narratives discussed above, Anna's chaos narrative applied particularly to her account of her scars, with chaos being more complicated when describing the act of self-injury itself.Anna's account implied less control over the and their permanent scarring, which emphasised the transformative, positive nature of both. These narratives align closely with Frank's quest narrative form, as the illness experience is reworked by the teller as initiating a transformed, improved self.In stark contrast to Anna's account, several participants provided narratives about their practice of self-injury MarkBut, because that one was so bad, em, … it almost serves as, as a [sign] I don't need to cut, I've got that […] it's like er, it's like a badge. […] I think if I hadn't done that, my arm would have been a lot more—covered in small cuts. Mark provided a narrative which frequently alluded to how self-injury had been effective at the time, helping him to manage periods of depression: ‘it worked, it worked […] it's always had a positive, feeling to me’. This affirmative account was carried through into Mark's discussion of the scars that his practice of self-injury had left:This particular narrative referred to a large scar left by what Mark indicated had been his final act of self-injury. Mark portrayed this event  as effectively ending a difficult interpersonal relationship. As indicated here, he suggested that the resulting scar now acted as a signal, or reminder, that he did not ‘need to cut’. Significantly, Mark's account argues that had he not cut himself ‘badly’ on that occasion, his body may have now carried numerous smaller scars. Mark's discussion paralleled those provided by others where scars, and the self-injury which had generated them, were linguistically harnessed in order to generate an understandable, meaningful, account of both past acts and current, scarred, body.ReaseIt's [depression] like you're, cut-off from people. So I felt like that, and the, the self-harm brought me back to life[…] would kinda wake me up, and just make me feel so much better. In Rease's case, self-injury was explicitly framed as an important part of a broader transformation, helping her to feel more comfortable in her own body, as well as being a response to feelings of anger, self-loathing and depression.Rease… it is about adornment and celebration […] And in a way my scars are as well, actually, ‘cos I do think they're really beautiful, and they're like a part of my, my experience, my history. And I very much believe about, em, your experience—written on the body and the body telling a story. Rease argued that both her earlier practice of self-injury and the scars she carried with her in the present were positive and represented constructive acts, involving taking control of her body, her life and her story:and the resulting scars.While other participants similarly emphasised that self-injury had been a successful method of managing distress, the accounts of Rease and Mark differed in explicitly tying positive meanings to both their practice of self-injury who the story might be for, and whether others might understand the story in the way the teller/body intends. Indeed, the accounts participants provided about hiding, concealing or minimising their scars frequently alluded to concerns about how ‘others’ might read scars. A contrast to this concern is found in Milly's account of deciding to ‘stop hiding’ her scars. Like Rease and Mark, Milly provided a provocative narrative, where she subverted concepts of stigma and shame, suggesting that viewing her scars could act as a form of support for others who might not be ready to be as open as she was:MillyI, for me it's a sense of pride, of being able to say to people ‘I've, been through crap, but I've got over it’ rather than keeping it hidden […later…] to be able to show, and I don't think this has, been discussed either, to be able to show, what I've done, it's not—like I said earlier on—it's not like ‘hey look at me, look what I've been through […] isn't it shit’ … it's a, … this is, this is what I have [been through], this is what I was, and this is who I am now. That scars and the body might tell a story provoke questions about Milly framed her revealing of her self-injury scars as a moral, compassionate move that opened up conversations with others who had self-injured and facilitated sharing of experiences. She emphasised her ‘pride’ in who she was, contrasting this with earlier difficulties she had faced during adolescence and young adulthood.ethics of recollection, of solidarity and commitment, and of inspiration (Frank30The quest narratives produced during this research provide parallels to Frank's discussion of the ethics of storytelling, and particularly the ethics invoked by quest narratives.practice of self-injury. As such, this analysis parallels the use by Sinclair and Green of the typology to analyse accounts of moving away from self-injury,The accounts discussed in this paper demonstrate the diverse meanings that self-injury, and the scars that it leaves, can hold. Although self-injury is not straight-forwardly an ‘illness’, accounts of self-injury reflect Frank's typology of illness narratives, particularly when attention is paid to narratives about bodies that have been scarred by self-injury.While illness narratives frequently refer to or invoke the ill body, with self-injury the scars—the evidence of ‘illness’—can be both the starting point and originator of the story. Participants described deep unease about the possibility that others might ‘read’ scars incorrectly, or might make unfavourable assumptions about them as a result of seeing them; even those who provided positive accounts of scars indicated that they concealed them in certain contexts. Thus, the scars left by self-injury can be understood themselves as communicative, and narratives provided by people who are scarred provide an opportunity to control, to some extent, the nature of this communication. The analysis developed here indicates that the level of control people might have over these narratives varies, though in all cases drawing on culturally available frameworks: of overcoming and transforming bodies and stories through painful experience; of feeling out-of-control and losing hope; of gaining control via interventions and ‘fixes’ which return the body—at least partially—to what it once was.partially embodied perspective on this experience. Further, by highlighting accounts of the impact of living with a self-injured body, our attention is drawn to the importance of the long-term nature of some self-injury in which scars may endure long after the practice itself has ceased. Given the apparent rise in the number of people who are engaging in self-injury,Attending to the diverse ways in which scars—and self-injury—may be understood should comprise an important aspect of compassionate clinical practice. CarelThe existence of permanent scarring following self-injury invokes different types of account. This paper has explored three of these among a relatively small sample of adults, following Frank's typology of chaos, restitution and quest.


Individuals with particular genetic backgrounds develop immune responses to wheat proteins and become ‘gluten-sensitised’. Mucosal pathology arises through activated mucosal T lymphocytes, resulting in a graded, adverse reaction between particular genes and wheat proteins. Given these varied influences, the Marsh Classification broadly itemises those stages through which a normal mucosa (Marsh 0) evolves in becoming ‘flat’ .Recently, Oberhuber and colleagues suggested that Marsh III lesions required subdividing into a, b, c categories. We critically examined these subdivisions by means of correlative light and scanning electron microscopy (SEM). Our results demonstrate that Oberhuber’s classification is untenable. In our view deriving from our observations, the artificial subdivisions proposed by those authors actually reflect misinterpretations of the true architectural contours of flat mucosae. Although these workers refer to “villous projections”, SEM demonstrates that no such structures are present on flat - or immediately recovering – mucosae. Our data revealed on the surfaces of flat (Marsh III) mucosae, large open “basins”, surrounded by raised collars - the latter, when viewed in histological section, being easily misconstrued as “villi”. It seems that with subsequent upward growth, these collars coalesce into low ridges, thence becoming broader and higher convolutions. It is noticeable that there are more open spaces on the surfaces of flat mucosae than was appreciated hitherto. We conclude that Oberhuber’s revisions of Marsh III into three subcategories , are misinterpretations of the histological appearances of flattened mucosae. Therefore, histopathologists when classifying celiac mucosae, since they add nothing either of diagnostic, nor prognostic, value should resist these subcategories. The mucosal response to wheat protein ingestion in genetically predisposed subjects has, over the recent years been shown to be increasingly complicated. It is no longer valid to define “celiac disease” solely in terms of a severely damaged, flat with complete effacement of its villi. However, that was the accepted position until 1992 when one of us established a classification identifying the prominent immuno-histopathological phases through which the mucosa passes in becoming flat , and the relevant genetic background, initiates mucosal damage through activation of intestinal CD4+ TCR + T-cells within the lamina propria .before mucosal damage has begun. In other words, no individual destined to become gluten-sensitised, is born with an abnormal mucosa. The damage incurred is clearly secondary to immunological processes triggered within the mucosa, and exacerbated by additionally recruited inflammatory mechanisms contributing to cell loss, tissue damage and mucosal remodelling  celiac lesion is perforated by several openings , which fWith the SEM, flat mucosae demonstrate three characteristic features : (a) ext Second, we wish to emphasise that the large openings on the surface of flat mucosae are not individual crypt tubes, as originally thought, but substantial “basin-like” cavities , rangingraised to around ~200µM above the openings of individual crypts, the latter openings also occupying the furrows between the edges of these lozenge-shaped mucosal elevations  has considerable significance in terms of the mechanisms causing villous effacement. This feature is dealt with in our discussion below, our argument being that villus effacement is not an “atrophic” process, and that “atrophic” remnants of villi are not scattered across the surfaces of severely flattened (Marsh III) mucosae. When the sequence in mucosal flattening was first recognised , it was  A representative view  is from Presumably, in the absence of dietary gluten, these emerging cells are now able to survive for a longer period on the mucosal surface thus to contribute to the regenerative process. However, despite its flatness, vertical sections through this area could both produce differing appearances, dependent on where a random plane of sectioning happened to pass. For example, through one plane the mucosa would look entirely flat, while with another section-orientation and slight difference in sectioning angle, a view from a section taken across these elevated collars would appear to be of a lesser degree of flattening, and even suggest the presence of “villi”. However, no such conclusion is, in fact, possible, as evident from the SEM appearances.  As we have stressed, in regard to the earliest phases in mucosal regeneration, attention has to be focussed on the crypt collars. These not only become more prominent, but also taller with time. Despite the dietary control, the surface characteristics of the mucosa change very slowly. However, with progressive regeneration, it would appear that adjacent collars fuse with each other, forming low ridges, which after further enlargement, become, as seen through the dissecting microscope, higher and wider convolutions. However, those final stages in mucosal regeneration are not our present concern. The biopsy pictures shown here reveal how easy it is for sectioned projections (crypt collars or early convolutions) from the epithelial surface to be misinterpreted as “partial” or “completely “atrophic villi, when no such structures actually exist. It is necessary to control such interpretations of isolated sections with parallel, panoramic views taken by SEM of the same specimen, as these figure plates -6 so poi Our study brings to light structural features of so-called “flat” (Marsh Type III) celiac lesion as observed by SEM. These features appear not to be widely appreciated although they considerably temper interpretations of the mucosal surface, especially if based solely on inspection of one or two histological sections alone. Together, our results demonstrate that: (i) there are no “villi” associated with any grade of a flattened mucosa (ii) there are basin-like openings (or wells) up to 200 µM or more in width into which several individual crypt tubes open, and whose periphery is associated with concentric rings of surface enterocytes (“collars”) (iii) basins seem to be present on the surface of the large mosaic plateaux which comprise the surface of some mucosal specimens and whose presence requires explanation, (iv) misinterpretations of so-called “villi” are, in fact, cross-sections through raised crypt “collars” on the mucosal surface and (v) the (re)-formation of villi is, in fact, a very late occurrence in the regenerative process, deriving from convolutions which, themselves, derive from the progressive merging of elevated crypt collars. The progressive elevation and enlargement of crypt collars presumably progresses as the surface epithelium stabilises, following dietary gluten withdrawal. On these grounds, the misinterpretations occasioned by Oberhuber’s team in their attempt to re-classify the Marsh III lesion into three new, discernible levels: a, b, and c, become apparent. That new sub-classification is impossible to substantiate on the basis of our demonstration of surface basins, crypt collars and their progressive enlargement as the epithelium stabilises, once gluten restriction is imposed and the cells no longer are desquamated in high numbers from the mucosal surface.  Further problems with Oberhuber’s paper  rest on  First, no independent proof is offered to confirm that these are “villi”. More importantly, no definition of “atrophy” is given. The description offered for their  Second, the so-called “villi” are hardly any shorter or longer than those purported to be discernible in  Third, what are their specific criteria for defining the end product as “atrophic”? Similar objections apply to the more recent paper by Dickson and colleagues  whose in The structure of the jejunal mucosa is extremely complex, a complexity not evident when only thin, individual sections of the mucosa are observed in isolation. There is one study known to us in which that complex structure has been realised, through the construction of wax models of mucosae obtained from three, apparently normal human subjects . Those w Moreover, crypts were shown by these models  to open  A further critical aspect of the mucosa is raised by the question why the mucosal surface is divided into large, irregularly-shaped plateaux, and what possible bearing these could have in terms of villous effacement. It is our view that the mosaic is related to the process (es) of villous loss. Therefore, we suggest, occurs by two concurrent processes – (a) progressive reduction in the height and in the widening of villi, but accompanied (b) by the upward growth of the inter-villous ridges identified by Loehry & Creamer . Thus, araised up to a maximum height of approximately 200µM abovethat level, corresponding to the variable height of the mosaic plateaux. That is, mosaic plateaux, comprising conglomerations of many villi, represent villous territory, and not that of crypts. Analysing upper mucosal cells for the RNA gene transcripts underlying synthesis of these digestive enzymes could reconfirm such a view. Moreover, such data would provide incisive criteria for the contested decision for distinguishing precisely where crypts terminate, and villous territory begins, a problem, which could put in jeopardy the recent analysis based on villous heights and crypt depths by Taavela and colleagues  are those in which the processes of effacement have now removed all trace of the mosaic superstructure. It may be these ‘end-stage’ specimens that are becoming non-regenerative and therefore, in this extreme, truly “atrophic” (with or without some form of lymphomatous process in progress) – the original Marsh IV category. But here again, we have no idea whatsoever as to the mechanisms, which prevent mucosal regeneration taking, place, and how these processes impinge on a failure of crypts to deliver new regenerative cells. This, therefore, calls for a completely renewed initiative in determining why some crypts regenerate, while others fail.expansion of lamina propria volumes, revealed by computerised morphometry, as flattening progresses . They might possibly lead to newer, stringent diagnostic procedures as knowledge of the earliest phases involved in initiating the involution of villi are set in motion. What is clear, however, is that the mosaic slabs should be regarded as an amalgamation of villous epithelial cells together with their associated underlying connective tissue matrix, including a remodelled microvasculature. On those grounds alone, there could be no possibility of an atrophic process applied to single villi, as implied in the paper of Oberhuber and colleagues. Despite these considerations, our message is clear. Oberhuber’s modifications to the original Marsh classification have been shown, in this study, to be grounded on an incorrect interpretation of the crypt-villus interzone, and in particular, to a failure to appreciate the presence of crypt collars and their subsequent amalgamation into ridges and thence to higher, fatter convolutions. For this kind of analysis, it is evident that histological observations require independent control through a monitoring of surface ultrastructure. Only in that way can the information obtained from thin vertical sections be fully understood, in relation both to the surface ultrastructure of any flat mucosa, and how the varied structures on the surface progressively change as regeneration occurs. Since regeneration of flat mucosae demonstrably occurs, the continued use of “atrophy” terminology  is likew‘for a standardised report scheme for pathologists’ – or for anyone else, for that matter. It is surprising that their conclusions have been followed and adopted so widely without logical and critical evaluation. We strongly disagree with the conclusions of Oberhuber and colleagues and do not believe that they offer a sound basis


MAastrIcht Nurses Activities INventory (MAINtAIN), an inventory assessing a) the extent to which nursing staff perceive to perform behaviors that optimize and maintain functional activity among nursing home residents and b) the perceived barriers and facilitators related to this behavior.Functional decline is common in nursing home residents. Nursing staff can help prevent this decline, by encouraging residents to be more active in functional activities. Questionnaires measuring the extent to which nursing staff encourage functional activity among residents are lacking. In addition, there are no measurement instruments to gain insight into nursing staff perceived barriers and facilitators to this behavior. The aim of this study was to develop, and study the usability, of the N = 3) and individual interviews (N = 14) with residents and staff from nine nursing homes in the Netherlands. Usability was studied in a cross-sectional study with 37 nurses and certified nurse assistants; data were analyzed using descriptive statistics.Using a mixed-methods approach the MAINtAIN was developed and its usability was studied. Development was based on literature, expert opinions, focus group  contains supplementary material, which is available to authorized users. With increasing age, the risk of functional decline increases. This is one of the major risk factors for older people to transfer to a nursing home , 2. OnceAlthough nursing staff are not the only ones who can play a role, it is particularly relevant for them to provide care that optimizes the functional level of residents as they are generally the professionals that spend time with residents during moments and activities that allow residents’ physical engagement. They can encourage residents and provide them with opportunities to be active during daily care activities, instead of taking over the care. However, nursing staff may experience certain barriers that might make it difficult for them to provide the best possible care with regard to optimizing functional activity among nursing home residents . IdentifBefore nursing care can be improved, it is essential to gain insight into the care nursing staff currently provide. Although studies measuring low activity levels of residents –5 indicaThe aim of this study is to develop a usable inventory assessing a) the extent to which nursing staff perceive to perform behavior to optimize and maintain functional activity among nursing home residents and b) the perceived barriers and facilitators related to this behavior. This article describes the process of developing, and studying the usability of, the MAastrIcht Nurses Activities INventory (MAINtAIN).To develop and study the usability of the MAINtAIN a mixed-methods approach was used, involving a multidisciplinary group of stakeholders. The process consisted of four steps see Fig. . The resIn the first step, the content of MAINtAIN-behaviors and MAINtAIN-barriers was determined in two separate, parallel processes, as is shown in Fig. Based on previous literature, a list of nursing behaviors that may lead to an improvement in functional activity among nursing home residents was formulated. Nursing behaviors focusing on activities that could be incorporated into daily nursing home care were taken into consideration. Sources were retrieved from the PubMed, CINAHL and Google Scholar databases. Search terms included ‘nurses’, ‘behaviors’, ‘interventions’, ‘function’, ‘functional status’, ‘nursing home residents’, ‘activities of daily living’, and ‘older people’. In addition, snowball search techniques were used, meaning the reference lists of relevant articles were searched for new relevant literature. Furthermore, a search for specific interventions in evidence-based guidelines and protocols, and textbooks was performed.n = 9), at Zuyd University of Applied Sciences (n = 2), and at a nursing home (n = 1) in the south of the Netherlands. Eight of these experts were or had been active as registered nurse (RN). The experts were asked to rank the listed behaviors according to their feasibility and relevance in contributing to the functional activity of nursing home residents. Extra behaviors deemed important could be added. Based on these rankings and the comments of the experts, authors NOK, GARZ, and GJJWB made a selection of behaviors to be incorporated in MAINtAIN-behaviors.To determine which of the listed nursing behaviors were relevant for the inventory, the list was sent to 12 experts, working in the field of elderly care or with a nursing background. These experts worked at different departments of Maastricht University . In addition, these databases were searched for existing questionnaires measuring such barriers or facilitators. Search terms included ‘function’, ‘functional status’, ‘barriers’, ‘facilitators’, ‘nursing home’, ‘older persons’, and ‘nurses’. Although the primary interest was in questionnaires assessing barriers or facilitators specifically related to optimizing functional activity, questionnaires measuring barriers and facilitators in general were also taken into account. Snowball search techniques were used as well.Second, to ensure that MAINtAIN-barriers comprised issues residents and nursing home professionals encounter, focus group interviews and individual interviews were conducted. Residents and staff were recruited from nine nursing homes of two large long-term care organizations in the south of the Netherlands. Although nursing staff will be the end users of the inventory, a rich information base was ensured by recruiting a heterogeneous sample of participants, based on educational backgrounds and professions.n = 1), ward managers (n = 2), physiotherapists (n = 3), and a nurse practitioner (n = 1). The second group consisted of CNAsn = 2), RNs with 4 years of secondary vocational training (n = 3), and a bachelor’s prepared RN (n = 1). The third group consisted of a CNA (n = 1) and RNs with 4 years of secondary vocational training (n = 3). A topic list was used to guide the focus groups. At the end of each session, barriers and facilitators to optimizing functional activity among nursing home residents were grouped according to different levels based on work by Grol and Wensing [To begin, three focus group interviews were conducted. To promote an environment in which participants felt comfortable talking , homogen Wensing : the innn = 3), CNAs (n = 3), a bachelor’s prepared RN (n = 1), a nursing home physician (n = 1), a physiotherapist (n = 1), a location manager (n = 1), a policy officer (n = 1), and residents  (n = 3). The individual interviews included topics that were also discussed in the focus group interviews.Subsequently, 14 semi-structured individual interviews were conducted with people not participating in the focus groups, i.e., RNs with 4 years of secondary vocational training (All interviews were audio-recorded (after the participants gave written informed consent), transcribed and analyzed by author NOK. First, all relevant text was highlighted. Next, the content of the interviews was coded. A directed content analysis approach  was usedBased on the data collected in Step 1, author NOK formulated preliminary items for both sections of the MAINtAIN. Multiple items covering the same barriers or facilitators were formulated in order to select the most appropriate items in the next step. Two experts on questionnaire development were consulted regarding methods to prevent social desirability bias when formulating items.n = 9). The experts individually appraised the inventory for missing or redundant items and checked if the items covered the aim of the inventory. In addition, they appraised the order and wording of the items, and the layout of the inventory. Afterwards, the inventory was revised according to their feedback, resulting in a version of the inventory used to study the usability.To ensure content validity, the initial versions of the inventory were presented to experts in different disciplines. First, while thinking aloud, a CNA completed the inventory in the presence of author NOK. Ambiguous items were pointed out and difficulties and possible solutions were discussed. In addition, for items measuring the same concept, author NOK and the CNA discussed which option was most clear. Furthermore, the suitability of the response options was evaluated, by discussing which, and why these, response options were used by the CNA. Consequently, the inventory was revised where necessary. Next, authors NOK, GARZ, and GJJWB independently checked if the formulated items still corresponded with the concepts they were intended to measure. Differences in opinion were discussed until consensus was reached. After revisions, the concept version of the inventory was presented to experts in research and practice related to older persons or implementation science  versus those that were expected to be not, the non-mobility group . In addition, to check the discriminative ability of the inventory, bar charts were produced separately for the general population and the subgroups. Subsequently, based on floor and ceiling effects or bar charts, authors NOK, GARZ, and GJJWB judged and discussed whether or not items should be removed or changed. The outcomes of the usability study resulted in the final version of the MAINtAIN.The literature search yielded four key sources that were used to formulate a list of nursing behaviors that could potentially optimize functional activity –19. ListOverall, expert’s ranking of the nursing behaviors showed that they deemed the behaviors related to household activities as particularly important opportunities to optimize functional activity. Most nursing behaviors related to general activities (grouped into the category ‘miscellaneous activities’) were deemed relevant as well. Some behaviors were perceived as redundant, not applicable to psychogeriatric residents, or not suitable in all nursing homes, and therefore the removal of these behaviors was advised (for example: ‘encourage residents to buy groceries’). The final selection of the ADL-related nursing behaviors included behaviors that encouraged independence in eating, dressing, moving about the ward, and personal hygiene. The behaviors covering household activities included the encouragement of small activities that could be performed on the ward, for example, preparing sandwiches. The miscellaneous activities were a diverse selection ranging from ‘encouraging informal caregivers not to take over activities’ to ‘discussing activities from the past and trying to maintain them’.The search in the scientific databases resulted in four main articles that provided insight into possible barriers and facilitators towards optimizing function , 20–22. Next, focus group and individual interviews provided insight into barriers and facilitators specifically related to optimizing functional activity among nursing home residents, as experienced by nursing staff or residents on a daily basis. Analysis of the relevant data showed that the barriers and facilitators were related to all pre-determined levels; three were related to the innovation, eight to the residents and informal caregivers, eight to the professionals, nine the social context, and eleven the organizational and economic context. The exposed barriers and facilitators included, for example, the attitudes of residents, low priority, the support of a manager, and courses provided.N = 2) recommended the formulation of items on a less individual level, i.e., instead of stating ‘I encourage…’ the items stated ‘On my ward, we encourage residents to help set and clear the table’, or ‘On my ward, we compliment residents when they dress and undress themselves.’ In MAINtAIN-barriers, comprising 62 items regarding perceived barriers and facilitators, a distinction was made between barriers and facilitators related to residents , to professionals , to the social context , and to the organizational and economic context . For practical reasons, barriers related to the innovation were grouped with those related to the residents.Based on the outcomes of Step 1, items were formulated for both parts of the inventory. In MAINtAIN-behaviors, comprising 25 items regarding the behaviors nursing staff can perform, a distinction was made between nursing behaviors related to ADL, household activities, and miscellaneous activities. To reduce the risk of socially desirable answers, experts (N = 9) reviewed the content and layout of the inventory and generally agreed with both. Their feedback led to minor changes in the formulation of items to prevent ambiguous phrasing and acquiescence bias, the tendency of respondents to respond to all items in the same way. Some positively phrased items were changed into negatively phrased items and vice versa. The revisions resulted in an inventory comprised of a total of 58 items: 22 in MAINtAIN-behaviors and 36 in MAINtAIN-barriers.The interview with the CNA led to a change in the wording of some of the items and a reduction of the number of items. Two redundant items from MAINtAIN-behaviors and 23 redundant items from MAINtAIN-barriers were removed, resulting in 23 and 39 remaining items, respectively. Regarding the response options, the remarks of the CNA revealed that she was reluctant to use the extremes of the scale. To avoid ‘end-aversion bias’ [Of the 37 respondents that completed the inventory, 13 worked in somatic wards, 10 in psychogeriatric wards, and 14 in rehabilitation wards. The majority were CNAs (86.5 %). Table The mean response rate per item was 98.9 % (ranging from 91.9 to 100 %). The mean time required to complete the full inventory was 14 min (range 7–30 min). Respondents indicated that the domains and items were clear and that the inventory was not difficult. In addition, respondents, including the interviewed respondents, unanimously answered that the response options were clear. The interviewed respondents provided only minor suggestions regarding the wording of the items.Analyses revealed that five of the 58 items showed a floor- or ceiling effect, i.e., one of the extreme response options was chosen by >50 % of the respondents , was developed. The MAINtAIN gains insight into the extent to which nursing staff perceive to perform behaviors to optimize functional activity among nursing home residents, and their perceived barriers and facilitators related to this behavior. It assesses nursing staff behavior during a broad range of activities, i.e., ADL, household activities and miscellaneous activities. Additionally, it addresses barriers and facilitators related to different levels, i.e., the residents, the professionals, the social context, and the organizational and economic context. A cross-sectional study showed that the MAINtAIN is a usable inventory to collect data on these topics.The comprehensive development process of the MAINtAIN  resulted in an inventory including behaviors, and barriers and facilitators that are considered important by the stakeholders. Although nursing staff will be the end users of the MAINtAIN, the heterogeneous sample of experts involved in the study warrants the inclusion of important behaviors, barriers and facilitators. According to different experts the selected nursing behaviors are both relevant and feasible, and together they provide an overview of the extent to which nursing staff perceive to perform functional activity-optimizing behaviors. In addition, the broad range of barriers and facilitators selected here are relevant to nursing staff, covering topics on several levels, from factors relating to residents to factors relating to the organizational context. Mapping such a variety of factors is important in order to address factors to improve care .Although the MAINtAIN was developed in the Netherlands, the incorporated nursing behaviors, barriers and facilitators are generalizable to other countries with different healthcare systems as international literature was used to develop the inventory. Barriers and facilitators included in the MAINtAIN overlap with those described in previous research regarding function focused care , 20. In To our knowledge there are no other inventories or questionnaires available that measure the extent to which nursing staff report to provide functional activity optimizing care, as MAINtAIN-behaviors does. Although studies indicate that nursing home residents are largely inactive –6, and pN = 37), this was not possible in the present study. Second, although research shows that social desirability bias does not, by definition, have to occur [There are some limitations to this study that should be addressed. First, this article focuses on the development process of the MAINtAIN. Although content validity was assessed, it is recommended that future studies extensively investigate multiple psychometric properties of both parts of the MAINtAIN. Such a study could address the MAINtAIN’s construct validity, reliability, and its sensitivity to change. For MAINtAIN-behaviors the internal consistency of the items related to ADL, household activities, and miscellaneous activities can be determined. Due to the small sample size of our usability study (to occur , nursingThe next step is to administer the MAINtAIN on a large scale. Not only would this make it possible to investigate its psychometric properties, the information obtained with the MAINtAIN would provide researchers and practitioners opportunities to improve nursing care. Based on this information, strategies can be developed to promote nursing behavior, tackle specific barriers, and promote certain facilitators. This could lead to an improvement in nursing behaviors and eventually lead to optimized or maintained functional activity among nursing home residents.Furthermore, the MAINtAIN offers nursing homes the possibility to see where their priorities lie, what kind of nursing behaviors are performed according to the nursing staff, and to see what barriers and facilitators are particularly relevant for their nursing home. The outcomes of the current study showed that the MAINtAIN is easy to use in daily practice. Nursing staff themselves can assess factors that have to be addressed in order to improve care.The MAINtAIN is a usable method for researchers and nursing staff to obtain insight into the perceived behaviors nursing staff perform to optimize and maintain functional activity among residents. In addition, it maps nursing staff perceived barriers and facilitators to this behavior. Although further psychometric research is recommended, the present inventory provides researchers and practitioners with the opportunity to gain insight into these factors and eventually an opportunity to improve care in nursing homes.


It is currently unclear whether an adolescent with 47,XXY Klinefelter syndrome will be better off having testicular sperm extraction (TESE) performed in an effort to ‘preserve fertility’ for the future or, alternatively, should be advised to simply wait until adulthood when he and his partner are ready to begin a family. This report will provide data suggesting that there is no obvious ‘preservation’ benefit and that recommending TESE to the 47,XXY boy and his parents may not be as helpful as it might appear and may be overly aggressive. When testicular sperm extraction (TESE) became a standard technique for the discovery and retrieval of sperm in the NOA patient, it was subsequently successfully applied to KS adults, who had previously been considered sterile. Published reports from many different centers describe rates of sperm retrieval in these 47,XXY adults to be approximately 50–70%, along with excellent pregnancy rates and healthy 46,XY or 46,XX offspring, as recently reviewed by Majzoubet al.2.Klinefelter syndrome (KS)  is the most common chromosomal disorder in men, affecting one in 600 newborn males, and is etiologic in up to 11% of non-obstructive azoospermic (NOA) males7. Based upon the knowledge that not all adult KS males will have spermatozoa harvested upon TESE, several clinical investigators have pursued a course of action to determine if TESE should be offered and applied to the 47,XXY adolescent in order to “preserve fertility potential”9. This submission will address this vexing question from many different angles and try to answer whether this is an overly aggressive approach with more harm than benefit or if this is an appropriate strategy with more benefit than harm.For a variety of reasons, KS may occasionally be diagnosed prenatally, in infants, in young boys, or in adolescent males10. More recently, Aksglaedeet al. reviewed 166 non-mosaic KS boys and demonstrated that there is no rapid, inexorable decline in their serum testosterone values  spanning early adolescence to adulthood11.The underlying tenets for recommending TESE in adolescent KS males is that fertility potential and the presence of testicular spermatozoa are maximal at puberty or just after, and that both are precipitously and irrevocably lost over the next several years. Is that actually true or has fiction become belief that has become fact that has become dogma? Additionally, some feel that testosterone levels plummet after puberty and require replacement, and TESE should be carried out prior to that. However, in 1985, Saltenblatt concluded that testosterone levels settle at low-normal values for most with KS after puberty and remain at those levels into adulthood14. Even after invading and populating the emergent seminiferous tubules, numerical increase continues until birth. With the onset of the mini-puberty  during the first few months of life, proliferation and differentiation (of some) to type A dark (Ad) spermatogonia commences and, when this temporally limited hypothalamic-pituitary stimulation stops, the spermatogonia become quiescent until puberty, although there may be a gradual diminution in the absolute numbers of spermatogonia in the first year of life16. The vast majority of these resting cells would be 47,XXY but, occasionally, it is thought the supernumerary X chromosome is lost during an earlier mitotic replication and the resultant spermatogonial stem cell or type Ad spermatogonia is, therefore, normally diploid 17. These are thought by many to be the cells that eventually, upon initiation of puberty, will be capable of completing the full process of spermatogenic differentiation , their progeny being fully functional haploid spermatozoa. However, the more numerous, by orders of magnitude, 47,XXY spermatogonia suffer a meiotic block, arrest, and become apoptotic18. Whether it is simply the trisomic state or the overexpression of X-linked, testis-expressed genes that lead to this demise is unclear, although the latter hypothesis has more evidence behind it20. The legacy of this self-destruction is wide swaths of the testicular parenchyma with seminiferous tubules that are empty ghosts or unrecognizable and fibrotic. By happenstance, every once in a while, a seminiferous tubule in which a 46,XY spermatogonium found itself at home survives, incubates, and cultivates the normal machinery responsible for complete spermatogenesis21. So, if 47,XXY spermatogonia have no ability to birth whole spermatozoa, is there a reason to harvest and cryopreserve them before they become apoptotic early in puberty? The answer would appear to be “no”, as concluded by Oates22. Indeed, with regard to fertility preservation in even younger males with KS, as Gieset al. cautiously posit, “given these controversies, banking testicular tissue from prepubertal KS boys should be performed only in a research framework”23, even though parents of KS boys would be in favor of it24.At conception, the nascent embryo is 47,XXY and all cells, including those destined to become gonocytes and eventually spermatogonial stem cells, will have this same chromosomal constitution. As the spermatogonial stem cell precursors and stem cells themselves migrate to the gonadal ridge from the yolk sac, they expand mitotically in number and begin the slow process of differentiationGiven the above discussion that spermatozoa arise from random 46,XY spermatogonia scattered about a sea of fibrotic tubules, the next obvious question in the search to answer whether it is advantageous to perform TESE in an adolescent KS male as opposed to waiting until adulthood would naturally be whether the chance of finding sperm upon TESE is greater in the adolescent than it is in the adult. If so, that would be a rationale for TESE in these younger males, but if not there would seem to be no benefit in doing so. That is, is there a great likelihood that these competent and capable 46,XY populated seminiferous tubules will also disappear during puberty or in the next several years, perhaps collateral damage of the near total annihilation of the neighboring 47,XXY spermatogonia and their home tubules and, thusly, they and any sperm they produce should be harvested and saved for the future as soon as possible?31. Retrieved spermatozoa could even be intentionally frozen prior to use in conjunction with ICSI, as first demonstrated by Oateset al., and this is now routine clinical practice32. In their recent systematic review and meta-analysis, Bernieet al. concluded that the sperm retrieval rate (SRR) was higher with micro-TESE (involving the use of an operating microscope) than with conventional TESE33 and approximates 50–60%, depending upon the center and the surgeon. Tournayeet al. initially pioneered its application in adult KS men, and the first pregnancy was documented by Palermoet al.35. Numerous subsequent publications confirmed this initial proof of concept and added to the growing cumulative statistic of approximately 50–60% likelihood of sperm retrieval in this subpopulation of NOA men2.Sperm seen within the ejaculate are probably only a small percentage of the total number produced in the testis when viewing the entirety of the testis parenchyma as a single manufacturing unit. When that output falls below a certain minimum number, but not to zero, no sperm can be found downstream in the seminal fluid, but some of the relatively few that have been created may still be identified when combing through and dissecting that testis tissue factory itself. Shortly following the introduction of intracytoplasmic sperm injection (ICSI), it was realized that testicular sperm was capable of fertilization, embryo development, and pregnancy. TESE quickly became the standard therapy offered to men with NOA of all types in an effort to find and use individual spermatozoa to achieve male genetic parenthoodet al. first reported in 2001 the use of TESE in an adolescent male in order to ‘preserve’ his fertility before he was started on spermatogenically suppressive testosterone replacement36. The authors carefully presented their data and the decisions that led the patient and his parents to choose this approach in a cautionary tone, advocating only that TESE in the adolescent KS male needed more study and consideration before becoming viewed as routine, always beneficial, and standard. Building upon that idea, a handful of subsequent reports presented data on testis biopsy or TESE in very young/adolescent KS boys with varying results. In 2004, Wikstromet al. reported that they were not able to find any spermatozoa in the histological preparations of single-site biopsies on 14 boys aged 10–14 years37. They noted a minimum number of type A pale (Ap) and Ad spermatogonia in seven of the 14, all within the age range of 10–12.5 years, but no spermatogonia of any kind in the remaining seven who had an age range of 11.7–14 years. In 2012, Gies and colleagues, who also performed a single-site biopsy but of “large volume”, reported that they too could not document full spermatogenesis on histological analysis in seven KS boys, aged 10.2–15.6 years38. Spermatogonia were seen in four of the seven in the upper age range of their group (13.3–15.9). Another seemingly disappointing report by Rivaset al. in 2013 stated that only one KS adolescent out of five operated upon had spermatozoa visualized, even though they carried out single-site bilateral TESE39. Mehtaet al., also in 2013, using a microsurgical TESE approach reported positive news with sperm discovery in seven of 10 adolescents, ages ranging from 14–22 years: an SRR of 70%40. Plottenet al. in 2015 described an SRR of 52% in “young” KS patients, aged 15–239. Finally, Nahataet al. reported a 50% SRR in 10 adolescent KS boys aged 15–23 when performing microTESE41. Sperm was identified in five KS boys  but was not discovered in the remaining five KS boys , indicating no real pattern or prediction based upon age at the time of TESE.Damaniet al. performed exactly that study showing prospectively, as detailed previously, an SRR of 52% in their “young” group and 62%  in their “adult” group, aged over 23 years9. At Weill Cornell Medical College, Dabaja and Schlegel confined their reported results to 127 adult KS men and showed an SRR of 65%, which is similar to that of 70% (7/10) reported by Mehtaet al. at the same institution42. As stated and suggested by Nahataet al. in their conclusion, “…there is no clear benefit to performing TESE/unilateral microTESE in adolescence…”41. In total, then, although perhaps intuitively satisfying, sensible, and gratifying, SRRs in the small numbers of adolescent KS boys subjected to TESE appear to be the same as those SRRs in adult KS men subjected to TESE. In general, the sperm retrieved from the adult is used immediately as the source of sperm for ICSI and not cryopreserved. Will cryopreserved spermatozoa or testis tissue be equally as useable and successful after years of storage as would necessarily be the case if harvested from a young boy not ready to conceive for years? Future reports detailing the success of using this sperm (obtained many years previously) will be necessary to answer this question. This will include those adolescents who have had microTESE prior to the institution of spermatogenically suppressive exogenous testosterone therapy.As above, SRR rates of TESE in KS adults approximate 50–60%. But are there data to compare within the same program, adolescent to adult? Plotten43. Although these conclusions have been made based on a limited data set from Okadaet al.43 , this is by no means certain. As a matter of fact, the data from the Cornell group44 show that the SRR in KS men was 71% in the 22–30 year age group, 86% in the 31–35 year age group, and 50% in the 36–50 year age group. The group age intervals are not of the same time spans, and the SRR is higher when you are 33 than when you are 26  and is still 50% when greater than age 36. As they state, “In addition, ROC analysis of these data yielded an AUC of 0.58, indicating that there is no best age to predict SRR based on our data”. So it appears that even in the publications discussing whether or not TESE rates are less in the ‘older’ adult than in the ‘younger’ adult (aged 35), there is still a rate of success that is close to, and not much better than, that claimed for adolescents.This is another way of asking the same question: should we be performing TESE in the adolescent to preserve fertility that will be irrevocably lost as the years pass and we do nothing? This notion also arises from very limited data suggesting that sperm production, as determined by results of TESE (namely SRR), declines after a certain age (35 or so) and as such it might be best to harvest tissue as soon as the diagnosis is made, whatever the ageFinally, when comparing overall adolescent rates to overall adult rates of TESE success, and although difficult to prove, there would be little reason to believe that sperm production would magically begin years after the onset of puberty, e.g. age 16 or 17. Therefore, since 50 out of every 100 KS boys have sperm recovered in their testis tissue and 50 out of every 100 KS adults have sperm recovered from their testis tissue, and if a decline in sperm production occurred during this time frame to zero values of, for argument’s sake, 10%, then 10% of maturing KS males (adolescent to adult ages) would have to begin to produce sperm to keep the two groups equivalent, as far as SRR rates go. Is it likely that 10 (or whatever absolute number is chosen) males have a precipitous and total decline in sperm production as they advance from adolescence into adulthood and, to keep the rates of what we actually find upon TESE balanced, 10 males begin to suddenly produce sperm as they advance from adolescence into adulthood? Or is it more likely that those who have seminiferous tubules populated by 46,XY spermatogonia capable of undergoing the full and complete sequence of spermatogenesis maintain those same tubules throughout the years of adolescence and on into adulthood? It may be the exact same individuals who have spermatozoa found in adolescence that are those found in adulthood. Where would the benefit be? Harm could certainly come to the adolescent and his parents when no sperm are retrieved—a potential heavy burden to carry in the difficult teenage years.in vitro cycle for her is what they would like to do in an effort to build a family. Since the incidence of KS syndrome is 1:600, practitioners of all types are going to have many KS males as their patients, will be involved in this debate and controversy, and will need to be aware of the issues involved. This list includes, but is not limited to, obstetricians (amniocentesis results), pediatricians , endocrinologists (detected during exploration for hypogonadism and failure to initiate puberty in the most severely affected), urologists, and reproductive endocrinologists (elucidated at the time of an infertility work-up). As it usually is, the final answer will probably lie somewhere in the middle and be determined on an individual patient-specific basis.The basic biology of spermatogenesis and how it is altered in the KS testis is important to appreciate when trying to formulate appropriate clinical pathways vis-à-vis fertility and biological paternity. Although it seems obvious to some that KS boys benefit or even require testis tissue surgery and freezing of any sperm found as soon as they are identified in the adolescent years, the data do not support the temporal necessity to do so. It may be just as reasonable, if not more so, to perform that same surgery at a later date, in adulthood when the patient and his partner can make an informed choice as to whether an operation on him and an


Those working today with individuals with intellectual and developmental disabilities (IDD) are often not aware of the dark side of our history concerning the treatment of this population and why we, some 150 years ago, made institutions or state schools for them , cousin of Charles Darwin (1809–1882), coined the term “eugenics.” In his book “Inquiries into human faculty and its development” from 1883, Galton loosely defines eugenics as “the cultivation of race,” or “the science of improving stock”  and his test to measure intelligence, first published in 1905. The Binet test, originally intended to identify mentally retarded children within the school system, strengthened the eugenics movement by giving it additional impetus.In 1906, Dr. Henry Herbert Goddard (1866–1957) was the Director of the Research Department at the Training School for the feeble-minded in Vineland, NJ, USA. Opening its doors in March of 1888, the Training School in Vineland was considered to be the third institution of its kind; the first opened in Massachusetts in 1848 and the second in New York in 1852. It was at the New Jersey Training School that Binet’s Intelligence Test was translated from French to English and readied for practical application under Goddard’s direction. Interestingly, it was also Dr. Goddard who coined the term “moron.” . Binet’s test became known as an IQ test.In 1912, “The Kallikak family”  written This work portrays, according to Goddard, an actual case study of the family of one of the feeble-minded residents under his care at the Training School. He gives her a fictional name, Deborah Kallikak, and goes on to trace her family back to her great–great–great grandfather Martin Kallikak Sr., a Revolutionary War soldier who had an unfortunate liaison with a young woman who was “feeble-minded and degenerate.” This faux pas, according to Goddard, led to “an appalling amount of defectives.” The descendants numbered 480, and of those at least 332 were determined to be “defective” according to Goddard’s research methodology.The results of Goddard’s study, according to Goddard, proved that feeble-mindedness was passed from one generation to the next. He warned the reader in his final chapter, in regard to the woman with whom Martin Kallikak Sr. had been indiscreet, “When we conclude that had the nameless girl been segregated in an institution, this defective family would not have existed.” Regarding just the Kallikak family, Goddard further adds, “Society had to pay the heavy price.” The good doctor again cautions the reader by reminding them, “There are Kallikak families all about us – they are multiplying at twice the rate of the general population.” Goddard fanned the flames of the eugenic fire until it raged out of control. It should be no surprise, with this book on the best seller list and taken very seriously indeed, there was a surge in the sterilization frenzy. Massachusetts, however, was one of the few states that did not have mandatory sterilization laws.A myriad of books with the same theme seem to have emerged between 1912 and 1930, all touting the necessity of eugenics and giving ample warning of how our society would degenerate if its principles were not followed. “Safe counsel or practical eugenics”  publisheFrom California, the first hotbed of eugenics proponents, Ezra S. Gosney (1855–1942) and Paul Popenoe 1888–1979) brought us “Sterilization for human betterment”  and later 28th US President, signed a sterilization bill that went into law. The new 1911 law specifically stated, “An act to authorize and provide for the sterilization of feeble-minded, epileptics, rapists, certain criminals, and other defectives.”Keeping in step with the rest of the nation, eugenics was all the rage in Massachusetts. Often touted as a progressive state, during this period Massachusetts was in many respects a bastion of backward thinking, at least by today’s standards. We found a small pamphlet from the “Massachusetts Society for Prevention of Cruelty to Children” on “The menace of the feeble-minded in Massachusetts” .A growing public sentiment requires that feeble-minded women of child-bearing age who are a burden to the community and a menace to the future well being of the race, and defectives with criminal tendencies shall be segregated … Feeble-mindedness is 80% hereditary. By segregation only can sufficient relief be obtained so that these unfortunates will not propagate their kind … Segregation is humane and effective, and a good financial investment for developing greater prosperity and happiness in the future.IdentificationRegistrationEducationSupervisionSegregationThe Commonwealth has recognized the importance of a practical mental hygiene program, and had provided much legislation to make effective such a program. The State’s program for the feeble-minded embraces the following factors:In January of 1922, Massachusetts Governor Channing Cox (1879–1968) addressed the Massachusetts Legislature and the following is a bit of what he said:Of course, segregation was important in this age of eugenics, and interestingly the third Massachusetts “state school,” Belchertown, would have opened the same year. Just 1 year earlier, in September of 1921, Cox made history when he became the first Massachusetts governor to broadcast live. His radio debut was made in Springfield, MA, USA at the Eastern States Exhibition. Interestingly, during the 1920s “Fitter family” contests sponsored by the American Eugenics Society were quite popular at community fairs and livestock expositions. This was especially so in Massachusetts at the Eastern States Exhibition, where the best-bred humans were shown off alongside their counterparts from the animal kingdom.status quo. In 1927, Supreme Court Justice Oliver Wendell Holmes (1841–1935), a staunch supporter of eugenics, ruled in favor of the compulsory sterilization of a young woman in Virginia. The case, known as Buck v. Bell, served to authorize the legitimacy of the sterilization of defectives within the United States, especially those who were institutionalized , Spanish philosopher and novelistThe 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.