Clinical judgement is a crucial part of autism and attention deficit hyperactivity disorder (ADHD) assessments. This study aims to harness insights from psychology and sociology to explore clinical perspectives and assessment practices of autism and attention deficit hyperactivity disorder. Qualitative interviews were conducted with health care professionals (n = 17). Interviews were conducted between January and May 2019. Data were analysed using a thematic approach. Themes were sorted into two interrelated categories (1) approaches to diagnosis (2) elements of diagnosis. Approaches to diagnosis were comprised of the following subthemes: nature of diagnosis, application of diagnosis: natural and pragmatic, revisiting conceptualisations: sub-optimal practice & unhelpful diagnoses, autism and attention deficit hyperactivity disorder. Elements of diagnosis contained three related subthemes: contextualising standardised assessments, triangulating material, organisational factors. There is sometimes a pragmatic as well as nosological dimension to diagnosis. Competing desires for consistency and utility add further complexity to neurodevelopmental assessment.Autism and attention deficit hyperactivity disorder are common behaviourally diagnosed conditions. One of the key aspects of diagnosis is clinical judgement. Yet despite decades of research, it is only in recent times that researchers have started exploring clinicians’ perspectives on diagnosing these conditions. We aimed to add to this body of knowledge by conducting interviews with 17 experienced health care professionals in the United Kingdom to hear their perspectives on diagnosing autism and attention deficit hyperactivity disorder. Clinicians reflected that for some children and young people, diagnosis is reasonably straightforward; however, in other situations, decisions are made on more pragmatic grounds (i.e. will this be helpful). We identified some differences of opinion between professionals and organisation which adds to the complexity of applying a diagnosis. We recommend several areas for future research and point to some practical and philosophical implications of the work. Assessing autism and attention deficit hyperactivity disorder (ADHD) can be challenging. Clinical profiles are often heterogeneous, and comorbidities with other neurodevelopmental  and psychiatric conditions (e.g. anxiety) are common . Adding Best practice guidelines , 2018 suIn his seminal work on social construction, Most research on neurodevelopmental assessment has focused on developing standardised tools to quantify symptomology. For autism, the Autism Diagnostic Observation Schedule-2 ADOS-2;  and the Several studies have used self-report survey methods to explore HCP’s assessment practices regarding autism and ADHD. Nevertheless, earlier work  does poiFrom a psychometric perspective, the issue of an individual not fulfilling diagnostic thresholds on standardised assessments speaks to practitioner concerns regarding test sensitivity. In contrast to ‘upgrading’ a diagnosis, therefore, the diagnosis might be ‘downgraded’. Downgrading, for instance, might happen when despite meeting criteria on an assessment tool, a diagnosis is not given due to concerns about, in psychometric parlance, test specificity.This study aims to explore clinical perspectives and assessment practices of autism and ADHD through qualitative interviews with experienced HCPs. We illuminate some considerations around assessment and challenges that HCPs might encounter.We conducted semi-structured interviews with 25 HCPs, including 8 general practitioners from the National Health Service (NHS) Trusts across the United Kingdom. Findings regarding referral pathways and differential conceptualisation of attachment difficulties are presented elsewhere. Therefore, this article will focus on the interviews with the 17 HCPs from child and adolescent mental health services (CAMHS) and the neurodevelopmental teams and their considerations around neurodevelopmental assessment. Therefore, the interviews with general practitioners are not included in the current analysis. Ten participants were psychologists; two were psychiatrists; two were paediatricians; three were cognate allied HCPs. Interviews ranged from 48 to 69 min. Five participants were male, and 12 were female. Interview topics included professional background, routine clinical work, case study and referral pathways. University Ethics, The Health Research Authority and local NHS research and development teams approved the study prior to data collection. Data were collected between January 2019 and May 2019. BC interviewed all participants, and interviews took place in person or remotely (e.g. by phone or Skype). All interviews were audio-recorded and transcribed verbatim by either BC or professional transcription service. All participants gave written informed consent prior to the interview, and verbal consent was confirmed at the end of each interview.Supplement 1. All participants were asked not to reveal any personally identifiable information about any child or families they work with at the start of the interview, and questions about routine clinical work was prefaced with this reminder. Still, some changes have been made to some of the reflections (e.g. particular interests of a child) to ensure complete anonymity. To this end, at times, gender pronouns have been changed or removed.A flexible topic guide was prepared by the authors. This was based on current literature and clinical experience. Topics included professional background, routine clinical work, hypothetical case study  and referral pathways. The guide was piloted with three HCPs. An information power approach was used to inform sampling size. This interview guide including the case study can be found in As discussed above, HCPs were recruited from local CAMHS, neurodevelopmental and national specialist services. These are multidisciplinary teams, including psychologists, psychiatrists, nurses, speech and language therapists, occupational therapists, paediatricians and psychotherapists. In the United Kingdom, an assessment conducted by teams and diagnosis is often required for children and young people to access supports and services through neurodevelopmental teams. National specialist services specialise in conducting assessments in cases that are deemed diagnostically complicated or where specialist intervention is required. As such, referrals to these services have typically included a previous diagnostic assessment in a local service. Participants were recruited using convenience and snowball sampling. In order to be eligible, participants were required to have at least 3 years of post-qualification experience working with children and families and to be currently involved in clinical work. Interviews ranged between 43 and 69 min in duration, with a mean time of 59 min (standard deviation = 6.76). Twelve participants were female, and five were male. Years of experience ranged from 3 to >20 years. Ten participants were psychologists, two were paediatricians, two were psychiatrists and three were allied health professionals . We did not collect data on the number of clinical hours, which we regard as a limitation. Establishing the urban–rural divide proved challenging because national services saw young people from all over the United Kingdom.Data were analysed using the thematic approach outlined in We received feedback on a draft of the paper from a parent who had experience with the autism referral pathway. Adjustments to terminology and technical language were made following this feedback.We identified the following two overarching themes: (1) approaches to diagnosis and (2) elements of diagnosis.I think there’s value in trying to identify needs based on both diagnoses. I think it’s a shame that we’re in a medical model. The medical model has come into so many spheres that a child’s needs can’t be thought of as their needs. (Participant 08)A variety of attitudes were expressed about the utility of diagnosis. Most HCPs implicitly or explicitly suggested that diagnosis was an important tool in terms of treatment planning and opening access to supports. That is, some participants offered reflections on cases where a diagnosis was helpful in terms of giving the child and family access to groups, educational supports or, in the case of ADHD, medication. In addition, there were times when diagnosis seemed to resonate with patients at the level of identity. Nevertheless, some participants described hesitations around diagnosis. Two HCPs lamented the dominance of medical discourse in terms of describing the functional needs of children:We don’t often see this, but there are some occasions it’s partly colleagues some psychologists are not keen on the diagnostic sort of construction of a thing like ADHD. But there are sometimes literally children who are climbing up the walls in the clinics. [You] have them who actually can’t physically sit still. (Participant 14)Issues of ‘construction’ also came into view:This speaks to a common tension faced by HCPs and researchers alike, which is between the acknowledgement that the ‘object’ (i.e. diagnosis) can be both an expression of underlying biological influences and also shaped by social processes.Our motto is to not label if we’re not sure. And get another look, another opinion because once you label, it is difficult to un-label them. (Participant 01)Overall, participants tended to suggest that a diagnostic ‘label’ carried considerable weight and, as such, required a robust assessment. This involved standardised assessments, reports from multiple sources, detailing of the family history within the context of a multidisciplinary team. Overall, there was a sense in which once a diagnostic label is applied; it was difficult to remove:. . . in the old Rutter sort of phrase, you know the receptionist could diagnose the child because they’ve got every single characteristic that you classically sort of read about. (Participant 14)Most HCPs tended to speak of autism and ADHD as natural ways of describing some children’s presenting differences. Phrases such as ‘fairly straightforward’ or ‘barn door’ were sometimes applied to cases where the child had ‘classic’ features of either condition:. . . there was just nothing that . . . [laughter] . . . There’s nothing that said me ADHD. So he’s not a restless, fidgety boy, he does some stimulating behaviours, but they’re quite specific, and he’s not on the go all the time, and he’s not moving his concentration and attention seems appropriate to his cognitive levels. (Participant 03)Conversely, there were cases where the ill-fit of these categories was apparent. For example, when reflecting on a recent case, one HCP explained,Yet establishing whether a child fulfilled diagnostic thresholds was often not straightforward. Diagnostic decisions seemed to be complicated by a range of factors, including developmental history, genetic or mental health comorbidities, or ‘subtle’ features. When responding to these cases, diagnostic decisions tended to hinge more explicitly on pragmatic considerations such as whether the child or the family would benefit from the diagnosis.Natural and uncertain cases bring to the forefront competing desires or requirements on the ‘object’ (i.e. autism or ADHD). On one hand, there is a desire to apply diagnosis consistently. Among other things (e.g. treatment planning), this desire safeguards services from saturation and protects the integrity of the classification. However, there is also a requirement for the diagnosis to be useful. When the child’s behaviour is a fit, the diagnosis is ‘natural’, and these desires can proceed with little interruption. However, in uncertain cases, there was sometimes a need to relax diagnostic thresholds to ensure the child could have access to services. This is, of course, compounded by organisational conventions which require a neurodevelopmental diagnosis to gain access to support.Participants were almost unanimous in the view that the availability of supports and services would not influence diagnostic decisions in terms of withholding a diagnosis or not ‘adequately describing the child’s needs’.Another topic on which participants seemed unanimous on was that symptoms, behaviours and characteristics needed to have an impact on functioning. As we will see in the next section, this criterion was used by at least one participant to justify removing a diagnosis at the request of the young person. or ADI; it was just a clinician meeting them and the family and getting a school report and making the diagnosis. (Participant 01)They [private consultant] was diagnosing autism sometimes not even seeing the child just talking to the parents. And nothing more than sixty minutes maximum, and we had [hundreds]of kids on their books, with diagnoses varying from social communication differences to attachment to autism spectrum, Asperger’s, pathological demand avoidance; there was no rhyme or reason why or how these came around . . . [. . .] . . . there was no standard [assessment]. None of those school-age kids had ADOSDespite perceptions that diagnoses were challenging to change, most participants indicated that they had been involved in revisiting or revising a diagnosis of autism or ADHD. Two reasons for revisiting a child’s diagnosis were identified as follows: (1) sub-optimal practice and (2) the diagnosis was considered unhelpful. Regarding the former, these assessments were often conducted by private practitioners or inpatient units and sub-optimal practices ranged from the practitioner not meeting the child to diagnosis without standardised assessments:This challenge seemed more acute for clinicians in local services. However, it is important to note, as the quotation above indicates, that most of these participants indicated that they would not dismiss a private diagnosis out of hand. Second, as discussed above, throughout the data, participants suggested that diagnosis should be helpful to the individual. Therefore, part of the discussion regarding revisiting a diagnosis focused on cases where the individual felt that it was no longer useful. HCPs indicated that people want diagnoses ‘changed’ or ‘removed’ for a myriad of reasons. Sometimes, for instance, the diagnosis no longer resonated with the child or family. Else, there were concerns regarding prejudice or exclusion from certain professions (e.g. Military). In one case, the diagnostic criterion regarding functional impairment was occasionally operationalised to remove a diagnosis.We certainly do diagnose both. The problem when a child presents, and it looks like they’ve got both is you sort of have to decide which one to do first practically, although they can sequentially run. And sometimes you’re sort of, so this is autism with some ADHD, or this is ADHD he’s a bit on the autistic spectrum. It sort of depends on what’s presenting with the most difficulty. (Participant 04)There was agreement among HCPs that a child could meet diagnostic thresholds for both autism and ADHD concurrently. Thus, sometimes diagnostic teams give a dual diagnosis or recommend further assessment for either condition. Again, diagnostic decisions were shaped by both a degree of pragmatism and the extent to which the child’s behaviour seemed a ‘more’ natural fit with either diagnosis:There was a sense that social problems, inattention, hyperactivity or sensory seeking behaviours could stem from either autism or ADHD. We identified three considerations, which feed into differential conceptualisation: (1) form/nature of behaviours, (2) function of behaviours and (3) tacit factors. Regarding the form and nature of behaviours, although reference to social problems was not uncommon in children with autism and ADHD. However, social problems caused by interrupting peers, as opposed to a lack of overt interest, tended to be viewed as an expression of ADHD rather than autism.It’s harder because it could be lots of reasons why someone’s inattentive or hyperactive. (Participant 11)By contrast, social problems resulting from sensory sensitivities were considered by one HCP as a subtle potential marker for autism. Other transdiagnostic developmental differences such as inattention and hyperactivity tended to be more challenging to untangle in terms of form:it [ADOS] enhances what you already think. So usually, if you think, ‘oh, this child feels like they’ve got autism’, you do an ADOS, and it clearly shows that they have. (Participant 10)Somewhat predictably, all participants indicated that standardised assessment tools were important sources of information in the diagnostic workup. There were some variations between services regarding the nature of these tools. This seemed driven by resourcing factors and clinician preference. Nevertheless, frequently cited measures included ADOS , ADI-R , DevelopIt’s about the ADOS, the ADI and other observations and assessments we need to do. We wouldn’t ever just take an ADOS and say yes, they meet criteria because there could be other reasons why that is. Likewise, if somebody does an ADOS and they score at below cut-off, we wouldn’t say they definitely haven’t got autism because we might take a developmental history and see them in other settings where they do look to have autism. (Participant 02)Participants seemed unanimous in the view that these assessments should be considered with other sources of information:[the child] was significantly depressed, and they did an ADOS while they were significantly depressed. And of course, eye contact was poor. Of course, they had the flat affect and all of that. (Participant 02)Indeed, an array of ‘other reasons’ for a child’s performance on these measures can be found throughout the data. In terms of child and family factors, some HCPs indicated that these tools become more challenging to interpret when there is a comorbid learning disability or mental health problem (e.g. depression). The core difficulty here seemed to be that other conditions could explain certain symptoms:instruments are good at eliciting information; scores are very dangerous . . . [. . .] . . . it’s also just true that, in a sense of understanding data, scores on instruments, for example, diagnostic instruments like the ADI and the ADOS, the SCQ, and whatever instrument it is measuring whatever; They will help you least where you need the help most. (Participant 14)Ultimately, there was a sense that scores derived from these assessments should be used with a degree of caution:Various other structured assessments for adjacent abilities or experiences can be found throughout the data. These include projective assessments, questionnaires about anxiety or uncertainty and cognitive assessments.Most HCPs accentuated the importance of collecting and triangulating information from multiple sources and stakeholders to get a sense of the child’s behaviour in different contexts. Other sources included professionals in adjacent mental health or social work teams, medical professionals, the child’s extended family (e.g. grandparents) and schools. Diagnostic challenges ensued when practitioners were unable to obtain a coherent developmental history. In these situations, school observations were described as an important source of information.schools can sometimes present things as more positive than they are or have decided in their heads actually this is all parenting . . . [. . .] . . . And so when we’re asking for information, you know, ‘how they are at school’, ‘oh we don’t have any problems this is all parenting this is all Mum bringing him in’. (Participant 02)Indeed, most participants emphasised the importance of school reports and school observations. Yet, there were some critical comments about these reports. As one interviewee put it:We have the time and the more in-depth tools to really look into kids who may have more subtle presentations or where there’s a question about comorbidities or alternative explanations. (Participant 09)There was some variation in assessment practices between national specialist services with some having additional supports such as classroom-based in the service and access different standardised instruments. Nevertheless, the critical difference between national specialist and local services seemed to be time and remit and resourcing to conduct certain assessments:If the ed psych wasn’t up for doing a formal cognitive test which is also fairly often the case. Mostly, in fact. Then we could do that ourselves. We don’t . . . It’s not a major part of our remit really diagnosing LD, but if we’re already assessing for something else and it’s really critical for us, we would do that. (Participant 17)Several participants emphasised the importance of cognitive assessments. Yet, the arrangements and resourcing issues meant that, in some settings, cognitive assessments were typically conducted by educational psychologists in schools. There were some critical comments about the support the team were receiving in this regard:We are a specialist second opinion team. I think what does slightly influence us, and we try not to, but it requires a bit more negotiation is our recommendations. So if you’ve got someone with co-occurrent anxiety a co-morbid anxiety disorder, and you wanted to arrange some cognitive behavioural therapy, then I guess whether that’s possible in local services needs a bit of negotiating. So yeah you have to think about what you’re recommending. (Participant 11)As discussed elsewhere, the availability of supports did not seem to factor into decision-making in terms of withholding a diagnosis. However, for some national specialist HCPs, resourcing issues in local services meant that recommendations occasionally had to be negotiated:Sometimes what happens is when you go to tertiary centres they don’t have the system knowledge, and parents don’t tell them whereas here when I open the electronic patient record I know what happened with the health visiting, school nursing, general practitioner, safeguarding team. When you go off somewhere else, you don’t have that. And we also got informal networks and arrangements where I can pick up the phone and talk to people without revealing names and things. (Participant 01)HCPs in local services described referring children to national specialist services when they were ‘stuck’, or there was a ‘subtle’ presentation, complicated by comorbidities or developmental history. Yet, some tensions were identified between the levels of care when there were diagnostic disagreements. Reflecting on this, one HCP in a local service stated,We try as much as possible to work with the local teams, so if I’m going to be doing a speech and language assessment, I will always contact the department . . . [. . .] . . . I feel sometimes just having a ten-minute chat with them just breaks down the barrier. (Participant 10)National specialist HCPs did not, in general, tend to speak of strategies to alleviate these tensions. Although one HCP did indicate that informal conversations with local teams can help bring the services together:approach to diagnosis and (2) elements of assessment. An array of attitudes was expressed regarding the nature of diagnosis, with some critical comments regarding the preponderance of medical discourses as the mode of describing the functional needs of children. Nevertheless, diagnostic decisions tended to centre on (a) whether a child’s behaviour was a natural fit with diagnostic criteria or (b) whether a diagnosis would benefit the child or family. Indeed, a pragmatic approach to diagnosis was a persistent thread throughout the interviews when discussing instances of revisiting a diagnosis or differentiating between autism and ADHD. Importantly, however, a pragmatic approach tended to be adopted in diagnostically uncertain cases, and all participants accentuated the importance of a robust assessment. Relatedly, all participants indicated that they used standardised assessments in the diagnostic workup. However, participants emphasised that these tools need to be considered in conjunction with other forms of information due to psychometric, clinician or child and family factors. Somewhat predictably, inconsistencies between stakeholders or discrepancies between the various forms of information were not uncommon and framed as problematic. Assessments of adjacent abilities or experiences seemed to figure in the diagnostic workup, although there was some variation regarding the nature of these assessments across the various teams and services. Nonetheless, cognitive assessments were discussed relatively often. In local teams, resourcing issues came into view regarding support for conducting cognitive assessments.This study sought to provide information about clinical perspectives on assessment practices for autism and ADHD in a sample of experienced HCPs in the United Kingdom. We identified two overarching themes (1) Elsewhere e.g. , it has Yet, it is a clinical reality that some ‘pragmatic’ adjustments might be required in diagnostically complicated cases to help ensure the child’s needs are met. Therefore, from a theoretical standpoint, it seems likely that over time, pragmatic applications of diagnosis will shape what is considered a ‘natural fit’. Indeed, the history of both autism and ADHD indicate that this is the case. Importantly, however, pragmatic adjustments are not confined to clinical discourses. A desire for statistical power, for instance, means that adjustments are routinely made in research contexts. For example, screening tools as often used as a proxy for diagnosis, and there is substantial methodological variation between epidemiological studies about what qualifies as a positive incidence of a diagnosis. These research practices, among others, also shape our ideas about diagnosis. Nevertheless, broadly speaking, we agree with others e.g.  who haveMaynard and Turowetz i.e. , 2019 trSeveral of the HCPs offered reflections on cases where they had revisited a diagnosis. Psychometric studies e.g.  overwhelAs discussed, HCPs in survey studies tend to indicate neutral response to questions regarding the superiority of clinical judgement over standardised assessment or vice versa . In thisSeveral studies  have shoFinally, the finding that some HCPs were not getting adequate support for cognitive assessments is concerning. This is within a context where 42% of parents of children with autism indicate that their child was refused an assessment of special educational needs when requested . In the One of the strengths of this study is that participants were recruited from a range of services, including national neurodevelopmental services. Furthermore, the flexible topic enabled us to capture a wide range of perspectives on novel and unanticipated topics . Still, the fact that eight participants worked in national specialist services meant that some potential topics (e.g. resourcing issues) were not as prominent in the data. Further only one parent provided feedback on the paper, which we regard as a material limitation. It is also worth noting that our research focused on autism and ADHD, and therefore, it is not clear whether the findings apply to other neurodevelopmental conditions. Finally, our sampling techniques  and the relatively high number of psychologists (n = 10) might mean that the perspectives discussed in this study might not represent other professions.This study has identified some of the contextual factors that shape assessment practices for autism and ADHD and, as such, adds to the literature on neurodevelopmental assessment. One of the main findings is that diagnosis is typically applied in two ways, which we call natural and pragmatic. Although often problematised, pragmatic adjustments are common in both clinical and research. However, we agree that structuring services based on individual need, rather than diagnosis, is a potentially sensible goal. Moreover, it would seem crucial that decisions about service configuration are made in conjunction with experts-by-experience to best understand how to meet their need and wishes. In addition, our results indicate that standardised assessments are important in neurodevelopmental assessment. However, an array of factors influences the utility of these tests, and different approaches are required to negotiate tensions between discrepant forms of information.Click here for additional data file.Supplemental material, sj-docx-1-aut-10.1177_13623613221121413 for ‘Instruments are good at eliciting information; scores are very dangerous’: The perspectives of clinical professionals regarding neurodevelopmental assessment by Barry Coughlan, Matt Woolgar, Emma JL Weisblatt and Robbie Duschinsky in Autism


Consolidated Criteria for Reporting Qualitative research (COREQ) were followed. Discussions were coded for major themes using an inductive approach. The following themes emerged: (1) Barriers due to NMOSD on employment including (i) visible and invisible symptoms, (ii) the burden of treatment, and (iii) time to diagnosis; (2) Mitigating factors when NMOSD affects employment; (3) Impact of COVID-19; (4) Impact on income; (5) Impact on new and future employment and higher education opportunities; and (6) Unmet needs that are pragmatically addressable, outside of major policy or scientific changes.Neuromyelitis optica spectrum disorder (NMOSD) is a rare and disabling neurological disorder, marked by recurrent attacks of the central nervous system. NMO has a high female predominance and disproportionately affects racial and ethnic groups who are under- and unemployed in the USA. Three focus groups, involving 20 working age adults with NMOSD in the USA, were convened  Neuromyelitis optica spectrum disorder (NMOSD) is a rare and disabling neurological disorder, marked by recurrent attacks of the central nervous system. NMO has a high female predominance >85%) and affects a high number of Black, Latinx, and Asian people –3. These% and affIn related diseases, such as multiple sclerosis (MS), reports of the socioeconomic impact on people living with the disease has led to a more complete understanding of the psychosocial toll, specific risks, unmet service needs, and remediable factors leading to opportunity loss –8. SimilGiven the limited understanding of NMOSD on unemployment in the USA, qualitative methods were chosen to provide formative understanding of the topic. Focus groups of people with NMOSD were convened to gather the range of issues facing employed and unemployed people with NMOSD.The Massachusetts General Hospital's Institutional Review Board reviewed the study protocol and deemed it exempt from further review. Participants provided their own individual verbal and written consent to participate. Inclusion criteria were a diagnosis of NMOSD by a neurologist  seropositive, or double seronegative) with confirmation in a medical record reviewed by a neurologist-investigator, age 18–70 years old at the time of enrollment, and residence in the USA. Exclusion criteria were an unverified diagnosis of NMOSD, residence outside of the USA, or NMOSD diagnosed < 1 month ago. Participants could speak English or have a translator available in their language of choice. A sample size of 20 participants was targeted.via neurologists in other U.S. centers. Participants were recruited to achieve diversity of race, gender, ethnicity, geographic location in the USA, and autoantibody status. Participants who provided proof of their diagnosis were selected until the targeted sample size of 20 people was reached. Six people aiming to enroll in the focus groups had fabricated documentation of NMOSD upon review and were excluded from participation.Participants were recruited through the NMO clinics at Massachusetts General Hospital and through the word of mouth, social media posting to a recruitment website from the Sumaira Foundation and Massachusetts General Hospital , and via Zoom™ within an 8-day timespan in December 2022. This timing reflects the gradual taper of COVID-19 cases in the USA, particularly COVID-19-related hospitalizations and deaths. It is a high-inflation, economic slowdown environment; employment remains strong for the general U.S. population. In December 2022, unemployment was low (3.7%) in the U.S. population  and was assisted by a clinical research coordinator, fluent in English and Spanish. The participants were aware of the topic of the discussion “employment and NMO” and before the discussion, asked to complete a structured ~75-question survey in English or Spanish on employment and NMOSD to aid survey development. The survey was pilot tested by telephone with NMOSD participants before enrollment in this study. All focus groups were held at 4-5:30 PM and with notice to allow working people to participate close to the end—or after—their regular employment hours. Each participant was paid 100 USD for the focus group discussion and 75 USD for the survey completion. We chose to pay participants to ensure employed participants were represented alongside those who were un- or under-employed, all without loss of possible income during participation.The goal of the focus group—to understand the impact of NMOSD on employment—was stated at the beginning of the open discussion.Audio transcripts were made using Microsoft Word™ and word frequencies were noted for possible NMO symptoms  and employment-related words . Both investigators wrote extended written notes during the discussions and coded key words post-focus groups. A thematic, inductive approach was used to organize the major issues that emerged. Prompt questions were used for the discussions, but no themes were pre-conceived. Post-focus groups, the following themes emerged: (1) Barriers due to NMOSD on employment including (i) symptoms, (ii) the burden of treatment, and (iii) time to diagnosis; (2) Mitigating factors when NMOSD affects employment; (3) Impact of COVID-19; (4) Impact on Income; (5) Impact on new and future employment and higher education opportunities; and (6) Unmet needs that are pragmatically addressable, outside of major policy or scientific changes.Reporting of the qualitative research followed the checklist for the Consolidated Criteria for Reporting Qualitative research (COREQ) . TranscrParticipants' demographic, clinical, and employment characteristics are provided in All participants reported difficulties from NMOSD on their employment. The age of onset of NMOSD was relevant: in cases of pediatric or early adulthood-onset NMOSD, employment opportunities were especially hindered or never possible. By contrast, NMOSD onset later in adulthood, after educational attainment and career advancement, was often met with accommodations. Several participants reported they were not currently employed and were on disability status, retired early, or working free-lance.Barriers to employment emerged as (i) physical/visible, (ii) physical/invisible, (iii) fatigue, (iv) mental health capacity, (v) cognitive, (vi) sense of negative perceptions of coworker and employers. Overall, spinal cord syndromes had a major impact on participants' employment and fatigue was the most commonly reported symptom impacting employment productivity.Visual symptoms impacted employment through visual loss , double vision, and visual fatigue with reading. Significant resiliency was noted in visual function compensation including one participant who worked in information technology for more than 25 years with visual function in one eye, using magnifying glasses, climbing ladders, and carrying heavy equipment. A different participant with unilateral visual loss reported that coworkers continually forgot she could not see them out of one eye. Double vision was prohibitive for driving to work in another case. Visual fatigue or eye strain was notably difficult for students who felt they could not compete with long reading assignments or tasks that required long hours of visual attention.Spinal cord symptoms predominated the discussions on barriers to employment in NMOSD. One participant reported that her “legs giving out and peeing myself” were major concerns for returning to the office. She could not wear a bra comfortably due to paresthesias and myelopathic pain, preventing a return to work. Frequent urination led to permanent disability in one participant who reported the urge to “urinate every 10 min.” Other participants reported the embarrassment of wearing adult diapers at work and the pain of sitting in a wheelchair all day. Spasms in the legs were a hindrance in some participants who found the episodes painful and difficult to predict and control. One participant reported needing to take a freight elevator into the office due to the lack of a passenger elevator. She expressed concern about coworkers watching her walk to her desk, and the resultant need to arrive early at the office to avoid being seen walking. Conversely, one participant reported that she could no longer go for lunch with her colleagues because the difficulty of getting there due to the inconvenience to go outside of the office with a physical disability, and over time, dwindling invitations by her coworkers to join in social activities at lunchtime.While some NMOSD symptoms were perceived to be obvious to coworkers and employers, such as ambulation difficulties, several symptoms, including pain, spasms, and cognitive symptoms were felt to be invisible and overlooked. These impairments could compound. A participant whose first NMOSD symptom was binocular visual loss was able to attend college and a work study program, but after college, she experienced myelitis. “I got paralyzed as a quadriplegic and I lost the sensation of touch. That's what made it super difficult... trying to find a job that can work with those multiple disabilities.”The need to “remember everything” and embarrassing levels of “forgetting” were reported by some people with NMOSD. One stated her desk was filled with sticky notes and notepads and was worried that the many reminders looked concerning to her colleagues. Several participants noted “brain fog” to a degree that was “unreal” and an important part of their inability to work.One participant reported “we can't depend on ourselves” and was concerned about liability on the job or responsibility for things going wrong if her body could not see or walk in the same way as before the diagnosis.burden of treatment in NMOSD was high in some cases. The accrual of visits was burdensome over time with several participants reporting the need to travel long distances to get NMO specialized care. The initial hospitalization upon first NMOSD attack for one patient was 37 days, leading to an immediate long-term work absence. Frequency of infusions was a burden in some participants, including the need for intravenous immunoglobulin every 6 weeks (for hypogammaglobulinemia on B-cell depleting therapy) or the need for an infused DMT every 2 weeks (eculizumab). Post-infusion side effects of Benadryl and steroids were also noted to be physically tiring in some participants, requiring time off from work. One participant reported complications of plasmapheresis, leading to hospitalization for venous thromboses in the intensive care unit. One participant reported needing to see “15 specialists for her care” which was a full-time engagement.The Steroids were very commonly reported to create side effects that were difficult to work with including jitteriness, anxiety, emotionality, irritability, speaking too quickly, inattention, and overeating. “I would say crazy things” and “get very angry” said one participant. Another participant who took steroids for 19 weeks said that steroids were “the worst part” of treatment when trying to work. A third participant stated, “steroids are the devil.” The “emotional toll” of steroids on people with NMOSD and on caretakers was noted in many cases, with some reporting that they left a “permanent scar” and “reduced (completed) workloads by half.”The needs to “plan everything,” “leave work early,” “switch to weekend appointments,” and to “travel 1.5 h to ERs where  know NMO” were noted. However, this shifting of appointments to weekends and afterhours “greatly diminished free and recharge time” after work. Treatments were especially burdensome in some jobs where limited and often advance scheduling of time off was the norm, such as for schoolteachers, technicians, and police officers. The benefits of physical therapy were noted, but required two to three visits per week, during work hours, often requiring 5 h per work week. Aqua therapy was felt to be helpful, but “time consuming.” People in jobs were sensitive to “taking more time off than allowed.” One participant reported she was in an NMOSD clinical trial for a DMT, requiring regular study visits in addition to her usual clinical care.long duration before the diagnosis of NMOSD was also problematic for some participants, who were initially misdiagnosed with MS, or whose symptoms were dismissed as “hysterical” or “vitamin deficiency,” and led to years of “back and forth with neurologists” before the NMOSD diagnosis was rendered. The interplay between being African American, female, and having NMOSD was also noted in some but not all cases. Six hospital stays were required for one participant before the diagnosis was made who stated, “I had to firmly advocate for myself to get the right treatment.” Several participants were initially diagnosed with MS and told their school or employers this diagnosis initially. One woman reported being diagnosed with MS for 8 years before her NMOSD diagnosis was made. A participant called this the “triple disadvantage” for employment, encompassing gender, race, and “navigating the medical system with a rare disease.” Several African American women perceived that their pain in particular was “dismissed” by physicians. One man with NMOSD who presented atypically stated: “I went through the hell of ‘I don't know if I've got NMO' for a long time.”The Coworkers' perceptions influenced several participants in their work environments. One participant stated the need to “over-explain, over-document, and over-compensate” for her disease. The number of times to mention or bring up the diagnosis to an employer was a source of stress at times. Although most employers knew of the diagnosis of NMOSD among the participants, some participants had not disclosed the diagnosis to their coworkers. Participants reported “doing things differently” and that one “can't work as hard as I used to,” leading to lower work performance.Major themes in work participation included (a) the unpredictability of the disease evolution, (b) the new excess burden of work given impairments from NMOSD, (c) employers' fear of employing someone with NMOSD, (d) driving to work difficulties, and (e) contemporaneous presence of other life factors, including parenthood and medical comorbidities.Given the rarity of the disease and the data on NMOSD outcomes online, namely that there is a high risk of mortality within 5 years , many paTwo participants reported losing a job opportunity due to NMOSD. One participant reported that the employer heard about the NMOSD diagnosis after the interview, and “the job offer disappeared.” Another reported a relapse on the day she was meant to start a new job and was told she “wasn't a good fit.”Driving was impacted in terms of sensory symptoms , double vision, myelopathic pain, and episodic leg spasms. Fatigue and hypersomnia were noted as dangerous to drive for some participants. Some participants reported being heckled for using disability parking spots by members of the general public since their disease was less visible to others.Several participants reported they were also actively parenting and found the combined responsibilities of work, parenting, and NMOSD high. Others reported comorbid illnesses alongside NMOSD including psychiatric diagnoses, unrelated orthopedic surgeries, or systemic lupus erythematosus. In some cases, a caretaker of a participant of NMOSD was also a caretaker of children.Several participants noted the value of flexible work schedules, working from home, and “understanding managers.” A common phrase was “fortunate to be able to work from home” and “stay at work” despite the NMOSD symptoms, particularly fatigue. Some noted that working from home can still be physically and mentally taxing, and either way, there is “learning a new normal” at work. Self-employment and free-lance work were associated with more control over managing schedules when NMOSD symptoms flared. Examples included taking naps when needed or taking full days off for symptoms or appointments. The understanding of managers and bosses as well as the “ethos of the office” were positive factors in several cases. Several participants reported that maintaining a job after an NMOSD diagnosis preserved a “sense of normalcy” as other aspects of their lives were drastically changed.Students in higher education programs found that their universities were overall very accommodating and willing to adjust their program enrollment duration and other provisions such as longer times to sit examinations.Achieving stabilization on a DMT for NMOSD was helpful for several participants over time, as was establishing a longitudinal relationship with an NMO specialist who could provide care. Some participants reported that living nearby an academic medical center with NMO expertise was an advantage. Others noted the value of telehealth to accommodate their schedules without travel.Many participants found meeting other people with NMOSD to be helpful, supportive, and “calmed fears.” Most participants reported knowing no one else with NMOSD personally, limiting their ability to predict their future experiences or have support from someone familiar with the disease.Alongside COVID-19's impact has been a general trend to allow many employees to work from home. As return to in-person work continues, several participants expressed uncertainty. One participant reported “getting COVID-19 three times last year” while immunosuppressed. For people diagnosed during the pandemic, returning to the office as someone immunosuppressed was associated with significantly increased stress. Some reported comfort with stricter workplace environments for mandatory COVID-19 booster vaccines, required testing for COVID-19 to return to work, and related measures. The return to work was reported as “nerve wracking” given the risks of COVID-19 but also the need to “not make waves during a recession” was reported. One participant stated she could not take a job working with children due to her high concern of getting COVID-19 and other respiratory infections from children at the workplace. Masks were felt to be particularly helpful for the side effects of steroids, including hiding moon facies and obscuring lip biting and other signs of irritability while on steroids.Several NMOSD participants reported federal disability assistance. To gain additional income, the need for hourly jobs or hour-by-hour paid tasks such as online surveys, social media related opportunities, freelance writing, and short, work from home jobs was emphasized. This was due to the uncertainty of how NMOSD symptoms would affect work performance the next day. “It is difficult to get a real job,” stated one respondent. The fear of being fired from the job was reported in some cases, especially since some participants needed the money, need the health insurance, and “were barely making ends meet.” One reported there is a risk her partner will lose his job due to the recessionary environment and she has no option to leave her position now.Three themes emerged when discussing future opportunities: (1) loss of ambition and reduced prioritization of work with a chronic illness, (2) worry about a future employer being less accommodating of one's needs with NMOSD than the present employer, and (3) need for less physical work, necessitating career changes. Most participants were not presently looking for a job, either confirming that they would be on disability status or reasonably satisfied with their current positions. Several reported the risks of changing jobs since health insurance is tied to their current job. Since their health insurance was working for them for the DMT and visit costs' coverage, they felt “stuck” in their jobs and unable to seek out new work opportunities. There was self-doubt on the ability of participants to succeed in a new job, especially if the current job was comfortable or accommodating to their needs. Among those who switched jobs after an NMO diagnosis, there were mixed results, with some succeeding in the same position and finding it more accommodating, and one returning to her prior employer.For higher education, goals tended to be dropped or changed. Even though universities were accommodating, participants expressed self-doubt about their ability to complete programs due to their NMOSD symptoms. One participant shared, “I don't feel as ambitious as I was.” Another stated that she accepted she would be in her doctoral program for more years than is usual for her program. Another stated she was “on my way to law school” but visual symptoms made her computing and reading more difficult. She reported she was “not mentally able to do it.” The “workload and stress” were barriers when she needed to “focus on health.”Several participants reported a need for better community and employer understanding of NMOSD, particularly as distinct from MS. The reference to information found on Google and other online search engines, finding out-of-date information about the near-term mortality of NMOSD, was especially burdensome. Some participants told their employer that they have a condition that is similar to MS, but expressed regret given the stereotypes some people have about aggressive cases of MS, the cognitive component of MS, and the difference in clinical features and some treatments. A more up-to-date, modern, and public information source of information that is useful for employers could be made.Participants often reported the value of work from home accommodations, for their mobility, toileting, relief of pain and fatigue, driving concerns, and vulnerable immunosuppressed state. There is uncertainty on employer's continuing accommodations for some jobs as COVID-19 changes and “return to the office” mandates occur. Participants who already worked from home and were able to do so throughout the pandemic were more likely to feel optimistic about retention in their current positions. Education on immunosuppression and the risks of infection in group settings was another point of interest for employees who retained in-person employment.Flexibility of health services was a mitigating factor for several participants, including having MRIs, infusions, or visits, especially before work or on weekends. Telehealth was an advantage. This enabled the concealment of their diagnosis better, avoiding more time off from work, obviating more conversations about their illness, and less emphasis on their inability to be present during work hours.Identifying opportunities in the workforce for people with college degrees who have difficulty with sensation was identified as an unmet need, including advertisements or curating of job opportunities that are open to people who need assistive technologies to write or type.There is an opportunity for pharmaceutical companies to ensure bridging of the high-cost DMTs as people with NMOSD change jobs and possibly health insurances. Since insurance for health is combined with employment in the USA, security of a DMT continuing during job transitions is a challenge for higher-frequency and high-cost DMTs especially.Improving awareness of NMOSD's deficits, at times distinct from a more general concept of physical disability, would help people with NMOSD. Participants felt isolated from the “general disabled community's needs.” Advocacy and support for people within the NMO community was felt to be important, since the symptomatic therapies, unpredictability of future attacks, and immunosuppression posed additional challenges. Meanwhile, familiar concerns, such as a lack of passenger elevator access, poorly accessible lunch facilities, and transportation to work remained present on a case-by-case basis.Our study reflects a particular timepoint in the U.S. economy and COVID-19 pandemic and synthesizes the views of 20 people living with NMOSD in the USA. NMOSD is a rare disease affecting an estimated 1 per 1,000,000 people in the USA  with thrOur study was limited by several factors. The coding of the text was done by the investigators themselves and prone to any subconscious biases that may occur. An alternative approach is to use computerized natural language processing as an objective method for determining topical themes as a fully unbiased approach. However, focus group conduct, analysis, and interpretation by a neuroimmunology-trained neurologist may have also facilitated the discussion given the prior awareness of treatments, symptoms, and the U.S. medical system. We did not return transcripts for additional review to participants to minimize participant burden. Our focus groups were conducted online, leading to our need to carefully screen and exclude participants who did not meet stringent criteria of evidence of NMOSD diagnosis. It is possible the dynamic of the conversation and discussion would have changed in person. By contrast, given the risks of group settings for immunosuppressed people during the winter for respiratory infections, the same participants would not have been able to join, especially across the country. Another note is our combination of aquaporin-4 seropositive, MOG seropositive, and double seronegative NMOSD patients. MOG antibody disease was included given the lack of information on the psychosocial impact of MOG antibody disease; however, we note that MOG antibody disease is increasingly recognized as a separate entity from aquaporin-4 antibody seropositive and double seronegative disease. Since NMOSD disease trajectories may reveal differences over the life course depending on presenting autoantibody status, the extrapolation of one participant's experiences to people across disease subgroups—or even within subgroups—should not be presupposed.The research reported here is meant to be formative. Future studies of a more quantitative nature on the impact of NMOSD on employment remain highly valuable and could benefit from our draft survey instrument, refined by these group discussions, that is meant to address these themes. These focus group comments may also inspire community programs, non-governmental organization (NGO)-based initiatives, and future governmental policies related to work for people with neurological disabilities. This synthesis presents both the challenges and mitigating factors to employment, as told by people with NMOSD. The NMOSD patient's voice is generally lacking in the reported medical literature but provides insights beyond the clinic and thus instructs what clinicians and other stakeholders could do to address real-world issues. While solutions are proposed and suggested for employment in NMOSD, it is likely many more will become available, through new technologies, multidisciplinary disease care, vocational rehabilitation, screening instruments for job loss risk, health systems' sensitivity to health care interference on economic productivity, and improved awareness and education in the community on NMOSD.The original contributions presented in the study are included in the article/The studies involving human participants were reviewed and approved by Mass General Brigham Institutional Review Board. The patients/participants provided their written informed consent to participate in this study.FM: drafting, editing, study concept, study supervision, and obtaining funding. CT: data collection, data interpretation, and manuscript editing. Both authors contributed to the article and approved the submitted version.


Results: A total of 86.9% of the participants stated that sharing children’s photos and videos on social media platforms by parents, relatives and caregivers can be evaluated as child neglect and abuse. The variables of “gender” and “the impact of sharing on children” are factors that are associated with determining whether the sharenting syndrome is classified as abuse or not. Gender is a negative predictor of the classification of sharenting on social media as a type of child abuse and neglect. Conclusions: Since the use of social media by people is increasing, there should be measures to protect children from sharenting syndrome.Background: The use of social media is on the rise, and posts about anything can be shared these days, whether it be clothes, jewelry, shoes, books, or food and beverages. Some parents even use their children as objects of sharing, and post about their children continuously. Parents who use social media share important moments before and after their children are born on their social network sites accounts. Sharenting refers to the practice of parents, caregivers or relatives sharing information about their children (underage) online, typically on some online platforms. This can include photos, videos, personal stories, and other updates about the child’s life. The study aimed to examine the phenomenon of sharenting syndrome in terms of its potential to cause child abuse and neglect. In addition, the aim of this study is to explore the factors associated with and predicting sharenting syndrome by evaluating it through the lens of child abuse and neglect. Methods: This study was designed with a survey model among quantitative research methods. Data were collected through social network sites with snowball sampling method. The sample consisted of people aged 18 years and over from Turkey ( According to the United Nations Convention on the Rights of the Child, any individual below 18 years of age is considered a child. Unlike in the past, when children were treated as miniature adults, they are now viewed as essential contributors to the future of society. Variables such as the social environment, socio-economic status, care arrangements, access to education and healthcare services, and child and parental health have direct and indirect impacts on children’s lives. Child maltreatment is another factor that can have long-term effects on a child’s life. Child maltreatment refers to the abuse and neglect experienced by children under 18 years of age [Child abuse can take four main forms: sexual, emotional, physical, and economic. Sexual abuse is defined as ‘the abuse of a child or adolescent who has not yet achieved sexual maturity by an adult who uses force, threats or deception to satisfy their sexual desires or needs’ ; emotionThe birth of a baby in a family usually brings great joy, and parents may wish to announce the good news and share their happiness in various ways. However, the methods of making such announcements can vary significantly from family to family and culture to culture. Culture can be as influential in a child’s life as their family. In addition to the traditional cultural practices, the mobile age has given rise to a new human culture that has transformed the lifestyles and daily activities of most people . With thSharenting is defined as parents sharing content about their children on social media  and on tSharenting syndrome is common among parents . A measuSharenting is the practice of using social media to share news and images of children. It carries a negative connotation of parents spending too much time showing the world the happy and fulfilled life of their children instead of really parenting . In thisWhen engaging in sharenting behavior, parents may unintentionally expose their children to risks . In a stThe potential dangers of sharenting syndrome include the theft of children’s identity information and use of their images on child porn websites . ParentsParenthood roles are not well defined in the contemporary world, and the variability and heterogeneity of the parent–child relationship can create uncertainties . ParentsRepresentations of children on social networking sites (SNSs) differ between males and females. Male social media celebrities tend to share posts related to “leisure” and “food and drinks”, while female social media celebrities tend to share posts related to “clothing and shoes” and “childcare and health” . The pheThe behaviors of sharing and disclosing intimate information about children by their parents on social media platforms is rapidly growing and has become a topic of research for scholars worldwide. Children who become well known on social media may be vulnerable to neglect and abuse due to their developmental characteristics. Child neglect and abuse are not spontaneous situations but are instead caused by people. Similarly, in sharenting syndrome, the child is at risk due to the sharing of the parents, and in some cases may be exposed to neglect and abuse. While sharenting syndrome may not always result in visible harm to the child involved , it can Emotional neglect, typically characterized by a lack of attention paid to a child’s emotional well-being, can be particularly challenging to identify and assess, particularly when parents or caregivers struggle with addiction issues . SharentWhile traditional forms of child abuse inflict direct harm on the child, sharenting can damage the child’s image and pose potential risks to their well-being, both in the present and future. The act of sharenting may result in emotional neglect and abuse, as the caregiver may prioritize the desire to create engaging content for their followers over the child’s needs. In some cases, the caregiver may even coerce the child into repeating certain behaviors or phrases in front of the camera, exploiting the child for entertainment value. Therefore, sharenting can be considered a form of neglect and abuse as it endangers the child during the recording and leaves the child vulnerable to possible harm that may arise from the shared content.The evaluation of sharenting syndrome as child neglect and abuse is associated with specific demographic characteristics, including age, gender, educational level, and socioeconomic status.Parents’ social media use characteristics are associated with the assessment of sharenting syndrome as child neglect and abuse.The evaluation of sharenting syndrome as child neglect and abuse is associated with various forms of child maltreatment, including emotional, physical, and economic neglect and abuse.Some demographic characteristics can predict whether sharenting syndrome can be considered child neglect and abuse.Accordingly, the present study focuses on sharenting syndrome. Various studies have been conducted regarding sharenting ,42,43,44This study has been designed with survey model among quantitative research methods. Survey model aims to describe a condition as it is . Literatn = 63,542,181) is 85% in 2022. In other words, the number of individuals using the internet is 54,010,854. The social media applications that these individuals use the most are WhatsApp, YouTube, and Instagram. The average social media usage is 68.9%  [The total population of Turkey is 84,680,273. Internet usage rate of adults  .n = (N × t2 × p × q)/(d2 × (N − 1) + t2 × p × q) formula was used. In the formula, t: 1.96, p: 0.50, q: 0.50, d: 0.05 (95% reliability) values were used. Accordingly, the sample size was determined as at least 385 people.For calculation of the number of sampled individuals, In order to reach this sample number, criterion sampling method, one of the non-probability sampling methods, was determined. The criterion was being over 18 years of age and using social media. Individuals for the sample were reached by snowball sampling method.The survey questions prepared in line with the literature review and expert opinions were entered into Google forms via Google. For sample validity, the research link was delivered to a total of 7 participants, 4 women and 3 men, and a pilot study of the research was conducted. No changes were made to the questions after the pilot study.Consent on study was obtained from the participants to participate. The data were collected between July 2022 and September 2022. Data were collected through social network sites with snowball sampling method. Participants were included in the study via word of mouth and social network sites. Inclusion criteria required all participants be (a) aged 18 or over and (b) using social networks sites.The research link was shared on social media accounts , and data collection started. During the data collection process, those who filled out the questionnaire were asked to share the survey link with people over the age of 18 and using social media. The data collection process was finalized when the sample size reached a sufficient number. For the accuracy of the sampling frame, it was checked whether the participants in the sample met the criteria determined in the research. Since all participants met the specified criteria, no data were excluded from the sample.p ≤ 0.05). Multivariate analysis of categorical variables was binary logistic regression analysis. Variables effective in sharenting syndrome were analyzed by binary logistic regression analysis.After the prepared survey questions were applied to participants, the obtained data were gathered. The percentages and frequencies of the data gathered from the participants were calculated and reported. In addition, the other opinions stated by the participants were shown with direct quotations. The relation of the variables with sharenting was also evaluated using chi-square test of independence at 95% confidence (The present study was approved by the Ethics Committee of the Çankırı Karatekin University (EC Number: 26/28-06-2022).n = 427; 57.6% female). Participants were, on average, 36.2 years old .The sample consisted of people aged 18 years and over from Turkey  do not share the photographs of their children on social media platforms, and the frequency of sharing photographs and videos by those who share is a few days a year (21.1%).Participants have stated that parents start sharing information about their children on social media platforms when in utero (45.7%); they share a few days a week (39.8%); they share mostly photos on social media platforms (85%); the content of the share is about special days such as birth and birthday (45.9%); and they share for recognition and being known (32.8%). According to the participants, among all other reasons for parents’ sharing about their children on social media platforms, there are statements “addiction”, “unmannerliness”, “ignorance”, “flaunting”, “effort to be popular”, “mental problems”, “boasting of children”, “showing the good sides of children”, “sharing what they believe to be true”, “because they see their children as their most important part”, “because they are happy and they want to share their happiness” .Participants stated that as the result of parents’ sharing on social media platforms about their children, children’s privacy is affected at most (66.3%); it can cause neglect and abuse and cause the visuals of the children to be used on inappropriate sites. The other opinions of participants are: “the sharing group is our close circle, so I don’t think it will cause a problem”, “I think everything will have an effect”, “I think it will have an effect in psychological, social, emotional and private terms”, “Nobody shares bad photos of their own child, the compliments to the child may encourage the child unnecessarily in many subjects”, “I think it changes according to the age of the child”, “Since I share in secure media, I haven’t thought about this”, “It can have an effect in any way”, “The wish to be apparent on social media and the feeling of its necessity develops, causing the possibility of being an addicted individual to increase”, “I don’t think we can talk about a certain situation of affecting or being affected, but if a situation of being affected is concerned, it will cause a negative consequence rather than positive, I think. And this can be in the form of a child’s being too mingled with technology in terms of development and in the form of adopting an existence with lack of productivity and meaning”, “Because the sharing is open to everyone, to public, the content can be used in a way to cause positive or negative results for very different purposes, it has an effects in terms of both social engagement and privacy” .Participants stated that parents most use social media platforms for sharing (52.5%). Other opinions of the participants are “taking a look at soap bubble information for letting themselves go”, “getting away from daily troubles and stress with funny content. For sure, for limited periods”, “for becoming a phenomenon, getting ads, and earning money”, “receiving news and getting information”, “becoming popular”, “it is a kind of a situation that can change for everyone”, “changes according to the person”, “all is suitable”, “spend time”, “addiction”. Participants expressed that mothers (67.2%) use social media platforms more, and parents should obtain permission from their children while sharing about them (92%) .In response to the question “Do you think excessive sharing of children’s photos and videos on social media platforms can be evaluated as child neglect and abuse?”, 86.9% of the participants replied “yes” .All participants were over 18 years of age and used social media. Among the participants who considered sharenting syndrome as child neglect and abuse, 52% were female, 30.9% were between the ages of 36 and 45, 56.2% were married, and 54.3% had children .2 = 6.044, p > 0.05), marital status , having children , education level , income level , number of children , number of social media accounts , status of sharing their children on SNSs , frequency of sharing their children on SNSs , time of starting to share photos and videos of their child on SNSs , content shared on SNSs , reason for sharing , the purpose of using SNSs , the parent who uses SNSs more , the status of obtaining permission from the child while sharing on SNSs . Based on these findings, Hypotheses 1 and 3 were confirmed.The variables “gender” and “the ways in which sharenting affects children the most” are factors associated with sharenting syndrome . The varSharenting syndrome has been associated with some demographic variables in studies ,48. To aWhether sharenting syndrome is considered as abuse and neglect was examined as the dependent variable in a binary logistic regression analysis. The analysis’s significant variables served as the independent variables. The only variable that is effective in evaluating sharenting syndrome as abuse and neglect according to binary logistic regression analysis is gender . Based oAccording to this study, approximately one third (32.8%) of participants who have children do not share their children’s photographs on social media platforms. Among those who do share, the frequency of sharing is infrequent, with 21.1% posting only a few times a year. Another study conducted with mothers in Germany determined that 60% of them did not share pictures of their children on social media, while 26% reported sharing such posts less than once a month . In contThe participants of this study reported that parents begin sharing about their children on social media platforms when they are still in utero (45.7%), and they share a few times a week (39.8%). Additionally, most of the content shared is photographs (85%). These findings are consistent with those of the previous literature. For instance, a study conducted in the United Kingdom with 1002 parents determined that 9% of parents shared ultrasound pictures of their unborn babies, 21% set up social media accounts for their children, and 13% took pictures of their children to gain more followers . AccordiAs parents share images of their children on SNSs, their children begin to develop a digital footprint long before they start walking, and these footprints can follow them into adulthood . ParentsIn this study, participants expressed that parents’ sharing about their children on social media platforms could have adverse effects, with 66.3% indicating that it could compromise their children’s privacy. Furthermore, it could result in neglect and abuse, and it could lead to children’s images being used on inappropriate sites. These findings are consistent with those of the existing literature.Parents frequently share details of their children’s daily lives on social media platforms, often without considering the potential impact on their privacy . SharentAccording to the findings of this study, participants reported that mothers (67.2%) use social media platforms more frequently for sharenting purposes. This finding is consistent with that of a previous study that examined Facebook use among new parents and determined that mothers made more use of the platform during the transition to parenthood than fathers . In someThe finding of this study, which suggests that parents should obtain permission from their children before sharing information about them on social media platforms, is in line with the studies in the field. Parents often use social media to share news about their family  and may In a study involving adolescents, it was determined that the respondents generally approved of their parents’ sharenting behaviors, indicating a high level of trust in their parents. However, respondents also reported that discrepancies between their parents’ online image and their own self-image could lead to uncomfortable situations. They stressed the importance of parents obtaining their child’s consent before sharing information about them on social media . Given tAll children are vulnerable and open to neglect and abuse. For this reason, the best interests of children should be taken into consideration in every decision and every action taken in relation to children. While children in the 0–6 age group are more dependent on their families, children who have reached the age of puberty may want to decide freely on their own. The age at which children make decisions varies according to the individual. Generally, children over the age of 12 can make decisions. This age may be as low as 7–8 years in some socially developed children. On the other hand, social approach and social environment are also determinative in the formation of ethical rules ,56,57,58In this study, when asked if excessive sharing of children’s photos and videos on social media platforms could be considered child neglect and abuse, 86.9% of the participants answered affirmatively. The sharing of images of children on social media has also been shown to be a major contributor to images shared on pedophile websites, with nearly half of all such images being obtained from SNSs . In someIn Turkey, a father filed for divorce on the grounds that his spouse exposed their children to abuse by sharing their videos and pictures on social media and having them appear on television shows to become celebrities. The court subsequently issued a ruling prohibiting the mother from sharing children’s videos or pictures on social media . This caIndividual children in different countries may experience varying levels of sharenting syndrome, and studies conducted in different countries have reported different results. In one study, parents were discovered to take precautionary measures to respect their children’s privacy after recognizing the risks they face. To avoid harming their children, these parents began engaging in practices such as covering or blurring their faces in pictures and withholding sensitive information, among others . During In December 2022, the National Centre for Missing and Exploited Children launched the “Take It Down” platform, which is now available worldwide. This free service is designed to help technology companies remove images and videos depicting children under the age of 18 in nude, partially nude, or sexually explicit situations . The objn = 367, aged between 18 and 61), no socio-demographic factors were defined as predictors of sharenting [As a result of a study examining socio-demographic factors that have an impact on sharenting, self-control and internet addiction (arenting . Howeverarenting . In thisIn this study, gender and ways in which children are most affected by sharenting are variables related to whether sharenting syndrome is considered as neglect and abuse. The variables that were not associated with sharing syndrome were age, marital status, having children, education level, income level, number of children, number of social media accounts, status of sharing their children on SNSs, frequency of sharing their children on SNSs, time of starting to share photos and videos of their child on SNSs, content shared on SNSs, reason for sharing, the purpose of using SNSs, the parent who uses SNSs more, the status of obtaining permission from the child while sharing on SNSs.In one study, psychiatric symptoms of parents and children were determined to be associated with some of the motivations behind sharenting . AnotherWhile media sharing by parents is often labeled as abusive, it is important to consider the full spectrum of parental motivations and actions. The widespread practice of parents sharing photographs of their children online  should nLimitations exist in the current study that must be acknowledged. While the findings may be applicable to cultures such as Turkish, generalization to other cultural contexts should be approached with caution. Sharenting syndrome is a relatively new issue, and the available literature on the topic is not yet comprehensive, particularly in regard to large sample sizes. Further research is needed, including inter-regional comparative studies involving large samples, to improve our understanding of sharenting syndrome.Children born in the 21st century have been raised in an environment where social media has become a routine part of their families’ lives. While social media can have both positive and negative effects, access to and harm from the digital world is not evenly distributed among children. One potential harm is child neglect and abuse, which does not occur in isolation. Children are often neglected or abused by others, including their parents, and the same holds true for sharenting syndrome, where parents’ online posts put their children at risk of abuse and neglect.According to the results of this study, 86.9% of participants believed that sharing photos and videos of children on social media platforms could be considered a form of child neglect and abuse. This article aims to raise awareness among readers, parents, and caregivers that sharenting syndrome can constitute a type of abuse and neglect, and to encourage greater caution in posting about children online.It is important to recognize that sharenting syndrome can have negative consequences for children’s privacy, autonomy and emotional well-being. Parents who share may unwittingly expose their children to risks such as online harassment, identity theft and cyberbullying. Furthermore, pressure to perform for social media can put children’s emotional and mental health at risk. Sharenting syndrome requires a different intervention than abuse and neglect. Awareness raising, counselling and trainings on sharenting syndrome can protect children. While the child welfare system is already overwhelmed with cases of abuse and neglect, child welfare professionals can play an important role in educating parents about the potential risks of sharing. By encouraging parents to prioritise their children’s best interests when sharing information online and by providing resources and support to help families balance their online and offline lives, child welfare professionals can reduce the potential harm of sharing. It is important to note that sharing should not automatically be equated with child abuse or neglect. Instead, child welfare professionals should work with families to ensure that their online activities do not harm their child’s well-being and privacy. This can be achieved through education, counselling, and support rather than punitive measures that can further burden an already overwhelmed child welfare system.Official agencies and other organizations also have responsibilities—in addition to parents—of protection of vulnerable groups in society, including children. There is a lack of laws aimed at protecting children from sharenting syndrome, despite the increased use of social media by parents . Therefo