Encephalitis, characterised as inflammation of the brain tissue, is an important cause of acquired brain injury in children. Objective clinical outcomes vary significantly between affected patients, however they do not always correlate with quality of life as reported by parents. The aim of this study was to explore how parents experience and interpret outcomes in relation to their child who has been affected by encephalitis.Data were derived from in-depth, semi-structured interviews, with 15 parents of 12 children and young people affected by encephalitis. Paediatric cases were identified from the retrospective arm of the research programme ‘ENCEPH-UK-Understanding and Improving the Outcome of Encephalitis’, and from the prospective UK childhood meningitis and encephalitis cohort study . Data were analysed thematically.Parents’ perspectives on important outcomes for their child and family changed during the different stages of the encephalitis illness trajectory: from acute illness, recovery and rehabilitation, then reintegration into everyday life. Parents’ understanding of their children’s overall outcome was informed by their own experiences, involving comparisons with other children and reflections on their child’s problems before, during and after the acute illness.Outcomes in paediatric encephalitis need to be understood in terms of the context of the patient and family experience as well as the timeframe of recovery. The research highlights the need to include more patient, parent and/or carer reported outcome measures during patient assessment, and that assessment should be repeated during recovery as family concerns change. In the longer term, these parameters could be included in clinical and rehabilitation practice to further support child recovery. Encephalitis is a serious neurological condition, which can result in death or permanent disability . The incAlthough mortality from paediatric encephalitis has decreased over past decades to <4% in high resource settings, recovery is highly variable , 7. FollPorter  stated tIn some encephalitis trials, validated questionnaire-based tools, such as the Liverpool Outcome Score (LOS)  and the This paper reports on qualitative interview data from the Core Outcomes Study. To achieve the study aim, a qualitative methodology, involving in-depth semi-structured interviews was chosen. The use of qualitative methodology within research into health experiences enables detailed understanding of what is important to the participant, including the meanings they attach to health and illness . Qualitawww.encephuk.org. This study was granted ethical approval by the National Research Ethics Service (NRES), East Midlands Committee (11/EM/0442), protocol number UOL000755.The Core Outcomes Study was a sub- study within the UK Childhood Meningitis and Encephalitis cohort study (UK-ChiMES) and ENCEPH-UK, a National Institute for Health Research (NIHR) programme grant for applied research on ‘Understanding and Improving the Outcome of Encephalitis’. Further details are given below and full information can be accessed from the ENCEPH-UK website Participants in this study were parents of children and young people with encephalitis who were identified and recruited from two inter-related cohorts; Firstly, from the retrospective ENCEPH-UK cohort, in which cases of proven encephalitis at any time between 2005 and 2012 had been retrospectively identified and recruited. Secondly, from UK-ChiMES , which recruited suspected encephalitis and meningitis cases between December 2012 and March 2016, from 31 hospital sites across the UK. Case definitions for encephalitis were the same across both cohorts . For thiCases of encephalitis were purposively sampled from the retrospective and prospective cohorts to ensure a diverse and representative sample in terms of the following characteristics: a) spread of ages at onset of acute encephalitis ; b) varying encephalitis aetiologies; and c) varying duration of time since onset of acute encephalitis . Within this study, 11 interviews were conducted with 14 participants. One further parent was interviewed for the End User Experience study , anotherThe Encephalitis Society, and was tested in a pilot interview.Potential participants were initially contacted by phone or email, and written information was sent out to those who were interested in participating. Data was collected by means of semi-structured interviews, between December 2013 and February 2014. Semi-structured interviews were chosen, as they enable in-depth exploration of specific topics important to the research question, while also ensuring flexibility to allow for discussion of unanticipated issues initiated by participants . A topicAll interviews were conducted in the participants homes, at their request. If both parents were interested in participating, they were given the option to have joint or individual interviews- all preferred to be interviewed together. No one other than the interviewer and the participant/s were present during the interview. The interviewer was JL, a female medical doctor, who had received training in qualitative methodology. To maintain the emphasis on investigating parents’ perspectives on outcomes and to avoid undue focus on medical aspects of the cases, JL introduced herself as ‘a researcher from the University of Liverpool’. Her medical status was openly disclosed if this came up in part of conversation at the end of the interview. All participants provided written, informed consent at the time of the interview. The flexible style of the interviews allowed for participants to decide how much information they wanted to divulge about sensitive topics. Interviews lasted between 40 minutes and two hours fifteen minutes. The data was limited to a sample size of 12 interviews due to the in-depth nature of parents’ narratives, which is in keeping with the fact that qualitative research aims for depth rather than breadth of data.The interviews were audio recorded and transcribed verbatim by JL and an experienced typist, who had signed a confidentiality declaration. Identifiable details, including all names and locations, were anonymised during transcription. Participants were given the option to have a copy of their anonymised transcript returned to them for checking.Transcripts were transferred into NVivo 10, a software programme for organising and analysing qualitative data. Thematic analysis was used to identify and analyse patterns across accounts, in relation to parents’ understanding and experience of their child’s outcomes. Thematic analysis can help generate unexpected insights from the data and allows the researcher to gain an understanding of commonalities as well as differences within the data set . During The transcripts were subject to initial coding, by one researcher (JL), which involved creating codes in the form of key descriptive phrases for patterns within the data. These codes were then used to produce a coding framework in which codes were grouped together under initial themed titles. The final themes were developed by an iterative process of moving back and forth between the data and the codes and developing overarching concepts and explanations for patterns and accounts within the data . Themes In the results, below, data is presented in the form of three cases. The use of cases to present data on encephalitis patients has been successfully used in other publications , 26, 27.The 15 participants  were parents of 12 children and young people (cases), who had been affected by encephalitis. Encephalitis aetiologies included autoimmune encephalitis (n = 4), viral encephalitis (n = 3), clinical encephalitis, unknown aetiology (n = 2), bacterial encephalitis (n = 1), acute necrotising encephalitis of childhood (n = 1), and ADEM (n = 1). Three of the cases had made an apparent full recovery from their encephalitic illness as reported by their parents. The remainder had a range of ongoing difficulties. Demographic characteristics of the cases and their parents, and a summary of reported problems from the parent’s perspective, are shown in The three cases we present below include children of different gender, ages and encephalitis aetiologies. We also wanted to ensure diversity with regard to type and severity of problems experienced post-encephalitis: case 1 has severe physical impairments; case 2 has made an almost full physical recovery but has ongoing cognitive problems that impact on his daily functioning; case 3 has a few minor resulting problems, however in the parents own words she felt that the encephalitis now had ‘no impact’ on her daughter. Case 3 was therefore selected to represent those children who had made a good/full recovery following encephalitis. As well as representing a range of characteristics, these particular cases were selected as, when taken together, their narratives depict, most typically, the accounts of all the participants in this study and serve to evidence the themes identified.Hannah was four years old when she developed encephalitis, associated with a parainfluenza infection. Her story is told by her mother, Cynthia, who was interviewed five and a half years after Hannah’s acute illness, when Hannah was living with her mother, father and younger brother. Although the encephalitis did not affect Hannah’s learning ability or personality, she is a full-time wheelchair user, has reduced upper limb strength and is incontinent.Cynthia described how she initially took Hannah to hospital after she became concerned that her ‘arms and legs were cold’ and she was ‘throwing herself around’. At her local hospital, Hannah was intubated to go for a computer tomography (CT) scan and was subsequently transferred to an intensive care unit (ICU) at another hospital. When Cynthia discussed her memories of Hannah’s time in ICU she recalled: ‘all these lines going into her body’ and the ‘machines around her’. At this time, Cynthia was concerned that Hannah’s kidneys were not functioning properly, and she had an overwhelming fear that she ‘would lose’ her daughter. She was in disbelief at the situation, since the illness had come entirely ‘out of the blue’: Hannah had been in good health a few days earlier.After several weeks, Hannah’s condition improved and she was moved to the high dependency unit (HDU). Cynthia recalled a moment, on HDU, when Hannah moved her head and described her hope at seeing this return of the most basic function in her daughter: ‘she wasn’t moving any other part of the body, but [at least] she was moving’. Cynthia explained how she then started questioning the extent to which Hannah would recover from encephalitis. Her main concern at the time was whether her daughter would be able to speak and eat again. During her time on HDU, Cynthia remembered a period where Hannah became ‘really upset’ and attributes this to her being ‘aware but not understanding’ what was happening to her. After 2 months, Hannah was transferred to an inpatient rehabilitation unit in her local hospital. Cynthia recalls that her priorities at this time were for Hannah to improve her clarity of speech, sitting balance and strength and to get her back home.After discharge Hannah had a slow transition back to mainstream school and took a long time to settle into the classroom. Cynthia reflected how, although things have changed over time, there is ‘always a different concern’ to be dealing with. For example, she discussed Hannah’s ongoing problems in terms of the impact on daily life: her weak hand grip means she has difficulty with handwriting and manipulating small objects, wearing incontinence pads results in Hannah often missing playtime at school because she is being changed by her teachers. Although Cynthia reported that having an electric wheelchair has increased Hannah’s independence, she recalled scenarios where Hannah had difficulty accessing buildings or activities at school and in the community, including having swimming lessons in a different pool to her friends.Cynthia explained how Hannah’s illness has had a huge impact on family life and she has given up work in order to care for her daughter. She also described the difficulties of trying to balance attention between Hannah and her younger brother and expressed concern that there are some things he misses out on. Regarding the future, Cynthia reported that she was concerned about finding the right secondary school for Hannah and hoped she would be accepted by her peers and be content and comfortable in life. Cynthia summarised their situation by saying that: ‘we have to be grateful…for her being here, being able to talk, able to eat, just little things, able to breathe on her own and just being happy’.Freya was two years old when she was diagnosed with encephalitis caused by anti-N-Methyl-D-aspartate (NMDA) receptor antibodies. Her mother, Sarah told her story three years later, when Freya had made an almost complete recovery after a long initial hospitalisation. At this time, Freya was living with her parents and teenage sister.The first sign that Freya was suffering from encephalitis was when she had a seizure and was airlifted to hospital. Sarah recounted how, the following day, Freya started to ‘dribble’ and ‘her leg stopped working’. From then on, according to Sarah, Freya changed ‘from being a normal two-and-a-half-year-old, to not being able to speak, walk or even sit up’. Sarah reported that it was about four weeks before the hospital found out the cause of Freya’s encephalitis. During this time, Freya’s body was affected by ‘spasms’, causing her hands and feet to ‘twist’ into awkward positions. She was unable to communicate and did not recognise her parents, even physically attacking them. Sarah said it was like a ‘devil had got inside of her body’ and her biggest fear during this time was that Freya would die.During her time in hospital, Freya’s awareness slowly improved. As she became more aware of her surroundings, Sarah reflected that this made the long plasmapheresis (blood cleaning) treatment sessions increasingly more unbearable for the family: Freya’s uncontrollable movements meant her parents had to hold her down during these sessions, to make sure she didn’t ‘rip out’ her intra-venous lines. Several weeks later, Freya started to smile, which signalled to Sarah that her ‘little girl [was] coming back’. At discharge, Freya was unable to walk or talk properly, but Sarah was hugely relieved that she remembered their family house. Her recovery from thereon was a very quick acquisition of skills, which Sarah helped her to relearn.Although Freya made a rapid physical recovery, Sarah explained how the encephalitis medication had suppressed Freya’s immune system. This resulted in numerous trips back to hospital every time she had a temperature and a delayed start to nursery, as Sarah was concerned about her catching an infection.Sarah described how, at the time of the interview, five-year-old Freya loved school and playing with friends. She explained how Freya had ongoing problems with poor sleep and was taking a slightly longer time to learn at school when compared with her classmates. However, despite these problems, Sarah felt the encephalitis had ‘no [ongoing] impact’ on her daughter, going on to explain how she felt lucky at Freya’s outcome, since, as she put it: ‘I didn’t even think she would live at one point, or go to school’. When considering the future, Sarah reflected: ‘I just want her to have a happy life … I would love to think that it [the encephalitis] will never come back again, but I don’t really know that’.Michael was eight years old when he developed Herpes simplex virus encephalitis. His mother Kathy, who works in management, was interviewed five years after her son’s hospitalisation. At this time, 13-year-old Michael was in secondary school and living with his parents and brothers. Although he had made a good physical recovery, Kathy described how poor memory and planning skills post-encephalitis illness had an ongoing impact on Michael’s day to day home and school life.Kathy described how Michael first showed signs of illness when he started getting headaches and subsequently became drowsy, with ‘slurred speech, like he was drunk’. Kathy took Michael to several health professionals before he was admitted to hospital and treated for encephalitis. Whilst he was, in Kathy’s words, ‘semi-unconscious’ in the emergency department, she recalls thinking: ‘I don’t care what he’s like, just don’t let him die’. The next morning, following emergency treatment and stabilisation, Michael was more awake, however Kathy likened him to a new born baby: ‘all floppy and slobbering from his mouth’. At that point, she was reassured that he wasn’t going to die but prayed ‘please God don’t let him be this bad for ever’.On the ward, Michael made slow improvements, but was distressed by frequent severe headaches. Kathy remembers Michael’s frustration when he struggled to recall words and feed himself and recounted his distress when his brothers made fun of his slurred speech. After three weeks, Michael was discharged home. At this point he was mobile but had frequent falls, fatigued easily and needed help with personal care. As the months passed, these problems slowly improved and he underwent a phased return to his primary school.Although Michael has experienced difficulties with memory and organisational skills since diagnosis, according to Kathy, the impact of these problems on his learning and wellbeing were amplified when he left the supportive ‘cocoon’ of primary school. Kathy explained that at secondary school, Michael has struggled academically, and describes himself as ‘stupid’. Furthermore, he regularly gets in trouble for messy handwriting, being late and forgetting his homework. Kathy attempted, on multiple occasions, to educate school staff about Michael’s condition, but felt that they only took notice when she threatened to remove him from the school. In her opinion, the lack of any obvious visible signs of Michael’s problems reduces people’s understanding of his condition.Kathy feels that she has become ‘over-protective’ of Michael since his illness and described how the family have altered their routines to support him, including helping him get washed and dressed in the mornings and arranging for him to get a lift or taxi home from school instead of the bus. Although Michael’s older brothers sometimes comment that Michael receives more attention than they do, they also protect and look out for him at school. Kathy expressed that they are fortunate, to have good ongoing support from their extended family.When asked for her opinion on Michael’s overall outcome following encephalitis, Kathy admitted that she used to grieve for the ‘loss of the child she had’, explaining that comparing her son to other 13 year olds highlights his difficulties and reduced independence. However, despite his problems, Kathy described her son’s recovery as a ‘miracle’, which she explained in contrast to another child who had encephalitis on Michael’s ward, who was left ‘paralysed and incontinent’.The cases presented above depict the typical experiences of parents regarding their child’s outcomes following encephalitis. In the sections which follow, we interpret the findings within themes by, firstly, describing how parents’ perspectives on their child’s outcomes shift in relation to their experiences at different temporal stages of the illness trajectory, namely those we classify as the: acute, recovery and reintegration stages. We then examine the ways in which parents use points of comparison, specifically between their own and other children, and problems faced at different times in the illness trajectory, to contextualise their understanding of their child’s overall outcome following encephalitis.When their previously healthy child was hospitalised with encephalitis, parents focused on the chaos that encephalitis had wrought on their child’s body and mind, disrupting their child’s ability to function normally. They recounted the loss of their child’s most basic physical and mental functions, including: reduced awareness of their surroundings, the inability to move body parts, communicate, see or even breathe on their own. For some parents, including Sarah, this loss of function was coupled with an understanding that their child’s body and mind had become chaotic, evidenced by the presence of fits, strange hand or leg movements and change in behaviour. Moreover, particularly for those parents, like Cynthia, whose children were treated in ICUs or HDUs, they saw their childrens dysfunctional bodies adorned with medical devices. These technologies, consisting of lines, tubes and machines, which were sustaining their child’s bodily functions, further emphasised the severity of their child’s condition. Almost all parents described how, at this stage of their child’s illness, they had an overwhelming fear that their child would die. However, as children started to recover from the acute phase of encephalitis, parents emphasised how new priorities developed.Many parents described a moment during their child’s hospitalisation, when they realised their child was showing signs of recovery. This turning point, as one parent labelled it, corresponded with the return of some element of their child’s physical or mental functioning, such as breathing for themselves, regaining sight, moving limbs, smiling and speaking. We see this reflected in the cases, with Hannah’s first movements and Freya’s first smile. Several parents, including Kathy, described how, only after they were reassured that their child was not going to die, could they start to consider outcomes beyond their child’s immediate survival.However, while parents recounted their relief when they realised that their child was starting to improve, some reflected on the fact that, as their child became more aware of their surroundings, their suffering conversely increased, as described in all the cases. These concerns were characterised in two ways. Firstly, parents including Kathy, highlighted the distress their child would experience as a direct result of the effects of encephalitis, such as suffering from headaches and the inability to control their own body. Secondly, they described how children were troubled by increasing awareness of painful medical interventions, such as cannulation. Many parents in the study found it extremely upsetting to witness the pain and suffering of their (increasingly aware) child. However, the realisation that their child was improving enabled parents to focus on their child regaining basic independent physical and mental functions, like walking, talking and eating and start to consider their reintegration back into their everyday life.Following discharge, parents described how, over time, they and their child resumed everyday activities including returning to employment and school. Below, we characterise the key challenges, as highlighted by parents, during this period and extending to the time of interview, in relation to the reintegration of children and families into the routine of daily life following encephalitis.Sequelae within a social context: At this stage of the illness trajectory parents discussed their children’s problems post-encephalitis within the context of their everyday lives, in four main ways. Firstly, parents described their child’s difficulties in terms of how they affected independence with regard to moving around and self-care activities such as dressing, toileting and feeding. Maximising independence was identified as a particularly important priority for older children and their parents, as highlighted by Cynthia and Kathy. Secondly, academic progress at school or nursery was a key concern, with some parents discussing the detrimental impact of encephalitis sequelae on learning, as highlighted in Michael’s case. Good school achievement acted to reassure other parents that the learning ability of their child had not suffered. Thirdly, parents including Cynthia and Kathy, described the impact of encephalitis sequelae on their child’s activity participation within the school and community environment. For example, parents focused on the extent to which their child’s illness had an impact on their ability to join in activities with their peers and make and maintain friendships. Finally, parents discussed their child’s problems in relation to the impact on their overall wellbeing and happiness. As expressed by Sarah and Cynthia, seeing their children happy and content, regardless of their specific difficulties, was stated by many parents as their most important priority.Modifiable external factors, including availability of resources, adaptations, support and the attitudes of others were felt by many parents to mediate the broader social impact of their child’s encephalitis sequelae. For example, lack of wheelchair facilities hindered Hannah’s participation in school swimming lessons, and limited understanding from teachers of Michael’s memory and organisation difficulties were felt by his mother to negatively impact on his learning and happiness. Many parents, particularly of children with less visible disabilities, described how additional resources  for their children were not always forthcoming. Moreover, when parents, like Kathy, saw their children suffering due to lack of resources, or un-supportive individuals/ organisational environments, they often adopted an advocacy role, taking it upon themselves to fight for extra support where needed. They did this by communicating with health/social care/educational services, to educate professionals about the impact of encephalitis for their child and secure extra resources, equipment or support. Parents, including Kathy, often described how this advocacy role was ongoing, as their child’s needs changed over time and they started new activities or moved to new school environments.Mediating factors and parental advocacy: Family impact: Parents also discussed the various ways in which encephalitis had impacted on themselves and other family members. In the initial phases of the illness, parents frequently described how they put their own day-to-day lives on hold whilst they focused their attention on their critically unwell child. Once their child started to recover, it was often necessary to resume employment and other activities, however the impact of their child’s condition continued to affect parents’ work and family lives. A concern for many parents, including Cynthia, was balancing the attention they gave to their affected child and their ‘healthy’ siblings, as well as being able to juggle the usual routines of work and family life. As a result, some parents needed to alter their own daily routine and work schedules to accommodate their child’s additional needs and the advocacy activities described above. Some parents, such as Cynthia, gave up work completely, to care full-time for their newly disabled child.Parents’ understanding of their child’s outcomes once they have returned to their everyday lives are therefore narrated in relation to, a) their child’s ability to function within their wider social world, b) the resources and support which mediate this functioning, and c) the extent to which these problems impact on parents and other family members.In addition to considering outcomes with reference to the day-to-day impact of problems described above, parents also assessed their child’s current situation by making comparisons to other children, and reflecting on their child pre- and post-encephalitis. 1) Reference to other children: comparisons were made to peers and siblings to understand how their child differed in relation to ‘normal’ development. Where children had ongoing problems, these comparisons often acted to highlight the difficulties their own children experienced, as illustrated by Kathy. Additionally, parents often compared their child to other encephalitis cases they had read about, or children they had met in hospital as a way of judging their child’s outcome, as we saw with Kathy’s comparison of Michael to another child affected by encephalitis. 2) Reflecting back in time: Parent’s would reflect, sometimes negatively, on the differences between their ‘healthy’ child, pre-encephalitis, and how their child was in the present. Kathy and the two parents whose children were babies at the time of encephalitis also referred to loss of the child that they might have had in the absence of encephalitis. In contrast, when parents reflected upon their child’s acute illness and hospitalisation, they made more positive evaluations of their child’s present outcome, with many, including Cynthia and Sarah, commenting on how lucky they felt that their children survived 3) Orientations to the future: Parents highlighted a range of concerns about how encephalitis might affect their child in the future. The uncertainty surrounding future outcomes impacted parents evaluation of their child’s current situation in three specific ways: a) Some parents expressed general worries surrounding their child’s future independence, employment and happiness, as voiced by Cynthia; b) many parents, particularly where their children had autoimmune encephalitis, were only cautiously optimistic about the future, as they worried about recurrence of illness, a concern that Sarah highlights; c) Some parents of young children, even those with an apparent full recovery, made reference to uncertainty about how their child would develop, concerned with whether problems would worsen or new ones become apparent over time as they became older.Parents evaluations of their child’s outcome therefore involved making comparisons to other children and an understanding of their current situation in relation to what could have happened or what still might happen for their child.In this study, parents discussed the varying ways in which encephalitis impacted on their child and family. The findings show how parents’ concerns about their child’s outcome evolved over the course of the illness trajectory. Furthermore, we have highlighted how parental perspectives on outcomes, following acute brain injury secondary to encephalitis, are informed by comparing their child’s actual outcome in relation to theoretical scenarios. Many of the specific contextualised concerns described by our parents have been previously highlighted in other encephalitis narratives  and broaCrucially, the findings have highlighted how parental perception on outcomes are underpinned by the particular temporal trajectory of a condition like encephalitis. As the child moves through different stages of the disease , the parental focus on outcomes shifts in parallel; their initial ‘biomedical’ focus on survival and the impaired body is replaced over time by attention to a child’s independence and ability to participate in everyday social routines. It is important to note that several ‘outcome frameworks’ have been outlined in wider literatures, which use hierarchies to model the complex interplay between different ‘levels’ of outcomes: differentiating between biomedical, clinically measured outcomes and those which relate to broader social concepts such as independence, participation and well-being , 30–32. In the context of encephalitis, understanding how people ‘make sense of the impact of illness within a social context’  is acknoAlthough modest in size, ours is the only known study to explore parental perspectives on outcomes following childhood encephalitis. Access to a large cohort of paediatric encephalitis cases through the UK-ChiMES and ENCEPH-UK studies, enabled accurate classification of encephalitis aetiologies and allowed purposive sampling to ensure diversity of characteristics within our sample. Although we analysed data from all encephalitis cases together, it was noted that the four children with autoimmune encephalitis and the child with ADEM generally made good recoveries: three of these five cases were felt by parents to have no resulting sequelae, unlike the children with other encephalitis aetiologies. However, these children often had severe and protracted acute illnesses. Furthermore, parents reported additional concerns relating to side effects of medication and fear of future recurrence, providing some suggestion that parental priorities for this group may differ in some ways to the other encephalitis aetiologies. Further research, using larger samples within each aetiology, would help to explore potential differences and similarities further. The finding that parental priorities on outcomes change over time could be further validated by longitudinal, prospective research, to enable serial interviews at different stages of the illness trajectory. Finally, although obtaining parental perspectives is important in its own right, their evaluation of the relative importance of some outcomes may differ to those of their children . Future Findings from our study have illustrated the importance of understanding encephalitis outcomes from the perspective of parents. However, as previously discussed, outcomes in previous encephalitis research have predominantly focused on objective clinical measures , 15, 16.In addition to considering which outcomes are important to measure and how to do this, we have shown that it is also important in encephalitis patients to consider the timing of outcome measurement, which has implications for trial design. For example, during hospitalisation, measurement of mortality and clinical/biomedical outcomes would be important to parents, whereas following discharge, measurement of outcomes which are influenced by social factors, such as quality of life, participation in daily activities and family/carer stress would better represent the impact of the condition on the child and family’s life. Furthermore, knowledge of how parental priorities evolve over time is useful for health care professions working with this patient group to better understand which concerns might be important to the family at different stages of the illness. Future longitudinal research looking at long term outcomes in children with encephalitis should incorporate a qualitative component with patients and their families, in order to ensure that any standardised measures of ‘outcomes’ are triangulated and compared with the experiences of patients and their families.S1 Appendix(PDF)Click here for additional data file.S2 Appendix(DOCX)Click here for additional data file.


This study examined the relationship between social-environmental influences and body image perception. Specifically, the study explored the perceived body appearance among young and older students attending higher education, and their eating experiences, as related to four main social-environmental circles: family, friends, work colleagues, and media. The present study interviewed 30 students (14 men and 16 women) ages 20–40. The findings show that most of the participants were concerned about their appearance, reported on various eating habits rooted on family tradition. Findings revealed differences among gender and age groups regarding, especially regarding sport and dissatisfaction with their own perceived appearance. Although more women reported on healthy eating habits and doing sport, they reported higher dissatisfaction with their body appearance. It was found that in both groups, family habits and their parents’ remarks about bodies had an ongoing effect and significant influence on their body self-perceptions. Further health promotion should be directed in particular to individuals with a perceived negative body image, in order to enhance positive body self-perception, implementing heathy eating habits and engaging higher commitment to sport.  Body image is defined as an individual’s thoughts, feelings, and behaviors associated with his or her appearance and physical ability . The intGender differences related to body appearance are a well-known and well-documented phenomenon ,5,6. GenInternational comparative studies conducted by the World Health Organization (WHO) in 1994 (including 28 Western countries) and during 1998 (including 44 Western countries) concluded that the frequency of dieting behaviors among Jewish-Israeli adolescents was the highest of all participating countries . FindingAge seems to be another important factor when studying body image. As mentioned before, most of the research on body image has focused on younger populations as children, adolescents, and young adults, whereas studies focusing on older adults remain limited. Available data suggest that older adults experience sociocultural pressures to conform to youthful appearance ideals pressures that affect one’s perceived body image . On the Purpose of this study was to explore body appearance perception among adults, and to examine how it is related to four main social-environmental circles: family, friends, peers, and the media.Studies on the effects of family characteristics and body image are mostly concerned with eating disorders . ParentsIn a rapidly changing society, peer groups have a great influence on an individual. Therefore, in addition to family and the media, one’s peer group and friends strongly influence the process of socialization and become ‘significant others’. Nowadays, social comparisons are related to the development of body dissatisfaction among children, adolescents, and adults. Tatangelo and Ricciardelli , in examSeveral studies have found significant correlation between exposure to Western media and body dissatisfaction ,25,26. OInternational studies conducted by the WHO between 1994 and 2014 mapped Israeli adolescents’ media exposure and usage. As Harel-Fish et al.  reportedThe present study intended to deepen our understanding of the influence of the individual’s social environment, in particular its influence on the individual’s habits, behaviors, and body appearance perception. It was expected that the main differences would emerge for gender and for age group. As such, women would be more concerned about their appearance and less satisfied with their body, and that their appearance self-perceptions would be lower than those of the men. A semi-structured interview was created based on the European Cooperation of Scientific and Technical Research Program entitled: “Appearance Matters: Tackling the psychical and psychosocial consequences of dissatisfaction with appearance”. The interview comprised three topics: (a) three questions referring to body awareness and body image, including personal perception of body awareness and body image, and habits concerning the body, such as, “What do you think about your body?” and “Are you doing any sports?” (b) four questions regarding the impact of agents of socialization on their body image , such as “Did your family members express any judgments, thoughts, and feelings about your body and body appearance?” and “Did your friends, peers, and colleagues express any judgments, thoughts, and feelings about your body and body appearance?” and (c) two questions regarding the impact of perceived body image and appearance on workers’ career, such as “Do you think that your body image and appearance have had influence in your working career?” and “Do you think that your body image and appearance have affected your career promotion?” see In addition, personal background was recorded . Thirty  adult students, born in Israel, agreed to be interviewed as participants for this study. They were recruited through researchers’ professional networks, through "snowball" sampling. All of the participants were learning at the higher education institutes in Israel, located in large cities and in the suburbs, at the center of Israel. The participants present a middle and upper socioeconomic class and belongs to Israeli-Jewish culture. 2  = 12.94, p = 0.23. However, due to the large age range, the participants were divided into two age groups based on the mean age of the entire participant group: 20–30 years and 31–40 . In order to examine differences in between each of the age groups and gender, two chi-square analyses were conducted. No significant differences were found between age and gender in the younger group, χ2  = 6.48, p = 0.16, and not for the older group, χ2  = 6.00, p = 0.31. As They were ages 20–40 . A chi-square analysis revealed no significant differences between gender and age, χAfter receiving the ethical approval of The Open University  the research team interviewed the participants. The research team consisted of the two authors and a master’s degree student assistant who was familiar with the subject, specialized in interviewing and in conducting qualitative analysis. The potential benefits of a qualitative approach include the opportunity to access meanings, perspectives, and interpretations from different groups of people . TherefoData Analyses: Qualitative analysis was conducted to identify themes in the data. The authors conducted thematic analysis manually, because no previous studies had examined the relationship between body appearance and the ecological aspects of social-environmental circles. The authors and the research assistant separately coded the themes and reviewed the coded list together. Topics associated with gender and age were identified and labeled in the transcript margins . The codThe themes were analyzed by gender and age groups: The participants were asked about their body awareness, satisfaction, and dissatisfaction about appearance. It was found that almost all women in the younger age group (20–30 years) loved their bodies: “I live with it in peace”, whereas the least favorite body parts were the knees, hands, breasts , bottom, and belly. About 66% of woman in the second age group (31–40 years) did not love their bodies and were dissatisfied with their appearance. The main reason for dissatisfaction was that they felt overweight; in particular, they were dissatisfied with their bottom and belly. Regarding men, most of the younger participants were satisfied with their bodies; their favorite parts were their legs, hair, face, and eyes, and their least favorite body issues were teeth that stuck out, a large belly, a long, prominent nose, and noticeable ribs. However, only half of the second age group of men reported being satisfied with their bodies and their appearance. Their favorite body parts included the head, face, hair, and their upper-body muscles, whereas some of them were not satisfied with their belly and legs.All men ages 20–30 reported that they did not have special eating habits. For example, “There is no strict adherence to healthy food; on the contrary—I eat everything, including fatty food and even at night”. Only two adults noted that they had poor eating habits: “I eat far more than I need, at bad hours, unhealthy food”. Another one reported he had changed his eating habits because of a medical condition (“I had cancer”). Seventy-five percent of the men in the second age group (ages 31 and over) indicated they had special eating habits, such as, “in the morning only cheeses and vegetables after the walk, no lunch and no fat food, only vegetables with chicken or fish, and in the evening, fruit or a cup of coffee”. Only one noted he had no eating habits: “Here and there I eat occasionally—a lot of snacks because of the patience needed to sit down and eat”.Contrary to men, the younger women (ages 20–30) mentioned and detailed their eating habits and food that focused on “healthy eating”. Even if some women replied that they had “no eating habits”, they all noted they “tried to eat healthy”. Some of them stated that they ate healthy foods such as fruits and vegetables, and some clearly noted eating habits such as “six small meals a day, eating only when starving, focusing on vegetables and fish, lower-fat meat with nutritional supplements, in the morning coffee and an energy snack, a regular lunch, and in the evening something small”. Only one noted that having “bad eating habits—such as eating the remains of her children’s food”. Most of the women in the older age group reported they did not have special eating habits, and one woman said she did not eat meat.The eating habits were an important topic in the participants’ answers. In general, most of the women said that their family emphasized healthy foods and healthy eating habits. For example, “my mother always told me to listen to my body”, and “both of my supervisors are on Weight Watchers so they maintain a healthy diet, and therefore we eat health food”. In addition, the participants were asked regarding sport activities. Half of the younger men reported that sports activities as a lifestyle for them such as football or attending the gym center. They noted that any sports activity might help “the body feel better, as well as its emotional affect. The men who were not engaged in any sport had some excuses such as past injuries. Most men ages 31–40 indicated they did not exercise on a regular basis, but they considered sports to be an important issue. They described their sports activities as going to the gym, surfing, biking, and playing handball, but they stopped for health reasons. The participants who exercised described the activity as “a great pleasure”. Some of them viewed sports as an opportunity to maintain a healthy body, “balance my cholesterol, lower my blood pressure, and maintains muscle flexibility”. Others wanted to “burn calories” and considered any sport as social entertainment while they were active. Within this age group, we noticed that this group also considers practicing sports to be a social activity. Women in the younger age group reported being mostly active in sports, had strict eating habits and tried to eat healthy, compared to men in their age group. Women in both age groups were more conscientious about eating healthy foods than the men were, whereas men in the older age group reported healthier eating habits than the younger men. Women appear to make a greater effort to form healthy food habits over the course of their lives, whereas men seem to change their eating habits as they get older. Half of the women ages 31–40 reported being occasionally engaged in doing sports activities. Some of the women had excuses for not regularly practicing a sport. One said that she stopped after getting pregnant; another stopped for medical reasons: “I had a surgery”. No significant differences were found between genders in engagement in sports activities. By exploring the perception the participants’ families, it was found that the family is the most powerful and important values and norms about the body and appearance. Following the interviews, it appears that most of the women ages 20–30 discussed their appearance or their bodies with their family members. They indicated they sought to hear the truth rather than “what you think you want to hear”. The women described their conversations with their mothers as significant when talking about their bodies and appearance. Participants also reported having received feedback and comments from their families on the participants’ need to lose weight. Although no homogeneity was found in the women’s responses, interesting to note that all the interviewees said their family members commented on their body appearance in one way or another. Some interviewees said the family feedback affected them, whereas others said it did not. However, they always discussed their appearance, especially with their mothers. One woman (age 24) said, “If they have compliments, they can say it, if something is bad—then they will keep it to themselves”. Another woman (25) said, “They know that I do not like this talk about my appearance, so they try not to talk about it” (age 24)”. Yet another (age 23) said, “It was a time when I was fatter and I had to lose weight. The comments were negative but I agreed with them. That was one of the things that helped me go on a diet”. Finally, one said, “My family usually was judgmental regarding my body and appearance. They always expressed positive and negative judgment”. In general, for all of the women, positive feedback from the family members was associated with looking slim or skinny, and negative feedback was associated with looking fat.Among women in the second age group (31 to 40), large variation was present in the discourse on one’s body and appearance. Some women reported they did not talk at all with their families about their bodies or appearance; others talked about changes in their bodies because of births. Some did not perceive these conversations as meaningful, whereas others did. Most women described the negative affect of conversations with their parents. These negative comments were mostly about weight gain or unsuitable clothing, such as, “my parents’ remarks make me hate my body”. A few women complained that their fathers were “usually telling me and my sister that we are fat, and always told me we are not looking good enough”, or being confused by contradicting reactions to her appearance: “My parents said I was not pretty enough, but I got good feedback from my friends”. Some women remembered positive comments from their families, such as “you look good”. Other survey respondents remembered, “there were mostly positive comments and a lot of support” (age 33) and “no criticism, only sympathy; my parents knew that negative words make me feel sad”. One woman (age 32) remembered receiving exceptional support from her parents during adolescence: “My mother was very supportive and we talked about my body appearance a lot. They did not try to prevent me from doing surgery; on the contrary, they understood that it was important to me”. Women in this age group said that they mostly talked about appearance and body image with their children and a little with their extended family, “I talk about my body all the time; it’s very important to me. It is important for me to let my children be proud of themselves and to love the way they are and their bodies”.When asked about family comments regarding their bodies and appearance, the young men (ages 20–30) noted that “the discussion was not important” or “it was not significant”. Family discussion focused either the need to be thin or on being too thin: “the family thought it was necessary to lose weight” or “I am constantly reminded about thinness, so I do not comment on anything and it does not bother me”. In general, the issue of family remarks seemed to be less important for the men than for the women. The group of older men indicated a varied discourse—both positive and negative—with their families about body appearance and performance. For example, one man (age 37) said, “My family says I look good”, whereas another (age 34) said a family member had commented, “Your belly grew; take care of yourself”.In summary, family appears to have a significant influence on body perception, body image, and appearance among men and women in both age groups. The effect is complex and is expressed in a variety of responses and implications for both positive and negative performance and perception today.In this study, the interviewees discussed to the question regarding the impact of their friends, peers, or colleagues on their body perception. Women ages 20–30 indicated looking good was important to them. Some of them received positive responses, mainly comments regarding weight loss. One woman (age 24) said, “Friends express their opinion all the time in a positive way in the context of the body, in terms of overall appearance, clothing, and hair. As far as I was concerned, it was very flattering and confidence building”. Another woman (age 25) said, “My friends only comment if there is something positive”. Meanwhile, many women described negative comments. For example, one respondent (age 23) was told, “It would be nice to be less fat” and said “A colleague told me that sometimes I eat too much. Sometimes I agreed, especially when I was really fat, and sometimes I thought it was rude”. From participants’ disclosures, it appears that school peers’ comments might affect a person entire life. One woman (age 30) recalled, “In high school, boys used to call me ’fat girl’ for a long time. I pretended that I did not take it seriously, but I was sad”. Many women in the older age group reported receiving negative reactions to their appearance and said that the subject of thinness came up often. For example, “In elementary school, I was quite fat; friends were constantly talking about weight loss and diet” (age 33) and “negative judgments hurt and are insulting; this led me to have a negative perception of my body”. Today, looking good is important for most of them: “I compare myself with friends but I do not compete. I’m very careful about dress and it’s important to me what my friends say” (age 40). Among women in both age groups, comments regarding losing weight seem to have the most significant impact.Like the women, men admitted that it was important for them to look good and getting reactions from their friends. However, in general, men seem to be less insulted or less hurt when talking about body weight. Men (ages 31–40) reported receiving fewer responses to their appearance today than they once did: “During the school period, I was at the beach a lot and I used to practice a lot, and my friends loved the muscles in my body” (age 34). Those that recalled recent responses reported they were often negative: “My friends express judgment on my belly. They are joking by asking, ‘What month of pregnancy are you?’ It is a little insulting, but they are right. They make comments about me being overweight, because they knew me a long time ago and see that I’m fat now” (age 33). In general, men in both age groups discuss weight and body appearance with their friends, but the discussion seems to be less significant than among the women. All men felt it is important to look good, but for the older adults, looking younger than their actual age was also important.The media effect can be viewed as the external system that jointly influences the individual’s social, cultural, ideological, and belief systems. When asking about models in the media, the younger women admire female models. They love them because they are beautiful, and they love what they represent (age 28): “I admire an actress named Mila Kunis, who is married to Ashton Kutcher, because of her beauty”. Few women referred to male models, although one commented, “Mark is a Hawaiian player, looks good and is muscular; I tried to learn Capoeira because of him” (woman age 30).Women ages 31–40 referred to role models who represent elegance, power, and/or wealth: “I liked Miss Arison (a rich and a powerful Israeli bank woman). There are many things to imitate: her conduct, the fact that she fulfills herself, and she looks good” . For this age group of women, appearance does not appear to be the main characteristic they would like to imitate. Men in the younger age group reported that football players were their role models: “I really admire him because he was a good football player” . The interviewees also added that they liked the players “because of their abilities”. One of them  presented a complex picture, as he admired the beauty of artists, their character, and appearance”. “I have two models. I imitate their self-confidence, as I put my hands in my pockets and talk like them”.For men in the second age group, friends and family members became their role models. One man  said, “My son is a role model of how I would like to see myself. He is just as I was young”. Others said, “I had a friend who was a singer; I admired him”  and “My grandfather was my model: he was tall, dressed well, and always said to raise the head, to walk straight ahead”. Regarding the media effects, from our interviews, role models can be famous artists or people recognized from the past. Imitation mainly existed among the younger age group. Within this study, most of the participants addressed the importance of one’s look and appearance at work, primarily in job interviews. However, gender differences revealed that men are less offended when talking about weight. Women emphasized the mixture of good or nice appearances with the benefit of succeeding at work. “My good appearance helped. Being good looking opened opportunities for me” . “My good appearance helped a lot; for example, in work interviews, people like to see good-looking employee, and the boss might give me a higher position” . Some of the respondents reflected on the negative aspect of body appearance and its effects on jobs or promotions: “A friend that dresses good was promoted” . “Yes, I think that appearance always helps the way people are treated and it affects whether you get the job or not. Weighing more will make other people look at me different” . “A bookkeeper said that I was fat and not appreciated; although in practice, I was a professional” . In addition, participants reported on close relationships between body image and appearance though performance at work. For example, “In my work interview, how I look is one of the aspects that determines whether I get the job or not” ; and “The way my body looks affect how I feel” . Our results revealed that participants were concerned about their general body appearance, including their weight, across age groups and gender. Although many people were unsatisfied with their appearance and/or their weight, they failed to persist with sports and/or dieting. These results are in line with Bibiloni et al.’s  showing In addition, young women reported having heathy eating habits, whereas the older group of women did not. Although it is not a causal statistical study, our research shows that the relationship between no healthy eating habits, increased weight, and being only partly active in sports is apparent. The implications of these findings could be applicable across country, age, and gender: the triangular connection between age, eating habits, and sports must begin at an early age.Implementing specific learning programs from kindergarten through adulthood regarding heathy eating norms and outdoor activities might be worthwhile. In particular, the findings revealed the significance of the parents’ comments on one’s perceived body appearance, especially among women. The present findings are consistent with previous findings regarding Israeli social interactions in the family ,11. The The present study examined the relationship between social-environmental influences and body-image perception. Family habits and parents’ spoken observations (positive and negative) about their children’s bodies had an ongoing and significant influence on the participants’ body appearance and body-image perceptions among both genders in all both groups. Even among men, in both age groups, thinness and impressive body presentation took up significant social space; all of the men felt that looking good, appearing attractive, and wearing fashionable clothing was important, and the older group felt that looking younger than their chronological age was especially important. However, the subject of body appearance was less emphasized among men than among women. Frisén and Holmqvist  noted thAt work, respondents of both genders maintained a dignified appearance and reported that body appearance had an effect on their success at work or in their careers. However, participants indicated that external appearance is insufficient for career success, and that bosses and co-workers also judge them for their professionalism and integrity. The present findings contribute to our knowledge regarding the relationship between social and psychological experience related to body perceptions, and highlight the vulnerability of both genders. The findings indicated that women tend to have lower body image than men, are more concerned with weight and dieting, and exercise less than men. This study might be the first attempt to examine body issues and the impact of the family, social environment, and media according to the individual’s gender and age. Although the study did not focus on the causality model, the findings expressed participants’ needs for specific help to increase awareness of self-perception, well-being, and body perception in order to reduce their negative experiences. The present study can be viewed as a pilot study. The findings present the voice of 30 students, representing a homogeneous socioeconomic and Israeli-Jewish culture; the participants belong to middle and upper class, Caucasian sample. Therefore, the results should be cautious about generalization of the qualitative findings to populations that differ in social class, religion, and ethnicity. Additional studies are needed to explore the experiences of adults after a training program, and to verify the program’s effects on body image. These future studies need to undertake comprehensive, longitudinal, in-depth mixed-methods, including questionnaires and interviews, including a variety of adults with different backgrounds, which might deepen our understanding of body self-perception.


Autism Spectrum Conditions (ASC) can be reliably diagnosed by 24 months of age. However, despite the well-known benefits of early intervention, there is still a research-practice gap in the timely identification of ASC, particularly in low-resourced settings. The Social Attention and Communication Surveillance (SACS) tool, which assesses behavioural markers of autism between 12 to 24 months of age, has been implemented in Maternal and Child Health (MCH) settings, with excellent psychometric properties. ASDetect is a free mobile application based on the SACS, which is designed to meet the need for an effective, evidence-based tool for parents, to learn about children’s early social-communication development and assess their child’s ‘likelihood’ for ASC.The primary aim of this study is to evaluate the psychometric properties of ASDetect in the early detection of children with ASC. A secondary aim is to assess ASDetect’s acceptability and parental user experience with the application.Families are recruited to download the application and participate in the study via social media, health professionals  and word of mouth. All participating caregivers complete a demographic questionnaire, survey regarding their user experience, and the Social Responsiveness Scale-2 (SRS-2), an autism screening questionnaire; they are also invited to participate in focus groups. Children identified at ‘high likelihood’ for ASC based on the ASDetect results, the SRS-2 or parental and/or professional concerns undergo a formal, gold-standard, diagnostic assessment. Receiver Operating Characteristic analyses will be used to assess psychometric properties of ASDetect. Thematic analyses will be used to explore themes arising in the focus groups to provide insights regarding user experiences with the app. Multiple regression analyses will be carried out to determine the extent to which demographic factors, parental stress and beliefs on health surveillance and child results on ASDetect are associated with the parental user-experience of the application.With a strong evidence-base and global access, ASDetect has the potential to empower parents by providing them with knowledge of their child’s social-communication development, validating and reassuring any parental concerns, and supporting them in communicating with other health professionals, ultimately enhancing child and family outcomes and well-being. According to the Diagnostic and Statistical Manual of Mental Disorders DSM-5 ), Autism , AutismEarly predictive behavioural markers of autism can be observed during the second year of life , and autThe first potential barrier towards timely identification of autism is availability of feasible tools with good psychometric properties. The Social Attention and Communication Surveillance- SACS, –29) and  and 29])As the SACS is best used within a universal healthcare system, whereby toddlers regularly have access to healthcare professionals trained to monitor children’s development, its use may be limited in communities where access to universal healthcare is absent or inadequate, or in developing nations where the resources to train professionals may be insufficient . MoreoveA method whereby an ‘expert on the individual child’  utilises evidence-based information, and taking this to ‘experts in children’s social communication development’, may prove fruitful in facilitating autism identification. Technology could therefore be used to bridge the gap that currently exists between parents’ first concerns and access to expert professional information in children’s social-communication development, providing them with evidence-based information to communicate with healthcare professionals and advocate for their child.asdetect.org) is a parent-led mobile application, available globally, free-of-charge, on Android and Apple platforms to anyone with smartphone or tablet access. It is designed to give parents of 11- to 30-month-old children the ability to assess their child’s ‘likelihood’ for autism in their own home, based on the early behavioural markers of autism identified in the SACS [ASDetect , demonstrating key social-communication behaviours at 12, 18, and 24 months of age, comparing autistic, and non-autistic, children; this resulted in an app that is both an early detection the SACS , 28 are The primary aim of this evaluation study is to assess the psychometric properties of ASDetect in identifying young children with ASC. A secondary aim is to describe parental/caregiver acceptability, satisfaction, and user-experience of ASDetect and how they are associated with parental/caregiver demographics, stress, and beliefs regarding health and developmental screening, as well as child characteristics and results on the ASDetect.The study includes two phases: Phase 1 involves all families who have registered for the ASDetect Evaluation Study and complete at least one assessment for their child in ASDetect; they then complete a survey regarding their user-experience, and an autism screening questionnaire . All pa, . All pFamilies are invited to use ASDetect via advertising through social media , word-of-mouth, and pamphlets delivered to health, community, and education centres . Another stream of recruitment is practitioner-led recruitment via Maternal Child Health (MCH) nurses . All families registered in the study are instructed to download and use ASDetect. Upon completion of at least one ASDetect assessment, all parents are prompted to complete a demographic questionnaire and a user experience survey, and invited to participate in focus groups.This phase is designed to assess the psychometric properties of ASDetect in identifying children on the autism spectrum. This phase involves a free developmental assessment by the ASDetect team at La Trobe University (LTU) for children at ‘high likelihood’ for ASC on ASDetect. When recruiting for participation in the study, families are notified that they may be contacted by a researcher at some stage during the study and invited to participate in research activities, but no information about what this entails is given. This is to ensure that participants do not actively seek to produce a ‘high likelihood’ result on ASDetect to access the free assessment.all children (both high and low likelihood) are sent, via email, the SRS-2 to fill out when the child is at least 30 months of age. Children with a “low likelihood” result on ASDetect but score in the “mild to severe” range for autism on the SRS-2, are invited for an assessment. Having SRS-2 data for all children allows us to use established cut-offs for autism on the SRS-2 to estimate false negatives rates in the “low likelihood” group. Additionally, parents/caregivers, MCH nurses, or other professionals who contact us with concerns about a child’s development (regardless of the concern) are also invited for an assessment , and scoring below the autism cut-off on SRS-2, are not conducted, as it is not ethically, practically, or financially feasible to do so.Over and above the procedure specified above, developmental assessments to find any further “false negatives” for children with a “low likelihood” ASDetect result, ASDetect App (asdetect.org)- After downloading the app and providing basic details, the most relevant assessment is then selected for the parent to complete, with three age-windows available ; participants are unable to complete an assessment that is not within the age parameters of the child being assessed. Each assessment contains 10–15 behavioural items, with five “key” markers of autism at each age, which are a direct translation of the SACS-R items, as identified in [ified in . For eacEmail reminders are sent after seven days if a family has registered a child but has not completed the relevant assessment, and another reminder is sent 28 days before the eligibility window expires for their child’s assessment. ASDetect sends participants reminders that their child’s next assessment can be completed, until this no longer becomes relevant . This is to encourage a “developmental surveillance” approach to the early identification of autism, upon which the SACS-R framework is based.Upon completion of the assessment, users are given an immediate on-screen result of either ‘low’ or ‘high’ likelihood of autism for their child, accompanied by brief “next steps” . Users also simultaneously receive a comprehensive formal assessment results email summarising their child’s results, whether the child was identified as performing each of the behavioural items ‘typically’ or ‘atypically’, as well as a summary and link to the evidence on which ASDetect is based. This email is designed to be taken to their local doctor or other relevant healthcare professional.Demographic Questionnaire – a demographic questionnaire is completed by the child’s primary caregiver, detailing each caregivers’ age, education, occupation, employment status, and country of birth; child’s age, gender, and place of birth; other languages spoken at home; family structure and annual income; number of siblings and any family history of autism or other developmental conditions.The ASDetect Feedback and Outcome Questionnaire is a purpose-developed, self-report questionnaire administered to the parents/caregivers via email one month after completion of the first ASDetect assessment. The questionnaire was constructed using some items from Crane et al.’s (2016) survey [:) survey , adaptedParents/caregivers are asked to indicate the age of the child when initial concerns were noted, when these concerns were first raised with a health professional, and what the outcome of the consultation was. Parents/caregivers are also required to detail any subsequent outcomes after receiving an on-screen result of either ‘low’ or ‘high’ likelihood of ASC from the ASDetect app .Using 5-point Likert scales (‘strongly agree’ to ‘strongly disagree’), parents/caregivers indicate their satisfaction with different aspects of the app, as well as their overall experience in using ASDetect as an early screening and developmental surveillance tool designed to assess their child’s likelihood of autism.Using 5-point Likert scales (‘strongly agree’ to ‘strongly disagree’), parents/caregivers report on the process of receiving results from ASDetect regarding their child’s likelihood of ASC, whether they would have preferred to receive the results in the presence of a primary health care professional, and their feelings/emotions at the time.Using 5-point Likert scales (‘strongly agree’ to ‘strongly disagree’), parents/caregivers report on their beliefs relating to general health screening and autism-specific developmental surveillance.. The K10 is a widely used screening measure to assess psychological distress in clinical and epidemiological research, with norms validated in the Australian population [The Kessler Psychological Distress Scale , is inpulation . Items aThe Social Responsiveness Scale–Second Edition  is scale measuring differences in social behaviour associated with ASC. It is completed by caregivers of children aged 2.5 to 4.5 years, and includes 65 items scored on a 4-point Likert-type scale. T-scores  are obtained for five subscales and the overall total score: Social Awareness, Social Cognition, Social Communication, Social Motivation, and Restricted Interests and Repetitive Behaviour. Age-normed cut-offs for total T-scores are available to indicate the presence and severity of clinically significant difficulties in social functioning that interfere with interactions with others. The SRS-2 has excellent predictive validity for autism, with sensitivity of .92 and specificity of .92, based on a general population standardisation sample [n sample .Focus groups – all parents registered in the study are invited to attend focus groups at LTU, and participants are compensated for their time and travel costs. The focus groups are conducted separately for parents of children with “high” and “low” likelihood results on the app. Parents are prompted to discuss their views and experience of using the app, and how this affected the diagnostic process (when applicable), their stress, and coping. A moderator guide for these groups was developed in consultation with two experts in focus groups and qualitative research, who also reviewed the guide. Additionally, it was reviewed by three experts in autism who also have experience in conducting or supervising focus groups. The groups take place at a secure, private room, and are facilitated by a researcher who was not involved in the development of ASDetect. The sessions are recorded, and then transcribed by two researchers. The NVivo10 software [software , will beThe developmental assessment includes gold-standard tools for early autism diagnosis (detailed below), based on the child’s age. The children are assessed by a research team of registered psychologists who are researcher-reliable on the assessment measures, supervised by the lead author (JB), who has extensive expertise in the early autism phenotype. The clinicians are blind to the child’s ASDetect results, to decrease potential biases in the initial assessment outcomes. Based on the standardised observational measures, clinical observations, and parental reports, clinicians assign the child a best estimate diagnostic status at 12 and 18 months, and diagnosis is confirmed at 24 months, or at 30/36 months, if required, based on the child’s presentation.Mullen Scales of Early Learning (MSEL) - The MSEL [M = 100, SD = 15) based on four standardised scales : fine motor, visual reception, expressive language, and receptive language. The MSEL is widely used with infants and toddlers in ASC research [The MSEL  assess dresearch , 49. Excresearch , 50.Autism Diagnostic Observation Schedule-2 (ADOS-2) – the ADOS [the ADOS  is a semthe ADOS ;) was deAutism Diagnostic Interview-Revised . , is administered during the assessments of children who are < 24 months of age. Caregivers are asked about the child’s medical and developmental history, child’s attainment of developmental milestones and social-communication skills, the presence of any restricted, repetitive, or sensory behaviours or interests, their current skills and difficulties, and parental concerns.Vineland Adaptive Behaviour Scales-3 (VABS-3) – The Vineland-3 [M = 100, SD = 15 in domain and composite scores). The Vineland-3 has strong psychometric properties, with internal consistency alpha coefficients ranging from 0.90 to 0.98, test-retest reliability coefficients ranging from 0.80 to 0.92, and inter-rater coefficients from 0.70 to 0.79.neland-3  is a comBrief Infant Sleep Questionnaire  – the Be  -the CSe . The BA platform. All collected data that is available for use will be accessed and exported by authorised personnel in the research team via Salesforce.Caregiver questionnaires (detailed above) are completed via Qualtrics , and theN = 122) that they had prior concerns regarding their child’s development prior to using the app [A Receiver Operating Characteristic (ROC) power analysis using MedCalc , revealed that the minimum number of children needed to be monitored with ASDetect is 700 for .80 power. We therefore aim to monitor a total of 1000 children altogether to allow sufficient power and account for drop-out and consent to participate. Based on pilot results from completed ASDetect assessments, approximately 18% of children monitored were identified at ‘high likelihood’ for autism; this is a much higher rate than that found in the SACS-R (~ 2%), which may be explained by the fact that 71% of parents indicated in a previous user survey  “true positive” – children who are identified at “high likelihood” for autism on ASDetect and their diagnosis is confirmed as ASC; 2) “false positive” – children who are identified at “high likelihood” for ASC on ASDetect and their diagnosis was not ASC ; 3) “false negative” - children who are identified at “low likelihood” for autism on ASDetect and have received a diagnosis of autism – these children will be identified via: a) scoring above the SRS-2 cut-off for ASC, b) parents/professionals have contacted us with their concerns about the child, c) incidental reports by parents to the research team informing us that the child received a diagnosis in the community by a paediatrician, registered psychologist, or multidisciplinary team; and 4) “true negative” - children who are identified at “low likelihood” for autism on ASDetect and have not met any of the criteria as mentioned in point three above. Sensitivity, specificity, positive and negative predictive value will be estimated based on these rates using ROC analyses. The validated SRS-2 cut-offs will be used and their concordance with the results of the gold standard assessments will be examined.Aim 2: Acceptability and user experience - Survey responses from all families will be analysed and descriptive results will be used to assess the parental user experience of the diagnostic process using ASDetect, their satisfaction, and their opinions regarding disclosure of the results via the app. The survey will also inform referral pathways leading families to the app , and potential enablers and barriers to using the app . Factor analysis will then be used to generate overall acceptability and user experience scores based on survey responses. Multiple regression analyses will then be carried out with these scores as dependent variables to determine the extent to which demographic factors, parental stress, beliefs on health surveillance, and the assessment results are associated with their user-experience with ASDetect.In addition to the quantitative data regarding acceptability collected via user surveys from all participants, two focus groups (“high” and “low” likelihood groups) will be conducted to collect in-depth information regarding users’ experiences, including their views, beliefs, and motivations in using the app. Raw data from the focus groups will be coded, and the data will be categorised into key themes by two independent researchers. Two coders will independently code the transcripts to establish interrater reliability of at least 80% agreement . To bestThe main aim of this study is to evaluate the psychometric properties of ASDetect, an evidence-based app for the early detection of autism. This will be investigated through Receiver Operating Characteristic analyses, based on diagnostic outcomes of children identified at ‘high likelihood’ for ASC based on ASDetect results, the SRS-2 or parental and/or professional concerns. A secondary aim is to describe and predict acceptability, satisfaction, and user-experience of ASDetect with parents and caregivers.One of the strengths of this evaluation study is its use of a community-based sample. Many studies assessing early autism “likelihood” use selective “high-risk” samples , and are more likely to include children with less symptomatic autism, and families with higher socio-economic background, limiting the generalisability of the results . Based oand 2) did not have any parental and/or professional concerns, and 3) did not score above the autism cut-off on the SRS-2. This is an (unfortunately) necessary limitation of large-scale screening studies, which means that true “false negatives” can only be estimated based on random sampling of a subset of children at “low likelihood” of autism, or, as per this study, follow-up of ALL children who have parental and/or professional concerns , and inclusion of a secondary screener (SRS-2), implemented when the children are older (at 30 months).The main limitation of this large-scale study is that it is not ethically, practically, or financially feasible to assess all 1000 children who are registered as part of the study, who: 1) were not at ‘high likelihood’ for autism, and education tool for autism. Furthermore, by 2020, 80% of the world’s 6 billion smartphone users will be from the developing world, providing enormous scope for ASDetect’s use in these countries [In conclusion, ASDetect, an evidence-based app for the early detection of autism, provides a “safe space” for parents to explore their concerns in their own home, prior to raising these concerns with a professional and/or other family members, which can often act as a barrier to help-seeking. It has the potential to empower parents in communicating their concerns and support them in engaging their local, relevant, healthcare professionals. It also can promote parent literacy on social-communication milestones and the early indicators of autism – thus, ASDetect is both an early detection ountries .Additional file 1. 21576 ASDetect Eval Study DL_Brochure