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The transition to adulthood is typically marked by changes in relationships with family members, peers, and romantic partners. Despite this, the family often maintains a prominent role in young adults’ lives. A scoping review was conducted to identify the factors that influence families’ ability or capacity to provide young people with emotional support during the transition to adulthood, and to understand the gaps in this research area. Title and abstract searches were conducted from January 2007 to February 2021 in multiple databases, including PsycINFO, MEDLINE, and Sociological Abstracts. Fifteen semi-structured interviews were also conducted with stakeholders (professionals from relevant sectors/working within this field). In total, 277 articles were eligible for inclusion in the review. Following data extraction, 19 factors were identified. Factors with the most research (more than 20 articles) included: family proximity or co-residence; mental health; sex or gender differences; and family communication. Factors with less research included: societal context; young person’s sexual orientation or gender identity; social networks; and adverse life events. Gaps in the research area were also identified, including methodological issues (e.g., lack of mixed methods and longitudinal study designs), a disproportionate focus on the parent–child relationship, and a lack of contextually situated research. Our findings indicate that future research in this area could benefit from taking an intersectional, multi-method approach, with a focus on the whole family and diverse samples.

Background Transition from child-centred to adult mental health services has been reported as challenging for young people. It can be especially difficult for young people with autism spectrum disorder (ASD) as they manage the challenges of adolescence and navigate leaving child and adolescent mental health services (CAMHS). Aims This study examines the predictors of transfer to adult mental health services, and using a qualitative analysis, explores the young people’s experiences of transition. Method A UK sample of 118 young people aged 14–21 years, with ASD and additional mental health problems, recruited from four National Health Service trusts were followed up every 12 months over 3 years, as they were discharged from CAMHS. Measures of mental health and rich additional contextual information (clinical, family, social, educational) were used to capture their experiences. Regression and framework analyses were used. Results Regression analysis showed having an attention-deficit hyperactivity disorder diagnosis and taking medication were predictors of transfer from child to adult mental health services. Several features of young people's transition experience were found to be associated with positive outcomes and ongoing problems, including family factors, education transitions and levels of engagement with services. Conclusions The findings show the importance of monitoring and identifying those young people that might be particularly at risk of negative outcomes and crisis presentations. Although some young people were able to successfully manage their mental health following discharge from CAMHS, others reported levels of unmet need and negative experiences of transition.

Despite the high frequency of anxiety and depression symptoms in individuals with Autism Spectrum Disorder (ASD) and a significant impact of these comorbidities on both individuals with ASD and their families, research on the validity of anxiety and depression measures in the ASD population is currently lacking. The aim of this study was to explore the psychometric properties of the Hospital Anxiety and Depression Scale [HADS; Zigmond & Snaith, ] in a sample of older adolescents and young adults with ASD. One hundred and fifty one participants (UK Transition longitudinal study: N = 106; 75 males, Mage = 16.04 years, SD = 1.28; Longitudinal Study of Australian Schools Leavers with ASD: N = 45, 30 males; Mage = 18.35 years, SD = 2.55) completed the HADS and a range of mental health and well-being measures. Combination of the Principal Component Analysis and Parallel Analysis indicated two factors as an optimal solution in our sample, accounting for 43.77% of variance with factors being identical in terms of content with the structure found in the general population. Internal consistency was good for the HADS anxiety scale (HADS-A; .82-.84) and acceptable for the HADS depression scale (HADS-D; .60-.72). Convergent validity of both HADS-A and HADS-D scales was excellent and divergent validity was acceptable. Our study represents a significant contribution to the literature by providing an initial validation of the HADS in older adolescents and younger adults with ASD. Autism Res 2018, 11: 258-269. © 2017 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY Research on the validity of measurement of anxiety and depression in ASD is currently lacking. The aim of this study was to explore the properties of the Hospital Anxiety and Depression Scale (HADS) in a sample of 151 young people with ASD. Participants completed HADS and a range of mental health and well-being measures. Encouragingly, our findings suggest that HADS provides a reliable and valid assessment of anxiety and depression in ASD.

For young people with autism spectrum disorder (ASD), the transition from childhood to adulthood especially for those with additional mental health problems can be challenging. Increasing numbers of young people attending child and adolescent mental health services (CAMHS) have a recognised diagnosis of ASD. What are the outcomes of these young people when they are discharged from CAMHS and how best can services support their needs? In this editorial we consider the emerging literature on transition for young people with long-term conditions and in particular those with ASD. Longer term studies suggest that the outcomes for individuals with ASD across the ability range is mostly poor and that healthcare transfer has generally not been managed well, with service users often reporting a lack of appropriate types of support. Encouragingly there is an increasing awareness of the need to support young people with long-term conditions as they negotiate the many developmental tasks of transition to adulthood. However, less is known about the experiences and aspirations of autistic individuals of all abilities as they transition to adulthood. This knowledge can inform a more nuanced approach to identifying developmentally appropriate outcomes. Recent studies with cognitively able young people with ASD, highlight some features in common with young people with long-term conditions but also the importance of identifying ways to foster underlying skills and the ability of young people with ASD to develop and maintain relationships. Child-focussed and adult-orientated healthcare services need to work directly with autistic individuals and their support networks to facilitate successful engagement with services and enable adults to manage their mental health needs. There is an urgent need to investigate the implementation and effectiveness of research and clinical guideline recommendations that aim to increase wellbeing, health self-efficacy and improve the mental health outcomes for autistic adults.

Background As young people with long-term conditions move from childhood to adulthood, their health may deteriorate and their social participation may reduce. ‘Transition’ is the ‘process’ that addresses the medical, psychosocial and educational needs of young people during this time. ‘Transfer’ is the ‘event’ when medical care moves from children’s to adults’ services. In a typical NHS Trust serving a population of 270,000, approximately 100 young people with long-term conditions requiring secondary care reach the age of 16 years each year. As transition extends over about 7 years, the number in transition at any time is approximately 700. Objectives Purpose – to promote the health and well-being of young people with long-term conditions by generating evidence to enable NHS commissioners and providers to facilitate successful health-care transition. Objectives – (1) to work with young people to determine what is important in their transitional health care, (2) to identify the effective and efficient features of transitional health care and (3) to determine how transitional health care should be commissioned and provided. Design, settings and participants Three work packages addressed each objective. Objective 1. (i) A young people’s advisory group met monthly throughout the programme. (ii) It explored the usefulness of patient-held health information. (iii) A ‘Q-sort’ study examined how young people approached transitional health care. Objective 2. (i) We followed, for 3 years, 374 young people with type 1 diabetes mellitus (150 from five sites in England), autism spectrum disorder (118 from four sites in England) or cerebral palsy (106 from 18 sites in England and Northern Ireland). We assessed whether or not nine proposed beneficial features (PBFs) of transitional health care predicted better outcomes. (ii) We interviewed a subset of 13 young people about their transition. (iii) We undertook a discrete choice experiment and examined the efficiency of illustrative models of transition. Objective 3. (i) We interviewed staff and observed meetings in three trusts to identify the facilitators of and barriers to introducing developmentally appropriate health care (DAH). We developed a toolkit to assist the introduction of DAH. (ii) We undertook a literature review, interviews and site visits to identify the facilitators of and barriers to commissioning transitional health care. (iii) We synthesised learning on ‘what’ and ‘how’ to commission, drawing on meetings with commissioners. Main outcome measures Participation in life situations, mental well-being, satisfaction with services and condition-specific outcomes. Strengths This was a longitudinal study with a large sample; the conditions chosen were representative; non-participation and attrition appeared unlikely to introduce bias; the research on commissioning was novel; and a young person’s group was involved. Limitations There is uncertainty about whether or not the regions and trusts in the longitudinal study were representative; however, we recruited from 27 trusts widely spread over England and Northern Ireland, which varied greatly in the number and variety of the PBFs they offered. The quality of delivery of each PBF was not assessed. Owing to the nature of the data, only exploratory rather than strict economic modelling was undertaken. Results and conclusions (1) Commissioners and providers regarded transition as the responsibility of children’s services. This is inappropriate, given that transition extends to approximately the age of 24 years. Our findings indicate an important role for commissioners of adults’ services to commission transitional health care, in addition to commissioners of children’s services with whom responsibility for transitional health care currently lies. (2) DAH is a crucial aspect of transitional health care. Our findings indicate the importance of health services being commissioned to ensure that providers deliver DAH across all health-care services, and that this will be facilitated by commitment from senior provider and commissioner leaders. (3) Good practice led by enthusiasts rarely generalised to other specialties or to adults’ services. This indicates the importance of NHS Trusts adopting a trust-wide approach to implementation of transitional health care. (4) Adults’ and children’s services were often not joined up. This indicates the importance of adults’ clinicians, children’s clinicians and general practitioners planning transition procedures together. (5) Young people adopted one of four broad interaction styles during transition: ‘laid back’, ‘anxious’, ‘wanting autonomy’ or ‘socially oriented’. Identifying a young person’s style would help personalise communication with them. (6) Three PBFs of transitional health care were significantly associated with better outcomes: ‘parental involvement, suiting parent and young person’, ‘promotion of a young person’s confidence in managing their health’ and ‘meeting the adult team before transfer’. (7) Maximal service uptake would be achieved by services encouraging appropriate parental involvement with young people to make decisions about their care. A service involving ‘appropriate parental involvement’ and ‘promotion of confidence in managing one’s health’ may offer good value for money. Future work How might the programme’s findings be implemented by commissioners and health-care providers? What are the most effective ways for primary health care to assist transition and support young people after transfer? Study registration This study is registered as UKCRN 12201, UKCRN 12980, UKCRN 12731 and UKCRN 15160. Funding The National Institute for Health Research Programme Grants for Applied Research programme.

Background Most evidence about what works in transitional care comes from small studies in single clinical specialties. We tested the hypothesis that exposures to nine recommended features of transitional healthcare were associated with better outcomes for young people with long-term conditions during transition from child-centred to adult-oriented health services. Methods This is a longitudinal, observational cohort study in UK secondary care including 374 young people, aged 14–18.9 years at recruitment, with type 1 diabetes (n = 150), cerebral palsy (n = 106) or autism spectrum disorder with an associated mental health problem (n = 118). All were pre-transfer and without significant learning disability. We approached all young people attending five paediatric diabetes centres, all young people with autism spectrum disorder attending four mental health centres, and randomly selected young people from two population-based cerebral palsy registers. Participants received four home research visits, 1 year apart and 274 participants (73%) completed follow-up. Outcome measures were Warwick Edinburgh Mental Wellbeing Scale, Mind the Gap Scale (satisfaction with services), Rotterdam Transition Profile (Participation) and Autonomy in Appointments. Results Exposure to recommended features was 61% for ‘coordinated team’, 53% for ‘age-banded clinic’, 48% for ‘holistic life-skills training’, 42% for ‘promotion of health self-efficacy’, 40% for ‘meeting the adult team before transfer’, 34% for ‘appropriate parent involvement’ and less than 30% for ‘written transition plan’, ‘key worker’ and ‘transition manager for clinical team’. Three features were strongly associated with improved outcomes. (1) ‘Appropriate parent involvement’, example association with Wellbeing (b = 4.5, 95% CI 2.0–7.0, p = 0.001); (2) ‘Promotion of health self-efficacy’, example association with Satisfaction with Services (b = − 0.5, 95% CI – 0.9 to – 0.2, p = 0.006); (3) ‘Meeting the adult team before transfer’, example associations with Participation (arranging services and aids) (odds ratio 5.2, 95% CI 2.1–12.8, p

Despite the high frequency of anxiety and depression symptoms in individuals with Autism Spectrum Disorder (ASD) and a significant impact of these comorbidities on both individuals with ASD and their families, research on the validity of anxiety and depression measures in the ASD population is currently lacking. The aim of this study was to explore the psychometric properties of the Hospital Anxiety and Depression Scale [HADS; ZigmondSnaith, ] in a sample of older adolescents and young adults with ASD. One hundred and fifty one participants (UK Transition longitudinal study: N = 106; 75 males, MResearch on the validity of measurement of anxiety and depression in ASD is currently lacking. The aim of this study was to explore the properties of the Hospital Anxiety and Depression Scale (HADS) in a sample of 151 young people with ASD. Participants completed HADS and a range of mental health and well-being measures. Encouragingly, our findings suggest that HADS provides a reliable and valid assessment of anxiety and depression in ASD.

background: Sperm banking is recommended for all men diagnosed with cancer where treatment is associated with risk of long-term gonadatoxicity, to offer the opportunity of fatherhood and improved quality of life. However, uptake of sperm banking is lower than expected and little is known about why men refuse. Our aims were to determine: (i) demographic and medical variables associated with decisions about banking and (ii) differences in quality of life between bankers and non-bankers at diagnosis (Time 1 (T1)) and 1 year later (Time 2 (T2)).\ud methods: Questionnaires were completed by 91 men (response rate=86.67%) at T1 and 78 (85.71% response rate) at T2.\ud results: In all, 44 (56.41%) banked sperm. They were younger and less likely to have children than non-bankers. In a subset of men who were not sure if they wanted children in the future (n=36), 24 banked sperm. Among this group, those who banked were younger, more satisfied with clinic appointments and less worried about the health of future children. At T2, there were no differences in quality of life between bankers and non-bankers.\ud conclusion: For those who are uncertain about future reproductive plans, decisions depend on their health on diagnosis and satisfaction with clinic care. We conclude that extra care should be taken in counselling younger men who may have given little consideration to future parenting. Results support previous findings that the role of the doctor is vital in facilitating decisions, especially for those who are undecided about whether they wanted children in the future or not.

Objective: The present research tested whether an evaluative conditioning intervention makes thin-ideal models less enviable as standards for appearance-based social comparisons (Study 1), and increases body satisfaction (Study 2). Design: Female participants were randomly assigned to intervention versus control conditions in both studies (ns = 66 and 39). Intervention participants learned to associate thin-ideal models with synonyms of fake whereas control participants completed an equivalent task that did not involve learning this association. Main outcome measures: The dependent variable in Study 1 was an implicit measure of idealization of slim models assessed via a modified Implicit Association Test (IAT). Study 2 used a validated, self-report measure of body satisfaction as the outcome variable. Results: Intervention participants showed significantly less implicit idealization of slim models on the IAT compared to controls (Study 1). In Study 2, participants who undertook the intervention exhibited an increase in body satisfaction scores whereas no such increase was observed for control participants. Conclusion: The present research indicates that it is possible to overcome the characteristic impact of thin-ideal models on women's judgments of their bodies. An evaluative conditioning intervention made it less likely that slim models were perceived as targets to be emulated, and enhanced body satisfaction.

Study question: What medical and psychological variables predict why men with banked sperm do not return for semen analysis after their cancer treatment has ended? Summary answer: Men who decline the offer of semen analysis are less likely to have reported adverse side effects during cancer treatment, and have a more negative experience of banking sperm and a more negative attitude towards disposal of their stored semen than those who attend. What is known already?: Previous authors have noted that male cancer survivors seem reluctant to have their fertility tested after their treatment has ended. Moreover, the utilization rates of banked sperm are very low (,10%) and the majority of samples are kept for many years without being used. Study design, size and duration: A cross-sectional study of 499 cancer survivors who were sent a questionnaire about their views on sperm banking, fertility and post-treatment semen analysis between April 2008 and December 2010. participants and setting: Men (aged 18–55 years) who had banked sperm in Sheffield and Nottingham (UK) prior to gonadotoxic treatment for cancer more than 5 years previously. Main results and the role of chance: Completed questionnaires were received from 193 men (38.7% response rate) whose samples had been banked for 9.18+3.70 years (range = 4.94–26.21) and whose current age was 35.08+7.08 years (range = 21.58–54.34; mean+SD). One-third (35.8%) had never attended for semen analysis. In multivariate analysis, the odds of not attending for semen analysis were significantly greater among men who did not experience adverse treatment side effects [odds ratio (OR) = 5.72, 95% confidence interval (CI) = 2.10–15.56], who reported a more negative experience of banking sperm (OR = 1.82, 95% CI = 1.17– 2.82) and a more negative attitude to disposal of their stored semen (OR = 1.56, 95% CI ¼ 1.01–2.42). Limitations and reasons for caution: Only 38.7% of those eligible agreed to take part. We do not know the characteristics of men who declined to take part, if they agreed to attend semen analysis without completing the questionnaire or whether they had chosen to have semen analysis performed elsewhere (e.g. private sector). Some of the measures used (e.g. experience of banking sperm) relied on men’s recall of events many years previously. Wider implications of the findings: New strategies are required to encourage these men to engage with fertility monitoring programmes if sperm banks are to be used cost-effectively and men are to be given appropriate fertility advice. Study funding and competing interests: This paper was supported by funding from Cancer Research-UK to C.E., A.A.P. and R.R. (C481/A8141). The views expressed are those of the authors. No competing interests declared.

BACKGROUND: For many young people with long term conditions (LTC), transferring from paediatric to adult health services can be difficult and outcomes are often reported to be poor. We report the characteristics and representativeness of three groups of young people with LTCs as they approach transfer to adult services: those with autism spectrum disorder with additional mental health problems (ASD); cerebral palsy (CP); or diabetes.METHODS: Young people aged 14 years-18 years 11 months with ASD, or those with diabetes were identified from children's services and those with CP from population databases. Questionnaires, completed by the young person and a parent, included the 'Mind the Gap' Scale, the Rotterdam Transition Profile, and the Warwick and Edinburgh Mental Wellbeing Scale.RESULTS: Three hundred seventy four young people joined the study; 118 with ASD, 106 with CP, and 150 with diabetes. Participants had a significant (p CONCLUSIONS: Having established that our sample of young people with one of three LTCs recruited close to transfer to adult services was representative, we have described aspects of their satisfaction with services, participation and wellbeing, noting similarities and differences by LTC. This information about levels of current functioning is important for subsequent evaluation of the impact of service features on the health and wellbeing of young people with LTCs following transfer from child services to adult services.

Current policy in the UK recommends that men bank sperm prior to cancer treatment, but very few return to use it for reproductive purposes or agree to elective disposal even when their fertility recovers and their families are complete. We assessed the demographic, medical and psychological variables that influence the decision to dispose by contacting men (n = 499) who banked sperm more than five years previously, and asked them to complete questionnaires about their views on sperm banking, fertility and disposal. From 193 responses (38.7% response rate), 19 men (9.8%) requested disposal within four months of completing the questionnaire. Compared with men who wanted their sperm to remain in storage, they were significantly more confident that their fertility had recovered (OR = 1.78, 95% CI = 1.05-3.03, p = 0.034), saw fertility monitoring (semen analysis) as less important (OR = 0.61, 95% CI = 0.39-0.94, p = 0.026), held more positive attitudes to disposal (OR = 5.71, 95% CI = 2.89-11.27, p < 0.001), were more likely to have experienced adverse treatment side-effects (OR = 4.37, CI = 1.61-11.85, p = 0.004) and had less desire for children in the future (OR = 0.41, 95% CI = 0.26-0.64, p < 0.001). Information about men's reasons to dispose of banked sperm may be helpful in devising new strategies to encourage men to engage with sperm banking clinics and make timely decisions about the fate of their samples.

Long-term storage of banked sperm, especially when it is not needed, for reproductive purposes, is costly and poses practical problems for sperm banks. For sperm banks to function efficiently, men must understand the implications of unnecessary storage, and make timely decisions about disposal of their own samples. Men who bank sperm prior to cancer treatment are routinely offered follow-up consultations to test their fertility, update consent and, where necessary, expedite referral for Assisted Conception. Yet sperm banks report that men do not respond to letters, suggesting samples are stored needlessly. We conducted semi-structured interviews with six men with a history of not responding to letters, to document reasons for non-response. Interviews were transcribed and analysed using Interpretive Phenomenological Analysis. Men's reasons for not responding are a complex interplay between past, present and future perspectives. In terms of their past, information is important on diagnosis, because men must understand that fertility can change after treatment. Present and future concerns focus on fears of being told fertility has not recovered and being pressured to dispose of banked sperm. The challenge is to devise invitation letters that address men's concerns while offering them tangible benefits and peace of mind.

Sperm banking is routinely offered to men where there is a risk of infertility following cancer treatment but uptake is lower than expected. Since these men may turn to the internet for information, we used the search engine www.google.com to identify the material available about sperm banking and fertility preservation options. Sixty-six resources (NHS/Private Clinic, Charity, Press Releases, General and Forums/Blogs) fulfilled the criteria for inclusion and were examined for quality including readability, layout and content. The most frequently reported information related to: (1) effects of cancer treatment on fertility (77.3%); (2) reasons to bank sperm (69.7%); and (3) fertility recovery after treatment (57.6%). Information about maintaining contact with the sperm bank (18.2%) and disposal of banked samples (10.6%) was less often included. The quality of information available on the Internet about sperm banking was variable. The readability of all resources was assessed as 'fairly difficult', i.e. reading skills required were too complex for the average member of the public to understand. Furthermore, visual presentation of material (e.g. lay out) did not facilitate easy reading. More attention should be given to information about longer-term issues, such as fertility recovery and the use or disposal of banked sperm.

Background: Young people with complex health needs have impairments that can limit their ability to carry out day-to-day activities. As well as coping with other developmental transitions, these young people must negotiate the transfer of their clinical care from child to adult services. The process of transition may not be smooth and both health and social outcomes may suffer. Increasingly, policy-makers have recognised the need to ensure a smoother transition between children's and adult services, with processes that are holistic, individualised, and person-centred; however, there is little outcome data to support proposed models of care. This study aims to identify the features of transitional care that are potentially effective and efficient for young people with complex health needs making their transition.\ud \ud Methods/Design: Longitudinal cohort study. 450 young people aged 14 years to 18 years 11 months (with autism spectrum disorder and an additional mental health problem, cerebral palsy or diabetes) will be followed through their transition from child to adult services and will contribute data at baseline, 12, 24 and 36 months. We will collect data on: health and wellbeing outcomes (participation, quality of life, satisfaction with services, generic health status (EQ-5D-Y) and condition specific measure of disease control or management); exposure to proposed beneficial features of services (such as having a key worker, appropriate involvement of parents); socio-economic characteristics of the sample; use of condition-related health and personal social services; preferences for the characteristics of transitional care. We will use regression techniques to explore how outcomes vary by exposure to service features and by characteristics of the young people. These data will populate a decision-analytic model comparing the costs and benefits of potential alternative ways of organising transition services. In order to better understand mechanisms and aid interpretation, we will undertake qualitative work with 15 young people, including interviews, non-participant observation and diary collection.\ud \ud Discussion: This study will evaluate the effect of service components of transitional care, rather than evaluation of specific models that may be unsustainable or not generalisable. It has been developed in response to numerous national and international calls for such evaluation.