Suicidal Thoughts and Behaviors in Parents Caring for Children with Disabilities and Long-Term Illnesses.

OBJECTIVE: There is a growing body of evidence on suicide risk in family carers, but minimal research on parents caring for children with disabilities and long-term illnesses. The aim of this study was to conduct the first dedicated research on suicide risk in parent carers and identify: (1) the number of parent carers experiencing suicidal thoughts and behaviors, and (2) the risk and protective factors for suicidality in this population. METHOD: A cross-sectional survey of parent carers in England (n = 750), co-produced with parent carers. Suicidal thoughts and behaviors were measured with questions from the Adult Psychiatric Morbidity Survey. Frequencies summarized the proportion of carers experiencing suicidal thoughts and behaviors. Logistic regressions identified risk and protective factors. RESULTS: 42% of parents had experienced suicidal thoughts and behaviors while caring for a disabled or chronically ill child. Only half had sought help for these experiences. Depression, entrapment, dysfunctional coping, and having a mental health diagnosis prior to caring, were significant risk factors. CONCLUSION: Parent carers contemplate suicide at levels that exceed those of other family carers and the general public. There is an urgent need, in policy and practice, to recognize parent carers as a priority group for prevention and intervention.

This is the first dedicated study of suicide risk in parent carers.More than 40% of parents had considered suicide while caring for a disabled or chronically ill child.The risk factors for suicidal ideation in parent carers were depression, entrapment, dysfunctional coping strategies, and having a mental health diagnosis prior to becoming a carer.Parent carers may be a high-risk group for suicide and need urgent support.

In the footstep of the old patient from hospital to home: A qualitative field observation study.

BACKGROUND: Older people often have multiple health conditions and therefore extended care needs. The transition from the hospital back to their home requires careful planning. The fragmented healthcare system and rapid discharge from the hospital can result in limited involvement of the older patient in the discharge planning process. We aimed to explore how older hospitalised patients experienced the transition from hospital to home and how possibilities and constraints in interactions with relevant parties in the transition affected their everyday lives. METHOD: An ethnographic participant observation study including interviews was conducted with 10 older hospitalised patients. The theoretical perspective in the study is critical psychology and data were analysed using the condition-, meaning- and reasoning analysis. RESULTS: Three themes were identified: (1) Lost in transition - the person's ability to act is limited, (2) In transition - the relatives become important, (3) At home - the home transforms into a workplace. CONCLUSION: Lack of involvement becomes a condition for older patients as some struggle to create meaning in their transition, affecting their everyday lives. The patients experienced their relatives as important as they ensured that the HCPs got to know their values and wishes. This knowledge is important for HCPs working closely with older people both at the hospital and at home ensuring active involvement of the older person with respect and acknowledgement of the older person's wishes, needs, resources and vulnerability.

Getting to Know Your Patient: Content Analysis of Patients' Answers to a Questionnaire for Promoting Person-Centered Care.

BACKGROUND: Person-centered care (PCC) encourages patients to actively participate in health care, thus facilitating care that fits the life of the patient. Therefore, health care professionals (HCPs) need to know the patient. As part of a broad policy for improving PCC, a digital questionnaire ("We would like to know you") consisting of 5 questions has previously been developed to help HCPs to get to know the patient with the help of patient and staff involvement. OBJECTIVE: The purpose of this study was to provide insight into the content and aims of the questionnaire to understand its potential and usability. METHODS: We conducted a qualitative, retrospective content analysis of patients' answers using NVivo Pro (QSR International). The questionnaire was used in the outpatient neuro-oncology department of a Dutch academic hospital. RESULTS: Of 374 invited patients, 78 (20.9%) completed the questionnaire. We selected a sample of 42 (54%) of the 78 patients. Patients used a median of 16 (IQR 7-27) words per question, and most answers were easily interpretable. When asked about important activities, social activities, sports, or maintaining a normal life were most frequently mentioned. Patients wrote about fear of the disease, its possible influence on life, or fear of the future in general. Patients wanted HCPs to know about their care and communication preferences or shared personal information. They formulated expectations about effective treatment, communication, and the care process. CONCLUSIONS: The questionnaire seems usable because patients provide interpretable answers that take little time to read, which HCPs can use to personalize care. Our study shows the potential of the questionnaire to help deliver PCC.

Wider institutional research cultures and their influence on patient and public involvement and engagement in health research - An institutional ethnography.

Focus on patient and public involvement and engagement (PPIE) is increasing in health policy and research governance. PPIE is considered by some to be a democratic right, and by others to be a way to improve health care and research outcomes and implementation. Most recently, policy makers, funders and (clinical) research institutions are making PPIE a strategic requirement for health research urging researchers to invite patients and relatives into their research activities. Our study is based in a Danish university hospital where PPIE has been introduced as one of five strategic research goals. We investigated how researchers experienced this new practice and how their research practices connect to the wider context of the Danish health care system. Ten cases were studied during a year using observations, interviews, and document analysis. As our method of inquiry, we used institutional ethnography to look at researchers' work from their perspective and to understand how PPIE practices are part of a larger institutional research culture reaching far beyond the individual. We found that current research culture has implications for the selection of patients and relatives and for what they are asked to do. Researchers who experienced that PPIE outcomes aided their existing research practices felt motivated. Researchers who engaged patients and relatives before it was a strategy, were ideologically driven and their approaches resulted in an increased diversity of inclusion and researcher assimilation. These findings add to the current knowledge on PPIE practices and help us understand that further development towards collaborative research practices require a change in key performance indicators and training and perhaps call for attention to our shared acceptance of knowledge generation in research.

Non-participation in a health examination survey in a rural-provincial area of Denmark - results from the Lolland-Falster Health Study (LOFUS).

BACKGROUND: Lolland-Falster Health Study (LOFUS) was a health examination survey that included self-administered questionnaires, clinical examinations, and the collection of biological samples, undertaken in 2016-2020 in a rural, socioeconomically deprived area with the lowest life expectancy in Denmark. The aim of this study was to examine the determinants of non-participation in LOFUS to evaluate the extent to which LOFUS data reflected the general population of the area. METHODS: LOFUS invited randomly selected subjects together with their entire household. As determinants of non-participation, we analyzed age, sex, municipality of residency, citizenship, residency status, socioeconomic status, invitation type, and year of invitation. Relative risk regression was used to estimate the association between determinants and non-participation rate, mutually adjusted for other determinants. RESULTS: In total, 53,313 subjects were invited of whom 18,949 (36%) participated. In the multivariable analysis, men had a 3% higher non-participation rate than women; subjects with citizenship other than Danish had a 3% higher non-participation rate than Danes. In-migrants had 6% higher non-participation than long-term residents. Compared with self-supported subjects aged 30-64, both publicly supported subjects of this age and younger and older subjects had higher non-participation rates: 16%, 16%, and 13%, respectively. Compared with self-supported, long-term residents, publicly supported in-migrants had 23% higher non-participation. CONCLUSIONS: Only about one third of subjects invited to LOFUS participated. Yet, this is a relatively high participation rate compared with other recent health examination surveys in Denmark. Furthermore, there was a relatively flat social gradient in the non-participation rate across the studied determinants.

Roles, outcomes, and enablers within research partnerships: A rapid review of the literature on patient and public involvement and engagement in health research.

BACKGROUND: Recent studies mention a need to investigate partnership roles and dynamics within patient and public involvement and engagement (PPIE) in health research, and how impact and outcomes are achieved. Many labels exist to describe involvement processes, but it is unknown whether the label has implications on partnerships and outcomes. This rapid review investigates how roles between patients, relatives and researchers in a broad variety of PPIE activities in health research are described in peer reviewed papers and explores what enables these partnerships. METHODS: Rapid review of articles published between 2012 and February 2022 describing, evaluating, or reflecting on experiences of PPIE in health research. All research disciplines and research areas were eligible. Four databases (Medline, Embase, PsychInfo and CINAHL) were searched between November 2021 and February 2022. We followed PRISMA guidelines and extracted descriptive factors: year, origin, research area and discipline, study focus, framework used and co-authorship. On a selection of articles, we performed a narrative analysis of partnership roles using Smits et al.'s. Involvement Matrix. Lastly, we performed a meta synthesis of reported enablers and outcomes of the partnerships. Patients and Relatives (PRs) have been involved in the whole rapid review process and are co-authors of this article. RESULTS: Seventy articles from various research disciplines and areas were included. Forty articles were selected for a narrative analysis of the role description of PRs and researchers, and a meta synthesis of enablers and outcomes. Most articles described researchers as decision-makers throughout the research cycle. PRs most often were partners when they were included as co-authors; they were mostly partners in the design, analysis, write-up, and dissemination stages. Enablers of partnerships included: PR training, personality of PRs and communication skills, trust, remuneration and time. CONCLUSIONS: Researchers' decision-making roles gives them control of where and when to include PRs in their projects. Co-authorship is a way of acknowledging patients' contributions which may lead to legitimation of their knowledge and the partnership. Authors describe common enablers, which can help future partnership formation.

This article investigates how other articles describe the roles patients, relatives and researchers have in patient and public involvement activities in health research. It also investigates which factors are supportive of creating these research partnerships. We searched four health research databases and found 70 relevant articles which somehow evaluated patient involvement activities in research. From these 70 articles we chose 40 which we closely investigated for descriptions of roles in the partnerships between researchers and patients and relatives. For this, we used a tool called the Involvement Matrix which uses five different roles: Listener (who is given information), Co-thinker (who is asked to give opinion), Advisor (who gives (un)solicited advice), Partner (who works as an equal partner) and Decision-maker (Who takes initiative and (final) decisions). We found that it is often researchers who take on the role of Decision-maker and that involvement often happens on their terms. We noticed that patients and relatives most often had the role of partner, when they were listed as co-authors of the article. This shows co-authorship as an authorization of their work during patient and public involvement activities. We found that patient and relative training, patients' and relatives' personality and communication skills, trust, financial reimbursement, and time were mentioned most often as enablers of good research partnerships.

Educational experiences of young people with ADHD in the UK: Secondary analysis of qualitative data from the CATCh-uS mixed-methods study.

BACKGROUND: Attention deficit/hyperactivity disorder (ADHD) is a neurodevelopmental disorder characterized by inattention, hyperactivity and/or impulsivity. Young people with ADHD have poorer educational and social outcomes than their peers. We aimed to better understand educational experiences of young people with ADHD in the UK, and make actionable recommendations for schools. METHODS: In this secondary analysis of qualitative data, we used Thematic Analysis to analyse information relating to experiences of education from 64 young people with ADHD and 28 parents who participated in the Children and adolescents with ADHD in Transition between Children's services and adult Services (CATCh-uS) study. Emerging patterns within and across codes led to organization of the data into themes and subthemes through an iterative process. RESULTS: Two main themes were generated. The first described young people's early experiences of education, often within a mainstream setting; we labelled this the problematic provision loop, as this was a negative cycle that was repeated several times for some participants. The second theme described young people's more positive progression through education once they progressed out of the problematic loop. CONCLUSIONS: Educational experiences for young people with ADHD are often negative and fraught with complication. Young people with ADHD often found themselves on a more positive trajectory after they were placed in an alternative form of education provision (mainstream or otherwise), or where they were able to study topics that interest them and play to their strengths. We make recommendations that commissioners, local authorities and schools could consider in order to better support those with ADHD.

Mothers' Views on the Storage and Usage of Their Children's Biological Material Under the Danish Biobanking Model: A Narrative Approach Using Epistemic Injustice.

OBJECTIVES: To investigate the knowledge and attitudes of mothers living in Denmark on the storage and usage of their children's biological material. The Danish Neonatal Screening Biobank contains blood from the Phenylketonuria-screening test. Legal, ethical, and moral concerns have been raised in several countries of how consent is obtained best in pediatric biobank governance. Research on knowledge and attitudes of Danish parents on the usage of their children's biological material is scarce. METHODS: A coproduced study between a mother and 2 researchers. We analyzed 5 online focus group interviews using Ricoeur's hermeneutical narrative analysis. RESULTS: Mothers have very little knowledge on the storage and usage of their children's biological material. They consider the Phenylketonuria-screening test to be part of a birth package, which leaves very little option of choice. They accept donating the material as a token of appreciation in an act of altruism toward the wider society but are only comfortable supporting Danish research. CONCLUSIONS: An exploration of the communal narrative build in the interviews reveal an overall feeling of duty to help benefit society, an overwhelming trust toward the health system, and epistemic unjust storage information practices.

Patient and public involvement and engagement (PPIE) in healthcare education and thesis work: the first step towards PPIE knowledgeable healthcare professionals.

In this Communication article, we share experiences of collaborating with members of the public during health education. We aim to inspire bachelor, masters and PhD students to engage with patients and the public during their undergraduate, graduate and postgraduate thesis work and to inspire educators to collaborate with patient and public involvement/engagement to develop and deliver teaching and offer their students opportunities to engage with patients and the public. We argue that when patients and the public are included in educational projects, such engagement will be an easier task once students graduate. We argue that including patients and the public in educational project work and encouraging reflections with a person with lived experience benefits students in terms of understanding the importance of reflection and validation, setting positive precedence for their future careers.

Parenting roles for young people with attention-deficit/hyperactivity disorder transitioning to adult services.

AIM: To inform transitions from child to adult health services, we explored the work and roles parents take in the care of young people with attention-deficit/hyperactivity disorder (ADHD) aged 14 to 25 years old. METHOD: Using framework thematic analysis, we analysed data collected from 28 semi-structured interviews with parents of young people with ADHD to generate a typology and triangulated it against findings from 64 interviews with young people with ADHD. The interviews were carried out as part of a three-strand, interactive mixed-method study. RESULTS: An entourage typology of three parent roles was identified. Parents moved between 'manager' and 'roadie' roles as their child gradually matured. A 'superfan' role was identified which supported young people's positive self-image but may impede withdrawal from the 'manager' role. Continued parental involvement into adulthood reflected a need to maintain the balance of resources required to maintain quality of life for the whole family. INTERPRETATION: This is the first study to explore parental roles in the health care of young people with ADHD. Parents will vary in their capacity to fulfil the identified roles and step back their care as their children reach adulthood. The findings can inform intervention development to support families and transition between services. WHAT THIS PAPER ADDS: Parents move from a 'manager' to 'roadie' role as young people mature. A 'superfan' role supports positive self-image and directed health care work. Continued involvement reflects parental responsibility to juggle wider family needs and resources. Parents differ in capacity to fulfil and move between these roles.

In transition with attention deficit hyperactivity disorder (ADHD): children's services clinicians' perspectives on the role of information in healthcare transitions for young people with ADHD.

BACKGROUND: National clinical guidelines emphasise the need for good communication of information by clinicians to young people and their parent/carers about what to expect during transition into adult services. Recent research indicates that of young people in need of transition for attention deficit hyperactivity disorder (ADHD), only a minority experience continuity of care into adulthood, with additional concerns about quality of transition. This qualitative analysis explored the role that information plays in the transition from child to adult mental health services for young people with ADHD, from the perspectives of clinicians working in children's services. METHODS: Participants were recruited from National Health Service (NHS) Trusts located across the United Kingdom (UK), with varying service configurations. Twenty-two qualitative interviews were conducted with 15 paediatricians and seven psychiatrists working in child services and supporting young people with ADHD. The Framework Method was used to complete a thematic analysis of data related to the role of information in transitional care. RESULTS: Two themes were identified in relation to the role of information in supporting transition and promoting continuity of care. Information for clinicians; about adult mental health services, the young person and their ADHD, and exchanged between services. Sharing information with young people; about transition processes, self-management, to support service engagement, and tailored to be accessible to young people with ADHD. Clinicians in children's services reported variable access to information. Clear protocols and being able to communicate about ADHD as a long-term condition, were described as having a positive impact on the transition process. CONCLUSIONS: These findings illustrate that clear information on the transition process, and communication of evidence based and up-to-date information on ADHD as a long-term condition are essential components for clinicians supporting transition into adult services. Information exchange can be supported through transition discussions with young people, and joint meetings between services Discussions should be accompanied by accessible resources for young people and parents/carers such as leaflets and websites. Further efforts should be focussed on enabling clinicians to provide timely and appropriate information to young people with ADHD to support transition.

Why young people stop taking their attention deficit hyperactivity disorder medication: A thematic analysis of interviews with young people.

BACKGROUND: Attention deficit hyperactivity disorder (ADHD) is a common neurodevelopmental disorder that can persist into adulthood. Young people often stop taking ADHD medication during adolescence despite evidence that continuation would be beneficial. Increasingly, young people are restarting medication in early adulthood suggesting that cessation was premature. In this paper we explore the reasons given by young people for discontinuing ADHD medication. METHODS: Qualitative data from the Children and Adolescents with ADHD in Transition between Children's and Adult Services (CATCh-uS) project was analysed to look for reasons for stopping medication. Semi-structured interviews with three groups of young people were analysed using thematic and framework analysis; this included young people prior to transition (n = 21); young people that had successfully transitioned to adult services (n = 22); and young people who left children's services prior to transition but re-entered adult services later (n = 21). RESULTS: Reasons given by young people for stopping ADHD medication included the following: the perceived balance between benefits and adverse effects of medication; perceptions of ADHD as a childhood or educational disorder; life circumstance of the young person and challenges young people faced in accessing services. CONCLUSIONS: A multidimensional approach is needed to address discontinuation of ADHD medication in order to improve the long-term prospects and quality of life for these young people. Possible approaches include access to non-pharmacological treatments and improved psychoeducation. As many reasons given by young people are not unique to ADHD, these findings are also of relevance to medication adherence in other chronic childhood conditions.

Suicidality in family caregivers of people with long-term illnesses and disabilities: A scoping review.

An emerging body of international research suggests family caregivers may be a high-risk group for suicide, but the evidence has not been synthesised. Forty-eight peer-reviewed journal articles were included in this review, spanning low-, middle-, and high-income countries and a variety of illnesses and disabilities. The proportion of caregivers experiencing suicidal ideation ranged from 2.7% to 71%, with evidence of suicide attempts, deaths by suicide, and deaths by homicide-suicide also reported. Risk and protective factors varied across studies and there was little consideration of differences by caregiving relationship, type of illness/disability, or country. There is sufficient evidence to warrant concern for caregivers around the world and prompt action in policy and practice, but more rigorous research is required to draw clear, nuanced conclusions about risk and inform evidence-based prevention and intervention.

Adverse events as transitional markers - Using liminality to understand experiences of second victims.

Healthcare professionals are socialized into a tacit, professional identity of competences and skills - to save lives, repair trauma and facilitate good and trustful relational care. When severe adverse events happen, healthcare professionals may struggle to accept their own fallibility, and the event may pose a threat to the selfdeclared 'superior' or 'infallible' professional identity. The consequences of a sudden identity shift between the 'potentially infallible HCP' and 'potentially fallible HC P' caused by an adverse event is the analytical object of this study. The aim of the paper is to derive new understandings of how HCPs in maternity services experience adverse events by using Arnold van Gennep's and Victor Turner's 'rites of passage' theorizations and the concept of liminality to explain the process of transition between the two professional identities. Through five focus groups conducted in June 2018 with midwives and obstetricians-gynecologists, we have examined i) how second victim experiences can be understood using theories of transition and liminality, and ii) how the organizational procedures in a Danish university hospital may serve as a ritual for the involved HCPs in the aftermath of adverse events. The findings suggest that the inconsistency in the level of support contributes to the chaos that may be experienced by the healthcare professional. The organizational structure does not provide rites of transition or any other ritual processes, except for debriefings that, in many cases, are experienced as deficient. Since liminal states suggest danger and threat, because the previous professional identity is replaced by ambiguity and separation, the lack of clear rituals and support may put further strain on the HCP adding to the associated psychological and social distress. Considering the liminality and the need for structured transition rites within the work environment may prove useful when constructing adequate second victim support programs.

Attainment, attendance, and school difficulties in UK primary schoolchildren with probable ADHD.

BACKGROUND: Among children aged 6-16, there is a clear association between attention-deficit/hyperactivity disorder (ADHD) symptoms and academic attainment. We wanted to know whether this association was replicated in younger children. AIMS: To explore the relationship between children aged 4-8 with probable ADHD and their academic attainment and school attendance. Secondly, the study aimed to explore their behaviour within school and their reported attitudes towards school. SAMPLE: A total of 1,152 children who were taking part in the Supporting Teachers and Children in Schools (STARS) cluster randomized controlled trial. METHODS: ADHD status was established by using the Strengths and Difficulties Questionnaire predictive algorithm to identify children with probable ADHD. Using baseline data, random-effects regression models on ADHD status were fitted to attainment, attendance, special educational needs (SEN) provision, and attitudes towards school and classroom behaviour; models that were also fitted to attainment were evaluated again at 9, 18, and 30 months after baseline. RESULTS: Children with probable ADHD (n = 47) were more likely than controls (n = 1,105) to have below-expected attainment in literacy (odds ratio (OR) 16.7, 95% CI 6.93-to-40.1), numeracy (OR 11.3, 95% CI 5.34-to-24.1) and to be identified as having SEN (OR-55.2, 95%-CI 22.1-to-137). Their attendance was poorer with more unauthorized absences (rate ratio (RR)-1.91, 95%-CI-1.57-to-2.31). They had more teacher-reported behavioural problems (mean difference (MD) 5.0, 95%-CI 4.6-to-5.4) and less positive attitudes towards school (MD -1.1, 95% CI -0.56 to -1.85). Poorer attainment in literacy and numeracy persisted at all follow-ups. CONCLUSIONS: Children aged as young as 4 whose behaviour indicates probable ADHD struggle to cope at school in terms of academic attainment, attendance, classroom behaviour, and attitude towards school when compared to other children. Early identification and intervention to help these children manage in school are needed.

Mapping UK mental health services for adults with attention-deficit/hyperactivity disorder: national survey with comparison of reporting between three stakeholder groups.

BACKGROUND: UK clinical guidelines recommend treatment of attention-deficit hyperactivity disorder (ADHD) in adults by suitably qualified clinical teams. However, young people with ADHD attempting the transition from children's to adults' services experience considerable difficulties in accessing care. AIMS: To map the mental health services in the UK for adults who have ADHD and compare the reports of key stakeholders (people with ADHD and their carers, health workers, service commissioners). METHOD: A survey about the existence and extent of service provision for adults with ADHD was distributed online and via national organisations (e.g. Royal College of Psychiatrists, the ADHD Foundation). Freedom of information requests were sent to commissioners. Descriptive analysis was used to compare reports from the different stakeholders. RESULTS: A total of 294 unique services were identified by 2686 respondents. Of these, 44 (15%) were dedicated adult ADHD services and 99 (34%) were generic adult mental health services. Only 12 dedicated services (27%) provided the full range of treatments recommended by the National Institute for Health and Care Excellence. Only half of the dedicated services (55%) and a minority of other services (7%) were reported by all stakeholder groups (P < 0.001, Fisher's exact test). CONCLUSIONS: There is geographical variation in the provision of NHS services for adults with ADHD across the UK, as well as limited availability of treatments in the available services. Differences between stakeholder reports raise questions about equitable access. With increasing numbers of young people with ADHD graduating from children's services, developing evidence-based accessible models of care for adults with ADHD remains an urgent policy and commissioning priority.

Regional analysis of UK primary care prescribing and adult service referrals for young people with attention-deficit hyperactivity disorder.

BACKGROUND: Approximately 20% of children with attention-deficit hyperactivity disorder (ADHD) experience clinical levels of impairment into adulthood. In the UK, there is a sharp reduction in ADHD drug prescribing over the period of transition from child to adult services, which is higher than expected given estimates of ADHD persistence, and may be linked to difficulties in accessing adult services. Little is currently known about geographical variations in prescribing and how this may relate to service access. AIMS: To analyse geographic variations in primary care prescribing of ADHD medications over the transition period (age 16-19 years) and adult mental health service (AMHS) referrals, and illustrate their relationship with UK adult ADHD service locations. METHOD: Using a Clinical Practice Research Datalink cohort of people with an ADHD diagnosis aged 10-20 in 2005 (study period 2005-2013; n = 9390, 99% diagnosed <18 years), regional data on ADHD prescribing over the transition period and AMHS referrals, were mapped against adult ADHD services identified in a linked mapping study. RESULTS: Differences were found by region in the mean age at cessation of ADHD prescribing, range 15.8-17.4 years (P<0.001), as well as in referral rates to AMHSs, range 4-21% (P<0.001). There was no obvious relationship between service provision and prescribing variation. CONCLUSIONS: Clear regional differences were found in primary care prescribing over the transition period and in referrals to AMHSs. Taken together with service mapping, this suggests inequitable provision and is important information for those who commission and deliver services for adults with ADHD.

Transition between child and adult services for young people with attention-deficit hyperactivity disorder (ADHD): findings from a British national surveillance study.

BACKGROUND: Optimal transition from child to adult services involves continuity, joint care, planning meetings and information transfer; commissioners and service providers therefore need data on how many people require that service. Although attention-deficit hyperactivity disorder (ADHD) frequently persists into adulthood, evidence is limited on these transitions. AIMS: To estimate the national incidence of young people taking medication for ADHD that require and complete transition, and to describe the proportion that experienced optimal transition. METHOD: Surveillance over 12 months using the British Paediatric Surveillance Unit and Child and Adolescent Psychiatry Surveillance System, including baseline notification and follow-up questionnaires. RESULTS: Questionnaire response was 79% at baseline and 82% at follow-up. For those aged 17-19, incident rate (range adjusted for non-response) of transition need was 202-511 per 100 000 people aged 17-19 per year, with successful transition of 38-96 per 100 000 people aged 17-19 per year. Eligible young people with ADHD were mostly male (77%) with a comorbid condition (62%). Half were referred to specialist adult ADHD and 25% to general adult mental health services; 64% had referral accepted but only 22% attended a first appointment. Only 6% met optimal transition criteria. CONCLUSIONS: As inclusion criteria required participants to be on medication, these estimates represent the lower limit of the transition need. Two critical points were apparent: referral acceptance and first appointment attendance. The low rate of successful transition and limited guideline adherence indicates significant need for commissioners and service providers to improve service transition experiences.

Clinician perspectives on the use of National Institute for Health and Care Excellence guidelines for the process of transition in Attention Deficit Hyperactivity Disorder.

BACKGROUND: The UK National Institute for Health and Care Excellence (NICE) clinical guidelines recommends the following steps in the transition from child to adult services for young people with attention deficit hyperactivity disorder (ADHD): reassessment before and after transition, transition planning, formal meeting between services, and involvement from young person and carer, completed by age 18. METHODS: A UK surveillance study asked clinicians to report young people on their caseloads with ADHD in need of transition to adult services in 2016 to support their continued access to medication need. Clinicians reported young people as they aged to within 6 months of the transition boundary, a prospective questionnaire prior to transition asked about intended transition and the use of local transition protocols. A retrospective questionnaire sent 9 months later established which steps recommended by NICE were followed during transition. Clinicians (38) working in child or adult services were interviewed about their experiences of transition and the use of NICE guidelines during transition and were analysed using a framework approach. RESULTS: Information was shared between services in 85% of the 315 identified transition cases. A joint meeting was planned in 16% of cases; joint working before transfer occurred in 10% of cases. Clinicians were aware of NICE guidelines; they had mixed views on whether (local) guidelines or protocols were helpful. The main reason for not following guidelines was workload and resources: "NICE recommends stuff that is miles above what we will ever be able to provide". CONCLUSIONS: Clinicians involved in the transition process of young people with ADHD judged NICE guidelines to be unrealistic given the current limited resources and service organization. More open dialogue is needed for recommendations on service models to bridge the gap between guideline recommendations and what is viewed as feasible and how implementation of guidance is funded, monitored, and prioritized. This may lead to valuable changes in the consultation process, for example, consideration of a layered (gold, standard, and minimal) system for some NICE guidelines.

In transition with ADHD: the role of information, in facilitating or impeding young people's transition into adult services.

BACKGROUND: Many national and regional clinical guidelines emphasise the need for good communication of information to young people and their parent/carers about what to expect during transition into adult services. Recent research indicates only a minority of young people in need of transition for Attention Deficit Hyperactivity Disorder (ADHD) experience continuity of care into adulthood, with additional concerns about quality of transition. This qualitative study explored the role that information plays in experiences of transition from the perspectives of parent/carers and young people. METHODS: Participants were recruited from 10 National Health Service Trusts, located across England, with varying service configurations. Ninety two qualitative interviews were conducted: 64 with young people with ADHD at different stages relative to transition, and 28 with parent/carers. Thematic analysis of data was completed using the Framework Method. RESULTS: Interviewees reported a range of experiences; however reliance on parent/carers to gather and translate key information, and negative experiences associated with poor communication of information, were universal. Three themes emerged: Navigating information with help from parents; Information on ADHD into adulthood; Information about the transition process. The first revealed the essential role of parent in the translation and application of information, the other two explored distinct types of information necessary for a smooth transition. Interviewees made recommendations for clinical practice similar to UK (United Kingdom) National Institute for Health and Care Excellence (NICE) guidelines, with an additional emphasis on providing nuanced information on ADHD as a potentially long term condition. It was important to interviewees that General Practitioners had a basic understanding of adult ADHD and also had access to information about service provision. CONCLUSIONS: Our findings illustrate that the availability and communication of information to young people and their parent/carers is an essential component of the transition process between child and adult ADHD services. How and when it is provided may support or impede transition. This study constitutes a substantial contribution to the evidence base, drawing on interviews from a range of participants across England and from Trusts offering different types of services.