Development of a rehabilitation programme for young adult cancer survivors using co-production.

Background: Young adult cancer survivors, defined as individuals aged 18-39 who have completed primary curative treatment, face numerous age-specific biopsychosocial late effects that impact health-related quality of life negatively. Rehabilitation can enhance participation in life roles, work, leisure activities and health-related quality of life. However, there is a lack of age-specific cancer rehabilitation for this population, leaving many young adults with diminished self-efficacy in managing their challenges, resulting in unmet needs.

Introducing patient stories in health sciences education: the learning experiences of students.

Background: It has been advocated that the development of medical school curricula must be informed by students, doctors in training, educators, employers, other health and social care professionals and patients, families and carers. Patients are widely employed to teach clinical and interpersonal skills, and while recognised as crucial in health education, they have mostly been offered a passive role. We assessed the impact of patients contributing personal illness narratives in the master curriculum of allied health care professionals on students' learning experiences.

An auto-ethnographic study of co-produced health research in a patient organisation: unpacking the good, the bad, and the unspoken.

Background: In rare diseases, limited access to services and rare disease experts may force families to act as medical advocates for their child; they can volunteer to support clinician-initiated research or initiate and lead research themselves. Ketotic Hypoglycemia International (KHI) is a new, global organization for families affected by idiopathic ketotic hypoglycemia (IKH) and is run solely by volunteers. Doing research together, families and international experts in a collaborative process such as at KHI, also referred to as patient and public involvement and engagement (PPIE) or extreme citizen science, is often praised for its positive effects on the research and the stakeholders involved.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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).

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.

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.

Young people with attention deficit hyperactivity disorder in transition from child to adult services: a qualitative study of the experiences of general practitioners in the UK.

Background: Many young people with Attention Deficit Hyperactivity Disorder (ADHD) have impairing symptoms that persist into adulthood, yet only a minority experience continuity of care into adult life. Despite growing emphasis on the primary care role in ADHD management in NICE ADHD and transition guidance, little is known about GPs' perspectives, which could hamper efforts to improve outcomes for young people leaving children's services. This study aimed to understand GPs' experiences of involvement with this group and explore their views on the roles and responsibilities of primary and secondary care in transition, to inform recommendations for policy and practice.

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.