MyHospitalVoice - a digital tool co-created with children and adolescents that captures patient-reported experience measures: a study protocol.

Background: Children and adolescents have the right to participate in decisions concerning their health and express their views, also regarding hospital experiences. Patient-reported experience measures (PREMs) are valuable tools for systematically incorporating patient voices into healthcare systems. New developments have focused on PREMs for children and adolescents, though they are more commonly used in adults.

Nurses' and physicians' perspectives on implementation barriers and facilitators in a transfer program for parents of adolescents with chronic illness.

Aim: To identify barriers and facilitators impacting the implementation of a comprehensive transfer program aimed at parents of adolescents with chronic illness in clinical practice.

Design: A real-time, qualitative process evaluation.

Methods: Individual interviews were conducted with 10 nurses and seven physicians from paediatric and adult outpatient clinics: Nephrology, hepatology, neurology, and rheumatology.

Sexuality among young Danes treated for mental health problems: Baseline findings in a nationwide cohort study.

Mental health problems are common among adolescents and young adults (AYA), but although sexuality plays a central role in the transition from adolescence to adulthood, associations between such problems and sexuality have only been sparsely researched in AYA. The aim of this study was to investigate the association between mental health problems and various outcomes related to body and sexuality, romantic relationships, sexual functioning, and sexual risk behaviors among AYA. We used questionnaire data from 8696 Danish AYA aged 15-24 years who participated in the nationwide cohort study Project SEXUS at baseline in 2017-2018.

Low Level of Well-being in Young People With Physical-Mental Multimorbidity: A Population-Based Study.

Purpose: We aimed to examine whether wellbeing, health behavior, and youth life among young people (YP) with co-occurrence of physical-mental conditions, that is, multimorbidity differ from YP with exclusively physical or mental conditions.

Methods: The population included 3,671 YP reported as having a physical or/and mental condition from a Danish nationwide school-based survey (aged 14-26 years). Wellbeing was measured by the five-item World Health Organization Well-Being Index and life satisfaction by the Cantril Ladder.

Sexuality Among Young Danes Treated for Long-Lasting or Severe Physical Disease: Baseline Findings in a Nationwide Cohort Study.

Purpose: Sexual ramifications of physical disease are well-documented in adult populations, but are scarcely investigated among adolescents and young adults (AYA). This study compared measures of sexuality and sexual health among 8,696 15-year-old to 24-year-old Danes with and without a history of treatment for long-lasting or severe physical disease.

Methods: Using baseline data from Project SEXUS, a nationally representative cohort study on sexual health in the Danish population, differences in various domains of sexual behaviors and sexual health between AYA who have and AYA who have not been treated for long-lasting or severe physical disease were investigated.

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Play is a non-invasive, safe, and inexpensive intervention that can help children and adolescents better manage difficult aspects of hospitalisation. Play has existed in hospitals for decades but is emerging as an interdisciplinary scientific field. The field concerns all medical specialties and healthcare professionals working with children.

A comprehensive transfer program from pediatrics to adult care for parents of adolescents with chronic illness (ParTNerSTEPs): study protocol for a randomized controlled trial.

Background: Previous research shows that adolescents with a chronic illness have more successful transfers to adult care if their parents are involved during the transition. However, there is a lack of structured and evaluated transfer programs for parents. Our aim will be to test a comprehensive transfer program for parents of adolescents with chronic illness during the transfer from pediatric to adult care and to evaluate the program's effectiveness, acceptability, and costs.

How Adolescents and Young Adults with Cancer Experience an Age-Appropriate Intervention When Undergoing Treatment in Adult Surgery Clinics: A Qualitative Study.

Despite growing international attention, few interventions specifically target adolescents and young adults (AYAs) with cancer even though appropriate interventions may improve care delivery during cancer treatment. The study's purpose was to explore how AYAs with cancer experience an age-appropriate intervention when undergoing treatment in adult surgery clinics. Twenty AYAs with cancer, aged 18-29 years, from five surgery clinics at Copenhagen University Hospital Rigshospitalet participated in an intervention consisting of three main components: care provided by trained youth coordinator nurses (YCNs) to the greatest extent possible; a 1-hour one-on-one conversation with a YCN during hospitalization; and a postdischarge phone call.

A Qualitative Evaluation of the Youth-Check Program: A Psychosocial Intervention Aimed at Young People with Cancer.

Objectives: In many countries, there is a lack of structured psychosocial health interventions to support young people with cancer. Thus, we developed the nurse-led intervention the Youth-Check Program with the aim of supporting young people with cancer. The aim of the study was to evaluate young patients with cancer and their parents' experiences of the program.

Parents' views on and need for an intervention during their chronically ill child's transfer to adult care.

Parents of chronically ill adolescents play a significant role during their child's transition and transfer to adult care. Parents seek help and support, but appropriate initiatives are still lacking. Thus, there is an urgent call for knowledge regarding parents' needs and views on such support.

Development of a complex intervention to support parents of adolescents with chronic illness transferring from pediatrics to adult care (ParTNerSTEPs).

Background: Transition from pediatric to adult care for adolescents with chronic illness is associated with outpatient non-attendance and low treatment adherence in adolescents, and with anxiety and concerns among parents. Recent studies have shown that parent involvement results in better transitions. The aim of this paper was to describe the development, through participatory design, of a comprehensive transfer program targeted to parents of adolescents with chronic illness.

The Needs and Care Experiences of Adolescents and Young Adults Treated for Cancer in Adult Surgery Clinics: A Qualitative Study.

Adolescents and young adults (AYAs) with cancer hospitalized in adult surgery clinics are an overlooked group of patients. They are a minority hospitalized among elderly surgical patients, and the surroundings and care are designed with older patients in mind. A growing body of research focuses on AYAs' experiences of cancer care.

Adolescents' and young adults' experiences of a prototype cancer smartphone app.

Objective: Smartphone cancer-related apps have been shown to meet some of the needs of adolescents and young adults (AYAs) during their cancer trajectory. However, there is a lack of apps evaluated by AYAs; thus, the quality of many of these apps has been contested. The aim of this study was to investigate the usefulness of a cancer smartphone app called Kræftværket.

Experiences of Social Isolation During the COVID-19 Lockdown Among Adolescents and Young Adult Cancer Patients and Survivors.

COVID-19 is a worldwide pandemic affecting populations by massive lockdowns, including strict precautions and quarantines. Research on the lives of adolescents and young adults (AYAs) with cancer during the COVID-19 pandemic is highly relevant to meet potential challenges regarding their physical and mental well-being. Therefore, the purpose of this study was to investigate how AYA cancer patients and survivors experience social isolation during the COVID-19 lockdown.

A national guideline for youth-friendly health services developed by chronically ill young people and health care professionals - a Delphi study.

Objectives: Significant variation in cultural and socio-economic factors across different countries means that modification of existing guidelines for youth-friendly health services are needed. Furthermore, including the views and perspectives of young people in developing health services add significant value. The aim of this study was to develop a national guideline for youth-friendly health services using the Delphi method.

Experiences of involvement processes during participation in cancer service user initiatives from an adolescent and young adult perspective.

Background: Service user participation contributes to the improvement of health care services for the betterment of conditions experienced by patients. However, there is a lack of knowledge about how adolescents and young adults (AYAs) experience involvement processes in practice and what it would take to achieve a high degree of involvement according to AYAs.

Objectives: To explore: (1) how AYAs with cancer experienced involvement processes during participation in three different service user involvement initiatives (development of an app, development of a book and youth panel meetings), and (2) AYAs' perceptions of determination and collaborative areas between AYAs and professionals.

Usability of a Mobile Phone App Aimed at Adolescents and Young Adults During and After Cancer Treatment: Qualitative Study.

Background: Adolescent and young adult (AYA) cancer patients are seldom involved in the process of testing cancer-related apps. As such, knowledge about youth-specific content, functionalities, and design is sparse. As a part of a co-creation process of developing the mobile phone app Kræftværket, AYAs in treatment for cancer and in follow-up participated in a usability think-aloud test of a prototype of the app.

Impact of Service User Involvement from the Perspective of Adolescents and Young Adults with Cancer Experience.

Knowledge of the impact of participating in service user involvement within a health care setting among adolescents and young adults (AYAs) with cancer is limited, and it is unclear as to what AYAs with cancer gain from their participation. Therefore, the purpose of this study was to investigate the impact of participating in service user involvement initiatives from the perspective of AYA cancer patients and AYA cancer survivors. Individual semistructured interviews were performed with 12 AYAs aged 16-29 who had been or were in current treatment for cancer.

Health-Related Quality of Life Before and After Use of a Smartphone App for Adolescents and Young Adults With Cancer: Pre-Post Interventional Study.

Background: Adolescent and young adult (AYA) patients with cancer are a group with underexplored needs throughout treatment and in survivorship. This missing knowledge can influence their quality of life (QoL). Given this fact, we have developed a smartphone app based on a cocreation process and have an investigation of QoL among users planned as part of pilot testing this app.

Helping Others: Reasons for Participation in Service User Involvement Initiatives from the Perspective of Adolescents and Young Adults with Cancer.

Service user involvement, which implies involvement in decision-making processes important for organizing, developing, and evaluating health care, is sparsely investigated from the perspective of adolescents and young adults (AYAs) with cancer. Thus, the purpose of this qualitative study was to investigate AYAs' reasons for participation in service user involvement initiatives during their cancer course. Data from 12 semistructured interviews with AYA cancer patients and AYA cancer survivors aged 16-29 years were analyzed using thematic analysis.

Parents to chronically ill adolescents have ambivalent views on confidential youth consultations - a mixed methods study.

Background: Confidential youth consultations aiming at enhancing adolescent autonomy are a cornerstone of transitional care. At the same time, parental support is essential. These conflicting considerations result in a clinical dilemma.

Using Cocreation in the Process of Designing a Smartphone App for Adolescents and Young Adults With Cancer: Prototype Development Study.

Background: Adolescent and young adult (AYA) oncology and hematology is a developing field of medicine, focusing on a population that faces many challenges throughout medical treatment and beyond. Mobile health (mHealth) interventions provide exciting new opportunities for improvement of health-related quality of life (HRQoL) in AYAs with cancer. Many smartphone apps are currently available for AYAs with cancer; however, for AYAs with cancer, very few apps have been designed with direct input from AYAs themselves or have demonstrated their effectiveness and benefit.

Developing Age-Appropriate Supportive Facilities, Resources, and Activities for Adolescents and Young Adults with Cancer Across Departments and Diagnoses: A Single-Center Experience.

In 2015, a support initiative for adolescents and young adults with cancer, Kræftværket, was created at Rigshospitalet, Copenhagen University Hospital in Denmark. The primary objective of Kræftværket is to provide youth-friendly support, care, and treatment practices. As Kræftværket provides services to both pediatric and adult departments, a network between patients who would otherwise not interact has been created.

Appointed by young people - a qualitative study on young patients recruiting hospital staff in Denmark.

Background: There is a lack of knowledge about young peoples'wishes for the qualifications including skills and personal traits of hospital staff during the recruitment process.

Objective: The aim of this qualitative study was to explore which qualifications, skills and personal traits young people prefer when recruiting hospital staff.

Methods: A Youth Recruitment Committee (YRC) consisting of four young people performed six job interviews in parallel to conventional job interviews at Copenhagen University Hospital Rigshospitalet, Denmark.

Poor Metabolic Control in Children and Adolescents With Type 1 Diabetes and Psychiatric Comorbidity.

Objective: Type 1 diabetes is associated with an increased risk of psychiatric morbidities. We investigated predictors and diabetes outcomes in a pediatric population with and without psychiatric comorbidities.

Research Design And Methods: Data from the Danish Registry of Childhood and Adolescent Diabetes (DanDiabKids) and National Patient Register were collected (1996-2015) for this population-based study.