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. Data were analysed through the lens of normalization process theory. RESULTS: Themes were framed within the theory's four components. (1) Coherence: Healthcare professionals' views on their core tasks and on the parents' role influenced their perception of the program. (2) Cognitive participation: A named key worker, autonomy, and collaboration impacted healthcare professionals' involvement in the program. (3) Collective action: Department prioritization and understanding of the program's aim were key factors in its successful delivery. (4) Reflective monitoring: Participants experienced that the program helped parents during transfer but questioned if the program was needed by all families. CONCLUSION: We identified three barriers: Healthcare professionals' lack of understanding of the parental role during transfer, top-down decisions among nurses, and physicians' uncertainty about their role in joint consultations. Facilitators: Healthcare professionals' understanding of the program's purpose and expected effect, the nurses' significant role as named keyworkers, and good collaboration across paediatric and adult departments. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Implementation strategies should be developed before implementing a transfer program in clinical practice. IMPACT: Implementing a parental transfer program in clinical practice can be challenging. Therefore, for successful implementation, it is crucial to identify barriers and facilitators. Barriers and facilitators exist at the personal, professional, and organizational levels, and it is important to understand them. The results of this qualitative study could support the implementation of transfer programs in other settings. REPORTING METHOD: Consolidated criteria for reporting qualitative studies (COREQ). PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. WHAT DOES THIS PAPER CONTRIBUTE TO THE WIDER GLOBAL CLINICAL COMMUNITY?: Nurses' and physicians' experiences of ownership of the transfer program is essential for successful implementation. Clinics should appoint a named keyworker, preferably a nurse, as the driving force during the implementation of a transfer program. Nurses and physicians should receive training about the purpose, justification, and expected effect of a transfer program before implementation.

Development of Quality of Life in Adolescents and Young Adults With Cancer Using a Patient Support Smartphone App: Prepost Interventional Study.

BACKGROUND: Adolescents and young adults often experience existential concerns in addition to side effects during a cancer trajectory, which they often carry alone. Thus, cohesion with other adolescents and young adults with cancer is essential but difficult due to the relatively small, widely dispersed nationwide population. In cocreation, a smartphone app has been developed and includes an information bank, a symptom tracker, and a social community platform, aiming to improve the quality of life (QoL) in this patient group. OBJECTIVE: This nationwide, multicenter study aimed to investigate the QoL in adolescents and young adults undergoing a cancer trajectory as they used the app for 6 weeks. METHODS: Via youth support initiatives, participants were recruited from hospitals in all regions of Denmark. Inclusion criteria were patients with cancer aged 15-29 years who either initiated any cancer treatment or started follow-up after cancer treatment within 30 days. Participants used the adolescents and young adults cancer app for 6 weeks. Before and after the 6 weeks of app use, they completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30). The participants were divided into a treatment and a follow-up group for analysis. A high score for a functional scale or the global health or overall QoL represents a high or healthy level of functioning or high QoL, respectively; however, a high score for a symptom scale or item represents a high level of symptomatology. RESULTS: Overall, 81 participants were recruited. However, 4 participants did not answer the questionnaire and 6 participants did not use the app. In the treatment group (n=36), significant improvement was found in 2 domains: "Role functioning" (baseline median 33.33, IQR 16.67-83.33 vs 6 weeks median 66.67, IQR 33.33-83.33; P=.04) and "Pain" (baseline median 33.33, IQR 16.67-50.00 vs 6 weeks median 16.67, IQR 0.00-33.33; P=.04). The "Global health/Overall QoL" scale remained stable (baseline median 58.33, IQR 45.83-77.08 vs 6 weeks median 62.50, IQR 41.67-75.00; P=.25). In the follow-up group (n=35), significant improvement was found in 3 domains: "Physical functioning" (baseline median 79.23, IQR 73.33-93.33 vs 6 weeks median 82.86, IQR 73.33-100.00; P=.03), "Cognitive functioning" (baseline median 62.38, IQR 50.00-83.33 vs 6 weeks median 69.52, IQR 50.00-100.00; P=.02), and "Social functioning" (baseline median 76.19, IQR 50.00-100.00 vs 6 weeks median 85.71, IQR 83.33-100.00; P=.05), as well as in the "Global health/Overall QoL" scale (baseline median 57.14, IQR 83.33-100.00 vs 6 weeks median 75.0, IQR 62.91-85.73; P<.001). CONCLUSIONS: In this study, we found an improvement in specific QoL scales for both participants in treatment and follow-up when using the app for 6 weeks. The global health or overall QoL score improved significantly in the follow-up group. In the treatment group, it remained stable. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/10098.

Research involvement and engagement of adolescent and young adults in a cancer trajectory: a 5-year experience from a patient support facility at a university hospital.

BACKGROUND: The purpose of this case study is to describe how a vulnerable group of patients can be included in research. The activities, challenges, lessons learned, and reflections on the importance of patient involvement in research for 5 years (2016-2021) at the adolescent and young adult (AYA) cancer support facility, Kræftværket, are reported. MAIN BODY: A patient panel at Kræftværket, the Youth Panel has multiple aims, one of which is the ability to perform patient involvement in research, with the goal of achieving research of high quality. We here describe how Patient and Public involvement (PPI) can be customized to AYAs in a cancer trajectory, who face many challenges, including those in the physical, psychological, and social domains. During 2016-2021, Youth Panel meetings were planned every third month but interrupted during the COVID-19 pandemic. With a flexible structure and a dynamic panel including 10-15 varying AYAs in a cancer trajectory, engagement and involvement have been maintained. Eight research topics were investigated, seven of which were discussed and confirmed to be important by the Youth Panel. Out of eight topics, three were raised by patients, and five by researchers. One was not discussed due to COVID-19. Some of the challenges we have experienced were related to the flexible meeting structure and the differing expectations and priorities as well as the impact of COVID-19. However, we experienced that patient involvement is possible in the field of AYA oncology if a trusting environment is created. A key finding in our case study was, that without a national Danish PPI program and no defined international standard for PPI in AYA cancer research yet, we were able to give patients the possibility to give input to researchers on topics where research is missing. CONCLUSION: Here, we demonstrate how patient involvement in research has been performed at an AYA cancer facility, Kræftværket, during a 5-year period. We encourage others to perform patient-involving research, even in challenging populations. Ideally this must follow international standards for PPI in AYA cancer research when such exist to improve research with crucial insight from patients.

In this paper, we describe patient involvement in research at Kræftværket, a youth support center and social organization for AYAs in a cancer trajectory. The center is located at The University Hospital Rigshospitalet in Copenhagen, Denmark. Youth panel meetings are Kræftværkets' most central patient involvement activity, and one of its aims is to facilitate high-quality patient-initiated research. AYA cancer patients are a vulnerable group facing huge psycho-social challenges and symptoms that make normal functioning difficult. Therefore, the youth panel is designed to be flexible in its structure, so participants do not have to commit themselves as permanent members. The youth panel meets four times a year, and during the period 2016­2021, it has been involved in eight research topics. Challenges include the flexible meeting structure, different expectations, and priorities as well as the impact of COVID-19. However, patient involvement has been possible because of a trusting environment with strong nurse-led support for the participants. We hope to encourage others to argue for and carry out meaningful patient-involving research to improve tomorrow's quality of AYA cancer care.

Symptom Patterns in Young Adults with Cancer: An App-Based Study.

OBJECTIVES: To investigate symptom patterns in young adults with cancer using a smartphone-based app. The authors sought to explore symptom frequency and severity, cluster patients based on their symptom severity, investigate the co-occurrence of severe symptoms, and explore the relationship between symptoms and activities. DATA SOURCES: Data were collected, using a mobile app, from 161 young adults with cancer (mean age 25.5 years, 75% female, 59% with solid cancer). Symptom frequency/severity was investigated with descriptive statistics. K-means clustering technique was used to cluster patients based on the average symptom severity. Co-occurrence of severe symptoms was investigated with the association rule technique. The relationship between symptom severity and likelihood of performing a physical/social activity was explored with mixed-effects logistic regression. CONCLUSION: The most frequently reported symptom was mood disturbance, followed by fatigue, which was also the most severe one. Two clusters of patients were identified, experiencing higher and lower severity for all symptoms. Severe appetite disturbances were frequently reported together with severe lack of energy and nausea. Severe lack of energy, either alone or together with mood disturbance, was often reported together with severe fatigue. Higher mood disturbance was associated with lower probability of performing physical and social activities. This study provides new insights into the symptom experience of young adults with cancer. IMPLICATIONS FOR NURSING PRACTICE: Using a symptoms-tracking app may be a valid strategy for healthcare professionals, nurses, and researchers to support patients in symptom monitoring and, consequently, to identify and implement tailored symptom-management strategies.

Thoughts about fertility among female adolescents and young adults with cancer: a qualitative study.

PURPOSE: Nine hundred female adolescents and young adults (AYAs) aged 15-39 are diagnosed with cancer in Denmark annually. Advances in cancer therapy have led to increased long-term survival; however, a serious side effect of cancer therapy is reduced fertility. The aim of our study was to explore the thoughts about fertility among female AYAs with cancer. METHODS: Our study was conducted from September 2020 to March 2021 at the Copenhagen University Hospital, Rigshospitalet. Inclusion criteria were female AYAs with cancer aged 18-39. Twelve individual, semi-structured, qualitative interviews were performed with female AYAs with cancer (20-35 years). Data were analysed using thematic analysis. RESULTS: Four main themes were found: (1) the female AYAs held on to a hope of having children in the future; (2) the female AYAs experienced time pressure and waiting time as a sprint as well as a marathon; (3) the female AYAs faced existential and ethical choices about survival and family formation; and (4) the female AYAs felt a loss of control of their bodies. CONCLUSION: Our study contributes with knowledge on how important holding on to the hope of children in the future is among female AYAs with cancer. Meanwhile, they are frustrated by the rushed decision on fertility preservation at diagnosis. The female AYAs also have existential and ethical concerns related to the choice of cancer therapy and fertility preservation. Finally, they suffer from altered body image, loss of femininity, and body control due to hormone therapy.

Experiences of Peer Communities in a Cancer Smartphone App Among Adolescents and Young Adults With Cancer.

OBJECTIVES: Adolescents and young adults (AYAs) with cancer have identified connection to online communities of same-age peers to be essential for psycho-social support. In this study, the aim was to explore AYAs with cancers' and AYA cancer survivors' use of the Kræftværket cancer app's social forum and experiences of peer communities in the forum. Differences due to gender and treatment status were investigated. DATA SOURCES: In all, 85 AYAs aged 15-29 were recruited: 46 on and 39 off cancer treatment. The use of the social forum was assessed by a questionnaire, which were analyzed using descriptive statistics, and telephone interviews were analyzed thematically by the Framework Method. CONCLUSION: Some AYAs assessed the social forum to be more valuable at time of diagnosis, while others experienced meaningful peer-support after cancer. Women were more active and diligent users than men. The following themes were found: 1) Common understanding of each other's challenges; 2) Other AYAs' stories increase the feeling of comfort but can also be difficult to accommodate; 3) A temporary and unwanted community; and 4) The interaction is personal but quickly stalls. IMPLICATIONS FOR NURSING PRACTICE: The results are relevant to the development of AYA cancer apps, with a view to strengthening peer-to-peer relationships. Although the use of the Kræftværket app was temporary, it presented a meaningful community for AYAs with cancer. The community feeling reduced loneliness and increased the sense of togetherness. The app met AYAs' needs and wishes for peer-to-peer age-appropriate cancer support, which can be implemented and provided by nurses.

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. The aim of this study was to examine, in relation to parents of chronically ill adolescents: 1) views and experiences regarding their child's transfer from paediatric to adult care, and 2) which initiatives parents preferred in relation to the transfer. The study was based on the interpretive description method, and data were collected through face-to-face or telephone interviews with parents of chronically ill adolescents aged 16-19 (n = 11). We found three overall findings: 'Feeling acknowledged vs. feeling excluded', 'Perceived differences between paediatric and adult care' and 'Feeling safe vs. entering the unknown', together with three preferred initiatives: 1) Joint consultations, 2) Educational events and 3) Online support/website. In general, we found that some parents were extremely worried about the transfer, while others were not. Our results suggest that transfer initiatives targeting parents should focus on knowledge, expectations, relationships and goals in accordance with the social-ecological model of adolescent and young adult readiness to transition (SMART).

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. METHODS: The overall design for this protocol will be a randomized controlled trial. A total of 62 dyads consisting of an adolescent (age 16.5-17.5) and at least one parent will be recruited from one of four pediatric outpatient clinics (nephrology, hepatology, neurology, or rheumatology) at Copenhagen University Hospital - Rigshospitalet, Denmark. The dyads will be randomized to receive the transfer program in addition to usual care or to receive usual care only. The program includes an informative website, bi-annual online educational events, and transfer consultations across pediatric and adult care. Outcome measures will include transition readiness, allocation of responsibility, parental uncertainty level, and transfer satisfaction. Data will be collected from participants at baseline, every 6 months until transfer, at transfer, and 3 months after transfer. The parents' acceptance of and satisfaction with the program will be explored through semi-structured interviews. Cost, barriers, and facilitators affecting future implementation will be identified in interviews with health care professionals, using the Normalization Process Theory as a framework for the process analysis. DISCUSSION: To our knowledge, this transfer program is one of the first interventions for parents of adolescents with a chronic illness during their child's transfer to adult care. Our trial will include parental and adolescent measures allowing us to examine whether a transfer program for parents will improve transfer to adult care for both parents and adolescents. We believe that results from our trial will be helpful in forming recommendations to ensure better involvement of parents in transitional care. TRIAL REGISTRATION: ClinicalTrials.gov NCT04969328 . Retrospectively registered on 20 July 2021.

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. DATA SOURCES: In total, 23 semi-structured interviews were conducted. Participants were young patients with cancer, aged 12-18 years (n = 10) and parents aged 41-53 years (n = 13). Data were analyzed thematically using Malterud's systematic text condensation. CONCLUSION: Three themes were derived: "The Youth-Check Program offers a safe space that led to openness among the young people," "participation in the Youth-Check Program met parents' needs for support for their teenager," and "the Youth-Check Program provided new insights that were not always taken into account." IMPLICATIONS FOR NURSING PRACTICE: The Youth-Check Program is a feasible and useful nurse-led intervention, which can be implemented for the benefit of young people with cancer. However, to strengthen the Youth-Check Program, it is important to define young people's individual needs to make sure they are met according to their specific preferences. Most young people took on more treatment responsibility, and they were empowered to set their own agenda in terms of what kind of support they needed in relation to topics that preoccupied them. The parents were given much needed support for their teenagers.

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. METHODS: The study was based on the UK Medical Research Council's (MRC) framework on developing and testing complex interventions. To increase the program's feasibility and relevance, participatory design was chosen as the overall method. A collaboration group of parents, young people and health care professionals (HCP) were actively involved in the development of the program. The program was developed in three development stages, in accordance with the MRC framework: 1) identifying the evidence base, 2) identifying theory, and 3) modelling process and outcomes. RESULTS: Together with the collaboration group, we developed a comprehensive transfer program targeting parents, by undertaking an iterative process, involving a literature review, individual interviews, workshops and online brainstorms. The program, called ParTNerSTEPs (Parents in Transition - a Nurse-led Support and Transfer Educational Program) comprised three components: 1) an informative website, 2) online educational events for parents, and 3) transfer consultations with providers from both pediatrics and adult care. CONCLUSIONS: The MRC framework was successfully applied to develop a comprehensive transfer program targeting parents of adolescents with chronic ilness. By incorporating the principles of participatory design in the development phase, we ensured that both parents' and adolescents' needs were represented and addressed in the program. TRIAL REGISTRATION: ClinicalTrials.gov ID NCT04969328.

How Do Young Women with Cancer Experience Oncofertility Counselling during Cancer Treatment? A Qualitative, Single Centre Study at a Danish Tertiary Hospital.

BACKGROUND: Adolescents and young adults (AYAs) with cancer are at risk of therapy-induced infertility. The importance of initial and specialized fertility counselling to this patient group is undisputed. Despite international guidelines, oncofertility counselling is still inadequate. The purpose of this study was to examine how female AYA cancer patients and survivors experienced initial and specialized oncofertility counselling, and to present their specific suggestions on how to improve the oncofertility counselling. METHODS: Twelve individual semi-structured interviews were performed with AYAs aged 20-35 with cancer or who were survivors. Participants were recruited via a youth support centre and social organization for AYAs with cancer. Data was analysed using thematic analysis. RESULTS: Three main themes were found: Support is needed for navigating the fertility information jungle; The doctor's approach determines the content of the patient consultation; Inadequate and worrying information causes mistrust and frustration. CONCLUSION: Results indicate a continuing problem regarding insufficient oncofertility counselling to AYAs with cancer. To ensure adequate and uniform information, especially in the initial oncofertility counselling, national guidelines for oncology specialists are suggested including multidisciplinary effort and collaboration between oncology and fertility specialists in mind. In addition, participants suggest focus on communication skills.

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. The AYA participants reflected on their first experiences of the app and whether it was a relevant and useful tool during and after their cancer trajectory. METHODS: A total of 20 AYA cancer patients aged 16-29 years (n = 10 on treatment, n = 10 in follow up) were provided with a prototype of the Kræftværket app during a 6-week test period (April-May 2018). After the test period, n = 17 participated in focus group interviews, which were analyzed thematically. RESULTS: The following themes were found: Sharing personal information (anonymity, safe communication, tough topics, videos and YouTube clips, tracking statistics); Normalcy (Seeing oneself reflected in in others, not alone, general and specific communities); Need for interaction (response from the app, information provided by the app, the app should give more back); and An everyday tool (integrating the app into daily routines, competition between app and Facebook group, temporary needs). CONCLUSIONS: The app was perceived to be most relevant at disease onset. During the treatment period, both diagnosis-specific information and communities were requested. There was a call for a clearer distinction between the purpose of the app and other Facebook communities and for a notification function.

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

Purpose: 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. Methods: Individual semistructured telephone interviews were performed with 13 AYA cancer patients and survivors aged 18-29 years. All participants were users of Kræftværket, a youth support center and social organization for AYAs with cancer at The University Hospital Rigshospitalet, Denmark. Data were analyzed by using thematic analysis. Results: The following themes were found. The need for giving and receiving support, Difficulty of the community spirit, The lockdown's effect on recovery, Disrupted youth, and Being alone. Conclusion: The participants in this study experienced loneliness, anxiety, lack of psychosocial support, and lack of physical contact. In addition, lack of rehabilitation and lack of support during hospital visits, which may specifically influence the disease trajectory, were reported. Thus, health care professionals have an important task to follow up on the AYA's well-being during and after the COVID-19 lockdown. A positive side effect of the lockdown period was the experience of getting a respite to recover physically and mentally after cancer.

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. METHODS: Individual semi-structured interviews were conducted with 12 AYAs with cancer aged 16-29 who had participated in at least one of the service user initiatives in Kræftværket, a youth cancer support centre and social organisation located at Copenhagen University Hospital, Denmark. We analysed data with thematic analysis. RESULTS: We identified three main themes with matching sub-themes: Working procedures (Agenda setting, Workflow, Dialogue), Knowledge sharing (AYAs' needs and ideas, Areas of expertise), Influence (Decisions, Ownership). Generally, the participants experienced an equal dialogue with professionals and felt they had the final say on decisions. CONCLUSIONS: This study produced specific suggestions on how to involve AYAs to a high extent. Based on AYAs' own perceptions of involvement, AYAs', professionals' and shared determination areas were illuminated. Additionally, the AYAs highlighted how the professionals gave feedback during co-creation processes, which may inspire future service user involvement projects.

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. Thus, the app was initiated, created, and evaluated by AYAs with cancer experience. OBJECTIVE: The aim of this study was to explore the results of a think-aloud test administered to see how the prototype of the app Kræftværket was used by AYAs in treatment for cancer and in follow-up, and to investigate the strengths and weaknesses of the app. METHODS: A total of 20 AYA cancer patients aged 16 to 29 years (n=10 on treatment, n=10 in follow-up) were provided with the first version of the co-created mobile phone app Kræftværket during a 6-week test period (April-May 2018). After the test period, 15 participated in individual usability think-aloud tests. The tests were video-recorded, transcribed verbatim, and analyzed using a thematic analysis approach. RESULTS: The thematic analysis led to the following themes and subthemes: navigation (subthemes: intuition, features, buttons, home page, profile), visual and graphic design (subthemes: overview, text and colors, photos, videos, YouTube), and usefulness (subthemes: notifications, posts, adding). The analysis identified gender differences in app utilization-female participants seemed to be more familiar with parts of the app. The app seemed to be more relevant to AYAs receiving treatment due to app functions such as tracking symptoms and searching for relevant information. Lack of notifications and incorrect counting of posts were perceived as barriers to using the app. CONCLUSIONS: Usability testing is crucial to meet the needs of the AYA target audience. AYA cancer apps should preferably be relevant, targeted, and unique, and include a tracking function and AYA-produced videos. Notifications and correct marking and ordering of posts are critical to make apps engaging and dynamic. Further research is recommended to evaluate the Kræftværket app with the input of more AYAs.

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

Purpose: 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. Methods: Individual semistructured interviews were performed with 12 AYAs aged 16-29 who had been or were in current treatment for cancer. Participants were recruited from Kræftværket, a youth support center and social organization for AYAs with cancer, where they had participated in one or more service user involvement initiatives. Data were analyzed by using thematic analysis. Results: The following main themes were found (presented with subthemes in brackets): Achieving professional skills (Strengthening of the Curriculum Vitae, Inspiration for own profession, Handling new working procedures), Being considerate to others (Understanding different perspectives, Altruism), Increasing well-being (Insights into life with cancer, Social community, Giving meaning to life, Everyday life and normalcy). Conclusion: Participating in service user involvement initiatives made the AYAs feel more empowered during their illness course and complied with the personal needs and wishes of AYAs with cancer, including additional support from likeminded individuals. The participants experienced a range of benefits from participating, such as a greater sense of normalcy and increased well-being, allowing for a greater sense of control throughout their illness course.

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. Future research is warranted to determine the effect of mobile health (mHealth) tools such as smartphone apps among the AYA cancer population. OBJECTIVE: The aim of this study was to investigate the feasibility of a smartphone app among AYA patients with cancer in active treatment and posttreatment, in a pilot test by measuring health-related QoL before and after the use of the app. METHODS: Participants were recruited via the youth support initiative and social organization for AYAs with cancer, Kræftværket, based at Rigshospitalet, University Hospital of Copenhagen, Denmark. Participants were evenly distributed in active treatment and posttreatment groups. After written informed consent, all participants were asked to use the app Kræftværket as they deemed appropriate over a 6-week period. The participants were asked to complete the 30-item European Organization for Research and Treatment of Cancer Quality of Life Questionnaire before and after the 6-week period. The collected QoL data were analyzed with t tests to determine differences between groups and from baseline. RESULTS: In total, we enrolled 20 participants, 10 in active treatment and 10 posttreatment (median time after treatment was 4 months) group. Median age of the participants was 25 years. No differences in QoL were seen at baseline (P=.65). The posttreatment group experienced a significant increase in overall QoL after the 6-week period (global QoL: baseline 62.5, SD 22.3; after 6 weeks 80.8, SD 9.7; P=.04). For the group in active treatment, the QoL remained stable throughout the 6 weeks. CONCLUSIONS: This study shows the feasibility and possible effect on QoL associated with the use of an mHealth tool in AYA patients. mHealth support tools are warranted for this population.

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

Purpose: 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. Methods: Data from 12 semistructured interviews with AYA cancer patients and AYA cancer survivors aged 16-29 years were analyzed using thematic analysis. The participants had been involved in one or more service user involvement initiatives in "Kræftværket," a youth support center and social organization for AYAs with cancer in Copenhagen, Denmark. Results: Four main themes with matching subthemes were identified: Community (Being together, Developing together, and In the same boat), Normality (A new normal and Something to do), Contribution (Something at heart, Support to other AYAs, and Improving the health care system), and Codetermination (Real participation and Influence on one's own everyday life). Conclusion: Participating in service user involvement initiatives had a positive impact on the illness course of AYAs with cancer as the participation recreated a feeling of normality, codetermination of one's own everyday life, and met a wish for altruism in terms of helping others.

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. The interviews with the candidates and the subsequent YRC deliberation were observed and recorded, and data were analyzed using thematic analysis. RESULTS: Four main themes with matching sub-themes emerged from the data: (1) Personality (appearance and commitment), (2) Professional skills (approach, mentality and activities), (3) Project management (skills and experience), (4) Communication (during the interview and experiential approach to youth). It was important to the YRC that the candidate had professional experience working with young people as well as being a skilled project manager. The YRC also assessed the candidates´ communication during the interview. CONCLUSIONS: By inviting young people in as a separate recruitment committee, their perspectives and preferences were noted without interference from professionals. Our findings are in line with previous research regarding young peoples´ preferences on youth-friendly health services. Furthermore, this approach made it possible to evaluate candidates´ communication skills with young people as they were assessed during the job interviews.

Youth friendly communication in a transition clinic aimed at adolescents with chronic illness.

Background Good communication skills are considered a cornerstone in a "youth friendly approach". However, research in the field as well as transition guidelines only sparsely explain what doctor-patient communication involves. Furthermore, only few guidelines exist regarding concrete communication skills for health professionals who want to apply a youth friendly communication approach to their practice. Objective To examine how health professionals trained in adolescent medicine practise a youth friendly approach when communicating with adolescents with chronic illness. Methods Data from 10 non-participation observations of transition consultations with adolescents with juvenile idiopathic arthritis (JIA) were analysed using a qualitative positioning analysis approach focusing on the health professionals' reflexive and interactive positionings as well as the décor of the consultation room. Results The health professionals in the transition clinic positioned the adolescent patients as independent interlocutors, children, and adolescents, and they positioned themselves as imperfect/untraditional, appreciative and non-judgmental. The positionings were based on a number of linguistic tools such as affirmation, recognition, examples, asking for the adolescents' own expert knowledge and the décor. The health professionals actively negotiated power. Conclusion Positionings and linguistic tools were inspired by youth friendly tools including the HEADS (Home Education/Eating Activities Drugs Sex/Safety/Self harm) interview, motivational interviewing, and an adolescent medicine practice. A central component was negotiating of power. Limitations of the study include a risk of too positive interpretations of data, i.e. because of the presence of the observer, who could have affected the health professionals' positionings.