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. Logistic regression analyses yielded demographically weighted age-adjusted odds ratios (ORs) for associations between physical diseases and sexual outcomes. RESULTS: AYA treated for long-lasting or severe physical disease resembled their healthy peers on fundamental aspects of sexual interest, activity and satisfaction. However, significantly increased odds ratios of various sexual difficulties and dysfunctions, early sexual debut, high sex partner numbers, discontentment with body or genital appearance, gender nonconformity, nonheterosexuality, and exposure to sexual assaults were observed, overall or within specific disease categories. DISCUSSION: The overall similarity in sexual profiles between AYA treated for physical disease and healthy peers indicates that clinicians should routinely address questions related to sexuality and relationships when encountering AYA with chronic health conditions. Moreover, the observed excess of certain adversities, including sexual assaults, among physically ill AYA highlights the need for preventive measures and counseling services specifically targeted at AYA afflicted by physical disease.

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).

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

Purpose: 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. Methods: 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. Semistructured interviews were used to collect data, which were analyzed in a stepwise process based on inductive content analysis. Results: Three themes were identified: a beacon in the dark; from patient to person; and the caring check-up. Participants felt safe and experienced a sense of presence and a caring environment in a significant and trusting relationship with YCNs, which encouraged them to share thoughts, feelings, and needs they previously had kept silent about. The one-on-one conversations helped them begin reflecting and in emotional processing and the postdischarge phone call was perceived as a caring check-up. Conclusions: The study shows how an age-appropriate intervention was experienced overall as meaningful for the participants hospitalized in adult surgery clinics, but more research is required to further examine the significance and effect of interventions that target AYAs with cancer.

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.

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. METHODS: We invited young people with chronic conditions, managers of paediatric, psychiatric and relevant adult departments and health care professionals with experience and interest in adolescent medicine to participate. The initial list of elements was constructed based on international guidelines and systematic reviews. The study consisted of three electronic questionnaire rounds assessing relevance, importance and whether the elements were essential/very important, respectively. We used 70% agreement as cut-off. RESULTS: More than 70% of participants agreed that only one element was essential: 'Young people should be actively involved in decisions about their treatment and encouraged and supported to ask questions about their illness and treatment'. Additionally, 18 elements reached more than 70% agreement, when the 'essential' was combined with the 'very important' category. We grouped these 19 elements into five themes: 1) staff competences and workflow, 2) developmentally appropriate communication, 3) focus on youth life, including mental health 4) youth participation and shared decisions, and 5) autonomy and transitional care. CONCLUSION: This guideline for a youth-friendly health care system may serve as inspiration for concrete changes, both locally and internationally, as it was developed together by young people, staff, and management.

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

Purpose: 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. However, studies exploring care experiences in terms of in-patient surgery treatment are still needed. Hence, the purpose of the study was to explore the needs and care experiences of AYAs, 15-29 years of age, treated for cancer in adult surgery clinics. Methods: This qualitative study was based on semistructured interviews with 15 AYAs with cancer from seven surgery clinics at Rigshospitalet, Copenhagen University Hospital, Denmark. Data were analyzed and interpreted using inductive content analysis. The Danish Data Protection Agency approved the study (project no.: 05617). Results: Three themes were identified: (1) being the black sheep - experiences of being young in an adult environment, (2) the significant nurse - experiences of the essential relationship between AYAs and the nurses, and (3) the wounded body - experiences of how the physically changed body affects the mind. Conclusions: Our findings showed that the psychosocial needs of AYAs with cancer hospitalized in adult surgery clinics were not being adequately met. Initiatives are needed to improve the psychological and social well-being of this vulnerable patient group, while hospitalized for treatment in surgery clinics.

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.

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.

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. OBJECTIVE: The aim of this study was to examine the attitudes of parents to chronically ill adolescents regarding confidential youth consultations and to explore the underlying reasons. METHODS: A sequential explanatory mixed methods design consisting of a cross-sectional questionnaire survey (n = 117) and three focus group interviews among parents (n = 12) to chronically ill adolescents (12-19 years) was used. Quantitative data were analyzed descriptively. Qualitative data were analyzed using King's template method. RESULTS: The parents preferred independent youth consultations starting around the age of 14-15 years. Around 60% of the parents had one or more concerns regarding independent youth consultations. Although 64% of the parents supported conditional or full confidentiality during adolescence, 95% wanted information even though their child did not consent. In the qualitative analysis, the parents described caring for a child with chronic disease as a term of life perceiving themselves as an "octopus" with numerous roles related to daily care and treatment and at the same time with thoughts and worries regarding the future. We found four themes: 'a life with chronic disease', 'responsibility', 'protection' and 'apprenticeship'. The parents' attitudes were influenced by their roles and their perception of the adolescent's competences as well as their experience with the healthcare system. CONCLUSIONS: Our findings suggest that parents need transitional care too.

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. We used Kaplan-Meier plots to investigate whether age at type 1 diabetes onset and average glycated hemoglobin (HbA1c) levels during the first 2 years after onset of type 1 diabetes (excluding HbA1c at debut) were associated with the risk of being diagnosed with a psychiatric disorder. Mixed-effects linear and logistic regression models were used to analyze HbA1c, BMI, severe hypoglycemia (SH), or ketoacidosis as outcomes, with psychiatric comorbidities as explanatory factor. RESULTS: Among 4,725 children and adolescents with type 1 diabetes identified in both registers, 1,035 were diagnosed with at least one psychiatric disorder. High average HbA1c levels during the first 2 years predicted higher risk of psychiatric diagnoses. Patients with psychiatric comorbidity had higher HbA1c levels (0.22% [95% CI 0.15; 0.29]; 2.40 mmol/mol [1.62; 3.18]; P < 0.001) and an increased risk of hospitalization with diabetic ketoacidosis (1.80 [1.18; 2.76]; P = 0.006). We found no associations with BMI or SH. CONCLUSIONS: High average HbA1c levels during the first 2 years after onset of type 1 diabetes might indicate later psychiatric comorbidities. Psychiatric comorbidity in children and adolescents with type 1 diabetes increases the risk of poor metabolic outcomes. Early focus on the disease burden might improve outcomes.

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.

Sexual and romantic challenges among young Danes diagnosed with cancer: Results from a cross-sectional nationwide questionnaire study.

OBJECTIVE: The negative impact of malignant disease on sexual and relational functioning is well documented among adults but scarcely investigated among adolescents and young adults. This study explored the body image, self-perceived attractiveness, and sexual/romantic experiences of Danes diagnosed with cancer at the age of 15 to 29 years. It also aimed to clarify whether self-perceived needs for counseling were in fact met by health care providers. METHODS: All Danes who had been diagnosed with cancer at the age of 15 to 29 years during the period 2009 to 2013 were included in a cross-sectional nationwide questionnaire study. Eight hundred twenty-two questionnaires were returned, yielding a response rate of 45%. RESULTS: More than half of the respondents (53.8%) reported that cancer had altered their body image negatively, while 44.6% felt that disease had lowered their feeling of being attractive. Nearly one-third (31.3%) and one-fourth (23.6%), respectively, had experienced a negative impact on their desire to have sex or to flirt/date/have a partner. Female responders were more affected than males on most variables, and breast cancer patients were approximately 4 times more at risk for sexual and romantic adversities than patients with melanoma of the skin. Although more than 80% indicated a need to discuss issues of sexuality and intimacy with a health professional, 49.5% and 61.7%, respectively, had talked little or not at all with professionals during hospitalization and follow-up consultations. CONCLUSIONS: Young cancer patients experience sexual and romantic challenges along with a lack of self-perceived attractiveness. Their substantial need for dialogue and counselling should be met in health care settings.

Increasing risk of psychiatric morbidity after childhood onset type 1 diabetes: a population-based cohort study.

AIMS/HYPOTHESIS: The aim of this study was to investigate psychiatric morbidity following childhood onset of type 1 diabetes. METHODS: In a matched, population-based cohort study based on Danish national registers, we identified children and adolescents who had been diagnosed as an in- or outpatient with type 1 diabetes before the age of 18, and afterwards diagnosed with a psychiatric disorder (n = 5084). Control individuals were matched according to sex and date of birth (n = 35,588). The Cox proportional hazards model was used to assess associations between type 1 diabetes and the incidence of psychiatric disorders as well as the effects of age at onset and duration of type 1 diabetes on the risk of subsequently developing psychiatric morbidities. RESULTS: An increased risk of being diagnosed with mood disorders and anxiety, dissociative, eating, stress-related and somatoform disorders was observed in both sexes in the years following type 1 diabetes onset, with the highest risk observed five years or more after onset (HR 1.55 [95% CI 1.38, 1.74]). The risk of psychoactive substance-misuse disorders increased significantly only in boys, and the risk of personality disorders increased only in girls. CONCLUSIONS/INTERPRETATION: In the years following type 1 diabetes onset, an increased risk of eating disorders, anxiety and mood disorders, substance misuse, and personality disorders was found. These findings highlight a clinical need to monitor the mental health of children and adolescents in the years following type 1 diabetes onset to identify and treat psychiatric problems associated with type 1 diabetes.

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.

Flying the nest: a challenge for young adults with cystic fibrosis and their parents.

OBJECTIVES: As young patients with cystic fibrosis (CF) grow up, they are expected to take increasing responsibility for the treatment and care of their disease. The aim of this study was to explore the disease-related challenges faced by young adults with CF and their parents, when they leave home. MATERIALS AND METHODS: A questionnaire survey of Danish patients with CF aged 18-25 years and their parents was conducted. The questionnaires were based on focus-group interviews with young adults with CF and their parents, and addressed challenges faced in the transition phase between childhood and adulthood, including different areas of disease management in everyday life. RESULTS: Among all of the patients invited, 62% (n=58/94) of young adults and 53% (n=99/188) of their parents participated in the study. In total, 40% of the 18- to 25-year-olds were living with their parents, and the parents continued to play an active role in the daily care of their offspring's disease. Among the young adults who had left home, both the patients and their parents reported many difficulties regarding disease management; the young adults reported difficulties in contacting social services and in affording and preparing sufficient CF-focused meals, and their parents reported difficulties in answering questions concerning social rights and CF in general, and in knowing how to give their offspring the best help, how much to interfere, and how to relinquish control of managing their offspring's disease. CONCLUSION: Young adults with CF who have left home have difficulties in handling the disease and their parents have difficulties in knowing how to give them the best help. There is an urgent need for holistic CF transitional care, including ensuring that young adults master the essential skills for self-management as they leave their parents.

Being Young and Getting Cancer: Development of a Questionnaire Reflecting the Needs and Experiences of Adolescents and Young Adults with Cancer.

PURPOSE: Cancer is the leading cause of nonaccidental deaths among adolescents and young adults (AYAs). In Denmark, there are substantial gaps in knowledge concerning how AYAs with cancer perceive their diagnostic and therapeutic trajectory and report health-related outcomes. The aim of this study is to describe the development of a questionnaire targeting AYAs with cancer aiming to evaluate treatment and survivorship from the perspective of the patients. METHODS: Identification of themes and development of items included in the questionnaire were based on a synthesis of literature and qualitative interviews with AYAs in an iterative process involving both a professional advisory panel and a youth panel. During the development process, items were validated through cognitive interviews. RESULTS: The final questionnaire contained 151 closed- and open-ended items divided into 6 sections regarding: (1) "Time before treatment," (2) "Being told about your illness," (3) "Being a young patient," (4) "Your treatment," (5) "Receiving help living with and after Cancer," and (6) "How are you feeling today?." One hundred one items were specifically developed for this study, while 50 were standardized validated indexes. The questionnaire combined different types of items such as needs, preferences, experiences, and patient-reported outcomes. CONCLUSION: This is one of few developed questionnaires aiming to evaluate the perspective of AYAs with cancer through their whole cancer trajectory. Results from the questionnaire survey are intended for quality improvements and research in AYA cancer care. The study highlights the importance of an extensive patient involvement in all steps of a questionnaire development process.