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).

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.

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.