Language barriers have been reported to have a detrimental effect on various outcomes in paediatric care, such as therapy adherence, and may even cause medical treatment errors. To address this issue, we developed a set of 63 cards with which a wide range of specific messages can be conveyed nonverbally in a clinical context. The conceptualization of the tool involved multiple phases. In Study 1, we held a workshop with 11 children and adolescents between 8 and 19 years that had received treatment for oncological conditions to gain an understanding of the specific challenges. In Study 2, we presented a first prototype to 3 children and 14 adults; participants were asked to rate the cards on multiple dimensions. Based on information from the previous trials, we developed a second prototype and asked 10 children and 7 adults to rate the cards on multiple dimensions. In this multidisciplinary approach in addition to our experts of clinical psychology we involved patient advocators and graphic designers in the process to achieve high feasibility and comprehensibility; based on the workshop, expert consensus surveys, data gathered in evaluation, all prototypes and the final card set were developed in close collaboration. Participants had little difficulty interpreting the cards and rated the information content as adequate. Importantly, a majority of participants indicated that they would keep using the tool during their stay at the hospital. Overall, the evaluation implied high acceptance and usability. The final card set is a promising communication tool in clinical paediatric settings with various language barriers. Further research should address how patient outcomes are impacted by using the tool.
Many adolescents and young adult (AYAs) childhood cancer survivors face disease- or therapy-related late-effects, which limit their participation in various areas of daily life. AYAs are often left alone in our health care system, and many worry about their ability to cope with long-term sequelae, and some are even lost to follow-up. Therefore, in the present study, a targeted aftercare program was developed and evaluated with the goal of facilitating three important “life skills”: (1) self-perception, (2) social interaction and conflict management, and (3) self-conscious communication of support needs. A total of n = 13 participants (19.2–30.2 years, mean age 22.8 years) completed a 3-day aftercare seminar, at the end of which each participant wrote a reflection letter (“letter to my future self”), elaborating on observed effects of the seminar, applicability of the given information in daily life, and the direct impact of the seminar on their individual circumstances. The reflection letters were analyzed using qualitative content analysis. All target life skills were mentioned in the reflection letters. The participants reported individual benefits from the program especially with respect to self-perception and self-confidence, giving and taking feedback, and acceptance of personal strengths and weaknesses. Moreover, the feeling of “not being alone” was associated with the survivors’ experience of emotional and social support. This evaluation highlights the potential of a one weekend aftercare seminar to address important life skills that are known to positively influence health behavior in AYAs. The detailed description of the seminar can serve as a basis for making this kind of aftercare accessible for other people in similar circumstances.
PURPOSE: Many adolescents and young adult (AYAs) childhood cancer survivors face disease- or therapy-related late-effects, which limit their participation in various areas of daily life. AYAs are often left alone in our health care system and many worry about their ability to cope with long-term sequelae and some are even lost to follow up. Therefore, in the present study a targeted aftercare program was developed and evaluated with the goal of facilitating three important “life skills”: (1) self-perception, (2) social interaction and conflict management as well as (3) self-conscious communication of support needs. METHODS: A total of n=13 participants (19.2-30.2 years, mean age: 22.8 years) completed a three-day aftercare seminar, at the end of which each participant wrote a reflection letter (“letter to my future self”), elaborating on observed effects of the seminar, applicability of the given information in daily life and the direct impact of the seminar on their individual circumstances. The reflection letters were analyzed using qualitative content analysis. RESULTS: All target life skills were mentioned in the reflection letters. The participants reported individual benefits from the program especially with respect to self-perception and self-confidence, giving and taking feedback, and acceptance of personal strengths and weaknesses. Moreover, the feeling of “not being alone” was associated with the survivors’ experience of emotional and social support. CONCLUSIONS: This evaluation highlights the potential of a one weekend aftercare seminar to address important life skills that are known to positively influence health behavior in AYAs. The detailed description of the seminar can serve as a basis for making this kind of aftercare accessible for other people in similar circumstances.
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