The "Stages Towards Completion Model": what helps and hinders children with overweight or obesity and their parents to be guided towards, adhere to and complete a group lifestyle intervention.

Purpose: Lifestyle interventions can be effective in the management of overweight and obesity in children. However, ineffective guidance towards interventions and high attrition rates affect health impacts and cost effectiveness. The aim of this study was to gain insight into the factors influencing participation, in particular guidance towards, adherence to and completion of an intervention.Methods: A narrative literature review was performed to identify factors related to participation, leading to the development of the "Stages towards Completion Model". Semi-structured interviews (n = 33) and three focus group discussions (n = 25) were performed with children and parents who completed two different group lifestyle interventions, as well as with their coaches.Results: The main barrier to participating in a lifestyle intervention was the complex daily reality of the participants. The main facilitator to overcome these barriers was a personal approach by all professionals involved.Conclusions: Participation in a lifestyle intervention is not influenced by one specific factor, but by the interplay of facilitators and barriers. A promising way to stimulate participation and thereby increase the effectiveness of interventions would be an understanding of and respect for the complex circumstances of participants and to personalize guidance towards and execution of interventions.

Medical decision-making in children and adolescents: developmental and neuroscientific aspects.

BACKGROUND: Various international laws and guidelines stress the importance of respecting the developing autonomy of children and involving minors in decision-making regarding treatment and research participation. However, no universal agreement exists as to at what age minors should be deemed decision-making competent. Minors of the same age may show different levels of maturity. In addition, patients deemed rational conversation-partners as a child can suddenly become noncompliant as an adolescent. Age, context and development all play a role in decision-making competence. In this article we adopt a perspective on competence that specifically focuses on the impact of brain development on the child's decision-making process. MAIN BODY: We believe that the discussion on decision-making competence of minors can greatly benefit from a multidisciplinary approach. We adopted such an approach in order to contribute to the understanding on how to deal with children in decision-making situations. Evidence emerging from neuroscience research concerning the developing brain structures in minors is combined with insights from various other fields, such as psychology, decision-making science and ethics. Four capacities have been described that are required for (medical) decision-making: (1) communicating a choice; (2) understanding; (3) reasoning; and (4) appreciation. Each capacity is related to a number of specific skills and abilities that need to be sufficiently developed to support the capacity. Based on this approach it can be concluded that at the age of 12 children can have the capacity to be decision-making competent. However, this age coincides with the onset of adolescence. Early development of the brain's reward system combined with late development of the control system diminishes decision-making competence in adolescents in specific contexts. We conclude that even adolescents possessing capacities required for decision-making, may need support of facilitating environmental factors. CONCLUSION: This paper intends to offer insight in neuroscientific mechanisms underlying the medical decision-making capacities in minors and to stimulate practices for optimal involvement of minors. Developing minors become increasingly capable of decision-making, but the neurobiological development in adolescence affects competence in specific contexts. Adequate support should be offered in order to create a context in which minors can make competently make decisions.

Perspectives of adolescents on decision making about participation in a biobank study: a pilot study.

OBJECTIVES: To be able to truly involve adolescents in decision making about clinical research participation, we need more insight in the perspective of adolescents themselves. To this end, adolescents in an ongoing biobank study were consulted to test a tentative decision assessment tool. METHODS: The perspectives of adolescents (n=8) concerning participation in decision making for research participation were explored in interviews with a tentative tool, which covered six topics: information material usage, understanding, disease perceptions, anxiety, decision-making process and role sharing. RESULTS: All adolescents unequivocally expressed the desire to be involved in decision making, but also wanted advice from their parents. The extent of the preferred role of adolescent versus parents varied between individuals. In decision making, adolescents relied on parents for information. More than half hardly used the information material. CONCLUSIONS: Adolescents in our study preferred a shared decision-making process. The extent of sharing varied between individuals. The decision assessment tool was a fruitful starting point to discuss adolescents' perspectives and may aid in tailoring the situation to the individual to achieve optimal participation practices. IMPLICATIONS: Consulting adolescents about their preferences concerning decision making using the tool will facilitate tailoring of the shared decision-making process and optimising the developing autonomy of minors.

Low literacy and written drug information: information-seeking, leaflet evaluation and preferences, and roles for images.

Background Low-literate patients are at risk to misinterpret written drug information. For the (co-) design of targeted patient information, it is key to involve this group in determining their communication barriers and information needs. Objective To gain insight into how people with low literacy use and evaluate written drug information, and to identify ways in which they feel the patient leaflet can be improved, and in particular how images could be used. Setting Food banks and an education institution for Dutch language training in the Netherlands. Method Semi-structured focus groups and individual interviews were held with low-literate participants (n = 45). The thematic framework approach was used for analysis to identify themes in the data. Main outcome measure Low-literate people's experience with patient information leaflets, ideas for improvements, and perceptions on possible uses for visuals. Results Patient information leaflets were considered discouraging to use, and information difficult to find and understand. Many rely on alternative information sources. The leaflet should be shorter, and improved in terms of organisation, legibility and readability. Participants thought images could increase the leaflet's appeal, help ask questions, provide an overview, help understand textual information, aid recall, reassure, and even lead to increased confidence, empowerment and feeling of safety. Conclusion Already at the stages of paying attention to the leaflet and maintaining interest in the message, low-literate patients experience barriers in the communication process through written drug information. Short, structured, visual/textual explanations can lower the motivational threshold to use the leaflet, improve understanding, and empower the low-literate target group.

Comic strips help children understand medical research: targeting the informed consent procedure to children's needs.

OBJECTIVE: Children involved in medical research often fail to comprehend essential research aspects. In order to improve information provision, a participatory approach was used to develop new information material explaining essential concepts of medical research. METHODS: A draft of a comic strip was developed by a science communicator in collaboration with pediatricians. The draft was presented to children participating in a clinical trial and to two school classes. Children were consulted for further development in surveys and interviews. Subsequently, the material was revised and re-evaluated in four school classes with children of varying ages and educational levels. RESULTS: In the first evaluation, children provided feedback on the storyline, wording and layout. Children thought the comic strip was 'fun' and 'informative'. Understanding of 8 basic research aspects was on average 83% and all above 65%, illustrating that children understood and remembered key messages. CONCLUSION: A comic strip was developed to support the informed consent process. Children were consulted and provided feedback. The resulting material was well understood and accepted. PRACTICE IMPLICATIONS: Involving children in the development of information material can substantially contribute to the quality of the material. Children were excited to participate and to 'be a part of science'.

Research information for minors: Suitable formats and readability. A systematic review.

As children age, their capacity to consent or dissent to research participation increases. Numerous regulations and guidelines require that children should receive information 'according to their capacity of understanding'. In order to gain more insight in the quality of patient information forms for minors, a systematic literature search was performed. Two aspects of quality will be analysed in this paper: the effect of format on understanding and the readability of text in the documents. A systematic search was executed in PubMed, Embase and PsycINFO. Seventeen papers on format were included. Interventions testing information formats indicate that improvement is possible, but outcome measurement varied per study and no apparently successful intervention was repeated. Only three readability papers were found, all indicating a readability gap between patient information forms and children's actual reading level. The results indicate an urgent need for further research on how to adequately inform minors about clinical trials.