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Engagement for children with mitochondrial disorder is not self evident. To develop personalised and value-based care for this population, we require knowledge about their perspectives and values with regards to everyday activities. To gain insight into children's perspective on activities by (1) asking what activities they perform, (2) how they perform them, (3) how they experience these activities and (4) their wants and needs. Seven semi-structured content analyzed interviews. The interviews identified a variety of activities. The overarching themes on wants/needs were 'I want to meet up with others whenever I want to', 'I want to be able to…', 'I don't want to…' and 'Dream'. These themes were interconnected to thirteen other themes that captured how children experience and perform activities, for example, 'Because I can decide by myself', 'Because I can do it on my own' and 'It is more fun to do things with other people'. The activities children performed represent regular childhood activities. The identified themes fit with the three aspects of the self-determination theory: autonomy, competence and relatedness. This study exposed the broad child perspective and should provide better understanding of children's choices in their participation in everyday activities.

The primary aim of this study was to assess the development of action planning in a group of typically developing children aged 3 to 10 years (N = 351). The second aim was to assess reliability of the action planning task and to relate the results of the action planning task to results of validated upper limb motor performance tests. Participants performed an action planning task in which they needed to grasp an object (a wooden play sword) and place it into a tight-fitting hole. Our main dependent variable was the grip type that participants used; that is, we measured whether initial grip was adapted in such a way that children reached a comfortable posture at the end of the action (the end-state comfort effect). Older children planned their actions more often in line with the end-state comfort effect compared with younger children. Test-retest and interrater reliability of the action planning task were good, with intraclass correlation coefficients (ICCs) of 0.90 and 0.95, respectively. We compared the action planning task with manual dexterity tests in a subset of participants (n = 197). We found a marginal relation with the manual dexterity tests, indicating that the action planning task measures different processes. In sum, our study showed that action planning increases from 3 to 10 years of age and that the experimental task we used is reliable in assessing anticipatory planning. Therefore, it may be used as a reliable additional test to investigate the degree to which motor behavior is affected at the cognitive level of anticipatory planning. (Contains 2 figures and 3 tables.)

Background: Parents of children with chronic kidney disease (CKD) experience high levels of stress in the daily management of their child's illness. Parents need continuously available support and information, yet online support programs are lacking. e-Powered Parents was developed to fill this gap; it is an online program consisting of (1) medical information, (2) an interactive part, and (3) four training modules (stress management, setting limits, communication, and coping). Prior to a large-scale evaluation, we conducted a feasibility study that consisted of an effect study and a process evaluation.Objective: The objectives of our study were to (1) identify the outcome measures that are most likely to capture the potential benefit, (2) evaluate the potential effectiveness and effect size, and (3) evaluate recruitment, reach, the dose received, and context.Methods: We conducted a feasibility study with a two-armed, wait-list randomized controlled trial (RCT). Prior to baseline, parents (n=146) were randomly allocated to group 1 or group 2. After completing the baseline questionnaire, parents in group 1 were given access to e-Powered Parents, while those in group 2 received usual care. At the 6-month follow-up (T1), all parents received a questionnaire and parents in group 2 were given access to e-Powered Parents as well. After 1.5 years, through an extra measurement (T2), we evaluated the effect of long-term exposure. Outcomes were the child's quality of life (Child Vulnerability Scale), parental stress (Pediatric Inventory for Parents) and fatigue (Multidimensional Fatigue Inventory), self-efficacy in communication with health care professionals (Perceived Efficacy in Patient-Physician Interactions, PEPPI-5), and parental perceptions of family management (Family Management Measure). Floor and ceiling effects and percentage of parents showing no change in scores were calculated. We used linear mixed models to evaluate the potential effectiveness and effect sizes using the intention-to-treat and per-protocol analyses. In the process evaluation, we evaluated recruitment, reach, the dose received, and context using a questionnaire sent to the parents, log-in data, and a focus group interview with health care professionals.Results: At T1 (n=86) and T2 (n=51), no significant effects were found on any of the five outcomes. The PEPPI-5 showed ceiling effects and high percentages of parents showing no change between the measurement times. The information and interactive part of the intervention were used by 84% (57/68) of the parents in group 1 and 49% (32/65) of the parents in group 2. The information pages were visited most often. Overall, 64% (85/133) of the parents logged in to the training platform and 31% (26/85) actually used the training modules.Conclusions: We did not observe any significant effect on any of the outcomes. This could possibly be explained by the minimal use of the intervention and by parents' heterogeneity. For continued participation, we recommend a tailored intervention and further studies to find out whether and how online programs could be used to support parents in the management of their child's CKD.Trial Registration: Netherlands Trial Registry NTR4808; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4808 (Archived by WebCite at http://www.webcitation.org/719rCicvW). [ABSTRACT FROM AUTHOR]