Needs regarding balancing their personal life are seldom prioritized by parents as the child's needs are considered more important. Therefore, it is important that healthcare professionals should not only attend to the abilities of parents concerning their child's disease management, but also focus on the parents' abilities in balancing their responsibilities as a caregiver with their own personal life.

Adolescent patients and healthcare professionals find it difficult to initiate the discussion on sexual health in consultations. The aim of this integrative review is to give an overview of determinants in the communication about sexual health between adolescents with chronic conditions, their parents, and their healthcare professionals. A systematic literature search for the period of January 2000 to October 2018 was conducted in four databases (Cinahl, Cochrane, PsycINFO, and Pubmed) and resulted in fifteen included studies. Four determinants were found in these studies: attitude, beliefs, knowledge, and self-efficacy. Patients, parents, and healthcare professionals experienced sexual health as a taboo topic and felt not comfortable talking about it. Both patients and professionals expressed a need to discuss sexual health, however personal and practical barriers withhold them from initiating the discussion. This in-depth overview suggests that all four determinants should be targeted to improve communication about sexual health in healthcare settings. Future research should be conducted to give more insight in the experiences and support needs of adolescent patients. On the long term, the discussion about sexual health should become normalized by improving knowledge, training, and support for healthcare professionals and integrating sexual health in education and hospital policies.

BackgroundThe care for children with a chronic kidney disease (CKD) is complex. Parents of these children may experience high levels of stress in managing their child’s disease, potentially leading to negative effects on their child’s health outcomes. Although the experienced problems are well known, adequate (online) support for these parents is lacking.ObjectiveThe objective of the study is to describe the systematic development of an online support program for parents of children with CKD, and how this program will be evaluated.MethodsIntervention Mapping (IM) was used for the development of the program. After conducting a needs assessment, defining program objectives, searching for theories, and selecting practical applications, the online program e-Powered Parents was developed. e-Powered Parents consist of three parts: (1) an informative part with information about CKD and treatments, (2) an interactive part where parents can communicate with other parents and health care professionals by chat, private messages, and a forum, and (3) a training platform consisting of four modules: Managing stress, Setting limits, Communication, and Coping with emotions. In a feasibility study, the potential effectiveness and effect size of e-Powered Parents will be evaluated using an explorative randomized controlled trial with parents of 120 families. The outcomes will be the child’s quality of life, parental stress and fatigue, self-efficacy in the communication with health care professionals, and family management. A process evaluation will provide insight in parents’ experiences, including their experienced level of support.ResultsStudy results are expected to be published in the summer of 2016.ConclusionsAlthough the development of e-Powered Parents using IM was time-consuming, IM has been a useful protocol. IM provided us with a systematic framework for structuring the development process. The participatory planning group was valuable as well; knowledge, experiences, and visions were shared, ensuring us that parents and health care professionals support the program.Trial RegistrationDutch Trial Registration: NTR4808; www.trialregister.nl (Archived by WebCite at http://www.webcitation.org/6cfAYHcYb)

BackgroundParents 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.ObjectiveThe 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.MethodsWe 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.ResultsAt 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.ConclusionsWe 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...

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