ObjectiveThis study was aimed to explore parents’ experience of assisting children affected by tuberous sclerosis complex (TSC) with subependymal giant-cell astrocytoma (SEGA) manifestation, in order to understand their caring needs and expectation of support.Setting and procedureThe study was designed according to the qualitative method of interpretative description and implied two sequential phases of data collection. The first phase was based on in-depth interviews with 18 Italian caregivers of children living with TSC. The second phase of the research was based on an online forum with 30 caregivers of children living with TSC.Participants48 Italian caregivers, assisting patients with TSC with SEGA manifestation have been involved in the study.ResultsWhen a TSC diagnosis is made, the whole family is affected psychologically. TSC has a great impact on families’ quality of life and on their ability to cope with the disease and support the child's ability to recover and reach an acceptable level of well-being. Caregivers report the experience of losing control and the feeling of loneliness and abandon from the healthcare system.Conclusion and practice implicationsFamilies of children affected by TSC need targeted psychosocial assistance in order to support patients and caregivers and facilitate their social integration.

The COVID-19 pandemic forced health authorities around the world to introduce public health measures to contain the risks of contagion. This greatly impacted on citizens' quality of life, often raising concerns and reactance. There is an ongoing urgent need to promote and sustain behavioral changes and adherence to preventive measures. Based on the theoretical framework of the Patient Health Engagement Model and a participatory co-design process, a social media campaign aimed at improving citizens' health engagement toward behavioral change for preventing the spread of COVID-19 was promoted in Italy in the early months of the pandemic. In this paper, we describe the methodological process adopted to develop the campaign, its characteristics, and the first results-in terms of audience reach and engagement in its early implementation. The discussion of this grounded-up and citizen-centered approach to social campaign development highlights key ways of promoting learning, engaging citizens, and supporting their participation in the co-production of educational interventions for behavioral change toward preventive actions.

Background The chronic and progressive evolution of Inflammatory Bowel Diseases (IBD), with its prototypical fluctuating trend, creates a condition of psycho-social discomfort, impacting the quality of life in terms of personal, working, and interpersonal. Aims In this article, we want to identify the nature and extent of the research evidence on the life experiences, the perceived engagement, the psychological, social care and welfare needs of people affected by IBD across the lifecycle. Methods Following the approach set out by Arksey and O’Malley and the PRISMA extension for scoping reviews, we conducted a scoping review in March 2019 and closed the review with an update in October 2019. It was performed using electronic databases covering Health and Life Sciences, Social Sciences and Medical Sciences, such as PubMed, Medline, Embase, Scopus, Cochrane, Web of Science, PsycInfo. Results We identified 95 peer-reviewed articles published from 2009 to 2019, that allowed to detection the main needs in children (psychological, need to be accepted, physical activity, feeding, parent style, support, social needs), adolescents (to understand, physical and psychological needs, protection, relational, gratitude, respect, and engagement) and adults (information, medical, psychological, social, work-related, practical, future-related, engagement). Although the literature confirms that the majority of the IBD units have planned provision for the different types of transitions, the quality and appropriateness of these services have not been assessed or audited for all the kinds of challenges across the life cycle. Conclusions The literature shows the relevance of organizing a flexible, personalized health care process across all the critical phases of the life cycle, providing adequate benchmarks for comparison in a multidisciplinary perspective and ensuring continuity between hospital and territory.

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Purpose Hemodialysis has become a standard therapy for adults with end-stage renal diseases. Adults undergoing hemodialysis have to cope with unique psychological issues that make their care journey particularly fatiguing. In this systematic review and meta-analysis, we aimed to summarize and evaluate the effects of psychosocial interventions on the reduction of anxiety and depression in adults with HDs. Methods We included randomized controlled trials and quasi-experimental studies that measure change in depression, anxiety, and quality of life. Results We identify three categories of psychosocial interventions delivered to adults undergoing hemodialysis. Based on our analysis, there was a medium effect of psychosocial intervention on depression (SMD − 0.85, 95%CI − 1.17; − 0.52, I2 = 80%, p < 0.01) and anxiety (SMD − 0.99, 95%CI − 1.65; − 0.33, I2 = 88%, p < 0.01) in adults undergoing hemodialysis. Conclusions Psychosocial interventions, such as psychological support or relaxation-based therapy, seems all to reduce depression and anxiety in adults undergoing HD. Preliminary evidence suggests that there may be a benefit of psychosocial interventions on the quality of life for adults undergoing HD.