Given the inherent complexity of rare paediatric diseases and the sensitive emotional context of the situations they create (due to the patients’ age and the tense uncertainty surrounding the progression of the disease), communication between the adults involved is a key tool in the efforts to provide these children and youths a better quality of life. We conducted ten interviews with families of children with rare diseases, in the aim of exploring how communication between doctors and patients affect their daily lives. All participants, members of FEDER (a Spanish federation of associations of patients with rare diseases) were invited by phone or email to participate in a semi-structured interview including questions on clinical information, communication experiences with healthcare professionals, and the impact these had on the interviewees’ relationships with them. To analyse these interviews, we used the ‘grounded theory’ methodology and open and axial text coding techniques, in addition to those identifying the properties and dimensions of the categories formulated. The core category we have proposed is ‘adjustment of mutual trust’, with said category describing the attitude and behaviour of doctors who inspire trust in the parents of paediatric patients diagnosed with a rare disease. More specifically, said behaviours or sources of trust are: appearing human, sensitive and empathetic; showing transparency and communicative openness; being supportive of parental proactivity; and being available to families at all times. Trust is the cornerstone of parent-doctor communication in the field of children with rare diseases. If the sources of trust are present, they create a degree of trust that bolsters both parties in the search for a common goal: providing the child with the best possible care.

In this paper, we propose a vision of the role of parent/caregiver with children affected by a rare disease. This vision is rooted in data obtained from our own research; however, our analysis and interpretation of this data have been subsequently checked against existing theoretical models. The research aims to explore how parents who look after children with a rare disease experience their role as caregivers and how they assimilate their role identity in this task. Semi-structured interviews were performed with parents of 10 children, and a qualitative data analysis was conducted using grounded theory. We have identified ten main categories using a grounded theory approach: stress, disorientation, insecurity, isolation, faith, trust, attention, communication with professionals, private proactivity and public proactivity. Our results also show that when parents perceive a greater burden due to looking after a child with a rare disease, the result is a change in the usual parental role. In our contribution, we offer a general outline of how parents build a role identity centred on caring for a child with a rare disease. We posit that this role identity is the outcome of the parents’ success or failure in gradually overcoming fear through love. We have conceptualized this process as navigating between love and fear.

This research characterized how Facebook deals with rare diseases. This characterization included a content-based and temporal analysis, and its purpose was to help users interested in rare diseases to maximize the engagement of their posts and to help rare diseases organizations to align their priorities with the interests expressed in social networks. This research used Netvizz to download Facebook data, word clouds in R for text mining, a log-likelihood measure in R to compare texts and TextBlob Python library for sentiment analysis. The Facebook analysis shows that posts with photos and positive comments have the highest engagement. We also observed that words related to diseases, attention, disability and services have a lot of presence in the decalogue of priorities (which serves for all associations to work on the same objectives and provides the lines of action to be followed by political decision makers) and little on Facebook, and words of gratitude are more present on Facebook than in the decalogue. Finally, the temporal analysis shows that there is a high variation between the polarity average and the hour of the day.

Caring for a person with dementia burdens family caregivers, and there is a close negative relationship between this burden and their quality of life (QoL). Research suggests that caregivers’ main needs are information and training about the disease and support from others experiencing the same situation, and Internet interventions hold considerable promise for meeting these needs. Virtual communities of practice (VCoPs) are Internet frameworks to share knowledge where members collaborate and achieve a sense of trust in the community. This paper seeks to evaluate the impact of participating in a VCoP (developed through an App) on the QoL of caregivers to people with Alzheimer’s. Results show QoL before and after the intervention changed significantly. The impact of VCoP on caregivers’ overall QoL is moderated by age and relation with the person with Alzheimer’s, specifically those over 65, and spouses. VCoPs allow interaction and knowledge sharing among caregivers which provide them mainly with information and support from peers helping them to meet their needs. Furthermore, caregivers’ QoL did not decrease when their relative deteriorated functionally, which could be due to the participation in VCoP. Although we found significant pre- and post differences in caregivers’ health literacy, we must report the ambiguous result that this variable only impacts on QoL’s physical domain. Participants also reported that they had a positive experience because the App was perceived to be a useful tool, because they could manage their own participation and they met peers and felt less lonely. Results suggest that participation in a VCoP impacts positively on caregivers’ QoL.

Background: The long-term use of benzodiazepines (BZDs) poses significant health risks, including cognitive impairment, falls, and dependency, despite guidelines recommending against prolonged use. Effective deprescribing interventions are essential, but evidence on optimal strategies in primary healthcare remains fragmented. Objective: This overview synthesizes evidence from systematic reviews of interventions aimed at reducing inappropriate BZD prescribing in primary care. It identifies barriers and facilitators, assesses the use of behavioral theories, evaluates intervention effectiveness, and appraises methodological quality. Methods: A comprehensive literature search was conducted across four electronic databases (MEDLINE via PubMed, Cochrane Database of Systematic Reviews, Epistemonikos, and PsycINFO) up to September 15, 2024. Systematic reviews evaluating deprescription strategies targeting healthcare professionals in primary care settings were included. Two independent reviewers screened studies and extracted data on intervention characteristics, behavior change techniques, and outcomes. The AMSTAR-2 tool was used to assess methodological quality. Results: From 2,577 records identified, 14 systematic reviews met inclusion criteria, comprising 279 primary studies with minimal overlap (Corrected Covered Area = 1.24%). The majority of interventions were randomized controlled trials from high-income countries, with only one review including a lower-middle-income country. Common deprescribing strategies were gradual dose reduction (71%), patient education (50%), cognitive-behavioral therapy (43%), and pharmacist-led interventions (36%). Only one review explicitly used a behavioral theory. Key barriers included patient dependency, fear of withdrawal, provider resistance, insufficient training, low self-efficacy, and limited healthcare resources. Facilitators were structured education, shared decision-making, pharmacist involvement, and goal-setting. Multifaceted interventions that integrated behavioral components, especially those involving pharmacists and structured patient education, consistently demonstrated greater and more sustained effectiveness. Conclusions: This overview demonstrates that multifaceted interventions—particularly those integrating patient education, audit-and-feedback, and pharmacist involvement—are the most effective for reducing inappropriate benzodiazepine use in primary care. Evidence also suggests that even brief, theory-informed interventions can achieve moderate effectiveness. Despite this progress, most studies lack explicit theoretical frameworks, underscoring the need for theory-driven approaches to enhance intervention design, implementation, and sustainability. Future research should focus on patient-centered strategies, long-term adherence, and broader representation from diverse socioeconomic settings. Registered in PROSPERO (CRD42024548653).

Introduction: Knowledge sharing can only happen in the context of a trusting and supportive environment, such as evolves in communities of practice and their virtual equivalent, virtual communities of practice. The main objective of this study was to understand knowledge sharing between participants in a virtual community of practice of caregivers of people with Alzheimer’s. Methods: The authors designed their own mobile application, and two virtual communities of practice were created independently and differentiated by how they were moderated: one by an expert caregiver and the other by three health professionals. 38 caregivers and four moderators were involved in the study, which ran between July 2017 and April 2018. A total of 1925 messages were exchanged within the two communities and used as data in the study. Message data was analysed using LINKS (Leveraging Internet Networks for knowledge sharing). Results: Participants were more motivated to acquire knowledge related to caring for the person with Alzheimer’s rather than caring for themselves. The purpose of the messages was to inform others about the sender and not to seek answers. It seems that the interaction was more to socialise and to feel heard, than to gain information. Face to face meetings appear to have accelerated community development. On nearly every parameter, behaviour was significantly different in the two communities, reflecting the importance of the character of the moderator. Caring for oneself was a much stronger theme in the community that included health professionals. Experiential knowledge sharing was particularly strong in the group led by a caregiver. Discussion: Caregivers adapted the virtual community of practice to their own needs and mainly shared social knowledge. This focus on social support, which seems to be more valued by the caregivers than information about the disease, was not an expected pattern. Virtual communities of practice where peers count on each other, function more as a support group, whereas those moderated by health professionals function more as a place to go to acquire information. The level of interactivity points to such communities being important for knowledge sharing not mere knowledge transfer.