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Objective: Although Ireland has one of the highest levels of well‐being in Europe, having a health condition has been found to have a direct negative impact. The aim of this study is to evaluate the current situation and the experiences of patients with epidermolysis bullosa (EB), a rare genetic skin disease, and their relatives living in Ireland, with a focus on burdens and helpful practices. Methods and Measures: In a mixed‐methods design, a series of standardised questionnaires were combined with open‐ended questions. Via an online survey, data from n = 59 EB patients and relatives of EB patients living in Ireland were collected. Results: EB affects both the patients and their relatives. Burdens were found in relation to the visibility of EB, the degree of severity, the current health status, reduced mobility, the financial impact of EB, the psychosocial impact and personal and social resources. The paper also analyses existing resources and highlights opportunities for support and needs of improvement. Conclusion: Quality of life with EB is influenced by somatic symptoms and the psychosocial burden. Individual helpful practices in dealing with this rare disease can be considered as mediators, but they need to be supported by structural and healthcare improvements. Patient or Public Contribution: The perspective of EB patients, their relatives and EB experts were taken into account in the development of the study design via two feedback loops with the EB patient organisations DEBRA Ireland and DEBRA Austria. The design was adapted accordingly. Additionally, by including open‐ended questions, patients and relatives could contribute their individual perspectives and add insights into their lives with EB that might not have been captured with the structured online survey alone. [ABSTRACT FROM AUTHOR]

Background: Health sciences education prepares students for social‐ and healthcare by developing evidence‐based nursing, leadership and working life skills, including collaboration. Due to the changes caused by the global pandemic, health sciences education has shifted more to online and hybrid contexts, which can challenge students' competence development. Students' competence development and interaction in collaborative hybrid learning is a little researched area. Objectives: To observe and evaluate health sciences students' competence development in a collaborative hybrid learning context. Methods: This quasi‐experimental mixed‐method study was implemented by providing educational intervention. First‐year Bachelor's degree health sciences students (n = 18) of a Finnish university completed an educational intervention with synchronous online and face‐to‐face learning. Students' collaborative hybrid learning and interaction were video observed, while self‐evaluation of competence development was made with a questionnaire. Results: In the collaborative interactions, the students showed analytical thinking, problem‐ solving and communication and technology skills. Extensive knowledge of health sciences and ethics skills was not strongly visible in interaction. The students effectively used collaborative work time to perform tasks. Cognitive interaction (monitoring and evaluating learning) was observed in 85% and socio‐emotional interaction (expressions of emotions and motivation) in 53% of the data. Related to the students' learning results, the students' ability to communicate and interact with culturally different people improved after the educational intervention. Conclusion: Collaborative learning methods in hybrid learning can create opportunities for students to construct their competence in interaction. Attention should be paid to different areas of competence and the role of socio‐emotional interaction. Lay Description: What is already known about this topic: Health sciences education prepares students for social and healthcare by developing working life skills, including collaboration.Hybrid learning brings benefits but challenges the equity of students with different attention modes.Collaborative learning is widely used but has not been studied much in hybrid context.Students' competence development and interaction in collaborative hybrid learning is a little researched area. What this paper adds: The purpose was to observe and evaluate health sciences students' competence development in a collaborative hybrid learning context.Hybrid collaborative interaction encourages students to construct knowledge in health sciences.The students utilised the collaborative time appropriately.Socioemotional interactions were very visible in collaborative learning. Implications for practice: This study helps educational organisations to design hybrid model education.The design requires pedagogical and technical competence and should include collaborative methods.Attention should be paid to different areas of competence in collaborative learning.The role of socio‐emotional interaction needs more focus in hybrid learning. [ABSTRACT FROM AUTHOR]

This paper explores the perception of "relatives" during the rehabilitation of young adults with severe acquired brain injury (SABI). This longitudinal qualitative study followed eight young adults with a SABI from hospital discharge to a year and a half after discharge. The design encompassed professional records, interviews, and surveys, including a name generator list completed by the young adults and focus group interviews with both their families and professionals. We apply a sociological theoretical framework concerning friendship, and we employ social network analysis (SNA) methodology to capture, visualise, and analyse the young adults' significant social relations. Social relations engaged as relatives during rehabilitation are to a large extent determined by the perceptions of professionals and the parents of the young adult. These perceptions contain a limited number of social relations, with priority given to biological and juridical ties. This might reflect the reduced social support available for the young adult, who initially had a much larger social network. The authors suggest a professional rethinking of who "relatives" are as well as considering these social ties as dynamic. Rehabilitation professionals must be aware of and pay attention to differing perceptions that exist as to who qualifies as significant social relations in order to reconsider the practical implementation of relative involvement. The perception of who relatives are during the rehabilitation process should be reconsidered and extended to include who the young adult perceive as significant social relations. Relatives are not a fixed entity and should be considered dynamically throughout the rehabilitation process. Social relations of the young adult must to a larger extent be considered during rehabilitation to prevent social isolation in the long run. [ABSTRACT FROM AUTHOR]

Background: People with post‐stroke aphasia (PWA) are more likely to experience serious mood disorders compared with those without. Emotional regulation may be important for influencing life participation after stroke. Understanding emotional regulation in the context of aphasia is important for promoting personally defined recovery, psychological well‐being and life participation. Aims: To explore how individuals experience and regulate negative emotional responses to aphasia as part of re‐engaging with life. Methods & Procedures: In‐depth semi‐structured qualitative interviews with 14 PWA were conducted. The focus and design were developed with public and patient involvement contributors. Reflexive thematic analysis was applied. Outcomes & Results: Analysis generated three themes, which captured inherent diversity across participants in terms of emotional experiences, responses and regulation strategies: (1) emotional upheaval at all stages of recovery; (2) regulating emotional upheaval; and (3) discerning possibilities for life participation. Emotional regulation occurred both within and without the context of formal support services. Conclusions & Implications: Individuals may be differently (en)abled in responding positively, with implications for aphasia psychological support and self‐management interventions. The findings may inform future interventions to optimize well‐being and personally meaningful outcomes for PWA. WHAT THIS PAPER ADDS: What is already known on the subject: PWA experience significant psychosocial upheaval and are at risk of mood disorders. Emotional regulation may be important for influencing one's emotional state, social participation and relationships after stroke. There is a need to better understand the ways in which PWA experience and regulate their emotions to develop better support for personally defined recovery. What this paper adds to existing knowledge: PWA may experience significant and pervasive mood disorders in the long term after stroke. This may be compounded by worries for their children's well‐being. Some, but not all, regulate emotions by drawing on positivity, determination, gratitude or stoicism. Having (supportive) opportunities to experience the impact of aphasia is important for discerning helpful strategies and participation opportunities. What are the potential or actual clinical implications of this work?: Confronting altered abilities requires supportive, responsive opportunities sensitive to emotional responses. Opportunities for peer support and/or meaningful emotional support and compassion from family and friends are important therapeutic targets. Therapeutic input should pay attention to any familial and parenting concerns that may be compounding low mood. Although emotional regulation and recovery may occur without formal support, mental health services must be organized in such a way that PWA can access as needed. [ABSTRACT FROM AUTHOR]

Background: This study aims to integrate the theories of social presence and social identity to examine the effectiveness of group‐based problem‐based learning (PBL) in learning communities. Social presence is a critical factor in determining the success of collaborative learning in group‐based PBL activities. Although several studies have investigated the effects of using self‐directed and collaborative learning, they present weak evidence within those studies to explain the impact of social interaction on perceived PBL performance in nursing internship programs. Objectives: This study develops a second‐order formative model to examine the relationship between social presence, trust, social identification and students' perceived PBL performance. Methods: The partial least squares technique is used to analyse data from 409 nursing interns who studied at seven medical universities or nursing colleges. Results and Conclusions: The results indicate that all hypotheses are supported, which is an underaddressed topic in the nursing internship education literature. Notably, the findings of this study contribute to a better understanding of the interns' perceived PBL performance during the internship. Lay Description: What is already known about this topic?: Previous studies have confirmed that social presence significantly affects learning performance.In learning communities, social interaction depends on the development of trust networks. What this paper adds?: This study reveals that students' perceived problem‐based learning (PBL) performance can be measured by the four primary of independent study, group interaction, reasoning skills and active participation. Accordingly, social presence, social identification and trust can significantly influence these four dimensions of learning performance.The social interaction in community‐based PBL contexts was observed, and it is found that students' level of social presence have a positive influence on their social identification, trust and perceived PBL performance. The implications of study findings for practitioners: The interpersonal interaction among students in the online PBL communities improves the students' understanding of PBL processes and enhances their learning outcomes in nursing internship programs.The findings of this study can effectively guide educators and instructors to develop effective approaches to organize and manage PBL‐based nursing internship programs. [ABSTRACT FROM AUTHOR]