Search

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]

For people with disordered eating, support groups can play an important role in treatment and recovery journeys. Such resources became crucial during COVID-19, as people with disordered eating reported increased isolation, symptomology, and decreased treatment access. This study examines participants' experiences of nine, rolling, clinician-led, free, virtual support groups for disordered eating. Participants (207 attenders and 70 nonattenders (individuals who signed up for groups and never attended)) completed an online survey. Codebook thematic analysis of open response items generated topics and themes including: reasons for signing up ("community connection and seeking support," "filling a treatment gap," "behavior and support changes due to COVID-19"), barriers to participation ("interpersonal dynamics," "accessibility factors," "group structure"), and benefits of attending group ("feeling less alone," "identifying new treatment needs," "coping skills and reduction of symptoms"). Participants discussed lack of accessible, identity-aware treatment options outside of these groups, particularly for those with minoritized identities. This paper highlights the role of groups in participants' eating disorder recoveries and explores how virtual clinician-led support groups fit into the constellation of eating disorder care that increasingly includes virtual resources. Group psychotherapy specialists could consider bringing skills to facilitate spaces for community-based healing to complement conventional treatment approaches. [ABSTRACT FROM AUTHOR]

Background: Collaborative learning can effectively promote the development of higher‐order competencies, where learners collaborate via social interactions to explore and solve complex problems. It has been found that the effective occurrence of collaborative learning requires appropriate external guidance and support. In particular, collaborative interactions in open learning environments are more complex and difficult, which makes it important to provide dynamic interventions for learners according to different collaborative situations. However, the role of facilitators and the characteristics and mechanisms of their interventions have yet to be thoroughly investigated. Objectives: The study aims to uncover the characteristics and patterns of interaction among groups with different collaborative performance and facilitator performance in an open learning environment, and to explore the differentiated role of facilitators in this process. Method: Groups are categorised as high or low based on their collaborative performance and facilitator performance. This study used lag sequential analysis (LSA) and content analysis to explore the interaction patterns of groups with different collaborative performance and facilitator performance. Also, the different roles of facilitators were analysed by comparing the differences in interaction patterns of different collaborative performance groups. Results: The study found that groups with different collaborative performances and facilitator performances showed significant differences in interaction patterns, and the two had crossover effects. There is also variability in the role of facilitators in groups with different collaborative performance profiles. Patterns of transition between different layers of interaction can indicate the level of groups' collaborative engagement. Specific interaction patterns exist that are conducive to enhancing collaborative learning. Conclusions: The results of the study pointed out that groups with different collaborative performance and facilitator performance showed different characteristics of interaction patterns. The role of the facilitator in online collaborative learning is characterised by compensatory and merit‐promoting. High‐quality online collaboration is the result of multiple factors, including learners and facilitators working together. This study has practical implications for the design of instructional interventions for group collaboration in online learning communities. Lay Description: What is already known about this topic: Deep instructional interactions help stimulate group intelligence and promote knowledge creation and deep connections.The facilitation strategies of the instructional implementer in online collaborative learning contexts play an important role in guiding students to engage in interactions and promoting efficient learning.Facilitators need to adopt different intervention strategies for different learners and learning stages to advance collaborative task completion. What this paper adds: Group collaborative performance is closely related to the strength of the connection and the depth of interaction of group members.Roles of facilitator in online collaborative learning can be characterised by strong support, compensation, and merit promotion.High‐quality online collaboration is the result of multifactor interaction between learners and facilitators. Implications for practice and/or policy: Course organisers' rating scale proposed in this study can help screen and train facilitators with excellent attributes.Examining different roles of facilitators can help curriculum designers rationalise the design and organisation of collaborative instruction.When group collaboration is active, learners should be guided through activities for deeper interaction and exploration.When group collaboration is low‐spirited, learners should be encouraged to focus on the stage tasks and explore the tasks step by step. [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]