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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: 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]