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Background & Objective: Epidermolysis bullosa (EB) is the term used for a group of genetic skin fragility disorders. For those living with EB, pain represents a constant challenge, with blistering and tasks such as changing dressings, adding to the distress. This paper focuses on describing and exploring the health‐care needs of children, adults and families who are affected by EB. The specific aim of the paper is to identify the needs of the EB population with a view towards informing the development of a community liaison service to support adults living with EB and the parents/carers of children living with EB. Setting and Participants: Interviews with six adults and the parents of eight children with EB were conducted. The data were analysed thematically. All participants were resident on the island of Ireland and are therefore reflecting on services in this geographic region. Results: Participants' needs were grouped into five themes: support managing physical health‐care issues; access to community/home‐based services; EB‐specific information and psychosocial support; effective interaction with health‐care professionals; and advice regarding benefits and entitlements. Discussion and Conclusions: This article represents the health‐care needs and preferences of a broad spectrum of those with EB, highlighting the need for a comprehensive service regardless of the severity of the condition. [ABSTRACT FROM AUTHOR]

The aim of this paper is to report the findings of the consultation rounds with former patients and health care professionals to inform the design of a qualitative study. We aimed to understand stakeholders' views regarding the relevance of a proposed study looking at the impact of patients witnessing cardiopulmonary resuscitation on other patients in hospital, the appropriateness of the proposed methodology and ethical aspects. We conducted an online survey (n = 22) and telephone interviews (n = 4) with former patients linked to the British Heart Foundation charity and a focus group (n = 15) with hospital health care professionals involved in cardiopulmonary resuscitation activities. Data were analysed using thematic analysis. The consultation rounds provided valuable advice on three major themes: conceptual aspects, methodological aspects and practical suggestions. The conceptual aspects were related to the relevance of the proposed study, the emotional impact for participating patients and how the social interaction among patients could influence the witnessing experience. Methodological advice included recruitment strategies and data collection methods such as the use of individual and focus group interviews, the timeframe of interviews with patients and the topics of the interview guides. In the third theme, practical suggestions were provided, such as strategies to advertise the study, improving the public's and participants' engagement throughout the study process and disseminating the findings. Overall, the study proposed in this consultation was considered relevant and worthy by patients and health care professionals to raise awareness and generate new evidence on an unconsidered aspect of cardiopulmonary resuscitation and of patients' hospital experience. These stakeholders' consultation rounds constituted a valuable exercise to design high‐quality research based on a shared vision among researchers, service users and clinicians. They also provided pragmatic advice to inform critical care practice to support patients witnessing cardiopulmonary resuscitation in hospital. [ABSTRACT FROM AUTHOR]

Aim: Spinal muscular atrophy (SMA) type 1 is a relatively common, untreatable and invariably fatal neuromuscular disorder of early childhood. Psychosocial care is vital in management of families affected by this disease. There are few studies examining the impact of having a family member with a neuromuscular disorder, and none describing parents' experiences of having a child with SMA type 1. This study explored parents' perspectives of having a child with SMA type 1, from diagnosis to bereavement, in order to inform clinical practice by identifying aspects most meaningful to parents and to aid development of support strategies.Methods: This qualitative study undertook thematic analysis of 11 in-depth interviews with 13 bereaved parents of children with SMA type 1.Results: While individuals' experiences were unique, common themes emerging from the data include: experiencing shock and anticipatory grief, processing feelings of responsibility and helplessness, experiencing multiple losses including the loss of future reproductive freedom, feeling supported, regaining a sense of control by making decisions about the child's life and death, and finding peace in the dying process.Conclusion: These findings highlight the importance of a multidisciplinary approach to the care of such families, including psychosocial support beginning from the time of diagnosis and continuing to bereavement. We suggest areas for further exploration, with a goal to develop family-centred and evidence-based psychosocial care guidelines to complement the current Standards of Care for Spinal Muscular Atrophy. [ABSTRACT FROM AUTHOR]