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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]

Adverse childhood experiences (ACEs) have been associated with negative mental and physical health consequences. Neighbourhood police officers (NPOs) are thought to be well placed to identify and support children experiencing ACEs. Within this paper, we describe a qualitative exploration of an initiative deployed by a large UK police force which aimed to aid early identification of young people with ACEs using police data and provide subsequent support given by NPOs. A thematic analysis was conducted using transcripts from three focus groups of NPOs, supplemented by questionnaires. Key themes identified in both sets of data offer reflections for policing and other public service provision seeking to target on the basis of ACEs, including: limitations in the usefulness of police data to identify childhood adversity; challenges using the ACEs framework as a means to target such 'early intervention'; and debates regarding the appropriate role of the police in supporting young people in adversity. Prior to replication of this intervention elsewhere, there are several points to consider: whether police data alone are sufficient in identifying ACEs; ensuring clarity regarding the role of the public sector agencies in such intervention; and determining an apt measure of success for the scheme. Key practitioner messages: Modelling using only police data can provide insight into the population of children who may have suffered from ACEs but may not provide significant opportunities for early interventionThere is a clear need for defining the role of UK police forces in the delivery of early interventionIt is evident that multi‐agency working/data sharing is crucial to preventing the duplication of referrals and interventions conducted with young people who have experienced ACEs 'There is a clear need for defining the role of UK police forces in the delivery of early intervention' [ABSTRACT FROM AUTHOR]

The management of consumer-related risk is paramount in a secure forensic mental health facility. However, the consequent risk aversion presents a major barrier to consumers forming sexual relationships in a manner that is open and accepted. Investigation of the views of nurses working in forensic mental health settings on this topic is limited, and even more so for consumers of services. This qualitative exploratory study was undertaken to elicit the views of consumers and nurses about forming sexual relationships within this long-term and secure setting. Individual in-depth interviews were conducted with 12 nurses and 10 consumers. The benefits of, and barriers to, sexual relationships was identified as a major theme, and these findings are the focus of this paper. Nurse responses included the subthemes 'supportive factors' and 'potential dangers', reflecting their qualified support. Consumer responses included the subthemes 'therapeutic', 'feeling normal', 'restrictions and barriers', and 'lack of support and secrecy'. The importance of sexual relationships was clearly articulated, as was the difficulties in forming and maintaining them within the forensic setting. More open discussion about this commonly-avoided issue and the education of nurses and other health professionals is required. [ABSTRACT FROM AUTHOR]

Rationale, aims and objectives The shortage of kidney donors and benefits of kidney transplantation make graft success imperative. Medication adherence is critical to prevent the risk of graft rejection. This paper examines how adults are prepared and supported by renal transplant co-ordinators and pharmacists to take their medications as prescribed in kidney transplantation. Methods Renal transplant co-ordinators and pharmacists of all five hospitals offering adult kidney transplantation in Victoria, Australia, were interviewed between November 2013 and February 2014. All data underwent qualitative descriptive analysis. Results Nine renal transplant co-ordinators and six pharmacists were interviewed. Although there was no standardized approach to education or other evidence-based strategies to facilitate medication adherence, there were similarities between sites. These similarities included printed information, pre-transplant education sessions, the use of medication lists and medication administration aids, intensive education in hospital and ensuring an adequate supply of medications post-discharge. Conclusions Renal transplant co-ordinators and pharmacists recognized the importance of early patient education concerning immunosuppressant medication. However, each site had developed their own way of preparing a patient for kidney transplantation and follow-up in the acute hospital setting based on experience and practice. Other non-educational strategies involving behavioural and emotional aspects were less common. Differences in usual care reinforce the necessity for evidence-based health care for best patient outcomes. [ABSTRACT FROM AUTHOR]

The views and opinions of people who use mental health services are being increasingly acknowledged in relation to rights-based, socially-inclusive, and recovery-oriented care. However, little is known of the experiences of lesbian, gay, bisexual, and transgender ( LGBT) people in this respect. The aim of the present study was to explore the experiences and needs of LGBT people in relation to mental health services. The study was an exploratory design utilizing mixed methods. Both quantitative and qualitative data were collected using a survey instrument ( n = 125) and in-depth semistructured interviews ( n = 20) with a sample of people who had completed the survey. This paper will report on the findings from the interview data. The data were thematically analysed, and the main themes that emerged included accessing services, treatment choices, mental health service experiences, and other supports. The findings inform the discussion, and recommendations are made in terms of future mental health practice, education, and research. [ABSTRACT FROM AUTHOR]