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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]

Siblings are key actors in the social network of young people in care. This paper explores young people's perceptions of changes in the quality of sibling relationships and the pathways relationships follow during the transition from the biological family into care. A thematic analysis of interviews with young Norwegian people (n = 25) in care showed that, in the biological family, sibling relationships are characterized by alliances, parentification, conflicts or nonexistence. After admission to child welfare services care, sibling relationships developed along multiple pathways. Their sibling relationships reshaped into either close and supportive, conflictual or completely broken relationships. Sibling relationships were dynamic, complex, with the pathway, and its impact on well‐being, being unique to each young person. Sibling relationship quality in the biological home did not predict relationship quality after admission to child welfare services. The implications for social worker practice are discussed. [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]

Research highlights the role of key actors and relationships in supporting the educational attainment and progress of children in care and care leavers. We know less about how relationships influence the educational journeys of people with care experience over time and how to support the educational progress and engagement of adults with care experience. The principle of "linked lives" is central to the life course perspective referring to the interdependence of human lives throughout the life course. This paper explores how the principle of linked lives can illuminate our understanding of how relationships positively influence the educational journeys of adults with care experience over time. Educational life history interviews were conducted with 18 care‐experienced adults (aged 24–36) in Ireland. Findings suggest that the principle of linked lives is a valuable conceptual tool for providing new insights on this issue. Four key themes were identified: (a) opportunities for educational support are present across the life course; (b) "family" is a central source of educational support; (c) there is intergenerational capacity for educational support; and (d) relationships beyond the "family" are supportive of education. Implications for practice, policy, and research are explored. [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]

Policy makers in Sweden and other European Member States pay increasing attention as to how best support working carers; carers juggling providing unpaid family care for older family members while performing paid work. Exploring perceived benefits and challenges with web-based information and communication technologies as a means of supporting working carers' in their caregiving role, this paper draws on findings from a qualitative study. The study aimed to describe working carers' experiences of having access to the web-based family care support network 'A good place' ( AGP) provided by the municipality to support those caring for an older family member. Content analysis of interviews with nine working carers revealed three themes: A support hub, connections to peers, personnel and knowledge; Experiencing ICT support as relevant in changing life circumstances; and Upholding one's personal firewall. Findings indicate that the web-based family care support network AGP is an accessible, complementary means of support. Utilising support while balancing caregiving, work obligations and responsibilities was made easier with access to AGP; enabling working carers to access information, psychosocial support and learning opportunities. In particular, it provided channels for carers to share experiences with others, to be informed, and to gain insights into medical and care issues. This reinforced working carers' sense of competence, helping them meet caregiving demands and see positive aspects in their situation. Carers' low levels of digital skills and anxieties about using computer-based support were barriers to utilising web-based support and could lead to deprioritising of this support. However, to help carers overcome these barriers and to better match web-based support to working carers' preferences and situations, web-based support must be introduced in a timely manner and must more accurately meet each working carer's unique caregiving needs. [ABSTRACT FROM AUTHOR]

ABSTRACT This paper presents the findings of an exploratory study on parenting in the midst of suspicion of child sexual abuse (CSA). Data were drawn from in-depth interviews with 19 parents. Five of these had been accused of CSA. Study methods followed guidelines of grounded theory approaches. Specific parenting conditions during CSA suspicion were identified. Six analytic categories were developed: uncertainty concerning abuse, dilemmas on protection, changes in parent-child relationships, changes in the natural support network, dependency upon professional competence and severe emotional strain. The results are suggested as a tool for identifying themes in order to support and strengthen parenting in ensuring the safety and well-being of children in these kinds of situations. The current paper contributes to the field by exploring the perspectives of both suspected and non-suspected parents. [ABSTRACT FROM AUTHOR]

The physical health of people diagnosed with a mental illness is significantly poorer in comparison with the general population. Awareness of this health disparity is increasing; however, strategies to address the problem are limited. Carers play an important role in the physical health care of people with mental illness, particularly in facilitating navigation of and advocating in the health care system. A specialist physical health nurse consultant position has been suggested as a way to address the physical health care disparity and limited research available suggests that positive outcomes are possible. In the present study, a qualitative exploratory research project was undertaken, involving in-depth interviews with people identifying as mental health carers. Two focus groups and one individual interview were conducted involving a total of 13 carers. The resulting data were analyzed thematically. Views and opinions about the proposed physical health nurse consultant (PHNC) position were sought during these interviews and are reported in this paper. Two main sub-themes were evident relating to characteristics of this role: reliability and consistency; and communication and support. Essentially carers expressed a need for support for themselves and consumers in addressing physical health concerns. Successful implementation of this position would require a consistent and reliable approach. Carers are significant stakeholders in the physical health of consumers of mental health services and their active involvement in identifying and tailoring services, including development of the physical health nurse consultant must be seen as a priority. [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]

Changes to the educational preparation of the nursing workforce in mental health continue to have profound effects on the availability of sufficient numbers of skilled graduates willing to work in this field. The longevity of the problem has focused attention on possible solutions. Introducing a major stream in mental health nursing in undergraduate Bachelor of Nursing programmes was proposed and supported as a potentially beneficial strategy, adopted by some Australian universities. Despite the promise invested in this strategy, systematic evaluations to determine the effectiveness or otherwise of this approach were not initiated. A qualitative exploratory study was undertaken with Australian universities, which had implemented the major stream, regarding their experiences and observed outcomes. In-depth interviews were conducted with a mental health nurse academic from each university. The barriers to the effectiveness of the major in mental health nursing are the specific focus of this paper. Thematic data analysis revealed three main barriers: clinical placements, lack of support from other academics, and integrated curricula. These barriers substantially limited the effectiveness of this strategy - in some instances, leading to the programme's termination - and must be assertively addressed to maximize the potential of the major in mental health nursing. [ABSTRACT FROM AUTHOR]

ABSTRACT Families and significant others have an important role in helping young people cope with depression, but lack of support undermines coping. In this paper, we present the views of young people with depression about the role of family and significant others in assisting them to cope with their illness. An interpretative phenomenological analysis study was undertaken using semistructured, audio-recorded interviews with 26 young people diagnosed with depression. The findings present two contrasting themes in the data, which reflect the young people's views about the influence of families and significant others in helping them cope with depression. The first, being supportive, highlighted how families and significant others helped through patience, tolerance, understanding, and encouragement; all of which strengthened young people's resilience as they attempted to cope with depression. The second theme, being unsupportive, showed how, in the young people's view, family conflict and change, and living in an unsupportive environment, compromised their ability to cope with depression. The findings suggest that mental health nurses, other clinicians, and primary care practitioners need to increase families' and significant others' understandings of depression and their capacity to support young people in these circumstances. [ABSTRACT FROM AUTHOR]

Quality relationships form the backbone of social work with children and their families. They are particularly relevant in the close, intimate work with looked-after children who have identified how important it is to them that their relationship with their social worker is positive, warm and meaningful. It is accepted that in order to achieve and maintain successful and meaningful relationships, practitioners need to engage at an emotional as well as a professional level. All too often this requires a trade-off between organizational efficiency and the emotional work of caring for looked-after children. Therefore, it would appear the role of corporate parent is increasingly difficult, involving complex decisions about how practitioners might best spend their time, where their loyalties lie and the quality and direction of the final output. Using data from a series of interviews with practitioners, this paper explores the difficulties of maintaining active emotional engagement with children using the sociological concept of emotional labour. [ABSTRACT FROM AUTHOR]