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Background: Acquired laryngotracheal stenosis (LTS) is a rare condition that causes breathlessness and dyspnoea. Patients have reconstructive airway surgery to improve their breathing difficulties, but both LTS and the surgery can cause voice difficulties. The existing evidence base for management of voice difficulties for adults with LTS focuses on symptoms. There is limited information to provide clinical guidance for speech and language therapists (SLTs) and a limited understanding of the impact of voice changes on adults with LTS. Aim: To investigate the lived experience of adults with laryngotracheal stenosis (LTS), who have had reconstructive surgery; here focussing on voice concerns with the aim of guiding clinical care for SLTs. Methods and Procedures: A phenomenological, qualitative study design was used. Focus groups and semi‐structured interviews were completed with adults living with LTS who had had reconstructive surgery. Audio recordings were transcribed and inductive thematic analysis was used by the research team to identify themes and sub‐themes. Outcomes and Results: A total of 24 participants (five focus groups and two interviews) took part in the study before thematic saturation was identified in analysis. Three main themes were identified specific to the experience of living with LTS: the Medical, Physical and Emotional journey. All participants referenced voice difficulties as they related to each of these overall themes. Sub‐themes directly related to voice included experience of surgery, information provision, staff expertise/complacency, symptoms, symptom management, identity, support networks, impact on life and living with a chronic condition. Conclusions and Implications: In this qualitative study participants have described the integral part voice difficulties play in their lived experience of LTS and reconstructive surgery. This is considered in the context of their clinical care and the need for individualised management and information provision throughout the course of their condition. The broader research literature relating to voice difficulties is explored with links made to people with LTS and recommendations made for future research into people living with LTS and dysphonia. What this paper adds: What is already known on this subject: Adults with laryngotracheal stenosis (LTS) experience voice changes as a result of their condition, and the surgeries necessary as a treatment. These changes can lead to altered pitch, vocal fatigue, loss of pitch range and loss of volume control. Although there are known psychosocial implications both to living with a chronic condition and voice difficulties there has been no research exploring this in adults with LTS, and there is minimal clinical guidance for speech and language therapists (SLTs) working with these patients. What this paper adds to existing knowledge: This research is the first study to explore the lived experience of adults with LTS who undergo reconstructive surgery, focusing on their voice concerns. This study demonstrates the multifactorial impacts of voice changes on all aspects of the lives of adults with LTS and the need for individualised information provision and clinical care to help support them. What are the potential or actual clinical implications of this work?: Adults with LTS want expert SLTs to facilitate their care and support them throughout their LTS journey alongside other support networks. They want to be carefully prepared for reconstructive surgery and given clear information about symptoms and management of their voice difficulties. This has led to the reorganisation of the care pathway at our centre, and the introduction of a patient‐led pretreatment session. [ABSTRACT FROM AUTHOR]

The COVID‐19 pandemic presented numerous challenges to acute malnutrition screening and treatment. To enable continued case identification and service delivery while minimising transmission risks, many organisations and governments implemented adaptations to community‐based management of acute malnutrition (CMAM) programmes for children under 5. These included: Family mid‐upper arm circumference (MUAC); modified admission and discharge criteria; modified dosage of therapeutic foods; and reduced frequency of follow‐up visits. This paper presents qualitative findings from a larger mixed methods study to document practitioners' operational experiences and lessons learned from these adaptations. Findings reflect insights from 37 interviews representing 15 organisations in 17 countries, conducted between July 2020 and January 2021. Overall, interviewees indicated that adaptations were mostly well‐accepted by staff, caregivers and communities. Family MUAC filled screening gaps linked to COVID‐19 disruptions; however, challenges included long‐term accuracy of caregiver measurements; implementing an intervention that could increase demand for inconsistent services; and limited guidance to monitor programme quality and impact. Modified admission and discharge criteria and modified dosage streamlined logistics and implementation with positive impacts on staff workload and caregiver understanding of the programme. Reduced frequency of visits enabled social distancing by minimising crowding at facilities and lessened caregivers' need to travel. Concerns remained about how adaptations impacted children's identification for and progress through treatment and programme outcomes. Most respondents anticipated reverting to standard protocols once transmission risks were mitigated. Further evidence, including multi‐year programmatic data analysis and rigorous research, is needed in diverse contexts to understand adaptations' impacts, including how to ensure equity and mitigate unintended consequences. Key messages: COVID‐19 CMAM programme adaptations enabled service continuity despite pandemic‐related challenges. Further evidence is needed on long‐term impacts.Family MUAC was well‐accepted and addressed screening gaps from COVID‐19 disruptions. Challenges included sustaining caregiver measurement accuracy; handling inaccurate self‐referrals to encourage health‐seeking behaviours; and limited programme design and monitoring guidance and tools.Modified admission criteria and therapeutic food dosage reduced contact between staff and children and streamlined logistics and implementation. Concerns remained about effects on programme admissions and outcomes.Reduced frequency of follow‐up visits successfully reduced facility crowding and need for caregiver travel. However, infrequent monitoring of childrenmay miss deterioration. [ABSTRACT FROM AUTHOR]

Background: To facilitate change for person‐centred care, there is a need to invest in measures to assess if and how healthcare systems are delivering care based on the principles of person‐centred care. This paper describes the first phase in developing an item bank to measure patients' experiences of person‐centred care. Aim: The aim was to translate, culturally adapt and evaluate candidate items to measure person‐centred care from the patient's perspective. Methods: The Centre for person‐centred care at Gothenburg university and the UK Person‐centred and coordinated care model informed our conceptual framework. The initial pool of item candidates originated from a previous systematic review where 855 items were identified. In this study, a mixed method design was used involving persons with experience as patients, caregivers, healthcare professionals and researchers in person‐centred care or questionnaire design (n = 84). The item analysis included two validation rounds using web questionnaires, a focus group and cognitive interviews. Results: From the initial pool, 155 items covering core domains and subdomains of person‐centred and coordinated care were selected for translation and qualitative item analysis. After translation, 44 items were excluded (duplicates). After the first validation round, 21 items were rephrased and 35 were excluded (due to low ratings, lack of comprehensibility, were duplicates or too specifically phrased). To reflect the ethical basis of person‐centred care, rewordings were also made to encompass the patient as an active partner in care and where communication and information goes two‐ways and care is co‐created. After the second round, 11 items were rephrased and 25 items were excluded (for being redundant/repetitive). Six new items were added (covering access to care, patient capabilities, mental well‐being and identifying goals). Conclusion: We have developed a first set of 57 items to proceed towards developing an item bank to measure the patient experiences of person‐centred care. [ABSTRACT FROM AUTHOR]

Introduction: Longitudinal Integrated Clerkships (LICs) have demonstrated benefits for students' learning and development in medical education globally. The model emphasises importance with respect to continuity and time in the workplace for learners. There is a need to explore how LICs become a viable training model for learners. An amalgamative LIC model was drawn upon to inform the design of a placement for trainee pharmacists on a hospital ward. This study sought to determine the local viability of a longitudinal placement for trainee pharmacists, using communities of practice learning theory to interpret findings. Methods: A design‐based research approach informed study design. A longitudinal placement was implemented on two hospital wards for 13 weeks. Trainees (n = 3) were interviewed four times over a 14‐week period. Ward staff (n = 14) were interviewed at week 14. Interviews were transcribed verbatim. Qualitative longitudinal analysis, using the trajectory approach, was conducted using abductive analysis. The coded data were organised into a framework and subthemes were created. Results: Trainees acquired membership within the multi‐disciplinary ward team over time. This led to an enriched learning experience and the trainee's professional development improved as they attained more responsibilities. This enabled them to make a greater contribution to patient care; more medication consultations occurred, and discharge times improved. Discussion The local viability of the longitudinal placement appears to be linked to the trainee's ability to acquire membership within the ward community of practice. Membership gave trainee's access to learning opportunities, supporting their development, and they earnt the trust of staff, leading to more responsibilities for providing patient care. Further research into developing longitudinal placements that support trainee healthcare professionals to acquire membership within communities of practice is warranted. This paper highlights the importance of healthcare trainees acquiring membership within healthcare teams to enhance their learning experience, advance their professional development and improve patient care. [ABSTRACT FROM AUTHOR]

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]

Background: To guide the development of high‐quality care for people with multiple chronic conditions, partners of the European Joint Action CHRODIS developed the Integrated Multimorbidity Care Model. To assess its suitability for improving care for people with multimorbidity in the Netherlands, the model was piloted in a primary care setting with both patients and care providers. Aim: This paper reports on the patient perspective, and aims to explore the priorities, underlying values and preferences for care of people with multimorbidity. Participants and methods: Twenty persons with multimorbidity (selected from general practice registries) participated in a focus group or telephone interview. Subsequently, a questionnaire was completed by 863 persons with multimorbidity registered with 14 general practices. Qualitative data were thematically analysed and quantitative data by means of descriptive statistics. Results: Frequently prioritized elements of care were the use of shared electronic health records, regular comprehensive assessments, self‐management support and shared decision making, and care coordination. Preferences for how these elements should be specifically addressed differed according to individual values (eg weighing safety against privacy) and needs (eg ways of coping with multimorbidity). Conclusion: The JA‐CHRODIS Integrated Multimorbidity Care Model reflects the priorities and preferences for care of people with multimorbidity in the Netherlands, which supports its relevance to guide the development of person‐centred integrated care for people with multiple chronic conditions in the Netherlands. Patient contribution: European patient experts contributed to the development and applicability assessment of the JA‐CHRODIS Integrated Multimorbidity Care Model; Dutch patients participated in focus groups, interviews and a survey. [ABSTRACT FROM AUTHOR]

Background: Families and professionals caring for a child without a definitive diagnosis face unique challenges, particularly in relation to managing uncertainty; access to healthcare; obtaining relevant information and support; and trying to navigate a healthcare system that is often fragmented. We used co‐design to inform the establishment of the first UK specialist nursing post dedicated to working with children with undiagnosed genetic conditions and their families. Objectives: (1) To understand what families and hospital staff want from the service; (2) To understand how the post should be operationalized in practice; (3) To develop the job description and person specification for the postholder. Methods: A range of approaches were used to collect data: interviews (nine parents and 10 hospital staff); a focus group (three parents); a creative workshop (six patients and siblings); and an online forum (81 parents). Data were analyzed using framework and thematic analysis. The strands of data were brought together and reviewed as a whole to formulate the postholder's job description and person specification. Results: Stakeholders identified nine key elements to the role which were incorporated into the job description: practical support; point of contact; community liaison; signposting to other services; care coordination; supporting families; advocacy; raising awareness; and emotional support. Conclusions: Highlighted in this paper are the practical aspects of engaging and involving all relevant stakeholders in the process of co‐designing a new post and subsequent staff recruitment. The flexibility employed in the setting and methods of data collection were instrumental in ensuring that the views of a diverse range of participants were ascertained. A major consideration is the resources required to undertake co‐design, in terms of time and finances. We believe that the resources required for the co‐design are offset by the advantages of having the right person in the right post, doing the right job. [ABSTRACT FROM AUTHOR]

Background: Opioids are one of the most prescribed treatments for chronic pain (CP). However, their long‐term use (>3 months) has been surrounded by controversy, due to loss of beneficial effects. Objective: To explore the experiences of people with chronic non‐malignant low back pain in Spain undergoing long‐term treatment with opioids. Design: Qualitative study. Setting and participants: We conducted 15 semi‐structured interviews at the Pain Clinic with persons taking opioid treatment. Methods: The interviews were analysed by qualitative content analysis as described by Graneheim and Lundman, and developed categories and themes discussed in light of a biomedicalization framework. Main results: We developed one overarching theme—Living with opioids: dependence and autonomy while seeking relief—and three categories: The long pathway to opioids due to the invisibility of pain; Opioids: from blind date to a long‐term relationship; and What opioids cannot fix. Discussion: The long and difficult road to find effective treatments was a fundamental part of coping with pain, involving long‐term relationships with the health system. This study reflects the benefits, and drawbacks of opioids, along with struggles to maintain autonomy and make decisions while undergoing long‐term treatment with opioids. The paper also highlights the consequences of pain in the economy, family and social life of patients. Conclusions: Patients' experiences should be considered to a greater extent by health‐care professionals when giving information about opioids and setting treatment goals. Greater consideration of the social determinants of health that affect CP experiences might lead to more effective solutions to CP. [ABSTRACT FROM AUTHOR]

Context: Transitions of patient care responsibility occur frequently between physicians. Resultant discontinuities make it difficult for physicians to observe clinical outcomes. Little is known about what physicians do to overcome the practical challenges to learning these discontinuities create. This study explored physicians’ activities in practice as they sought follow‐up information about patients. Methods: Using a constructivist grounded theory approach, semi‐structured interviews with 18 internal medicine hospitalist and resident physicians at a single tertiary care academic medical center explored participants’ strategies when deliberately conducting follow‐up after they transitioned responsibility for patients to other physicians. Following open coding, the authors used activity theory (AT) to explore interactions among the social, cultural and material influences related to follow‐up. Results: The authors identified three themes related to follow‐up: (i) keeping lists to track patients, (ii) learning to create tracking systems and (iii) conducting follow‐up. Analysis of participants' follow‐up processes as an activity system highlighted key tensions in the system and participants’ work adaptations. Tension within functionality of electronic health records for keeping lists (tools) to find information about patients’ outcomes (object) resulted in using paper lists as workarounds. Tension between paper lists (tools) and protecting patients’ health information (rules) led to rule‐breaking or abandoning activities of locating information. Finding time to conduct desired follow‐up produced tension between this and other activity systems. Conclusion: In clinical environments characterised by discontinuity, lists of patients served as tools for guiding patient care follow‐up. The authors offer four recommendations to address the tensions identified through AT: (i) optimise electronic health record tracking systems to eliminate the need for paper lists; (ii) support physicians’ skill development in developing and maintaining tracking systems for follow‐up; (iii) dedicate time in physicians’ work schedules for conducting follow‐up; and (iv) engage physicians and patients in determining guidelines for longitudinal tracking that optimise physicians’ learning and respect patients’ privacy. [ABSTRACT FROM AUTHOR]

Introduction: Employment of occupational therapists in generic roles in public mental health services (PMHSs) constrains capacity to undertake discipline‐specific activity meaning consumers may be unable to access valuable occupational therapy assessments and interventions that could promote recovery. Establishing a dedicated occupational therapy clinic has been identified as one way of improving care provided and outcomes for organisations, therapists, and consumers. To inform such developments, this paper reports evaluation of feasibility, acceptability, and sustainability of a pilot clinic established within a PMHS. Methods: An observational evaluation was used combining quantitative and qualitative data collected from service documents, clinic records, and in semi‐structured interviews with 42 stakeholders. Quantitative data were used to describe referrals and flow through the clinic. Framework analysis of qualitative data examined the process and outcomes of referrals and enabled understanding of acceptability, perceived impact and areas for improvement. Results: Substantial ground work, particularly stakeholder engagement, and redistribution of resources enabled establishment and successful operation of an assessment clinic for 12 months. Assessments were completed for 68% of the 100 accepted referrals, with the remainder in process or unable to be completed. Stakeholders agreed that the clinic enabled clinicians' timely access to specialist assessment, improving care for consumers. Occupational therapists valued the opportunity to deploy and develop discipline‐specific skills and when there was some impact on work flow of occupational therapists' 'home teams', team managers judged the investment worthwhile. Strong leadership by the discipline lead and support from team managers who enabled allocation of occupational therapists to the clinic were critical to success. Conclusion: An occupational therapy assessment clinic can be established and operate successfully within a public mental health setting. Redistribution of resources supported increased efficiency and consumer access to specialist interventions that support their recovery. [ABSTRACT FROM AUTHOR]

This paper draws on the work of Giorgio Agamben to understand how the social organisation of care transitions can reduce people to their 'bare' life thereby making harmful and degrading treatment seemingly legitimate. The findings of a 2‐year ethnographic study show how some people experience hospital discharge as undignified, inhumane and unsafe process, expressed through their lack of involvement in care planning, delayed discharge from hospital and poorly coordinated care. Our analysis explores how these experiences stem from the way patients are constituted as 'unknown' and 'ineligible' subjects and, in turn, how professionals become 'not responsible' for their care. The result being that the person is reduced to their 'bare' life with limited value within the care system. We suggest that the social production of 'bare life' is an inadvertent consequence of reconciling and aligning multiple disciplines within a complex care system. [ABSTRACT FROM AUTHOR]

Moving away from paternalism to more equal forms of interaction in the patient–doctor relationship has been seen in positive light by policymakers, patients' rights advocates and scholars alike. Nonetheless, against the background of commercialisation and consumerism, empirical research showcases how reduced asymmetries bring in tensions and friction between patients and doctors (Greenfield et al. 2012). This paper contributes to the discussion through the examination of the patient–doctor relationship in the niche setting of private transnational healthcare markets which involve patients travelling overseas for care and where commodification, consumerism and care go hand‐in‐hand. It is geographically focused on two large cities in South‐Eastern Europe as settings where health care is provided to foreign patients – Athens and Istanbul – and empirically draws on qualitative interviews with doctors who run small/medium practices. The findings highlight that, despite excessive consumerism, power asymmetries are not mitigated but patient vulnerability shapes the patient–doctor relationship. In the transnational context, the patient faces an additional source of vulnerability: a condition of foreignness. As such, the findings stress that one relationship model (the consumerist) does not, per se, replace an older one (e.g. the Parsonian). Instead, the consumer–provider dimension co‐exists with the client–expert, patient–doctor and, finally, host–guest relation. [ABSTRACT FROM AUTHOR]

Reducing and eliminating the use of restrictive practices, such as seclusion and restraint, is a national priority for Australia's mental health services. Whilst legislation, organization and practice changes have all contributed to a reduction in these practices, forensic mental health services continue to report high rates. This paper details the findings of research that examined the experiences of nurses working in the inpatient forensic mental health setting. The research aimed to (i) document the experiences of nurses working in the forensic mental health setting, (ii) articulate their perceived unique skill set to manage challenging patient behaviours, and (iii) determine how their experiences and skill set can inform practice changes to reduce the use of restrictive practices. Thirty‐two nurses were recruited from one Australian forensic mental health service. Data were collected using semi‐structured interviews and analysed using inductive content analysis. Four categories were identified that influenced practice experiences: (i) working in a challenging but interesting environment, (ii) specialty expertize, (iii) exposure to aggression and resilience as a protective factor, and (iv) the importance of effective teamwork and leadership. Forensic mental health care is complex, highly specialized, and often delivered in an unpredictable environment. Whilst high rates of restrictive practices may be linked to the unique characteristics of forensic patients, training, teamwork, and leadership are critical factors influencing their use in this setting. Nurses working in this area need to be educated and supported to work confidently and safely with this high‐risk patient cohort. [ABSTRACT FROM AUTHOR]

The needs of refugees are of crucial concern internationally. Relational trauma is an area that is particularly under‐emphasised and under‐researched. The Strength to Strength program (STS) was a relationship and family counselling service for recently arrived refugees in Sydney, Australia. The service model built on post‐Milan systemic family therapy principles to include cultural and trauma‐informed aspects of care. This study explored the design and impact of the program, through qualitative accounts provided by service users. This paper focuses on the experiences of staff of the program, and the ways in which more traditional, Western‐informed modes of family therapy were transformed by refugee client needs. The specific study aim was to identify and describe transformations to the delivery of relationship and family counselling with refugees that enabled care, from the perspective of STS staff. A thematic analysis of interviews with STS service staff (bicultural workers, family therapists, managers; n = 10) was undertaken, guided by an interpretive description framework. Findings revealed that acceptable and useful clinical innovations to standard care included the use of community groups, the unique role of the bicultural worker, and increased reliance on more directive and practical modes of family therapy rather than insight‐oriented post‐Milan techniques. The role of community‐based intervention to enrich existing Western‐informed models of care for use with refugees was vital. STS was an example of staff‐driven innovation to the therapeutic care of refugee families resettling in a Western country and took into account their unique and complex set of cultural, practical, and psychological client needs. Future service delivery is best guided by the incorporation of multi‐faceted approaches to care that allow for phasing of treatment in line with client culture, needs, and readiness. [ABSTRACT FROM AUTHOR]

Abstract: Background: Adolescents living with chronic conditions often portray themselves as “healthy” online, yet use the Internet as one of their top sources of health information and social communication. There is a need to develop online support programs specific to adolescents with chronic conditions in order to provide a private space to discuss concerns. This paper endeavors to increase our understanding of the online support needs and wants of these adolescents and their interest in and preferences for an online support program. Methods: A qualitative descriptive study using semistructured interviews was completed. Stratified purposive sampling was utilized to ensure a representative sample based on age and diagnosis. English speaking adolescents (aged 12–18 years) diagnosed with a chronic condition were recruited from clinic and inpatient areas across 3 paediatric hospitals in Canada. Results: Thirty‐three participants aged 15.3 ± 1.8 years (64% female) completed the study. The main topics identified were (a) the purpose of current online activity, (b) the benefits and challenges of existing online supports, and (c) a description of ideal online resources. The purpose of online activity was social networking, information, online gaming, and social support. When accessing health information online, participants prioritized websites that were easy to access and understand despite the trustworthiness of the site. The reported benefits and challenges varied across participants with many areas perceived as both a benefit and a challenge. The majority of participants were interested in participating in an online support program that included both accurate disease‐related information and a community of other adolescents to provide social support. Conclusions: Adolescents with chronic conditions are interested in online support that encompasses health information and social support that is flexible and easy to navigate. Findings can be used to develop or adapt existing online support programs for adolescents with chronic conditions to help increase engagement and utilization. [ABSTRACT FROM AUTHOR]

Chronic obstructive pulmonary disease ( COPD) is a progressive illness that changes the lives of patients and their spouses dramatically. The aim of this paper is to show how spouses of COPD patients integrate their tasks as informal carers with their role as spouses and the tensions and challenges involved in this. The study draws on qualitative interviews with spouses of COPD patients, recruited from the patient pool of ambulatory pulmonary services of two hospitals in Oslo, Norway. The spouses described their great efforts to re-establish normality and continuity in their everyday lives. Accomplishing this was a delicate process because they faced several dilemmas in this work. They balanced the need to sustain the independence and integrity of both parties against the need to ensure safety and deal with the progression of the illness. We propose 'biographical we' as a concept that can highlight the great effort spouses put into establishing a sense of continuity in their lives. In times when healthcare policy involves mobilising informal caregiving resources, an awareness of the complexity of caregiving relationships is crucial when developing appropriate support for informal carers. [ABSTRACT FROM AUTHOR]

Some scholars contend that genetic medicine is transforming the experience of illness and the social category of the family - bringing future risks into the present, and potentially strengthening familial biological bonds in light of these shared genetic risks. However, research has shown that genetic information is interpreted and acted upon through a rich repertoire of adaptable social, cultural and familial factors which pre-exist and interact with biomedical knowledge. This paper reports research into families living with Neurofibromatosis Type 1 ( NF1), a highly uncertain condition the manifestation of which can vary considerably also within the same family and, for this reason, has been defined as a 'condition without parameters'. These characteristics make NF1 a particularly informative condition for the examination of family dynamics around genetic information. The study and the methodology are based on the exploration of family networks and allow us to investigate the interrelation of individual and familial constructions of the uncertainty of NF1. This also allows both theoretical and policy claims to be made about the danger of reductionist thinking about the transformative potential of genetic technologies. [ABSTRACT FROM AUTHOR]