Search

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]

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]

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: 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]

Background: Attendance of skilled and experienced professionals at breech births has been associated with a reduction in adverse perinatal outcomes. We aimed to determine whether United Kingdom National Health Service (NHS) sites could reliably provide attendants with OptiBreech training and/or advanced proficiency (intervention feasibility) and consistent care (fidelity) that meets women's needs (acceptability), with low neonatal admission rates (safety) and recruitment adequate to support a clinical trial (trial feasibility). Methods: Mixed methods implementation evaluation was used. Settings were 13 services in England and Wales. Participants were 82 women requesting support for a vaginal breech birth (VBB) at term. Outcomes were descriptively analyzed. Twenty‐one women were interviewed, and transcripts were analyzed using the Theoretical Framework of Acceptability. Iterative analysis informed subsequent interviews and the ongoing process of implementation across sites. Results: Although we initially suggested multidisciplinary teams, actively recruiting Trusts yielded services where VBB care was provided through a dedicated clinic, organized and delivered primarily by a lead midwife who functioned as a specialist. This model achieved 87.5% fidelity with the intervention's goal of ensuring the attendance of OptiBreech‐trained professionals. Neonatal outcomes remained stable, with an admission rate of 5.5%. Women reported care from specialist midwives as highly acceptable, but the model is vulnerable without a strategic effort to develop additional proficient team members. Conclusions: Dedicated clinics coordinated by specialist midwives appear to be an acceptable and feasible implementation strategy to test the safety and effectiveness of proficient team care for VBB in a clinical trial. Back‐up arrangements should be maintained while additional members of the team develop proficiency. [ABSTRACT FROM AUTHOR]

Introduction: Dyad learning occurs when two students work together to acquire new skills and knowledge. Several studies have provided evidence to support the educational rationale for dyad learning in the controlled simulated setting. However, the role of dyad learning in the clinical setting remains uncertain. Unlike the simulated setting, learning in the clinical setting depends on a complex interplay between medical students, doctors, nurses and patients potentially making dyad learning less valuable in clerkships. The objective of this study was to explore how key stakeholders perceive the value of implementing dyad learning during medical students' clinical clerkships. Methods: In a constructivist qualitative study, we conducted 51 semi‐structured interviews with 36 key stakeholders involved in dyad learning, including 10 medical students, 12 doctors, five nurses and nine patients. Data were coded inductively using thematic analysis, then coded deductively using stakeholder theory as a theoretical framework. Results: We found that stakeholders generally perceived the educational impact of dyad learning in the clinical setting similarly but disagreed on its value. Students emphasised that dyad learning made them participate more actively during patient encounters and patients did not mind having two students present. Doctors and nurses considered dyad learning disruptive to the balance between service and training and reported that it did not resonate with their perception of good patient care. Conclusion: Dyad learning enables students to be more active during their clinical clerkships, but it easily disrupts the balance between service and training. This disruption may be exacerbated by the shifted balance in priorities and values between different stakeholder groups, as well as by making implicit teaching obligations more explicit for supervising doctors and nurses. Consequently, implementing dyad learning may not be perceived as valuable by doctors and nurses in the clinical setting, regardless of its pedagogical rationale. The authors demonstrate that collaborative learning between pairs of medical students is perceived and valued differently by different stakeholders in the clinical setting, particularly with respect to tge patient perspective. [ABSTRACT FROM AUTHOR]

The aim of the study was to understand the perspectives of mental health consumers, staff, and yoga teachers on the characteristics of a yoga‐based intervention to be developed for consumers with a long‐term mental health condition, in addition to anxiety and/or depression. Two focus groups were held with mental health consumers (n = 8), two focus groups with mental health staff (n = 13) from a metropolitan community mental health setting, and five one‐on‐one interviews with yoga teachers. Participants were asked about the feasibility and appropriateness of a range of yoga practice features to be tested as a newly developed yoga‐based intervention. Thematic analysis was used to identify themes. Findings included the following consumer themes: Mental health understanding and experience of teachers and participants is important, Creating a safe space and Yoga practice elements. Staff themes included Mental health understanding and experience of teachers is important, Environmental design, and Yoga practice elements. Yoga teacher themes included Environmental design and Yoga practice elements. Mental health understanding and experience of the yoga teacher, and trauma‐informed care were consistently emphasized by consumers and staff. Teachers focused less on specific mental health considerations, which may be reflective of a broader knowledge gap. Recommendations regarding yoga practice elements, including pre‐information, regular and consistent practice, modifications, breathwork, mindfulness and guided practice, and environmental design features, were consistent with current trauma‐informed yoga research. Findings will be used to guide the development of a yoga‐based intervention for consumers with a long‐term mental health condition, in addition to anxiety and/or depression. [ABSTRACT FROM AUTHOR]

OBJECTIVE: Healthcare organizations are expanding community‐based serious illness care programs to deliver care for homebound patients. Programs typically focus on home‐based primary care or home‐based palliative care, yet this population may require both services. We developed and evaluated a primary and palliative care program serving seriously ill older adults, called the Reaching Out to Enhance the Health of Adults in Their Communities and Homes (REACH) program. Our objective was to determine the impact of the REACH program on healthcare utilization and the patient care experience. DESIGN: Case study using medical record review and telephone interviews. SETTING: Home‐based serious illness care program in central North Carolina. PARTICIPANTS: Patients enrolled in the REACH program from August 2014 to March 2016 (n = 159). INTERVENTION: Home‐based primary and palliative care delivered by an interdisciplinary team for seriously ill older adults. MEASUREMENTS: Structured medical record review including demographics, health and functional status, and acute hospitalization and emergency department (ED) visits in the 12 months preceding and following initiation of the REACH program. A convenience sample of participants completed telephone interviews that measured the quality‐of‐care experience and quality of communication. RESULTS: REACH patients had a 43% reduction in hospital visits and a 25% reduction in ED visits. Participants in telephone interviews reported a high‐quality care experience and very good quality of communication with REACH providers. CONCLUSION: A care model that integrates home‐based primary care and palliative care has the potential to reduce health service utilization and enhance the care experience for older patients with serious illness. J Am Geriatr Soc 67:825–830, 2019. [ABSTRACT FROM AUTHOR]

To reduce the use and duration of mechanical restraint in forensic settings and ensure evidence‐based patient care, we need more knowledge about patients' subjective experiences and perceptions. The aim was to investigate forensic psychiatric patients' perceptions of situations associated with the use of mechanical restraint and what they perceive as factors impacting the use and duration of mechanical restraint. Twenty participants were interviewed. Four themes were identified through a thematic analysis: 'overt protest reactions', 'silent protest reactions', 'illness‐related behaviour', and 'genuinely calm', which together characterize patients' perceptions of their ways of acting and reacting during mechanical restraint episodes. These themes are linked together in two patterns in the process of mechanical restraint: 'pattern of protest' and 'pattern of illness'. Further research is needed to illuminate the associations between patients' perceptions of being subjected to mechanical restraint and ways of acting and reacting through the process of mechanical restraint. [ABSTRACT FROM AUTHOR]

Background: The impact of long‐term conditions is the "healthcare equivalent to climate change." People with long‐term conditions often feel they are a problem, a burden to themselves, their family and friends. Providers struggle to support patients to self‐manage. The Practical Reviews in Self‐Management Support (PRISMS) taxonomy lists what provider actions might support patient self‐management. Objective: To offer providers advice on how to support patient self‐management. Design: Semi‐structured interviews with 40 patient‐participants. Setting and participants: Three case studies of primary health‐care organizations in New Zealand and Canada serving diverse populations. Participants were older adults with long‐term conditions who needed support to live in the community. Main outcome measures: Qualitative description to classify patient narratives of self‐management support according to the PRISMS taxonomy with thematic analysis to explore how support was acceptable and effective. Results: Patients identified a relationship‐in‐action as the mechanism, the how by which providers supported them to self‐manage. When providers acted upon knowledge of patient lives and priorities, these patients were often willing to try activities or medications they had resisted in the past. Effective self‐management support saw PRISMS components delivered in patient‐specific combinations by individual providers or teams. Discussion and conclusions: Providers who establish relationships with patients can support them to self‐manage and improve health outcomes. Delivery of taxonomy components, in the absence of a relationship, is unlikely to be either acceptable or effective. Providers need to be aware that social determinants of health can constrain patients' options to self‐manage. [ABSTRACT FROM AUTHOR]

Nursing students, regardless of setting, require skills in working with people with mental health issues. One way to provide students with learning opportunities within the context of limited undergraduate mental health content and lack of mental health placements is through employment as assistants in nursing (AIN). The purpose of the study was to investigate the use of AINs employed in an emergency department in South Australia to supervise (continuous observation) mental health consumers on inpatient treatment orders. Twenty-four participants took part in the study, with AINs (n = 8, all studying in an undergraduate nursing programme), nurse managers (n = 5), and nurses (n = 11) participating in semi-structured interviews. Data were analysed using thematic analysis. Themes focused on (i) the AIN role, their practice, boundaries or restrictions of their role, and the image consumers have of AINs; (ii) learning through experience, where the AIN role was a practical opportunity to learn and apply knowledge obtained through university studies; and (iii) support, which focused on how AINs worked with nursing staff as part of the healthcare team. Overall, participants believed that AINs played an important role in the ED in supervising consumers on involuntary mental health treatment orders, where their unique role was seen to facilitate more positive consumer experiences. The AIN role is one way for nursing students to develop skills in working with people with mental health issues. [ABSTRACT FROM AUTHOR]

Abstract: Low back pain is a considerable health problem which affects people around the world, causing major healthcare costs. The use of qualitative research methods enables us to describe and understand patients’ experience of, and attitudes to, healthcare. The aim of the present phenomenographic study was to identify and describe the contextual nature of the conceptions of patients with low back pain of their encounters in the HCS. Seventeen patients with chronic or episodic low back pain classified as “high risk” were interviewed in open recall interviews, using videos of patients’ initial physiotherapy sessions that had been recorded previously. The data were analysed using the phenomenographic method. Patients’ conceptions of their clinical journey were formulated by a variety of themes: convincing care, lifestyle change, participation, reciprocality and ethicality of encounters. The themes varied in four categories: “non‐encounters”, seeking support, empowering collaboration and autonomic agency. The results showed a range of clinical interactions – from very negative and disempowering, to empowering and life changing. The key differences between the first and second categories were professionals “being present” and patients starting to understand their low back pain. Between the second and third category, the key aspects were strong therapeutic alliance and the active participation of the patient. Finally, the key differences between the third and fourth categories were the patient being in charge and taking responsibility while knowing that help was available if required. The results may help in improving the care of patients with low back pain. [ABSTRACT FROM AUTHOR]

Aims and objectives: The aim of the present study was to evaluate client‐centred care in older persons' home care services from the perspective of older persons and family members. The following research questions were addressed: How do home care older persons and family members perceive client‐centered care in their home care services? What kind of social mechanisms are realized when home care services are implemented? Background: Several older persons are dependent on home care services for their continued living at home. The fundamental value and best practice of home care is the client‐centred care in services. Method: The research method was realistic evaluation. Six families with six older person clients of home care and seven family members were interviewed. In the present study, the interview contained three themes (1) content and services of the home care, (2) activities and practices of the home care and (3) development of client centredness in home care. Research data were analysed with deductive content analysis. Results: Home care service should be based on analysis of older person's individual life situation. Social mechanisms such as interaction, participation, trust and adaptation are realised in implementation of home care services. The most significant outcomes of client‐centred service were timely availability of services, safe care relationship and continuity of care, ability to influence on own services and appropriate price of services. Significant factors in quality of service were unhurriedness, kindness and competence of professionals. Implication for practice: Social mechanisms, such as participation, trust, adaptation and interaction, should be taken in account in care relationship in home care. Client centredness and methods for evaluating it should be defined in practical work. Client‐centeredness competence should also be included in all stages of professional education of home care. [ABSTRACT FROM AUTHOR]