Not Just Dyspnoea: Swallowing as a Concern for Adults with Laryngotracheal Stenosis Undergoing Airway Reconstruction

AbstractAcquired laryngotracheal stenosis (LTS) is a rare condition causing dyspnea and stridor. Patients often require multiple surgical procedures with no guarantee of a definitive outcome. Difficulty swallowing is a recognised problem associated with LTS and the reconstructive surgeries required to manage the condition. The breathlessness patient’s experience impacts on swallowing, and the vulnerable structures of the larynx are implicated during complex surgeries. This leads to dysphagia post-surgery, with some patients experiencing more chronic symptoms depending on the biomechanical impact of the surgery, or a pre-existing dysphagia. Despite this there is limited observational research about the dysphagia associated with LTS, with no exploration of the patient experience. Our aim was to investigate patient experience of living with LTS focussing on dysphagia in order to guide clinical practice. A qualitative study was completed using focus groups and semi-structured interviews with 24 patients who have had reconstructive surgery for LTS. Thematic analysis was used to identify three over-arching themes: The Physical Journey, The Emotional Journey and The Medical Journey. Key sub-themes included the importance of self-management and control, presence of symptoms, benefits of therapy, living with a life-long condition, fear and anxiety, autonomy, medicalisation of normal processes and the dichotomy between staff expertise and complacency. Swallowing was connected to all themes. The results are reviewed with consideration of the wider literature of lived experience particularly in relation to other chronic conditions and those that carry a high symptom burden such as head and neck cancer. Future clinical and research recommendations have been made. Akin to other clinical groups, adults with LTS are keen that management of their swallowing is person-centred and holistic.

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An Exploration of the Patient Lived Experience of Remission and Relapse of Type 2 Diabetes Following Bariatric Surgery

Obesity Surgery ◽

10.1007/s11695-021-05514-7 ◽

2021 ◽

Author(s):

Alexis C. Sudlow ◽

Dimitri J. Pournaras ◽

Helen Heneghan ◽

Zsolt Bodnar ◽

Carel W. le Roux ◽

...

Keyword(s):

Type 2 Diabetes ◽

Bariatric Surgery ◽

Lived Experience ◽

Patient Experience ◽

Healthcare Professionals ◽

Structured Interviews ◽

Disease Remission ◽

Obesity Stigma ◽

Self Worth

Abstract Background Bariatric surgery is the most effective treatment for patients with obesity and type 2 diabetes (T2DM), inducing profound metabolic changes associated with improvements in glycaemic control. In spite of the recognition of the physiological changes associated with bariatric surgery, what remains underappreciated is the patient experience of surgery to treat T2DM. Objectives This study explored the patient experience with regard to motivations, expectations and outcomes, including remission and relapse of diabetes. Methods An in-depth qualitative approach was adopted, encompassing semi-structured interviews with patients (n=17) living with obesity and T2DM both pre- and postsurgery. Interpretive thematic analysis identified emergent themes using a grounded approach. Results Analysis revealed a number of themes throughout the interviews which included motivations and perceived benefits of surgery, obesity stigma and its impact on self-worth as well as perceptions of remission or relapse and the implications for sense of control. Conclusions The motivation for undergoing bariatric surgery was driven by health concerns, namely T2DM and the desire to reduce the risk of developing diabetes-related complications. Patients highlighted social and self-stigmatisation associated with obesity and T2DM, leading to feelings of shame and an inability to seek support from family or healthcare professionals. Stigmatisation created a sense of failure and feeling of guilt for having T2DM. As a result, patients felt responsible for maintaining disease remission postoperatively and regarded the need for medication as a sign of treatment failure.

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User testing a patient information resource about potential complications of vaginally inserted synthetic mesh

BMC Women s Health ◽

10.1186/s12905-020-01166-4 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Nikolina Angelova ◽

Louise Taylor ◽

Lorna McKee ◽

Naomi Fearns ◽

Tracey Mitchell

Keyword(s):

Lived Experience ◽

Patient Information ◽

Pelvic Organ ◽

Synthetic Mesh ◽

Information Resource ◽

User Testing ◽

Structured Interviews ◽

Convenience Sample ◽

Asking Questions ◽

Direct Guidance

Abstract Background Vaginal mesh implants are medical devices used in a number of operations to treat stress urinary incontinence and pelvic organ prolapse. Although many of these operations have delivered good outcomes, some women have experienced serious complications that have profoundly affected their quality of life. To ensure that evolving patient information is up-to-date, accurate and appropriate, the Transvaginal Mesh Oversight Group ‘user-tested’ a newly developed Scottish patient resource, the first to focus exclusively on the issue of complications. The aim of this research was to gather feedback on usability, content, language and presentation to inform the development of the resource from a user perspective. Methods The experience of using the patient resource was captured through semi-structured interviews that followed a ‘think-aloud’ protocol. The interviewer observed each participant as they went through the resource, asking questions and making field notes. Participants’ comments were then categorised using a validated model of user experience and subsequently analysed thematically. Results Thirteen people participated in the user testing interviews, including women with lived experience of mesh implants (n = 7), a convenience sample of staff working for Healthcare Improvement Scotland (n = 5) and a patient’s carer (n = 1). The majority of participants considered the resource as clear and helpful. Respondents reported that some presentational aspects promoted usability and understandability, including the use of a font that is easy to read, bullet lists, coloured headings and simple language. Barriers included the reliance on some technical language and an explicit anatomical diagram. Participants endorsed the valuable role of health professionals as co-mediators of patient information. Conclusions The findings illustrate the value of undertaking in-depth user-testing for patient information resources before their dissemination. The study highlighted how the direct guidance or navigation of a patient information resource by a health professional could increase its salience and accuracy of interpretation by patients, their families and carers. These insights may also be useful to other developers in improving patient information.

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Risk perception on the labour ward: A mixed methods study

Journal of Patient Safety and Risk Management ◽

10.1177/25160435211002428 ◽

2021 ◽

Vol 26 (2) ◽

pp. 56-63

Author(s):

Claire McCarthy ◽

Sarah Meaney ◽

Marie Rochford ◽

Keelin O’Donoghue

Keyword(s):

Mixed Methods ◽

Lived Experience ◽

Healthcare Providers ◽

Emergency Obstetric Care ◽

Obstetric Care ◽

Daily Basis ◽

Mixed Methods Study ◽

Structured Interviews ◽

Staff Support ◽

Staff Wellbeing

Healthcare providers commonly experience risky situations in the provision of maternity care, and there has been increased focus on the lived experience in recent years. We aimed to assess opinions on, understanding of and behaviours of risk on the LW by conducting a mixed methods study. Staff working in a LW setting completed a descriptive questionnaire-based study, followed by qualitative structured interviews. Statistical analysis was performed with SPSS on quantitative data and thematic analysis performed on qualitative data. Nearly two thirds of staff (64%; 73/114) completed the questionnaire, with 56.2% (n = 47) experiencing risk on a daily basis. Experiencing risk evoked feelings of apprehension (68.4%; n = 50) and worry (60.2%; n = 44) which was echoed in the qualitative work. Structured clinical assessment was utilised in risky situations, and staff described “ going on autopilot” to manage these situations. A large number of respondents reflected on their provision of care following an adverse event (87.7%; n = 64). Debriefing was mentioned as an important practice following such events by all respondents. This study describes the negative terminology prevailing in emergency obstetric care. These experiences can have a profound impact on staff. Risk reduction strategies and the provision of increased staff support and training are crucial to improve staff wellbeing in stressful scenarios.

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Rural Aboriginal high school students' views of their future tertiary education

The Australian Journal of Indigenous Education ◽

10.1017/jie.2020.32 ◽

2020 ◽

pp. 1-11

Author(s):

Jessica Howard ◽

Jacob Jeffery ◽

Lucie Walters ◽

Elsa Barton

Keyword(s):

High School ◽

High School Students ◽

Lived Experience ◽

Educational Outcomes ◽

Educational Aspirations ◽

Tertiary Education ◽

Structured Interviews ◽

School Students ◽

Aboriginal Australians ◽

Relationship Networks

Abstract In the context of a stark discrepancy in the educational outcomes of Aboriginal Australians compared to non-Aboriginal Australians, this article aims to contribute the voices of rural Aboriginal high school students to the discourse. This article utilises an appreciative enquiry approach to analyse the opinions and aspirations of 12 Aboriginal high school students in a South Australian regional centre. Drawing on student perspectives from semi-structured interviews, this article contributes to and contextualises the growing body of literature regarding educational aspirations. It demonstrates how rurality influences a complex system of intrinsic attributes, relationship networks and contextual factors. It offers an important counterpoint to discourses surrounding academic disadvantage and highlights the lived experience of rural Aboriginal Australians.

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Living with Heart Failure during the COVID-19 Pandemic: An Interpretative Phenomenological Analysis

Clinical Nursing Research ◽

10.1177/10547738211016614 ◽

2021 ◽

pp. 105477382110166

Author(s):

Alessia Martina Trenta ◽

Davide Ausili ◽

Rosario Caruso ◽

Cristina Arrigoni ◽

Massimo Moro ◽

...

Keyword(s):

Heart Failure ◽

Coping Strategies ◽

Lived Experience ◽

Interpretative Phenomenological Analysis ◽

Phenomenological Analysis ◽

Structured Interviews ◽

Hospital Organization ◽

Challenging Situation ◽

And Coping ◽

Negative Feelings

This study aimed to explore lived experience of patients with heart failure (HF) during the COVID-19 pandemic. A qualitative study was conducted using an interpretative phenomenological analysis (IPA). Data collection performed in March-May 2020, using in-depth, semi-structured interviews on a purposive sample. Data were analyzed according to the IPA methodology, and triangulation, bracketing, journaling, and member checking were used to assure rigor. 14 patients with HF were enrolled, and three main themes described their lived experience during the COVID-19 pandemic: Vulnerability, Hanging in the balance, and Coping strategies. These people felt particularly vulnerable to the novel virus and experienced uncertainty due to hospital organization changes. Because of this, they felt like they were hanging in the balance, experiencing various negative feelings. Nevertheless, they managed to deal with this challenging situation by implementing some peculiar coping strategies. The COVID-19 represents a significant challenge for patients with HF, impacting significantly on their lives.

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‘Don’t Put the Cart before the Mule!’ Challenging Assumptions Regarding Health-Related Treatment Practices of Working Equid Owners in Northern India

Animals ◽

10.3390/ani11051307 ◽

2021 ◽

Vol 11 (5) ◽

pp. 1307

Author(s):

Caroline Nye ◽

Tamlin Watson ◽

Laura M. Kubasiewicz ◽

Zoe Raw ◽

Faith Burden

Keyword(s):

Decision Making ◽

Lived Experience ◽

Health Management ◽

Animal Health ◽

Structured Interviews ◽

Treatment Practices ◽

Northern India ◽

Brick Kilns ◽

Treatment Measures ◽

Working Equids

This paper challenges assumptions that the health management of working equids among some of India’s poorest communities is mainly dependent upon income, economic influence, or access to veterinary services. Using a mixed-methods approach, hierarchies of treatment practices are revealed through an examination of the ‘lived experience’ of equid owners in brick kilns and construction sites in northern India. Semi-structured interviews with 37 equid owners and corresponding livelihood surveys, combined with data from two focus groups with professional animal health practitioners and the welfare data of 63 working equids collected using the Equid Assessment, Research, and Scoping (EARS) tool, contributed to the findings of the study. Four principal influencing factors were found to affect the decision-making practices of equid owners. Infrastructural factors, community characteristics and experience, owners’ characteristics and experience, and economic factors all impact the belief structures of equid owners. However, without verifying the validity of the treatment measures being employed, some animals are at risk from hazardous treatment behaviours. By understanding decision-making using the theory of planned behaviour, the findings of this study can provide a crucial contribution to informing future interventions involved in the health management and welfare of working equids.

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Health(care) in the Crisis: Reflections in Science and Society on Opioid Addiction

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18010341 ◽

2021 ◽

Vol 18 (1) ◽

pp. 341

Author(s):

Roxana Damiescu ◽

Mita Banerjee ◽

David Y. W. Lee ◽

Norbert W. Paul ◽

Thomas Efferth

Keyword(s):

Chronic Pain ◽

Lived Experience ◽

Narrative Analysis ◽

Opioid Abuse ◽

Societal Implications ◽

Public Health Approach ◽

Opioid Misuse ◽

Post Surgery ◽

Patient Narratives ◽

The Relationship

Opioid abuse and misuse have led to an epidemic which is currently spreading worldwide. Since the number of opioid overdoses is still increasing, it is becoming obvious that current rather unsystematic approaches to tackle this health problem are not effective. This review suggests that fighting the opioid epidemic requires a structured public health approach. Therefore, it is important to consider not only scientific and biomedical perspectives, but societal implications and the lived experience of groups at risk as well. Hence, this review evaluates the risk factors associated with opioid overdoses and investigates the rates of chronic opioid misuse, particularly in the context of chronic pain as well as post-surgery treatments, as the entrance of opioids in people’s lives. Linking pharmaceutical biology to narrative analysis is essential to understand the modulations of the usual themes of addiction and abuse present in the opioid crisis. This paper shows that patient narratives can be an important resource in understanding the complexity of opioid abuse and addiction. In particular, the relationship between chronic pain and social inequality must be considered. The main goal of this review is to demonstrate how a deeper transdisciplinary-enriched understanding can lead to more precise strategies of prevention or treatment of opioid abuse.

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Patient’s experience of psoriatic arthritis: a conceptual model based on qualitative interviews

RMD Open ◽

10.1136/rmdopen-2020-001321 ◽

2020 ◽

Vol 6 (3) ◽

pp. e001321

Author(s):

Alexis Ogdie ◽

Kaleb Michaud ◽

Miroslawa Nowak ◽

Rachel Bruce ◽

Sarah Cantor ◽

...

Keyword(s):

Psoriatic Arthritis ◽

Conceptual Model ◽

Patient Experience ◽

Qualitative Interviews ◽

Signs And Symptoms ◽

Structured Interviews ◽

Skin Symptoms ◽

Patient’S Experience ◽

Significant Burden

IntroductionPsoriatic arthritis (PsA) is a heterogeneous chronic inflammatory musculoskeletal disorder that manifests as peripheral arthritis, dactylitis, enthesitis and spondylitis. PsA results in significant burden that impacts quality of life of patients. We examined the signs, symptoms and impacts reported by patients with PsA, to characterise the patient experience of PsA and develop a conceptual model representing this patient experience.MethodsSemi-structured interviews were conducted with patients with PsA recruited through the FORWARD databank. Spontaneous and probed signs, symptoms and impacts of PsA were assessed. Patients rated the disturbance of these concepts on their lives using a scale from 0 (‘does not disturb’) to 10 (‘greatly disturbs’). Signs, symptoms and impacts reported by >80% of patients with a disturbance rating of ≥5 were defined as salient concepts. Recruitment continued until concept saturation was achieved.Results19 patients with PsA were interviewed. The interviews elicited 42 symptoms of which 8 had not been identified in a previous literature review encompassing 15 relevant articles. The most salient signs and symptoms elicited in the interviews were joint pain, skin symptoms, stiffness, swollen/inflamed joints and fatigue all with moderate to high disturbance ratings (range: 5.5–7.8). The most salient impacts were sleep disturbance, physical disability, effects on daily activities and feelings of frustration with also moderate to high disturbance ratings (range: 6.1–7.4).ConclusionsThe interviews highlighted the adverse impact PsA has on the patient’s life and may inform on outcome variables or areas suitable to be assessed in PsA studies.

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Recovery colleges: long-term impact and mechanisms of change

Mental Health and Social Inclusion ◽

10.1108/mhsi-01-2021-0002 ◽

2021 ◽

Vol ahead-of-print (ahead-of-print) ◽

Author(s):

Holly Thompson ◽

Laura Simonds ◽

Sylvie Barr ◽

Sara Meddings

Keyword(s):

Mental Health ◽

Lived Experience ◽

Positive Impact ◽

Evidence Base ◽

College Attendance ◽

Personal Recovery ◽

Structured Interviews ◽

Content Type ◽

Educational Paradigm ◽

Long Term Impact

Purpose Recovery Colleges are an innovative approach which adopt an educational paradigm and use clinician and lived experience to support students with their personal recovery. They demonstrate recovery-orientated practice and their transformative role has been evidenced within mental health services. The purpose of this study is to explore how past students understand the influence of the Recovery College on their on-going recovery journey. Design/methodology/approach An exploratory, qualitative design was used and semi-structured interviews took place with 15 participants. Data was analysed using the “framework method” and inductive processes. Findings All participants discussed gains made following Recovery College attendance that were sustained at one year follow-up. Three themes emerged from the data: Ethos of recovery and equality; Springboard to opportunities; and Intrapersonal changes. Originality/value This research explores students’ experiences a year after attendance. This contrasts to most research which is completed immediately post course. This study contributes to the emergent evidence base highlighting the longitudinal positive impact of Recovery Colleges. This study is of value to those interested in recovery-oriented models within mental health. Recovery Colleges are gaining traction nationally and internationally and this research highlights processes underlying this intervention which is of importance to those developing new Recovery Colleges.

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The role of family adaptation in the transition to adulthood for youth with medical complexity: a qualitative case study protocol

Journal of Transition Medicine ◽

10.1515/jtm-2021-0005 ◽

2021 ◽

Vol 0 (0) ◽

Author(s):

Lin Li ◽

Nancy Carter ◽

Jenny Ploeg ◽

Jan Willem Gorter ◽

Patricia H. Strachan

Keyword(s):

Lived Experience ◽

Transition To Adulthood ◽

Evidence Base ◽

Adult Health ◽

Structured Interviews ◽

Adult Services ◽

Development Framework ◽

Medical Complexity ◽

Life Course Health

Abstract Background For youth with medical complexity and their families, the transition to adulthood is a stressful and disruptive period that is further complicated by the transfer from relatively integrated and familiar pediatric services to more fragmented and unfamiliar adult services. Previous studies report that families feel abandoned, overwhelmed, and unsupported during transition. In order to provide better support to families, we need to understand how families currently manage transition, what supports they need most, and how key factors influence their experiences. The aim of this study is to understand how families of youth with medical complexity adapt to the youth’s transition to adulthood and transfer to adult health care, social, and education services, and to explain how contextual factors interact to influence this process. Methods Informed by the Life Course Health Development framework, this study will use a qualitative explanatory case study design. The sample will include 10–15 families (1–3 participants per family) of youth with medical complexity (aged 16–30 years) who have lived experience with the youth’s transition to adulthood and transfer to adult services. Data sources will include semi-structured interviews and resources participants identified as supporting the youth’s transition. Reflexive thematic analysis will be used to analyze interview data; directed content analysis will be used for documentary evidence. Discussion While previous studies report that families experience significant challenges and emotional toll during transition, it is not known how they adapt to these challenges. Through this study, we will identify what is currently working for families, what they continue to struggle with, and what their most urgent needs are in relation to transition. The anticipated findings will inform both practice solutions and policy changes to address the needs of these families during transition. This study will contribute to the evidence base needed to develop novel solutions and advance policies that will meaningfully support successful transitions for families of youth with medical complexity.

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