Stigma and the in(visible) perspectives and expectations of home oxygen therapy among people with chronic breathlessness syndrome: A qualitative study

Background: Chronic breathlessness syndrome in the context of advancing disease is distressing for all concerned. Oxygen is commonly prescribed in this setting; however, little is known about the perspectives of breathless people who either are on oxygen or are yet to have it prescribed. Aim: To understand and describe the perspectives and experiences of breathless people towards oxygen use at home. Design: This qualitative study utilised an interpretive description approach using semi-structured interviews and thematic analysis. Setting/participants: A total of 19 people with chronic breathlessness syndrome living in South Australia participated in semi-structured interviews. Participants were divided into sub-groups according to whether they were chronically breathless and (1) not using home oxygen ( n = 6), (2) using funded home oxygen for severe hypoxaemia ( n = 7) and (3) using home oxygen for palliation outside of funding guidelines ( n = 6). Results: Three main themes were identified: (1) managing distress and living with chronic breathlessness syndrome, with or without oxygen, requires a range of self-management strategies; (2) expectations of oxygen use: ‘Not as good as I thought it would be’; and (3) the stigma of using oxygen: the visible and invisible. Conclusion: People living with chronic breathlessness struggle daily with both the progression of the underlying disease and the distressing nature of the syndrome. While oxygen does provide benefit for some people, its use and the perceptions of its use are often associated with both the visible and invisible manifestations of stigma. Clinicians need to promote self-management strategies and give careful thought to the prescribing of home oxygen, especially outside the current funding guidelines.

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Using wearables and self-management apps in patients with COPD: a qualitative study

ERJ Open Research ◽

10.1183/23120541.00036-2019 ◽

2019 ◽

Vol 5 (3) ◽

pp. 00036-2019 ◽

Cited By ~ 3

Author(s):

Robert C. Wu ◽

Shiphra Ginsburg ◽

Tatiana Son ◽

Andrea S. Gershon

Keyword(s):

Qualitative Study ◽

Thematic Analysis ◽

Mobile Application ◽

Continuous Monitoring ◽

Healthcare Providers ◽

Self Management ◽

Chronic Obstructive ◽

Structured Interviews ◽

Daily Lives ◽

Obstructive Pulmonary Disease

BackgroundTechnology such as wearable technology and self-management applications could improve the care of patients with chronic obstructive pulmonary disease (COPD) by real-time continuous monitoring, early detection of COPD and improved self-management. However, patients have not been willing to use technology when it is too difficult to use, interferes with their daily lives or threatens their identity, independence and self-care.MethodsWe conducted a qualitative study to determine what patients with COPD would like to see in a wearable device and a mobile application to help manage their condition. Semi-structured interviews were conducted, recorded and transcribed. Thematic analysis was used to identify themes and concepts.ResultsWe interviewed 14 people with COPD with an average age of 69 years. Participants perceived that the technology could improve their ability to manage their condition both in daily life and during exacerbations by connecting how they feel and by knowing their oxygen saturation, heart rate and activity. The technology may help them address feelings of fear and panic associated with exacerbations and may provide reassurance and connectedness. Some people with COPD wanted their healthcare providers to have access to their data, while others were concerned about inundating them with too much information. Of note, people wanted to maintain control of the information; to make connections with the data, but also in order to be alerted when a possible exacerbation occurs.ConclusionPatients perceived significant potential for wearables and apps to help manage their condition.

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Experiences of New Zealand Haemodialysis Patients in Relation to Food and Nutrition Management: A Qualitative Study

Nutrients ◽

10.3390/nu13072299 ◽

2021 ◽

Vol 13 (7) ◽

pp. 2299

Author(s):

Rachael M. McLean ◽

Zhengxiu Xie ◽

Vicky Nelson ◽

Vili Nosa ◽

Hla Thein ◽

...

Keyword(s):

New Zealand ◽

Qualitative Study ◽

Thematic Analysis ◽

Extended Family ◽

Culturally Appropriate ◽

Structured Interviews ◽

Nutrition Management ◽

Healthcare Needs ◽

Food And Nutrition ◽

Major Disruption

People receiving haemodialysis have considerable and complex dietary and healthcare needs, including co-morbidities. A recent New Zealand study has shown that few patients on haemodialysis are able to meet nutritional requirements for haemodialysis. This study aims to describe the perspectives and experiences of dietary management among patients on haemodialysis in New Zealand. This exploratory qualitative study used in-depth semi-structured interviews. Purposive sampling was used to recruit participants from different ethnic groups. Forty interviews were conducted, audio-recorded and transcribed verbatim. An inductive approach was taken using thematic analysis. Forty participants were interviewed. Participants spoke of major disruption to their lives as a result of their chronic kidney disease and being on haemodialysis, including loss of employment, financial challenges, loss of independence, social isolation and increased reliance on extended family. Most had received adequate dietary information, although some felt that more culturally appropriate support would have enabled a healthier diet. These findings show that further support to make the recommended dietary changes while on haemodialysis should focus on socio-cultural factors, in addition to the information already provided.

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Healthcare and Terrorism: The Lebanese Experience

Disaster Medicine and Public Health Preparedness ◽

10.1017/dmp.2021.26 ◽

2021 ◽

pp. 1-4

Author(s):

Nooreddine Iskandar ◽

Tatiana Rahbany ◽

Ali Shokor

Keyword(s):

Public Health ◽

Qualitative Study ◽

Thematic Analysis ◽

Terrorist Attacks ◽

Analysis Method ◽

Structured Interviews ◽

Security Issues ◽

The Face ◽

The Common ◽

First Time

Abstract Background: Due to the common instability caused by political and security issues, Lebanese hospitals have experienced acts of terrorism multiple times. The most recent Beirut Explosion even forced several hospitals to cease operations for the first time in decades—but studies show the preparedness levels for such attacks in similar countries are low. Objective: The aim of this study is to explore the experience of Lebanese hospitals with terrorist attacks. Methods: This qualitative study used semi-structured interviews with various stakeholders to assess their experience with terrorist bombings. Data was analyzed using the thematic analysis method. Results: The researchers found that Lebanese hospitals vary greatly in their structures and procedures. Those differences are a function of 3 contextual factors: location, culture, and accreditation status. Hospitals found near ‘dangerous zones’ were more likely to be aware and to have better response to such events. A severe lack of communication, unity of command, and collaboration between stakeholders has made the process fragmented. Conclusion: The researchers recommend a larger role for the Ministry of Public Health (MOPH) in this process, and the creation of a platform where Lebanese organizations can share their experiences to improve preparedness and resilience of the Lebanese healthcare system in the face of terrorism.

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Telehealth sounds a bit challenging, but it has potential: participant and physiotherapist experiences of gym-based exercise intervention for Achilles tendinopathy monitored via telehealth

BMC Musculoskeletal Disorders ◽

10.1186/s12891-020-03907-w ◽

2021 ◽

Vol 22 (1) ◽

Author(s):

F. Hasani ◽

P. Malliaras ◽

T. Haines ◽

S. E. Munteanu ◽

J. White ◽

...

Keyword(s):

Focus Group ◽

Thematic Analysis ◽

Exercise Intervention ◽

Achilles Tendinopathy ◽

Interpretive Description ◽

Structured Interviews ◽

Potential Participant ◽

Delivery Of Care ◽

Exercise Interventions ◽

Inductive Thematic Analysis

Abstract Background Although telehealth is becoming more popular for delivery of care for individuals with musculoskeletal pain, to our knowledge telehealth has not been used to manage Achilles tendinopathy. This research aimed to explore the experience of participants and physiotherapists with gym-based exercise interventions for Achilles tendinopathy monitored via videoconference. Methods A qualitative, interpretive description design was performed using semi-structured interviews (8 participants) and a focus group (7 physiotherapists). Participants and physiotherapists were interviewed about their experiences of the use of telehealth during a gym-based exercise intervention incorporating different calf load parameters for Achilles tendinopathy. We employed an inductive thematic analysis approach to analyse the data. Results Three themes identified from both participants and physiotherapists included i) acceptability of telehealth; ii) enablers to adherence with telehealth; and iii) barriers to adherence with telehealth. Two extra themes arose from participants regarding adherence with gym-based exercise, including enablers to adherence with the exercise intervention, and barriers to adherence with the exercise intervention. Both participants and physiotherapists expressed overall satisfaction and acceptability of telehealth monitoring of gym-based exercise. Conclusion Gym-based exercise intervention for Achilles tendinopathy involving weekly telehealth monitoring was acceptable to both participants and physiotherapists. Potential enablers and barriers were identified that may improve adherence to this type of intervention.

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Action plans in idiopathic pulmonary fibrosis: a qualitative study—‘I do what I can do’

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2020-002831 ◽

2021 ◽

pp. bmjspcare-2020-002831

Author(s):

Meena Kalluri ◽

Sarah Younus ◽

Nathan Archibald ◽

Janice Richman-Eisenstat ◽

Charlotte Pooler

Keyword(s):

Qualitative Study ◽

Idiopathic Pulmonary Fibrosis ◽

Pulmonary Fibrosis ◽

Lung Disease ◽

Self Efficacy ◽

Symptom Management ◽

Management Strategies ◽

Self Management ◽

Chronic Obstructive ◽

Action Plans

BackgroundIdiopathic pulmonary fibrosis (IPF) is a progressive, incurable fibrotic lung disease in which patients and caregivers report a high symptom burden. Symptoms are often poorly managed and patients and caregivers struggle to alleviate their distress in the absence of self-management support.AimTo explore perceptions of symptoms, symptom management strategies and self-efficacy for patients with IPF and caregivers who received self-management education and action plans created and provided in a Multidisciplinary Collaborative Interstitial Lung Disease (MDC-ILD) Clinic.DesignA qualitative study was conducted with participants recruited from the MDC-ILD Clinic. Participants received an early integrated palliative approach; most attended ILD pulmonary rehabilitation and some received home care support. Semistructured interviews were conducted. Patient participants completed Measure Yourself Medical Outcome Profile (MYMOP) for symptom assessment and Chronic Obstructive Pulmonary Disease Self-Efficacy Scale to assess self-management efficacy.ResultsThirteen patients and eight self-declared caregiver participants were interviewed. IPF severity ranged from mild to advanced disease. Participants integrated and personalised self-management strategies. They were intentional and confident, focused on living well and engaged in anticipatory planning. Twelve participants completed the MYMOP. Five reported dyspnoea. Four reported fatigue as an additional or only symptom. One reported cough. Five declared no dyspnoea, cough or fatigue. Participants reported 80% self-efficacy in symptom management.ConclusionsThe approach to symptom self-management and education was beneficial to patients with IPF and caregiver participants. Participants personalised the strategies, focusing on living, and planned both in the moment and for the future. They were confident and expressed dignity and meaning in their lives.

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Understanding Relationship between Milestone and Decision-Making in Project Management: A Qualitative Study among Project Managers in Saudi Arabia

International Journal of Business and Management ◽

10.5539/ijbm.v13n8p184 ◽

2018 ◽

Vol 13 (8) ◽

pp. 184 ◽

Cited By ~ 2

Author(s):

Umar Altahtooh ◽

Thamir Alaskar

Keyword(s):

Decision Making ◽

Saudi Arabia ◽

Project Management ◽

Qualitative Study ◽

Thematic Analysis ◽

Project Managers ◽

Structured Interviews ◽

Pragmatic Research ◽

The Impact ◽

The Relationship

Despite the importance of milestone as a key knowledge in project management, there has been lack of research to understand the relationship between milestones and decision-making. This paper presents a pragmatic research context that aims understanding the nature of milestones and their relationship with different decision-making structures and responsibilities across projects. Data were collected through 14 semi-structured interviews with project managers and analyzed using thematic analysis. The findings explore the concepts of project milestones among project managers in Saudi Arabia. The paper finds that there is a relationship between milestones and the impact on decision-making.

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It’s like another world: the perceived beneficial effects of an artistically designed multisensory environment

Medical Humanities ◽

10.1136/medhum-2018-011492 ◽

2018 ◽

Vol 45 (1) ◽

pp. 52-59 ◽

Cited By ~ 2

Author(s):

Bliss Cavanagh ◽

Kirsti Haracz ◽

Miranda Lawry ◽

Carole James

Keyword(s):

Mental Health ◽

Management Strategies ◽

Study Data ◽

Self Management ◽

Structured Interviews ◽

Beneficial Effects ◽

The Arts ◽

Variation Approach ◽

Restorative Environment ◽

Multisensory Environment

Self-management strategies have been identified as having a key role in supporting mental health and preventing mental illness. Evidence suggests that spending time in nature, experiencing or viewing artwork and accessing sensory rooms all support self-management and positive mental health among varied clinical populations. This evidence informed the design of the sensory–art space (SAS), an artistically designed multisensory environment, which drew on themes and images of nature.The aim of this study was to explore the experiences and perceived benefits of the SAS among members of a university community.A maximum variation approach to sampling was used, and 18 participants were included in this qualitative study. Data were gathered via semi-structured interviews, which were audio-recorded and transcribed verbatim for thematic analysis.The findings presented six themes. The two core themes were: it’s like another world, and easy to focus and describe how the SAS produced the beneficial effects described in the four remaining themes of: emotionally nutritious, meditative effects, relaxation and therapeutic.Participants identified beneficial effects of the SAS that were consistent with the evidence for other self-management strategies. The identified benefits also aligned with existing theories suggesting that the SAS functioned as a restorative environment. This study is the first to explore the experience of art in a multisensory and multidimensional capacity, which further contributes to the growing field of receptive engagement with the arts for health outcomes.

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The aftermath of burn injury from the child’s perspective: A qualitative study

Journal of Health Psychology ◽

10.1177/1359105318800826 ◽

2018 ◽

Vol 25 (13-14) ◽

pp. 2464-2474 ◽

Cited By ~ 2

Author(s):

Marthe R Egberts ◽

Rinie Geenen ◽

Alette EE de Jong ◽

Helma WC Hofland ◽

Nancy EE Van Loey

Keyword(s):

Qualitative Study ◽

Thematic Analysis ◽

Parental Support ◽

Burn Injury ◽

Psychosocial Impact ◽

Structured Interviews ◽

Psychological Barriers ◽

Injury Event ◽

And Coping ◽

Vivid Memories

A burn injury event and subsequent hospitalization are potentially distressing for children. To elucidate the child’s experience of pediatric burn injury, children’s reflections on the burn event and its aftermath were examined. Semi-structured interviews were conducted with eight children (12–17 years old). Using thematic analysis, interview transcripts were coded and codes were combined into overarching categories. Three categories were identified: vivid memories; the importance of parental support; psychosocial impact and coping. Implications for care are discussed in terms of assessing children’s appraisals, paying attention to the parent’s role, and preparing families for potential psychological barriers after discharge.

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Swimming for dementia: An exploratory qualitative study: Innovative practice

Dementia ◽

10.1177/1471301218768372 ◽

2018 ◽

Vol 18 (2) ◽

pp. 776-784 ◽

Cited By ~ 2

Author(s):

Tanya Hobden ◽

Mary Swallow ◽

Charlotte Beer ◽

Tom Dening

Keyword(s):

Qualitative Study ◽

Physical Fitness ◽

Thematic Analysis ◽

Local Group ◽

Weight Bearing ◽

Structured Interviews ◽

Innovative Practice ◽

People With Dementia ◽

The Impact

Swimming is a non-weight bearing form of exercise that can be enjoyable and promote physical fitness. This qualitative study investigated a local group established as part of a national dementia swimming initiative. Semi-structured interviews with people with dementia (N = 4), carers or companions (N = 4) and the organisers and facilitators of the group (N = 6) were analysed using thematic analysis. This revealed four main themes: (1) the pleasure of swimming and its benefits as a form of exercise and for building confidence and empowering participants, (2) the importance of insight and empathy in creating a safe and secure experience, (3) the impact of dementia and (4) how participants valued being part of a group ‘all in the same boat’. ‘Dementia friendly swimming’ appears to be a valuable form of exercise, but it requires considerable preparation and support to make it happen.

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Prostate Cancer Survivors’ and Caregivers’ Experiences Using Behavior Change Techniques during a Web-Based Self-Management and Physical Activity Program: A Qualitative Study

Journal of Clinical Medicine ◽

10.3390/jcm9103244 ◽

2020 ◽

Vol 9 (10) ◽

pp. 3244

Author(s):

Laura Hallward ◽

Keryn Chemtob ◽

Sylvie D. Lambert ◽

Lindsay R. Duncan

Keyword(s):

Physical Activity ◽

Prostate Cancer ◽

Qualitative Study ◽

Behavior Change ◽

Management Program ◽

Self Management ◽

Positive Outcomes ◽

Structured Interviews ◽

Behavior Change Techniques ◽

Web Based

Both men with prostate cancer and their caregivers report experiencing a number of challenges and health consequences, and require programs to help support the cancer patient–caregiver dyad. A tailored, web-based, psychosocial and physical activity self-management program (TEMPO), which implements behavior change techniques to help facilitate behavior change for the dyads was created and its acceptability was tested in a qualitative study. The purpose of this secondary analysis was to explore the dyads’ experiences using behavior change techniques to change behavior and address current needs and challenges while enrolled in TEMPO. Multiple semi-structured interviews were conducted with 19 prostate cancer-caregiver dyads over the course of the program, resulting in 46 transcripts that were analyzed using an inductive thematic analysis. Results revealed four main themes: (1) learning new behavior change techniques, (2) engaging with behavior change techniques learned in the past, (3) resisting full engagement with behavior change techniques, and (4) experiencing positive outcomes from using behavior change techniques. The dyads’ discussions of encountering behavior change techniques provided unique insight into the process of learning and implementing behavior change techniques through a web-based self-management program, and the positive outcomes that resulted from behavior changes.

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