Tag: qualitative research

“It was almost like it’s set up for people to fail” A qualitative analysis of experiences and unmet supportive needs of people with Long COVID

Abstract:

Background: Almost twenty percent of adults with COVID-19 develop Long COVID, leading to prolonged symptoms and disability. Understanding the supportive needs of people with Long COVID is vital to enacting effective models of care and policies.

Design/methods: This qualitative sub-study explored the experiences of people with Long COVID and their unmet needs. Participants enrolled in a larger study to evaluate the post-acute cardiovascular impacts of COVID-19 were invited to participate in subsequent in-depth interviews. Participants were enrolled purposively until saturation at 24 participants. Data were analyzed using thematic content analysis.

Results: Participants focused on adaptations to life with Long COVID and their unmet needs in different life spheres. Three domains, 1) occupational and financial; 2) healthcare-related; and 3) social and emotional support, emerged as areas affecting quality of life. Although participants were motivated to return to work for financial and personal reasons, Long COVID symptoms often resulted in the inability to perform tasks required by their existing jobs, and unemployment. Those who maintained employment through employer accommodations still needed additional support. Participants encountered diagnostic challenges, challenges in accessing specialty appointments, insurance loopholes, high healthcare costs, and medical skepticism. Existing social networks provided support for completing daily tasks; however, those with Long COVID typically turned to others with similar lived experiences for emotional support. Participants found government support programs inadequate and difficult to access in all three domains.

Discussion: We propose a five-pronged policy approach to support persons with Long COVID. These overarching recommendations are (1) improve public awareness of Long COVID; (2) improve clinical care quality and access; (3) implement additional school and workplace accommodations; (4) strengthen socioeconomic benefits and social services; and (5) improve research on Long COVID.

Source: McNabb, K.C., Bergman, A.J., Smith-Wright, R. et al. “It was almost like it’s set up for people to fail” A qualitative analysis of experiences and unmet supportive needs of people with Long COVID. BMC Public Health 23, 2131 (2023). https://doi.org/10.1186/s12889-023-17033-4 https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-023-17033-4 (Full text)

Patient perspectives of recovery from myalgic encephalomyelitis/chronic fatigue syndrome: An interpretive description study

Abstract:

Aims and objectives: Myalgic encephalomyelitis (ME), also called chronic fatigue syndrome (CFS), is characterised by persistent fatigue, postexertional malaise, and cognitive dysfunction. It is a complex, long-term, and debilitating illness without widely effective treatments. This study describes the treatment choices and experiences of ME/CFS patients who have experienced variable levels of recovery.

Method: Interpretive description study consisting of semi-structured qualitative interviews with 33 people who met the US Centers for Disease Control (2015) diagnostic criteria for ME/CFS and report recovery or symptom improvement.

Results: Twenty-six participants endorsed partial recovery, and seven reported full recovery from ME/CFS. Participants reported expending significant time and energy to identify, implement, and adapt therapeutic interventions, often without the guidance of a medical practitioner. They formulated individualised treatment plans reflecting their understanding of their illness and personal resources. Most fully recovered participants attributed their success to mind-body approaches.

Conclusion: Patients with ME/CFS describe independently constructing and managing treatment plans, due to a lack of health system support. Stigmatised and dismissive responses from clinicians precipitated disengagement from the medical system and prompted use of other forms of treatment.

Source: Hasan Z, Kuyvenhoven C, Chowdhury M, Amoudi L, Zeraatkar D, Busse JW, Sadik M, Vanstone M. Patient perspectives of recovery from myalgic encephalomyelitis/chronic fatigue syndrome: An interpretive description study. J Eval Clin Pract. 2023 Nov 6. doi: 10.1111/jep.13938. Epub ahead of print. PMID: 37927138. https://onlinelibrary.wiley.com/doi/10.1111/jep.13938 (Full text)

‘We have no services for you… so you have to make the best out of it’: A qualitative study of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients’ dissatisfaction with healthcare services

Abstract:

Introduction: People should have access to healthcare services that are effective, safe and secure, patient-centred, and coordinated and continuous. One group that has consistently reported negative experiences and feels dissatisfied with services are patients with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS). The objective of this study was to develop a deeper understanding of the experiences of dissatisfaction among ME/CFS patients and explore the reasons for such dissatisfaction.

Methods: We conducted in-depth interviews with 48 people from 24 households (comprising patients and family members), providing insight into the experiences of 37 ME/CFS sufferers in Norway. The participants were purposively sampled and included persons of different ages, genders, time since having the condition (3-30 years), and severity.

Results: Four main themes were developed: (1) ‘Nonexistent services’ cover patients’ experience that healthcare services had nothing to offer them after receiving their ME/CFS-diagnosis. (2) ‘Nonpersonalised services’ documents experiences where patients did receive services, which in theory was appropriate for relieving a specific health problem, but in practice were experienced as inappropriate because they were not adapted to the patient’s need. (3) ‘Slow services’ address patients’ experience of getting services too late (or too little) to be useful. (4) ‘Wrong services’ comprise patients’ experiences of being offered and/or ‘forced’ to accept services that they felt were inappropriate for their health problems.

Conclusions: Providers’ lacking knowledge of the condition and lack of precise recommendations for follow up may partly explain unsatisfactory experiences. Providers’ belief (or disbelief) in the condition could furthermore influence caregiving. Also, systemic issues in the healthcare sector, like high workloads and bureaucracy, can negatively affect care provision. Finally, users’ unsatisfactory experiences may also be due to a lack of patient involvement in the design of such services. Further research should investigate how patients can be involved in service design, and also providers’ perspectives on caregiving and the barriers they experience for providing high-quality care.

Patient or public contribution: The ME-patient organisation suggested research topics to the call from which this study got funding. Patients and caregivers provided feedback during analysis and interpretation of data.

Source: Melby L, Nair RD. ‘We have no services for you… so you have to make the best out of it’: A qualitative study of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients’ dissatisfaction with healthcare services. Health Expect. 2023 Oct 31. doi: 10.1111/hex.13900. Epub ahead of print. PMID: 37905602. https://onlinelibrary.wiley.com/doi/10.1111/hex.13900 (Full text)

Exploring the Complexities of Long Covid: An Analysis of Illness Narratives through Antonovsky’s Sense of Coherence Theory

Abstract:

Long Covid is a chronic illness resulting from Covid-19 infection, characterized by persistent symptoms over an extended period. Given the significant impact on affected individuals’ lives, it is crucial to understand and interpret their experiences. Therefore, comprehending how affected individuals understand, manage, and derive meaning from their lives becomes essential.

Antonovsky’s Sense of Coherence (SOC) theory (1987), compromising Comprehensibility, Manageability, and Meaningfulness, can serve as a foundation for this exploration. SOC is shaped by life experiences and aids in finding effective coping strategies. However, the expression of SOC among people with long Covid has not yet been studied. Therefore, this study examines how people with long Covid negotiate the three SOC components in illness narratives.

Thematic analysis of 34 online collected illness narratives from Dutch individuals with long Covid revealed 13 themes interpreted in relation to SOC components. The findings include three themes that were interpreted as reflecting the Comprehensibility component, displaying an understanding of long Covid and its’ impact, and experiences of social support.

Three themes fall under Manageability by describing maintaining control and normality through seeking professional help and adapting to the new state of health. Meaningfulness was characterized by two themes, expressing recognition of values and a sense of direction for maintaining motivation in recovery. Five themes were interpreted as barriers to SOC components, as participants mentioned experiencing misunderstanding and invalidations, medical and public uncertainty, relinquishing enjoyable activities, and struggles in progress and illness acceptance. These results can enhance understanding of long Covid among individuals and assist healthcare practitioners tailor interventions to their specific needs.

Source: Estelle Gosch. Exploring the Complexities of Long Covid: An Analysis of Illness Narratives through Antonovsky’s Sense of Coherence Theory. Master Thesis Positive Clinical Psychology and Technology, Department of Psychology, Health, and Technology, Faculty Behavioural, Management, and Social Sciences, University of Twente. http://essay.utwente.nl/95672/1/Gosch_MA_BMS.pdf (Full text)

Long COVID as a never-ending puzzle: the experience of primary care physicians

Abstract:

Background: Long COVID provides a new context in which primary healthcare needs to be reexamined, especially because it has health and social dimensions. The experiences of care for patients with long COVID and primary care physicians’ perceptions are an unexplored area.

Aim: To explore the experiences of Slovenian primary care physicians in management and treatment of patients with long COVID.

Design & setting: A qualitative interview study in Slovenian primary care was carried out between November 2021 and April 2022.

Method: Semi-structured interviews were held with physicians that had treated patients with long COVID until saturation was reached. Qualitative content analysis (QCA) was used to analyze the data collected.

Results: Seventeen participants were interviewed. Six categories were defined based on the coding process: the definition and symptoms of long COVID; social exclusion, sick leave, returning to the work environment, cooperation with rehabilitation centers and the importance of trust and good communication with the patient.

Conclusion: The study shows the experiences of Slovenian primary care physicians in the management and treatment of long COVID. The problems related to long COVID were divided into two groups: health problems and psycho-social problems. Slovenian physicians have the greatest problems with dealing with the patient’s ability to work. It was found that adequate communication and trust between physicians and patients are two important indicators for an integrated model of managing long COVID.

Source: Rotar Pavlic D, Maksuti A, Mihevc M, Munda A, Medija K, Strauch V. Long COVID as a never-ending puzzle: the experience of primary care physicians. BJGP Open. 2023 Jul 12:BJGPO.2023.0074. doi: 10.3399/BJGPO.2023.0074. Epub ahead of print. PMID: 37437953. https://bjgpopen.org/content/early/2023/07/11/BJGPO.2023.0074 (Full text available as PDF file)

A phenomenological study on the lived experience of men with Chronic Fatigue Syndrome

Abstract:

Whilst chronic fatigue syndrome (CFS) has been widely researched amongst women, studies investigating how men experience a CFS diagnosis is limited.

This study utilised an interpretative phenomenological approach to interview five men who have a medical diagnosis of CFS.

Six themes emerged to demonstrate the participants’ experiences prior to, during and after obtaining their CFS diagnosis.

Findings revealed that participants were initially reluctant to accept their condition, confounded by their perception that symptoms compromised their sense of masculinity. They also felt that healthcare professionals had limited recognition of CFS leading them to seek social support and legitimisation from other sources.

The struggle to come to terms with a different lifestyle and sense of masculinity prevailed. Such knowledge could be effectively utilised by researchers, practitioners and employers to facilitate an increased understanding of male accounts of the condition and more bespoke interventions where required.

Source: Snell GE, Seage CH, Mercer J. A phenomenological study on the lived experience of men with Chronic Fatigue Syndrome. J Health Psychol. 2023 Jul 17:13591053231186385. doi: 10.1177/13591053231186385. Epub ahead of print. PMID: 37455618. https://pubmed.ncbi.nlm.nih.gov/37455618/

 

Invisibility and diagnosis stigma: disabling factors for female adults with myalgia encephalomyelitis (ME)/chronic fatigue syndrome (CFS) in a small-scale qualitative study in England

Abstract:

Purpose: Female adults diagnosed with myalgia encephalomyelitis (ME) and chronic fatigue syndrome (CFS) often are marginalised because their condition is not fully recognised by medical and health-care systems. The purpose of this small-scale study was to explore the lived experiences of adult females with ME/CFS in England in relation to contributing factors that impact their occupational participation.

Design/methodology/approach: A qualitative study design using semi-structured interviews was used with nine female adult participants who were selected using a purposive sampling method. A Thematic Networks tool was used to analyse data.

Findings: Four organising themes were identified: impairment-, person-, environment- and society-related factors. Two global themes, invisibility and diagnosis stigma, were identified as the overarching issues that female adults with ME/CFS face in occupational participation.

Originality/value: Many of the issues that contribute to lack of participation by this population are associated with environmental factors which are secondary to their illness.

Source: Khalafbeigi, M., Yazdani, F., Genis, F., Hess, K.Y. and Kirve, S. (2023), “Invisibility and diagnosis stigma: disabling factors for female adults with myalgia encephalomyelitis (ME)/chronic fatigue syndrome (CFS) in a small-scale qualitative study in England”, Irish Journal of Occupational Therapy, Vol. ahead-of-print No. ahead-of-print. https://doi.org/10.1108/IJOT-08-2022-0032 https://www.emerald.com/insight/content/doi/10.1108/IJOT-08-2022-0032/full/html (Full text)

Pre-pandemic activity on a myalgic encephalomyelitis/chronic fatigue syndrome support forum is highly associated with later activity on a long COVID support forum for a variety of reasons: a mixed methods study.

Abstract:

Encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID share some clinical and social characteristics. We predicted that this would lead to an increased interaction between pre-pandemic members of a ME/CFS online support community and a long COVID community.

We performed a mixed-methods retrospective observational study of the Reddit activity of 7,544 users active on Reddit’s long COVID forum. From among 1600 forums, pre-pandemic activity specifically on a ME/CFS forum is the top predictor of later participation on the long COVID forum versus an acute COVID support forum.

In the qualitative portion, motives for this co-participation included seeking mutual support and dual identification with both conditions. Some of this effect may be explained by pre-existing ME/CFS possibly being a risk factor for long COVID and/or SARS-CoV-2 infection being a cause of ME/CFS relapse. The high rate of ME/CFS patients seeking mutual support on a long COVID forum speaks to the long-suffering experience of these patients not feeling heard or respected, and the hope of some ME/CFS patients to gain legitimacy through the public’s growing recognition of long COVID.

Source: William U Meyerson, Rick H Hoyle. Pre-pandemic activity on a myalgic encephalomyelitis/chronic fatigue syndrome support forum is highly associated with later activity on a long COVID support forum for a variety of reasons: a mixed methods study. medRxiv 2023.06.30.23292087; doi: https://doi.org/10.1101/2023.06.30.23292087 https://www.medrxiv.org/content/10.1101/2023.06.30.23292087v1 9 (Full text available as PDF file)

Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome

Abstract:

Background: The condition known as chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is poorly understood. Simplified medical models tend to neglect the complexity of illness, contributing to a terrain of uncertainty, dilemmas and predicaments. However, despite pessimistic pictures of no cure and poor prognosis, some patients recover.

Purpose: This study’s purpose is to provide insight into people’s experiences of suffering and recovery from very severe CFS/ME and illuminate understanding of how and why changes became possible.

Methods: Fourteen former patients were interviewed about their experiences of returning to health. A narrative analysis was undertaken to explore participants’ experiences and understandings. We present the result through one participant’s story.

Results: The analysis yielded a common plotline with a distinct turning point. Participants went through a profound narrative shift, change in mindset and subsequent long-time work to actively pursue their own healing. Their narrative understandings of being helpless victims of disease were replaced by a more complex view of causality and illness and a new sense of self-agency developed.

Discussion: We discuss the illness narratives in relation to the disease model and its shortcomings, the different voices dominating the stories at different times in a clinically, conceptually, and emotionally challenging area.

Source: Bakken AK, Mengshoel AM, Synnes O, Strand EB. Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome. Int J Qual Stud Health Well-being. 2023 Dec;18(1):2223420. doi: 10.1080/17482631.2023.2223420. PMID: 37307500; PMCID: PMC10262810. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10262810/ (Full text)

Nursing Diagnoses of Individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Research Protocol for a Qualitative Synthesis

Abstract:

Although previously developed qualitative studies have explored the experience of illness of individuals with myalgic encephalomyelitis/chronic fatigue syndrome, these findings have not been undertaken for the purpose of enabling the identification of nursing care needs in such patients. This study aims to identify NANDA-I nursing diagnoses of adults with myalgic encephalomyelitis/chronic fatigue syndrome based on a qualitative literature review of their experience of illness.

The protocol includes: searches in the electronic databases Medline, Embase, CINAHL, PsycINFO, SCI-EXPANDED, SSCI, SciELO, LILACS, and Cuiden; and manual searches in specialised journals and the references of the included studies. The authors will systematically search qualitative research studies published in databases from 1994 to 2021. Searches are limited to studies in Spanish and English. All stages of the review process will be carried out independently by two reviewers. Any disagreements shall be resolved through joint discussions, involving a third reviewer if necessary.

The findings will be synthesised into a thematic analysis informed by the Domains and Classes of the NANDA-I Classification of Nursing Diagnoses, which will then serve to identify nursing diagnoses. This review will enable nursing professionals to identify the care needs of individuals with myalgic encephalomyelitis/chronic fatigue syndrome by taking into consideration their experience of illness in its entirety.

Source: Oter-Quintana C, Esteban-Hernández J, Cuéllar-Pompa L, Gil-Carballo MC, Brito-Brito PR, Martín-García A, Alcolea-Cosín MT, Martínez-Marcos M, Alameda-Cuesta A. Nursing Diagnoses of Individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Research Protocol for a Qualitative Synthesis. Healthcare (Basel). 2022 Dec 10;10(12):2506. doi: 10.3390/healthcare10122506. PMID: 36554030; PMCID: PMC9777975. https://www.mdpi.com/2227-9032/10/12/2506 (Full text)