Tag: qualitative research

Voice of the patient: people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) share in their own words

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, debilitating illness affecting millions of people worldwide. Patients with ME/CFS often feel misunderstood and report facing barriers to healthcare utilization.

Objective: We report on a Voice of the Patient (VOP) series that used tenets from photovoice and hermeneutic phenomenology methods. The approach prioritized respecting and engaging patients as they share individual experiences of living with ME/CFS.

Methods: We developed a 5-step process that could be replicated for interviewing patients in their own words. The process prioritized respecting patients while developing, documenting, and sharing individual accounts of living with ME/CFS. The standardized process for gathering each VOP story enabled individuals to share and participate on their own terms.

Results: Over four years, eight VOP stories were completed and posted on CDC’s ME/CFS website. The stories received over 196,000 page views. Each story was completed in approximately six months. Participants expressed gratitude for the opportunity to share experiences and were appreciative of the process that involved them in the development of stories.

Conclusions: Qualitative methods guided the process for participants taking a central role in sharing stories, which in turn may help educate about patient experiences with ME/CFS. Standardization of steps enabled consistency and transparency. Building flexibility into the process allowed interviewing a range of people with ME/CFS (i.e. bed bound to working) and enabled patients to give narratives in their voice. This process may help to share experiences of people with other chronic diseases or infection associated chronic conditions.

Source: Brimmer DJ, Lin JS, Unger ER. Voice of the patient: people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) share in their own words. Fatigue. 2025;13(2):1-11. doi: 10.1080/21641846.2024.2444826. PMID: 40123856; PMCID: PMC11926923. https://pmc.ncbi.nlm.nih.gov/articles/PMC11926923/ (Full text)

The most severely ill patients with ME/CFS in Denmark

Abstract:

A subset of patients suffering from ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome) are severely ill, bedridden, and dependent on personal care. This study aims to describe the medical and social conditions of the most severely ill patients with ME/CFS in Denmark and the situation of their caregivers.

Qualitative data were collected during 19 home visits to severely ill patients in Denmark. The patients interviewed were characterised by extremely low physical and mental functioning and longstanding illness. Relative to their dire condition, the participants received very little help from medical professionals and health services such as institutions and hospitals. There was an overall negative interaction with psychiatric interventions, and the relations between patients and the health system were generally characterised by mutual distrust. Social services were often dismissed, and obtaining the services was often described as more of a burden than a benefit.

In conclusion, the most severely ill patients with ME/CFS and their caregivers must be characterised as a systematically neglected patient group not comparable to any other similarly ill group.

Source: la Cour, P. (2024). The most severely ill patients with ME/CFS in Denmark. Cogent Public Health, 11(1). https://doi.org/10.1080/27707571.2024.2359958 https://www.tandfonline.com/doi/full/10.1080/27707571.2024.2359958 (Full text)

An exploration of the experiences and self-generated strategies used when navigating everyday life with Long Covid

Abstract:

Background: Around one in ten people who contract Covid-19 report ongoing symptoms or ‘Long Covid’. Without any known interventions to cure the condition, forms of self-management are routinely prescribed by healthcare professionals and described by people with the condition. However, there is limited research exploring what strategies are used to navigate everyday life with Long Covid, and experiences that initiate development of these strategies. Our study aimed to explore the range and influence of self-generated strategies used by people with Long Covid to navigate everyday life within the context of their own condition.

Methods: Forming part of the Long Covid Personalised Self-managemenT support co-design and EvaluatioN (LISTEN) project, we conducted a qualitative study using narrative interviews with adults who were not hospitalised with Covid-19. Participants aged over 18 years, who self-identified with Long Covid, were recruited from England and Wales. Data were analysed with patient contributors using a reflexive thematic analysis.

Results: Eighteen participants (mean age = 44 years, SD = 13 years) took part in interviews held between December 2021 and February 2022. Themes were constructed which depicted 1) the landscape behind the Long Covid experience and 2) the everyday experience of participants’ Long Covid. The everyday experience comprised a combination of physical, emotional, and social factors, forming three sub-themes: centrality of physical symptoms, navigating ‘experts’ and the ‘true colour’ of personal communities, and a rollercoaster of psychological ambiguity). The third theme, personal strategies to manage everyday life was constructed from participants’ unique presentations and self-generated solutions to manage everyday life. This comprised five sub-themes: seeking reassurance and knowledge, developing greater self-awareness through monitoring, trial and error of ‘safe’ ideas, building in pleasure and comfort, and prioritising ‘me’.

Conclusions: Among this sample of adults with Long Covid, their experiences highlighted the unpredictable nature of the condition but also the use of creative and wide ranging self-generated strategies. The results offer people with Long Covid, and healthcare professionals supporting them, an overview of the collective evidence relating to individuals’ self-management which can enable ways to live ‘better’ and regain some sense of identity whilst facing the impact of a debilitating, episodic condition.

Trial registration: LISTEN ISRCTN36407216.

Source: Leggat FJ, Heaton-Shrestha C, Fish J, Siriwardena AN, Domeney A, Rowe C, Patel I, Parsons J, Blair J, Jones F. An exploration of the experiences and self-generated strategies used when navigating everyday life with Long Covid. BMC Public Health. 2024 Mar 13;24(1):789. doi: 10.1186/s12889-024-18267-6. PMID: 38481230; PMCID: PMC10938753. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10938753/ (Full text)

A suffering body, hidden away from others: The experience of being long-term bedridden with severe myalgic encephalomyelitis/chronic fatigue syndrome in childhood and adolescence

Abstract:

In this article, we present findings from a qualitative study examining how young women experience being long-term bedridden with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), during childhood and adolescence. The aim is to explore how young women who fell ill with ME/CFS during childhood and adolescence look back on their lived experience of being long-term bedridden from the vantage point of being fully or partially recovered.

Informed by a phenomenological theoretical perspective, the researchers applied a narrative methodological approach involving the analysis of interviews with 13 women, aged 16–29 years at the time of the interview. Attention was particularly paid to how participants structured their narratives and to the events (telling moments) they identified as important.

Four major storylines were developed: Ambivalent responses to the presence of others; A body on the edge of life; An eternity in the dark; and Recasting painful memories of being bedridden and alone.

Based on our findings, we argue that the experience of being long-term bedridden with ME/CFS during childhood and adolescence can be understood and communicated as a plot in which individuals find themselves pushed to the extreme limit of suffering and loneliness.

Source: Krabbe, S. H., Bjorbækmo, W. S., Mengshoel, A. M., Sveen, U., & Groven, K. S. (2024). A suffering body, hidden away from others: The experience of being long-term bedridden with severe myalgic encephalomyelitis/chronic fatigue syndrome in childhood and adolescence. Nursing Inquiry, e12625. https://doi.org/10.1111/nin.12625 https://onlinelibrary.wiley.com/doi/10.1111/nin.12625 (Full text)

“None of us are lying”: an interpretive description of the search for legitimacy and the journey to access quality health services by individuals living with Long COVI

Abstract:

Background: Understanding of Long COVID has advanced through patient-led initiatives. However, research about barriers to accessing Long COVID services is limited. This study aimed to better understand the need for, access to, and quality of, Long COVID services. We explored health needs and experiences of services, including ability of services to address needs.

Methods: Our study was informed by the Levesque et al.’s (2013) “conceptual framework of access to health care.” We used Interpretive Description, a qualitative approach partly aimed at informing clinical decisions. We recruited participants across five settings. Participants engaged in one-time, semi-structured, virtual interviews. Interviews were transcribed verbatim. We used reflexive thematic analysis. Best practice to ensure methodological rigour was employed.

Results: Three key themes were generated from 56 interviews. The first theme illustrated the rollercoaster-like nature of participants’ Long COVID symptoms and the resulting impact on function and health. The second theme highlighted participants’ attempts to access Long COVID services. Guidance received from healthcare professionals and self-advocacy impacted initial access. When navigating Long COVID services within the broader system, participants encountered barriers to access around stigma; appointment logistics; testing and ‘normal’ results; and financial precarity and affordability of services. The third theme illuminated common factors participants liked and disliked about Long COVID services. We framed each sub-theme as the key lesson (stemming from all likes and dislikes) that, if acted upon, the health system can use to improve the quality of Long COVID services. This provides tangible ways to improve the system based directly on what we heard from participants.

Conclusion: With Long COVID services continuously evolving, our findings can inform decision makers within the health system to better understand the lived experiences of Long COVID and tailor services and policies appropriately.

Source: Brehon K, Miciak M, Hung P, Chen SP, Perreault K, Hudon A, Wieler M, Hunter S, Hoddinott L, Hall M, Churchill K, Brown DA, Brown CA, Bostick G, Skolnik K, Lam G, Weatherald J, Gross DP. “None of us are lying”: an interpretive description of the search for legitimacy and the journey to access quality health services by individuals living with Long COVID. BMC Health Serv Res. 2023 Dec 12;23(1):1396. doi: 10.1186/s12913-023-10288-y. PMID: 38087299; PMCID: PMC10714615. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10714615/ (Full text)

Systems thinking, subjective findings and diagnostic “pigeonholing” in ME/CFS: A mainly qualitative public health study from a patient perspective

Abstract:

in English, German

Background: ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome) is an illness that is predominantly viewed as a neuroimmunological multisystem disease, which is still unknown to many doctors in Germany or which they classify as a psychosomatic disease. From their perspective, ME/CFS patients report significant deficits in terms of medical treatment and a doctor-patient relationship (DP relationship) that is perceived as problematic. The aim of the present study is to more precisely analyse the process of finding a diagnosis as an influencing factor on the DP relationship in ME/CFS from the point of view of those affected.

Method: As part of an explorative qualitative survey, 544 ME/CFS patients (> 20 years; 455 ♀, 89 ♂) with a medical diagnosis of ME/CFS were asked in writing about their experiences with regard to the process of finding a diagnosis. The sampling was previously done by self-activation and via the snowball principle. The questionnaire to be answered was structured analogously to a focused, standardized guideline interview. The evaluation was carried out as part of a qualitative content analysis according to Mayring. Some of the results were subsequently quantified.

Results: The participants described what they saw as the inadequate process of making a diagnosis as a central factor in a problematic DP relationship in ME/CFS. From their point of view, many doctors deny the existence of ME/CFS or classify it as a solely psychosomatic illness, insist on their level of knowledge, ignore patient knowledge and disregard scientific information provided. They follow the standard program, think in “pigeonholes” and are incapable of systemic thinking. This has a significant impact on the DP relationship.

Discussion: From the point of view of ME/CFS patients, the process of making a diagnosis and the recognition of ME/CFS as a neuroimmunological multisystem disease are the central aspects of a DP relationship that they experience as problematic. In the past, findings classified as “subjective” and thus ignored, the pigeonholing that is characteristic of biomedically oriented medicine and a healthcare system that opposes systemic thinking when making a diagnosis have all been identified as factors that may have a significant impact on the DP relationship.

Source: Habermann-Horstmeier L, Horstmeier LM. Systemisches Denken, subjektive Befunde und das diagnostische „Schubladendenken“ bei ME/CFS – Eine vorwiegend qualitative Public-Health-Studie aus Patientensicht [Systems thinking, subjective findings and diagnostic “pigeonholing” in ME/CFS: A mainly qualitative public health study from a patient perspective]. Dtsch Med Wochenschr. 2023 Dec 14. German. doi: 10.1055/a-2197-6479. Epub ahead of print. PMID: 38096913. https://pubmed.ncbi.nlm.nih.gov/38096913/

Implications of the quality of the doctor-patient relationship on health in adult ME/CFS patients. A qualitative public health study from a patient perspective

Abstract:

in English, German

Background: Most patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are dissatisfied with medical care. They complain about e. g. the lack of medical recognition of ME/CFS as a neuroimmunological disease and the medical perception of those affected as “difficult patients”.

Method: As part of an exploratory qualitative survey, 544 medically diagnosed ME/CFS patients (> 20 years; 455 ♀, 89 ♂) were asked about their subjective experiences with regard to the doctor-patient relationships (DP relationship) to their treating physicians. The questionnaire was structured analogously to a focused, standardized guideline interview. The written answers were evaluated using a qualitative content analysis according to Mayring.

Results: The participants reported a significant deterioration in their health situation and their quality of life as a result of misdiagnoses and incorrect treatments, the strained DP relationship and the lack of support from the physicians. All of this leads to fear of visiting the doctor, a general loss of trust in physicians, a feeling of helplessness up to bitterness and resignation – with suicide as the last mental option for some patients to escape from this precarious situation. During medical consultations, other participants only addressed health problems that were not related to ME/CFS, or only went to the doctor in an emergency, or refrained from contacting doctors entirely.

Conclusions: The DP relationship described by the participants as problematic in their opinion has significant negative health consequences for them. It is therefore of great urgency to develop a patient-centred treatment concept that focuses on ME/CFS patients as experts on their own illness.

Source: Habermann-Horstmeier L, Horstmeier LM. Auswirkungen der Qualität der Arzt-Patient-Beziehung auf die Gesundheit von erwachsenen ME/CFS-Erkrankten : Eine qualitative Public-Health-Studie aus Patientensicht [Implications of the quality of the doctor-patient relationship on health in adult ME/CFS patients. A qualitative public health study from a patien perspective]. MMW Fortschr Med. 2023 Dec;165(Suppl 5):16-27. German. doi: 10.1007/s15006-023-2894-z. PMID: 38062324.

“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)