The use of mixed methods in studying a chronic illness

Abstract

This article explores mixed methods approaches with an illness called Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Qualitative and Quantitative data were used to investigate the epidemiology of this illness, as well as explore attributions based on the name of the illness, and finally treatment approaches. In each of the domains within the ME and CFS research reviewed, our analyses were richer and our findings ultimately more impactful when we integrated qualitative and quantitative research methods. The use of a multiphase mixed methods research program provided our team unique vantage points for better understanding social and community issues involving this controversial chronic illness. Further, this approach allowed us to implement the insights gained through an advocacy lens to change policy, recommend and evaluate treatments, and amplify voices within the patient population. In this way, we believe that the practice of methodological pluralism is especially applicable and effective to the study of chronic illness, and believe other investigators will benefit from the use of these approaches with similar disenfranchised and unfairly treated populations.

Organizational Responsiveness to the COVID-19 Pandemic: a Mixed Methods Social Validity Assessment of Human Services Care Providers

“…As illustrated in this study, initial qualitative analysis often has the purpose of designing an instrument for acquiring measures pertinent to health-related services and outcomes (Bowers et al, 2013;Fetters et al, 2013;Song et al, 2010. For example, Jason andReed (2015) described mixed methods approaches toward myalgic encephalomyelitis (ME)/ chronic fatigue syndrome (CFS), starting with patient and illness support group interviews that addressed symptom presentation, access to treatment, negative encounters with medical professionals, and stigmatization. Qualitative analysis within a grounded theory framework was followed by quantitative measurement through several screening instruments and rating scales which refined demographic variables and diagnostic criteria among ME/CFS patients.…”

“…The acquired measures also suggested alternative treatment modalities and sources of community support to help cope with the illness. Relative to the objectives and benefits of mixed methods research, Jason and Reed (2015) concluded that "Quantitative research provided us the data on the magnitude of this illness, whereas the qualitative methods allowed us to better understand the unique challenges and stigma that the patients had experienced from their families, friends, and treatment professionals" (p. 10).…”

Health care trajectories and barriers to treatment for patients with end-stage renal disease without health insurance in Mexico: a mixed methods approach

“…To improve the range and depth of the study, we combined quantitative and qualitative data. The quantitative data were used to describe and characterize the population and to reconstruct their medical care history, while the qualitative component served to better understand their experience in their search for medical care, access to services, and treatment for their illness [23,24]. It also allowed for a more robust exploration of the barriers faced by patients and their families throughout the process.…”

“…It also allowed for a more robust exploration of the barriers faced by patients and their families throughout the process. In this sense, both the qualitative and quantitative areas of focus contributed important complementary information [23,24].…”

Lyme Disease: Giving Voice to the Illness Experience-An Exploratory Descriptive Study

“…2.1.2 Likert Scale statements. The Likert Scale statement item section, called The Illness Experience Survey, was based on: 1) the aim of this study,2) current literature available on individuals suffering with Lyme disease and/or chronic illness (Ali et al, 2014;Ferguson, 2012;Horowitz, 2017;Jason & Reed, 2015;Johnson et al, 2011;Morris & Sanders, 2018;Nicolai et al, 2018;Ortenblad, Meillier, & Jonsson, 2018;Rebmanet al, 2017;Siegal, Brown, Devendoff, Collier, & Jason, 2018;Slightam, Brandt, Jenchura, Lewis, Asch, & Zulman, 2018;van den Wijngaard, 2015), 3) current literature on grief in general as related to chronic illness (Boss & Couden, 2002;Gill & Lowes, 2014), 4), literature on disenfranchised grief (Attig, 2004;Doka, 2002;Gill & Lowes, 2014;Sobel & Cowan, 2003), and 5) information gleaned through this author's experiences in speaking to many people suffering with chronic Lyme disease over the course of several years. The list of Likert Scale statement items listed on The Illness Experience Survey is outlined in Table 2.…”