Attending to Methodological Challenges in Qualitative Research to Foster Participation of Individuals with Chronic Critical Illness and Communication Impairments

Fuchsia Howard,Sarah Crowe,Scott Beck,Gregory Haljan

doi:10.1177/23333936211000044

Fuchsia Howard, Sarah Crowe + Show 2 more

Open Access

https://doi.org/10.1177/23333936211000044

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Abstract

Individuals with chronic critical illness experience multiple complex physiological disturbances including ongoing respiratory failure, requiring prolonged mechanical ventilation, and thus communication impairments. In conducting a qualitative interpretive description study, we sought to ensure that individuals with chronic critical illness themselves were included as participants. Our commitment to recruiting these individuals to the study and ensuring their data meaningfully informed the analysis and findings required us to reconsider and challenge some of the traditional notions of high-quality qualitative research and develop appropriate practical strategies. These strategies included: (1) centering participant abilities and preferences, (2) adopting a flexible approach to conducting interviews, (3) engaging in a therapeutic relationship, and (4) valuing “thin” data. In this article, we extend existing literature describing the complexities of conducting research with individuals with communication impairments and strategies to consider in the hopes of informing future research with other populations historically excluded from study participation.

Highlights

Patient experiences are an important source of evidence in nursing and health research and essential to designing and evaluating care and services
The first-hand experiences of individuals with acquired impairments that affect their ability to communicate have largely been absent from the literature (Carlsson et al, 2007; Laakso et al, 2011; Lloyd et al, 2006). Such excluded individuals have been those with severe communication impairment and complex communication needs stemming from stroke, traumatic brain injury, Alzheimer’s disease, Parkinson’s disease, dementia, and neurodegenerative diseases, such as multiple sclerosis and amyotrophic lateral sclerosis
In a meta-synthesis of 293 qualitative studies of chronic illness, Thorne et al (2002) concluded that the exclusion of individuals with diseases that influence verbal communication has rendered the diversity of chronic illness experiences invisible

Summary

Introduction

Patient experiences are an important source of evidence in nursing and health research and essential to designing and evaluating care and services. Health researchers using qualitative methods have relied heavily on participants’ verbal accounts with a preference for recruiting those who can describe their experiences at length, in detail, and with particular insight (DiCicco-Bloom & Crabtree, 2006). This has not classically included those with communication impairments. The first-hand experiences of individuals with acquired impairments that affect their ability to communicate have largely been absent from the literature (Carlsson et al, 2007; Laakso et al, 2011; Lloyd et al, 2006). When knowledge and understanding of individuals’ experiences are limited, responding adequately to their care or support needs is based on best guesses (Lloyd et al, 2006)

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