Exploring how people with chronic pain understand their pain: a qualitative study

Abstract

Objectives A fundamental principle of pain management is educating patients on their pain using current neuroscience. However, current pain neurophysiology education (PNE) interventions show variable success in improving pain outcomes, and may be difficult to integrate with existing understanding of pain. This study aimed to investigate how people with chronic pain understand their pain, using qualitative exploration of their conceptualisations of pain, and how this understanding accommodated, or resisted, the messages of PNE. Methods Twelve UK adults with chronic pain were recruited through advertisements on online pain networks. Semi-structured interviews were conducted remotely, with responses elicited using the Grid Elaboration Method (GEM) and then a PNE article. Participants’ grid elaborations and responses to PNE were analysed using thematic analysis (TA). Results Three main themes were extracted from participants' grid elaborations: communicating pain, explaining pain and living with pain. These themes incorporated varied, inconsistent sub-themes: of pain as simultaneously experiential and conceptual; in the body and in the mind; diagnosable and inexplicable; manageable and insuperable. Generalised, meta-level agreement was identified in participants' PNE responses, but with doubts about its practical value. Conclusions This study shows that people understand pain through inconsistent experiential models that may resist attempts at conceptual integration. Participants' elaborations showed diverse and dissonant conceptualisations, with experiential themes of restricted living; assault on the self; pursuit of understanding pain and abandonment of that pursuit. Responses, although unexpectedly compatible with PNE, suggested that PNE was perceived as intellectually engaging but practically inadequate. Experiential disconfirmation may be required for behavioural change inhibited by embedded fears and aversive experiences. Ethical committee number UCL REC# 17833/003.

From Challenge to Opportunity: Virtual Qualitative Research During COVID-19 and Beyond

“…Virtual-focus-group participants also reported enjoying having their voices heard and connecting with others during the pandemic ( Lathen & Laestadius, 2021 ). In emergent virtual methods (below) too, participants have reported positive experiences, finding interviews “helpful” as “sounding boards” ( Keen et al, 2021 ). Participant expressions of enjoyment and feeling heard are also prevalent in face-to-face interviews, suggesting commonality with digital adaptations.…”

“…Another study transposed the full GEM interview format online, through real-time video calls. It examined how people with chronic pain conceptualized it, inviting participants to fill in paper grids remotely ( Keen et al, 2021 ). Participants could photograph their completed grid and email it to the researcher, or hold it to camera to be screenshotted by the researcher.…”

“…Participants have printed, signed, scanned and emailed consent forms, or simply e-signed them. This may deter those, particularly older, participants less familiar with technology – as in Keen et al (2021) – yet the growing popularity of video calling may be increasing the comfort of older people with technological tasks.…”

“…Factors influencing the quality of the data collection, such as systematicity in the application of interview procedures and participant-researcher real-time rapport, can be fulfilled through virtual methods. Participant choice regarding the setting in which they are interviewed, provision of clear instructions and establishment of online rapport have facilitated extended elaborations for detailed thematic analyses ( Keen et al, 2021 ; Roberts et al, 2021 ).…”

How the home features in young adults’ representations of loneliness: The impact of COVID‐19

“…Moreover, as research evolves, we recognize that interviews can be conducted remotely, for example, on platforms such as zoom. Thus, future research should prioritize the use of virtual methods for elaboration of free association data, such as that generated by the GEM (Keen et al, 2021 ). This could provide a unique opportunity to study hard to reach communities.…”