Attending to Marginalization in The Chronic Pain Literature: A Scoping Review.

Background: There has been a recent and, for many within the chronic pain space, long-overdue increase in literature that focuses on equity, diversity, inclusion, and decolonization (EDI-D) to understand chronic pain among people who are historically and structurally marginalized. Aims: In light of this growing attention in chronic pain research, we undertook a scoping review of studies that focus on people living with chronic pain and marginalization to map how these studies were carried out, how marginalization was conceptualized and operationalized by researchers, and identify suggestions for moving forward with marginalization and EDI-D in mind to better support people living with chronic pain. Methods: We conducted this scoping review using critical analysis in a manner that aligns with dominant scoping review frameworks and recent developments made to scoping review methodology as well as reporting guidelines. Results: Drawing on 67 studies, we begin with a descriptive review of the literature followed by a critical review that aims to identify fissures within the field through the following themes: (1) varying considerations of sociopolitical and socioeconomic contexts, (2) conceptual conflations between sex and gender, and (3) differing approaches to how people living with chronic pain and marginalization are described. Conclusion: By identifying strengths and limitations in the research literature, we aim to highlight opportunities for researchers to contribute to a more comprehensive understanding of marginalization in chronic pain experiences.

Contexte: La littérature mettant l'accent sur l'équité, la diversité, l'inclusion et la décolonisation (EDI-D) pour mieux comprendre la douleur chronique chez les personnes historiquement et structurellement marginalisées a récemment connu une augmentation, attendue depuis longtemps par de nombreux spécialistes de la douleur chronique.Objectifs: À la lumière de cette attention croissante dans la recherche sur la douleur chronique, nous avons entrepris un examen approfondi des études portant sur les personnes vivant avec une douleur chronique et la marginalisation, afin de déterminer comment ces études ont été menées, comment la marginalisation a été conceptualisée et opérationnalisée par les chercheurs, et de recenser des suggestions pour aller de l'avant en gardant à l'esprit la marginalisation et l'EDI-D afin de mieux soutenir les personnes vivant avec la douleur chronique.Méthodes: Nous avons mené cet examen de la portée en utilisant l'analyse critique, conformément aux cadres dominants et aux développements récents de la méthodologie de l'examen de la portée, ainsi qu'aux lignes directrices relatives aux rapports.Résultats: En nous appuyant sur 67 études, nous commençons par un examen descriptif de la littérature, suivi d'un examen critique visant à déterminer les lacunes dans le domaine, en fonction des thèmes suivants : (1) les diverses interprétations des contextes sociopolitiques et socioéconomiques, (2) les confusions conceptuelles entre sexe et genre, et (3) les approches différentes concernant la manière dont les personnes vivant avec la douleur chronique et la marginalisation sont décrites.Conclusions: En cernant les points forts et les limites de la littérature de recherche, nous visons à mettre en évidence les possibilités pour les chercheurs de contribuer à une meilleure compréhension de la marginalisation dans les expériences de douleur chronique.Abréviations: TUO : trouble lié à l'utilisation d'opioïdes; DSM-5 : Manuel diagnostique et statistique 5; BPI : Questionnaire concis sur la douleur; NIDA : National Institute on Drug Abuse; IASP : Association internationale pour l'étude de la douleur; MTUO : Médicaments pour le trouble lié à l'utilisation des opioïdes; EIQ : Écart interquartile.

Patient Responses to the Term Pain Catastrophizing: Thematic Analysis of Cross-sectional International Data.

Pain catastrophizing is understood as a negative cognitive and emotional response to pain. Researchers, advocates and patients have reported stigmatizing effects of the term in clinical settings and the media. We conducted an international study to investigate patient perspectives on the term pain catastrophizing. Open-ended electronic patient and caregiver proxy surveys were promoted internationally by collaborator stakeholders and through social media. 3,521 surveys were received from 47 countries (77.3% from the U.S.). The sample was mainly female (82.1%), with a mean age of 41.62 (SD 12.03) years; 95% reported ongoing pain and pain duration > 10 years (68.4%). Forty-five percent (n = 1,295) had heard of the term pain catastrophizing; 12% (n = 349) reported being described as a 'pain catastrophizer' by a clinician with associated high levels of feeling blamed, judged, and dismissed. We present qualitative thematic data analytics for responses to open-ended questions, with 32% of responses highlighting the problematic nature of the term. We present the patients' perspective on the term pain catastrophizing, its material effect on clinical experiences, and associations with negative gender stereotypes. Use of patient-centered terminology may be important for favorably shaping the social context of patients' experience of pain and pain care. PERSPECTIVE: Our international patient survey found that 45% had heard of the term pain catastrophizing, about one-third spontaneously rated the term as problematic, and 12% reported the term was applied to them with most stating this was a negative experience. Clinician education on patient-centered terminology may improve care and reduce stigma.

Chronic Struggle: An Institutional Ethnography of Chronic Pain and Marginalization.

There have been several recent calls to re-think chronic pain in response to the growing awareness of social inequities that impact the prevalence of chronic pain and its management. This in turn has resulted in new explorations of suffering as it relates to pain. While laudable, many of these clinically oriented accounts are abstract and often fail to offer a critical theoretical understanding of social and structural inequities. To truly rethink pain, we must also reconsider suffering, beginning in the everyday expert knowledge of people with chronic pain who can offer insights in relation to their bodies and also the organization of the social circumstances in which they live. Our team undertook a sociological approach known as institutional ethnography (IE) to explicate the work of people in managing lives beset by chronic pain and the inequities that stem from marginalization. In keeping with our critical paradigm, we describe participant accounts as situated, rather than lived, to de-emphasize the individual in favour of the social and relational. Through our analysis, we offer a new concept of chronic struggle to capture how pain, illness, economic deprivation, and suffering constitute a knot of experience that people living with chronic pain are obliged to simplify in order to fit existing logics of medicine. Our goal is to identify the social organization of chronic pain care which underpins experience in order to situate the social as political rather than medical or individual. PERSPECTIVE: This article explicates the health work of people living with chronic pain and marginalization, drawing on their situated experience. We offer the concept of chronic struggle as a conceptualization that allows us to bring into clear view the social organization of chronic pain in which the social is visible as political and structural rather than medical or individual.