Chronic Struggle: An Institutional Ethnography of Chronic Pain and Marginalization

Webster, Fiona; Connoy, Laura; Sud, Abhimanyu; Rice, Kathleen; Katz, Joel; Pinto, Andrew D.; Upshur, Ross; Dale, Craig

doi:10.1016/j.jpain.2022.10.004

Cited by 9 publications

(8 citation statements)

References 44 publications

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“…Thus, institutional ethnographers talk to secondary informants, they collect the documents used or discussed by the informants and map the work, the texts and the people involved. As done by other institutional ethnographies [e.g., 44 – 48 ], this article focuses only on results from the first level of analysis [ 49 ]. Indeed, second level analysis will be published elsewhere.…”

Section: Methodsmentioning

confidence: 99%

Tensions experienced by case managers working in home care for older adults in Quebec: first level analysis of an institutional ethnography

Ethier,

Dubois,

Savaria

et al. 2024

BMC Health Serv Res

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Background Case managers play a vital role in integrating the necessary services to optimise health-related goals and outcomes. Studies suggest that in home care, case managers encounter tensions in their day-to-day work, that is, disjuncture between what they should do, in theory, and what they actually do, in practice. However, direct exploration of these tensions is lacking. As such, this study aimed to describe the tensions encountered by case managers in public home care for older adults in Quebec and their influence on day-to-day work. Methods An institutional ethnography was conducted through observations of work, interviews and a survey with case managers working in home care in Quebec. Data were analysed using institutional ethnography first-level analysis procedures. This included mapping the work sequences as well as identifying the tensions experienced by case managers through the words they used. Results Three main tensions were identified. First, case managers perceive that, despite working to return hospitalised older adults at home safely, their work also aims to help free up hospital beds. Thus, they often find themselves needing to respond quickly to hospital-related inquiries or expedite requests for home care services. Second, they are supposed to delegate the care to “partners” (e.g., private organisations). However, they feel that they are in effect managing the quality of the services provided by the “partners.” Consequently, they go to great lengths to ensure that good care will be provided. Finally, they must choose between meeting organisational requirements (e.g., reporting statistics about the work, documenting information in the older adults’ file, doing mandatory assessments) and spending time providing direct care. This often leads to prioritising direct care provision over administrative tasks, resulting in minimal reporting of essential information. Conclusion The results are discussed using the three lenses of professional practice context analyses (i.e., accountability, ethics, and professional-as-worker) to formulate recommendations for practice and research. They suggest that, despite their important role, case managers have limited power in home care (e.g., with partners, with the hospital).

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Section: Methodsmentioning

confidence: 99%

Tensions experienced by case managers working in home care for older adults in Quebec: first level analysis of an institutional ethnography

Ethier,

Dubois,

Savaria

et al. 2024

BMC Health Serv Res

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“…Terminology around concepts such as ‘working class’, ‘difficulty making ends meet’ and ‘socioeconomic deprivation’; ‘disabled’ or in receipt of ‘disability benefits’; ‘ethnic minority groups’ or ‘racialised groups’; and LGBTQIA + identification would benefit from input with relevant groups and knowledgeable about the local context, in addition to consideration of approaches other researchers have used. 26,36,56,57 Following recruitment, data collection of demographics/social identities may be complex. Brady et al 19,52 offer a good example of brief initial interviews that were undertaken to collect intersectional data.…”

Section: Data Collectionmentioning

confidence: 99%

“…By using intersectionality as a theoretical framework, we are better able to embrace the necessary complexity for researching chronic pain, and pain care, equitably. The use of a reductionist frame can force unachievable objectivity on to complex health concepts, and there is an increasing realisation in the field that we need to understand the individual within the social world, 26 hence the intersectional perspective of social identities conceptualised with associated oppressions. We must further recognise that each step of the research process is more subjective than we often think 48 and, by overstating claims of objectivity, we put at risk our ability to make a difference in the real world and to the people who need both research and clinical focus the most.…”

Section: Future Directions and Conclusionmentioning

confidence: 99%

“…4,20,21 The contribution of distress to chronicity of pain is well established and accepted 15,[22][23][24] and this includes adverse childhood experiences 25 and different forms of oppression. 18,26 Racism and the gendered nature of violence and trauma can add to more established social determinants of health, with distress negatively impacting on health via multiple biological mechanisms. 27 Chronic pain is a long-term condition, typically experienced alongside other comorbidities, and therefore brings condition management 'work', which can include coordination and execution of tasks associated with managing the condition, emotional management and motivation, negotiation and coordination with healthcare, and biographical work (navigating a challenge to identity and the contrast with life before chronic pain).…”

Section: Introduction To Chronic Painmentioning

confidence: 99%

“…4,20,21 The contribution of distress to chronicity of pain is well established and accepted 15,22–24 and this includes adverse childhood experiences 25 and different forms of oppression. 18,26 Racism and the gendered nature of violence and trauma can add to more established social determinants of health, with distress negatively impacting on health via multiple biological mechanisms. 27…”

Section: Introduction To Chronic Painmentioning

confidence: 99%

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Intersectionality as a theoretical framework for researching health inequities in chronic pain

Macgregor

Walumbe

Tulle

et al. 2023

British Journal of Pain

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Chronic pain is experienced unequally by different population groups; we outline examples from the pain literature of inequities related to gender, ethnicity, socioeconomic and migration status. Health inequities are systematic, avoidable and unfair differences in health outcomes between groups of people, with the fundamental ‘causes of causes’ recognised as unequal distribution of income, power and wealth. Intersectionality can add further theory to health inequities literature; collective social identities including class/socioeconomic status, race/ethnicity, gender, migration status, age, sexuality and disabled status intersect in multiple interconnected systems of power leading to differing experiences of privilege and oppression which can be understood as axes of health inequities. The process of knowledge creation in pain research is shaped by these interconnected systems of power, and may perpetuate inequities in pain care as it is largely based on majority white, middle class, Eurocentric populations. Intersectionality can inform research epistemology (ways of knowing), priorities, methodology and methods. We give examples from the literature where intersectionality has informed a justice oriented approach across different research methods and we offer suggestions for further development. The use of a reductionist frame can force unachievable objectivity on to complex health concepts, and we note increasing realisation in the field of the need to understand the individuals within their social world, and recognise the fluid and contextual nature of this.

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“We were all looking for the magic pill”: A qualitative study of patient experiences using gabapentinoids for chronic pain

McNeilage

Ashton‐James

Scholz

2023

International Journal of Drug Policy

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Chronic Struggle: An Institutional Ethnography of Chronic Pain and Marginalization

Cited by 9 publications

References 44 publications

Tensions experienced by case managers working in home care for older adults in Quebec: first level analysis of an institutional ethnography

Tensions experienced by case managers working in home care for older adults in Quebec: first level analysis of an institutional ethnography

Intersectionality as a theoretical framework for researching health inequities in chronic pain

“We were all looking for the magic pill”: A qualitative study of patient experiences using gabapentinoids for chronic pain

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