Why does your pain never get better? Stigma and coping mechanism in people with sickle cell disease

Abstract

Objectives: to analyze the characteristics of stigma in the interactions of people with pain and sickle cell disease and the coping strategies adopted. Methods: qualitative study, conducted in Bahia’s reference units between January and July 2018. In-depth interviews were applied to 25 adults, followed by content analysis and interpretation in light of the Sociological Theory of Stigma. Results: four categories emerged from the data: Stigma in interactions with family members; Stigma in interactions with people in the general public; Stigma in interactions with health workers; and Strategies for coping with stigma. Final Considerations: in the participants’ interactions, stigma produced discrediting pain reports, labeling and stereotyping, blaming patients for not improving their health, discrimination, racism, inadequate pain assessment, and delay in care. Coping included silencing, covering up, aggressive behavior, exposure to risk, reading religious texts and praises, and church attendance.

‘O outro’ da pandemia da Covid-19: ageísmo contra pessoas idosas em jornais do Brasil e do Chile

“…No entanto, a estigmatização acontece nas interações familiares a partir de atitudes de descrédito, desprezo e do emprego de adjetivos depreciativos que são assimilados pelas pessoas e conformam a autoimagem e uma identidade deteriorada da pessoa que deixa de atender às expectativas sociais. E o afastamento ou abandono por parte da família são comuns, especialmente em situações de dificuldades físicas que requeiram maior atenção e cuidado de proteção 42 . A necessidade do isolamento social favoreceu o descuidado e a solidão das pessoas idosas, perpetrado tanto por familiares quanto por atores sociais das mais variadas esferas públicas, como as instituições sociais e de saúde e a sociedade como um todo.…”

‘The other’ of the COVID-19 pandemic: ageism toward the elderly people in newspapers in Brazil and Chile

“…However, stigmatization takes place in family interactions from attitudes of discredit, contempt and the use of derogatory adjectives that are assimilated by people and shape the self-image and a deteriorated identity of the person who fails to meet social expectations. And the removal or abandonment by the family is common, especially in situations of physical difficulties that require greater attention and protective care 42 . The need for social isolation favored the carelessness and loneliness of the elderly, perpetrated both by family members and by social actors from the most varied public spheres, such as social and health institutions and society as a whole.…”

Individuals with Sickle Cell Disease Using SBAR as a Communication Tool: A Pilot Study

“…They report the stress, sadness, and anger associated with their interactions with HCPs as secondary to racial bias [ 9 ]. The health-related stigma of individuals with SCD can be related to discrediting pain reports, labeling and stereotyping, blaming patients for not improving their health, discrimination, racism, inadequate pain assessment, and delays in care [ 11 ]. The behavior of these patients may also be perceived as being pain medicine or drug-seeking by HCPs with negatively biased attitudes surrounding pain and pain management, leading to improper assessments and management of these patients.…”

“…The behavior of these patients may also be perceived as being pain medicine or drug-seeking by HCPs with negatively biased attitudes surrounding pain and pain management, leading to improper assessments and management of these patients. As a result, patients with SCD report discrimination by HCPs, such as poor treatment, and feel that their concerns are not prioritized [ 11 , 12 ]. Negative interaction with HCPs can also lead to adaptive care seeking, such as silence or aggressive behaviors [ 11 ].…”

“…As a result, patients with SCD report discrimination by HCPs, such as poor treatment, and feel that their concerns are not prioritized [ 11 , 12 ]. Negative interaction with HCPs can also lead to adaptive care seeking, such as silence or aggressive behaviors [ 11 ]. Individuals with SCD report delaying care due to past experiences with HCPs [ 7 ].…”