"The healthcare system did fail me repeatedly": a qualitative study on experiences of healthcare among Canadian women with Cushing's syndrome.
Cushing’s
Medical gaslighting
Patient centered Care
Qualitative research
Weight stigma
Journal
BMC primary care
ISSN: 2731-4553
Titre abrégé: BMC Prim Care
Pays: England
ID NLM: 9918300889006676
Informations de publication
Date de publication:
05 Sep 2024
05 Sep 2024
Historique:
received:
21
01
2024
accepted:
21
08
2024
medline:
6
9
2024
pubmed:
6
9
2024
entrez:
5
9
2024
Statut:
epublish
Résumé
As a rare endocrine disorder, Cushing's Syndrome (Cushing's) is characterized by numerous symptoms and a non-specific presentation, leading to a delay to diagnosis for patients with this disease. To date, research examining the lived experiences of patients with Cushing's in healthcare is absent in the literature. This preliminary inquiry into the healthcare experiences of women with Cushing's aimed to examine the utility of this line of inquiry to support the patient centered care of individuals with Cushing's. Seven women from across Canada with endogenous Cushing's participated in the study. Semi-structured interviews were conducted examining participants' healthcare and body-related experiences with Cushing's. Results pertaining to healthcare experiences were analyzed for the current study using reflexive thematic analysis. Four themes emerged whereby women with Cushing's experienced (1) a lack of patient centered care, characterized by provider miscommunication and medical gaslighting; (2) a misunderstanding of their symptoms as related to weight gain; (3) weight stigma in healthcare encounters; and (4) a shift in their quality of care following diagnosis. The results highlight the importance of patient centered care as well as the negative impact of commonly reported barriers to patient centered care. Cushing's specific barriers to patient centered care may include weight stigma as well as the rare incidence of Cushing's. Further research is needed to better understand the healthcare experiences of people with Cushing's in Canada.
Sections du résumé
BACKGROUND
BACKGROUND
As a rare endocrine disorder, Cushing's Syndrome (Cushing's) is characterized by numerous symptoms and a non-specific presentation, leading to a delay to diagnosis for patients with this disease. To date, research examining the lived experiences of patients with Cushing's in healthcare is absent in the literature. This preliminary inquiry into the healthcare experiences of women with Cushing's aimed to examine the utility of this line of inquiry to support the patient centered care of individuals with Cushing's.
METHODS
METHODS
Seven women from across Canada with endogenous Cushing's participated in the study. Semi-structured interviews were conducted examining participants' healthcare and body-related experiences with Cushing's. Results pertaining to healthcare experiences were analyzed for the current study using reflexive thematic analysis.
RESULTS
RESULTS
Four themes emerged whereby women with Cushing's experienced (1) a lack of patient centered care, characterized by provider miscommunication and medical gaslighting; (2) a misunderstanding of their symptoms as related to weight gain; (3) weight stigma in healthcare encounters; and (4) a shift in their quality of care following diagnosis.
CONCLUSIONS
CONCLUSIONS
The results highlight the importance of patient centered care as well as the negative impact of commonly reported barriers to patient centered care. Cushing's specific barriers to patient centered care may include weight stigma as well as the rare incidence of Cushing's. Further research is needed to better understand the healthcare experiences of people with Cushing's in Canada.
Identifiants
pubmed: 39237868
doi: 10.1186/s12875-024-02580-5
pii: 10.1186/s12875-024-02580-5
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
329Informations de copyright
© 2024. The Author(s).
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