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Gender-aware Parkinson’s care: a design-based study of patient perspectives on gender norms and gender-sensitive care

BACKGROUND: Gender dimensions are progressively recognised as a relevant social determinant of health in people with Parkinson’s disease (PD). However, little is known about the impact of gender norms and stereotypes on illness experiences of men and women with PD and what they consider important fo...

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Autores principales: Göttgens, Irene, Modderkolk, Linda, Vermuë, Paula, Darweesh, Sirwan K.L., Bloem, Bastiaan R., Oertelt-Prigione, Sabine
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Elsevier 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10590864/
https://www.ncbi.nlm.nih.gov/pubmed/37876997
http://dx.doi.org/10.1016/j.eclinm.2023.102285
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author Göttgens, Irene
Modderkolk, Linda
Vermuë, Paula
Darweesh, Sirwan K.L.
Bloem, Bastiaan R.
Oertelt-Prigione, Sabine
author_facet Göttgens, Irene
Modderkolk, Linda
Vermuë, Paula
Darweesh, Sirwan K.L.
Bloem, Bastiaan R.
Oertelt-Prigione, Sabine
author_sort Göttgens, Irene
collection PubMed
description BACKGROUND: Gender dimensions are progressively recognised as a relevant social determinant of health in people with Parkinson’s disease (PD). However, little is known about the impact of gender norms and stereotypes on illness experiences of men and women with PD and what they consider important focal points for gender-sensitive PD care. METHODS: We conducted two equity-centred design (ECD) sessions on December 7, 2022 and December 8, 2022, at the Radboud University Medical Centre in the Netherlands. This participatory multi-method approach includes patients in the research and design process and was used to explore the impact of gender norms and stereotypes in illness experiences and generate patient-driven recommendations for gender-aware Parkinson’s care. Quantitative survey data and design-based data were descriptively analysed, and qualitative focus group discussions were thematically analysed. FINDINGS: This study included thirteen men and fifteen women with PD in the Netherlands. All participants were of Dutch descent, with a median age of 65.5 years and a median clinical disease duration of 4.2 years. The gendered stereotype that “people with PD are old men” affected both men’s and women’s perception of living with the disease and the perceptions of their social environment. Men described masculine stereotypes related to physical strength and provider roles, while women expressed those related to feminine physical appearance and caregiver roles, influencing their illness experiences. For some, these norms influenced personal behaviours, while for others, they affected experiences through societal attitudes. INTERPRETATION: Our findings suggested that several gender norms and stereotypes influence the illness experiences of men and women with PD, manifesting at ideological, interpersonal, and internalised levels. Some participants internalised these norms, affecting their coping behaviours, while others encountered them in broader ideological contexts that shaped societal attitudes and interpersonal relationships. To advance gender sensitive PD care, it's essential to explore the impact of gender roles and norms, especially regarding how they might impede coping strategies, care access and utilisation for individuals of diverse gender identities. FUNDING: The Gatsby Foundation and co-funded by the PPP Allowance by 10.13039/100016036Health∼Holland. Travel reimbursements for participants were made available through a 10.13039/100013301Parkinson's Foundation grant (PF-FBS-2026).
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spelling pubmed-105908642023-10-24 Gender-aware Parkinson’s care: a design-based study of patient perspectives on gender norms and gender-sensitive care Göttgens, Irene Modderkolk, Linda Vermuë, Paula Darweesh, Sirwan K.L. Bloem, Bastiaan R. Oertelt-Prigione, Sabine eClinicalMedicine Articles BACKGROUND: Gender dimensions are progressively recognised as a relevant social determinant of health in people with Parkinson’s disease (PD). However, little is known about the impact of gender norms and stereotypes on illness experiences of men and women with PD and what they consider important focal points for gender-sensitive PD care. METHODS: We conducted two equity-centred design (ECD) sessions on December 7, 2022 and December 8, 2022, at the Radboud University Medical Centre in the Netherlands. This participatory multi-method approach includes patients in the research and design process and was used to explore the impact of gender norms and stereotypes in illness experiences and generate patient-driven recommendations for gender-aware Parkinson’s care. Quantitative survey data and design-based data were descriptively analysed, and qualitative focus group discussions were thematically analysed. FINDINGS: This study included thirteen men and fifteen women with PD in the Netherlands. All participants were of Dutch descent, with a median age of 65.5 years and a median clinical disease duration of 4.2 years. The gendered stereotype that “people with PD are old men” affected both men’s and women’s perception of living with the disease and the perceptions of their social environment. Men described masculine stereotypes related to physical strength and provider roles, while women expressed those related to feminine physical appearance and caregiver roles, influencing their illness experiences. For some, these norms influenced personal behaviours, while for others, they affected experiences through societal attitudes. INTERPRETATION: Our findings suggested that several gender norms and stereotypes influence the illness experiences of men and women with PD, manifesting at ideological, interpersonal, and internalised levels. Some participants internalised these norms, affecting their coping behaviours, while others encountered them in broader ideological contexts that shaped societal attitudes and interpersonal relationships. To advance gender sensitive PD care, it's essential to explore the impact of gender roles and norms, especially regarding how they might impede coping strategies, care access and utilisation for individuals of diverse gender identities. FUNDING: The Gatsby Foundation and co-funded by the PPP Allowance by 10.13039/100016036Health∼Holland. Travel reimbursements for participants were made available through a 10.13039/100013301Parkinson's Foundation grant (PF-FBS-2026). Elsevier 2023-10-17 /pmc/articles/PMC10590864/ /pubmed/37876997 http://dx.doi.org/10.1016/j.eclinm.2023.102285 Text en © 2023 The Author(s) https://creativecommons.org/licenses/by/4.0/This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).
spellingShingle Articles
Göttgens, Irene
Modderkolk, Linda
Vermuë, Paula
Darweesh, Sirwan K.L.
Bloem, Bastiaan R.
Oertelt-Prigione, Sabine
Gender-aware Parkinson’s care: a design-based study of patient perspectives on gender norms and gender-sensitive care
title Gender-aware Parkinson’s care: a design-based study of patient perspectives on gender norms and gender-sensitive care
title_full Gender-aware Parkinson’s care: a design-based study of patient perspectives on gender norms and gender-sensitive care
title_fullStr Gender-aware Parkinson’s care: a design-based study of patient perspectives on gender norms and gender-sensitive care
title_full_unstemmed Gender-aware Parkinson’s care: a design-based study of patient perspectives on gender norms and gender-sensitive care
title_short Gender-aware Parkinson’s care: a design-based study of patient perspectives on gender norms and gender-sensitive care
title_sort gender-aware parkinson’s care: a design-based study of patient perspectives on gender norms and gender-sensitive care
topic Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10590864/
https://www.ncbi.nlm.nih.gov/pubmed/37876997
http://dx.doi.org/10.1016/j.eclinm.2023.102285
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