General Discussion 207 8 Key findings Chapter 2 provides a rapid review of the impact of sex and gender on Parkinson’s disease (PD). It emphasizes the need for multidisciplinary care and highlights examples where sex- and gender-related differences have been reported. The chapter also calls for a clear definition and operationalization of gender as a multidimensional construct in PD research. Chapter 3 focused on the impact of different gender dimensions on the health-related quality of life (HRQoL) of people with PD. The study showed that gender identity did not significantly affect overall HRQoL, but an androgynous gender role and higher engagement in household tasks were associated with a better HRQoL. This highlights the importance of precise measures for distinct gender dimensions to inform targeted gender-sensitive interventions. In Chapter 4, a qualitative study explored how gender identity and associated social roles impacted the subjective illness experiences of people with PD. While most participants did not consider genderrelated aspects highly salient, once probed, several stereotypical views were described related to visibility of PD, coping with emotional experiences, help-seeking behaviours, social role patterns, and physical appearances. Preferences for the gender identity of healthcare providers are also discussed, with participants expressing preferences for women providers which were related to the practice of attributed feminine traits during consultations and physical examinations. Chapter 5 reviewed the use of human-centred design (HCD) methodologies in health innovation. HCD approaches prioritize patients’ lived experiences and engage them in the research and design process. The chapter provides an overview of currently applied methodologies and HCD guidelines. Building on the HCD review, Chapter 6 describes a novel design-based study that investigated the role of gender norms and stereotypes in the illness experiences of men and women with PD. The study found that gendered stereotypes, such as the perception of PD as an old men’s disease, impacted both men’s and women’s individuals’ experiences. Recommendations for gender-aware PD care focus on addressing restrictive gender norms and stereotypes in different life stages and patient-provider relationships. Chapter 7 proposes the use of multimethod approaches, including qualitative, quantitative, and design-based methods, to investigate the multiple dimensions of gender in PD research. It suggests moving beyond solely relying on self-reported gender identity and instead exploring the interrelationships between gender identities, contextual gender norms and roles, and their impact on health outcomes. The chapter advocates for an ethnographic inquiry followed by hypothesis formulation and quantitative testing.
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