Gender Aware PD Care 149 6 Introduction There is emerging evidence of Parkinson disease (PD) is the fastest growing neurological disorder worldwide. The global number of people with PD is projected to exceed 12 million by 2040.1 Due to the chronic and progressive nature of PD, the development of interventions that can delay disability and enable people with PD to continue participating in activities and social roles is considered a key priority in PD research.2 Gender is progressively recognised as a relevant social determinant of health in people with PD, but its multidimensional operationalisation in biomedical research is challenging.3 A recent study demonstrated that different gender dimensions, such as gender identity, gendered social norms, roles and relations, have a heterogenous impact on the quality of life of people with PD, emphasising the importance of a precise study of distinct gender dimensions in the context of PD.4 In fact, previous research has shown that the adherence to traditional gender norms, and their related roles, is a stronger predictor of health outcomes than gender identity, and that norms related to gender influence the illness experiences of people with PD.4–7 Gender norms include cultural beliefs and expectations about how people with different gender identities should act and interact with each other, and are part of a gendered socialisation and stereotyping process.8 Investigating gender norms in healthcare settings, thus, focuses on the presence of social expectations and beliefs attributed to gender that can affect health and health outcomes among particular patient populations. Given the impact of gender norms and expectations on social roles, investigating the particular role of gender norms in illness experiences of people with PD is imperative.5 Understanding how gender norms affect health and illness experiences of people with PD is essential for the design of programs and policies that combat harmful norms and improve gender equality in health.9,10 However, a recent review of health interventions that addressed detrimental gendered norms and stereotypes concluded that longitudinal data on their effectiveness is currently lacking.11 The review reported that most of the initiatives designed to shift attitudes and behaviours regarding gendered stereotypes and norms rely too much on self-reported survey data that may be subjected to social desirability bias and the use of participant observations and key informant feedback would strengthen evaluations. Accurately capturing the impact of gender norms on health is a complex matter as these social norms are dependent on socio-cultural context, time and place.12 Surveys used in biomedical research often include proxy measures to investigate how gender norms can affect health but they
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