The salience of gender in the illness experiences and care preferences of people with Parkinson's disease.

RATIONALE

In recent years, interest in sex characteristics and gender dimensions of Parkinson's disease (PD) has increased. Yet, much remains to be understood about how gender-related aspects specifically impact the illness and experiences of care in persons living with PD.

OBJECTIVE

The purpose of this study was to explore the salience of gender-related aspects in the illness experiences and care provision preferences of people with PD.

METHODS

A descriptive qualitative study including semi-structured life story interviews was conducted with men and women living with PD in the Netherlands. Between September 2020 and February 2021, forty people with PD (20 men and 20 women) participated in digital interviews of which thirty-one (18 men and 13 women) were included in the thematic analyses for this specific study.

RESULTS

Overall, most participants did not consider gender-related aspects salient towards their illness experiences. However, when prompted, a number of participants described several stereotypical views about gender as related to the visibility of PD, emotional experiences, help seeking, role patterns and physical appearance. While most men and women with PD did not express specific gender-related preferences for their healthcare providers, those that did, all preferred women as healthcare providers. These preferences were generally related to attributed feminine traits which are considered relevant in routine, particularly sensitive, physical examinations of people with PD.

CONCLUSION

This study demonstrates that although every person has a gender identity, the salience attributed to gender varies with illness experiences and in care provision preferences between people with PD. These findings highlight the need for precise and personalized methodologies to capture more nuanced insights into the impact of gender dimensions on PD. Furthermore, drivers behind gender-related preferences in care provision are multifactorial and warrant further investigation among people with PD.