Exploring gendered experiences of Parkinson’s disease patients and their carers: implications for decision-making in Deep Brain Stimulation

The decision to undergo Deep Brain Stimulation (DBS) for Parkinson's disease (PD) is influenced by expectations, concerns, and gendered experiences. This study explores how patients and carers navigate the DBS decision-making process, focusing on gender-specific motivations, fears, and caregiving dynamics. In-depth interviews were conducted with 12 patients (5 females, 7 males) and 11 carers (6 females, 5 males) to explore their lived experiences with PD and DBS decision-making. A hybrid inductive-deductive thematic analysis was applied to identify key patterns. PD gradually disrupts daily life-men primarily struggle with work and independence, while women experience emotional and social withdrawal. Female carers report greater emotional strain and sacrifices, whereas male carers focus on their partners' independence. DBS is viewed as a last resort, offering hope for (1) symptom relief, (2) psychological freedom, and (3) social reintegration. Women fear symptom worsening and surgical vulnerability, while men worry about treatment efficacy and surgery duration. Female carers prioritize patient independence, while male carers view DBS as vital for family stability. Our study highlights gendered differences in how PD impacts daily life and caregiving, with women experiencing more emotional and social challenges. Motivations for DBS were similar across genders, but men and women expressed distinct concerns, emphasizing the need for gender-sensitive treatment approaches. This study advocates for integrating gender-sensitive approaches in clinical care to enhance support, improve decision-making, and facilitate postoperative adaptation to DBS.