Mapping the experiences and needs of deep brain stimulation for people with Parkinson’s disease and their family members

Abstract

BackgroundDeep brain stimulation (DBS) is an effective treatment for the motor symptoms of Parkinson’s disease (PD). The lived experience of people with PD suggests a process of adjustment follows. This study aimed to explore the adjustment and associated education and support needs of people with PD undergoing DBS and their family members across the continuum of the DBS experience.MethodA structured qualitative description study including semi-structured interviews with people with PD (n = 14), family members (n = 10) and clinicians (n = 11) was conducted to explore lived experiences, needs, perspectives and clinical considerations. Inductive analysis indicated common temporal stages related to undergoing DBS, and the related experiences and needs were mapped.FindingsFour stages, each with unique needs, emerged: Considering DBS involved needs for peer-based education and realistic, meaningful goal setting; Surgery and Support shifted to clinical support related to the surgery and support for the person and their family around immediate changes experienced; Seeking Stability focused on timely clinical and practical support for the person and family around new changes and challenges to symptoms, behaviours and roles; and Next Steps involved direction and support for reengagement in the self-management of the condition, and current and future changes related to PD.All participants with PD and their family members in this study indicated that overall their experiences with DBS had led to positive changes in their symptoms and lives. Consideration of different needs at different times in the process may be applied within clinical practice to support adjustment.

“Nothing to Lose, Absolutely Everything to Gain”: Patient and Caregiver Expectations and Subjective Outcomes of Deep Brain Stimulation for Treatment-Resistant Depression

“…There are limitations to contractual “disclose and sign” informed consent processes, notably that information presented preoperatively is later forgotten or goes unappreciated. There have been recommendations for more experiential and interactive forms of informed consent in DBS ( Bell et al, 2010 ; Liddle et al, 2019 ), that draw upon the knowledge of lived experience experts. Such a process could involve corrective feedback and use of narrative accounts from DBS recipients and their families (e.g., videos, written accounts).…”

“…As such, informed consent for this long-term and adaptable neurotechnology requires an iterative and ongoing process. This recommendation has previously been made for DBS in Parkinson’s disease ( Kubu et al, 2018 ; Liddle et al, 2019 ; Mosley et al, 2019 ), and is potentially more relevant in clinical trials of DBS for psychiatric conditions where the risks and benefits are less established.…”

“He’s Back so I’m Not Alone”: The Impact of Deep Brain Stimulation on Personality, Self, and Relationships in Parkinson’s Disease

“…Direct education from clinicians to patients and caregivers does not guarantee information is retained or ensure preparedness to manage changes (Mosley et al, 2019). More experiential information that uses the words and language of other PD patients and families has been suggested for improving comprehension and setting realistic expectations (Liddle et al, 2019). Our interviews demonstrated personal experiences from other DBS patients and families were well retained by participants and influential in establishing their expectations.…”

Impact of deep brain stimulation on people with Parkinson’s disease: A mixed methods feasibility study exploring lifespace and community outcomes

“…These included the stimulation adjustment process, development of new symptoms and the impact of changes, both positive and negative, on relationships and roles (Haahr et al, 2010). A more recent exploration of DBS experiences of people with Parkinson's indicated that particular education, clinical and support needs were experienced at different times (Liddle, Beazley, Gustafsson, & Silburn, 2019). Timely clinical support may be required to support adjustment and participation in meaningful occupations (Liddle et al, 2018(Liddle et al, , 2019.…”

“…A more recent exploration of DBS experiences of people with Parkinson's indicated that particular education, clinical and support needs were experienced at different times (Liddle, Beazley, Gustafsson, & Silburn, 2019). Timely clinical support may be required to support adjustment and participation in meaningful occupations (Liddle et al, 2018(Liddle et al, , 2019. The recovery period after DBS is a key transition time requiring a focus on occupational participation, health and wellbeing outcomes.…”