Key characteristics of included papers
| First author | Year published | Country | Study focus/aim* | Participants | Data collection method | Data collection time point | Analysis method |
|---|---|---|---|---|---|---|---|
| Haahr et al26 | 2011 | Denmark | To explore patients' life world and way of managing life with advanced PD prior to DBS and what they expect from life following this treatment | 11 participants; 8 men, 3 women; mean age at time of DBS 60 years (range 47–67); mean age at disease onset 46 years (range 30–55); mean disease duration 15 years (range 7–29) | Audio recorded in-depth interviews | Pre-DBS: ∼2 weeks prior to surgery | Guided by the hermeneutic phenomenological methodology of van Manen |
| Agid et al11 | 2006 | France | To understand the personal, familial and social difficulties experienced by patients with PD following neurosurgery | 29 patients; mean age 52.4 years; mean disease duration 10.8 years | Audio recorded repeated in-depth open interviews | Pre-DBS and post-DBS at two time points: prior to and 24 months after surgery | Not reported |
| Haahr et al27 | 2013 | Denmark | To explore the lived experience of being a spouse to a person living with advanced PD, before and during the first year of DBS | 9 spouses of patients with PD; 3 men, 6 women; mean age of the spouses at their partners’ disease onset 46 years (range 27–61); mean age of the spouses at the time of their partners’ treatment with DBS 61 years (range 41–76) | Audio recorded longitudinal qualitative in-depth interviews | Pre-DBS and post-DBS at 4 time points: 2–4 weeks prior to surgery, 6 weeks, 6 months and 12 months after surgery | Thematic analysis influenced by the hermeneutic phenomenological methodology of van Manen |
| Gisquet19 | 2008 | France | To understand the personal, familial and professional difficulties experienced by patients in France who have a neurodegenerative disease and undergo cerebral implants | 30 participants; 17 men, 13 women; age range 39–79 years | Audio recorded cross-sectional interviews | Pre-DBS and post-DBS at 3 time points: prior to surgery, 1 day to 6 months and at least 2 years after surgery | Thematic analysis |
| Haahr et al24 | 2010 | Denmark | To explore and describe the lived experience of patients living with advanced PD during the first year of treatment with DBS | 9 participants†; 6 men and 3 women; mean age at DBS 61 years (range 47–67); mean disease duration 15 years (range 7–29) | Audio recorded longitudinal qualitative in-depth interviews | Post-DBS at 3 time points: 6–8 weeks, 6 and 12 months after surgery | Guided by the hermeneutic phenomenological methodology of van Manen |
| Ahlberg et al25 | 2011 | Sweden | To explore perspectives of the way patients speech and communication changed as a result of subthalamic nucleus DBS treatment for PD | 4 participants; 2 men, 2 women; aged 61–79 years; years since onset 10–32 years | Video recorded cross-sectional semistructured interviews in the participant's home | Post-DBS at 1 time point: at least 2 years after surgery (range 2–10 years) | Qualitative content analysis |
| Hariz and Hamberg28 | 2014 | Sweden | To explore patients with PD own perceptions of living with an implanted device | 42 participants; 31 men, 11 women; mean age at DBS 61.3 years (range 41–79); mean age at interview 64.1 years (range 44–81); mean age at diagnosis 52.6 years (range 33–70) | Audio recorded cross-sectional semistructured interviews either face to face in the participant's home/at the hospital or via telephone (n=5) | Post-DBS at 1 time point: mean 2.8 years after surgery (range 0.5–8 years) | Similarities and differences in technique in grounded theory |
*As described in the papers.
†Same participants as Haahr et al26 (Haahr et al27 includes spouses from the same data set).
DBS, deep brain stimulation; PD, Parkinson's disease.