Table 1

Key characteristics of included papers

First authorYear publishedCountryStudy focus/aim*ParticipantsData collection methodData collection time pointAnalysis method
Haahr et al262011DenmarkTo explore patients' life world and way of managing life with advanced PD prior to DBS and what they expect from life following this treatment11 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 interviewsPre-DBS: ∼2 weeks prior to surgeryGuided by the hermeneutic phenomenological methodology of van Manen
Agid et al112006FranceTo understand the personal, familial and social difficulties experienced by patients with PD following neurosurgery29 patients; mean age 52.4 years; mean disease duration 10.8 yearsAudio recorded repeated in-depth open interviewsPre-DBS and post-DBS at two time points: prior to and 24 months after surgeryNot reported
Haahr et al272013DenmarkTo explore the lived experience of being a spouse to a person living with advanced PD, before and during the first year of DBS9 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 interviewsPre-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
Gisquet192008FranceTo understand the personal, familial and professional difficulties experienced by patients in France who have a neurodegenerative disease and undergo cerebral implants30 participants; 17 men, 13 women; age range 39–79 yearsAudio recorded cross-sectional interviewsPre-DBS and post-DBS at 3 time points: prior to surgery, 1 day to 6 months and at least 2 years after surgeryThematic analysis
Haahr et al242010DenmarkTo explore and describe the lived experience of patients living with advanced PD during the first year of treatment with DBS9 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 interviewsPost-DBS at 3 time points: 6–8 weeks, 6 and 12 months after surgeryGuided by the hermeneutic phenomenological methodology of van Manen
Ahlberg et al252011SwedenTo explore perspectives of the way patients speech and communication changed as a result of subthalamic nucleus DBS treatment for PD4 participants; 2 men, 2 women; aged 61–79 years; years since onset 10–32 yearsVideo recorded cross-sectional semistructured interviews in the participant's homePost-DBS at 1 time point: at least 2 years after surgery (range 2–10 years)Qualitative content analysis
Hariz and Hamberg282014SwedenTo explore patients with PD own perceptions of living with an implanted device42 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.