title: Perceptions of living with a device-based treatment: an account of patients treated with deep brain stimulation for Parkinson's disease.
abstract: OBJECTIVE
  Deep brain stimulation (DBS) is an established treatment for Parkinson's disease. Little is known about patients' own perceptions of living with the implanted hardware. We aimed to explore patients' own perceptions of living with an implanted device.
  
  
  METHODS
  Semistructured interviews with open-ended questions were conducted with 42 patients (11 women) who had been on DBS for a mean of three years. The questions focused on patients' experiences of living with and managing the DBS device. The interviews were transcribed verbatim and analyzed according to the difference and similarity technique in grounded theory.
  
  
  RESULTS
  From the patients' narratives concerning living with and managing the DBS device, the following four categories emerged: 1) The device-not a big issue: although the hardware was felt inside the body and also visible from outside, the device as such was not a big issue. 2) Necessary carefulness: Patients expressed the need to be careful when performing certain daily activities in order not to dislocate or harm the device. 3) Continuous need for professional support: Most patients relied solely on professionals for fine-tuning the stimulation rather than using their handheld controller, even if this entailed numerous visits to a remote hospital. 4) Balancing symptom relief and side-effects: Patients expressed difficulties in finding the optimal match between decrease of symptoms and stimulation-induced side-effects.
  
  
  CONCLUSIONS
  The in-depth interviews of patients on chronic DBS about their perceptions of living with an implanted device provided useful insights that would be difficult to capture by quantitative evaluations.
authors.affiliation: Department of Community Medicine and Rehabilitation, Occupational Therapy, Umeå University, Umeå, Sweden; Department of Clinical Neuroscience, Umeå University, Umeå, Sweden.
authors.forename: Gun-Marie
authors.initials: GM
authors.lastname: Hariz
authors.forename: Katarina
authors.initials: K
authors.lastname: Hamberg
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D046690:Deep Brain Stimulation / Q000009:adverse effects / Q000451:nursing / Q000523:psychology*; D004867:Equipment Design; D004868:Equipment Failure; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010300:Parkinson Disease / Q000523:psychology / Q000628:therapy*; D010342:Patient Acceptance of Health Care; D036301:Qualitative Research; D012648:Self Care; D014195:Travel
keywords: Deep brain stimulation; Parkinson's disease; grounded theory; patient perspective; qualitative method