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Perceptions of Living With a Device-Based Treatment: An Account of Patients Treated With Deep Brain Stimulation for Parkinson's Disease

Authors

  • Gun-Marie Hariz PhD,

    Corresponding author
    1. Department of Community Medicine and Rehabilitation, Occupational Therapy, Umeå University, Umeå, Sweden
    2. Department of Clinical Neuroscience, Umeå University, Umeå, Sweden
    • Address correspondence to: Gun-Marie Hariz, PhD, Department of Community Medicine and Rehabilitation, Occupational Therapy, Umeå University, 901 87 Umeå, Sweden. Email: gun-marie.hariz@neuro.umu.se

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  • Katarina Hamberg MD, PhD

    1. Department of Public Health and Clinical Medicine, Family Medicine, Umeå University, Umeå, Sweden
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  • For more information on author guidelines, an explanation of our peer review process, and conflict of interest informed consent policies, please go to http://www.wiley.com/bw/submit.asp?ref=1094-7159&site=1
  • Sources of financial support: Swedish Research Council; Parkinson Foundation in Sweden, Parkinsonfonden; Swedish Parkinson Trust; Research Foundation for Clinical Neuroscience, University Hospital of Northern Sweden.
  • Conflict of interest: Gun-Marie Hariz and Katarina Hamberg reported no conflicts of interest.

Abstract

Objectives

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.

Materials and 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.

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