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

Published online by Cambridge University Press:  04 March 2019

Jacki Liddle Open the ORCID record for Jacki Liddle [Opens in a new window] ,
Gregory Beazley ,
Louise Gustafsson  and
Peter Silburn
Jacki Liddle*
Affiliation:
Asia Pacific Centre for Neuromodulation, Queensland Brain Institute, The University of Queensland, Brisbane, QLD, Australia School of Information Technology and Electrical Engineering, The University of Queensland, Brisbane, QLD, Australia
Gregory Beazley
Affiliation:
School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, QLD, Australia
Louise Gustafsson
Affiliation:
School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, QLD, Australia
Peter Silburn
Affiliation:
Asia Pacific Centre for Neuromodulation, Queensland Brain Institute, The University of Queensland, Brisbane, QLD, Australia
*
*Corresponding author. Email: [email protected]
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Abstract

Background

Deep 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.

Method

A 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.

Findings

Four 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.

Keywords

NeuromodulationtransitionParkinson’s diseasequalitativesupport
Type
Articles
Information
Brain Impairment , Volume 20 , Issue 3 , December 2019 , pp. 211 - 225
Copyright
© Australasian Society for the Study of Brain Impairment 2019 

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References

Agid, Y., Schüpbach, M., Gargiulo, M., Mallet, L., Houeto, J. L., Behar, C., … Welter, M. L. (2006). Neurosurgery in Parkinson’s disease: The doctor is happy, the patient less so? In: Riederer, P., Reichmann, H., Youdim, M. B. H. & Gerlach, M. (Eds.), Parkinson’s Disease and Related Disorders (pp. 409–414). Vienna: Springer.CrossRefGoogle Scholar
Aldridge, D., Theodoros, D., Angwin, A., & Vogel, A. P. (2016). Speech outcomes in Parkinson’s disease after subthalamic nucleus deep brain stimulation: A systematic review. Parkinsonism & Related Disorders, 33(Supplement C), 3–11. doi: 10.1016/j.parkreldis.2016.09.022 CrossRefGoogle ScholarPubMed
Bang Henriksen, M., Johnsen, E. L., Sunde, N., Vase, A., Gjelstrup, M. C., & Østergaard, K. (2016). Surviving 10 years with deep brain stimulation for Parkinson’s disease – a follow-up of 79 patients. European Journal of Neurology, 23(1), 53–61. doi: 10.1111/ene.12614 CrossRefGoogle ScholarPubMed
Bell, E., Maxwell, B., McAndrews, M. P., Sadikot, A., & Racine, E. (2010). Hope and patients’ expectations in deep brain stimulation: Healthcare providers’ perspectives and approaches. The Journal of Clinical Ethics, 21(2), 112–124.Google ScholarPubMed
Bloem, B. R., & Munneke, M. (2014). Revolutionising management of chronic disease: The ParkinsonNet approach. BMJ, 348, g1838. doi: 10.1136/bmj.g1838 CrossRefGoogle ScholarPubMed
Brandt, J., Rogerson, M., Al-Joudi, H., Reckess, G., Shpritz, B., Umeh, C. C., … Mari, Z. (2015). Betting on DBS: Effects of subthalamic nucleus deep brain stimulation on risk taking and decision making in patients with Parkinson’s disease. Neuropsychology, 29(4), 622–631.CrossRefGoogle ScholarPubMed
Couto, M. I., Monteiro, A., Oliveira, A., Lunet, N., & Massano, J. (2014). Depression and anxiety following deep brain stimulation in Parkinson’s disease: Systematic review and meta-analysis. Acta Médica Portuguesa, 27(3), 372–382. doi: 10.20344/amp.4928 CrossRefGoogle ScholarPubMed
Dedoose. (2016). Subscription-based web application for managing, analyzing and presenting qualitative research data. (Version 7.05.04). Los Angeles, CA: SocioCultural Research Consultants, LLC.Google Scholar
Dorsey, E. R., Venkataraman, V., Grana, M. J., Bull, M. T., George, B. P., Boyd, C. M., … Biglan, K. M. (2013). Randomized controlled clinical trial of ‘Virtual House Calls’ for Parkinson disease. JAMA Neurology, 70(5), 565–570. doi: 10.1001/jamaneurol.2013.123 CrossRefGoogle Scholar
Fasano, A., Romito, L. M., Daniele, A., Piano, C., Zinno, M., Bentivoglio, A. R., & Albanese, A. (2010). Motor and cognitive outcome in patients with Parkinson’s disease 8 years after subthalamic implants. Brain , 133(9), 2664–2676. doi: 10.1093/brain/awq221 CrossRefGoogle ScholarPubMed
Gardner, J. (2017). Patient-centred medicine and the broad clinical gaze: Measuring outcomes in paediatric deep brain stimulation. BioSocieties , 12(2), 239–256. doi: 10.1057/biosoc.2016.6 CrossRefGoogle Scholar
Haahr, A., Kirkevold, M., Hall, E. O. C., & Østergaard, K. (2010). From miracle to reconciliation: A hermeneutic phenomenological study exploring the experience of living with Parkinson’s disease following Deep Brain Stimulation. International Journal of Nursing Studies, 47(10), 1228–1236. doi: 10.1016/j.ijnurstu.2010.03.006 CrossRefGoogle ScholarPubMed
Haahr, A., Kirkevold, M., Hall, E. O., & Østergaard, K. (2011). Living with advanced Parkinson’s disease: A constant struggle with unpredictability. Journal of advanced nursing, 67(2), 408–417.CrossRefGoogle ScholarPubMed
Haahr, A., Kirkevold, M., Hall, E. O. C., & Østergaard, K. (2013). ‘Being in it together’: Living with a partner receiving deep brain stimulation for advanced Parkinson’s disease – a hermeneutic phenomenological study. Journal of Advanced Nursing, 69(2), 338–347. doi: 10.1111/j.1365-2648.2012.06012.x CrossRefGoogle ScholarPubMed
Hamberg, K., & Hariz, G. M. (2014). The decision-making process leading to deep brain stimulation in men and women with Parkinson’s disease – An interview study. BMC Neurology, 14(1), 1471–1481.CrossRefGoogle ScholarPubMed
Hariz, G. M., & Hamberg, K. (2014). Perceptions of living with a deviceâ€�based treatment: An account of patients treated with deep brain stimulation for Parkinson’s disease. Neuromodulation: Technology at the Neural Interface, 17(3), 272–278.CrossRefGoogle ScholarPubMed
Langdridge, D. (2007). Phenomenological psychology: Theory, research and method. New York, NY: Pearson Education.Google Scholar
Lewis, C. J., Maier, F., Horstkötter, N., Zywczok, A., Witt, K., Eggers, C., … Timmermann, L. (2015). Subjectively perceived personality and mood changes associated with subthalamic stimulation in patients with Parkinson’s disease. Psychological Medicine, 45(1), 73–85. doi: 10.1017/S0033291714001081 CrossRefGoogle ScholarPubMed
Liddle, J., Allen, S., & Chenery, H. J. (2014). Perceived clinical and adjustment needs related to deep brain stimulation for movement disorders: A metasynthesis. Movement Disorders, 29, 444.Google Scholar
Liddle, J., Carlson, G., & McKenna, K. (2004). Using a matrix in life transition research. Qualitative Health Research, 14(10), 1396–1417. doi: 10.1177/1049732304268793 CrossRefGoogle ScholarPubMed
Martinez-Fernandez, R., Pelissier, P., Quesada, J.-L., Klinger, H., Lhommée, E., Schmitt, E., … Krack, P. (2016). Postoperative apathy can neutralise benefits in quality of life after subthalamic stimulation for Parkinson’s disease. J Neurol Neurosurg Psychiatry, 87(3), 311–318. doi: 10.1136/jnnp-2014-310189 CrossRefGoogle ScholarPubMed
Mathers, J., Rick, C., Jenkinson, C., Garside, R., Pall, H., Mitchell, R., … Jones, L. L. (2016). Patients’ experiences of deep brain stimulation for Parkinson’s disease: A qualitative systematic review and synthesis. BMJ Open, 6(6), e011525. doi: 10.1136/bmjopen-2016-011525 CrossRefGoogle ScholarPubMed
Moro, E. (2014). Parkinson disease: Let’s listen to patients with PD after deep brain stimulation. Nature Reviews Neurology, 10(10), 550. doi: 10.1038/nrneurol.2014.167 CrossRefGoogle ScholarPubMed
Neergaard, M. A., Olesen, F., Andersen, R. S., & Sondergaard, J. (2009). Qualitative description – The poor cousin of health research? BMC Medical Research Methodology, 9, 52. doi: 10.1186/1471-2288-9-52 CrossRefGoogle ScholarPubMed
Patton, M. Q. (2015). Qualitative research and evaluation methods. (4th ed.). Thousand Oaks, CA: Sage Publications.Google Scholar
Poortvliet, P. C., Silburn, P. A., Coyne, T. J., & Chenery, H. J. (2015). Deep brain stimulation for Parkinson disease in Australia: Current scientific and clinical status. Internal Medicine Journal, 45(2), 134–139. doi: 10.1111/imj.12656 CrossRefGoogle ScholarPubMed
Roper, J. A., Kang, N., Ben, J., Cauraugh, J. H., Okun, M. S., & Hass, C. J. (2016). Deep brain stimulation improves gait velocity in Parkinson’s disease: A systematic review and meta-analysis. Journal of Neurology, 263(6), 1195–1203. doi: 10.1007/s00415-016-8129-9 CrossRefGoogle ScholarPubMed
Schiefer, T. K., Matsumoto, J. Y., & Lee, K. H. (2011). Moving forward: Advances in the treatment of movement disorders with deep brain stimulation. Frontiers in Integrative Neuroscience, 5, 69.CrossRefGoogle ScholarPubMed
Schipper, K., Dauwerse, L., Hendrikx, A., Leedekerken, J. W., & Abma, T. A. (2014). Living with Parkinson’s disease: Priorities for resesarch suggested by patients. Parkinsonism & Related Disorders, 20(8), 862–866.CrossRefGoogle Scholar
Schuepbach, M., Gargiulo, M., Welter, M. L., Mallet, L., Behar, C., Houeto, J. L., … Agid, Y. (2006). Neurosurgery in Parkinson disease. A distressed mind in a repaired body? Neurology. Retrieved from http://n.neurology.org/content/neurosurgery-parkinson-disease-distressed-mind-repaired-body CrossRefGoogle Scholar
Schüpbach, W. M. M., Rau, J., Houeto, J.-L., Krack, P., Schnitzler, A., Schade-Brittinger, C., … Deuschl, G. (2014). Myths and facts about the EARLYSTIM study. Movement Disorders, 29(14), 1742–1750. doi: 10.1002/mds.26080 CrossRefGoogle ScholarPubMed
Shulman, J. M., Jager, P. L. D., & Feany, M. B. (2011). Parkinson’s disease: Genetics and pathogenesis. Annual Review of Pathology: Mechanisms of Disease, 6(1), 193–222. doi: 10.1146/annurev-pathol-011110-130242 CrossRefGoogle ScholarPubMed
Stanley, M. (2015). Qualitative descriptive: A very good place to start. In Qualitative research methodologies for occupational science and therapy. (pp. 21–36). Abingdon, Oxon: Routledge.Google Scholar
Theed, R., Eccles, F., & Simpson, J. (2017). Experiences of caring for a family member with Parkinson’s disease: A meta-synthesis. Aging & Mental Health, 21(10), 1007–1016.CrossRefGoogle ScholarPubMed
Troche, M. S., Brandimore, A. E., Foote, K. D., & Okun, M. S. (2013). Swallowing and deep brain stimulation in Parkinson’s disease: A systematic review. Parkinsonism & Related Disorders, 19(9), 783–788. doi: 10.1016/j.parkreldis.2013.05.001 CrossRefGoogle ScholarPubMed
Visser, L. M., Bleijenbergh, I. L., Benschop, Y. W. M., Riel, A. C. R. V., & Bloem, B. R. (2016). Do online communities change power processes in healthcare? Using case studies to examine the use of online health communities by patients with Parkinson’s disease. BMJ Open, 6(11), e012110. doi: 10.1136/bmjopen-2016-012110 CrossRefGoogle ScholarPubMed
Young, R., Jones, D., & Baker, K. (2010). What makes an ‘ideal’ physiotherapy service for people with Parkinson’s disease? Physiotherapy Research International, 15(4), 244–244. doi: 10.1002/pri.494 CrossRefGoogle Scholar
Yu, H., & Neimat, J. S. (2008). The treatment of movement disorders by deep brain stimulation. Neurotherapeutics , 5(1), 26–36. doi: 10.1016/j.nurt.2007.10.072 CrossRefGoogle ScholarPubMed
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