Deep brain stimulation (DBS) for Parkinson’s disease successfully alleviates motor symptoms, but unanticipated changes in personality, self, and relationships can occur. Little is known about how these nonmotor outcomes affect patients and families. We prospectively examined the experience and meaning of DBS-related changes in personality and self for patients and caregivers. In-depth, semi-structured interviews were conducted with 22 participants (11 patient–caregiver dyads) before and 9 months after DBS and analyzed using thematic analysis. We identified three themes present prior to DBS that reflected a time of anticipation, while three themes present after DBS reflected a process of adjustment. Participants noted both positive and negative personality changes, with some, but not all, attributing them to the stimulation. The risk of stimulation-related personality change should be weighed against the procedure’s motor benefits and considered in the context of disease- and medication-related personality changes. Clinical implications including perioperative education and follow-up management are discussed.
AgidY.SchupbachM.GargiuloM.MalletL.HouetoJ. L.BeharC.… WelterM. L. (2006). Neurosurgery in Parkinson’s disease: The doctor is happy, the patient less so?Journal of Neural Transmission, 70, 409–414.
2.
AverbeckB. B.O’SullivanS. S.DjamshidianA. (2014). Impulsive and compulsive behaviors in Parkinson’s disease. Annual Review of Clinical Psychology, 10(1), 553–580. https://doi.org/10.1146/annurev-clinpsy-032813-153705
3.
BaertschiM.Flores Alves Dos SantosJ.BurkhardP.WeberK.CanutoA.FavezN. (2019). The burden of normality as a model of psychosocial adjustment after deep brain stimulation for Parkinson’s disease: A systematic investigation. Neuropsychology, 33(2), 178–194. https://doi.org/10.1037/neu0000509
4.
BarclayL. (2000). Autonomy and the social self. In MackenzieC.StoljarN. (Eds.), Relational autonomy: Feminist perspectives on autonomy, agency, and the social self (pp. 52–71). Oxford University Press.
5.
BaylisF. (2013). “I am who I am”: On the perceived threats to personal identity from deep brain stimulation. Neuroethics, 6, 513–526. https://doi.org/10.1007/s12152-011-9137-1
6.
BellE.MaxwellB.McAndrewsM. P.SadikotA.RacineE. (2010). Hope and patients’ expectations in deep brain stimulation: Healthcare providers’ perspectives and approaches. Journal of Clinical Ethics, 21(2), 112–124.
7.
BellE.MaxwellB.McAndrewsM. P.SadikotA.RacineE. (2011). A review of social and relational aspects of deep brain stimulation in Parkinson’s disease informed by healthcare provider experiences. Parkinson’s Disorder, 2011, 871874. https://doi.org/10.4061/2011/871874
8.
BraunV.ClarkeV. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.
9.
CarterJ. H.LyonsK. S.StewartB. J.ArchboldP. G.ScobeeR. (2010). Does age make a difference in caregiver strain? Comparison of young versus older caregivers in early-stage Parkinson’s disease. Movement Disorders, 25(6), 724–730. https://doi.org/10.1002/mds.22888
10.
CrouchM.McKenzieH. (2006). The logic of small samples in interview-based qualitative research. Social Science Information, 45(4), 483–499. https://doi.org/10.1177/0539018406069584
11.
DavisL. L.ChestnuttD.MolloyM.Deshefy-LonghiT.ShimB.GillissC. L. (2014). Adapters, strugglers, and case managers: A typology of spouse caregivers. Qualitative Health Research, 24(11), 1492–1500. https://doi.org/10.1177/1049732314548879
12.
de HaanS.RietveldE.StokhofM.DenysD. (2017). Becoming more oneself? Changes in personality following DBS treatment for psychiatric disorders: Experiences of OCD patients and general considerations. PLOS ONE, 12(4), e0175748. https://doi.org/10.1371/journal.pone.0175748
13.
DekkerJ.de GrootV. (2016). Psychological adjustment to chronic disease and rehabilitation: An exploration. Disability and Rehabilitation, 40(1), 116–120. https://doi.org/10.1080/09638288.2016.1247469
14.
DeuschlG.Schade-BrittingerC.KrackP.VolkmannJ.SchäferH.BötzelK.… VogesJ. (2006). A randomized trial of deep-brain stimulation for Parkinson’s disease. New England Journal of Medicine, 355(9), 896–908. https://doi.org/10.1056/NEJMoa060281
15.
EatoughV.ShawK. (2017). “I’m worried about getting water in the holes in my head”: A phenomenological psychology case study of the experience of undergoing deep brain stimulation surgery for Parkinson’s disease. British Journal of Health Psychology, 22(1), 94–109. https://doi.org/10.1111/bjhp.12219
16.
EisingerR. S.Ramirez-ZamoraA.CarbunaruS.PtakB.Peng-ChenZ.OkunM. S.GunduzA. (2019). Medications, deep brain stimulation, and other factors influencing impulse control disorders in Parkinson’s disease. Frontiers in Neurology, 10, Article 86. https://doi.org/10.3389/fneur.2019.00086
17.
Flores Alves Dos SantosJ.Tezenas du MontcelS.GargiuloM.BeharC.MontelS.HerguetaT.… WelterM. L. (2017). Tackling psychosocial maladjustment in Parkinson’s disease patients following subthalamic deep-brain stimulation: A randomised clinical trial. PLOS ONE, 12(4), e0174512. https://doi.org/10.1371/journal.pone.0174512
18.
GardenhireJ.MulletN.FifeS. (2019). Living with Parkinson’s: The process of finding optimism. Qualitative Health Research, 29(12), 1781–1793. https://doi.org/10.1177/1049732319851485
19.
GilbertF. (2012). The burden of normality: From “chronically ill” to “symptom free.” New ethical challenges for deep brain stimulation postoperative treatment. Journal of Medical Ethics, 38(7), 408–412. https://doi.org/10.1136/medethics-2011-100044
20.
GilbertF.GoddardE.ViañaJ. N. M.CarterA.HorneM. (2017). I miss being me: Phenomenological effects of deep brain stimulation. AJOB Neuroscience, 8(2), 96–109. https://doi.org/10.1080/21507740.2017.1320319
HaahrA.KirkevoldM.HallE. O.OstergaardK. (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. https://doi.org/10.1111/j.1365-2648.2012.06012.x
24.
HaahrA.NorlykA.HallE. O. C.HansenK. E.OstergaardK.KirkevoldM. (2020). Sharing our story individualized and triadic nurse meetings support couples adjustment to living with deep brain stimulation for Parkinson’s disease. International Journal of Qualitative Studies on Health and Well-Being, 15(1), Article 1748361. https://doi.org/10.1080/17482631.2020.1748361
25.
HarizG. M.LimousinP.HambergK. (2016). “DBS means everything–for some time.” Patients’ perspectives on daily life with deep brain stimulation for Parkinson’s disease. Journal of Parkinson’s Disease, 6(2), 335–347. https://doi.org/10.3233/JPD-160799
26.
HodgsonJ. H.GarciaK.TyndallL. (2004). Parkinson’s disease and the couple relationship: A qualitative analysis. Families, Systems, & Health, 22(1), 101–118. https://doi.org/10.1037/1091-7527.22.1.101
27.
KimA.KimY. E.KimH. J.YunJ. Y.YangH. J.LeeW. W.… JeonB. (2018). A 7-year observation of the effect of subthalamic deep brain stimulation on impulse control disorder in patients with Parkinson’s disease. Parkinsonism & Related Disorders, 56, 3–8. https://doi.org/10.1016/j.parkreldis.2018.07.010
28.
KrackP.VolkmannJ.TinkhauserG.DeuschlG. (2019). Deep brain stimulation in movement disorders: From experimental surgery to evidence-based therapy. Movement Disorders, 34(12), 1795–1810. https://doi.org/10.1002/mds.27860
KubuC. S.CooperS. E.MachadoA.FrazierT.VitekJ. L.FordP. J. (2017). Insights gleaned by measuring patients’ stated goals for deep brain stimulation: More than tremor. Neurology, 88(2), 124–130.
31.
KubuC. S.FordP. J.WiltJ. A.MernerA. R.MontpetiteM.ZeiglerJ.RacineE. (2019). Pragmatism and the importance of interdisciplinary teams in investigating personality changes following DBS. Neuroethics, 1–10. https://doi.org/10.1007/s12152-019-09418-3
32.
LawsonR. A.CollertonD.TaylorJ. P.BurnD. J.BrittainK. R. (2018). Coping with cognitive impairment in people with Parkinson’s disease and their carers: A qualitative study. Parkinson’s Disease, 2018, Article 1362053. https://doi.org/10.1155/2018/1362053
33.
LawsonR. A.YarnallA. J.JohnstonF.DuncanG. W.KhooT. K.CollertonD.… BurnD. J. (2017). Cognitive impairment in Parkinson’s disease: Impact on quality of life of carers. International Journal of Geriatric Psychiatry, 32(12), 1362–1370. https://doi.org/10.1002/gps.4623
34.
LewisC. J.MaierF.HorstkotterN.ZywczokA.WittK.EggersC.… TimmermannL. (2015). Subjectively perceived personality and mood changes associated with subthalamic stimulation in patients with Parkinson’s disease. Psychological Medicine, 45(1), 73–85. https://doi.org/10.1017/S0033291714001081
35.
LiddleJ.BeazleyG.GustafssonL.SilburnP. (2019). Mapping the experiences and needs of deep brain stimulation for people with Parkinson’s disease and their family members. Brain Impairment, 20(3), 211–225. https://doi.org/10.1017/BrImp.2019.3
36.
Mastel-SmithB.Stanley-HermannsM. (2012). “It’s like we’re grasping at anything”: Caregivers’ education needs and preferred learning methods. Qualitative Health Research, 22(7), 1007–1015. https://doi.org/10.1177/1049732312443739
37.
MeadG. H. (1934). Mind, self and society. University of Chicago Press.
MellorR. M.SlaymakerE.ClelandJ. (2013). Recognizing and overcoming challenges of couple interview research. Qualitative Health Research, 23(10), 1399–1407. https://doi.org/10.1177/1049732313506963
40.
MosleyP. E.RobinsonK.CoyneT.SilburnP.BreakspearM.CarterA. (2019). “Woe betides anybody who tries to turn me down.” A qualitative analysis of neuropsychiatric symptoms following subthalamic deep brain stimulation for Parkinson’s disease. Neuroethics, 1–17. https://doi.org/10.1007/s12152-019-09410-x
41.
MosleyP. E.SmithD.CoyneT.SilburnP.BreakspearM.PerryA. (2018). The site of stimulation moderates neuropsychiatric symptoms after subthalamic deep brain stimulation for Parkinson’s disease. NeuroImage: Clinical, 18, 996–1006. https://doi.org/10.1016/j.nicl.2018.03.009
42.
Moss-MorrisR. (2013). Adjusting to chronic illness: Time for a unified theory. British Journal of Health Psychology, 18(4), 681–686. https://doi.org/10.1111/bjhp.12072
43.
OverallN. C.FletcherG. J.SimpsonJ. A. (2010). Helping each other grow: Romantic partner support, self-improvement, and relationship quality. Personality & Social Psychology Bulletin, 36(11), 1496–1513. https://doi.org/10.1177/0146167210383045
44.
PhamU.SolbakkA. K.SkogseidI. M.ToftM.PrippA. H.KonglundA. E.… MaltU. F. (2015). Personality changes after deep brain stimulation in Parkinson’s disease. Parkinson’s Disease, 2015, Article 490507. https://doi.org/10.1155/2015/490507
45.
RacineE.Lariviere-BastienD.BellE.MajnemerA.ShevellM. (2013). Respect for autonomy in the healthcare context: Observations from a qualitative study of young adults with cerebral palsy. Child: Care, Health and Development, 39(6), 873–879. https://doi.org/10.1111/cch.12018
46.
RomitoL. M.RajaM.DanieleA.ContarinoM. F.BentivoglioA. R.BarbierA.… AlbaneseA. (2002). Transient mania with hypersexuality after surgery for high frequency stimulation of the subthalamic nucleus in Parkinson’s disease. Movement Disorders, 17(6), 1371–1374. https://doi.org/10.1002/mds.10265
47.
RyanR. M.DeciE. L. (2000). Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. American Psychologist, 55(1), 68–78.
48.
SchacterD. L.ChiaoJ. Y.MitchellJ. P. (2003). The seven sins of memory: Implications for self. Annals of the New York Academy of Sciences, 1001(1), 226–239.
49.
SchüpbachW. M.AgidY. (2008). Psychosocial adjustment after deep brain stimulation in Parkinson’s disease. Nature Clinical Practice: Neurology, 4(2), 58–59. https://doi.org/10.1038/ncpneuro0714
50.
SchüpbachW. M.GargiuloM.WelterM. L.MalletL.BeharC.HouetoJ. L.… AgidY. (2006). Neurosurgery in Parkinson disease: A distressed mind in a repaired body?Neurology, 66(12), 1811–1816. https://doi.org/10.1212/01.wnl.0000234880.51322.16
51.
SinclairN. C.McDermottH. J.FallonJ. B.PereraT.BrownP.BullussK. J.ThevathasanW. (2019). Deep brain stimulation for Parkinson’s disease modulates high-frequency evoked and spontaneous neural activity. Neurobiology of Disease, 130, Article 104522. https://doi.org/10.1016/j.nbd.2019.104522
52.
StoutJ. C.ReadyR. E.GraceJ.MalloyP. F.PaulsenJ. S. (2003). Factor analysis of the frontal systems behavior scale (FrSBe). Assessment, 10(1), 79–85. https://doi.org/10.1177/1073191102250339
53.
ThomsonC.SegraveR. A.CarterA. (2019). Changes in personality associated with deep brain stimulation: A qualitative evaluation of clinician perspectives. Neuro-ethics, 1–16. https://doi.org/10.1007/s12152-019-09419-2
54.
TomsG. R.QuinnC.AndersonD. E.ClareL. (2015). Help yourself: Perspectives on self-management from people with dementia and their caregivers. Qualitative Health Research, 25(1), 87–98. https://doi.org/10.1177/1049732314549604
55.
Vann-WardT.MorseJ. M.CharmazK. (2017). Preserving self: Theorizing the social and psychological processes of living with Parkinson disease. Qualitative Health Research, 27(7), 964–982. https://doi.org/10.1177/1049732317707494
56.
VoonV.KubuC.KrackP.HouetoJ. L.TrosterA. I. (2006). Deep brain stimulation: Neuropsychological and neuropsychiatric issues. Movement Disorders, 21(Suppl. 14), S305–S327. https://doi.org/10.1002/mds.20963
57.
WeintraubD.HoopsS.SheaJ. A.LyonsK. E.PahwaR.Driver-DunckleyE. D.… VoonV. (2009). Validation of the questionnaire for impulsive-compulsive disorders in Parkinson’s disease. Movement Disorders, 24(10), 1461–1467. https://doi.org/10.1002/mds.22571
58.
WilsonS.BladinP.SalingM. (2001). The “burden of normality”: Concepts of adjustment after surgery for seizures. Journal of Neurology, Neurosurgery, and Psychiatry, 70(5), 649–656.
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