Table 1 Overview over the included studies, reporting involved patient groups, sample size, method, country, investigated neurotechnology and whether invasive or non-invasive technology was investigated
From: Qualitative studies involving users of clinical neurotechnology: a scoping review
Year | Authors | Title | Patient group | n | Method | Country | Neurotechnology | Quality measure | I/NI | |||
|---|---|---|---|---|---|---|---|---|---|---|---|---|
2012 | Blain-Moraes et al. | Barriers to and mediators of brain-computer interface user acceptance: Focus group findings | ALS | 8 | Focus group | US | EEG-based BCI | – | NI | |||
2012 | Mulvenna et al. | Realistic expectations with brain computer interfaces | Acquired brain injury | 11 | Interviews | UK | EEG-based BCI | NI | ||||
2013 | Maier et al. | Patients’ expectations of deep brain stimulation, and subjective perceived outcome related to clinical measures in Parkinson’s disease: a mixed-method approach | PD | 30 | Semi-structured interview | D | DBS | – | I | |||
2014 | Grubler et al. | Psychosocial and Ethical Aspects in Non-Invasive EEG-Based BCI Research-A Survey Among BCI Users and BCI Professionals | Stroke | 19 | Semi-structured interview | D/CH | EEG-based BCI | two coding done & checked by two researchers | NI | |||
2014 | Hariz, G., & Hamberg, K. | Perceptions of living with a device-based treatment: An account of patients treated with deep brain stimulation for parkinson’s disease | PD | 39 | Semi-structured interview | SE | DBS | No COREQ but rigorous description of grounded theory approach | I | |||
2015 | de Haan et al. | Effects of deep brain stimulation on the lived experience of obsessive-compulsive disorder patients: In-depth interviews with 18 patients | OCD | 18 | Semi-structured interview | NL | DBS | COREQ | I | |||
2015 | Lewis et al. | Subjectively perceived personality and mood changes associated with subthalamic stimulation in patients with Parkinson’s disease | PD | 27 | Semi-structured interview | D | DBS | – | I | |||
2016 | Hariz, G.M., Limousin, P, & Hamberg, K. | “DBS means everything-For some time”. Patients’ perspectives on daily life with deep brain stimulation for Parkinson’s disease | PD | 42 | Semi-structured interview | SE | DBS | No COREQ but rigorous description of grounded theory approach | I | |||
2016 | Klein et al. | Brain-computer interface-based control of closed-loop brain stimulation: attitudes and ethical considerations | OCD / Depression | 15 | Focus group (8), semi-structured interview (7) | US | DBS | – | I | |||
2016 | Maier et al. | Subjective perceived outcome of subthalamic deep brain stimulation in Parkinson’s disease one year after surgery | PD | 28 | Semi-structured interview | D | DBS | – | I | |||
2017 | de Haan et al. | Becoming more oneself? Changes in personality following DBS treatment for psychiatric disorders: Experiences of OCD patients and general considerations | OCD | 18 | Semi-structured interview | NL | DBS | – | I | |||
2017 | Kryger et al. | Flight simulation using a Brain-Computer Interface: A pilot, pilot study | Spinocerebellar degeneration | 1 | Participant’s description of experience during experiment | US | invasive BCI (intracortical microelectrode arrays) | – | I | |||
2017 | LaHue et al. | Parkinson’s disease patient preference and experience with various methods of DBS lead placement | PD | 89 | Structured interview | US | DBS | – | I | |||
2017 | Gilbert et al. | I Miss Being Me: Phenomenological Effects of Deep Brain Stimulation | PD | 17 | Semi-structured interview | AUS | DBS | – | I | |||
2018 | Bosanac et al. | Identity challenges and ‘burden of normality’ after DBS for severe OCD: a narrative case study | OCD | 1 | Narrative analysis | AUS | DBS | COREQ | I | |||
2018 | Gilbert, F., & Viaña, J. N. | A Personal Narrative on Living and Dealing with Psychiatric Symptoms after DBS Surgery | PD | 1 | Personal narrative | AUS | DBS | – | I | |||
2018 | Kubu et al. | Patients’ shifting goals for deep brain stimulation and informed consent | PD | 52 | Semi-structured interview | US | DBS | No COREQ but rigorous description of grounded theory approach | I | |||
2018 | Martin et al. | A qualitative study adopting a user-centered approach to design and validate a brain computer interface for cognitive rehabilitation for people with brain injury | Traumatic brain injury | 5 | Oral feedback at the end of experiment | UK | EEG-based BCI | NI | ||||
2019 | Al-Taleb et al. | Home used, patient self-managed, brain-computer interface for the management of central neuropathic pain post spinal cord injury: Usability study | Central neuropathic pain in people with spinal cord injury. | 15 | Semi-structured interview | UK | EEG-based neurofeedback | – | NI | |||
2019 | Gilbert et al. | Embodiment and Estrangement: Results from a First-in-Human “Intelligent BCI” Trial | Epilepsy | 6 | Semi-structured interview | AUS | Intelligent implantable BCI (predictive & advisory function); intracranial electrodes on cortical surface | – | I | |||
2019 | Liddle et al. | Impact of deep brain stimulation on people with Parkinson’s disease: A mixed methods feasibility study exploring lifespace and community outcomes | PD | 8 | Semi-structured interview | AUS | DBS | No COREQ but mixed methods quality checks such as triangulation or following themes from one data type to the other | I | |||
2019 | Liddle et al. | Mapping the experiences and needs of deep brain stimulation for people with Parkinson’s disease and their family members | PD | 14 | Semi-structured interview | AUS | DBS | No Coreq but lengthy description of coding process | I | |||
2019 | Ryan et al. | An Exploration of the Experiences and Educational Needs of Patients With Failed Back Surgery Syndrome Receiving Spinal Cord Stimulation | Failed back surgery syndrom | 12 | Semi-structured interview | UK | Spinal Cord Stimulation | – | I | |||
2019 | Shahmoon, S.; Smith, J. A.; Jahanshahi, M. | The Lived Experiences of Deep Brain Stimulation in Parkinson’s Disease: An Interpretative Phenomenological Analysis | PD | 10 | Semi-structured interview | UK | DBS | I | ||||
2020 | Cabrera, L. Y.; Kelly-Blake, K.; Sidiropoulos, C. | Perspectives on Deep Brain Stimulation and Its Earlier Use for Parkinson’s Disease: A Qualitative Study of US Patients | PD | 20 | (semi-)structured interview | US | DBS | – | I | |||
2020 | Kögel, J.; Jox, R. J.; Friedrich, O. | What is it like to use a BCI? - insights from an interview study with brain-computer interface users | different muscular conditions | 9 | Semi-structured interview | D | invasive & non-invasive (EEG-based) BCIs (active or reactive; no passive such as DBS) | Comprehensive description of grounded theory approach | NI & I | |||
2020 | Thomson et al. | “He’s back so I’m not alone”: The impact of deep brain stimulation on personality, self, and relationships in Parkinson’s disease | PD | 11 | Semi-structured interview | AUS | DBS | crosscoding; no COREQ | I | |||
2021 | Chacón Gámez, Y. M.; Brugger, F.; Biller-Andorno, N. | Parkinson’s Disease and Deep Brain Stimulation Have an Impact on My Life: A Multimodal Study on the Experiences of Patients and Family Caregivers | PD | 44 | Semi-structured interview | CH | DBS | report on researchers’ reflexivity; double-coding; coding tree checked with further team members | I | |||
2021 | Merner et al. | Changes in Patients’ Desired Control of Their Deep Brain Stimulation and Subjective Global Control Over the Course of Deep Brain Stimulation | PD | 52 | Semi-structured interview | US | DBS | – | I | |||
2021 | Mosley et al. | ‘Woe Betides Anybody Who Tries to Turn me Down.’ A Qualitative Analysis of Neuropsychiatric Symptoms Following Subthalamic Deep Brain Stimulation for Parkinson’s Disease | PD | 10 | Semi-structured interview | AUS | DBS | COREQ | I | |||
2021 | Bluhm et al. | They Affect the Person, but for Better or Worse? Perceptions of Electroceutical Interventions for Depression Among Psychiatrists, Patients, and the Public | Depression | 48 | Semi-structured interview | US | ECT; TMS; DBS | – | I & NI | |||
2021 | Sankary et al. | Exit from Brain Device Research: A Modified Grounded Theory Study of Researcher Obligations and Participant Experiences | Stroke, Depression, Epilepsy | 16 | Semi-structured interview | US | Investigational brain implants (DBS, responsive neurostimulation) | Discussion of data saturation (Corbin & Strauss) | I | |||
2021 | Thomson et al. | “Nothing to Lose, Absolutely Everything to Gain”: Patient and Caregiver Expectations and Subjective Outcomes of Deep Brain Stimulation for Treatment-Resistant Depression | Depression | 6 | Semi-structured interview | AUS | DBS | COREQ | I | |||
2021 | Zulauf-Czaja et al. | On the way home: a BCI-FES hand therapy self-managed by sub-acute SCI participants and their caregivers: a usability study | Spinal cord injury (tetraplegic) | 8 | Focus group & interview | UK | EEG & functional electrical stimulation | – | NI | |||
2021 | Wexler et al. | Ethical Issues in Intraoperative Neuroscience Research: Assessing Subjects’ Recall of Informed Consent and Motivations for Participation | PD | 22 | Semi-structured interview | US | DBS | - | I | |||
2021 | Goering, S., Wexler, A. and Klein, E. | Trading Vulnerabilities: Living with Parkinson’s Disease before and after Deep Brain Stimulation | PD | 22 | Semi-structured interview | US | DBS | - | I | |||