Qualitative Lead(s)
Professor Vanessa Lawrence
Project Lead & Team
Programme Chief Investigator: Robert Howard
Multidisciplinary programme involving neurologists, psychiatrists, ophthalmologists, psychologists, epidemiologists, and patient and public involvement representatives.
Project Dates
2013–2018
Funding Source(s)
NIHR Programme Grants for Applied Research
Qualitative Design used
Field of Research
Dementia; Parkinson’s disease; neurodegenerative disorders; visual hallucinations; clinical management and service design, evidence-informed Guideline Development
Geographic/Contextual Setting
UK neurology clinics, ophthalmology services, memory clinics, and community mental health services.
Study of Visual Hallucinations in Parkinson’s Disease, Eye Disease and Dementia
SHAPED was a multi-centre NIHR Programme Grant investigating the prevalence, impact, mechanisms, and clinical management of visual hallucinations across neurological and ophthalmological conditions, including dementia, Parkinson’s disease, and eye disease. Qualitative research formed a key component of the programme, exploring the lived experiences, needs, and management preferences of individuals experiencing visual hallucinations and their caregivers. Findings informed the development of clinical management recommendations and contributed to consensus guideline development for visual hallucinations across diagnostic groups.
Qualitative Approach and Methods
Aim of the qualitative component
To understand the lived experience, impacts, coping strategies, and support needs of individuals experiencing visual hallucinations and their caregivers, and to generate evidence informing clinical management strategies and guideline development.
Qualitative methodology
A multi-phase qualitative research programme combining experience-based qualitative studies, stakeholder needs assessment, and integration of qualitative findings into programme-level evidence synthesis and clinical recommendation development.
Which qualitative methods were used?
- Individual qualitative interviews with people experiencing visual hallucinations and their caregivers across diagnostic groups.
- Stakeholder consultation workshops informing management recommendations.
- Integration of qualitative findings with epidemiological and clinical programme components to inform guidance.
Sampling & recruitment
Participants were purposively recruited from neurology, ophthalmology, and memory services to capture variation in diagnosis, hallucination characteristics, disease stage, and caregiving context. Informal caregivers were recruited alongside participants where possible.
Data analysis: how the team made sense of the data
Interview data were analysed using inductive thematic analysis, with cross-condition comparisons identifying shared and condition-specific mechanisms influencing distress, disclosure, coping, and clinical support needs.
Findings, Learning & Impact
Summary of main findings
Qualitative findings demonstrated that stigma, fear of clinical consequences, and uncertainty about symptom meaning often delayed disclosure of hallucinations to clinicians. Patient distress was strongly influenced by insight, caregiver responses, and disease progression, highlighting the need for tailored clinical communication and caregiver support strategies across disease stages.
Why were qualitative methods used in this project, and what did they enable?
Qualitative research enabled the programme to:
- Capture patient and caregiver perspectives not represented in epidemiological datasets.
- Identify barriers to symptom disclosure and care access.
- Inform clinically relevant management recommendations grounded in lived experience.
- Support development of transdiagnostic clinical guidance.
Lessons learnt / reflections?
- Hallucinations are frequently under-reported due to stigma and fear of institutionalisation or medication changes.
- Caregiver and clinician responses strongly shape patient coping and distress.
- Embedding qualitative research within programme grants strengthens the clinical relevance and implementation potential of findings.
Impact & influence
SHAPED generated one of the first transdiagnostic evidence bases for understanding visual hallucinations across neurological and ophthalmological conditions. Qualitative findings informed consensus clinical guidance and contributed to improved awareness of patient and caregiver needs, shaping subsequent clinical research, management frameworks, and service discussions relating to hallucinations in dementia and Parkinson’s disease.
Links, Outputs & Resources
Links to publications
- Renouf, S., Ffytche, D., Pinto, R., Murray, J., & Lawrence, V. (2018). Visual hallucinations in dementia and Parkinson’s disease: A qualitative exploration of patient and caregiver experiences. International Journal of Geriatric Psychiatry, 33(10), 1327–1334. Available here.
- O’Brien, J., Taylor, J. P., Ballard, C., Barker, R. A., Bradley, C., Burns, A., Collerton, D., Dave, S., Dudley, R., Francis, P., Gibbons, A., Harris, K., Lawrence, V., Leroi, I., McKeith, I., Michaelides, M., Naik, C., O’Callaghan, C., Olsen, K., … Ffytche, D. (2020). Visual hallucinations in neurological and ophthalmological disease: Pathophysiology and management. Journal of Neurology, Neurosurgery & Psychiatry, 91(5), 512–519. Available here.