Older adults’ experience of aging with FND

  • Research type

    Research Study

  • Full title

    Phenomenological study to explore older adults’ experience of aging with Functional Neurological Disorder

  • IRAS ID

    325702

  • Contact name

    Olga Skonieczna-Rzepka

  • Contact email

    o.skonieczna-rzepka@surrey.ac.uk

  • Sponsor organisation

    University of Surrey Research Integrity and Governance Office (RIGO)

  • Duration of Study in the UK

    0 years, 6 months, 1 days

  • Research summary

    Research Summary:
    This project is being run as part of the Clinical Psychology doctoral training programme with the University of Surrey and Surrey and Borders Partnership NHS trust. This study aims to explore the subjective experiences of aging in older adults diagnosed with Functional Neurological Disorder (FND), a complex neurological condition that significantly impacts physical function, mental health, and independence, thus challenging traditional definitions of healthy aging. Despite a rising prevalence of FND in geriatric populations, the existing literature provides limited insight into the lived experience of aging with FND from the perspective of older adults themselves. This study will adopt an Interpretative Phenomenological Analysis (IPA) methodology which would involve in depth interviews with participants meeting the inclusion criteria. Participants will be eligible to take part if they are 60 years or older, have the diagnosis of FND and have the capacity to consent to take part. The study aims to identify factors that influence healthy aging in this demographic and provide recommendations for healthcare professionals and caregivers supporting older adults with FND. The expected outcomes include rich descriptions of the aging experience among older adults with FND, thereby contributing to a more nuanced understanding of healthy aging that incorporates their unique experiences.

    Lay summary of study results:
    Functional Neurological Disorder (FND) is a condition characterised by neurological symptoms that cannot be attributed to any identifiable structural/ organic brain damage. Up to one in five patients over the age of 60 may begin to experience motor and/or cognitive impairments associated with FND. Despite this growing evidence, much of the existing research on FND continues to focus on younger populations, leaving the experiences and challenges faced by older adults underexplored.
    We used Interpretative Phenomenological Analysis (IPA) to explore the lived experiences of ageing with FND from the perspective of 7 older adults.
    We generated three overarching group experiential statements that encapsulate the shared struggles and individualised nuances of living with FND. These were:
    1.) Identity in transition: The journey from mourning the loss of the "old self" to grappling with the emerging "new self".
    2.) The emotional weight of living with, and ageing with, FND: The struggles with issues such as the unpredictability of symptoms, feelings of invalidation, and the broader psychological burden of adaptation coupled with the resilience shown.
    3.) Navigating barriers and building support: Barriers in managing FND, including diagnostic uncertainty, systemic inadequacies, and interpersonal challenges plus the ways people built support networks.
    Findings highlight the complex and multifaceted experiences of living and ageing with FND, highlighting both shared struggles and individualised journeys. These insights contribute to a deeper understanding of the lived realities of people who are ageing with FND, highlighting the need for more inclusive and empathetic approaches to care and support.

  • REC name

    Yorkshire & The Humber - South Yorkshire Research Ethics Committee

  • REC reference

    23/YH/0188

  • Date of REC Opinion

    19 Oct 2023

  • REC opinion

    Further Information Favourable Opinion