What are the psychological needs of care-partners of people with PSP?
Research type
Research Study
Full title
Understanding the psychological needs of care-partners of people with Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD).
IRAS ID
361105
Contact name
Ruth Lewis-Morton
Contact email
Sponsor organisation
Cardiff and Vale University Health Board
Duration of Study in the UK
0 years, 6 months, 31 days
Research summary
Offering care to a family member with PSP (Progressive Supernuclear Palsy) and CBD (Corticobasal Degeneration) can be emotionally and physically challenging and can lead to people feeling under strain and isolated. Despite this hugely important, yet highly complex role, there has been limited research on understanding the needs of this group. We will refer to carers/family members as care-partners as this has been selected as the preferred name by people within this cohort.
We know that care-partners of people with PSP/CBD play a hugely significant role in offering emotional, psychological and physical support to their loved ones. It is likely that without the care-partners’ support, the quality of life of people with PSP or CBD would be directly impacted. Given that people with PSP and CBD rely so heavily on their care-partners to support them, prioritising the psychological needs of care-partners is vitally important in order to improve the quality of life for people living with the condition, as well as for the care-partners themselves.
We aim to learn more about the psychological needs of care-partners through semi-structured interviews, which involve asking questions about how the condition affects the care-partners. We hope that between 12-15 care-partners will participate in the study and will be invited to take part via the Cardiff and Vale Parkinson’s service or via the charity PSPA. Once the interviews have been completed and the data has been analysed, we aim to share information about the psychological needs of care-partners and recommendations about what care-partners of people with the PSP or CBD condition need.
This project has been co-designed and co-produced alongside a care-partner of a person with PSP to ensure that people’s lived experience of this condition has supported with the project design.
REC name
Wales REC 1
REC reference
25/WA/0285
Date of REC Opinion
12 Nov 2025
REC opinion
Further Information Favourable Opinion