Atypical Parkinsonian Syndromes Nervous System Diseases
Conditions
Interventions
The project will be conducted over 24 months. It combines realist methodology with an engineering-informed systems approach to understand the factors affecting the provision of care and support to peo
Sponsors
University Hospital Southampton NHS Foundation Trust
Eligibility
Sex/Gender
All
Age
18 Years to 100 Years
Inclusion criteria
Inclusion criteria: 1. People with mental capacity and ability to communicate. 2. People providing consent to participate of all genders, age, ethnicity, socio economic background, location. Patients’ cohort: People with mental capacity (according to carer/family) and ability to communicate, affected by APS, selected at different stages: 1. People at a moderate stage of the APS disease, 2-3 years from diagnosis, to capture information regarding diagnosis and initial care and referrals, and to obtain their views while still able to communicate. 2. People at later stage of the APS disease, >3 years. Carers’ cohort: 1. Defined as someone who cares for, supports or provides help to someone affected by APS, either family member, relative, paid carer, close friend or neighbour on a regular basis for at least 2 years. 2. Carers of deceased people (<1 year to avoid recall bias) in order to capture information about the majority of the pathway through the care system. 3. Carers able to represent their relative/employer and consenting to also share their own experience of caring for people with APS. Health care, social care and charity staff cohort: Staff with or without experience of liaising with people affected by APS, but aware of barriers and facilitators of access to services for people with APS.
Exclusion criteria
Exclusion criteria: 1. People with multi-morbidities that affect function (mild cognitive impairment, dementia, speech and language impairment, frailty), other conditions that would prevent participations to the study. 2. People who refuse consent after initial meeting or during the study.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Diversity of experience measured using interviews and thematic analysis at baseline | — |
Secondary
| Measure | Time frame |
|---|---|
| Health and social care service utilization, informal care, accommodation and living situation, employment and productivity, education measured using the Client Service Receipt Inventory domains at baseline | — |
Countries
England, United Kingdom
Contacts
Public ContactAnnalisa Casarin
Outcome results
None listed