Co-designing improvements to systems of care and support to tackle inequality of access for people with Atypical Parkinsonian Syndromes: combining a system approach and realist review to inform a discrete choice experiment
Atypical Parkinsonian Syndromes
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 people affected by APS. This approach will enable us to understand what works, for whom and why in six areas of England. Exploration of inequalities of access will provide the knowledge base for a future preparation and evaluation of system improvement guidance.
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.
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.