An investigation into the subjective wellbeing of the chronically ill
Research type
Research Study
Full title
Investigation of Happiness and Subjective Well-being (HSWB) in Parkinson’s disease and Chronic Neurological Disease (CND): Cross-sectional, longitudinal and observational studies
IRAS ID
233401
Contact name
Marjan Jahanshahi
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
Z6364106/2018/03/99, Data protection
Duration of Study in the UK
5 years, 9 months, 7 days
Research summary
Chronic neurological disorders (CND) such as Parkinson's disease (PD), dystonia and multiple sclerosis, have a host of motor and non-motor (cognitive and psychiatric) symptoms that can affect happiness and subjective wellbeing (HSWB). Unlike mainstream psychology, which looks at disorder and dysfunction, positive psychology (PoP) focuses on wellbeing and positive emotion and how these are achieved. HSWB is not merely defined in terms of the absence of 'misery', but relates to positive emotion, engagement and meaning in life, which depends on personal, psychological and social factors. HSWB are rarely used as outcome measures in treatment trials for CND and are often overlooked in the management of CND. The aim of this project is to bridge this gap first by assessing HSWB in CND at a specific point in time (cross-sectionally) and also over a period of time (longitudinally) and second, to develop a 'protocol for enhancement of HSWB and evaluate.
Another element of this research will also focus on PD patients who have suddenly returned to better health through deep brain stimulation surgery (DBS). There is very little data available about the psychosocial effects of DBS surgery on the operated people with PD, carers and their children living at home. The shift produced by DBS surgery from 'chronically ill' to 'well' can occur virtually overnight and can mark a dramatic change in a person's life. Patients who have spent years incorporating PD into their self-image, identifying themselves as "an ill person"can struggle to adapt to the rapid change to improved motor function and health. This rapid change to sudden health can affect the way the patient and their family act and interact. This project aims to identify the psychosocial effects of DBS surgery on patients/carers/children and create a program aimed at facilitating "What to expect with DBS surgery," where matters regarding expectations, change of functioning, priorities and roles and importance of communication will be discussed.REC name
London - Westminster Research Ethics Committee
REC reference
18/LO/0726
Date of REC Opinion
3 May 2018
REC opinion
Unfavourable Opinion