New research study on carers' experiences of ICBs

Hi everyone,

We are still looking for some more volunteers to take part in our research study. Thank you to eveyone who has taken part so far.

The aim of the study is to explore the carer’s experience of living with someone with Parkinson’s disease (Pd) who exhibits impulsive or compulsive behaviour (ICBs) as a result of their medication. Impulsive-compulsive behaviour is when a person can’t resist the temptation to carry out certain activities or has an overwhelming drive to act in a certain way. Examples of ICBs include (among others): excessive gambling, increased sexual thoughts and feelings, binge eating and compulsive shopping.

Although only a relatively small number of people with Pd experience this behaviour, it can have a significant impact on the person affected and those around them. We would therefore like to get a picture of the impact of ICBs and the support and information provided to carers in relation to understanding and coping with ICBs.

We hope that up to 18 carers in total from across the UK will take part in this study.

Who is involved?
The study is based at and funded by City University London. Parkinson’s UK, the national support and research charity, supports this study. The study has been reviewed and approved by the School of Health Sciences ethics committee at City University London.

What does the taking part involve?
Participation in the study means taking part in a telephone interview with a researcher. The interview will be arranged for a time convenient to you and should last no more that 45 minutes.

The findings from the study will be used to draw conclusions about the carer experience of ICBs and we will recommend ways to improve support.

For further information, my contact details are: Email: [email protected], Tel: 020 7040 5917

Warm regards,

Eamonn

Dr Eamonn McKeown,
School of Health Sciences,
1 Myddelton Street,
City University London
London EC1V 0HB
Dear all,

Thank you to all those who have been in touch with Dr McKeown! He has now interviewed 10 carers about their experiences caring for people with Parkinson’s who exhibit impulsive and compulsive behaviours (ICB) as a result of their medications.

The team are still looking to interview a further 10 carers based across the UK. Please do get in touch with Dr McKeown if you are a carer and happy to share your experiences of caring for an individual exhibiting ICB.

Further information along with Dr McKeown's contact details are included in the post above.

Many thanks,

The research team