Care planning for long-term conditions in dementia
Research type
Research Study
Full title
Qualitative study exploring how care is planned and delivered to people living with dementia and a long-term condition
IRAS ID
274850
Contact name
Claudia Cooper
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
Z6364106/2019/12/02 , UCL Data Protection Office
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
This study is part of Jessica Rees’s PhD which seeks to understand how people with dementia are supported to look after their health when they also have a long-term health condition such as diabetes, asthma or arthritis.
In this study, we plan to observe health appointments that people living with dementia attend, and meet them and their families at home. We would like to observe and talk to people living with dementia and those who support them about how they manage their physical health conditions.
We will recruit GP practices and memory services through NHS trusts we have links with. Researchers will only have contact details for professionals, people with dementia and family carers who agree to be contacted. We will use participant observation to understand what is happening in practice, and qualitative interviews to understand participants experiences.
Participant observation: Over a period of 3-6 months, a researcher will observe up to eight people with dementia managing their physical health. Where available, we will observe support from either family/friend carers, healthcare professionals or home care staff. In healthcare settings we will use guided observation sheets in line with NHS guidance of good dementia care. In community settings we will use unstructured field notes to record how advice received at appointments helps the management health conditions.
Qualitative interviews: We will conduct qualitative interviews separate to the observational period with up to two people per care network (e.g. a person with dementia, family/friend carer, healthcare professional or homecare worker). We will ask interviewees for further details regarding events observed including participants reactions, thoughts and emotions related to events. Interviews will be conducted at a time and place convenient to participants and be based on topic guides developed from observations. The interviews will be audio-recorded, transcribed and analysed using standard qualitative techniques.REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
20/LO/0288
Date of REC Opinion
2 Apr 2020
REC opinion
Favourable Opinion