Accessing Out of Hours Primary Care with Dementia
Research type
Research Study
Full title
Accessing Out of Hours Primary Care with Dementia
IRAS ID
253127
Contact name
Jemima Dooley
Contact email
Sponsor organisation
University of Bristol
Duration of Study in the UK
1 years, 6 months, 1 days
Research summary
Summary of Research
The research team want to explore how decisions are made when people with dementia and their companions/professional carers access primary care out of hours (i.e. evenings, weekends and nights). This is a feasibility study: the findings will feed into a future project that will develop an intervention to help clinicians, people with dementia, and their companions/professional carers make decisions when accessing out of hours primary care.How is it of relevance and importance to patients and public?
People with dementia have more comorbid conditions and are more likely to be admitted to hospital than people without dementia, and are thus a vulnerable patient group when accessing healthcare out of hours. Communication impairments in dementia and the involvement of professional and family carers cause challenges to appropriate decision making in care settings.What area is being studied? Who would be eligible?
The study is looking at all people with a diagnosis of dementia accessing out of hours primary care.In what type of sites will the study be conducted?
The study will analyse out of hours GP telephone calls (through 111 and out of hours services), and face-to-face GP consultations run by out of hours services.How long will the study last and what will the participants undergo?
The study lasts 18 months in total. People with dementia will be involved for a maximum of 1 month, clinicians a maximum of 1 year. Recordings of consultations will be recorded and analysed, and their contents will be discussed with clinicians, people with dementia and their companions/professional carers in interviews.Summary of Results
People with dementia are often marginalised in health care due to the effects of the condition on short term memory and communication. This project explored communication in urgent care (GP home visits) to see how clinicians included people living with dementia in discussions and treatment.The project used a method called Conversation Analysis. The researcher shadowed urgent care clinicians and, with the person with dementia's consent, video recorded home vists in an urgent care service. The recordings were transcribed and analysed to identify patterns in the communication. A Patient and Public Involvement group of people with dementia and those who care for people with dementia supported the project from the start, developing the protocol and co-analysing the data.
Seventeen out-of-hours home visits were video recorded. These took place in care homes and patient homes. The analysis identified an important part of the visit where there is a challenge for clinicians, and this is called the 'Problem Presentation' and used Conversation Analysis to describe this in more detail.
Problem presentation is a key area of primary care consultations where patients 'have the floor', and hence are able to direct the consultation discussion to achieve certain ends. An exploration of how patients with advanced dementia participate in this stage of the consultation therefore demonstrated their participation and subsequent engagement. In all 17 cases in the data in this project, the carer had called the out of hours service on behalf of the patient. Rather than traditional questions that doctors use at the start of consultations to allow patient problem presentation, i.e. "what can I help you with?", clinicians instead stated their 'reason-for-visit' using information provided by the carer. We found that all the patients with dementia showed some disagreement with this presented reason-for-visit, either by denying the existence of current symptoms and/or their involvement in the decision to call the doctor. Carers appeared to show respect for the patient's ownership of their experience, only providing input on invitation from doctors or patients. Patient acknowledgement and willingness to engage in examination were needed for the clinician to be able to examine the patient and recommend treatment. However, patient agreement with the reason-for-visit was not needed and often patients showed resistance to the clinician's presence throughout.
In two consultations, the reason-for-visit was not explained to patients, and in both cases this resulted in the person with dementia showing frustration and resistance to examination. People with dementia may resist doctor home visits for many reasons, such as embarrassment for not remembering symptoms, or stoicism in the face of medical ailments.
These findings show that clinicians have a hard balance between making sure people with advanced dementia are fully aware of why they are visiting them, but also needing to do their job as they have been requested by the person's carer.
REC name
Wales REC 2
REC reference
18/WA/0418
Date of REC Opinion
18 Jan 2019
REC opinion
Further Information Favourable Opinion