Who makes decisions about healthcare?

How are these decisions made?

Involving people with communication disabilities

The aim of the project is to develop guidelines to help health care staff to interact with people who have communication difficulties.

This article is the follow-up to the research project called Having a Say, in the Autumn 2001 edition of Speaking Out.

Why did we do the project

Previous research found that people have difficulties getting information about their health and feel excluded from decisions that are made about their health care, particularly if they have communication disabilities. We wanted to explore in detail the barriers and facilitators to including people with communication disabilities in decisions about their health care. Our aim was to develop guidelines giving practical ways for patients and staff to support communication and involvement.

What did we do

Interviewed 24 people with communication disabilities (including people who stammer)
Interviewed 24 health and social care staff from a range of medical, administrative and voluntary organisation groups
Developed guidelines about how to support communication and involvement, with advice from an advisory group and focus group which included people with communication disabilities.

What we found

People with communication disabilities (including people who stammer) described many experiences of poor communication and lack of involvement from health and social care providers. They described feelings of isolation, frustration, humiliation, embarrassment, anger and depression.
"I avoid social situations...end up in the corner at parties...go into self preservation mode and stop talking."
"I have sympathy for the listeners...I pull a funny face when I block. I look agonised...they get embarrassed."
"I don't ask the doctor questions...I don't like to expand on things, my stutter gets worse."

All those interviewed described how other people's responses to them could act as a barrier or facilitator to communication and involvement. For example:
"If the doctor is relaxed...I communicate better and don't stutter so much."
"It thwarts me if they interrupt, I like people to wait."
"The doctor doesn't know how to deal with people...it's not my stammer that's the problem...something wrong with the other person, their management skills."

People who stammer described a range of strategies for dealing with communication difficulties, including adapting their own communication and asserting their "rights" in conversation.
"It's better if I go slow, relax, breathe."
"If they butt in I ask the person to let me finish and not interrupt me."

Time and continuity of care were two important factors in facilitating communication in health care interactions. When people felt rushed by health care staff, this would make them less willing to communicate and discuss their concerns. People who stammered described how feeling rushed made their stammer worse.
"I didn't go back for my follow-up appointment...he wants you in and out...if they don't listen I switch off."
"First appointment...the nurse was abrupt...now she waits for me to finish and gives me time to say what I want to say...feel I can ask her any questions."

It seemed that the more experience someone had of living with their communication disability, the wider the strategies adopted for dealing with situations. People with stammers described how with age they became less worried about the negative responses of other people and more assertive about their needs, "age breeds confidence".

However, having a communication disability sometimes led people not to receive the care they needed.
"I rang the surgery in an emergency...I tried to get out what I wanted to say but I was stuttering...she put the phone down on me...I rang 999 and asked them for help."

They identified the need for more training for health care staff about communication disabilities. Specific tips for effective communication included:
get to know me
give time for me to talk
wait for me to think
eye contact (although not all stammerers found this helpful)
listen actively
ask me how you can support my communication
use plain language
put yourself in my shoes
do not interrupt or finish off sentences for me
do not assume that because I have difficulties talking, I cannot think.

As the key issue identified by those interviewed was the lack of knowledge and awareness of health and social care staff about how to communicate effectively with people with communication disabilities, we concluded that there was a need for a resource to support communication between patients with communication disabilities and health care staff.

What is happening next

We have started a new project, funded by the NHS Executive (London) called Making Sense in Primary Care to develop a communication booklet to support people with communication disabilities in health care. Based on the findings of the Having a Say project, it will also include the perspectives of carers, young people with speech and language difficulties, and adults with learning disabilities. The booklet will be evaluated at a later stage.

Relevance of the project to people who stammer

We hope that the communication booklet will support communication between health care staff, people with communication disabilities (including people who stammer), and carers (where appropriate) in health care interactions, leading to better quality care.

Thanks to
NHS Health in Partnership Research Programme
British Stammering Association and all its members who helped recruit people to the project and took part in interviews.
David Preece who contributed his time, enthusiasm and experience to the project.

Research team
Professor Sally Byng, Dr Susie Parr, Sharon Farrelly (City University, London)
Professor Louise Fitzgerald (De Montfort University, Leicester)
Sara Ross (Communications Forum) www.communicationsforum.org.uk

For more information
Sharon Farrelly,
Connect, 16 - 18 Marshalsea Road,
London SE1 1HL.
020 7367 0850.
sharonfarrelly@ukconnect.org

Department of Health website address
http://www.doh.gov.uk/research/rd3/information/findings.htm

From the Winter 2002 edition of Speaking Out