Ward RoUNd CommunIcaTion for Autistic PatiEnts in Mental Health UNITE
Research type
Research Study
Full title
Exploring the Perceptions of Autistic People and Staff of Social Communication in Ward Rounds with Real Life Practice
IRAS ID
237327
Contact name
Alison Drewett
Contact email
Sponsor organisation
University of Leicester
Duration of Study in the UK
3 years, 1 months, 2 days
Research summary
Research Summary
The multi-method qualitative research study investigates how communication occurs in ward rounds in mental health hospitals from the perspective of autistic individuals and staff. The study entails semi-structured interviews with participants and video recordings of their ward rounds. The design allows the researcher to hear what participants’ know and understand about their own or others’ autistic social communication, and to explore their perceptions about the character of ward round communication. However, it also moves beyond people’s views about autism and social communication and their perceptions of how interaction takes place, to enable the researcher to see how communication really happens in ward rounds. In this sense, the research investigates the differences between what is thought to happen in ward rounds (and individuals’ ideas about ideal communication), and compare it with real life.
The author is aware from her clinical practice and research that individuals often hold misconceptions about the nature of communication impairment in autism which inevitably impacts on hospital communication. There may also be a particular issue for the more functionally able autistic patients, typically found on generic mental health wards, because their social communication needs are masked by verbal competencies and may go unaddressed in the ward round. Underpinning this investigation is a focus on how staff understand, address and improve their practise to meet invisible communication needs of autistic patients.
Ward rounds are the research site because they are key to care management apparatus and yet they have not been the focus of much research. Although the researcher is predominantly interested in how professionals interact with patients, this site offers an opportunity to examine the involvement of families. Thus, the study also considers how current health theory, for example, person-centred approaches feature in these encounters (if at all). The research also aims to identify improvements to ward round communication.
Summary of Results
The research examined staff and client communication in mental health hospital settings. The research took place in two different mental health settings: a general adult mental health hospital and a learning disability specialist service. The clients were autistic adults who were in hospital because they had issues with their mental health.
Autism is a medical diagnosis that means someone experiences difficulties with social communication and interaction, as well as having rigid and repetitive behaviours. Autistic adults are more likely to have mental health difficulties, to die younger and have a poorer quality of life than the general population. They are also more likely to face barriers while they are in healthcare partly because they have communication differences.
Policy states that it is best practice to involve clients in any decision making about their care. It also advises that healthcare organisations need to make reasonable adjustments for autistic people and individuals with learning disabilities. This is important to make sure that people have the best chance to receive the right care, at the right time, and at the right place.
The study involved two methods. First, ward rounds were videoed as they happened normally in the hospital. Health staff, the clients and their families normally attended ward rounds to discuss the individual’s care, identify best ways to support the person to get better and make plans for discharge. This shows care as it happens in practice. The second method involved collaborative interviews with the clients and their staff. The interviews gave an opportunity for the researcher to ask them about their experiences of care and communication both in ward rounds and in the hospital generally. This provided information about what people imagined happened (their perceptions). It was then possible to compare what happened in practice and what people said happened and to try and explain any differences.
The UNITE study examined involvement as well as communication because the study found that autistic people with learning disabilities were unlikely to be directly involved in their ward rounds. Also, involvement and communication are closely related to each other. The study used reflexive thematic analysis for the interview data. It used critical discursive psychology to analyse the ward round data.
The following findings came out of the study:
• Ward rounds are reported to be challenging experiences for autistic people.
• Clients were not all routinely involved in their ward rounds. Clients with learning disabilities did not attend.
• Staff created novel ways to ensure that client voices were still heard in the meetings, but these were not always used or reported in meetings.
• Doctors chaired all of the meetings and whilst they supported staff voices, they still made final plans for future care.
• Mental health overshadowed autism and autistic needs were not always met. There was very little reference made to autism in the meetings. Yet, many clients reported that there autism played a big role in their mental health difficulties.
• There was a better understanding of autism in the learning disability service. They did have more experience of autism, but they also demonstrated more examples of team working to understand their clients better outside of the ward rounds.
• Staff in the learning disability team used an autistic framework as a way to understand clients more than in the general wards.
• Staff in the learning disability team were also more like to talk about the person’s strengths and competencies that was the case in the general setting.
• Communication was still overly reliant on talk and there was very little use of other means (e.g., signing, visual supports or writing).
• Staff felt that they were involving clients in ward rounds, but this was not always agreed by clients. They could feel coerced and that whilst decisions were being made in their best interests, they felt that were not being listened to.
• Families played a critical role in providing a client voice and this was largely seen as positive by staff and clients.
• Autistic communication difficulties were overly thought of as impairments or deficits in the person. Staff were not always aware of the part they played in supporting people to have better communication.Recommendations
1. There needs to be more reflection by staff about why clients are not present and to monitor this. For example, register non-attendance, confirm the client has been asked if they wish to attend, detail the reasons for non-attendance and discuss if supports can be in place to support attendance or involvement.
2. Autism needs to be better understood in mental health services. It needs to be part of how mental health professionals talk about and understand their clients.3. There needs to be more value given to different means of communicating and not just verbal expression.
4. Staff need to recognise themselves as part of the communication and see their role both as supporters and as communication partners.
5. There needs to be broader understanding of client voice. It is not just the person being able to be present and expressing themselves. It is also about how others represent them and how people speak on their behalf.
6. There need to be more use of advocacy.
7. Learning disability staff have more experience and more skills in caring for autistic people. There needs to be better sharing of skills between services even with the same Trust.
8. There is a strong case for caring for autistic people with mental health needs in a specialist provision.
REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
18/WM/0336
Date of REC Opinion
11 Feb 2019
REC opinion
Further Information Favourable Opinion