How Can the Experience of Hospital Outpatient Departments be Improved?

Neurofibromatosis Type 1 (NF1), NF2-related Schwannomatosis

Neurofibromatosis, NF, sensory challenges, Experience Based Co-Design, outpatient departments, visual impairment, hearing impairment, learning differences, behavioural differences

This project aims to improve outpatient departments by working with patients and staff to make these spaces more inclusive for people with sensory challenges (it focuses on people with nerve tumour conditions as they are more likely to have sensory challenges). The project uses a well-established method called experience-based co-design (EBCD), which supports patients and staff to work together. It will run over 4 years.

Participant experience overview: People can choose to take part in one or more parts of this study. Some patients, carers and staff may be observed in outpatient waiting areas to help the researcher understand how the department works, and anyone who does not wish to be observed can let staff know and will not be included. Patients may be invited to take part in a one-off walking interview during their normal route to an outpatient appointment, and staff may be invited to take part in a single group discussion. Patients and staff who wish to be more involved can also choose to attend workshops over time to identify problems and work together to design improvements. Taking part in later stages is optional, consent is checked at each stage, sessions are audio recorded, and participants can stop at any time without giving a reason. Data will be collected via Experience Based Co-Design (EBCD) stages. EBCD combines ethnographic methods and participatory quality improvement approaches to generate meaningful, co-designed interventions through iterative stages. Individual participants will be able to join as many stages as they would like and will be reconsented for each stage. Stage 1: Observations using ethnographic methods: context setting via researcher field notes exploring and understanding patient, carers and staff experiences of outpatients departments. The researcher will conduct 30 hours of shadowing, static observation and interviews of/with staff, patients and carers in outpatient waiting rooms. Staff will be given information about the observations in department meetings, weekly improvement huddles, and at the department patient and staff forum. Staff will be reminded that observations are taking place in daily huddles. Patients and carers will be informed via posters and leaflets and notified by the department receptionist that a researcher is present and observing activity. Any people who explicitly opt out will not be observed. Only relevant data will be collected, and consent will be gained for any significant interaction or observation but for ethnographic observations, may not be considered formal research participants and it may not be possible to gain consent from each individual observed (i.e. people incidentally present). Ethnographic field notes will be translated into ethnographic transcripts and data will be analysed. Stage 2 (a): Staff focus groups: exploring the experiences and perceptions of outpatient staff supporting patients with sensory challenges in small face-to-face or virtual groups. Up to 12 participants (staff working in the NF and other relevant outpatient departments at Guy's and St Thomas' NHS Foundation Trust) will be invited to take part in a small focus group. The discussions will be directed by topic guides developed from the data gathered via observations (i.e. stage 1) and subsequent discussion with the PPI group, steering group and PhD supervisors. The focus groups will last up to 90 minutes and will be recorded with a Dictaphone. Audio data will be transcribed and analysed. The participants will be offered a voucher to thank them for their time for activities outside work hours. They will be invited to take part in later stages (co-design meetings, improvement groups and the celebration event). Stage 2 (b): Walking interviews: exploring the experiences, perceptions and descriptions of barriers for patients with sensory challenges and their families through point-of-view filmed walking-interviews. Up to 18 participants (patients using the NF department at Guy's and St Thomas' NHS Foundation Trust) will be invited to take part in walking interviews. Walking interviews are 1:1 interviews that take place as the researcher and participant walk together. Although they are called walking interviews, the form of transit will be the usual form used and appropriate to the participant (i.e. via foot, wheelchair, mobility scooter, stretcher, etc.) and with or without carers and family as usual and comfortable. The interviews will be coordinated with existing appointments, and the participants will meet the researcher at the hospital entrance before walking their usual route to their appointment with the researcher. The researcher will obtain full informed consent from the participant in advance but on the day of the interview, before starting, the researcher will briefly explain how the walk will go and what will be discussed. After the interview, the researcher will invite the participant for a short discussion to add details and to check in. The interview will take less than 30 minutes (as long as the usual walk to their appointment). The researcher will wear a mountable video camera to record the walk, and a Dictaphone will record the discussion. The video will be sent to a video editor to obscure the identities of any people incidentally recorded and to be edited together with other patients' walking interviews. The videos will be used by patients and staff in the later stages to provoke discussion. The audio data will be transcribed and analysed. The participants will be offered a voucher to thank them for their time. They will be invited to take part in later stages, but participation is optional rather than expected (co-design meetings, improvement groups and the celebration event). Stage 3: Co-design meetings: establishing priorities for improvement of outpatient departments for patients with sensory challenges through audio recorded patient and staff workshops. Up to 12 participants (patients and staff) will be invited to explore collective responses to the video developed from the walking interviews in stage 2b. Using a topic guide and arts-based tools such as sketching, collaging and annotating photos and maps, participants will establish improvement priorities through up to three co-design meetings each lasting up to 45 minutes. The meetings will be held either face-to-face or remotely to accommodate participants as much as possible and the groups will be comprise of 4 to 8 participants (patients, staff and patients and staff working together). Response to the video and topic guides developed from data gathered in stage 1 and 2 and from discussion with the PPI group, steering group and PhD supervisors will form a loose frame for the discussion. Audio data will be recorded with a Dictaphone/ via the remote platform and transcribed and analysed. The participants will be offered a voucher to thank them for their time (including staff when activities fall outside work hours). They will be invited to take part in later stages, (improvement groups and the celebration event), but participation is optional rather than expected. Stage 4: Improvement working groups: co-designing and developing an intervention to support improvement of outpatient departments for patients with sensory challenges via small audio recorded working groups of patients, carers and staff. Up to 12 participants (patients and staff) will be invited to take part improvement working groups co-designing an intervention responding to priorities identified in stage 3 co-design meetings. Using a topic guide and arts-based tools such as sketching, collaging and annotating photos and maps, participants will design interventions through six to eight co-design meetings each lasting up to 45 minutes. It is hoped participants will take part in all six to eight meetings in this stage. The meetings will be held either face-to-face or remotely to accommodate participants as much as possible. As with the co-design meetings, the groups will be a mix of staff and patients. Topic guides developed from data gathered in stages 1, 2 and 3 and discussion with the PPI group, steering group and supervisors will support discussion but it will primarily be led by priorities identified in the previous co-design groups (stage 3). Discussion will be recorded with a Dictaphone. or via the remote platform and the audio data will be transcribed and analysed. The participants will be offered a voucher to thank them for their time (including staff when activities fall outside work hours). They will be invited to join the celebration event, but participation is optional rather than expected. Review, feedback and dissemination: An event will be held to review the project, to thank participants, and to communicate outcomes to participants, the wider team, and to stakeholders. The event specifics will be agreed through the process.

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United Kingdom