Illustration 1.

Combining PPI and PBA feedback and resolving tensions where they arise

Eczema Care Online (ECO) is a NIHR funded programme (PR-PG-0217-20,007) involving the development and evaluation of two online interventions to support eczema self-care: one for parents / carers of children with eczema aged 0–12 years, and one for young people aged 13–25 years. The interventions were developed following the Person-Based Approach (PBA) to intervention development, alongside PPI input.

The ECO project team includes two adult PPI contributors who have been involved from the very start of planning the funding application. Once funding was secured, we also involved two youth PPI contributors in the project. Not all PPI contributors were able or wished to be involved in all aspects of the project. For example, our youth PPI contributors were only involved in some of the tasks below, but their input was still invaluable throughout intervention development.

Our two adult PPI colleagues are fully integrated into the research team. They are invited to all management meetings and are included on all project circulations. Our PPI contributors are invited to input on all aspects of the project, including all protocol discussions and co-authoring outputs. As part of our intervention development group, which also includes clinicians, psychologists, and skin researchers, our PPI contributors have been involved in:

• Developing intervention objectives

• Defining target user characteristics and intervention guiding principles

• Developing qualitative interview guides

• Nomenclature of eczema treatments such as topical corticosteroids (flare control creams)

• Interpreting key messages from qualitative research and systematic reviews

• Intervention planning and design

• Commenting on all draft intervention materials

• Planning the trial of the interventions

• Planning process evaluation

Development of the ECO interventions followed the PBA. We conducted a systematic review of the qualitative literature, a secondary analysis of qualitative interviews with young people with eczema, and primary qualitative interviews with parents of children (aged 0–12 years) with eczema, children (aged 6–12 years) with eczema, and young people (aged 13–25 years) with eczema. This research enabled us to develop our intervention guiding principles. It also informed the theory-based activities we carried out alongside the PBA, such as identifying barriers and facilitators to target behaviours as part of our behavioural analysis, and constructing a logic model of how we anticipate the intervention to result in behaviour change and core trial outcomes.

During intervention optimisation, draft intervention materials were assessed in qualitative think aloud interviews. We selected participants to ensure we included a wide range of people. The intervention was optimised through an iterative process, incorporating user feedback where possible. Data from qualitative participants was considered alongside feedback from the intervention development group, which included PPI, clinicians, Health Psychologists, and skin researchers.

The intervention development group provided feedback that was incorporated into the draft materials, although tensions between their feedback and data from qualitative participants arose at times. For example, our intervention development group favoured the use of medical terminology and giving participants all the information they may need. Participants in the think aloud interviews, however, sometimes found medical terminology off-putting and often found the volume of information overwhelming.

A core aspect of the interventions was a series of videos developed to reinforce target behaviours. We worked closely with our PPI contributors to develop the initial video scripts and storyboards. We also received additional PPI input on the video development through the Nottingham Centre of Evidence Based Dermatology’s patient panel, alongside input from research participants in qualitative think aloud interviews. While research participants and PPI feedback concurred on many points and both shaped the development of the videos, the feedback differed in some respects. For instance, members of the patient panel thought that the messages in the videos were too basic and perhaps a little childish. However, participants in the think aloud interviews felt that the videos were one of the most helpful aspects of the intervention with many saying the content was novel and that it helped explain key messages. Members of the patient panel are often particularly well informed about their condition and in this instance; we felt that the feedback from the research participants might be a stronger indication of how the videos would be received by the target audience of people fairly new to managing eczema.

Views emerging from our research participants were usually given precedence over the views of our intervention development group, unless it was deemed medically inaccurate or potentially harmful. When these tensions arose, we had open and frank discussions with our PPI contributors and other colleagues in the intervention development group who were fully supportive of following the PBA to ensure the interventions are grounded in the views and perspectives of the people who will use them.