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CRITERIO 3: Con qué número de personas vive y cuántas divisiones tiene la casa
This was a complex study and our approach to public and patient involvement (PPI) was based on the principles that such involvement should be meaningful, respectful, relevant and collaborative. The complexity of the study was not simply because of the nature of the intervention but because of the complexity of the effect mechanism of which we wished to test the feasibility. For many interventions the person receiving the intervention is the target for the potential benefit. This is only partly true in our study where a training intervention was designed for HCAs to improve the relational care of older people in hospital. We took the view at the grant application stage that those whom this study would benefit were both HCAs (the proximal target group for our intervention) and older people who receive care in hospital and their visitors (the distal
target group). This is consistent with the Kirkpatrick model for evaluating training interventions.50The voices
of both these groups therefore needed not just to be heard but also to be at the heart of the content and delivery of the training intervention and, moreover, to inform the way in which staff and patient participants were recruited to the study. The overall purpose of PPI was, therefore, to ensure that both the intervention and the research process would be relevant and acceptable to staff, patients and their visitors.
Presubmission of the grant
Prior to the activation of the grant we worked with the Public and Patient Involvement in Research (PPIRes)
group, an organisation hosted by the South Norfolk Clinical Commissioning Group.59The PPIRes group
brings together volunteer members of the public to collaborate with researchers in local trusts and universities in Norfolk and Suffolk and to develop proposals from the initial idea through to dissemination. At the time of writing it has a panel of approximately 70 lay members. Prior to submission of the grant application we worked with the PPIRes co-ordinator to plan the PPI in the study and to invite panel members to be involved in the development of the application. Twenty-six volunteers responded and a summary of the study document was circulated via the PPIRes co-ordinator for review. The purpose of this was twofold: first, to get informal feedback from panel member views on the questions the study sought to address and on its proposed methods; and, second, to identify potential panel members who might wish to play a more active role should the study be funded. Views on the study were positive. A question was raised on whether or not the staff group should be extended beyond HCAs to OS. This highlighted the potential breadth of application for the intervention, but the focus of the commissioning brief prevented us from incorporating this suggestion. Some panel members expressed uncertainty as to the role of a HCA, and this was an early reminder of the need to check our assumptions about the ability of patients and relatives to distinguish members of the HCA workforce from other care staff. A discussion group was also organised in which all available documents were circulated in advance and six volunteers attended a 3-hour meeting to discuss the application in detail.
Recruitment and study documents
Prior to our application for ethics clearance to conduct phase 1 staff interviews and focus groups with older people, the PPIRes co-ordinator arranged a meeting (7 November 2013) of four panel members and the principal investigator. The purpose of the meeting was to review participant-facing study documents. Consent and participant information sheets based on NHS template documents were adapted in the light of detailed discussion at the meeting. Changes were made to simplify expression of interest forms and participant information sheets. The focus group prompt guide was also adapted, with suggestions made as to how to explain what we meant by relational care to focus group participants. At this point, two of the group became the PPI representatives for the CHAT study and remained so for the duration of the study period. Margaret McWilliams has been a PPIRes member for over 10 years. Her interest in this project stemmed from a carer perspective and a short hospital stay, which emphasised the importance of HCAs and how essential it was to be kept informed of what was going to happen as part of your daily routine. Margaret runs a hearing aid clinic for Norfolk Hearing Support Services where she speaks to many older people about their experiences. Janet Gray has been a PPIRes member for 2 years and is the carer of her parents and relatives who have experienced many hospital stays.
Focus groups
A later section of the report details our work with older people’s organisations to assist with raising
awareness of, and recruitment to, the focus groups (see Chapter 4, Recruitment). In addition, we were keen for PPI representatives to play a key role in the conduct of the focus groups themselves. As our PPI representatives were based at one of the three study centres, local PPI representatives were recruited for this purpose at the other two centres. The contribution of the PPI representative was determined by their own preference and, therefore, varied at each centre. At one focus group, for example, a PPI representative chaired the discussion. At all three focus groups the PPI representative worked with the facilitator to welcome participants as they arrived, clarified facilitator topics and participant discussion as needed and alerted the facilitator to participants who indicated that they had a view to express but were reticent about joining in the discussion.
Intervention development
The process of intervention development is described fully in Chapter 5. The core intervention development team included our two PPIRes representatives together with a HCA from one of our partner trusts working on a ward caring for older people. Collectively, the PPI members worked to keep the focus on the needs of older users of hospital services and to ensure that the training intervention was designed with HCA learners firmly in mind. The group met on four occasions and formed a close knit team to produce what
became the Older People’s Shoes training intervention. Roles inevitably became less demarcated and all
team members became involved in all aspects of intervention development including structure, content, delivery, and proofreading training materials. We consider that the final product was substantially
strengthened by this invaluable contribution. In addition, our HCA representative worked with researchers shortly prior to intervention delivery to ensure that activities were credible to reflect the work experience of HCAs in busy hospitals.
Study oversight
Details of the trial steering group are provided in Study Management. Membership of that group included our two PPIRes representatives as well as a HCA representative recruited via the Royal College of Nursing Health Practitioner Committee. The steering committee provided oversight to all aspects of the study. Our PPI and HCA representatives were vocal and enthusiastic members of this committee, providing sound and thoughtful advice at each stage of the research. They were also very supportive of the research team at points in the process when we hit challenges.
Feedback and reflection on the process of public and patient involvement in the CHAT study
For a relatively short project (2 years) we felt that both the process and outcome of PPI within the CHAT project was successful. We forged strong relationships over a short space of time. Soon after the study end
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point, the PPIRes co-ordinator conducted an informal meeting with our two PPI representatives to hear their views on the PPI process. Both PPI representatives commented on how much they had enjoyed being part of the team and that the experience had been rewarding. They felt their contribution was valued and they appreciated being included in communications beyond formal meetings. They felt that their views had been sought and respected by the steering group, with the chairperson of that group ensuring that they were actively involved in discussions. They were appreciative of travel arrangements for meetings being organised well in advance. Working alongside our HCA representatives had assisted them in understanding the nature
of a HCA’s work, and, by extension, the focus of the study from both a user’s and a caregiver’s perspective.
Summary
The CHAT study was undertaken in centres in England and was conducted in two phases: (1) scoping and intervention development and (2) feasibility testing and process evaluation. In phase 1, data were collected in the form of a telephone survey of NHS hospital trusts, focus groups of older people and interviews with HCAs and staff working with HCAs. Following a process of intervention development, the second phase consisted of a feasibility cluster randomised controlled trial and process evaluation. The training intervention and feasibility testing was informed by guidance on the development and evaluation of
complex interventions and the design of the feasibility study was informed by Kirkpatrick’s four-level
evaluation model.50The study was managed by the principal investigator at the University of East Anglia
and through regular team meetings with the other two centres. Governance arrangements included project management group meetings and five steering group meetings. The backdrop to the study was a rapidly changing landscape in terms of policy developments and initiatives relating to HCA work, most notably the
publication of the Francis report,1and the implementation of the Care Certificate following the Cavendish
review.2PPI was central to each element of the study and was essential in ensuring that both the