Capturing learning from public involvement with people experiencing homelessness to help shape new physiotherapy research: Utilizing a reflective model with an under-served, vulnerable population.

INTRODUCTION: People experiencing homelessness (PEH) have poorer health than housed people but face barriers accessing care and being involved in research. As an often-ignored group, their contribution to help shape research that is for and about them is essential, as it can strengthen the research proposal, in turn facilitating research and outcomes that are relevant to this vulnerable group. METHODS: Six people with experience of homelessness attended a PPI consultation aided by Pathway, a UK homeless peer advocacy charity, which coordinates an 'Experts by Experience' group. We present reflections on conducting PPI with PEH that informed the development of a physiotherapy research proposal. Kolb's Experiential Learning Cycle guided reflections across four stages: (1) describing the PPI experience; (2) reviewing and reflecting on the PPI experience; (3) learning from the PPI experience; and (4) planning and trying out learning. RESULTS: Reflections highlighted the importance of: working closely with an advocacy organisation and leader to reach under-served people; the diversity of experiences; using familiar venues, contingency and budget planning; flexibility and 'allowing time; talking less; listening more'; planning for early and ongoing PPI, and the potential of mobile 'one-off' PPI outreach models to reach vulnerable groups. CONCLUSION: Kolb's Experiential Learning Cycle aided team reflection on feedback from PEH, which helped refine and strengthen a physiotherapy research proposal. The project was unfunded. However, a reflective model helped maximize learning and impact including for future PPI and research. The novel application of Kolb's Experiential Learning Cycle provided structure, facilitated reflection and enhanced individual and collective learning and may benefit capturing learning from PPI with other vulnerable populations. PATIENT OR PUBLIC CONTRIBUTION: We highlight how a PPI consultation with people with experience of homelessness helped shape a funding proposal. Additionally, the reflections of the experts by experience team leader are included.

A framework for public involvement at the design stage of NHS health and social care research: time to develop ethically conscious standards.

PLAIN ENGLISH SUMMARY: Researchers who conduct studies in health and social care are encouraged to involve the public as early as possible in the process of designing their studies. Before their studies are allowed to start researchers must seek approval from a Research Ethics Committee, which will assess whether the study is going to be safe and ethical for patients or healthy volunteers to take part in. The process of ethical review does not consider how researchers work with patients and the public early on to design their studies. Furthermore, there is no requirement for researchers to seek ethical approval for public involvement. However, in our work advising researchers about public involvement we have found that the ways in which researchers involve the public in the design of their studies are sometimes unintentionally unethical, and this is the focus of our paper. We have observed ten areas where ethical issues may arise because of the actions researchers may or may not take and which might consequently have a negative impact. Therefore, we have used these observations to develop a "framework" to help researchers and the public work together at the early design stage in ways that are ethical. Our intention for the framework is to help researchers be mindful of these ten areas and how easily ethical issues can arise. The framework suggests some ways to overcome the potential issues in each of the ten areas. The ten areas are: 1) Allocating sufficient time for public involvement; 2) Avoiding tokenism; 3) Registering research design stage public involvement work with NHS Research & Development Trust Office at earliest opportunity; 4) Communicating clearly from the outset; 5) Entitling public contributors to stop their involvement for any unstated reasons; 6) Operating fairness of opportunity; 7) Differentiating qualitative research methods and public involvement activities; 8) Working sensitively; 9) Being conscious of confidentiality and 10) Valuing, acknowledging and rewarding public involvement. We looked to see whether any other similar approaches to helping researchers address potential ethical issues when working with the public on designing studies have been published and to our knowledge none exist. Our framework is presented as a draft and believe that it would now benefit from input from researchers and the public to gauge how useful it is and whether there are any other possible situations that it might need to cover. ABSTRACT: The current paper highlights real life examples of how ethical issues can arise during public involvement activities at the research design stage. We refer to "the research design stage" as the time between the generation of the research ideas and when formal permissions to start the work including ethical approval are granted. We argue that although most researchers work ethically at this early stage, some may still benefit from being informed about ethically conscious approaches to involving the public. The paper highlights 10 ethical issues that we have observed with involving the public at the research design stage. We provide examples of these observed scenarios to illustrate the issues and make suggestions for how they can be avoided to help researchers become more ethically conscious when involving the public at the research design stage. Currently the draft framework comprises: 1) Allocating sufficient time for public involvement; 2) Avoiding tokenism; 3) Registering research design stage public involvement work with NHS Research & Development Trust Office at earliest opportunity; 4) Communicating clearly from the outset; 5) Entitling public contributors to stop their involvement for any unstated reasons; 6) Operating fairness of opportunity; 7) Differentiating qualitative research methods and public involvement activities; 8) Working sensitively; 9) Being conscious of confidentiality and 10) Valuing, acknowledging and rewarding public involvement. The draft framework will help researchers to recognise the ethical issues when involving the public and is intended to be used voluntarily in a self-regulatory way. We believe that the draft framework requires further consultation and input from the wider research community and the public before endorsement by national UK bodies such as INVOLVE and the Health Research Authority (HRA).

Social integration, a sense of belonging and the Cenotaph Service: old soldiers reminisce about Remembrance.

OBJECTIVES: This study explored how war commemorations such as the Cenotaph Service in the UK enable older veterans to benefit from a feeling of integration and belonging gained from both comradeship and acknowledgement from wider society. METHOD: Focus groups preceded by a video clip of the Cenotaph Service with 45 veterans were used to discuss the significance of collective commemorations for older veterans. RESULTS: Findings indicated that social integration and a sense of belonging are fostered both by comradeship and societal support during collective commemorations allowing veterans to reminisce safely. Spontaneous reminiscences involving troubling memories may be processed more easily with the support, social integration and sense of belonging which occurs at collective commemorations. Many Korean War and female World War II veterans felt forgotten and socially isolated, but described gaining vicarious support via collective commemorations. Cohen and Wills' (1985) main-effects and buffering models of social support are used to discuss the findings further. CONCLUSION: Collective commemorations can be important sources of support for many older veterans. Both comradeship and societal support promote social integration and a sense of belonging (main-effects), which enabled reminiscing and processing (buffering) to occur.