Table of Themes
| Enhanced understanding by professionals of patient needs and aspirations (in both breadth and depth) | |
|---|---|
| Sub-themes | Description |
| New insights | There was surprise among professionals at some of the issues highlighted that they were not previously aware of or of which they had not appreciated the importance. This included a greater understanding of why, due to practical or physical limitations, patients cannot always follow the medically advised course of action and mental health aspects of COPD. |
| Firsthand knowledge ‘from the horse’s mouth’ | Through close interaction professionals could hear the issues that patients had and the changes they wanted made and could see the reality of their lives and the issues they dealt with (e.g. using oxygen, eating and breathing and moving around). The impact was emotional and humbling. |
| Appreciation of the range of patient experience | This was achieved through interaction with patients with a range of disease severity from mild to more severe and hearing of their differing challenges and experiences. |
| Hearing hard to reach voices | The process included the voices (either personally present or through PCRs) of patients who would not typically attend a focus group or consultation event. |
| Varied perspectives | Having a greater number of patients present elevated the patient input from token representation to a meaningful voice. |
| Positive experience of participation for patients and professionals | |
| Sub-themes | Description |
| Collaboration, inclusivity and egalitarianism | Participants enjoyed working with each other in a pleasant, friendly atmosphere, with openness and sharing. |
| Mutual understanding | This came through mutual learning amongst both patients and professionals, seeing people’s reality and hearing a range of perspectives from a variety of participants. Patients learned about commissioning and professionals learned about the reality of patients’ and carers’ lives. |
| Engaging and stimulating | Active engagement helped by strong facilitation (not just sitting listening). |
| Freedom for ideas to emerge | There was no pre-determined end point and anonymous voting gave a sense of freedom. |
| Power to make a contribution | Patients felt they were contributing to a process that could result in something influential. |
| Being heard | Patients felt that all information was precious and their issues were not “lost” or “dropped” even if they did not end up in the final outcomes. |
| Problems with participation | |
| Sub-themes | Description |
| Confusion | In the early stages of the workshop it took a while for some participants to fully comprehend the process. |
| Dot voting | Some participants felt this encouraged herd mentality |
| Physical difficulties | Some patients experienced mobility difficulties in a building with long corridors |
| Immediate benefits to patients from taking part | |
| Sub-themes | Description |
| Learning about support and resources and treatments | This came from material presented and discussed at the workshop, and from interactions with professionals. This could have a bigger impact than leaflets or literature. |
| Peer support | Reassurance from knowing that other people have similar issues and the opportunity to share these. |