Expert by Experience Pilot Study
Research type
Research Study
Full title
A Pilot Study of Enhancing Pain Related Self-efficacy: Patient Education Sessions and Involvement of Experts by Experience
IRAS ID
274255
Contact name
Paula Christmas
Contact email
Sponsor organisation
Norfolk and Norwich University Hospitals NHS Foundation Trust
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
Research Summary:
A Pilot Study of Enhancing Pain Related Self-efficacy: Patient Education Sessions and Involvement of Experts by Experience.
Given the complexity of chronic pain, the prevalence in the UK and strain on health services, it is critical that an evidence base for interventions is established, particularly those which may reduce the strain on clinical time and resources. This study intends on recruiting out-patients as volunteers (Experts by Experience / EBE) to deliver presentations in chronic pain education sessions for other patients with chronic pain. It will analyse outcomes for both the patients attending the education sessions and the EBE. The outcomes measured will be self-efficacy, pain severity and interference, mood, satisfaction with life and patient experience.
The study duration is intended to be 12 months and will take place at a Pain Management Centre (Norfolk and Norwich University Hospitals Trust, NNUH).
Patients will attend the educational sessions at the service in either a Treatment as Usual (TAU) Group (with professionals, but no EBE) or Experimental Group (with professionals and EBE) and will be invited to complete measures before and after, to capture patient self-efficacy and experience of the session. They will also be invited to a voluntary semi-structured interview to assess outcomes qualitatively.
Experts by Experience will be patients at the Pain Management Centre. They will volunteer to participate, undergo background checks and complete training. Once a group of around 6 EBE are confirmed, they will support one another to create individual presentations about their experiences and pain management strategies. Each EBE will deliver their presentation on a rolling basis (on Tuesdays and Thursdays). The EBE's self-efficacy, pain severity and interference, mood, and satisfaction with life will be measured at 3 intervals throughout the study. They will also be invited to a semi-structured interview to assess outcomes qualitatively.
Lay summary of study results:
Pain management services in the UK and abroad have found positive outcomes after involving Experts by Experience (EBEs) in patient care. EBEs are individuals with lived experience, of chronic pain, who offer knowledge and support to others who wish to learn how to better manage their symptoms.
We wanted to find out if similar outcomes could be observed when involving EBEs in standalone pain management education seminars. We looked at patients’ overall experience of the seminar, and their confidence to make changes before and after the seminar. Additionally, we investigated whether EBEs themselves benefitted from involvement in delivering seminars. We looked into pain severity and interference levels, confidence, mood and satisfaction with life.
Outpatients waiting to attend an educational seminar, as part of their routine care, in an adult Pain Management Service at the Norfolk and Norwich University Hospital Foundation Trust were invited to participate in the study. Participation was voluntary. Participants attended either a seminar with professionals only (Treatment as Usual group/TAU) or a seminar with professionals and an EBE (Experimental Group/EXP). Questionnaires were completed before and after seminar attendance. 176 individuals living with chronic pain took part in the study. To better understand patients’ experiences, eight participants from each group were invited to take part in semi-structured interviews.
We aimed to recruit six EBEs through the Pain Management Service as volunteers; however, only three were retained. Participation was voluntary. Questionnaires were collected at three time points throughout the study. The EBEs were invited to participate in semi-structured interviews to better understand their experiences.
Data was collected through questionnaires and audio-recorded interviews.
We found that involving EBEs in standalone education seminars did not increase patients’ confidence, nor did it improve patient experience. Participants in each group reported that, to an extent, the seminars provided validation, knowledge and supported some behavioural changes in pain management.
We found that the advice offered by the EBE in the EXP group, although validating, led some participants to realise that they will need to learn to live alongside their pain. A small portion of participants in the EXP group also found it difficult to relate to the EBE’s advice because of differences in pain presentations, age and years of living with persistent pain.
Due to the small number of EBEs recruited, meaningful quantitative analysis was not possible. Qualitative findings showed that EBEs benefited from their involvement, reporting increased confidence, a greater sense of purpose, and enhanced feelings of connection with patients, peers, and the multidisciplinary team. Participation also appeared to positively reinforce their own pain management strategies.
The results of the study should be interpreted with caution. Due to COVID-19, staff changes and challenges with recruitment the study took four years to complete. This pilot study did not support a future study, but it has led to helpful reflections on the involvement of EBEs in pain management education seminars and how we can move forwards. Lessons learnt will be discussed in detail for future studies to consider.
REC name
East of England - Essex Research Ethics Committee
REC reference
20/EE/0165
Date of REC Opinion
5 Aug 2020
REC opinion
Further Information Favourable Opinion