Pandora's Box is for Closing as Well as Opening: A Participatory Action Research Study exploring the use of learning communities to manage chronic pain

Background: Chronic pain is a condition that severely limits quality of life. The impact of chronic pain on a person, the ways that others interact with people in pain and their responses to this indicate that people with chronic pain are a marginalised and oppressed group. Social action science methods are intended to promote wellness and produce liberation from social oppression. Learning with and from others who have chronic pain through participatory action research methods may lead to emancipation from the social oppression of chronic pain.
Aim: To produce transformation in the lives of individuals who have chronic pain through fostering collaboration in a learning community.
Design: The study was designed as a participatory action research study; participatory methods were used to promote a learning community. Data were collected from several sources: the researcher’s and participant notes, in the form of; flip charts, minutes of meetings, diaries and emails to the researcher. The data were coded and triangulated to provide evidence of action cycling over time.
Participants and Setting: Ten participants were recruited from a chronic pain clinic to form a ‘learning community’, this was held on a university campus over a ten week period, five participants engaged fully with the learning community.
Methodology: Participatory action research methods were used to support and evaluate this learning community.
Results: One identified issue concerned communication and there was evidence that acting to resolve this produced transformation. Preliminary findings showed evidence of the action cycle ‘mastering communication about pain’. The participants’ initial proposition indicated they actively hid their pain from others and that others did not recognise their pain. Reflection identified five aspects: 1) Others not wanting to listen; 2) Refusal to share feelings 3) Failure to solicit help 4) Others not realising the extent of their problems 5) Frustration because others were not aware of their pain. Taking action, through choosing to communicate, transformed this experience and generated perceptions of liberation.
Conclusions Chronic pain patients may hide their pain and avoid seeking help because of their past experiences of communication with others. This may be a manifestation of internalized oppression. Recognition and action may transform the experience of patients.