Article Text
Abstract
Background People with serious illness face multiple losses which necessitates a new way of living. Many experience a loss of meaning and purpose. There is a need for interventions to support people exploring opportunities for growth despite their changed circumstances.
Aim to develop and test the feasibility of an intervention that is based on the principles of posttraumatic growth and seeks to foster a stronger sense of meaning and purpose and that is relevant and appropriate to palliative care settings.
Methods Using participatory action research methodology, the intervention was designed in an iterative process with both health professionals and people with lived experience of a terminal illness. Further feedback from program participants and facilitators was then used to modify and refine the program before finalisation. The face to face group program was pilot tested over six weekly sessions each for two hours. Outcome measures include the Symptom Assessment Scale, FACIT-Sp, HADS and a qualitative interview. Ethics approval was obtained. Qualitative analysis was conducted using framework analysis.
Results Three major themes:
Engagement; Self-reflection and Empowerment.
Engagement
The theme of ‘Engagement’ describes how participants interact with others, both in taking part in the program and with family or other people during the course of their illness. Group interaction during the program demonstrated the care participants showed towards each other e.g. dealing with the expression of emotion; trust was demonstrated by how participants allowed themselves to display emotion as they knew their fellow group members would understand their situation.
Self-reflection
The theme of ‘Self-reflection’ in response to the program offered participants an opportunity to listen to other participants’ stories and consider their own situation. In particular, many commented on how, despite perceiving individual differences, they could learn from the similarities of their shared experiences. Many participants were open to learning more about how to manage differently while living with serious illness, however some participants felt this was not possible. Self-reflection and being open to learning allowed participants to consider alternative views about what was important in each individual’s life and one’s capacity to make changes to live life in a positive manner for the benefit of the individual, their family and friends.
Empowerment
The theme of ‘Empowerment’ describes the realisation that participants are able to manage their life differently in a way that still has meaning and purpose. Prioritising, making choices, and setting differently configured goals for oneself became ways of living with purpose and hope. Through self-reflection and discussion with others, many participants stated how they now felt they were better able to discuss and prepare for the future with close family and friends, with some stating a new found purpose and/or determination to benefit others while the participant is able.
Conclusions The Embrace program shows promise at addressing the widespread challenge of finding new sources of meaning and purpose for those living with serious illness.