Abstract

Jessie May is a children’s hospice at home charity which was founded in 1994 by the parents of Jessica May following her death aged 4½ months. Whilst working with the families, Jessie May nurses recognised a need for bereavement support and began to offer parents telephone calls, support visits and send cards to acknowledge the children’s birthday and death anniversaries.

In 2010, a recently bereaved Parent Representative for the Clinical Governance Group observed that, as parents ‘need to grieve for themselves’, there was a gap in the Jessie May bereavement service and initiated discussions around the potential for a parents’ support group. Following this discussion, the parent representative worked with the bereavement lead to set up the Purple Group and trialled an initial four meetings. The core purpose was to enable bereaved parents to come together within a peer group to discuss the loss of their children and feelings around that loss, gaining support through shared experiences and would describe it as ‘therapeutic’ rather than a ‘therapy group’. No one would be pressured to speak, but parents would have the opportunity to share their stories and experiences.

So far there have been 26 meetings over six years. There is empathy within the group and parents listen to each other, giving respect and encouragement. Each meeting has no agenda or topic so parents can talk about anything they choose, although recurring themes focus around anniversaries, Christmas and expectations from others for parents to ‘move on’.

Meetings are arranged a year in advance to enable parents to plan ahead to attend as many meetings as they wish. Jessie May continues to seek informal feedback from parents and by conducting formal questionnaires to ensure they are providing a service that is useful and needed by all of the parents on the Jessie May bereavement caseload.