“The person was like the glue in the cracked pot which was no longer there”: co-production of the web-based Families and Friends in Bereavement intervention

Abstract

Background Families, friends and support networks are key to managing bereavement. COVID-19 social restrictions prevented families and friends from being with the dying and participating in usual rituals to honour the dead. This resulted in social disconnection, feelings of guilt, and difficulty in making sense of the death and reconstructing relationships. In response to this context a theoretically informed, co-produced web-resource to facilitate meaning-making, which situates bereavement in the context of family and friends, was developed. This paper describes the development of the web-based intervention. Study aims To co-produce a web-based intervention theoretically informed by the family level extension Dual Process Model and Family Sense of Coherence, and pilot the intervention gaining user feedback to inform refinements in readiness for adoption and implementation. Methods Following a scoping review, a mixed methods study was undertaken using an online survey via questionnaire and virtual co-production workshop with bereaved people and bereavement professionals. Results Survey respondents (n=32) reported the pandemic negatively affected bereavement (guilt, isolation, inability to bear witness) but also presented new opportunities to celebrate the deceased and support the bereaved (new funeral rituals, technology, remote contact, social acknowledgement of grief). Sense-making and managing bereavement were helped through information-giving, support networks, and relocating the person within the family context. A web-resource to facilitate collective grief was viewed positively and endorsed. Key content including family activities to stimulate support, information regarding the range of grief experience and dealing with the practicalities, along with other sources of support was agreed by workshop participants (n=5) to form the basis of the intervention. Conclusion The publicly accessible Families and Friends in Bereavement intervention encourages consideration of bereavement in the context of close social networks. It enables grief to be understood and managed within a shared experience by promoting communication and meaning-making.