Using social media to develop a peer to peer bereavement support platform for organ donor families

Developing a peer to peer bereavement support online platform for organ donor families supports enhancing person centred practice through use of data, information and technology.

The intention was to provide families/friends who donate their loved one’s organs at the time of their death, with additional bereavement support and aftercare. The aftercare currently provided by the organ donation organisation is limited. Experience has validated to me the need to enhance the care and support we provide to families/friends following organ donation. The current literature reviewed has demonstrated a need to support families/friends after organ donation. It also highlighted a gap in bereavement support services provided for families/friends following organ donation. With society relying on social media for all aspects of daily living it is an ideal channel to connect the bereaved. The aim of the study is to evaluate the impact of an online peer to peer support network for families of organ donors. The development of a Facebook group for donor family/friends to communicate with one another provides support the difficult days and weeks that they face following donation.

Building a safe online community to enhance the experiences of organ donor families was one of the drivers for development. The initial setting up of the group was relatively straight forward and the engagement and discuss which has taken place has been positive and supportive. It has become evident that there is a need for more bereavement support following organ donation and that organ donor families need a space to connect, gain support, share their lived experiences, and share their bereavement journey. We need to offer organ donor families more bereavement support. Their unique experience of organ donation leaves them asking questions and wondering about recipients of their loved one’s organs. Further bereavement support will alleviate speculation and offer a support method.

Diversifying the support methods needs consideration to ensure the service is inclusive and accessible. The donor families have taken ownership of the peer to peer support group and we need to consider how we support the development of the group so that it can grow and reach more organ donor families.

Social media offers access to authentic data capturing the lived experiences of organ donor families. This can help nurse professionals to improve services, offer bereavement support, and provide access to information. Bringing families together using social media allows them to connect regardless of their location, enabling them to access support at anytime of the day. It brings people together who would normally not have met, so they can share their experiences of this unique phenomenon.