Background In Yorkshire, there were five paediatric organ donors in 2017/18. Very limited bereavement support is offered to families whose children donate organs (Berntzen & Bjørk, 2014). Changes to the Specialist Nurse Organ Donation (SNOD) role meant that SNODs felt unable to provide donor families with adequate bereavement support. This led to a broadening of hospice acceptance criteria, where deceased children, without known life-limiting conditions (Widdas, McNamara & Edwards, 2013) could use the cool bedrooms (Forrester, 2008) for post-mortem care, and their families access bereavement support offered by the hospice. Since 2017/18, a total of four children have been cared for post-donation.
Aim To explore the perceptions and experience of registered nurses involved in caring for families of children and young people who have donated organs in children’s hospice cool rooms.
Methods A semi-structured focus group was conducted with nurses from the Yorkshire Organ Donation Services Team, and Martin House in March 2018. Purposeful sampling was used (Richie, Lewis, McNaughton Nicholls et al., 2013), based on nurses who either:
Whilst working as a SNOD, referred a child and family to the hospice following organ donation
Whilst working at the hospice, cared for the body of a child after organ donation, and their family.
Results Five core themes emerged from the thematic analysis: (i) barriers that prevented families from receiving the care they need, (ii) bereavement support, (iii) impact: on families, SNODs and professionals, (iv) influencers and enablers of change, and (v) sustainability of services.
Conclusions Nurses perceived that families gained much from the bereavement support offered by the hospice, and from being able to spend time with their child’s body after death. Although some of the grief experiences of families was different to what hospice nurses were used to, staff gained confidence as their exposure increased. Joint working between the organisations enhanced bereavement care for families. Links between organisations were achieved through joint learning opportunities and hospice visits.
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