"Support is too fragmented": the bereavement needs of carers and the presence of Prolonged Grief Disorder.

Background Whilst the necessity of assessing and meeting family carers’ needs during end-of-life care and into bereavement is widely acknowledged, less attention has been paid to the estimated 10% of family carers experiencing bereavement who develop ‘Prolonged Grief Disorder’ (PGD). PGD, typically formally diagnosed six months post-bereavement, involves a markedly intense reaction to the death of a loved one. Symptoms include difficulty accepting the loss, bitterness, numbness, identity disorientation and a feeling of being stuck in grief. Aims To explore the experience and awareness of bereavement support and PGD with carers and health/social care professionals. Methods A mixed methods study was undertaken. Two focus groups were conducted with carers (n=16) and an online survey administered to a range of health/social care professionals involved in the care of people at the end-of-life (n=59). Thematic analysis of focus group transcripts was undertaken and descriptive statistics used to illustrate summary data from the online survey. Results Our focus group data indicate varying challenges experienced by carers and the need for appropriate pre and post-bereavement support to be provided in order to facilitate a healthy grieving process. Survey data reveal that health/social care professionals were uncertain of the most appropriate course of action to pursue to support carers facing bereavement. Forty (68%) respondents indicated that bereavement-related support could be improved; 24 (42%) respondents had encountered family carers they considered were experiencing PGD; 38 (68%) respondents did not feel able to accurately predict future cases of PGD. Conclusion/Discussion Our data suggest bereavement-related support for carers could be improved, that PGD may be experienced at a higher level, in some populations, than previously supposed and that health/social care professionals face difficulties in reliably identifying the risk of PGD amongst carers.