Written by Kate Jurgens, bereavement service coordinator, grief counsellor and PhD candidate
Research recognises that there is a significant emotional and financial cost to family carers. Caring for someone who has a life limiting illness, especially over an extended period is known to increase the risk to a carer’s health being negatively impacted. This can lead to greater use of health services, experiences of trauma and increased mortality[1-4]. Caregivers may also experience frustration and difficulty navigating healthcare and support services[5-7]. When the care recipient enters their end-of-life period they may be referred for palliative care support. Specialist palliative services offer support to caregivers throughout a patient’s end-of-life care and following the patient dying. This recognition of caregivers is described in palliative care standards. To better understand what bereavement support is being provided and what caregivers and family want we undertook two studies. One study was a scoping review of bereavement service descriptions of published literature. The other study was a cross-sectional survey of a single site specialist palliative care bereavement service.
Palliative bereavement services tend to offer an open access model for caregivers to seek bereavement support. Information about grief and support pathways is typically provided through service-initiated contact. Some literature suggests that the model of bereavement services is ineffective[10, 11]. Research also reports that grief counselling has limited benefit and may be harmful. However, the claim of harm has been challenged. Further, research also reports benefit from grief interventions. As a bereavement service coordinator and grief counsellor there was a need to reconcile these differing perspectives. Especially as bereaved caregivers report feeling abandoned by services following a patient dying[15, 16]. Two studies were undertaken to investigate these issues.
One study examined how palliative bereavement services defined their purpose, method of service-initiated contact and assessment of need for grief interventions. The other study assessed participant adjustment and the impact and influence of bereavement service-initiated contact and grief counselling interventions. Participant adjustment was assessed using the Prolonged Grief measure, PG-13 . Participants also reported their level of preparedness and how it could be improved and signs of difficulty moving forward.
Bereavement services aimed to facilitate adjustment during the acute period of grief. None sought to provide counselling interventions with all bereaved caregivers. Results showed that service-initiated contact acted as a ‘safety-net’. Services were attentive to identifying problems of adjustment that required additional or different interventions and referred accordingly. The multivariate regression test reflected that poor preparedness, the death of a son or daughter and being of a younger age was associated with an increased risk of developing Prolonged Grief Disorder.
Improvements in how healthcare providers communicated with caregivers were needed across primary and tertiary services and the palliative service. Participants expressed the desire for being listened to and receiving timely and comprehensive information. Improved anticipatory education and guidance about the last days of life and signs of dying was emphasised. A focus on better communication with a patient’s caregiver may also increase caregivers’ preparedness, thereby improving their positive adjustment after a loss. It is hoped that this research leads to a clearer understanding of the function of palliative bereavement services. This is through providing a ‘safety net’ for bereaved caregivers.
Hear more about these studies in ‘Bereaved caregivers’ perspectives on preparedness, moving forward in grief and the role of palliative bereavement service support’ by Kate Jurgens for the RePaDD Lunchtime Seminar Series: https://blogs.flinders.edu.au/repadd/2022/10/25/bereaved-caregivers-perspectives-on-preparedness-moving-forward-in-grief-and-the-role-of-palliative-bereavement-service-support/
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