BEREAVEMENT AFTER CANCER-RELATED DEATH: A LONGITUDINAL MIXED-METHODS RESEARCH (BE-CARED PROJECT)

Background

More than 27.000 cancer patients die each year of cancer in Belgium (Van Eyken et al., 2017). Bereavement care should be an essential part of palliative care (Morris & Block, 2015). However, palliative care services still adopt a blanket approach to supporting bereaved families regardless of risk or need (Abbott, O’Connor & Payne, 2008; Agnew, Manktelow, Taylor & Jones, 2010; Guldin et al. 2013, Gotze et al. 2014). Despite this urgent call to organise bereavement care that is tailored to needs and risks, the situation is complex for a variety of reasons. First, there is a paucity of data on bereavement needs and bereavement needs of relatives after cancer-related death. Second, the landscape of dying has changed markedly. End-of-life (E-o-L) care decision-making has become more complex and diverse due to the increase of therapy restriction options and the possibility to grant a euthanasia request (Verkissen et al., 2018). In practice questions are raised whether a loss due to euthanasia is followed by a different pattern of adaptation (i.e., risks and needs) than a cancer-related loss due to other causes.

Aim

The overarching objective of this study is investigate the needs and risks regarding bereavement experiences of relatives of cancer patients, in order to formulate recommendations regarding bereavement care in a landscape of diverse end-of-life care practices. Particularly, the project has the following 5 objectives and 7 related work packages (WP):

Objective 1. To study the risks of maladaptation in grief following cancer-related death.

Objective 2. To study the needs of bereaved caregivers of cancer patients before, during and after euthanasia.

Objective 3: To study the accuracy of risk assessment by health care providers

Objective 4: To study the needs of health care providers in euthanasia practice

Objective 5. To valorize and disseminate our findings into practice recommendations drawn up by different stakeholders (bereaved relatives, health care providers, educators).

 Method

This is a mixed methods study with qualitative and quantitative data being collected concurrently to enable triangulation of findings. Data collection will take place by means of (1) paper questionnaires sent out to (bereaved) relatives and health care providers for self-completion, and (2) face-to-face interviews with bereaved relatives and health care providers.