Advancing education and support around death, dying and bereavement: hospices, schools and health promoting palliative care

Abstract

Background: This thesis stemmed from my experience as a hospice social worker. In this role I was aware that children were often excluded from conversation, education and support about death, dying and bereavement and was keen to explore how the Hospice team could address this issue. My practice experience paralleled UK policy making on end-of-life care, which argued for discourse on death, dying and bereavement to be promoted in the community to help prevent negative end-oflife and bereavement experiences (Scottish Government 2008; Department of Health 2008; Department of Health 2010). In Scotland, engaging with schools to equip children with skills and knowledge to cope with death and bereavement has been emphasised (Scottish Government 2010). These policy movements recognise the significance of public health approaches to end-of-life care, which focus on the multi-dimensional (physical, psychological and social) nature of problems and required solutions. Recently, such approaches have been gaining recognition concerning their contribution to end-of-life care. It has been suggested that hospices are well situated to promote such activities due to their expertise in end-of-life care (Salau et al. 2007). Aim and objectives: This thesis aimed to explore, implement and evaluate models of best practice in which hospices and schools can work in partnership to promote education and support around death, dying and bereavement from a health promotion perspective. It specifically sought to increase understanding about current practice in primary schools related to death, dying and bereavement and develop practice knowledge about the role of the Hospice in working with school communities to enhance such work. Methods: The research was facilitated in two primary schools in Scotland, using collaborative inquiry within an action research methodology. It was conducted over three phases. Phase one (preparation and scoping) involved a literature review, visits to other hospices and focus groups with hospice staff. Phase two (exploration) included a series of interviews and focus groups with children aged 9 – 12 years, parents and schools staff to develop collaborative inquiry and engage in a process of change. Phase three (planning and developing) comprised of deciding and advancing models of practice. Findings: Practice innovations were identified at each school that were of relevance to the school curriculum, the relationship between hospices and school communities, and the relationship between hospices and the wider society more generally. These innovations can be understood as health promoting palliative care activities, as defined by Kellehear (2005), due to the process in which they were designed and their focus on developing capacity to respond to death, dying and bereavement. Conclusion: The action research process identified the significance of sharing and transferring knowledge across and between hospice and school communities. It demonstrated that hospices have unique capacity to develop conversation, education and support around death, dying and bereavement in school communities. In order to fulfil this potential role, this will require a reorientation of service delivery that focuses on wider training, support, awareness raising and advocacy. The study has also demonstrated that action research is well situated to develop health promoting palliative care activities according to the shared goals of participation, ownership and empowerment.