Deliberative panels : developing recommendations for supporting stakeholder and user involvement

Brearley, Sarah G. and Blake, Susan and Milligan, Christine and Seamark, D. and Thomas, Colleen and Turner, Mary and Wang, Xu and Payne, Sheila A. (2014) Deliberative panels : developing recommendations for supporting stakeholder and user involvement. Palliative Medicine, 28 (6). pp. 641-642. ISSN 0269-2163

Abstract

Background: It is recognised that research in Palliative Care needs to integrate stakeholder and user engagement. Alongside research planning and conduct this can also assist in developing recommendations for policy and clinical practice. Aim: This paper considers a Deliberative Panel approach to the dialogic processing of preliminary data findings from family carer's reflections on dying at home (Unpacking the Home). Though similar to consensus techniques in qualitative research, this approach aims to engage key stakeholders in the process of transforming research findings into policy recommendations. Methods: Two deliberative panels with a total of 31 key stakeholders were held in the UK (Lancaster and London). Key stakeholders included policy makers, clinicians, academics and service users. A four phase deliberative panel was adopted. Phase 1: presentation of preliminary data findings; Phase 2: facilitated discussions; Phase 3: feedback of discussions and identification of recommendations to change policy/practice; Phase 4: ranking of recommendations for presentation to policy makers. Results: Four overarching areas of recommendations for policy and clinical practice were identified: i) practical strategies need to be developed to support family carers at home (key workers, caregiver needs, assistance with medication management, and bereavement follow up); ii) guidance is needed on information (initiatives such as 'tell me once', and information on support before and after death); iii) the importance of place of care over place of death and the potential for the voluntary sector to provide support; and iv) a radical review is needed of the way in which personal social care is provided in order to meet the individualised needs of family carers. Conclusion: This paper suggests a strategy for palliative care researchers to integrate their findings into practical policy recommendations in a transparent and integrative manner, based on public values and attitudes.