TY - JOUR

T1 - Deliberative panels

T2 - developing recommendations for supporting stakeholder and user involvement

AU - Brearley, Sarah G.

AU - Blake, Susan

AU - Milligan, Christine

AU - Seamark, D.

AU - Thomas, Colleen

AU - Turner, Mary

AU - Wang, Xu

AU - Payne, Sheila A.

PY - 2014/6

Y1 - 2014/6

N2 - 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.

AB - 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.

KW - United Kingdom

KW - bereavement

KW - caregiver

KW - clinical practice

KW - consensus

KW - death

KW - feedback system

KW - follow up

KW - human

KW - medication therapy management

KW - palliative therapy

KW - planning

KW - policy

KW - processing

KW - qualitative research

KW - scientist

KW - social care

KW - worker

U2 - 10.1177/0269216314532748

DO - 10.1177/0269216314532748

M3 - Meeting abstract

VL - 28

SP - 641

EP - 642

JO - Palliative Medicine

JF - Palliative Medicine

SN - 0269-2163

IS - 6

ER -