Author/Editor     Yan Ho, Andy Hau; Car, Josip; Ringo Ho, Moon-Ho; Tan-Ho, Geraldine; Ying Choo, Ping; Patinadan, Paul Victor; Chong, Poh Heng; Ong, Wah Ying; Fan, Gilbert; Pin Tan, Yee
Title     A novel Family Dignity Intervention (FDI) for enhancing and informing holistic palliative care in Asia
Type     članek
Vol. and No.     Letnik 18, št. 1
Publication year     2017
Volume     str. 1-12
ISSN     1745-6215 - Trials
Language     eng
Abstract     Background: The lack of a holistic approach to palliative care can lead to a fractured sense of dignity at the end of life, resulting in depression, hopelessness, feelings of being a burden to others, and the loss of the will to live among terminally ill patients. Building on the clinical foundation of Dignity Therapy, together with the empirical understanding of dignity-related concerns of Asian families facing terminal illness, a novel Family Dignity Intervention (FDI) has been developed for Asian palliative care. FDI comprises a recorded interview with a patient and their primary family caregiver, which is transcribed, edited into a legacy document, and returned to the dyads for sharing with the rest of the patient's family. The aims of this study are to assess the feasibility, acceptability and potential effectiveness of FDI in reducing psychosocial, emotional, spiritual, and psychophysiological distress in community-dwelling and in-patient, Asian, older terminally ill patients and their families living in Singapore. Methods/design: An open-label randomized controlled trial. One hundred and twenty-six patient-family dyads are randomly allocated to one of two groups: (1) an in tervention group (FDI offered in addition to standard psychological care) and (2) a control group (standard ps ychological care). Both quan titative and qualitative outcomes are assessed in face-to-face interviews at baseline, 3 days and 2 weeks after intervention, as well as during an exit interview with family caregivers at 2 months post bereavement. Primary outcome measures include sense of dignity for patients and psychological distress for caregivers. Secondary outcomes include meaning in life, quality of life, spirituality, hopefulness, perceived support, and psychophysiological wellbeing, as well as bereavement outcomes for caregivers. Qualitative data are analyzed using the Framework method. Discussion: To date, there is no available palliative care intervention for dignity enhancement in Asia. This first-of-its-kind study develops and tests an evidence-bas ed, family driven, psycho-socio-spiritual intervention for enhancing dignity and wellbeing among Asian patients and families facing mortality. It addresses a critical gap in the provision of holistic palliative care. The expected outcomes will contribute to advancements in both theories and practices of palliative care for Singapore and its neighboring regions while serving to inform similar developments in other Asian communities.
Keywords     palliative care
primary family caregiver
Asia
paliativna nega
primarni družinski negovalec
Azija