A novel Family Dignity Intervention (FDI) for enhancing and informing holistic palliative care in Asia: study protocol for a randomized controlled trial

Abstract

BackgroundThe 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/designAn open-label randomized controlled trial. One hundred and twenty-six patient-family dyads are randomly allocated to one of two groups: (1) an intervention group (FDI offered in addition to standard psychological care) and (2) a control group (standard psychological care). Both quantitative 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.DiscussionTo date, there is no available palliative care intervention for dignity enhancement in Asia. This first-of-its-kind study develops and tests an evidence-based, 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.Trial registrationClinicalTrials.gov, ID: NCT03200730. Registered on 26 June 2017.Electronic supplementary materialThe online version of this article (doi:10.1186/s13063-017-2325-5) contains supplementary material, which is available to authorized users.

Trauma to Transformation: The Lived Experience of Bereaved Parents of Children with Chronic Life-Threatening Illnesses in Singapore

“…The in-depth understanding of the lived experience of parental bereavement in the Asian context obtained in this study suggest that grief counselling with Asian populations must place greater emphasis on familial and social connections, which play a critical role in providing support in end-of-life care [39]. It could be useful for clinicians to draw upon novel and effective psycho-socio-spiritual interventions such as Family Dignity Intervention (FDI) which aim to enhance palliative care in the Asian context [40]. Although FDI has till date been studied in the context of patient-family dyads, it is possible that the FDI approach of meaning-oriented interviews can facilitate dyadic exchange for grieving parents, promote understanding of each other's unique sense-making and coping strategies in response to child loss and establish a common ground for parents and their families to better support each other [41].…”

Trauma to Transformation: the lived experience of bereaved parents of children with chronic life-threatening illnesses in Singapore

“…It is possible that solution-focused counseling strategies which emphasize parent-caregivers' existing resources (such as the support of their spouse and other family members) can help to reduce the demands of caregiving and facilitate families to work together in meaningful ways. It could also be useful for clinicians to draw upon novel psycho-socio-spiritual interventions such as Family Dignity Intervention (FDI) which aim to enhance palliative care in the Asian context [45]. Although FDI has till date been studied in the context of patient-family dyads, it is possible that the FDI approach of meaning-oriented interviews can facilitate dyadic exchange for grieving parents, promote understanding of each other's unique sense-making and coping strategies in response to child loss and establish a common ground for parents and their families to better support each other [46].…”

A Novel Narrative E-Writing Intervention (NeW-I) for Parents of Children with Chronic Life-Threatening Illnesses: Protocol for an Open-Label Randomized Controlled Trial

“…Two effective examples of applying the meaning-reconstruction approach and the narrative approach in supporting holistic end-of-life care are Dignity Therapy [21,27,28] and Family Dignity Intervention [29], both of which are evidence-based psychotherapies that addresses the physical, psychosocial and existential issues pertaining to one's dignity at end-of-life. Specifically, Family dignity intervention is designed to support the collective experience of grief and loss for Asian families facing mortality, and it could add great value to a pre-loss intervention for parents of children with chronic lifethreatening illness.…”

“…The development and evaluation of NeW-I is informed by the medical research council framework for the development and evaluation of complex interventions [39,40], the meaning-reconstruction model [42], the narrative approach to anticipatory grief [43], dignity therapy [27,28], and family dignity intervention for holistic end-of-life care [29], and guided by the findings of a recent investigation on Asian parental bereavement experience of child loss by our research team [10]. The objectives of this It is hypothesized that intervention group participants who successfully complete NeW-I will experience enhanced quality of life, spiritual well-being, sense of hope and perceived social support, and decreased depressive symptoms, subjective caregiver burden and risk of complicated grief as compared to control group participants.…”