Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home (ACEPATH): Codesigning an intervention to improve patient and family caregiver experiences.

BACKGROUND: Returning home from the hospital for palliative-focused care is a common transition, but the process can be emotionally distressing and logistically challenging for patients and caregivers. While interventions exist to aid in the transition, none have been developed in partnership with patients and caregivers. OBJECTIVE: To undergo the initial stages of codesign to create an intervention (Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home [ACEPATH]) to improve the experience of hospital-to-home transitions for adult patients receiving palliative care and their caregiver(s). METHODS: The codesign process consisted of (1) the development of codesign workshop (CDW) materials to communicate key findings from prior research to CDW participants; (2) CDWs with patients, caregivers and healthcare providers (HCPs); and (3) low-fidelity prototype testing to review CDW outputs and develop low-fidelity prototypes of interventions. HCPs provided feedback on the viability of low-fidelity prototypes. RESULTS: Three patients, seven caregivers and five HCPs participated in eight CDWs from July 2022 to March 2023. CDWs resulted in four intervention prototypes: a checklist, quick reference sheets, a patient/caregiver workbook and a transition navigator role. Outputs from CDWs included descriptions of interventions and measures of success. In April 2023, the four prototypes were presented in four low-fidelity prototype sessions to 20 HCPs. Participants in the low-fidelity prototype sessions provided feedback on what the interventions could look like, what problems the interventions were trying to solve and concerns about the interventions. CONCLUSION: Insights gained from this codesign work will inform high-fidelity prototype testing and the eventual implementation and evaluation of an ACEPATH intervention that aims to improve hospital-to-home transitions for patients receiving a palliative approach to care. PATIENT OR PUBLIC CONTRIBUTION: Patients and caregivers with lived experience attended CDWs aimed at designing an intervention to improve the transition from hospital to home. Their direct involvement aligns the intervention with patients' and caregivers' needs when transitioning from hospital to home. Furthermore, four patient/caregiver advisors were engaged throughout the project (from grant writing through to manuscript writing) to ensure all stages were patient- and caregiver-centred.

Grief and bereavement of family and friends around medical assistance in dying: scoping review.

OBJECTIVES: The increase in the number of jurisdictions legalising medical assistance in dying (MAiD) has contributed to a growth in the number of family and friends who may face unique elements of grief and bereavement. The aim of this study was to review the literature of grief and bereavement of family and friends following MAiD, and to summarise findings for the development of community resources and programming. METHODS: We performed a scoping review with workshop consultation of stakeholders. Six electronic databases and the grey literature were searched for qualitative, quantitative and review articles. Content-analytical techniques and multidisciplinary discussions led to the development of concepts and a conceptual framework. RESULTS: Twenty-eight articles met the inclusion criteria. We identified five concepts that impact the grief and bereavement of family/friends: relationships between family/friends and the patient as well as healthcare providers; aspects of MAiD grief which can include secrecy and/or anticipatory grief; preparations which may include family/friends and should be centralised and harmonised; end of life as an opportunity for ceremony; and the aftereffects during which mental health outcomes are studied. CONCLUSION: This multidisciplinary scoping review incorporates stakeholder consultation to find that support is needed to address the complicated and changing emotions of family/friends before, during and after a MAiD death. Furthermore, additional societal normalisation of MAiD is necessary to reduce secrecy and stigma and improve the accessibility of resources for family/friends.