Background Family caregivers are an invaluable but minimally supported workforce that form the backbone of end-of-life care within the home (Rowland, Hanratty, Pilling, et al., 2017. Palliat Med. 31:346; Bijnsdorp, Pasman, Boot, et al., 2020. BMC Palliat Care. 19:1). Based on this need and a service evaluation, we implemented the Emergency Family Caregiver Support (EFCS) model within the Cottage Hospice (Walshe, Barnes, Turner et al., 2021. Health Soc Care Community. 29: 837). The EFCS model provides unplanned admissions for families struggling to care for a dying loved one within their home. Unlike traditional respite models, the EFCS model provides care for patients while also ensuring that changes (care packages and hospital bed delivery) are implemented within the home for a more supported caring experience.
Aim Monitor, evaluate and refine the EFCS model ensuring better caring experience in the home. Identify 1) the difference in patient-initiated contacts with hospice (PICs) and care trajectory following discharge; 2) changes made in the home to facilitate a more positive caring experiences; 3) overall experiences of family caregivers and patients.
Methods Phase 1: literature review, protocol development, and stakeholder consultation. Phase 2 (data collection): average number of 1) admissions, 2) days admitted, 3) PICs* 4) clinician-recorded crisis moments*, 5) admissions into in-patient wards and hospital setting*, 6) discharge setting, as well as written feedback on caring experience* (*before and after admission).
Phase 3: data review, report writing, stakeholder consultation, model refinement and relaunch.
Results 68 admissions since April 2021, with average of 5 admissions/month. 17.6% of admissions deteriorated and became end of life care, with Cottage Hospice as preferred place of death. Patients and family caregivers express increased feelings of empowerment following discharge to the home. Some families recognise that care within the home is unsustainable and care home admission is needed.
Conclusion The EFCS program has demonstrated that it is well suited to helping family members continue caring for their loved ones within their own homes and potentially prevent unnecessary hospice and hospital admissions.
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