Ramathibodi Hospital, Bangkok, Thailand
Background: The terminal stage cancer patients suffer from disease and related therapeutic processes, lead to increasing need for caring from their caregivers. This affects the quality of life(QOL) of caregivers. Currently, there is no data on burden of caregivers who caring for cancer patients who are choose to die at their home. Objective: This study examined burden of caregivers, impact on QOL and satisfaction of caregivers for patients with terminal cancer, comparing in the group of patients who die at home versus at hospital, comparing in regular care group(RC) versus palliative care group(PC). Methods: The semi-qualitative-quantitative study enrolled caregivers of advance cancer patients who had PPS < 60 at Ramathibodi Hospital from Dec 2021-Nov 2022. We assessed participants on 3-time-points (enrolment, 1, 2 months) for QOL and burden via telephone interviews, questionnaires by EQ5D5L and Zarit Burden. If the patients passed away, we interviewed caregivers in qualitative study. Analysis responses were recorded, transcribed and organized thematically analyzed. Analysis stratified on care with palliative care or not, and place of death. Results: We enrolled 108 participants, child (56%) and spouses (29%). They spent carring time average of 16.56 hr/day. 52 patients have passed away: home death(34) and hospital death(18). No significant difference in burden score and QOL between RC and PC. Burden score significantly increasing when time of death approach in both groups. However, significantly higher satisfaction score in caregivers of patients who died at home(P < 0.001). In patient who died in hospital, early integrated palliative showed significantly higher satisfaction score(P = 0.046). Qualitative analysis revealed 3 primary themes, 1) caregiver burden is increasing and chronic stress condition until the death of their loves and still continue post their death 2) need more help in coping and nursing strategies, more early palliative care can relieve their distresses 3) opinion of the caregivers in group of hospital death, If they could turn back time, they would have promised to look after their lovers better in changing the pass away at their home. Conclusions: Caregivers for terminal cancer patients have a high burden. However, caregiver of patients who died at their home rather have more satisfaction. Early integrated palliative care improves satisfaction in caregiver of patients who died at hospital.
Place of death | EQ 5D 5L score | Zarit score | ||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|
Sample | Baseline | Sample | 1 month | Sample | 2 month | Sample | Baseline | Sample | 1 month | Sample | 2 month | |
Home (total) | 34 | 0.93 | 17 | 0.92 | 3 | 0.97 | 34 | 10.03 | 17 | 10.88 | 3 | 13.00 |
No palliative | 10 | 0.95 | 4 | 0.94 | 1 | 0.94 | 10 | 8.90 | 4 | 8.25 | 1 | 8.00 |
Palliative | 24 | 0.92 | 13 | 0.92 | 2 | 0.95 | 24 | 10.50 | 13 | 11.69 | 2 | 15.50 |
Hospital (total) | 18 | 0.95 | 8 | 0.91 | 1 | 0.82 | 18 | 8.89 | 8 | 10.83 | 1 | 17.00 |
No palliative | 7 | 0.96 | 2 | 0.90 | 0 | 0.00 | 7 | 7.71 | 2 | 9.50 | 0 | 00.00 |
Palliative | 11 | 0.94 | 6 | 0.92 | 1 | 0.82 | 11 | 9.64 | 6 | 10.67 | 1 | 17.00 |
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