Caregivers of palliative care patients shoulder sustained demands eroding their quality of life

Abstract Family caregivers sustain the palliative trajectory of people with advanced cancer, yet little is known about how service configuration shapes their quality of life (QoL). To compare the multidimensional QoL of caregivers assisting patients in outpatient versus home palliative-oncology programmes and to assess the influence of patient performance status. A cross-sectional survey enrolled 62 caregiver-patient dyads (37 outpatient; 25 home care) from a Northern Italian palliative network. Caregiver demographics, relationship, cohabitation and weekly care hours were collected, together with patient age, sex, diagnosis and functional status (Karnofsky Performance Status [KPS] and Eastern Cooperative Oncology Group [ECOG]). QoL was measured using the Adult Carer QoL questionnaire (seven subscales plus total index). Group differences were examined with Mann-Whitney and t-tests. Home-care caregivers demonstrated higher total QoL (mean ± SD = 89.2 ± 10.8) than outpatient peers (79.5 ± 14.3; p < 0.01). Pronounced advantages for the home group were observed in “support for caring” (12.3 vs 8.5; p < 0.0001), “caring choice” (10.7 vs 8.9; p < 0.01) and “money matters” (10.7 vs 8.9; p < 0.001). No setting differences emerged for caring stress, personal growth, sense of value, ability to care or satisfaction. Caregiver QoL did not vary across patient KPS or ECOG categories (p > 0.34). Delivery setting, rather than patient functional decline, is the principal determinant of caregiver QoL. Outpatient caregivers report poorer support, restricted autonomy and heavier financial strain, signalling the need for respite, counselling and flexible scheduling within ambulatory oncology. Integrating caregiver-centred indicators into routine evaluation could strengthen family resilience and advance the European Public Health agenda for equitable, person-centred palliative care. Key messages • Caregiver QoL rises with home-based palliative care; outpatient carers suffer reduced support, autonomy and greater financial strain. • Respite, financial counselling and flexible schedules in ambulatory oncology can close the QoL gap and fortify family resilience.

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Publication Details

Journal
European Journal of Public Health
Published
2025-10-01
DOI
https://doi.org/10.1093/eurpub/ckaf161.1461
Primary Topic
Palliative Care and End-of-Life Issues
Type
article
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article

Caregivers of palliative care patients shoulder sustained demands eroding their quality of life

Matteo Martinato, Darío Gregori, Honoria Ocagli
European Journal of Public Health
Palliative Care and End-of-Life Issues
article

Caregivers of palliative care patients shoulder sustained demands eroding their quality of life

Matteo Martinato, Darío Gregori, Honoria Ocagli
article en

Abstract

Abstract Family caregivers sustain the palliative trajectory of people with advanced cancer, yet little is known about how service configuration shapes their quality of life (QoL). To compare the multidimensional QoL of caregivers assisting patients in outpatient versus home palliative-oncology programmes and to assess the influence of patient performance status. A cross-sectional survey enrolled 62 caregiver-patient dyads (37 outpatient; 25 home care) from a Northern Italian palliative network. Caregiver demographics, relationship, cohabitation and weekly care hours were collected, together with patient age, sex, diagnosis and functional status (Karnofsky Performance Status [KPS] and Eastern Cooperative Oncology Group [ECOG]). QoL was measured using the Adult Carer QoL questionnaire (seven subscales plus total index). Group differences were examined with Mann-Whitney and t-tests. Home-care caregivers demonstrated higher total QoL (mean ± SD = 89.2 ± 10.8) than outpatient peers (79.5 ± 14.3; p < 0.01). Pronounced advantages for the home group were observed in “support for caring” (12.3 vs 8.5; p < 0.0001), “caring choice” (10.7 vs 8.9; p < 0.01) and “money matters” (10.7 vs 8.9; p < 0.001). No setting differences emerged for caring stress, personal growth, sense of value, ability to care or satisfaction. Caregiver QoL did not vary across patient KPS or ECOG categories (p > 0.34). Delivery setting, rather than patient functional decline, is the principal determinant of caregiver QoL. Outpatient caregivers report poorer support, restricted autonomy and heavier financial strain, signalling the need for respite, counselling and flexible scheduling within ambulatory oncology. Integrating caregiver-centred indicators into routine evaluation could strengthen family resilience and advance the European Public Health agenda for equitable, person-centred palliative care. Key messages • Caregiver QoL rises with home-based palliative care; outpatient carers suffer reduced support, autonomy and greater financial strain. • Respite, financial counselling and flexible schedules in ambulatory oncology can close the QoL gap and fortify family resilience.

European Journal of Public HealthVol. 35(Supplement_4)
University of Padua (IT)
Openalex Percentile: Top 59%
Palliative Care and End-of-Life Issues
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