Informal caregiver quality of life in a palliative oncology population

Duimering, Adele; Turner, Jill; Chu, Karen; Huang, Fleur; Severin, Diane; Ghosh, Sunita; Yee, Don; Wiebe, Ericka; Usmani, Nawaid; Gabos, Zsolt; Patel, Samir; Danielson, Brita; Amanie, John; Roa, Wilson; Fairchild, Alysa

doi:10.1007/s00520-019-04970-3

Cited by 30 publications

(33 citation statements)

References 28 publications

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“…Clearly, the quality of life of relatives of patients with advanced cancer is affected and decreases further as the disease progresses [6,41]. Early palliative care [42,43] including caregivers support such as respite care might be potential interventions to improve the quality of life of relatives.…”

Section: Discussionmentioning

confidence: 99%

Self-care, resilience, and caregiver burden in relatives of patients with advanced cancer: results from the eQuiPe study

Roij

Brom

Sommeijer

et al. 2021

Support Care Cancer

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Purpose Relatives are often involved in caregiving for patients with advanced cancer and carry a heavy burden. Self-care and resilience might be beneficial to enhance their wellbeing and burden-bearing capacity. This study assessed the engagement in self-care and resilience in relatives of patients with advanced cancer and its association with their caregiver burden. Methods This study analyzed baseline data of the eQuiPe study, a prospective longitudinal, multicenter, observational study on quality of care and life of patients with advanced cancer and their relatives in which self-care (Self-care Practices Scale), resilience (Connor-Davidson Resilience Scale), and caregiver burden (Zarit Burden Interview (ZBI)) of relatives were included. Their scores were compared with a gender- and age-matched normative population. Multivariable logistic regression analysis was performed to assess the association between self-care and resilience with caregiver burden. Results Most of the 746 relatives were the patient’s partner (78%) and 54% reported to be an informal caregiver of the patient. The median hours of caregiving a week for all relatives was 15 and 11% experienced high caregiver burden (ZBI > 20). Relatives who reported a high caregiver burden engaged less often in self-care (OR = .87) and were less resilient (OR = .76) compared to relatives with low/medium caregiver burden. Relatives with high caregiver burden were younger (OR = .96), highly educated (OR = 2.08), often reported to be an informal caregiver of the patient (OR = 2.24), and were less well informed about the importance of self-care (OR = .39). Conclusion A significant number of relatives of patients with advanced cancer experienced high caregiver burden. As more self-care and resilience were associated with lower experienced caregiver burden, creating awareness of the beneficial potential of self-care is important. Future studies should illuminate the causal relation. Trial registration number NTR6584 (date of registration: 30 June 2017)

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Section: Discussionmentioning

confidence: 99%

Self-care, resilience, and caregiver burden in relatives of patients with advanced cancer: results from the eQuiPe study

Roij

Brom

Sommeijer

et al. 2021

Support Care Cancer

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“…In a study of 201 surveys, ICs spent an average of 6.6 hours per day performing instrumental and basic activities of daily living (ADLs). 14 Importantly, 55.9% of IC were interested in services that they had not yet accessed, which significantly correlated to higher IC burden. 14 Further, 63.8% had previously access support services, including but not limited to home care (37.2%) and pharmacy (29.1%).…”

Section: Methodsmentioning

confidence: 99%

“… 14 Importantly, 55.9% of IC were interested in services that they had not yet accessed, which significantly correlated to higher IC burden. 14 Further, 63.8% had previously access support services, including but not limited to home care (37.2%) and pharmacy (29.1%). 14 Given that the physical and psychosocial well-being of the patient is entwined with that of their caregivers, interventions designed to improve the experience of former will need to take the latter into account.…”

Section: Methodsmentioning

confidence: 99%

Caring for the caregiver: a systematic review characterising the experience of caregivers of older adults with advanced cancers

Adashek

Subbiah

2020

ESMO Open

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The steady advances in oncology bring a host of therapeutic options for older adults (≤65 years old) with cancer. As these patients experience this proliferation of anticancer therapies, their caregivers too have witnessed their role rapidly expanding and evolving as they care for these individuals. To better understand the caregiver experience, a review of the current literature on informal caregiving and cancer caregiving was conducted. These informal caregivers are often individuals with a strong personal connection to the person with advanced cancer, such as a close relative, spouse/partner or friend. Caregivers provide a broad range of assistance with most aspects of day-to-day life. However, we have limited knowledge of the impact of this role on the caregivers themselves, particularly in the context of an older adult patient and their unique needs. Here, we explore the data on caregiver experience when caring for a person with advanced cancers—specifically, we characterise the symptom burden and effects on the caregiver well-being with emphasis on the care of older adults with cancer.

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“…Due to the severity of the disease, informal caregivers often play an important role in the planning of treatment and care for the patient. 10 The aim of this study was to explore the perspectives and experiences of patients with advanced lung cancer regarding their current role in the coordination of treatment and care across healthcare sectors.…”

Section: Open Accessmentioning

confidence: 99%

What patients with lung cancer with comorbidity tell us about interprofessional collaborative care across healthcare sectors: qualitative interview study

Bossert

Forstner

Villalobos³

et al. 2020

BMJ Open

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BackgroundPatients with lung cancer with comorbidity often require treatment and care by different health professionals, in different settings and at different points in time during the course of the disease. In order to organise and coordinate healthcare efficiently, effective information exchange and collaboration between all involved care providers are required. The aim of this study was to assess the views of patients with advanced lung cancer with comorbidity regarding coordination of treatment and care across healthcare sectors.MethodsThis qualitative study, as part of the main study, The Heidelberg Milestones Communication Approach, used face-to-face guide-based semistructured interviews with patients with advanced lung cancer and their informal caregivers to explore cross-sectoral information exchange and collaboration in Germany. All generated data were audio-recorded, pseudonymised and transcribed verbatim. Data analysis was performed using qualitative content analysis to structure data into themes and subthemes. All data were managed and organised in MAXQDA.ResultsIn 15 interviews, participants reported that cross-sectoral collaboration functioned well, if treatments occurred as planned. However, treatment gaps were experienced, especially regarding medication and regimen. As a result, participants felt insecure and obliged to take responsibility for the coordination of healthcare. Patients reported to be in favour of an active patient role but felt that healthcare coordination should still be a responsibility of a care provider. A more intensive information exchange, potentially by using an electronic platform, was expected to strengthen cross-sectoral collaboration.ConclusionPatients with lung cancer are uncertain about their role in the coordination of treatment and care across healthcare sectors. Healthcare providers should be more aware of care recipients’ willingness of taking on a more active role in healthcare coordination.Trial registration numberDRKS00013469.

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Informal caregiver quality of life in a palliative oncology population

Cited by 30 publications

References 28 publications

Self-care, resilience, and caregiver burden in relatives of patients with advanced cancer: results from the eQuiPe study

Self-care, resilience, and caregiver burden in relatives of patients with advanced cancer: results from the eQuiPe study

Caring for the caregiver: a systematic review characterising the experience of caregivers of older adults with advanced cancers

What patients with lung cancer with comorbidity tell us about interprofessional collaborative care across healthcare sectors: qualitative interview study

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