When Family Life Contributes to Cancer Caregiver Burden in Palliative Care

Benson, Jacquelyn J.; Washington, Karla T.; Landon, Olivia J.; Chakurian, Daphne E.; Demiris, George; Oliver, Debra Parker

doi:10.1177/10748407231167545

Cited by 7 publications

(3 citation statements)

References 65 publications

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“…al highlighted four main themes of familial distress in the families of a caregiver: failed support, relational tensions, denial, and additional care work. 8 As such, dysfunctional family dynamics potentially explain why stress and subsequent mental health issues increased in our sample of caregivers.…”

Section: Discussionmentioning

confidence: 92%

Cancer caregivers are primarily motivated by love and sense of duty

Gupta,

Hurley,

Mangal

et al. 2024

Health Psychology Research

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Cancer is a debilitating disease for which patients often need caretakers to help them live their lives and complete basic activities. This study aims to characterize the burden of the caretaker. A 14-question survey was sent out to randomly selected United States cancer caretakers to analyze the social, emotional, and physical burden of their caretaking. The results show that a majority of caretakers are direct family to the patient (69.5%). The patients’ cancers are often in early stages with about 54.5% having stage 1 cancer and 22.5% having stage 2 cancer while only 8.5% had stage 3 cancer and 17.8% had stage 4 cancer. When asked about their motivation, caretakers most often do it because of love (58.82%) with family responsibilities/duty being the second highest reason (35.56%). When asked about their biggest burden, many caretakers said that grief was the biggest issue (30.50%) with mental health issues also being troublesome (28%). 75.6% of respondents said that being a cancer caretaker has negatively impacted their mental health from either anxiety (37.29%), depression (33.9%), or other conditions (4.41%). When asked about the negative impacts of being a caregiver, 43.5% stated they faced high financial costs to give care, and 35% stated they met a lack of social support or lost friends. In comparison, 33% stated they had negative physical impacts. The number of participants who face overwhelming or high stress nearly quintupled from baseline, from 13% to 59.5%. This cross-sectional survey of US adults demonstrates that there are clear negative impacts on cancer caregivers on their physical, financial, social, and mental health. These data underscore the importance of taking care of patients’ caregivers.

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Section: Discussionmentioning

confidence: 92%

Cancer caregivers are primarily motivated by love and sense of duty

Gupta,

Hurley,

Mangal

et al. 2024

Health Psychology Research

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“…However, the toll on these unsupported caregivers' physical health suggests that their need is signi cant. A recent qualitative study reported cancer caregivers implicitly expect other family members to offer support without having to directly ask [37].…”

Section: Discussionmentioning

confidence: 99%

Where you begin is not necessarily where you end: the mental and physical health trajectories of cancer caregivers over time

Wilson-Genderson,

Thomson,

Siminoff

2023

Preprint

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Purpose Cancer caregiving, a critical component in the cancer-care model, has deleterious effects on the caregiver’s physical and mental health. The degree to which these negative effects are uniformly experienced by caregivers is unclear. The impact of the secondary caregiver’s absence on the primary caregivers’ well-being is understudied. Methods Terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics and followed for six months or until patient death. Longitudinal latent growth models were used to characterize the heterogeneity of caregiver physical health and depressive symptoms; characteristics associated with these trajectories are examined. Results Caregivers were majority female (74%), white (55%) and patient spouses (60%). Two physical health (moderate, stable; initially good, declining) and two depressive symptom (moderate, stable; high, increasing) trajectories were identified. Declining physical health was more likely among caregivers who were healthiest at baseline, had higher levels of education, lower subjective burden, fewer depressive symptoms, cared for patients with fewer functional limitations and reported fewer caregiving tasks rendered by a secondary caregiver. Those with increasing depressive symptoms were more likely to be white, patient’s wife, have higher subjective caregiver burden, lower physical health, and care for a patient with greater functional limitations. Conclusions Decreasing physical health was evident among caregivers who were initially healthier and reported less assistance from secondary caregivers. Increasing depression was seen in white, female spouses with higher subjective burden. Sample heterogeneity revealed hidden groups unexpectedly at risk in the primary cancer caregiver role to which the oncology care team should be alert.

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“… 9 Caregiver burden is a multidimensional concept related to the physical symptoms, psychological distress, impaired social relationships, spiritual distress and financial strain that arise from caregivers. 10 11 In the context of advanced lung cancer, as psychological distress and associated fatigue interference affect patients’ functioning, family caregivers of lung cancer patients are required to spend longer time performing care duties for patients while neglecting their own vital activities. 12 Coping with demanding role changes and increased caregiving burden can significantly disrupt daily routines, impact caregivers’ mental and physical health, thus influencing their sense of meaning in life.…”

Section: Introductionmentioning

confidence: 99%

Effects of acceptance and commitment therapy on fatigue interference in patients with advanced lung cancer and caregiving burden: protocol for a pilot randomised controlled trial

Li,

Wong,

Jin

et al. 2024

BMJ Open

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IntroductionCancer-related fatigue is common in patients with advanced lung cancer. It not only interferes with patients’ health-related quality of life, but also increases the caregiving burden of their caregivers. Acceptance and commitment therapy is emerging as a novel way to advocate accepting negative experiences and taking effective actions based on their own values to help patients commit meaningful actions in the course of cancer diseases. This trial aims to test the feasibility, acceptability and preliminary effects of acceptance and commitment therapy for fatigue interference in patients with advanced lung cancer and the caregiver burden.Method and analysisA two-arm, assessor-blind pilot randomised controlled trial will be conducted. A total of 40 advanced lung cancer patient–caregiver dyads, who live in rural areas, will be recruited from a university-affiliated hospital in central China. The participants will be randomised to receive an online six-session acceptance and commitment therapy (i.e. involving metaphors, experiential exercises and mindfulness exercises facilitated by virtual reality technology) plus health education (intervention group, n=20) or health education (control group, n=20). Outcomes will be measured at baseline and 1 week postintervention. The primary outcomes are study feasibility (i.e. eligibility rate, recruitment rate, attrition rate and adherence rate), fatigue interference and caregiver burden. The secondary outcomes are health-related quality of life, meaning in life, psychological flexibility and mindful attention. Semistructured interviews will be conducted to explore the feasibility and experiences of the intervention in a subsample of 10 participants from the intervention group.Ethics and disseminationThis study has been approved by the Joint Chinese University of Hong Kong-New Territories East Cluster Clinical Research Ethics Committee (CREC Ref. No. 2023.030) and the Medical Ethics Committee of Xiangya Hospital Central South University (No. 202305336). The findings will be disseminated in peer-reviewed journals and through local or international conference presentations.Trial registration numberNCT05885984.

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When Family Life Contributes to Cancer Caregiver Burden in Palliative Care

Cited by 7 publications

References 65 publications

Cancer caregivers are primarily motivated by love and sense of duty

Cancer caregivers are primarily motivated by love and sense of duty

Where you begin is not necessarily where you end: the mental and physical health trajectories of cancer caregivers over time

Effects of acceptance and commitment therapy on fatigue interference in patients with advanced lung cancer and caregiving burden: protocol for a pilot randomised controlled trial

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