When chemotherapy fails: Emotionally charged experiences faced by family caregivers of patients with advanced cancer

Rodenbach, Rachel; Norton, Sally A.; Wittink, Marsha N.; Mohile, Supriya G.; Prigerson, Holly G.; Duberstein, Paul R.; Epstein, Ronald M.

doi:10.1016/j.pec.2018.12.014

Cited by 22 publications

(56 citation statements)

References 56 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Caregivers may find it challenging to convince their loved ones of a poor prognosis or may even collude with the patient's optimism, inducing distress. This association has been shown in a prior study 17 . Caregivers may also have the added pressure of planning for end‐of‐life care in the midst of patient's optimism.…”

Section: Discussionsupporting

confidence: 68%

“…Studies have shown that disagreements between patients and caregivers in the reporting of symptoms, the description of treatment side effects and benefits, and estimates of prognosis are common 7,14‐16 . Disagreement between patients and caregivers about treatment benefits, care decisions, and the patient's health is associated with negative outcomes, such as increased patient depression 14 as well increased caregiver anxiety, distress, depression, and burden (ie, the latter refers to stress experienced by caregivers from providing care for patients) 16‐19 …”

Section: Introductionmentioning

confidence: 99%

“…7,[14][15][16] Disagreement between patients and caregivers about treatment benefits, care decisions, and the patient's health is associated with negative outcomes, such as increased patient depression 14 as well increased caregiver anxiety, distress, depression, and burden (ie, the latter refers to stress experienced by caregivers from providing care for patients). [16][17][18][19] In a study of patients of all ages with advanced cancer and their caregivers, Trevino and colleagues reported that 50% of dyads disagreed on the chance of the patient living >2 years. 7 In a separate study of patients with any cancer diagnosis, Shin and colleagues reported that 24% of dyads disagreed on the chance of a cure.…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Patient and caregiver agreement on prognosis estimates for older adults with advanced cancer

Loh

Celis

Duberstein

et al. 2020

Cancer

Self Cite

View full text Add to dashboard Cite

BACKGROUND: Disagreements between patients and caregivers about treatment benefits, care decisions, and patients' health are associated with increased patient depression as well as increased caregiver anxiety, distress, depression, and burden. Understanding the factors associated with disagreement may inform interventions to improve the aforementioned outcomes. METHODS: For this analysis, baseline data were obtained from a cluster-randomized geriatric assessment trial that recruited patients aged ≥70 years who had incurable cancer from community oncology practices (University of Rochester Cancer Center 13070; Supriya G. Mohile, principal investigator). Patient and caregiver dyads were asked to estimate the patient's prognosis. Response options were 0 to 6 months, 7 to 12 months, 1 to 2 years, 2 to 5 years, and >5 years. The dependent variable was categorized as exact agreement (reference), patientreported longer estimate, or caregiver-reported longer estimate. The authors used generalized estimating equations with multinomial distribution to examine the factors associated with patient-caregiver prognostic estimates. Independent variables were selected using the purposeful selection method. RESULTS: Among 354 dyads (89% of screened patients were enrolled), 26% and 22% of patients and caregivers, respectively, reported a longer estimate. Compared with dyads that were in agreement, patients were more likely to report a longer estimate when they screened positive for polypharmacy (β = 0.81; P = .001), and caregivers reported greater distress (β = 0.12; P = .03). Compared with dyads that were in agreement, caregivers were more likely to report a longer estimate when patients screened positive for polypharmacy (β = 0.82; P = .005) and had lower perceived self-efficacy in interacting with physicians (β = −0.10; P = .008). CONCLUSIONS: Several patient and caregiver factors were associated with patient-caregiver disagreement about prognostic estimates. Future studies should examine the effects of prognostic disagreement on patient and caregiver outcomes.

show abstract

Section: Discussionsupporting

confidence: 68%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Patient and caregiver agreement on prognosis estimates for older adults with advanced cancer

Loh

Celis

Duberstein

et al. 2020

Cancer

Self Cite

View full text Add to dashboard Cite

show abstract

“…The time during which the caregiver provides care and the severity of the symptoms may impact the degree of depression they may suffer [10,11]. However, some studies indicate that it may not be the disease's duration overall, but more specifically, the terminal phase duration, associated with a significant emotional impact on family caregivers [21].…”

Section: Introductionmentioning

confidence: 99%

COPD at the end of life: Predictors of the emotional distress of patients and their family caregivers

Soto‐Rubio¹,

Valero‐Moreno²,

Palencia³

et al. 2020

PLoS ONE

View full text Add to dashboard Cite

Background Few studies have focused on patients' emotional distress with end-stage chronic obstructive pulmonary disease (COPD) and their main family caregivers. Methods Cross-sectional data about emotional, functional, and burden-related variables were collected from 85 patients with end-stage COPD and their 85 respective main family caregivers to determine the variables that could predict their emotional well-being. Descriptive analyses, comparison of means, hierarchical regression models, and comparative quali-quantitative analyses were carried out. Results Data show that the great majority of patients with COPD spend years with this diagnosis, and have been admitted to the hospital several times in advance stage of illness the previous year of the moment of end-of-life stage. Furthermore, only a tiny percentage of the patients were functionally independent in the advanced stage of illness. Conclusions The emotional distress and the burden of the family caregiver play an essential role in the distress of the patient, in conjunction with the patient's own functional independence and the time living with the disease, and comorbidity. On the other hand, variables of the patient, such as time since diagnosis, number of hospital admissions, comorbidity, functional dependence, and emotional distress, play an important role in the family caregiver's emotional distress and burden. Understanding how these variables are related is key to designing appropriate programs to reduce the emotional distress the patients with COPD at the end of life and their family caregivers.

show abstract

“…Social research on prognosis has revealed some of the interpersonal aspects of clinical encounters including the use of evasion, euphemism and anecdotes of outliers in order to maintain hope, preserve patient–clinician relationships and foreground a ‘silver lining’ within bad news 22–24. Of the research that has been completed on caregivers’ experiences of prognosis in oncology environments, the majority has been conducted in palliative care settings,25 26 with a focus on concerns specific to the end of life, and the negative impacts on caregivers’ quality of life 27. We still have very little knowledge about how caregivers experience prognostic encounters around cancer, including how they navigate their own need for knowledge and understanding (eg, certainty and realism), alongside the needs of the person for whom they are caring (eg, hope and optimism).…”

Section: Introductionmentioning

confidence: 99%

Cancer caregivers’ experiences of prognosis in Australia: a qualitative interview study

et al. 2020

View full text Add to dashboard Cite

ObjectivesForecasting survival in cancer is a particularly challenging facet of oncological work and can involve complex interactions with patients and their families. While there is considerable research on patient experiences of being provided with, or becoming aware of, their prognosis, there has been much less emphasis placed on the experiences of caregivers. The aim of this paper was to examine caregivers’ experiences of prognosis.DesignThis study used semistructured interviews; transcripts were analysed thematically using the framework approach. These data are part of a larger research project focused on experiences of cancer survivorship.SettingRecruitment was from two metropolitan hospitals in Queensland, Australia.Participants50 caregivers of patients living with cancer and receiving treatment at two metropolitan hospitals (32% male, 68% female) participated in this study.ResultsFour main themes were identified: (1) caregivers’ uncertainty around the meaning and implications of prognosis, (2) caregivers’ sense of exclusion in prognostic conversations, (3) the practice of situating prognosis within a context of hope and (4) the precarious balance between realism, optimism and strategic ‘ignorance’.ConclusionsCaregivers are in many respects the unseen third party of prognostic communication. Developing a better understanding of caregivers’ perceptions of prognosis, including how this may be challenged, accepted or otherwise, is important in engaging caregivers in the process of communicating prognostic information. Facilitating greater participation by caregivers in prognostic conversations could potentially address evident complexities and even improve the experiences of all stakeholders in cancer care settings.

show abstract

When chemotherapy fails: Emotionally charged experiences faced by family caregivers of patients with advanced cancer

Cited by 22 publications

References 56 publications

Patient and caregiver agreement on prognosis estimates for older adults with advanced cancer

Patient and caregiver agreement on prognosis estimates for older adults with advanced cancer

COPD at the end of life: Predictors of the emotional distress of patients and their family caregivers

Cancer caregivers’ experiences of prognosis in Australia: a qualitative interview study

Contact Info

Product

Resources

About