scholarly journals Psychological burden in family caregivers of patients with advanced cancer at initiation of specialist inpatient palliative care

2019 ◽  
Vol 18 (1) ◽  
Author(s):  
Karin Oechsle ◽  
Anneke Ullrich ◽  
Gabriella Marx ◽  
Gesine Benze ◽  
Julia Heine ◽  
...  
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Associated Factors ◽  
Sleep Disturbances ◽  
Anxiety Symptoms ◽  
Psychological Burden ◽  
Severe Anxiety ◽  
Care Outcome ◽  
Item Scale

Abstract Background This study prospectively evaluated distress, depressive and anxiety symptoms as well as associated factors in family caregivers (FC) of advanced cancer patients at initiation of specialist inpatient palliative care. Methods Within 72 h after the patient’s first admission, FCs were asked to complete German versions of the Distress Thermometer, Generalized Anxiety Disorder 7-item scale (GAD-7), Patient Health Questionnaire depression module 9-item scale (PHQ-9) for outcome measure. Multivariate logistic regression analyses were used to identify associated factors. Results In 232 FCs (62% spouses/partners), mean level of distress was 7.9 (SD 1.8; range, 2–10) with 95% presenting clinically relevant distress levels. Most frequent problems were sadness (91%), sorrows (90%), anxiety (78%), exhaustion (77%) and sleep disturbances (73%). Prevalence rates of moderate to severe anxiety and depressive symptoms were 47 and 39%, respectively. Only 25% of FCs had used at least one source of support previously. In multivariate regression analysis, being female (OR 2.525), spouse/partner (OR 2.714), exhaustion (OR 10.267), and worse palliative care outcome ratings (OR 1.084) increased the likelihood for moderate to severe anxiety symptom levels. Being female (OR 3.302), low socio-economic status (OR 6.772), prior patient care other than home-based care (OR 0.399), exhaustion (OR 3.068), sleep disturbances (OR 4.183), and worse palliative care outcome ratings (OR 1.100) were associated with moderate to severe depressive symptom levels. Conclusions FCs of patients presenting with indication for specialist palliative care suffer from high distress and relevant depressive and anxiety symptoms, indicating the high need of psychological support not only for patients, but also their FCs. Several socio-demographic and care-related risk-factors influence mental burden of FCs and should be in professional caregivers’ focus in daily clinical practice.

Prevalence and Predictors of Distress, Anxiety, Depression, and Quality of Life in Bereaved Family Caregivers of Patients With Advanced Cancer

2019 ◽  
Vol 37 (3) ◽  
pp. 201-213 ◽  
Author(s):  
Karin Oechsle ◽  
Anneke Ullrich ◽  
Gabriella Marx ◽  
Gesine Benze ◽  
Feline Wowretzko ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Depressive Symptoms ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Anxiety Symptoms ◽  
Bereaved Family ◽  
Severe Anxiety ◽  
Item Scale

Objective: To investigate prevalence and predictors of postloss distress, depressive and anxiety symptoms, and quality of life among bereaved family caregivers of patients with advanced cancer. Methods: Prospective multicenter study. Family caregivers (N = 160, mean age 56.8 years, 66% female) completed validated outcome measures (Distress Thermometer, Generalized Anxiety Disorder 7-item scale, Patient Health Questionnaire depression module 9-item scale, SF-8 Health Survey Questionnaire) 6 months after patient’s discharge or death at specialist inpatient palliative care ward. Results: Clinically relevant distress was observed in 82% with sadness (89%), exhaustion (74%), sleeping problems (68%), loneliness (53%), and sorrows (52%) being the most common distress-causing problems. Moderate/severe anxiety and depressive symptoms were observed in 27% and 35%, respectively. Compared to an adjusted norm sample, quality of life was significantly impaired with exception of “bodily pain” and physical component score. Preloss caregiving (odds ratio [OR] 2.195) and higher preloss distress (OR 1.345) predicted high postloss distress. Utilization of psychosocial support services (OR 2.936) and higher preloss anxiety symptoms (OR 1.292) predicted moderate/severe anxiety symptoms, lower preloss physical quality of life (OR 0.952), and higher preloss depressive symptoms (OR 1.115) predicted moderate/severe depressive symptoms. Conclusion: Preloss mental burden showed to be a consistent predictor for postloss burden and should be addressed during palliative care. Future research should examine specific caregiver-directed interventions during specialist palliative care.

scholarly journals Cancer-Related Pain in Older Adults Receiving Palliative Care: Patient and Family Caregiver Perspectives on the Experience of Pain

2013 ◽  
Vol 18 (6) ◽  
pp. 293-300 ◽  
Author(s):  
Christine J McPherson ◽  
Thomas Hadjistavropoulos ◽  
Michelle M Lobchuk ◽  
Kelly N Kilgour
Keyword(s):  
Older Adults ◽  
Palliative Care ◽  
Pain Management ◽  
Cancer Pain ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Older Patients ◽  
Main Category ◽  
Home Setting ◽  
Living With Cancer

BACKGROUND: Despite an emphasis on pain management in palliative care, pain continues to be a common problem for individuals with advanced cancer. Many of those affected are older due to the disproportionate incidence of cancer in this age group. There remains little understanding of how older patients and their family caregivers perceive patients’ cancer-related pain, despite its significance for pain management in the home setting.OBJECTIVES: To explore and describe the cancer pain perceptions and experiences of older adults with advanced cancer and their family caregivers.METHODS: A qualitative descriptive approach was used to describe and interpret data collected from semistructured interviews with 18 patients (≥65 years of age) with advanced cancer receiving palliative care at home and their family caregivers.RESULTS: The main category ‘Experiencing cancer pain’ incorporated three themes. The theme ‘Feeling cancer pain’ included the sensory aspects of the pain, its origin and meanings attributed to the pain. A second theme, ‘Reacting to cancer pain’, included patients’ and family caregivers’ behavioural, cognitive (ie, attitudes, beliefs and control) and emotional responses to the pain. A third theme, ‘Living with cancer pain’ incorporated individual and social-relational changes that resulted from living with cancer pain.CONCLUSIONS: The findings provide an awareness of cancer pain experienced by older patients and their family caregivers within the wider context of ongoing relationships, increased patient morbidity and other losses common in the aged.

Delirium in Advanced Cancer: A Psychoeducational Intervention for Family Caregivers

2002 ◽  
Vol 18 (4) ◽  
pp. 253-261 ◽  
Author(s):  
Pierre Gagnon ◽  
Cécile Charbonneau ◽  
Pierre Allard ◽  
Colette Soulard ◽  
Serge Dumont ◽  
...  
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Terminal Care ◽  
Brain Dysfunction ◽  
Psychoeducational Intervention ◽  
Specific Intervention ◽  
Terminally Ill Cancer Patients ◽  
The Family ◽  
Global Brain

Delirium, a global brain dysfunction, develops frequently in advanced cancer. It is a leading source of distress for family caregivers. Following recommendations from palliative care professionals and caregivers for terminally ill cancer patients, a psychoeducational intervention was implemented in a palliative care hospice to help family caregivers cope with delirium and, eventually, to contribute to early detection. Prior to receiving information on delirium, the majority of the family caregivers did not know what it was or that it could be treated. Few knew that patients in terminal care could become delirious. For caregivers, receiving the intervention increased their confidence they were making good decisions, and the majority felt that all family caregivers should be informed on the risk of delirium (p<0.009). A specific intervention on delirium, tailored to the needs of the family caregivers, seems beneficial for caregivers and for patients.

Benefits of immediate versus delayed palliative care to informal family caregivers of persons with advanced cancer: Outcomes from the ENABLE III randomized clinical trial.

2014 ◽  
Vol 32 (18_suppl) ◽  
pp. LBA9513-LBA9513 ◽  
Author(s):  
J Nicholas Dionne-Odom ◽  
Andres Azuero ◽  
Kathleen Lyons ◽  
Zhongze Li ◽  
Tor Tosteson ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Palliative Care ◽  
Randomized Clinical Trial ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Treatment Effects ◽  
Subjective Burden ◽  
Patient Death ◽  
Burden Scale ◽  
Cancer Experience

LBA9513 Background: Family caregivers of individuals with advanced cancer experience significant burden and diminished QOL; few interventions have been found to reduce these outcomes. Methods: Randomized clinical trial conducted from 10/11/2010 to 9/5/2013 of immediate versus delayed (initiated 12 weeks after randomization) entry patients (n=207) and caregivers (n=122) into ENABLE (Educate, Nurture, Advise, Before Life Ends), a phone-based concurrent oncology palliative care intervention. QOL (Caregiver Quality of Life-Cancer, lower scores=better QOL), depression (Center for Epidemiological Study-Depression) and burden (Montgomery Borgatta Caregiver Burden Scale; subjective burden [SB], objective burden [OB]; demand burden [DB]) measures were collected at baseline, 6, 12, 18, and 24 weeks, and every 12 weeks until patient death or study completion. Results: Estimated treatment effects (immediate minus delayed) for caregivers from randomization to 12 weeks were (mean [SE]): -3.1 [2.3] for QOL (P=.17), -4.1 [1.3] for depression (P=.003), -1.0 [0.4] for SB (P=.02), 0.3 [0.6] for OB (P=.60), and -0.5 [0.6] for DB (P=.39). Estimated treatment effects (immediate minus delayed) from intervention initiation to 12 weeks were (mean [SE]): -6.4 [3.4] for QOL (P=.06), -7.4 [2] for depression (P<.001), -1.0 [0.6] for SB (P=.08), -0.6 [0.7] for OB (P=.44), and -0.5 [0.8] for DB (P=.50). Estimated treatment effects (immediate minus delayed) measured backwards from the time of patient’s death were (mean [SE]): of -4.9 [2.6] for QOL (P=.07), -3.8 [1.5] for depression (P=.02), -1.1 [0.4] for SB (P=.01), -0.6 [0.6] for OB (P=.26), and -0.7 [0.6] for DB (P=.22). Conclusions: Caregivers in the immediate group had lower depression, SB, and trends towards better QOL in comparisons up to 12 weeks, following initiation of the intervention in both groups, and in the terminal decline analysis. These results suggest that concurrent oncology palliative care should be initiated as early as possible to maximize benefit to caregivers. Clinical trial information: NCT01245621.

Yoga program for patients with brain tumors undergoing radiotherapy (XRT) and their family caregivers.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 200-200 ◽  
Author(s):  
Kathrin Milbury ◽  
Smith Mallaiah ◽  
Anita Mahajan ◽  
Terri S. Armstrong ◽  
Shiao-Pei S. Weathers ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Sleep Disturbances ◽  
Pilot Trial ◽  
Well Being ◽  
Control Group ◽  
High Grade ◽  
Psychological Burden ◽  
Cancer Symptoms ◽  
Breathing Exercises ◽  
Sf 36

200 Background: The role of behavioral medicine in the symptom management of glioma patients is largely unknown. Moreover, although the literature revealed that family caregivers are at risk of physical and psychological burden, the needs of caregivers generally remain unaddressed. The purpose of this study was to establish feasibility and preliminary efficacy of a couple-based Yoga (CBY) intervention in glioma patients and their caregivers targeting QOL outcomes. Methods: This small, single-arm pilot trial included adults with low and high grade glioma undergoing XRT and their family caregivers. Dyads participated in a 12-session CBY program focusing on breathing exercises, gentle movements and guided meditations. We tracked feasibility data and assessed levels of cancer-related symptoms (MDASI), depressive symptoms (CES-D), fatigue (BFI), sleep disturbances (PSQI), spiritual well-being (FACT-SP) and overall mental and physical QOL (SF-36) at baseline and post-CBY, which was at the end of XRT. Participants also completed program evaluations. Results: We approached 7 dyads of which 5 (71%) consented. All participants completed all 12 sessions and pre/post assessments. All patients (mean age: 52 yrs., 80% female, 80% high grade) and caregivers (mean age: 58 yrs., 60% female, 60% spouses) indicated that they perceived benefit from the program. Paired t-tests revealed a marginally significant, yet clinically meaningful, decrease in patient’s cancer symptoms (t = 2.32, p = .08; MDASI mean; 32.06 vs.18.80). There were clinically significant reductions in patient sleep disturbances (PSQI mean: 10.75 vs. 8.00) and improvements in patient and caregiver mental QOL (MCS of SF-36 mean: 42.35 vs 52.34 and 45.14 vs 51.43, respectively). All other means were generally in the expected direction. Conclusions: This novel supportive care program appears to be safe, feasible, acceptable, and subjectively useful for glioma patients and their caregivers. Although the trial did not have a control group, it is notable that multiple symptom outcomes improved when they would normally have been expected to deteriorate over the course of XRT. We are currently conducting a randomized controlled trial to examine treatment efficacy. Clinical trial information: 2015-01124.

scholarly journals Predictors of the final place of care of patients with advanced cancer receiving integrated home-based palliative care: a retrospective cohort study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Ri Yin Tay ◽  
Rozenne W. K. Choo ◽  
Wah Ying Ong ◽  
Allyn Y. M. Hum
Keyword(s):  
Palliative Care ◽  
Cohort Study ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Terminal Care ◽  
Retrospective Cohort ◽  
Home Death ◽  
Factors Associated ◽  
Home Based ◽  
To Receive

Abstract Background Meeting patients’ preferences for place of care at the end-of-life is an indicator of quality palliative care. Understanding the key elements required for terminal care within an integrated model may inform policy and practice, and consequently increase the likelihood of meeting patients’ preferences. Hence, this study aimed to identify factors associated with the final place of care in patients with advanced cancer receiving integrated, home-based palliative care. Methods This retrospective cohort study included deceased adult patients with advanced cancer who were enrolled in the home-based palliative care service between January 2016 and December 2018. Patients with < 2 weeks’ enrollment in the home-based service, or ≤ 1-week duration at the final place of care, were excluded. The following information were retrieved from patients’ electronic medical records: patients’ and their families’ characteristics, care preferences, healthcare utilization, functional status (measured by the Palliative Performance Scale (PPSv2)), and symptom severity (measured by the Edmonton Symptom Assessment System). Multivariate logistic regression was employed to identify independent predictors of the final place of care. Kappa value was calculated to estimate the concordance between actual and preferred place of death. Results A total of 359 patients were included in the study. Home was the most common (58.2%) final place of care, followed by inpatient hospice (23.7%), and hospital (16.7%). Patients who were single or divorced (OR: 5.5; 95% CI: 1.1–27.8), or had older family caregivers (OR: 3.1; 95% CI: 1.1–8.8), PPSv2 score ≥ 40% (OR: 9.1; 95% CI: 3.3–24.8), pain score ≥ 2 (OR: 3.6; 95% CI: 1.3–9.8), and non-home death preference (OR: 23.8; 95% CI: 5.4–105.1), were more likely to receive terminal care in the inpatient hospice. Patients who were male (OR: 3.2; 95% CI: 1.0–9.9), or had PPSv2 score ≥ 40% (OR: 8.6; 95% CI: 2.9–26.0), pain score ≥ 2 (OR: 3.5; 95% CI: 1.2–10.3), and non-home death preference (OR: 9.8; 95% CI: 2.1–46.3), were more likely to be hospitalized. Goal-concordance was fair (72.6%, kappa = 0.39). Conclusions Higher functional status, greater pain intensity, and non-home death preference predicted institutionalization as the final place of care. Additionally, single or divorced patients with older family caregivers were more likely to receive terminal care in the inpatient hospice, while males were more likely to be hospitalized. Despite being part of an integrated care model, goal-concordance was sub-optimal. More comprehensive community networks and resources, enhanced pain control, and personalized care planning discussions, are recommended to better meet patients’ preferences for their final place of care. Future research could similarly examine factors associated with the final place of care in patients with advanced non-cancer conditions.

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