Supporting family caregivers: Needs beyond direct caregiving.

2019 ◽  
Vol 37 (31_suppl) ◽  
pp. 16-16
Author(s):  
Diane E. Holland ◽  
Catherine E. Vanderboom ◽  
Joan M. Griffin ◽  
Ann Marie Dose ◽  
Ellen M. Wild ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Palliative Care ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Preliminary Data ◽  
Self Care ◽  
Caregiver Support ◽  
Medical Needs ◽  
Rural Family ◽  
Caregiver Needs

16 Background: Family caregivers have been shown to have their own unique challenges when caring for someone with advanced cancer. These challenges may be more pronounced among rural caregivers. We present early lessons regarding caregiver needs from an intervention study that provides teaching, guidance, and counseling to rural family caregivers of individuals who received palliative care in the hospital and transitioned home. Methods: A randomized clinical trial is underway to test the efficacy of a care model that focuses on supporting rural family caregivers’ medical needs, self-care, and direct caregiving needs. We have developed a nurse-led, technology-enhanced intervention for family caregivers delivered over 8 weeks after hospital discharge of those receiving palliative care consults. The intervention includes video and phone visits between a palliative care nurse and caregiver. Caregiver needs and nurse strategies are documented using a standardized terminology in an electronic datafile. Results: Preliminary data from 21 family caregivers of individuals with advanced cancer who completed the intervention to date indicate caregivers personally had an average of 2.2 chronic conditions (up to 10) and were taking an average of 3.14 (up to 11) medications. In addition to challenges providing direct care, caregivers reported difficulty managing stress or depression (7/21; 33.3%); issues related to grief (6/21; 28.5%); inadequate sleep and rest (6/21; 28.5%), low or no income or uninsured medical expenses (5/21; 23.8%); and interpersonal challenges within families and with friends (5/21, 23.8%). Conclusions: Preliminary data from our study suggest that assessing the caregiver’s individual needs related to well being and self-care as well as direct caregiving is imperative to delivering caregiver support services that can improve the ability of family caregivers to provide care for their loved ones with advanced cancer. Clinical trial information: NCT03339271.

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.

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.

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 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.

scholarly journals Randomised clinical trial of early specialist palliative care plus standard care versus standard care alone in patients with advanced cancer: The Danish Palliative Care Trial

2017 ◽  
Vol 31 (9) ◽  
pp. 814-824 ◽  
Author(s):  
Mogens Groenvold ◽  
Morten Aagaard Petersen ◽  
Anette Damkier ◽  
Mette Asbjoern Neergaard ◽  
Jan Bjoern Nielsen ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Palliative Care ◽  
Advanced Cancer ◽  
Standard Care ◽  
Primary Outcome ◽  
Randomised Clinical Trial ◽  
Sensitivity Analyses ◽  
Specialist Palliative Care ◽  
Beneficial Effects ◽  
Secondary Outcomes

Background: Beneficial effects of early palliative care have been found in advanced cancer, but the evidence is not unequivocal. Aim: To investigate the effect of early specialist palliative care among advanced cancer patients identified in oncology departments. Setting/participants: The Danish Palliative Care Trial (DanPaCT) (ClinicalTrials.gov NCT01348048) is a multicentre randomised clinical trial comparing early referral to a specialist palliative care team plus standard care versus standard care alone. The planned sample size was 300. At five oncology departments, consecutive patients with advanced cancer were screened for palliative needs. Patients with scores exceeding a predefined threshold for problems with physical, emotional or role function, or nausea/vomiting, pain, dyspnoea or lack of appetite according to the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) were eligible. The primary outcome was the change in each patient’s primary need (the most severe of the seven QLQ-C30 scales) at 3- and 8-week follow-up (0–100 scale). Five sensitivity analyses were conducted. Secondary outcomes were change in the seven QLQ-C30 scales and survival. Results: Totally 145 patients were randomised to early specialist palliative care versus 152 to standard care. Early specialist palliative care showed no effect on the primary outcome of change in primary need (−4.9 points (95% confidence interval −11.3 to +1.5 points); p = 0.14). The sensitivity analyses showed similar results. Analyses of the secondary outcomes, including survival, also showed no differences, maybe with the exception of nausea/vomiting where early specialist palliative care might have had a beneficial effect. Conclusion: We did not observe beneficial or harmful effects of early specialist palliative care, but important beneficial effects cannot be excluded.

Sign in / Sign up

Export Citation Format

Share Document