Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress
Clinical Collections
Advances in Alzheimer’s

Keynote webinar | Spotlight on medication adherence

LIVE: Thursday 27th June 2024, 18:00-19:30 (CEST)
Join our expert panel to discover why you need to understand the drivers of non-adherence in your patients, and how you can optimize medication adherence in your clinics to drastically improve patient outcomes.
ADVANCED SEARCH
Log in
Top
Supportive Care in Cancer
Published in: Supportive Care in Cancer 12/2021

Open Access 01-12-2021 | Care | Original Article

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

Authors: Janneke van Roij, Linda Brom, Dirkje Sommeijer, Lonneke van de Poll-Franse, Natasja Raijmakers, on behalf of the eQuiPe study group

Published in: Supportive Care in Cancer | Issue 12/2021

Login to get access

Abstract

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)
Literature
1.
Pasacreta JV, McCorkle R (2000) Cancer care: impact of interventions on caregiver outcomes. Annu Rev Nurs Res 18:127–148PubMedCrossRef
2.
3.
Trevino KM, Prigerson HG, Maciejewski PK (2018) Advanced cancer caregiving as a risk for major depressive episodes and generalized anxiety disorder. Psychooncology 27(1):243–249PubMedCrossRef
4.
Dionne-Odom JN, Demark-Wahnefried W, Taylor RA, Rocque GB, Azuero A, Acemgil A et al (2017) The self-care practices of family caregivers of persons with poor prognosis cancer: differences by varying levels of caregiver well-being and preparedness. Support Care Cancer 25(8):2437–2444PubMedPubMedCentralCrossRef
5.
Ge L, Mordiffi SZ (2017) Factors associated with higher caregiver burden among family caregivers of elderly cancer patients: a systematic review. Cancer Nurs 40(6):471–478PubMedCrossRef
6.
Wadhwa D, Burman D, Swami N, Rodin G, Lo C, Zimmermann C (2013) Quality of life and mental health in caregivers of outpatients with advanced cancer. Psychooncology 22(2):403–410PubMedCrossRef
7.
Nipp RD, El-Jawahri A, Fishbein JN, Gallagher ER, Stagl JM, Park ER et al (2016) Factors associated with depression and anxiety symptoms in family caregivers of patients with incurable cancer. Ann Oncol 27(8):1607–1612PubMedPubMedCentralCrossRef
8.
Ito E, Tadaka E (2017) Quality of life among the family caregivers of patients with terminal cancer at home in Japan. Jpn J Nurs Sci 14(4):341–352PubMedCrossRef
9.
Goldstein NE, Concato J, Fried TR, Kasl SV, Johnson-Hurzeler R, Bradley EH (2004) Factors associated with caregiver burden among caregivers of terminally ill patients with cancer. J Palliat Care 20(1):38–43PubMedCrossRef
10.
Ugalde A, Krishnasamy M, Schofield P (2012) Role recognition and changes to self-identity in family caregivers of people with advanced cancer: a qualitative study. Support Care Cancer 20(6):1175–1181PubMedCrossRef
11.
van Roij J, Brom L, Youssef-El Soud M, van de Poll-Franse L, Raijmakers NJH (2019) Social consequences of advanced cancer in patients and their informal caregivers: a qualitative study. Support Care Cancer 27(4):1187–1195PubMedCrossRef
12.
Given CW, Given B, Azzouz F, Kozachik S, Stommel M (2001) Predictors of pain and fatigue in the year following diagnosis among elderly cancer patients. J Pain Symptom Manage 21(6):456–466PubMedCrossRef
13.
Pool G, Heuvel F, Ranchor AV, Sanderman R (2004) Handboek psychologische interventies bij chronischsomatische aandoeningen. Assen: Koninklijke Van Gorcum BV
14.
Semere W, Althouse AD, Rosland AM, White D, Arnold R, Chu E, et al (2021) Poor patient health is associated with higher caregiver burden for older adults with advanced cancer. J Geriatr Oncol
15.
16.
Hwang IC, Kim YS, Lee YJ, Choi YS, Hwang SW, Kim HM et al (2018) Factors associated with caregivers’ resilience in a terminal cancer care setting. Am J Hosp Palliat Care 35(4):677–683PubMedCrossRef
17.
Karabekiroglu A, Demir EY, Aker S, Kocamanoglu B, Karabulut GS (2018) Predictors of depression and anxiety among caregivers of hospitalised advanced cancer patients. Singapore Med J 59(11):572–577PubMedPubMedCentralCrossRef
18.
Palacio C, Krikorian A, Limonero JT (2018) The influence of psychological factors on the burden of caregivers of patients with advanced cancer: resiliency and caregiver burden. Palliat Support Care 16(3):269–277PubMedCrossRef
19.
Lee JJ, Miller SE (2013) A self-care framework for social workers: building a strong foundation for practice. Fam Soc 94(2):96–103CrossRef
20.
van de Poll-Franse LV, Horevoorts N, van Eenbergen M, Denollet J, Roukema JA, Aaronson NK et al (2011) The Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship registry: scope, rationale and design of an infrastructure for the study of physical and psychosocial outcomes in cancer survivorship cohorts. Eur J Cancer 47(14):2188–2194PubMedCrossRef
21.
van Roij J, Zijlstra M, Ham L, Brom L, Fransen H, Vreugdenhil A et al (2020) Prospective cohort study of patients with advanced cancer and their relatives on the experienced quality of care and life (eQuiPe study): a study protocol. BMC Palliat Care 19(1):139PubMedPubMedCentralCrossRef
22.
Bedard M, Molloy DW, Squire L, Dubois S, Lever JA, O’Donnell M (2001) The Zarit Burden Interview: a new short version and screening version. Gerontologist 41(5):652–657PubMedCrossRef
23.
Chattat R, Cortesi V, Izzicupo F, Del Re ML, Sgarbi C, Fabbo A et al (2011) The Italian version of the Zarit Burden interview: a validation study. Int Psychogeriatr 23(5):797–805PubMedCrossRef
24.
Higginson IJ, Gao W, Jackson D, Murray J, Harding R (2010) Short-form Zarit Caregiver Burden Interviews were valid in advanced conditions. J Clin Epidemiol 63(5):535–542PubMedCrossRef
25.
Lee JJ, Bride B, & Miller SE (2016) Development and initial validation of the self-care practices scale (SCPS). Poster session presented at the meeting of the Society for Social Work and Research, Washington, DC
26.
Dorociak KE, Rupert PA, Bryant FB, Zahniser E (2017) Development of the Professional Self-Care Scale. J Couns Psychol 64(3):325–334PubMedCrossRef
27.
Connor KM, Davidson JR (2003) Development of a new resilience scale: the Connor-Davidson Resilience Scale (CD-RISC). Depress Anxiety 18(2):76–82PubMedCrossRef
28.
Vaishnavi S, Connor K, Davidson JR (2007) An abbreviated version of the Connor-Davidson Resilience Scale (CD-RISC), the CD-RISC2: psychometric properties and applications in psychopharmacological trials. Psychiatry Res 152(2–3):293–297PubMedPubMedCentralCrossRef
29.
30.
Sangha O, Stucki G, Liang MH, Fossel AH, Katz JN (2003) The Self-Administered Comorbidity Questionnaire: a new method to assess comorbidity for clinical and health services research. Arthritis Rheum 49(2):156–163PubMedCrossRef
31.
Romito F, Goldzweig G, Cormio C, Hagedoorn M, Andersen BL (2013) Informal caregiving for cancer patients. Cancer 119(Suppl 11):2160–2169PubMedCrossRef
32.
Langenberg S, van Herpen CML, van Opstal CCM, Wymenga ANM, van der Graaf WTA, Prins JB (2019) Caregivers’ burden and fatigue during and after patients’ treatment with concomitant chemoradiotherapy for locally advanced head and neck cancer: a prospective, observational pilot study. Support Care Cancer 27(11):4145–4154PubMedPubMedCentralCrossRef
33.
Papastavrou E, Charalambous A, Tsangari H (2009) Exploring the other side of cancer care: the informal caregiver. Eur J Oncol Nurs 13(2):128–136PubMedCrossRef
34.
Harding R, Gao W, Jackson D, Pearson C, Murray J, Higginson IJ (2015) Comparative analysis of informal caregiver burden in advanced cancer, dementia, and acquired brain injury. J Pain Symptom Manage 50(4):445–452PubMedCrossRef
35.
Chindaprasirt J, Limpawattana P, Pakkaratho P, Wirasorn K, Sookprasert A, Kongbunkiat K et al (2014) Burdens among caregivers of older adults with advanced cancer and risk factors. Asian Pac J Cancer Prev 15(4):1643–1648PubMedCrossRef
36.
Higginson IJ, Gao W (2008) Caregiver assessment of patients with advanced cancer: concordance with patients, effect of burden and positivity. Health Qual Life Outcomes 6:42PubMedPubMedCentralCrossRef
37.
Naoki Y, Matsuda Y, Maeda I, Kamino H, Kozaki Y, Tokoro A et al (2018) Association between family satisfaction and caregiver burden in cancer patients receiving outreach palliative care at home. Palliat Support Care 16(3):260–268PubMedCrossRef
38.
Stenberg U, Ruland CM, Miaskowski C (2010) Review of the literature on the effects of caring for a patient with cancer. Psychooncology 19(10):1013–1025PubMedCrossRef
39.
Williams LA (2007) Whatever it takes: informal caregiving dynamics in blood and marrow transplantation. Oncol Nurs Forum 34(2):379–387PubMedCrossRef
40.
41.
Duimering A, Turner J, Chu K, Huang F, Severin D, Ghosh S et al (2020) Informal caregiver quality of life in a palliative oncology population. Support Care Cancer 28(4):1695–1702PubMedCrossRef
42.
McDonald J, Swami N, Hannon B, Lo C, Pope A, Oza A et al (2017) Impact of early palliative care on caregivers of patients with advanced cancer: cluster randomised trial. Ann Oncol 28(1):163–168PubMedCrossRef
43.
Dionne-Odom JN, Azuero A, Lyons KD, Hull JG, Tosteson T, Li Z et al (2015) Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: outcomes from the ENABLE III Randomized Controlled Trial. J Clin Oncol 33(13):1446–1452PubMedPubMedCentralCrossRef
44.
Wang T, Molassiotis A, Chung BPM, Tan JY (2018) Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review. BMC Palliat Care 17(1):96PubMedPubMedCentralCrossRef
45.
Nissim R, Hales S, Zimmermann C, Deckert A, Edwards B, Rodin G (2017) Supporting family caregivers of advanced cancer patients: a focus group study. Family Relations 66(5)
46.
Roen I, Stifoss-Hanssen H, Grande G, Brenne AT, Kaasa S, Sand K et al (2018) Resilience for family carers of advanced cancer patients-how can health care providers contribute? A qualitative interview study with carers. Palliat Med 32(8):1410–1418PubMedCrossRef
47.
Christensen KA, Stephens MA, Townsend AL (1998) Mastery in women’s multiple roles and well-being: adult daughters providing care to impaired parents. Health Psychol 17(2):163–171PubMedCrossRef
48.
Nijboer C, Tempelaar R, Triemstra M, van den Bos GA, Sanderman R (2001) The role of social and psychologic resources in caregiving of cancer patients. Cancer 91(5):1029–1039PubMedCrossRef
49.
Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS (2014) Caregiver burden: a clinical review. JAMA 311(10):1052–1060PubMedCrossRef
50.
Kim Y, Baker F, Spillers RL (2007) Cancer caregivers’ quality of life: effects of gender, relationship, and appraisal. J Pain Symptom Manage 34(3):294–304PubMedCrossRef
51.
52.
Williamson GM, Shaffer DR, Schulz R (1998) Activity restriction and prior relationship history as contributors to mental health outcomes among middle-aged and older spousal caregivers. Health Psychol 17(2):152–162PubMedCrossRef
53.
Wood R, Taylor-Stokes G, Smith F, Chaib C (2019) The humanistic burden of advanced non-small cell lung cancer (NSCLC) in Europe: a real-world survey linking patient clinical factors to patient and caregiver burden. Qual Life Res 28(7):1849–1861PubMedPubMedCentralCrossRef
Metadata
Title
Self-care, resilience, and caregiver burden in relatives of patients with advanced cancer: results from the eQuiPe study
Authors
Janneke van Roij
Linda Brom
Dirkje Sommeijer
Lonneke van de Poll-Franse
Natasja Raijmakers
on behalf of the eQuiPe study group
Publication date
01-12-2021
Publisher
Springer Berlin Heidelberg
Keyword
Care
Published in
Supportive Care in Cancer / Issue 12/2021
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-021-06365-9

Other articles of this Issue 12/2021

Supportive Care in Cancer 12/2021 Go to the issue

Special Article

MASCC antiemetics in advanced cancer updated guideline

Original Article

Psychological distress and lower health-related quality of life are associated with need for dietary support among colorectal cancer survivors with overweight or obesity

Original Article

Lessons learned about virtual cancer care and distress screening in the time of COVID-19

Original Article

Chemotherapy education: current practices of oncology nurses counseling patients

Original Article

Antimicrobial prophylaxis and post-chemotherapy neutropenic fever in patients with leukemia: comparisons of C-reactive protein, procalcitonin and immediate fever outcome measures between those with and without prophylaxis, and the implications for practice

Original Article

Knowledge and attitudes of Italian medical oncologists and palliative care physicians toward medical use of cannabis in cancer care: a national survey
Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Watch now

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras
Prof. Fabrice Barlesi
Developed by: Springer Medicine
Image Credits