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

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)

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Bereaved relatives’ quality of life before and during the COVID-19 pandemic: Results of the prospective, multicenter, observational eQuiPe study

Palliative Medicine ◽

10.1177/02692163211034120 ◽

2021 ◽

pp. 026921632110341

Author(s):

Laurien Ham ◽

Heidi P Fransen ◽

Ben van den Borne ◽

Mathijs P Hendriks ◽

Hanneke WM van Laarhoven ◽

...

Keyword(s):

Quality Of Life ◽

Social Support ◽

Advanced Cancer ◽

Stressful Life Events ◽

Self Care ◽

Cross Sectional ◽

Multicenter Observational Study ◽

Prospective Longitudinal ◽

The Impact

Background: The death of a loved one is considered as one of the most stressful life events. During the COVID-19 pandemic, grief processes are potentially affected by measures such as social distancing and self-quarantine. Aim: The aim of this study was to give insight in the impact of the COVID-19 pandemic on quality of life, social support, and self-care of bereaved relatives of people with advanced cancer in order to evaluate whether care for bereaved relatives during the COVID-19 pandemic should be improved. Design: A cross-sectional analysis using data from bereaved relatives of a prospective, longitudinal, multicenter, observational study on quality of care and quality of life of people with advanced cancer and their (bereaved) relatives (eQuiPe). Setting/participants: Quality of life, social support, and self-care of bereaved relatives who completed a questionnaire within 3–6 months after their relative died during COVID-19 (April-November 2020) were compared with bereaved relatives who completed this questionnaire pre-COVID-19 (April-November 2019). Results: Ninety-one bereaved relatives were included in the analysis, 44 bereaved relatives completed the questionnaire pre-COVID-19 and 47 during COVID-19. The median age of the participants was 65 (IQR = 14) years and 58% were female. There were no significant differences between the pre-COVID-19 and during COVID-19 bereaved relatives in quality of life (68 vs 69), social support (17 vs 18), and self-care (20 vs 19). Conclusions: On the short-term, the COVID-19 pandemic did not have significant impact on bereaved relatives’ wellbeing. However, long-term impact of the pandemic on their wellbeing should be assessed.

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Comparative Analysis of Informal Caregiver Burden in Advanced Cancer, Dementia, and Acquired Brain Injury

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2015.04.005 ◽

2015 ◽

Vol 50 (4) ◽

pp. 445-452 ◽

Cited By ~ 40

Author(s):

Richard Harding ◽

Wei Gao ◽

Diana Jackson ◽

Clare Pearson ◽

Joanna Murray ◽

...

Keyword(s):

Comparative Analysis ◽

Brain Injury ◽

Advanced Cancer ◽

Caregiver Burden ◽

Informal Caregiver ◽

Acquired Brain Injury

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Preliminary study of themes of meaning and psychosocial service use among informal cancer caregivers

Palliative & Supportive Care ◽

10.1017/s1478951513000084 ◽

2013 ◽

Vol 12 (2) ◽

pp. 139-148 ◽

Cited By ~ 26

Author(s):

Allison J. Applebaum ◽

Carol J. Farran ◽

Allison M. Marziliano ◽

Anna R. Pasternak ◽

William Breitbart

Keyword(s):

Advanced Cancer ◽

Caregiver Burden ◽

Terminal Illness ◽

Service Use ◽

Self Care ◽

Psychosocial Interventions ◽

Anxiety And Depression ◽

Loved One ◽

Psychosocial Service ◽

Existential Concerns

AbstractObjective:The burden experienced by informal caregivers (ICs) of patients with advanced cancer is well documented. ICs are at risk for anxiety and depression, as well as existential concerns that arise when a loved one is facing a terminal illness. Few psychosocial interventions focus on existential concerns of ICs. However, a growing body of literature indicates that finding meaning in the experience of being an IC for a person with cancer has the potential to buffer against burden. The purpose of this study was to collect preliminary descriptive data regarding caregiver burden, meaning, and psychosocial service use to inform the adaptation of a meaning-centered intervention for ICs.Method:Twenty-five caregivers and 32 patients completed brief, anonymous questionnaires that asked about their role as a caregiver or their perception of their loved one as a caregiver, caregiver burden, and psychosocial service use.Results:Caregivers and patients identified anxiety and depression as top correlates of burden experienced by caregivers, whereas guilt, issues with role/sense of identity, and self-care were additional areas of concern. The majority of caregivers were not receiving psychosocial services, although they almost unanimously reported desiring services. A greater proportion of patients than caregivers believed that an intervention designed to enhance meaning would ameliorate burden, but, nevertheless, close to three quarters of caregivers reported interest in participating in such an intervention.Significance of results:These study findings provide further support for, at a minimum, engaging ICs of persons with advanced cancer in interventions that address existential issues, mental health, self-care, and service use. Such interventions are likely to improve the quality of life of both patients with cancer and their ICs.

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The Effect of Progressive Relaxation Exercise on Caregiver Burden, Fatigue and Quality of Life in Caregivers of Patients With Advanced Cancer: Randomized Controlled Clinical Study

Case Medical Research ◽

10.31525/ct1-nct04292678 ◽

2020 ◽

Author(s):

Keyword(s):

Quality Of Life ◽

Clinical Study ◽

Advanced Cancer ◽

Caregiver Burden ◽

Progressive Relaxation ◽

Randomized Controlled ◽

Relaxation Exercise ◽

Controlled Clinical Study

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SYMPERHEART: an intervention to support symptom perception in persons with heart failure and their informal caregiver: a feasibility quasi-experimental study protocol

BMJ Open ◽

10.1136/bmjopen-2021-052208 ◽

2021 ◽

Vol 11 (7) ◽

pp. e052208

Author(s):

Gabrielle Cécile Santos ◽

Maria Liljeroos ◽

Roger Hullin ◽

Kris Denhaerynck ◽

Justine Wicht ◽

...

Keyword(s):

Heart Failure ◽

Clinical Outcomes ◽

Informal Caregiver ◽

Informal Caregivers ◽

Self Care ◽

Symptom Perception ◽

Convenience Sample ◽

Failure Index ◽

Patient Reported ◽

Quasi Experimental

IntroductionSymptom perception in heart failure (HF) has been identified as crucial for effective self-care, and is related to patient and health system outcomes. There is uncertainty regarding the feasibility and acceptability of symptom perception support and doubts regarding how to include informal caregivers. This study aims to test the feasibility, acceptability and outcome responsiveness of an intervention supporting symptom perception in persons with HF and their informal caregiver.Methods and analysisA feasibility study with a quasi-experimental pretest and post-test single group design is conducted. The convenience sample consists of 30 persons with HF, their informal caregivers and six nurses. SYMPERHEART is an evidence-informed intervention that targets symptom perception by educational and support components. Feasibility is measured by time-to-recruit; time-to-deliver; eligibility rate; intervention delivery fidelity rate. Acceptability is measured by rate of consent, retention rate, treatment acceptability and the engagement in the intervention components. Outcome responsiveness includes: HF self-care (via the Self-care of Heart Failure Index V.7.2); perception of HF symptom burden (via the Heart Failure Somatic Perception Scale V.3); health status (via the Kansas City Cardiomyopathy Questionnaire-12); caregivers’ contribution to HF self-care (via the Caregiver Contribution to Self-Care of Heart Failure Index 2); caregivers’ burden (via the Zarit Burden Interview). Clinical outcomes include HF events, hospitalisation reason and length of hospital stay. Descriptive statistics will be used to report feasibility, acceptability, patient-reported outcomes (PRO) and clinical outcomes. PRO and caregiver-reported outcome responsiveness will be reported with mean absolute change and effect sizes.Ethics and disseminationThe study is conducted according to the Declaration of Helsinki. The Human Research Ethics Committee of the Canton of Vaud, Switzerland, has approved the study. Written informed consent from persons with HF and informal caregivers are obtained. Results will be published via peer reviewed and professional journals, and further disseminated via congresses.Trial registration numberISRCTN18151041.

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Perceptions of involvement in advance care planning and emotional functioning in patients with advanced cancer

Journal of Cancer Survivorship ◽

10.1007/s11764-021-01020-y ◽

2021 ◽

Author(s):

Lente L. Kroon ◽

◽

Janneke van Roij ◽

Ida J. Korfage ◽

An K. L. Reyners ◽

...

Keyword(s):

Quality Of Care ◽

Medical Treatment ◽

Advanced Cancer ◽

Advance Care Planning ◽

Emotional Functioning ◽

Solid Cancer ◽

Care Planning ◽

Advance Care ◽

Prospective Longitudinal

Abstract Purpose Advance Care Planning (ACP) is positively associated with the quality of care, but its impact on emotional functioning is ambiguous. This study investigated the association between perceptions of ACP involvement and emotional functioning in patients with advanced cancer. Methods This study analyzed baseline data of 1,001 patients of the eQuiPe study, a prospective, longitudinal, multicenter, observational study on quality of care and quality of life in patients with advanced cancer in the Netherlands. Patients with metastatic solid cancer were asked to participate between November 2017 and January 2020. Patients’ perceptions of ACP involvement were measured by three self-administered statements. Emotional functioning was measured by the EORTC-QLQ-C30. A linear multivariable regression analysis was performed while taking gender, age, migrant background, education, marital status, and symptom burden into account. Results The majority of patients (87%) reported that they were as much involved as they wanted to be in decisions about their future medical treatment and care. Most patients felt that their relatives (81%) and physicians (75%) were familiar with their preferences for future medical treatment and care. A positive association was found between patients’ perceptions of ACP involvement and their emotional functioning (b=0.162, p<0.001, 95%CI[0.095;0.229]) while controlling for relevant confounders. Conclusions Perceptions of involvement in ACP are positively associated with emotional functioning in patients with advanced cancer. Future studies are needed to further investigate the effect of ACP on emotional functioning. Trial registration number NTR6584 Date of registration: 30 June 2017 Implications for Cancer Survivors Patients’ emotional functioning might improve from routine discussions regarding goals of future care. Therefore, integration of ACP into palliative might be promising.

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