Impact of caregiver activities and social supports on multidimensional caregiver burden: analyses from nationally-representative surveys of cancer patients and their caregivers

Halpern, Michael T.; Fiero, Mallorie H.; Bell, Melanie L.

doi:10.1007/s11136-017-1505-9

Cited by 47 publications

(48 citation statements)

References 16 publications

(26 reference statements)

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“…Regarding the year of publication, 36 out of 62 articles were published in 2017 and 28 in 2018. Countries where the respective studies were conducted were the USA/Canada ( n = 23) [9,10,11,12,13,14,15,16,17,18,19,20,21,22,23,24,25,26,27,28,29,30,31], Scandinavia ( n = 7) [32,33,34,35,36,37,38], UK ( n = 4) [39,40,41,42], Germany ( n = 4) [43,44,45,46], Southern Europe (Italy, Portugal, Spain; n = 8) [47,48,49,50,51,52,53,54], East Asia (Japan, China, Korea, Taiwan; n = 4) [55,56,57,58,59,60], Australia/New Zealand ( n = 4) [61,62,63,64], other ( n = 4) [65,66,67,68], and multinational ( n = 2) [69,70].…”

Section: Resultsmentioning

confidence: 99%

“…Forty-seven studies reported on relatives of advanced cancer patient’s [9,10,11,13,15,16,17,18,19,20,21,22,23,24,26,27,28,29,30,31,32,34,36,37,38,39,42,43,44,46,47,48,49,50,51,52,53,55,56,57,58,59,60,61,65,66,67] and 15 studies included relatives of mixed patient samples [12,14,25,33,35,40,41,45,54,62,63,64,68,69,70]. The environment in which the patient received palliative or hospice care were home care in 18 studies [10,14,25,26,27,30,3...…”

Section: Resultsmentioning

confidence: 99%

See 1 more Smart Citation

Current Advances in Palliative & Hospice Care: Problems and Needs of Relatives and Family Caregivers During Palliative and Hospice Care—An Overview of Current Literature

Oechsle

2019

Medical Sciences

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Palliative and hospice care aims to improve quality of life of patients’ relatives, but still little is known about their specific problems and needs. We present a comprehensive literature update. Narrative review to present an expert overview of peer-reviewed, English-written original research publications and reviews on psychosocial and existential problems, supportive needs as well as interventions for relatives during the patients’ disease trajectory published between January 2017 and November 2018. A total of 64 publications were included. Relatives report high rates of psychological and existential distress, burden and psychological morbidity during the total disease trajectory of the patient. In addition, relatives report an alarmingly high number of unmet needs with information being the central issue. Relatives’ problems and needs are part of complex systems influenced by various socio-demographic factors and patient–relatives-interactions and dependency between different psychological phenomena. First support interventions for relatives during disease trajectory have proven feasible and secondary data from randomized studies suggest beneficial effects of providing early palliative care also for relatives. Relatives should be addressed to a still larger extent in the daily practice of palliative and hospice care, thus further research to reveal more detailed systematic information is needed to improve relatives’ psychological burden and quality of life.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Current Advances in Palliative & Hospice Care: Problems and Needs of Relatives and Family Caregivers During Palliative and Hospice Care—An Overview of Current Literature

Oechsle

2019

Medical Sciences

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“…There has been an increase in the development of services for caregivers, [ 30 , 31 ] now there is need for robust measures to quantify the effectiveness of any such intervention. The CRRS and its subscale scores may provide useful indications as to how different domains are impacted for different individuals, allowing for a more tailored approach to supportive interventions [ 32 ]. This initial validation suggests that the CRRS shows promise.…”

Section: Discussionmentioning

confidence: 99%

Development and validation of the caregiver roles and responsibilities scale in cancer caregivers

et al. 2019

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Purpose The caregiver roles and responsibilities scale (CRRS) was developed to facilitate formal assessment of broad life impacts for informal (i.e. unpaid) caregivers to people with cancer. Here we report the development and initial validation. Methods The CRRS was developed from the thematic analysis of two interview studies with cancer patients (stage III-IV breast, gynaecological, lung or melanoma) and caregivers. In the evaluation studies, participants completed the CRRS alongside the Caregiver Quality of Life—Cancer, the main criterion measure for concurrent validity, and the WHOQOL-BREF for additional convergent validity data. Questionnaires were completed at baseline, 7-days and 2-months. Demographic data and patient characteristics were collected at baseline. Results Two-hundred and forty-five caregivers to people with stage I-IV breast, colorectal, gynaecological, head and neck, lung or renal cancer or melanoma completed the CRRS at least once. The final 41 core items selected comprised five subscales: Support and Impact, Lifestyle, Emotional Health and Wellbeing, Self-care and Financial Wellbeing as well as three standalone items. Missing data rate was low (0.6%); there were no ceiling or floor effects for total scores. Cronbach’s alpha was 0.92 for the CRRS-41; 0.75–0.87 for the subscales. CRRS showed good test–retest reliability (ICC = 0.91), sensitivity to change and the predicted pattern of correlation with validation measures r = 0.75–0.89. The standalone 7-item jobs and careers subscale requires further validation. Conclusions Initial evaluation shows the CRRS has good validity and reliability and is a promising tool for the assessment of the effects of cancer and cancer treatment on the lives and wellbeing of informal caregivers. Electronic supplementary material The online version of this article (10.1007/s11136-019-02154-4) contains supplementary material, which is available to authorized users.

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“…Social isolation and low appraisal of caregiving, along with depression, financial stress, and lack of choice in being a caregiver, are important risk factors of caregiver strain, affecting their perception of burden [ 87 , 88 ]. Therefore, understanding the impact of caregiving and developing tailored interventions to provide assistance to caregivers can satisfy important unmet needs and reduce caregivers’ psychological and emotional burden [ 89 ].…”

Section: Discussionmentioning

confidence: 99%

Telemedicine Use Among Caregivers of Cancer Patients: Systematic Review

Marzorati¹,

Renzi²,

Russell-Edu³

et al. 2018

J Med Internet Res

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BackgroundThe number of published studies and systematic reviews examining different telehealth interventions targeting patients and their effects on patients’ well-being and quality of life have grown in recent decades. However, the use of telemedicine tools aimed at the family members and caregivers of adult cancer patients is less defined.ObjectiveWe aimed to conduct a systematic review to provide a more complete picture regarding telemedicine tools for informal caregivers (usually family members or close friends) implemented in all phases of cancer care. More specifically, the review aimed to better describe the study samples’ characteristics, to analyze measured outcomes and the specific questionnaires used to assess them, and to describe in depth the implemented interventions and their formats. Finally, we examined the role of telehealth, and usability and feasibility trends in supporting patients’ caregivers.MethodsWe systematically searched the literature in the following databases: Web of Science, Cochrane Library, PubMed, Scopus, CINAHL, MEDLINE, EMBASE, Google Scholar, and PsycINFO. Inclusion criteria were being written in English, published in peer-reviewed journals, describing a telehealth-implemented intervention, and focusing on caregivers of adult cancer patients at any stage of the disease. We selected studies published up to November 2017. We critically appraised included articles using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses and graded the quality of evidence by outcome using the Centre for Evidence-Based Medicine framework.ResultsWe included 24 studies in the final selection. In 21 of the 24 studies, the patient-caregiver dyad was analyzed, and the study population dealt with different types of cancer at different stages. Included studies considered the caregiver’s condition from both an individual and a relational point of view. Along with psychosocial variables, some studies monitored engagement and user satisfaction regarding Web-based platforms or telehealth interventions. All studies reported significant improvements in some of the investigated areas, but they often showed small effect sizes. Two types of telehealth intervention formats were used: Web-based platforms and telephone calls. Some of the included studies referred to the same project, but on study samples with different cancer diagnoses or with new versions of previously developed interventions.ConclusionsReported outcomes seem to suggest that we are in an exploratory phase. More detailed and targeted research hypotheses are still needed. Clarifying caregivers’ needs related to telehealth tools and better defining outcome measures may yield more significant results.

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Impact of caregiver activities and social supports on multidimensional caregiver burden: analyses from nationally-representative surveys of cancer patients and their caregivers

Cited by 47 publications

References 16 publications

Current Advances in Palliative & Hospice Care: Problems and Needs of Relatives and Family Caregivers During Palliative and Hospice Care—An Overview of Current Literature

Current Advances in Palliative & Hospice Care: Problems and Needs of Relatives and Family Caregivers During Palliative and Hospice Care—An Overview of Current Literature

Development and validation of the caregiver roles and responsibilities scale in cancer caregivers

Telemedicine Use Among Caregivers of Cancer Patients: Systematic Review

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