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. 2023 Nov 14;41(10):1184–1194. doi: 10.1177/10499091231215808

Nursing Support for Caregiver Burden in Family Caregivers of Patients With Cancer: A Scoping Review

Kohei Kajiwara 1,✉, Masamitsu Kobayashi 2, Miharu Morikawa 3, Yusuke Kanno 4, Kimiko Nakano 5, Yoshinobu Matsuda 6, Yoichi Shimizu 7, Taichi Shimazu 8, Jun Kako 9
PMCID: PMC11367804  PMID: 37963324

Abstract

Purpose: To identify nursing support for caregiver burden in family caregivers of patients with cancer. Methods: This scoping review was guided by Arksey and O’Malley’s six-stage scoping review framework. All available published articles from database inception to July 31, 2023 were systematically searched through PubMed, CINAHL, CENTRAL, and Ichushi-Web of the Japan Medical Abstract Society databases with additional relevant studies from the article list. Each key journal was manually searched. Results: Overall, 502 articles were screened, and 34 were finally included. The results of the qualitative thematic analysis were categorized into 7 components of nursing support: psychological and educational support, psychological and educational support using mainly non-face-to-face (Information and Communication Technology), psychological and educational support mainly using non-face-to-face (telephone) methods, mindfulness to support, support aimed at reducing caregiver stress, support for both patients and caregivers, and others. Of the 34 studies, 23 were randomized controlled trials (RCT), and the remaining 11 were non-RCTs. Conclusion: The results of the scoping review categorized nursing support for caregiver burden in the family caregivers of patients with cancer into 7 components. Future research should examine the feasibility of implementing these components.

Keywords: burden, cancer, caregivers, family, nursing, scoping review

Introduction

Family caregivers play an essential role in the direct care and support of patients with cancer. 1 The importance of family caregivers is increasing with a shift to outpatient treatment and home-based care. 1 The guidelines for family support in palliative care highlight the importance of support as an indicator. 2 Studies have also focused on the burden of caregiving tasks. 1 Previous research has been conducted on the caregiver burden for various cancer types.3,4

Caregiver burden is a subjective appraisal among family caregivers and is defined as the caregiver’s perceived physical, emotional, social, and financial hardships as a result of caring for their relatives. 5 While considerable research has been conducted in the area of caregiving for older adults, in recent years, there has been an increase in research on caregiver burden among caregivers of patients terminally ill with cancer, including patients with cancer. 6 A study of caregivers of patients with pancreatic cancer noted that burden is an important predictor of mental illness. 4 Moreover, the higher caregiver burden in family caregivers of older adults with cancer calls for target interventions to reduce adverse health outcomes related to caregiver burden. 7 Research on caregiver burden among caregivers of patients with solid tumor cancer demonstrated inconsistent intervention effects. 8 While most studies focus on caregiver burden in family members of patients with cancer, few have focused on terminal cancer.

Educational interventions provided by nurses are called nursing interventions or nursing support. In providing nursing support to patients, nurses should use the current evidence in conjunction with clinical experience and patient values. 9 Therefore, providing families of patients with effective nursing support is a high priority. However, in the case of caregiver burden in family caregivers of patients with cancer, including terminal cancer, nursing support is frequently provided based on patient value and nurses’ clinical experience since sufficient evidence has not been accumulated. More effective palliation of caregiver burden in family caregivers of patients terminally ill with cancer requires evidence-based support in addition to nurses’ clinical experience. This need requires a broad, comprehensive review of research on nursing support for caregiver burden in family caregivers of patients with cancer. There is a gap between clinical practice and research evidence. To bridge this gap, this comprehensive scoping review summarizes relevant research regarding patients with cancer across all stages and a variety of research designs. 10

This scoping review comprehensively explores the nursing support provided to reduce caregiver burden among family caregivers of patients with cancer. The current results are expected to be used to understand the actual state of nursing support provided to family caregivers of patients terminally ill with cancer in the future, as well as to examine possible support that can be implemented.

Materials and Methods

Methods

We conducted a scoping review to comprehensively explore and map the nursing support provided to reduce caregiver burden in family caregivers of patients with cancer. We applied a standard framework proposed by Arksey and O’Malley11,12 and expanded by the Joanna Briggs Institute. 13 We followed reporting guidelines described in the Preferred Reporting Items for Systematic Reviews and Meta-analyses Statement (PRISMA) extension for PRISMA Scoping Reviews. 14 The scoping review protocol was published prospectively. 10 Nursing support was defined in the protocol paper, implying that we defined nursing support as support that nurses can implement. In addition, we determined through discussions among the researchers whether nurses could implement each support extracted. This review did not require ethical approval because it is a secondary analysis of pre-existing, published data.

Identifying the Research Question

The research question was “What types of nursing support are provided to reduce caregiver burden in family caregivers of patients with cancer?”

Identifying Relevant Studies

We searched PubMed, CINAHL, Cochrane Central Register of Controlled Trials in the Cochrane Library, and Ichushi-Web of the Japan Medical Abstract Society databases from each database’s inception to July 31, 2023. We also assessed the relevant studies from the article list and manually searched through key journals. Search formulas were first created in PubMed as an initial search. Subsequently, search formulas were created to match other databases (see the protocol paper 14 for details of the search formula). KK and KM completed this initial search in consultation with the librarian.

Eligibility criteria were determined by physicians and nurses specializing in caregiver burden in family caregivers of patients with cancer (details are described in the protocol paper 14 ). We identified studies using the Patient–Intervention–Comparison–Outcome model. The inclusion criteria were (1) caregivers of patients with cancer aged 18 years or older, (2) intervention studies for the relief of caregiver burden or outcomes similar to caregiver burden, (3) nursing support including multidisciplinary support, and (4) quantitative data showing an outcome. We excluded papers wherein more than 20% of the participants were patients without cancer, papers with secondary analyses, and papers in languages other than Japanese and English.

Study Selection Process

The first screening included an independent assessment of the title and abstracts of all studies by 2 reviewers (KK and MK), followed by second screening and full-text screening against eligibility criteria. Any discrepancies in study selection were resolved by discussion between the reviewers. The study selection process is summarized in Figure 1.

Figure 1.

Figure 1.

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Flow diagram of the scoping review process.

Charting the Data

A form was created to extract study characteristics, including first author, publication year, country of publication, study design, aims, sample size, type of nursing support, provider, and results of the interventions for caregiver burden. Data were extracted independently by the same 2 reviewers. Studies were excluded at this phase if they did not meet the eligibility criteria.

Collating, Summarizing, and Reporting the Results

The nursing support provided in the studies extracted from the literature review was categorized by care component using qualitative thematic analysis. In the analysis, the classification by 1 author (KK) was checked by another author (MK), followed by the study group to verify validity. We categorized the components of nursing support according to whether they were primarily nursing support or whether nurses were included in the support provided by multidisciplinary professionals.

Results

Figure 1 shows the literature screening process and results. We identified 502 studies based on eligibility criteria. After removing 98 duplicates, we screened the titles and abstracts of 404 studies and excluded 311 studies. In addition, we assessed 93 full-text studies for eligibility and excluded 55 for the following reasons: conference abstract (n = 21), difficult for nurses to conduct (n = 16), ineligible study design (n = 11), ineligible outcome (n = 5), ineligible patient (n = 4), ineligible intervention (n = 1), and others (n = 1).

Table 1 presents the characteristics and care components of nursing support, its design, and its main results. The 34 studies that were ultimately included were categorized into 7 components of nursing support following the qualitative thematic analysis. They included psychological and educational support (n = 9),15-23 psychological and educational support using mainly non-face-to-face methods (information and communication technology [ICT]; n = 8),24-31 psychological and educational support mainly using non-face-to-face (telephone) methods (n = 4),32-35 support aimed at reducing caregiver stress (n = 4),36-39 mindfulness to support (n = 3),40-42 support for both patients and caregivers (n = 2),43,44 and other (n = 4).45-48 Of the 34 studies, 23 were randomized controlled trials (RCTs), and the remaining 11 were non-RCTs. Twenty articles reported improvement in caregiver burden after intervention.15-17,19-21,25,28,30,31,36-39,41,42,44,46-48 Six studies of face-to-face based interventions showed an improving trend in burden.15-17,19-21 These consisted of a caregiver educational program, family caregiver palliative care intervention, psychosocial intervention program, and reminiscence therapy (duration was 4 days or until skill acquisition). Four studies of ICT-based interventions showed an improving trend in burden.25,28,30,31 These consisted of a comprehensive health enhancement support system, expressive writing, and problem-solving techniques (duration was 7 days to 24 months). Support aimed at reducing caregiver stress was mostly improved.36-39 These consisted of an integrated caregiver support program (duration was 2 weeks to 9 months). Telephone-based interventions resulted in no improvement in caregiver burden. These consisted of telephone sessions (duration was from 4 weeks until the patient died). Using mindfulness to support displayed positive results in 2 studies41,42 (the duration was from 5 to 8 weeks). Three other studies showed an improved trend in burden.46-48 These consisted of music therapy and relaxation techniques (duration was from 1 week to 3 months).

Table 1.

Characteristics of the Included Studies (N = 34).

Care component Author (year)/Country Study design Disease Methods; 1) Procedures, 2) Duration, 3) Number of participants Main results
Intervention group Control group
Mainly face-to-face psychological and educational support McMillan et al (2006)/USA RCT Cancer 1) Hospice standard care plus visit to teach coping skills intervention by intervention nurse 1) Control① hospice standard care Control② hospice standard care plus support At the 30-day follow-up, the coping skills intervention led to significantly greater improvement in caregiver QOL (P = .03), burden of patient symptoms P < .001), and caregiving task burden (P = .038).
2) A 4-day training session 2)—
3) n = 111 3) Control① n = 109 Control② n = 108
Belgacem et al (2013)/France RCT Hematologic cancer 1) Caregiver educational program (meal support, nursing care, welfare care, symptom management) taught by nurse 1) None Evolution scores, which measured the difference between baseline and final scores, showed an improvement in patients' and caregivers' quality of life and an alleviated burden for experimental group caregivers.
2) Caregiver needed to acquire the skills to perform care independently 2) None
3) n = 33 3) n = 34
Bahrami et al (2014)/Iran Two-group two-step before-after clinical trial Breast cancer 1) Supportive educational program-based COPE model (a) first session lasted for 60 min by researcher, (b)Second session for 30 min and held on the 5th day, (c) 30 min phone call after each session by researcher 1) Conventional care The mean score of physical, mental, spiritual, environmental domains and overall quality of life in the family caregivers in the experimental group was significantly increased compared to the control group. In the experimental group, the mean caring burden score among the caregivers significantly decreased compared to the control group.
2) None 2) None
3) n = 32 3) n = 32
Holm et al (2016)/Sweden RCT Cancer 1) Psycho-educational group intervention (the aim of the intervention was to promote preparedness for caregiving) by physician, nurse, and social worker/priest 1) Standard support from their palliative settings The intervention group had significantly increased their preparedness for caregiving in both the short-term and long-term follow-up compared with the control group. No effects of the intervention were found on rewards for caregiving, caregiver burden, health, anxiety, or depression.
2) Three sessions, covering 2 h once a week over 3 weeks. 2)—
3) n = 98 3) n = 122
Ferrell et al (2019)/USA RCT Stage III or IV gastrointestinal, gynecologic, or genitourinary cancers 1) (a) Family caregiver palliative care intervention (4 teaching sessions organized by the 4 QOL domains, assessment of current self-care strategies, and the formulation of a tailored self-care plan) by an advanced practice oncology nurse, (b) sessions were combined if desired and delivered in-person or by phone 1) Usual care A four-part educational program demonstrated improved outcomes in the intervention group in the measures of objective burden, caregiving preparation, and quality of life.
2) 4-week period 2) -
3) n = 117 3) n = 123
Gabriel et al (2019)/Nigeria Quasi-experimental study Breast cancer 1) (a) Psychosocial intervention program (6 face-to-face sessions, each session was 90 min) by nurse on the appraisal factor and QOL. 1) Routine care The psychosocial intervention reduced caregiver burden at both baseline and 6 weeks (P < .001, P = .018, respectively) and improved the caregiver QOL (P < .001, P = .020, respectively) in the intervention group compared to the control group.
2) Once a week for 6 weeks 2) -
3) n = 54 3) n = 54
Chen et al (2020)/China RCT Advanced cancer 1) Reminiscence therapy based on positive psychology theory (8 sessions, which lasted 45-60 min) by researcher 1) Conventional care The experimental group showed a significant reduction in the burden of spousal care compared to the control group (P < .01). The experimental group also had higher levels of positive feelings and hope than did the control group (P < .01).
2)None 2)—
3) n = 27 3) n = 29
Tanco et al (2021)/USA Prospective Advanced cancer 1) Outpatient supportive care center (SCC) (SCC can access this care multiple times throughout the day) 1) Palliative care unit (PCU) PCU caregivers reported worse subjective stress burden (P = .003) and mental health (P = .030).
2)— 2)—
3) n = 98 3) n = 74
Semere et al (2023)/USA RCT Metastatic solid tumor 1) (a) Nurses were instructed to engage the caregiver, if present, during key parts of the intervention visits. The goals of visit included establishing rapport with both the patient and caregiver, addressing patient symptoms, and helping the patient to choose a surrogate decision-maker, (b) the first visit took place in-person and subsequent visits took place either in-person or by phone. 1) Standard care (oncology nurses assessing patient symptoms and administering treatments, including chemotherapy) The intervention found no significant differences in caregiver burden (adjusted mean difference −.39; P = .90), depression (adjusted mean difference −.22, P = .26), or anxiety (adjusted mean difference .09, P = .58), between the intervention and standard care at 3 months.
2) Sessions lasted approximately 60 minutes and 3 months 2)—
3) n = 233 3) n = 208
Psychological and educational support using mainly non-face-to-face (ICT) Chih et al (2013)/USA RCT Advanced cancer 1) (a) Comprehensive health enhancement support system (CHESS) (caregiver and patient tracking of patient status and caregiver reporting of his/her own status, via a check-in service plus the clinician report (CR) delivers this information to the clinicians, (b) access to CHESS. (c) CHESS included the CR that summarized the information provided by patients and caregivers at check-in and made it available online to the clinicians. 1) CHESS only Caregivers in the comprehensive health enhancement support system+clinician
2) Every 7 days 2)— Report group reported less negative mood than those in the comprehensive health enhancement
3) n = 110 3) n = 117 Support system-only group at both 6 months (P = .009) and 12 months (P = .004). Groups were not significantly different on caregiver preparedness or physical burden at either time point.
DuBenske et al (2014)/USA RCT Advanced non-small cell lung cancer 1) (a) Comprehensive health enhancement support system (CHESS) is an extensively studied eHealth system, having been (over its evolutions) the subject of numerous needs assessments, (b) internet-based format, CHESS integrates services to facilitate coping by: (P) providing ready and organized access to information; (2) serving as a channel for communication and support with peers, experts, and users’ social networks; and (3) acting as an interactive coach by gathering information from the user, applying algorithms or decision rules, and providing feedback specifically relevant to the user 1) Standard care plus a laptop computer with internet access Caregivers randomized to CHESS reported lower burden (P = .021) and negative mood (P = .006) than those in the internet group.
2) 24 months 2) -
3) n = 117 3) n = 117
Reblin et al (2018)/USA RCT Malignant brain tumor 1) (a) Electronic social network assessment program (eSNAP) was a web-based application; participants can engage in the tool via a webpage, (b) within eSNAP, users list people/groups who do or could help within 6 categories of support: (H) hands on, (2) informational, (3) communication, (4) financial, (5) emotional, and (6) self-care 1) Usual care (questionnaires only) Informal family caregivers reported high caregiver burden and distress at baseline, with burden remaining stable over the course of the study. The intervention group was significantly less depressed, but anxiety remained stable across groups.
2) All participants were asked to complete follow-up questionnaires electronically at 3 weeks and 6 weeks after completion of the baseline questionnaire. 2) All participants were asked to complete follow-up questionnaires electronically at 3 weeks and 6 weeks after completion of the baseline questionnaire
3) n = 30 3) n = 10
Applebaum et al (2018)/USA RCT Any site or stage of cancer 1) The CCC workshop included 5 webcasts. The introductory webcast was based upon sessions 1 and 2 of meaning-centered psychotherapy for cancer caregivers (MCP-C) and provided an overview of MCP modules (ie, legacy, choice, creativity, and connectedness) and a discussion about identity in the context of caregiving. 1) Usual care (the provision of the American cancer Society’s telephone helpline number and direction to the American cancer society website where participants could find local and national resources) A longitudinal mixed-effects model found significant differential increases in benefit finding in favor of intervention group. No significant difference in care burden between the 2 groups (P = .15).
2) 14 weeks 2)—
3) n = 42 3) n = 42
Harvey et al (2018)/USA RCT Hematopoietic stem cell transplant 1) (a) Proportion of benefit finding form of expressive writing assert emotional disclosure need not be negative to effectively reduce distress. (b) Emailed online expressive writing prompt 3 times. 1) (a) ①Expressive disclosure form of expressive writing, ② time management form, (b) emailed online writing prompt 3 times. Written forms of emotional disclosure might improve burden, stress, and depression contingent on writing condition.
2) 3 weeks 2) 3 weeks
3) n = 22 3) ① n = 22 ② n = 20
Oliver et al (2021)/USA Clinical trial Cancer 1) Access for cancer caregivers to education and support for shared decision-making (ACCESS) used a facebook group as support for caregivers as they used web conferencing to join the hospice staff in plan of care meeting. 1) Pilot study Reported levels of depression, anxiety, and quality of life were not significantly different between those who chose to participate in the clinical trial and those who participated only in this pilot study; however, caregiver burden was higher for those consenting to the clinical trial (P < .001).
2) Every other week 2)—
3) n = 87 3 n = 42
Boele et al (2022)/USA RCT Malignant brain tumor 1) (a) The 8-week SmartCare program was based on the representational approach and aims to teach caregivers effective problem-solving techniques through in-depth reflection of experiences, beliefs, and knowledge. (b) Caregiver needs screen (CNS) rating the level of distress associated with 32 common caregiving needs/issues and then choose an issue to start or continue working on. (c) This plan was refined with telephone counseling from the research nurse (within 48 h, with follow-up to review implemented strategies or goals 5 days later). 1) Enhanced care as usual (ECAU) included attention-control emails (personalized, friendly messages) every 2 weeks, and access to an ECAU webpage (with 32 evidence-based SmartCare guides, links to web-based resources, basic friends, and family page) For depressive symptoms, no significant group differences were found. Caregiving-specific distress decreased in the intervention group compared with
2) 8 weeks 2) 16 weeks
3) n = 80 3) n = 40
Xu et al (2023)/USA RCT Colorectal, bladder, ovarian, cervical, or uterine cancer 1) (a) Web-based patient reported outcomes-informed symptom management system (PRISMS) included information written in plain language and demonstrative videos that provided education and skills training on ostomy care, the most common complications, safe physical activity, and fall prevention for optimized recovery, (b) PRISMS provided patients and caregivers with personalized feedback on care and support based on the symptom and complication severity and dispatched detailed self-care-management instructions based on the continuous monitoring of patient-reported outcomes,(c) the “talk with a nurse” function provided participants with the ability to contact the WOCN for professional support. 1) Usual care for patients with newly created ostomies and their family caregivers included the distribution of printed materials and ostomy care demonstrations provided by clinical nurses prior to hospital discharge. PRISMS caregivers experienced a greater decrease in caregiver burden. PRISMS caregivers experienced a larger decrease (mean diff = −7.37, P = .09) in the Zarit burden interview than UC caregivers.
2) 2 months 2)—
3) n = 16 3) n = 7
Psychological and educational support mainly using non-face-to-face (telephone) methods O'Hara et al (2010)/USA RCT Diagnosis of lung, breast, gastrointestinal, or genitourinary cancer within the past 12 weeks 1) (a) Specialized nurse educators conducted 4 weekly telephone sessions on topics of problem-solving skills, communicating with health care providers, managing symptoms, and advance care planning. (b) After these sessions ended, nurses called patients at least monthly to provide support and further information. 1) Usual care There were no significant differences in caregiver burden between intervention and usual care conditions. Follow-up analyses showed that higher caregiver objective burden and stress burden were related to lower patient quality of life, higher symptom intensity, and higher depressed mood.
2) 4 weeks 2)—
3) n = 108 3) n = 90
Dionne-odom et al (2015)/USA RCT Advanced-stage cancer 1) (a) Palliative care intervention (cultivating communication skills with patient and health care clinicians) by telephone 3 sessions, (b) the nurse coaches conducted 3 once-per-week CG educational sessions by telephone covering the 3 chapters of the CYC-C guidebook. 1) Wait-control Between-group differences in depression scores from enrollment to 3 months (before delayed group started intervention) favored the early group. There were no differences in QOL or burden.
2) Any ongoing or new issues until the patient participant died or the study ended 2)—
3) n = 61 3) n = 61
Heckel et al (2018)/Australia RCT Any cancer type, stages I-III 1) (a) a New model of service delivery (ie, a telephone outcall program) (b) caregivers received 3 calls from a 13 11 20 nurse with the first outcall at the start of the program (5-10 days post-randomization), the second outcall 1 month later and the last outcall 3 months following the second call. 1) Caregiver received 3 outcalls at the same time points as those in the intervention group The intervention had no effect on the primary outcome (caregiver burden) but reduced the number of caregiver unmet needs.
2) 4 months 2)—
3) n = 108 3) n = 108
Ghorbani et al (2020)/Iran RCT Esophageal, stomach and colorectal cancer 1) (a) Intervention method was that in addition to face-to-face training and educational pamphlets; they received 4 telephone counseling sessions during the 3 courses of chemotherapy. (b) Each telephone counseling session lasted for 15 to 20 min. 1) Face-to-face and individual 20-minute training session The results of the independent t test showed no significant difference between the 2 groups (P = .42). The results also revealed that the mean scores of caregiver strain (Zarit burden interview) and unmet needs decreased following the intervention, and the mean scores of self-care behaviors increased in the intervention group after the intervention (P = .001).
2) - 2)—
3) n = 30 3) n = 30
Support aimed at reducing caregiver stress Lee et al (2016)/Taiwan Cohort and quasi-experimental clinical trial Advanced cancer 1) (a) Integrated caregiver support program (coping strategies, assistance, resources, education), (b) first, 15-20 min face-to-face sessions, second, 30-40 min face - to -face sessions. 1) Routine ward care Caregiver self-efficacy significantly increased, and the subjective caregiving burden significantly decreased in the experimental group as patients' death approached. Heart rate variability also indicated a calming effect of the intervention, helping caregivers face patients' death.
2) 2 weeks intervals until patients’ death 2)—
3) n = 40 3) n = 41
Aubin et al (2021)/Canada RCT Nonsurgical lung cancer 1) (a) Systematic family caregiver distress screening and problem assessment, (b) plan tailed problem-solving strategies, (c) liaison by the oncology nurse. 1) Usual care Family caregivers’ distress decreased over time, but this reduction was observed in both groups. Similar results were found for secondary outcomes.
2) 9 months 2)—
3) n = 54 3) n = 55
Wasmani et al (2022)/Iran Quasi-experimental study Cancer 1) The intervention consisted of 2 sessions of training in proper communication skills, anger management and nervous tension, and dialogue and problem-solving sessions for caregivers. 1) No intervention After the intervention, the mean score of care burden in the intervention group decreased from 56.93 (SD = 11.08) to 42.93 (SD = 9.78) and in the control group it changed from 54.27 (SD = 11.38) to 56.80 (SD = 11.43). There was a significant difference in the mean scores of the 2 groups (P < .001).
2) 2 weeks 2)—
3) n = 17 3) n = 15
Abdigaravand et al (2023)/Iran Quasi-experimental study Cancer 1) (a) Intervention to provide care for patients and preserve themselves from strain, the relevant educational content was provided in a booklet using reliable sources, (b) telephone follow-ups were to empower caregivers, (c) first 2 sessions were held in-person (45-60 min) to enable caregivers to manage the effects of chemotherapy on patients. Caregivers were trained in 3 groups of 13-14 people, (d) 1 week after the in-person sessions, telephone counseling and follow-up were conducted for 6 weeks, and one telephone counseling session was held every week as each teleconsultation lasted 15-20 min. 1) The control group received just routine training. The caregiver burden decreased significantly in the intervention group, so its score was 77.33 (SD = 8.49), 58.93 (SD = 8.03), and 52.78 (SD = 6.86) before the study, immediately after and 6 weeks later, respectively (P < .001).
2) 6 weeks 2)—
3) n = 54 3) n = 36
Using mindfulness to support both patients and caregivers van den Hurk et al (2015)/Netherlands A mixed-methods pilot study Cytological Or histological proven non-small cell or small cell Lung cancer 1) (a) Mindfulness-based stress reduction (MBSR) training, (b) 8 sessions of 2.5 h each, a silent day and daily home practice assignments of 45 min per day 1)— Among participants no significant changes were found in psychological distress. Caregiver burden in partners decreased significantly after following mindfulness-based stress reduction.
2) 8 weeks 2)—
3) n = 16 3)—
Schellekens et al (2017)/Netherlands RCT Cytologically or histologically proven non-small cell or small cell lung cancer 1) (a) Mindfulness-based stress reduction (MBSR) training, (b) 8 sessions of 2.5 h each, a silent day and daily home practice assignments of 45 min per day 1) Care as usual (CAU) consisted of anticancer treatment, medical consultations, and supportive care, including psychosocial care After CAU+MBSR patients reported significantly less psychological distress than after CAU. Baseline distress moderated outcome: Those with more distress benefited most from MBSR. Additionally, after CAU+MBSR patients showed more improvements in quality of life, mindfulness skills, self-compassion, and rumination than after CAU.
2) 8 weeks 2)—
3) n = 21 3) n = 23
Ahmad et al (2020)/Jordan A quasi-experimental (pre-test/post-test) study Cancer 1) (a) Intervention was a 5-week mindfulness-based training, in which all participants attended 150 min of face-to-face sessions in the first and second week. (b) During the remaining 3 weeks, the researcher undertook a 20-min weekly phone call as a follow-up with each participant. Further, participants were instructed to independently adhere to their daily 20 min mindfulness practice at home for the whole duration of the intervention. 1) Educational intervention (EI) program content in the booklet addressed the topics of pain, common bladder and bowel problems, loss of appetite, nausea and vomiting, breathlessness, pressure sores, mobility, medical equipment, personal care, emotional aspects, support for caregivers, and nearing death and bereavement The family caregivers in the mindfulness group demonstrated a significant improvement in measures of self-efficacy and reduction in burden scores. Further, in the EI group, only self-efficacy was significantly higher in the post-test. Burden reduction was significantly higher in the EI group than the mindfulness group.
2) 5 weeks 2)—
3) n = 68 3) n = 68
Support for both patients and caregivers Sherwood et al (2012)/USA RCT A stage III or IV solid tumor 1) Nurse-delivered symptom management intervention (The symptom management problem-solving intervention group received 3 telephone contacts by a master’'s prepared nurse with experience in oncology) 1) The coach-led information (patients and caregivers in the coach-led group each received the same numbers of contacts (6 for patients) and (3 for the caregivers). The coach was defined as a research staff member who made contact and interacted with the caregivers but provided no instruction or counseling of problem-solving techniques. There was no significant main effect of the problem-solving intervention on symptom assistance at 10 weeks, but there were 2 significant interactions, between trial arm and depressive symptoms and between baseline assistance with symptoms and relationship to the patient. No significant trial arm effects were found on caregiver emotional health, but assistance with greater number of symptoms was associated with worse caregiver depressive symptoms (P < .01) and burden (impact on schedule, P < .01).
2) 8 weeks 2)—
3) n = 112 3) n = 113
Badr et al (2015)/USA Randomized pilot trial Advanced lung cancer 1) Dyadic psychosocial intervention (telephone based, the topics were self-care, stress and coping, symptom management, effective communication, problem-solving, and maintaining and enhancing relationships) in 60 minutes. 1) Usual medical care Participants receiving the intervention evidenced significant improvements (P < .001) in depression, anxiety, and caregiver burden than usual medical care.
2) 6 weeks 2)—
3) n = 20 3) n = 19
Other Wells et al (2004)/UK RCT Cancer without bone metastases 1) Nurse-led early discharge following axillary clearance 1) Conventional stay Nurse-led early discharge had no adverse effects on quality of life or patient satisfaction, had little effect on caregiver burden, improved communication between primary and secondary care, reduced cancellations and was safely implemented in a mixed rural/urban setting.
2) - 2)—
3) n = 54 3) n = 54
Schulman-Green et al (2023)/USA Pilot randomized trial Breast cancer 1) (a) Intervention gave managing cancer care: A caregiver’s guide (MCC-CG) modules to family caregivers. (b) MCC-CG was self-directed intervention. 1) Control group gave the symptom management group a system management toolkit. Intervention participants improved their palliative care literacy and SFM engagement, reduced uncertainty and caregiver burden, increased competence/personal gain, and had more goals of care conversations over time. MCC-CG has preliminary efficacy.
2) 3 months 2) 3 months
3) n = 18 3) n = 17
Valero-Cantero et al (2004)/Spain RCT Advanced cancer (home palliative care) 1) The intervention consisted of a 30 min music session, received daily for 7 consecutive days. 1) Recorded repetition of the basic therapeutic training education given. Caregiver burden fell significantly in the intervention group (CSI change: −.56, SD = 2.16) but increased in the control group (CSI change: +.68, SD = 1.47), with a significant group × moment interaction, F (1, 80) = 9.30, P = .003, P = .11.
2) 1 week 2) 1 week
3) n = 41 3) n = 41
Barghbani et al (2023)/Iran RCT Cancer 1) Benson relaxation technique was taught to participants in the intervention group individually in a room separated from chemotherapy and radiotherapy rooms, (b) a CD was also provided to the research units to use at home. Then, participants were asked to use the relaxation technique twice a day, in the morning and the afternoon, with an interval of at least 2 hours, for 20 minutes. 1) The control group did not receive any intervention. They were only followed up regarding the occurrence of stressful events, not participating in the class, or using other programs effective on stress based on the mentioned times. After the intervention, the mean score of the total care burden in the intervention and control groups changed to 57.21 (SD = 14.66) and 75.47 (SD = 13.94), respectively. Data analysis shows a significant decrease in the intervention group (P < .001).
2) 4 weeks 2)—
3) n = 56 3) n = 57
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RCT: randomized controlled trial; COPE: Creativity, Optimism, Planning, Expert Information; CYC-C guide book: Charting Your Course.

Discussion

Our research question was to identify the nursing support provided to reduce caregiver burden in family caregivers of patients with cancer. While most previous studies focused on the burden of caregiving for a specific cancer type, this study shows the caregiver burden for cancer in general. We categorized the 34 included studies into 7 components of nursing support. The most commonly classified nursing support groups were educational programs, family caregiver palliative care interventions, and psychosocial intervention programs, and most of the components included family caregivers of terminally ill patients with cancer. Nearly 70% of the studies were RCTs. Educational psychological interventions showed variability in effectiveness. ICT-based psycho-educational interventions also showed positive results.

Nurses were the primary intervention support in 13 studies, which also included specialist oncology nurses.15,16,19,20,23,30,32-34,37,38,43,45 Multidisciplinary collaboration existed between nurses, physicians, social workers, health professionals, and supportive care teams. Interventions for caregiver burden included those that were implemented not only by nurses but also through multidisciplinary collaboration. In our results, nursing support for caregiver burden was mainly face-to-face psychological and educational support provided by a nurse, including teaching coping and caregiving skills, and establishing self-care plans. Similarly, we identified psychological and educational support mainly using telephone methods provided by nurses, including support using problem-solving skills and providing support information. A previous study reported the types of interventions based on intervention components. 49 The authors categorized similar interventions as educational programs, a web-based program, and a telephone support service outcall program, among others. 49 Other studies labeled the intervention as face-to-face or via telephone. 50 These components were similar to those of nursing supports identified in our study. Face-to-face and non-face-to-face implementation could differ in terms of their effects on the caregiver burden. Therefore, we categorized the intervention type accordingly.

Psychological and educational interventions using ICT were mainly conducted through multidisciplinary methods and included those conducted by caregivers themselves using the Internet. Psychological and educational interventions were characterized as including both nurse-led and multidisciplinary interventions. Psycho-educational interventions have been mainly face-to-face or telephone-based, but recently, ICT-based interventions have been increasingly used.24-31 ICT-based interventions are highly versatile as they can be used anywhere and at any time. In addition, many studies were RCTs, which varied in terms of their effects on caregiver burden. In a systematic review limited to Internet-based supportive interventions for caregivers of persons with dementia, all 17 applicable studies were RCTs, and 10 studies used outcomes related to caregiver burden. 51 However, most studies used multidisciplinary interventions. In addition, Internet-based support in dementia caregiving is effective in treating depressive symptoms, perceived stress, anxiety, and self-efficacy. 51 Therefore, we believe that family caregivers of patients with cancer are likely to be studied using Internet-based strategies in the future.

Face-to-face based interventions often included nurses as interveners, and the intervention periods varied. Telephone-based intervention were those that the nurses were implementing in addition to their usual care. Most interventions included counseling sessions. Although we believe that telephone-based assistance can be used as standard support, no effective trend was demonstrated in this study. Support aimed at reducing caregiver stress was mainly conducted by nurses, and the content was diverse, including approaches to caregiver screening assessments and problem-solving skills. Using mindfulness to support was a commonly employed mindfulness-based stress reduction (MBSR) methodology.

A previous study of informal caregivers for people living with cancer indicated that there were not any clearly identifiable patterns in the effects of interventions based on the delivery format. 52 It is necessary to examine not only whether an intervention works but also how it is implemented, its causal mechanisms, and how its effects vary by context.53,54 The frequency and duration of an intervention vary across studies, and whether frequency and duration lead to reduced caregiving burden needs to be clarified in future studies.

In 1 out of 7 components of nursing support, no research has been reported for patients terminally ill with cancer. Caregiver burden is not directly invasive to the patient because the target is a family caregiver; thus, there is no difference in intervention content depending on the stage of the cancer. As such, studies on nursing support for caregiver burden in caregivers of patients with advanced cancer could be applicable to family caregivers of patients terminally ill with cancer. Accumulation of evidence in nursing support for these caregivers is expected in the future.

This scoping review has some limitations. First, the search was limited to studies published in Japanese and English, and this review could have excluded relevant articles published in other languages. Second, this scoping review was not designed to assess methodological quality. Therefore, the conclusion is based on the extraction of nursing support being provided rather than on the effectiveness of nursing support for caregiver burden. Third, the search was limited to studies in which at least 80% of the participants were patients with cancer; thus, studies conducted primarily on caregiver burden in family caregivers of patients without cancer were not included. Further, because of the wide range of cancer stages included, it is impossible to determine the effects on disease characteristics, and so on. Fourth, caregiver burden was not operationally defined to distinguish between subjective and objective caregiver burden.

Conclusion

This scoping review categorized nursing support for caregiver burden in family caregivers of patients with cancer into 7 components. Future research should examine the feasibility of implementing these nursing support categories for caregiver burden in family caregivers of patients with cancer with a prognosis of months or weeks and should explore effective prognosis-based nursing support components.

Acknowledgments

We thank Editage (www.editage.jp) for English-language editing.

Footnotes

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the JSPS KAKENHI [grant number 21H03236]. This study received guidance from the National Center Consortium in Implementation Science for Health Equity (N-EQUITY) funded by the Japan Health Research Promotion Bureau (JH) Research Fund (2019-(1)-4) and JH Project fund (JHP2022-J-02).

Authorship Statement: All authors (Kohei Kajiwara, Masamitsu Kobayashi, Miharu Morikawa, Yusuke Kanno, Kimiko Nakano, Yoshinobu Matsuda, Yoichi Shimizu, Taichi Shimazu, Jun Kako) contributed to the preparation, drafting, and editing of this scoping review. Kohei Kajiwara and Masamitsu Kobayashi conceived the idea for this research, followed by discussions with the other authors (Miharu Morikawa, Yusuke Kanno, Kimiko Nakano, Yoshinobu Matsuda, Yoichi Shimizu, Taichi Shimazu, and Jun Kako), contributing to the finalizing of the research idea. Kohei Kajiwara and Masamitsu Kobayashi developed the data extraction tool and the systematic database search strategy in consultation with the specialist librarian at YCU. All authors contributed to the preparation and editing of the manuscript and read and approved the final version of this manuscript.

ORCID iDs

Kohei Kajiwara https://orcid.org/0000-0001-5470-2209

Kimiko Nakano https://orcid.org/0000-0001-5384-5646

Yoshinobu Matsuda https://orcid.org/0000-0001-5092-9377

Yoichi Shimizu https://orcid.org/0000-0002-5154-090X

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