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SYSTEMATIC REVIEW UPDATE Open Access The experiences of family caregivers living with breast cancer patients in low-and middle-income countries: a systematic review Grace Kusi 1,2 , Adwoa Bemah Boamah Mensah 1* , Kofi Boamah Mensah 3,4 , Veronica Millicent Dzomeku 1 , Felix Apiribu 1 , Precious Adade Duodu 1 , Bakinam Adamu 1 , Pascal Agbadi 1 and Kwadwo Osei Bonsu 4 Abstract Introduction: Caregivers of women with breast cancer in low-and-middle-income countries experience significant physical and economic burdens. The review aimed to map the evidence of studies that had reported on the experiences of family caregivers of women diagnosed with breast cancer. Methods: A systematic literature search was conducted in CINAHL, PubMed, PsycINFO, Scopus, and Web of Science databases using a combination of key search terms and medical subject heading terms such as family caregiver,breast cancer,”“home care,”“low-and-middle-income countries,”“experience,”“effect,and coping mechanism.A total of 1781 articles were retrieved and screened. Nineteen studies addressing caregiving experiences were included in the final review based on the inclusion and exclusion criteria. Results: The systematic review yielded 19 studies that focused on caregiversmotivation, needs of caregivers, intervention for caregivers, and consequences of caregiving. The most significant correlates of the quality of life among caregivers were disease severity, functional status of patients, and family income. The challenges encountered by caregivers were mostly psychosocial. Conclusions: Caregivers play a crucial role in the management of women with breast cancer. However, they are faced with increasing challenges in their caregiving roles. Understanding the nature and extent of the burden experienced by family caregivers in developing countries will facilitate the development of appropriate interventions that can help improve caregiversquality of life. Gaps in recent studies were identified, and suggestions for future research were also addressed in this review. Systematic review registration: PROSPERO CRD42019118391 Keywords: Breast cancer, Family caregiver, Low- and middle-income countries, Experiences © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. * Correspondence: [email protected] 1 Department of Nursing, Faculty of Allied Health Sciences, College of Health Sciences, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana Full list of author information is available at the end of the article Kusi et al. Systematic Reviews (2020) 9:165 https://doi.org/10.1186/s13643-020-01408-4

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Page 1: The experiences of family caregivers living with breast

SYSTEMATIC REVIEW UPDATE Open Access

The experiences of family caregivers livingwith breast cancer patients in low-andmiddle-income countries: a systematicreviewGrace Kusi1,2, Adwoa Bemah Boamah Mensah 1*, Kofi Boamah Mensah 3,4, Veronica Millicent Dzomeku1,Felix Apiribu1, Precious Adade Duodu1, Bakinam Adamu1, Pascal Agbadi1 and Kwadwo Osei Bonsu4

Abstract

Introduction: Caregivers of women with breast cancer in low-and-middle-income countries experience significantphysical and economic burdens. The review aimed to map the evidence of studies that had reported on theexperiences of family caregivers of women diagnosed with breast cancer.

Methods: A systematic literature search was conducted in CINAHL, PubMed, PsycINFO, Scopus, and Web of Sciencedatabases using a combination of key search terms and medical subject heading terms such as “family caregiver,”“breast cancer,” “home care,” “low-and-middle-income countries,” “experience,” “effect,” and “coping mechanism.” Atotal of 1781 articles were retrieved and screened. Nineteen studies addressing caregiving experiences wereincluded in the final review based on the inclusion and exclusion criteria.

Results: The systematic review yielded 19 studies that focused on caregivers’ motivation, needs of caregivers,intervention for caregivers, and consequences of caregiving. The most significant correlates of the quality of lifeamong caregivers were disease severity, functional status of patients, and family income. The challengesencountered by caregivers were mostly psychosocial.

Conclusions: Caregivers play a crucial role in the management of women with breast cancer. However, they are facedwith increasing challenges in their caregiving roles. Understanding the nature and extent of the burden experiencedby family caregivers in developing countries will facilitate the development of appropriate interventions that can helpimprove caregivers’ quality of life. Gaps in recent studies were identified, and suggestions for future research were alsoaddressed in this review.

Systematic review registration: PROSPERO CRD42019118391

Keywords: Breast cancer, Family caregiver, Low- and middle-income countries, Experiences

© The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License,which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you giveappropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate ifchanges were made. The images or other third party material in this article are included in the article's Creative Commonslicence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commonslicence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtainpermission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to thedata made available in this article, unless otherwise stated in a credit line to the data.

* Correspondence: [email protected] of Nursing, Faculty of Allied Health Sciences, College of HealthSciences, Kwame Nkrumah University of Science and Technology, Kumasi,GhanaFull list of author information is available at the end of the article

Kusi et al. Systematic Reviews (2020) 9:165 https://doi.org/10.1186/s13643-020-01408-4

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IntroductionThe increasing incidence and mortality rate of breast can-cer has produced challenges in caring for women withbreast cancer, especially in low- and middle-income coun-tries (LMICs) [1, 2]. This challenge has implications forrelatives and friends who become family caregivers [3].Breast cancer treatment is now shifting from an inpatientsetting to a more outpatient setting due to contextual bar-riers to oncology services that exist in LMICs, such as lim-ited availability of treatment facilities, lack of cancerspecialists [4], and limited geographical access to oncologycare [5]. This shift has resulted in the role of family care-givers as significant members of the cancer care systemwho are expected to provide physical, emotional, financial,and psychosocial support to women diagnosed with breastcancer in the home setting [6–9]. However, according toKhanjari et al. [10], the current declining socioeconomictrends in LMICs potentially alter the capacity of caregiversto meet the growing demand for home care support forwomen with breast cancer.The burden of breast cancer caregiving includes emo-

tional distress, financial burden, physical stress, andfear of uncertainty among caregivers [11–13]. Further-more, the advanced stage disease presentation, a hall-mark of this disease in LMICs, can result in increasedpsychosocial morbidity, poor physical health, and over-all poor quality of life among caregivers [6, 10, 11, 14].Hashemi-Ghasemabadi et al. [6] have indicated thatcaregivers who deliver care to women with breast can-cer in LMICs experience unique challenges due tounder-resourced and limited cancer support systems.For instance, few West African studies focusing on thisphenomenon have highlighted that challenges encoun-tered by caregivers include loss of job, difficulty in bal-ancing multiple roles, a decline in physical health, lackof access to healthcare funding, emotional trauma, andlack of information in managing breast cancer-relatedsymptoms such as wound and lymphedema [4, 15]. Arecent Ghanaian study reporting on the motivation andcaregiving experiences of family caregivers of advancedbreast cancer patients showed that sociocultural obliga-tion and reciprocity were the main reasons for assum-ing the caregiving role [4]. Further, the study alsohighlighted that caregivers provided multi-dimensionalforms of support such as physical, psychosocial, emo-tional, financial, symptom management, and spiritualsupport for women living with advanced breast cancer.Financial burden through the provision of out-of-pocket money for treatment costs and other relatednon-medical costs were the main challenge reported byparticipants in this study [4]. The study recommendedhome-based support programs and direct governmentalsocial intervention programs to assist caregivers in theircaring role.

However, to date, no systematic review of family care-giving in breast cancer that is specific to LMICs hasbeen conducted to fully understand the experiences andchallenges faced by this group of caregivers. Exploringthe experiences of family caregivers is critical in provid-ing potential interventions that can aid in addressing theneeds of family caregivers in LMICs. Hence, the ration-ale of this systematic review was to summarize and ap-praise existing evidence on studies that had reported on:

(a) Home care experiences of caregivers of womendiagnosed with breast cancer in LMICs.

(b) Effects of caregiving on the family caregivers inLMICs.

(c) Coping mechanisms utilized by family caregivers ofwomen living with breast cancer in LMICs.

Materials and methodsThe protocol of this review is duly registered(CRD42019118391) in the PROSPERO internationalprospective register of systematic reviews. Studies thatexplored the experiences of caregivers living with breastcancer patients in LMICs were searched.

Inclusion and exclusion criteriaAll studies (quantitative studies, qualitative studies, andmixed-method studies) were conducted in diverse set-tings such as hospitals or communities published fromJanuary 2000 to March 2020. Other criteria for inclusionwere (1) family caregivers of breast cancer patients aged18 years and above, (2) providing non-paid caregivingservices to breast cancer patients, (3) full-text publishedarticles from LMICs (low-and-middle-income countrywas operationalized in this study as low-, lower-middle,and upper-middle-income economy based on the Janu-ary 2020 World Bank list of analytical income classifica-tion of economies) [16], (4) reporting on familycaregivers experiences, and (5) articles published in theEnglish language.

Exclusion criteriaStudies were excluded from this review based on the fol-lowing criteria: (1) focused on paid and formal caregiverssuch as healthcare professionals; (2) not published in theEnglish language (due to limited availability of transla-tion service to the authors); and lastly, (3) systematic re-views, abstracts, editorial reports, letters, conferencearticles, and gray literatures with no full-text publishedarticles were excluded because they were not consideredas scientific published articles.

Search strategyA systematic review was conducted according to thePreferred Reporting Items for Systematic Review and

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Meta-Analysis Protocols (PRISMA-P). We conducted acomprehensive search of qualitative, quantitative, andmixed-methods literature that was published from Janu-ary 2000 to March 2020 in the electronic databases, i.e.,PubMed, CINAHL, Scopus, Web of Science, and Psy-cINFO, to retrieve all English language literature thatcontained information on family caregivers of breastcancer patients in low- and middle-income countries. Aspreviously defined, studies were defined into “low-in-come,” “lower-middle-income,” and “upper-middle-in-come” countries as categorized by the World Bank [16].Primary concepts such as “family caregiver,” “breast can-cer,” “home care,” “low-and-middle-income-countries,”“experience,” “effect,” and “coping” and their MedicalSubject Headings (MESH) were used for the search(Additional file 1: Table S1). The subject search and textword search were performed separately in all the data-bases and then combined with Boolean operators “OR”and “AND.” Combined terms used, for example, were(“Caregiv*(MESH)” OR “Family caregiv (MESH)*”) AND(“Breast cancer (MESH)” OR “Breast neoplasm*(-MESH)”) AND (“low-income countr*[tw]” OR “lower-middle-income countr*[tw]”). Additional articles weresearched from other sources such as Google Scholar aswell as hand-searching the references of all includedstudies. This produced three additional articles fromGoogle Scholar [17–19].

Literature screeningFollowing the literature search, citations were importedinto Mendeley Desktop (version 1.19.4) reference managerfor storage and screening of articles as well as the removalof duplicates. The remaining articles were then screenedindependently by titles and abstracts. Two reviewers (GKand KBM) screened all the citations that were identifiedfrom the search using standard systematic review proce-dures (inclusion and exclusion criteria). Any disagreementwas resolved by discussion and consensus or by consultinga third reviewer (ABBM) where needed.

Quality appraisal or assessment toolThe quality of the selected studies was assessed inde-pendently by GK and KBM using the Mixed MethodsAppraisal Tool (MMAT) version 2018 [20]. This toolhas been developed to evaluate qualitative, quantitative,and mixed-method studies using two screening ques-tions and four methodological criteria. The tool assessesthe appropriateness of the aim of the study, adequacyand methodology, study design, participant recruitment,data collection, data analysis, presentation of findings,authors’ discussions, and conclusions [21]. Each questioncarries three possible responses: “yes,” “no,” or” can’ttell.” A star is assigned (four stars maximum possiblescore) to each yes response and is converted to

percentages (from one star = 25% to four stars = 100%)[20]. Using the aforementioned domains, score from 0–25% is regarded as weak, 50% is regarded as moderate,75% is regarded as moderate-strong, and 100% isregarded as strong [20].The interrater reliability for each MMAT dimension

for quality ratings of the included studies was evaluatedusing Cohen’s kappa statistic [22]. This was done to as-sess the level of agreement of quality ratings betweenthe two independent authors (GK and KBM) who per-formed the quality assessment for the included studies.The interrater reliability of each MMAT dimension wasassessed and reported as Cohen’s kappa coefficient and95% confidence interval (95% CI) with two-sided p value.Acceptable kappa values 0.80–0.90, > 0.90, and 1.0 rep-resent strong, almost perfect, and excellent levels ofagreement between raters [22].

Data extraction and analysisTwo reviewers (GK and KBM) independently extractedkey characteristics from the included articles: biblio-graphic information (authors’ name, year of publication,country, and address). Others included the methodology(study aim, design, setting, and sample size), caregivers’characteristics, and major findings on caregivers’ experi-ences, conclusions, and limitations of the study as de-scribed in Table 1. There was significant heterogeneityin the measurement of the outcomes of the eligible stud-ies, making it impossible to pool data in a meta-analysis.Therefore, a narrative analysis or strategy was employedto synthesize the evidence.

ResultsLiterature search resultsOnly articles that had reported on family caregivers ofbreast cancer patients in low- and middle-income coun-tries were included. The initial search returned 1781 re-cords. A total of 430 duplicates were removed using theMendeley Desktop (version 1.19.4). The remaining 1351records were screened for titles and abstracts by the twoindependent reviewers (GK and KBM). We then ex-cluded 1225 articles, and a full-text screening was doneon the remaining 126 articles. Following the full-textscreening, 107 were excluded because they did not meetthe inclusion criteria as detailed in the PRISMA flowdiagram. At the end of the screening procedure, 19peer-reviewed citations remained for final inclusion inthe review [3, 4, 6, 10, 15, 17–19, 23–33].A schema illustrating the screening process is shown

in Fig. 1.

Methodological characteristics of included studiesThe majority of the included studies (n = 15) used quan-titative approaches [3, 10, 15, 18, 19, 23–28, 30–33] and

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Table 1 Summary of study characteristics and findings

Author/year Country Aim/researchquestions

Study design Caregivers Findings Conclusion Limitation

Vahidi et al.(2016) [3]

Iran Determine factorsassociated withcaregiver burdenamong primarycaregivers ofwomen withbreast cancer

Descriptivecorrelation study

150 primarycaregivers;caregivers meanage 39.60 years;77 (51.3%) weremales

Caregivers assistedwith activities ofdaily living,administeringmedication,symptommanagement, andfinancial support.Higher caregiverburden wasassociated withincreasingassistance withactivities of dailyliving, loweducational level,gender, and poorfinancial status

Caregivers mustbe provided withcomprehensivecare needssupport. Primarycaregivers need tobe supportedfinancially byrelevantorganizations,such asgovernmentagencies andcharities. Otherfactors such asdedicating a placefor caregivers inthe clinic toreceive care skillstraining fromexpert nurses canbe effective

Cross-sectionalstudies do notshow thedifference inburden inresponse tocancerprogression in thepatient; therefore,longitudinalstudies arerecommended

Gabriel, Alukoand Okeme(2019) [15]

Nigeria Impact ofcaregiving burdenon the informalcaregivers ofwomen withbreast cancer

Descriptive study 118 caregivers;mean age =41.9 years. Mostwere child (77.1%),spouse (14.4%),and others (8.5%)

Determinants ofhigh caregiverburden werepayment type fortreatment, familyincome,relationship to thepatient, socialsupport, and self-efficacy

Strategies toimprove self-efficacy such asadditional training,follow-up, peereducation, andsupport groupsfor caregiversmight decreasethe caregiverburden

Use ofconveniencesampling makingit difficult toidentify causalrelationships

Zhu et al.(2014) [31]

China To assess thequality of life inmale spousecaregivers

Cross-sectionalstudy

243 spousecaregivers. Meanage = 49.5 years

Decreasing patientfunctional statuswas significantlyassociated withpoor quality of lifeamong caregivers.High familyincome andlonger sleepingtime increased thequality of lifeamong caregivers

Attention shouldbe paid to malespouse caregiversas a separategroup. Nurses canunderstand thestatus of caregiverburden and QOLby assessing bothpatients andspouses. Themental health ofspouse caregiverswas disruptedmore seriouslythan the physicalhealth

The study focusedon spousecaregivers andhence cannot begeneralized forother non-spousalcaregivers

Hashemi-Ghasemabadiet al. (2016)[6]

Iran Transition to thenew role ofcaregiving forfamilies of womenwith breast cancerdiagnosis

Qualitativedescriptiveexploratory study

23 caregivers.Mean age =37.5 years. 69.6%were females and30.4% men

Emerged themes:•“Grasping a newsituation withoutpreparation”•“Perceivedinefficiency”•“Infinite absence”•“Abandoned inthe role”Caregivers citedthat they wereunprepared fortheir new role anddid not have thenecessary skillsand knowledge to

By understandingtheir experiencesin the transition tothe new role, it ispossible toprovide detailedinformation fordesigningevidence-basedhealthcare inter-ventions andcomprehensivefamily-centeredcare program.Also, interventionscan be tailored to

Study could notbe generalizedbecause it is aqualitative study.Provided limitedinformation oncoping strategies

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Table 1 Summary of study characteristics and findings (Continued)

Author/year Country Aim/researchquestions

Study design Caregivers Findings Conclusion Limitation

manage breastcancer and itsrelated symptoms.Caregiving wasalso described asa time-consumingrole which com-peted with otherfamily roles andresponsibilities.

the objectives andresource limita-tions, for the sup-port andresolution of thechallenges of care-givers to decreasethe negative con-sequences ofcaregiving

Sahadevanet al. (2019)[26]

India Identify thedeterminants ofdepression amongcaregivers ofpatients withbreast cancer

Cross-sectionalsurvey

384 caregivers.Mean age =47.25 years. 163(42.4%) weremales

Higher financialresponsibilities,being a spousalcaregiver areimportantdeterminants ofdepression amongcaregivers

Cancer specialistsin treatment teamneed to be awareof the need forpsychologicalassessment ofprincipalcaregivers. Theyshould be trainedto pick updepressivesymptoms and itsassociated riskfactors at theearliest andshould be offeredservices to theneedful. Thisapproachultimatelyimproves theoutcome ofcancer treatment

This cross-sectional surveywas a hospital-based study andmay not begeneralizable toall caregivers inIndia

Jaafar et al.(2014) [24]

Malaysia To examine therates of clinicaldepressivedisorders incaregivers duringbreast cancertreatment

Cross-sectionalstudy

130 caregiverscomprising ofspouses (46.9%),children (40.0%),and siblings(13.1%)

Depressivedisorders wererelated to loweducational statusof caregivers andhigh duration ofcaregiving

This finding givesclues tointerveningdepression amongthe caregivers byproviding supportin the form ofrespite care to thecaregivers andimprovingengagement ofthe caregivers bythe health careproviders. Theresults shouldincrease thehealth careproviders’awareness of thevulnerability ofthis populationand discard apatient-centric ap-proach oftreatment

Data on copingmechanism weremissing in thisstudy. The studywas conducted ina single facilitywhich might limitgeneralizability tosimilar population

Gabriel andMayers (2019)[27]

Nigeria To assess theeffectiveness of apsychosocialintervention inreducing caregiverburden amongcaregivers

Quasi-experimentalstudy

108 caregivers;interventiongroup (54); controlgroup (54).Caregivers wereprimarily spouse(30.6%), parent(15.7%), sibling

Primary caregiverswho received thepsychosocialinterventionreportedsignificantdecrease inburden at 6 weeks

The need foreffective advocacyon the issue ofcaregiver burdenis vital. Relevantstakeholders inthe healthcaresector, especially

Non-randomizeddeign was used torecruitparticipants.Psychosocialintervention didnot address thesubjective aspect

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Table 1 Summary of study characteristics and findings (Continued)

Author/year Country Aim/researchquestions

Study design Caregivers Findings Conclusion Limitation

(17.6%), child(21.3%), and friend(14.8%)

and 12 weeks.Further, thepsychosocialintervention alsoimproved theoverall quality oflife of caregivers

in palliative care,should conductadvocacycampaigns topromote theculture of caringand support forthe person withcancer and thecaregiver

of the caregiverburden

Giray andAkyuz (2019)[28]

Turkey To assessrelationshipsbetween caregiverburden, quality oflife, arm disability,grip strength, andlymphedemasymptoms inpatients withpostmastectomylymphedema

Prospective cross-sectional study

52 caregivers.Mean age = 48.46years. 14 (26.9%)were females and38 (73.1%) weremales

Caregiver burdenwas associatedwith arm disabilityand quality of lifeof these patients.Arm disabilityaffects caregiverburden andquality of life inthese patients.Arm disability washigher in patientsat stage 3lymphedema thanpatients at milderstages

Arm disabilityshould bediagnosed andtreated toimprove caregiverburden andquality of life

This was anobservationalstudy using aconveniencesample.Comparison ofcaregiver burdenbefore and afterlymphedemadevelopment andtreatment canmore enlightenthe importance ofcaregiver burdenin themanagement ofpatients withpostmastectomylymphedema

Moreno-Gonzalezet al. (2019)[29]

Mexico To describe theexperience offamily care ofwomen withbreast cancerduring treatmentfrom theperspective ofcaregivers

Qualitative study Seven caregivers(3 men and 4women)

Male caregiversstated that theabsence of abreast did notinterfere with theperception of theirfemininity orsexualattractiveness.Caregiversexperienced fearand despair fornot knowing howto alleviatewomensymptoms. Also,caregiversexperienced fearof the unknownand sometimesanger. They alsolooked forstrategies tomaintain theiremotionalbalance. Femalecaregivers livingthis experienceexpressed agreater perceptionof the risk ofsuffering frombreast cancer,which favoredtheir self-care byknowing aboutthe timely

The experience ofcaregivers ofwomen withbreast cancergeneratedprofound changesin them throughthe discovery oftheir reach andlimitations indifficult situations

The study leavesaside differentcontexts andevents such asrupture betweencouple and familydisintegration thatmay prevail

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Table 1 Summary of study characteristics and findings (Continued)

Author/year Country Aim/researchquestions

Study design Caregivers Findings Conclusion Limitation

detection

Wulandariet al. (2017)

Indonesia Determine theexperience ofstress andadaptation ofbreast cancerpatient’s family

Qualitative method 7 male caregivers Caregivers citedthat theyexperiencestressors related todifficulty inmanaging of thedisease and thefinancial needs ofthe patient.Caregivers furtherreported thatfinancial problembecame a stressorfrom thebeginning untilthe end of thebreast cancertreatment.Components ofcaregiver copingmechanismconsisted ofstrategies such asemotional supportfrom healthprofessionals,prayer, andgratitude

The experience ofstress andadaptation of thefamily of breastcancer patients isa continuousstage. Continuedcoping such assupport fromprofessionalnurses may beneeded tominimize thestress andimproveadaptation offamily caregivers

Caregivers in thisstudy was small.Study did notexplaincomprehensivelymeasures thatwere undertakento ensuretrustworthiness ofthe study

Bahrami andFarzi (2014)[18]

Iran Determine theeffect of asupportiveeducationalprogram on thecaregiving burdenand quality of lifein the familycaregivers ofwomen withbreast cancer

Two‑grouptwo‑step before–after clinical trial

64 familycaregivers. Meanage (controlgroup) = 38.97Mean age(experimentalgroup)

The studyimplemented asupportiveeducationalprogram to agroup ofcaregivers. Afterthe interventionhas beenimplemented, theresults showedthat in theexperimentalgroup, the meanscore of physical,mental, spiritual,andenvironmentaldomains andoverall quality oflife in the familycaregivers wassignificantlyincreasedcompared to thecontrol group.Further, in theexperimentalgroup, the meanscore of caringburden amongthe caregivers wassignificantlydecreasedcompared to thecontrol group

The findings ofthe studysuggested thatsupportiveeducationalprogram canimprove physical,psychological,spiritual, andenvironmentaldomains andoverall quality oflife. It can alsodecrease thecaring burden inthe familycaregivers ofwomen withbreast cancer

Small sample sizewas used

Mahadevan Malaysia To determine the A cross-sectional 130 caregivers Generally, There should be The study was

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Table 1 Summary of study characteristics and findings (Continued)

Author/year Country Aim/researchquestions

Study design Caregivers Findings Conclusion Limitation

et al. (2013)[32]

proportion ofstress among thecaregivers ofbreast cancerpatients receivingoncologictreatment at KualaLumpur Hospitaland to determinethe predictors ofstress among thecaregivers

study with mean age of42.8 ± 14.5 years

caregivers hadhigher levels ofstress.Approximately16% of caregiversfelt emotionallystrained and 26%acknowledge thattaking care of thepatient is hard onthem emotionally.In addition,caregivers felt lessin control of theirlives. Caregiverswho looked afterolder patientswere less likely tobe stressed

awareness amongmedical personnelabout the highlikelihood of stressamong the familycaregivers ofbreast cancerpatients and aheightenedsensitivity to thecaregivers’emotionalcondition.Caregivers shouldhave easy accessto mental healthservices. Thereshould be respitecare facilities inorder to relievethe caregiversfrom constantcaregiving burdenand stress

cross-sectional indesign, wherebybeing conductedat one point oftime; no causal re-lationship can beinferred betweenthe outcomes andthe variables. Theapplication ofnon-random sam-pling methodwithin a conveni-ence samplesframe could createsampling bias,resulting in over-or under-representation ofcertain membersof the studypopulation

Yeung et al.(2018) [30]

China This study aimedto examine theexperience of guiltand its correlatesamong Chinesehusbands ofwomen withbreast cancer

A cross-sectionalsurvey

176 husbandscaregivers withmean age of 50.22years

Lowerendorsement ofthe “masculinitystrength” gender-role norm, andhigher caregivingburden and socialsupport seekingwere associatedwith higher care-giving guilt. Unex-pectedly, highermarital satisfactionand less protectivebuffering were as-sociated withhigher caregivingguilt. Youngerhusband care-givers in our sam-ple were morelikely to reporthigher guilt. Also,caregiving burdenwas associatedwith caregiverguilt. Also, protect-ive buffering andcaregiver guilt wasconditional tocaregiver’s level ofmarital satisfaction

The new findingsand complexinterplay betweencaregivers’characteristics(includingendorsement ofmale gender-rolenorms and maritalsatisfaction) andcoping strategies(protective buffer-ing and seekingsocial support) inpredicting guiltimply that individ-ual and culturalcharacteristicsmay change theeffectiveness ofspecific copingstrategies in can-cer caregivers’well-being

Caregivers wererecruited fromtwo hospitals.Hence, samplemay not berepresentative ofthe totalpopulation ofcaregivers ofbreast cancerpatients

Heidari Gorjiet al. (2012)

Iran To examine thecorrelates ofdepression inrelation to qualityof life amongbreast cancercaregivers

A cross-sectionaldescriptive design

Findings weredemonstrated thathigh percent ofcaregivers wereafflicted by mildand moderatedepression. Theresults showedthat 42 and 11%reported

The studydemonstrate thatpsychologicalissues have asignificant impacton quality of life.Additionally, helpand attention tocaregivers wouldbe beneficial in

This is a cross-sectional study;hence, results maynot begeneralizable toall caregivers inIran

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Table 1 Summary of study characteristics and findings (Continued)

Author/year Country Aim/researchquestions

Study design Caregivers Findings Conclusion Limitation

moderate and lowquality of life,respectively. Thestudy demonstratethat psychologicalissues have asignificant impacton quality of life

improving qualityof life of all familyof patients

Yuanyuan Anet al. (2019)

China To identify theinfluence of familycaregiver’s burdenon breast cancerpatient’s QoL andpossible mediators

A cross-sectionaldesign

382 caregivers Higher level offamily caregiver’sburden wasassociated withhigher levels ofpatient’s anxietyand depression

Given theimportant role offamily caregiver’sburden, it shouldbe targeted bythe interventionaiming to improvebreast cancerpatients’ QoL andwell-being

The data werecross-sectional,which precludesconclusions re-garding causationand the directionof relationshipamong variables.Second, the find-ings are onlygeneralizable tothe populationstudied

Nejad et al.(2016)

Iran Determine andcompare thecaregiver strainindex scores ofbreast cancerinformalcaregivers, beforeand after apatient-caregivereducational andtelephone follow-up program

Experimental studydesign

60 caregiversMean age > 30(28.3 years)30–50 (43.3 years)< 50 (28.3 years)

The meancaregiver strainscore of theinterventiongroup was 8.3 ± 2,and it dropped to4.8 ± 2.3 post-intervention

Caregiver burdendecreasedsignificantly in theinterventiongroup after thepatient-caregivereducation andfollow-up program(P < 0.001)

The interventionperiod wasrelatively short,thus limiting thegeneralizability ofthe results

Din et al.(2017) [25]

Malaysia To determine theanxiety disordersspecificallyfocusing on thefamily caregiversof breast cancerpatients

A cross-sectionalstudy

130 caregiver-patient dyads

The study foundthat more than a10th (11.5%, n =15) of the familymembers whowere primarilyinvolved in caringfor breast cancerpatients hadanxiety disorders.Specifically, 8caregivers (6.1%)had generalizedanxiety disorder, 6were (4.6%)diagnosed to havepanic disorder,and one (0.8%)had social phobiaassociated withboth the patients’type of treatmentand non-sharedcaregiving

A multidisciplinarymanagementapproach shouldbe extended tothose at riskwhich woulddirectly andinadvertentlyoptimize thetreatment care forpatients withbreast cancer

It was cross-sectional in designthat the directionof the factors andthe risk factors ofanxiety disorderscould not beestablished. Thesmall sample sizelimited the powerof the study todetect any otherfactors particularlyinvolving the care-giving processsuch as durationof care that couldhave significanceto the anxietydisorders

Khanjari et al.(2014) [35]

Iran To explore howfamily caregiversof women withbreast cancer inIran describe theareas in life whichare important totheir quality of life

Descriptive andprospective cross-sectional study

88 familycaregiversconsisted of 29(33%) men and 59(67%) womenwith mean (SD)41.1 (13.9).

A majority offamily caregiversreported a highpsychologicalimpact describedas experiences ofshock and stress,feeling sadness

Family caregiversneed support indealing with thepsychologicalstrain related tothe situation byacquiringinformation about

Sample size of thefamily caregivers isa limitation to thestudy. The use ofsemi-structured in-terviews may notbe as adequate tocapture a

Kusi et al. Systematic Reviews (2020) 9:165 Page 9 of 18

Page 10: The experiences of family caregivers living with breast

Table 1 Summary of study characteristics and findings (Continued)

Author/year Country Aim/researchquestions

Study design Caregivers Findings Conclusion Limitation

(QoL) and todetermine whichareas in life thatare influenced byhaving a familymember withbreast cancer

and depressed,fear and anxiety,and havingdisturbed sleep.Furthermore,family caregiversstated otheraspects whichmay have anegative impacton mental andemotional well-being but notcovered, namely,descriptions offear of recurrence,uncertainty of out-come, and worryabout future anddeath. Many fam-ily caregivers re-ported a changein their relation-ship with their sickrelative and thatthe diseasetended to amplifyexisting problems.Religious aspectssuch as feeling astronger connec-tion to God aswell as optimismand hope wereexpressed to beenhanced forsome of the familycaregivers

cancer and itstreatment and inhow tocommunicateabout their ownconcerns withtheir relative withcancer. Moreover,education andinterventions fromhealth careprofessionalswould bebeneficial inimproving QoL forthe families ofpatients

phenomenon asmore in-depthinterviews

Kusi et al.(2020) [4]

Ghana To explore thecaregivingmotivations andexperiences offamily caregiversof patients livingwith advancedbreast cancer

Exploratorydescriptivephenomenologicalapproach

15 caregivers. 7were males while8 were femaleswith age rangefrom 25 to73 years.

Caregivers wereinvolved inbathing,grooming, andcooking forpatients. Theirexperiencesfurther includesymptommanagement suchas themanagement ofpain,lymphedema,wound, andevaluation ofsymptoms.Caregivers werethe mainproviders ofemotional supportby offeringpatients withwords ofencouragement.They alsoexperiencefinancial burdenby providing out-

There is the needfor home-basedsupport programsto assist caregiversin their caring roleespecially in thearea of symptommanagement anddirect governmen-tal social interven-tion programs(e.g., transporta-tion to treatmentfacilities and drugsfor patients) toresource-limitedcaregiving familiesof women withadvanced breastcancer. The Na-tional Health In-surance Schemeshould be ex-panded to fullycover breast can-cer treatment towomen and theirfamily caregivers

The findingscannot begeneralized basedon the sampleselection(caregivers of onlyadvanced breastcancer patients).The study waslimited to a singlesite

Kusi et al. Systematic Reviews (2020) 9:165 Page 10 of 18

Page 11: The experiences of family caregivers living with breast

the remaining (n = 4) were qualitative studies [4, 6, 17,29]. Studies were conducted in the following countries:Nigeria (n = 2), Malaysia (n = 3), Ghana (n = 1), China(n = 3), Iran (n = 6), Turkey (n = 1), Mexico (n = 1),Indonesia (n = 1), and India (n = 1).A total of 2330 family caregivers were included in the

studies. The sample sizes within the included studiesranged from 7 caregivers [17, 29] to 384 caregivers [26].The disease severity of the patients being cared for bythe caregivers was only stated in 10 studies [4, 15, 24,26, 28–32, 34].Table 1 shows the summary of the included studies on

caregivers’ experiences of women diagnosed with breastcancer.

Quality appraisal or assessment of included studiesQuality appraisal of the included works of literatureusing MMAT ranged from moderate (50%) to strongquality (100%). Two studies were rated as strong quality[4, 6]. Fifteen studies were scored as moderate-strong

quality [15, 18, 19, 23–33, 35], and the remaining twostudies [3, 17] were scored as moderate. None of the in-cluded studies was excluded based on their quality as-sessment score. The level of agreement of quality ratingsbetween the two independent raters ranged from strong[kappa 0.79; 95% (0.4–1.2); p = 0.001] to excellent agree-ment [kappa 1.0; 95% (0.9–1.0); p =0.001]. Table 2shows the quality assessment of the included studies.

Findings on the caregivers’ experiencesThe synthesis of the included articles showed that care-givers’ experiences fell into 10 main categories, namely,(1) caregivers’ motivation, (2) roles of family caregivers,(3) quality of life among caregivers, (4) physical burdenof caregiving, (5) psychological burden of caregiving, (6)disruption in social life, (7) economic burden of caregiv-ing, (8) need for support, (9) interventions for improvingcaregiver experience, and lastly (10) coping. These find-ings are described in the ensuing paragraphs.

Table 1 Summary of study characteristics and findings (Continued)

Author/year Country Aim/researchquestions

Study design Caregivers Findings Conclusion Limitation

of-pocket moneyfor treatmentcosts and otherrelated non-medical costs

1781 records identified through database searching

CINAHL (9), PubMed (426), Scopus (73), Web of Science (1142),

PsycINFO (128), Other sources (3).

Scre

enin

gIn

clud

edE

ligib

ility

Iden

tific

atio

n

1351 records after duplicates removed

1351 records screened on titles and abstract

1225 records excluded

126 full-text articles assessed for eligibility

107 full-text articles excluded

High income countries (19)

Survivorship studies (4)

Non- English version found (1)

Patient focused studies (81)

Other cancer caregivers (2)

19 Studies included in the final review

Fig. 1 PRISMA flow diagram showing the systematic screening process

Kusi et al. Systematic Reviews (2020) 9:165 Page 11 of 18

Page 12: The experiences of family caregivers living with breast

Table

2Qualityappraisalo

finclud

edpape

rsandtheirMixed

Metho

dsApp

raisalTool

(MMAT)

score

Qualitative

Quantitative

Autho

r,year

Sourcesrelevant

toaddress

research

questio

n

AnalysisProcess

relevant

toaddress

research

questio

n

Find

ings

adeq

uately

derived

from

data

Interpretatio

nof

results

sufficien

tlysubstantiatedby

data

Sampling

strategy

redu

ceselectionbias

Measurin

gapprop

riate

for

interven

tion

/outcome

Sample

represen

tativen

ess

Accep

table

respon

serate

Total

points

Score

Quality

Vahidi

etal.

(2016)

[3]

00

11

(2/4)

50Mod

erate

Gabriel,Aluko,

andOkeme

(2019)

[15]

01

11

(3/4)

75Mod

erate-

strong

Zhuet

al.

(2014)

[31]

01

11

(3/4)

75Mod

erate-

strong

Sahade

van

etal.(2019)

[26]

01

11

(3/4)

75Mod

erate-

strong

Jaafar

etal.

(2014)

[24]

01

11

(3/4)

75Mod

erate-

strong

Gabrieland

Mayers.(2019)

[27]

01

11

(3/4)

75Mod

erate

-stron

g

Girayand

Akyuz

(2019)

[28]

01

11

(3/4)

75Mod

erate-

strong

Moren

o-Gon

zalezet

al.

(2019)

[29]

01

11

(3/4)

75Mod

erate-

strong

Hashe

mi-

Ghasemabadi

etal.(2016)[6]

11

11

(4/4)

100

Strong

Mahadevan

etal.(2013)

[32]

01

11

(3/4)

75Mod

erate-

strong

Bahram

iand

Farzi(2014)

[18]

11

01

(3/4)

75Mod

erate-

strong

Wulandari

etal.(2017)

01

01

(2/4)

50Mod

erate

Yeun

get

al.

(2018)

[30]

01

11

(3/4)

75Mod

erate-

strong

HeidariGorji

etal.(2012)

01

11

(3/4)

75Mod

erate-

strong

Yuanyuan

An

etal.(2019)

01

11

(3/4)

75Mod

erate-

strong

Kusi et al. Systematic Reviews (2020) 9:165 Page 12 of 18

Page 13: The experiences of family caregivers living with breast

Table

2Qualityappraisalo

finclud

edpape

rsandtheirMixed

Metho

dsApp

raisalTool

(MMAT)

score(Con

tinued)

Qualitative

Quantitative

Autho

r,year

Sourcesrelevant

toaddress

research

questio

n

AnalysisProcess

relevant

toaddress

research

questio

n

Find

ings

adeq

uately

derived

from

data

Interpretatio

nof

results

sufficien

tlysubstantiatedby

data

Sampling

strategy

redu

ceselectionbias

Measurin

gapprop

riate

for

interven

tion

/outcome

Sample

represen

tativen

ess

Accep

table

respon

serate

Total

points

Score

Quality

Nejad

etal.

(2016)

11

01

(3/4)

75Mod

erate-

strong

Din

etal.

(2017)

[25]

01

11

(3/4)

75Mod

erate-

strong

Khanjariet

al.

(2014)

[35]

01

11

(3/4)

75Mod

erate-

strong

Kusiet

al.

(2020)

[4]

11

11

(4/4)

100

Strong

k;0.9(0.6–1.2)

p<0.05

k;0.8(0.5–1.1)

p<0.001

k;1.0(0.9–1.0)

p=0.001

k;0.9(0.7–1.1)

p<0.05

k;0.79

(0.4–1.2)

p<0.001

k;1.0(0.9–1.0)

p<0.001

k;1.0(0.9–1.0)

p<0.001

k;0.8(0.4–

1.2)

p=0.001

Indicators:0

crite

riano

tmet,1

crite

riamet.Scale

1,25

%(one

crite

rionmet);scale2,

50%

(twocrite

riamet);scale3,

75%

(three

crite

riamet);scale4,

100%

(allcrite

riamet)

k;Coh

en’skapp

acoefficient,9

5%CI;95

%Con

fiden

ceInterval,p

;p-value

Kusi et al. Systematic Reviews (2020) 9:165 Page 13 of 18

Page 14: The experiences of family caregivers living with breast

Caregivers’ motivationThree studies focused on the caregivers’ motivation fordelivering care to women with breast cancer [4, 6, 30].In the first study, caregivers cited a sense of responsibil-ity and commitment as forms of motivation for theircaregiving roles [6]. One Ghanaian study reported thatfamily and sociocultural obligations prompted familymembers, especially females, to assume the caregivingrole for women with breast cancer [4]. However, twostudies conducted in Ghana [4] and China [30] reportedthat family-oriented cultural norms also prompted malessuch as spouse caregivers to assume the role of primarycaregivers.

Roles of family caregiversFour studies emphasized the role of caregivers in themanagement of breast cancer [3, 4, 26, 29]. Vahidi et al.[3] and Kusi et al. [4] suggested that caregivers playedkey roles in assisting patients with activities of daily liv-ing and the administration of medications. The studiesalso showed that caregivers played roles in assisting withtreatment decision-making and symptom management[3, 4, 26, 29]. Moreno-González et al. [29] and Kusi et al.[4] also emphasized that caregivers managed specificsymptoms such as breast wound and lymphedema,evaluation of symptoms, and management of pain. Onestudy also reported that caregivers were the primarysource of psychosocial, spiritual, and financial supportfor women with breast cancer [4].

Quality of life among caregiversSeven articles gave an account of the quality of life ofcaregivers. The reports indicated that caregivers ofwomen diagnosed with breast cancer had low levels ofquality of life as compared to the general healthy popu-lation [3, 15, 23, 26, 28, 31, 33]. One study reported thatthe patient correlates of poor quality of life among fam-ily caregivers were advanced-stage breast cancer, poorfunctional status, frequent hospitalization, longer dur-ation of breast cancer [15], lack of transportation [3],and high symptom burdens such as wound [31] andpostmastectomy lymphedema [28]. Further, An et al.[23] also cited that higher levels of anxiety and depres-sion were associated with poor quality of life amongcaregivers. Lastly, three studies highlighted that lack offormal support services that characterized developingcountries also resulted in poor quality of life amongcaregivers [3, 10, 33].

Physical burden of caregivingFour studies emphasized that caregivers reported a mod-erate to severe decline in physical health [6, 10, 17, 31].Altered sleep patterns and hypertension were the fre-quently reported physical symptoms experienced by the

caregivers [6, 10, 17]. Zhu et al. also highlighted that lowfamily income and increasing age are predictors of phys-ical burden among caregivers [31].

Psychological burden of caregivingThe majority of the included studies reported that psy-chological burden was the most frequent stressor thatcaregivers encountered [6, 10, 17, 25–27, 29–33]. Ac-cording to Khanjari et al. [10], more than 70% of familycaregivers experienced severe psychological impacts 6months following breast cancer diagnosis and the as-sumption of the caregiving role. These studies also iden-tified some conditions described as psychologicalburdens among the caregivers. Six studies cited depres-sion as a common psychological burden among care-givers [10, 24, 30–33]. Studies cited that factors such asage [32], male gender, altered sleeping pattern [10, 17,30, 31], longer duration of caregiving [24, 26, 32], lowereducational level, not sharing caregiving responsibilities[32], and decreased functional status of patients [24, 32]were significantly associated with stressors such as de-pression among caregivers. Additionally, anxiety had alsobeen identified as a common psychological distress thatis experienced by caregivers [17, 25]. According to Dinet al., about one third of caregivers suffered fromanxiety-related disorders [25]. Furthermore, Din et al.[25] reported that longer caregiving duration and ab-sence of shared caregiving were significantly associatedwith anxiety disorders. Moreover, four of the includedstudies reported that anxiety among caregivers wascaused by the uncertainties of breast cancer outcomes,fear of recurrence, and poor financial supports availableto caregivers [10, 17, 25, 26, 29]. Several emotional trau-mas such as fear, shock, anger, and sadness were alsocited by caregivers in three studies [6, 26, 29].

Disruption in social lifeHashemi-Ghasemabadi et al. [6] reported that caregiversexperienced a loss of normal life. This study also re-ported that caregivers experienced deteriorating relation-ships with other family members. Some caregivers citedthat they felt isolated and lacked support from familyand friends, which increased the burden associated withtheir caregiving roles [6].

Economic burden of caregivingEight papers examined the economic burden associatedwith caregiving around breast cancer [3, 6, 10, 15, 17,24, 27, 29]. Two studies reported that caregivers usuallydecreased their working hours or lost paid jobs as a re-sult of the caregiving role [17, 24]. It was also reportedthat even in conditions where caregivers still engaged inpaid jobs, high treatment costs coupled with the absenceof fully financed healthcare system that exists in LMICs

Kusi et al. Systematic Reviews (2020) 9:165 Page 14 of 18

Page 15: The experiences of family caregivers living with breast

created a high economic burden for family caregivers[15, 17, 24, 27, 29]. The synthesized findings also showedthat lack of basic financial resources [15, 29] and inad-equate income for meeting caregiving demands [3, 6, 10,27] also resulted in financial burden for caregivers. Fur-ther, Gabriel and Mayers [27] suggested that given theextreme financial burden that is faced by caregivers indeveloping countries, educational interventions might beineffective in improving the financial well-being amongcaregivers.

The need for supportThe need for social support was the most frequent needthat was cited by the caregivers across six included stud-ies [6, 17, 25, 29–31]. Caregivers cited that they had notreceived adequate social support from their families andfriends [17, 25, 31]. Specifically, caregivers described theneed for sharing caregiving responsibilities with otherfamily members and friends [6, 25, 30, 31].Nonetheless, Yeung et al. [30] and Vahidi et al. [3] re-

ported that seeking support from families and friendsamong spouse caregivers may result in increased emo-tional distress as it may be culturally interpreted as asign of weakness and lack of self-confidence. Further, inthree studies, caregivers also stressed the importance ofsupport from the formal care systems to help them man-age patients’ symptoms in the home setting [6, 17, 29].

Interventions for improving the caregiver’s experienceThree articles examined interventions to support familycaregivers [18, 19, 27]. Largely, all the studies reportedsignificant improvement in the quality of life afterpsycho-educational intervention. Particularly, the im-provements in caregivers’ quality of life were related tomeasures such as the emotional aspect of caregiving. Inthe first study [27], it was reported that caregivers weregiven psycho-educational interventions to improve theirquality of life. Caregivers in the interventional group re-ceived 6 weeks of information about adjustment to therole of family caregivers and strategies to deal with theemotional aspects of caregiving. This quasi-experimentalstudy reported that caregivers in the interventionalgroup reported better quality of life after the 6 weeks[27]. It was reported that the provision of informationalsupport aided in decreasing caregiving burden amongthe caregivers. However, the intervention did not affectthe financial well-being of caregivers.The second education intervention study [18] exam-

ined the effect of a supportive educational program onthe caring burden and quality of life of family caregivers.The intervention group in this study reported a clear in-crease in caregivers’ knowledge about breast cancermanagement, physical, psychological, spiritual, and en-vironmental dimensions of health. Lastly, the third study

[19] evaluated the effect of an educational and telephonefollow-up on caregiver burden. Results from this showedthat caregiver burden decreased significantly among theintervention group.

CopingThree of the included studies reported on coping strat-egies used by family caregivers [10, 17, 29]. These stud-ies reported that religious coping such as putting one’sfaith in God was vital in improving the quality of lifeamong caregivers [10, 17, 29]. Two of the studies furtherreported that caregivers reported that being religiousprovided them with meaning in their caregiving roles[10, 17]. Further, one study also showed that previousknowledge on breast cancer aided caregivers to cope ef-fectively in their caring role [29].

DiscussionIn this systematic review, key evidence on family care-givers of women diagnosed with breast cancer in LMICshas been highlighted. Reviews focusing on caregivers ofwomen with breast cancer in LMICs are missing in theliterature. The current systematic review, therefore, ad-dressed this gap by adding to the knowledge in this area.The current review demonstrated that family mem-

bers, including male spouses, assumed the caregivingrole for women diagnosed with breast cancer. Based onthis finding, future research using comparative study de-signs should be conducted to examine how breast cancercaregiving differs among male and female caregivers.This systematic review further highlighted the roles thatare played by family caregivers in providing physical,spiritual, emotional, and financial support to womenwith breast cancer in LMICs [3, 4]. Furthermore, studiesin this review highlighted the significant role played bycaregivers in symptom management [3, 4, 26]. Despitethis important finding, only one of the included studies[4] provided information on how symptoms such aspain, lymphedema, and breast wound are managed inthe home by the caregivers. The level of empirical evi-dence addressing how family caregivers manage symp-toms in LMICs where there is evidence of limited formalsupport structures needs further exploration using quali-tative methods.The review identified a range of burdens that are en-

countered by caregivers. Caregivers reported challengessuch as fear, depression, and hypertension [6, 25, 31]. Fi-nancial challenges such as lack of transportation, loss ofa paid job, and high treatment cost were also fundamen-tal sources of stress for caregivers across several studiesin this review [3, 26, 27, 29]. This finding is expected,considering the financial burden that such caregiverroles put on families. This is because these caregiversare already overburdened by the lack of formal support

Kusi et al. Systematic Reviews (2020) 9:165 Page 15 of 18

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services and poor economic status in LMICs. Therefore,these identified challenges encountered by the caregiversin LMICs in their caregiving roles represent areas in thecaregivers’ lives that need to be addressed in policyformulation.Also, it was reported that disease severity and declin-

ing functional status impacted the quality of life of thecaregivers [3, 15, 26, 31]. As such, how the caregivers’challenges change according to the progression of breastcancer is an important topic for further exploration infuture longitudinal studies.The findings of this review also showed that educa-

tional and psychological interventions could prove asrelevant tools in improving the wellbeing of family care-givers [18, 19, 27]. Accordingly, it would be importantfor future study to focus on the development of educa-tional and supportive interventions for family caregiversto help address their challenges.One of the most striking gaps observed in this system-

atic review is the lack of qualitative studies on the care-givers of women with breast cancer in LMICs. Only fourstudies explored the experiences and challenges thatwere faced by the caregivers in their caregiving rolesusing qualitative designs [4, 6, 17, 29]. This findingtherefore offers opportunity for further qualitative worksinto breast cancer caregiving in LMICs. This method ofenquiry will produce a rich, detailed, and rigorous dataon the phenomenon by allowing participants to naturallyshare their lived experiences in their setting.Lastly, there are a few studies that explored other as-

pects of caregiver wellbeing such as disruption in sociallife, coping measures, and intervention for caregivers [6].Therefore, a need exists to focus future studies on theseareas of the caregiver wellbeing.

Strengths and limitationsSome limitations of this systematic review are worthnoting. First, this review found a relatively smallnumber of relevant studies. With a publication periodfrom January 2000 to March 2020, only 19 studiesthat had reported on family caregivers of breast can-cer patients were identified and synthesized. This mayhinder the generalizability of the research findings.However, with expanded attention to breast cancercaregivers in LMICs, this review can drive future re-search and also inform policy. Further limitation islanguage restriction. Non-English language articleswere excluded due to the limited capacity to accessprofessional language services. This is challengingsince family caregiving in breast cancer is socio-cultural and context-specific. Excluding articles innon-English languages may have resulted in a limitedunderstanding of the phenomenon under review andtherefore poses a risk of bias in extrapolating the

results to a broader population. Further, not consider-ing studies that had been published in the developedcountries might have resulted in the exclusion of rele-vant studies.In addition, it was not feasible to synthesize the results

in a meta-analysis as the included studies were clearlyheterogenous. For instance, the included studies useddifferent methods such as correlational studies, cross-sectional designs, and self-reported data to obtain care-givers’ reported experiences. It was however decided apriori to include all studies regardless of their study de-sign as the aim of this study was to investigate the diver-sity of studies reporting on caregivers of women livingwith breast cancer in LMICs, thus obtaining a broadperspective of the phenomenon under review.The strength of this systematic review includes the use

of an MMAT tool for the quality appraisal by two inde-pendent reviewers. Also, we are the first to systematic-ally map evidence and report on the experiences offamily caregivers of breast cancer patients in low- andmiddle-income countries.

ConclusionsThe incidence of breast cancer is increasing inLMICs. This has serious implications for family care-givers. The burden associated with the caregiving roleis further amplified by limited availability and accessto palliative services and formal structures to supportcaregivers in their caring roles. Also, due to factorssuch as financial constraints, there may be a lack ofsocial protection policies for breast cancer caregivers.The high psychological and financial burdens associ-ated with caregiving in developing countries createthe need to raise awareness about the neglected needsof family caregivers.Enhanced support for caregivers should be highlighted

as a priority in LMICs. There are numerous gaps in pol-icy and education about caregivers that need to be ad-dressed. The available evidence in this review does notcomprehensively address how caregiver challenges canbe reduced. Therefore, further research is needed to gen-erate empirical data to inform an evidence-based ap-proach to addressing family caregivers’ challenges inLMICs.

Contribution of the paperWhat is known about this topic?

� Breast cancer is a common malignancy amongwomen in LMICs.

� There is a transition of breast cancer treatment fromthe in-patient setting to the out-patient setting.

Kusi et al. Systematic Reviews (2020) 9:165 Page 16 of 18

Page 17: The experiences of family caregivers living with breast

What this paper adds:

� Evidence on family caregivers of breast cancerpatients in LMICs.

� Identify the limited evidence and the existing gaps inresearch related to breast cancer caregiving thaturgently needs to be addressed.

� Family caregivers play a key role in providing homecare for breast cancer patients in LMICs.

� Family caregivers experience challenges in theircaregiving role.

Supplementary informationSupplementary information accompanies this paper at https://doi.org/10.1186/s13643-020-01408-4.

Additional file 1: Table S1. Search strategy.

AbbreviationsLMICs: Low-and middle-income countries; MMAT: Mixed Methods AppraisalTool

AcknowledgmentsNone.

Authors’ contributionsGK: conceptualization, design, literature search, review/screening of articles,drafting of the original manuscript, review, editing, and approval of themanuscript for publication. ABBM: conceptualization, design, supervision,literature search, review/screening of articles, drafting of the originalmanuscript, review, editing, and approval of the manuscript for publication.KBM: literature search, review/screening of articles, review, editing, andapproval of the manuscript for publication. All other authors: review, editing,and approval of the manuscript for publication.

FundingThe authors have no funding support for this study.

Availability of data and materialsAll data generated or analyzed during this study are included in thispublished article (and its supplementary information files). The data can beaccessed at figshare data repository through https://doi.org/10.6084/m9.figshare.12089205.

Ethics approval and consent to participateNot applicable.

Consent for publicationNot applicable.

Competing interestsThe authors declare that they have no competing interests.

Author details1Department of Nursing, Faculty of Allied Health Sciences, College of HealthSciences, Kwame Nkrumah University of Science and Technology, Kumasi,Ghana. 2Department of Obstetrics and Gynecology, Komfo Anokye TeachingHospital, Kumasi, Ghana. 3Oncology Directorate, Komfo Anokye TeachingHospital, Kumasi, Ghana. 4Department of Pharmacy Practice, Faculty ofPharmacy and Pharmaceutical Sciences, Kwame Nkrumah University ofScience and Technology, Kumasi, Ghana.

Received: 19 September 2019 Accepted: 10 June 2020

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