The experiences of family caregivers living with breast cancer patients in low-and middle-income countries: a systematic review

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 caregivers’ motivation, 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 caregivers’ quality of life. Gaps in recent studies were identified, and suggestions for future research were also addressed in this review.

Systematic review registration

PROSPERO CRD42019118391

Introduction

The increasing incidence and mortality rate of breast cancer has produced challenges in caring for women with breast cancer, especially in low- and middle-income countries (LMICs) [1, 2]. This challenge has implications for relatives and friends who become family caregivers [3]. Breast cancer treatment is now shifting from an inpatient setting to a more outpatient setting due to contextual barriers to oncology services that exist in LMICs, such as limited availability of treatment facilities, lack of cancer specialists [4], and limited geographical access to oncology care [5]. This shift has resulted in the role of family caregivers as significant members of the cancer care system who are expected to provide physical, emotional, financial, and psychosocial support to women diagnosed with breast cancer in the home setting [6,7,8,9]. However, according to Khanjari et al. [10], the current declining socioeconomic trends in LMICs potentially alter the capacity of caregivers to meet the growing demand for home care support for women with breast cancer.

The burden of breast cancer caregiving includes emotional distress, financial burden, physical stress, and fear of uncertainty among caregivers [11,12,13]. Furthermore, the advanced stage disease presentation, a hallmark of this disease in LMICs, can result in increased psychosocial morbidity, poor physical health, and overall poor quality of life among caregivers [6, 10, 11, 14]. Hashemi-Ghasemabadi et al. [6] have indicated that caregivers who deliver care to women with breast cancer in LMICs experience unique challenges due to under-resourced and limited cancer support systems. For instance, few West African studies focusing on this phenomenon have highlighted that challenges encountered by caregivers include loss of job, difficulty in balancing multiple roles, a decline in physical health, lack of access to healthcare funding, emotional trauma, and lack of information in managing breast cancer-related symptoms such as wound and lymphedema [4, 15]. A recent Ghanaian study reporting on the motivation and caregiving experiences of family caregivers of advanced breast cancer patients showed that sociocultural obligation and reciprocity were the main reasons for assuming the caregiving role [4]. Further, the study also highlighted that caregivers provided multi-dimensional forms of support such as physical, psychosocial, emotional, financial, symptom management, and spiritual support for women living with advanced breast cancer. Financial burden through the provision of out-of-pocket money for treatment costs and other related non-medical costs were the main challenge reported by participants in this study [4]. The study recommended home-based support programs and direct governmental social intervention programs to assist caregivers in their caring role.

However, to date, no systematic review of family caregiving in breast cancer that is specific to LMICs has been conducted to fully understand the experiences and challenges faced by this group of caregivers. Exploring the experiences of family caregivers is critical in providing potential interventions that can aid in addressing the needs of family caregivers in LMICs. Hence, the rationale of this systematic review was to summarize and appraise existing evidence on studies that had reported on:

• (a) Home care experiences of caregivers of women diagnosed with breast cancer in LMICs.

• (b) Effects of caregiving on the family caregivers in LMICs.

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

Materials and methods

The protocol of this review is duly registered (CRD42019118391) in the PROSPERO international prospective register of systematic reviews. Studies that explored the experiences of caregivers living with breast cancer patients in LMICs were searched.

Inclusion and exclusion criteria

All studies (quantitative studies, qualitative studies, and mixed-method studies) were conducted in diverse settings such as hospitals or communities published from January 2000 to March 2020. Other criteria for inclusion were (1) family caregivers of breast cancer patients aged 18 years and above, (2) providing non-paid caregiving services to breast cancer patients, (3) full-text published articles from LMICs (low-and-middle-income country was operationalized in this study as low-, lower-middle, and upper-middle-income economy based on the January 2020 World Bank list of analytical income classification of economies) [16], (4) reporting on family caregivers experiences, and (5) articles published in the English language.

Exclusion criteria

Studies were excluded from this review based on the following criteria: (1) focused on paid and formal caregivers such as healthcare professionals; (2) not published in the English language (due to limited availability of translation service to the authors); and lastly, (3) systematic reviews, abstracts, editorial reports, letters, conference articles, and gray literatures with no full-text published articles were excluded because they were not considered as scientific published articles.

Search strategy

A systematic review was conducted according to the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P). We conducted a comprehensive search of qualitative, quantitative, and mixed-methods literature that was published from January 2000 to March 2020 in the electronic databases, i.e., PubMed, CINAHL, Scopus, Web of Science, and PsycINFO, to retrieve all English language literature that contained information on family caregivers of breast cancer patients in low- and middle-income countries. As previously defined, studies were defined into “low-income,” “lower-middle-income,” and “upper-middle-income” countries as categorized by the World Bank [16]. Primary concepts such as “family caregiver,” “breast cancer,” “home care,” “low-and-middle-income-countries,” “experience,” “effect,” and “coping” and their Medical Subject Headings (MESH) were used for the search (Additional file 1: Table S1). The subject search and text word search were performed separately in all the databases 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 were searched from other sources such as Google Scholar as well as hand-searching the references of all included studies. This produced three additional articles from Google Scholar [17,18,19].

Literature screening

Following the literature search, citations were imported into Mendeley Desktop (version 1.19.4) reference manager for storage and screening of articles as well as the removal of duplicates. The remaining articles were then screened independently by titles and abstracts. Two reviewers (GK and KBM) screened all the citations that were identified from the search using standard systematic review procedures (inclusion and exclusion criteria). Any disagreement was resolved by discussion and consensus or by consulting a third reviewer (ABBM) where needed.

Quality appraisal or assessment tool

The quality of the selected studies was assessed independently by GK and KBM using the Mixed Methods Appraisal Tool (MMAT) version 2018 [20]. This tool has been developed to evaluate qualitative, quantitative, and mixed-method studies using two screening questions and four methodological criteria. The tool assesses the appropriateness of the aim of the study, adequacy and methodology, study design, participant recruitment, data collection, data analysis, presentation of findings, authors’ discussions, and conclusions [21]. Each question carries three possible responses: “yes,” “no,” or” can’t tell.” A star is assigned (four stars maximum possible score) 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% is regarded as strong [20].

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

Data extraction and analysis

Two reviewers (GK and KBM) independently extracted key characteristics from the included articles: bibliographic 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’ experiences, conclusions, and limitations of the study as described in Table 1. There was significant heterogeneity in the measurement of the outcomes of the eligible studies, making it impossible to pool data in a meta-analysis. Therefore, a narrative analysis or strategy was employed to synthesize the evidence.

Table 1 Summary of study characteristics and findings

Results

Literature search results

Only articles that had reported on family caregivers of breast cancer patients in low- and middle-income countries were included. The initial search returned 1781 records. A total of 430 duplicates were removed using the Mendeley Desktop (version 1.19.4). The remaining 1351 records were screened for titles and abstracts by the two independent reviewers (GK and KBM). We then excluded 1225 articles, and a full-text screening was done on the remaining 126 articles. Following the full-text screening, 107 were excluded because they did not meet the inclusion criteria as detailed in the PRISMA flow diagram. At the end of the screening procedure, 19 peer-reviewed citations remained for final inclusion in the review [3, 4, 6, 10, 15, 17,18,19, 23,24,25,26,27,28,29,30,31,32,33].

A schema illustrating the screening process is shown in Fig. 1.

Fig. 1

PRISMA flow diagram showing the systematic screening process

Methodological characteristics of included studies

The majority of the included studies (n = 15) used quantitative approaches [3, 10, 15, 18, 19, 23,24,25,26,27,28, 30,31,32,33] and 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 studies ranged from 7 caregivers [17, 29] to 384 caregivers [26]. The disease severity of the patients being cared for by the caregivers was only stated in 10 studies [4, 15, 24, 26, 28,29,30,31,32, 34].

Table 1 shows the summary of the included studies on caregivers’ experiences of women diagnosed with breast cancer.

Quality appraisal or assessment of included studies

Quality appraisal of the included works of literature using MMAT ranged from moderate (50%) to strong quality (100%). Two studies were rated as strong quality [4, 6]. Fifteen studies were scored as moderate-strong quality [15, 18, 19, 23,24,25,26,27,28,29,30,31,32,33, 35], and the remaining two studies [3, 17] were scored as moderate. None of the included studies was excluded based on their quality assessment score. The level of agreement of quality ratings between the two independent raters ranged from strong [kappa 0.79; 95% (0.4–1.2); p = 0.001] to excellent agreement [kappa 1.0; 95% (0.9–1.0); p =0.001]. Table 2 shows the quality assessment of the included studies.

Table 2 Quality appraisal of included papers and their Mixed Methods Appraisal Tool (MMAT) score

Findings on the caregivers’ experiences

The synthesis of the included articles showed that caregivers’ experiences fell into 10 main categories, namely, (1) caregivers’ motivation, (2) roles of family caregivers, (3) quality of life among caregivers, (4) physical burden of caregiving, (5) psychological burden of caregiving, (6) disruption in social life, (7) economic burden of caregiving, (8) need for support, (9) interventions for improving caregiver experience, and lastly (10) coping. These findings are described in the ensuing paragraphs.

Caregivers’ motivation

Three studies focused on the caregivers’ motivation for delivering care to women with breast cancer [4, 6, 30]. In the first study, caregivers cited a sense of responsibility and commitment as forms of motivation for their caregiving roles [6]. One Ghanaian study reported that family and sociocultural obligations prompted family members, especially females, to assume the caregiving role for women with breast cancer [4]. However, two studies conducted in Ghana [4] and China [30] reported that family-oriented cultural norms also prompted males such as spouse caregivers to assume the role of primary caregivers.

Roles of family caregivers

Four studies emphasized the role of caregivers in the management of breast cancer [3, 4, 26, 29]. Vahidi et al. [3] and Kusi et al. [4] suggested that caregivers played key roles in assisting patients with activities of daily living and the administration of medications. The studies also showed that caregivers played roles in assisting with treatment decision-making and symptom management [3, 4, 26, 29]. Moreno-González et al. [29] and Kusi et al. [4] also emphasized that caregivers managed specific symptoms such as breast wound and lymphedema, evaluation of symptoms, and management of pain. One study also reported that caregivers were the primary source of psychosocial, spiritual, and financial support for women with breast cancer [4].

Quality of life among caregivers

Seven articles gave an account of the quality of life of caregivers. The reports indicated that caregivers of women diagnosed with breast cancer had low levels of quality of life as compared to the general healthy population [3, 15, 23, 26, 28, 31, 33]. One study reported that the patient correlates of poor quality of life among family caregivers were advanced-stage breast cancer, poor functional status, frequent hospitalization, longer duration of breast cancer [15], lack of transportation [3], and high symptom burdens such as wound [31] and postmastectomy lymphedema [28]. Further, An et al. [23] also cited that higher levels of anxiety and depression were associated with poor quality of life among caregivers. Lastly, three studies highlighted that lack of formal support services that characterized developing countries also resulted in poor quality of life among caregivers [3, 10, 33].

Physical burden of caregiving

Four studies emphasized that caregivers reported a moderate to severe decline in physical health [6, 10, 17, 31]. Altered sleep patterns and hypertension were the frequently reported physical symptoms experienced by the caregivers [6, 10, 17]. Zhu et al. also highlighted that low family income and increasing age are predictors of physical burden among caregivers [31].

Psychological burden of caregiving

The majority of the included studies reported that psychological burden was the most frequent stressor that caregivers encountered [6, 10, 17, 25,26,27, 29,30,31,32,33]. According to Khanjari et al. [10], more than 70% of family caregivers experienced severe psychological impacts 6 months following breast cancer diagnosis and the assumption of the caregiving role. These studies also identified some conditions described as psychological burdens among the caregivers. Six studies cited depression as a common psychological burden among caregivers [10, 24, 30,31,32,33]. Studies cited that factors such as age [32], male gender, altered sleeping pattern [10, 17, 30, 31], longer duration of caregiving [24, 26, 32], lower educational level, not sharing caregiving responsibilities [32], and decreased functional status of patients [24, 32] were significantly associated with stressors such as depression among caregivers. Additionally, anxiety had also been identified as a common psychological distress that is experienced by caregivers [17, 25]. According to Din et al., about one third of caregivers suffered from anxiety-related disorders [25]. Furthermore, Din et al. [25] reported that longer caregiving duration and absence of shared caregiving were significantly associated with anxiety disorders. Moreover, four of the included studies reported that anxiety among caregivers was caused by the uncertainties of breast cancer outcomes, fear of recurrence, and poor financial supports available to caregivers [10, 17, 25, 26, 29]. Several emotional traumas such as fear, shock, anger, and sadness were also cited by caregivers in three studies [6, 26, 29].

Disruption in social life

Hashemi-Ghasemabadi et al. [6] reported that caregivers experienced a loss of normal life. This study also reported that caregivers experienced deteriorating relationships with other family members. Some caregivers cited that they felt isolated and lacked support from family and friends, which increased the burden associated with their caregiving roles [6].

Economic burden of caregiving

Eight papers examined the economic burden associated with caregiving around breast cancer [3, 6, 10, 15, 17, 24, 27, 29]. Two studies reported that caregivers usually decreased their working hours or lost paid jobs as a result of the caregiving role [17, 24]. It was also reported that even in conditions where caregivers still engaged in paid jobs, high treatment costs coupled with the absence of fully financed healthcare system that exists in LMICs created a high economic burden for family caregivers [15, 17, 24, 27, 29]. The synthesized findings also showed that lack of basic financial resources [15, 29] and inadequate income for meeting caregiving demands [3, 6, 10, 27] also resulted in financial burden for caregivers. Further, Gabriel and Mayers [27] suggested that given the extreme financial burden that is faced by caregivers in developing countries, educational interventions might be ineffective in improving the financial well-being among caregivers.

The need for support

The need for social support was the most frequent need that was cited by the caregivers across six included studies [6, 17, 25, 29,30,31]. Caregivers cited that they had not received adequate social support from their families and friends [17, 25, 31]. Specifically, caregivers described the need for sharing caregiving responsibilities with other family members and friends [6, 25, 30, 31].

Nonetheless, Yeung et al. [30] and Vahidi et al. [3] reported that seeking support from families and friends among spouse caregivers may result in increased emotional distress as it may be culturally interpreted as a sign of weakness and lack of self-confidence. Further, in three studies, caregivers also stressed the importance of support from the formal care systems to help them manage patients’ symptoms in the home setting [6, 17, 29].

Interventions for improving the caregiver’s experience

Three articles examined interventions to support family caregivers [18, 19, 27]. Largely, all the studies reported significant improvement in the quality of life after psycho-educational intervention. Particularly, the improvements in caregivers’ quality of life were related to measures such as the emotional aspect of caregiving. In the first study [27], it was reported that caregivers were given psycho-educational interventions to improve their quality of life. Caregivers in the interventional group received 6 weeks of information about adjustment to the role of family caregivers and strategies to deal with the emotional aspects of caregiving. This quasi-experimental study reported that caregivers in the interventional group reported better quality of life after the 6 weeks [27]. It was reported that the provision of informational support aided in decreasing caregiving burden among the caregivers. However, the intervention did not affect the financial well-being of caregivers.

The second education intervention study [18] examined the effect of a supportive educational program on the caring burden and quality of life of family caregivers. The intervention group in this study reported a clear increase in caregivers’ knowledge about breast cancer management, physical, psychological, spiritual, and environmental dimensions of health. Lastly, the third study [19] evaluated the effect of an educational and telephone follow-up on caregiver burden. Results from this showed that caregiver burden decreased significantly among the intervention group.

Coping

Three of the included studies reported on coping strategies used by family caregivers [10, 17, 29]. These studies reported that religious coping such as putting one’s faith in God was vital in improving the quality of life among caregivers [10, 17, 29]. Two of the studies further reported that caregivers reported that being religious provided them with meaning in their caregiving roles [10, 17]. Further, one study also showed that previous knowledge on breast cancer aided caregivers to cope effectively in their caring role [29].

Discussion

In this systematic review, key evidence on family caregivers of women diagnosed with breast cancer in LMICs has been highlighted. Reviews focusing on caregivers of women with breast cancer in LMICs are missing in the literature. The current systematic review, therefore, addressed this gap by adding to the knowledge in this area.

The current review demonstrated that family members, including male spouses, assumed the caregiving role for women diagnosed with breast cancer. Based on this finding, future research using comparative study designs should be conducted to examine how breast cancer caregiving differs among male and female caregivers. This systematic review further highlighted the roles that are played by family caregivers in providing physical, spiritual, emotional, and financial support to women with breast cancer in LMICs [3, 4]. Furthermore, studies in this review highlighted the significant role played by caregivers in symptom management [3, 4, 26]. Despite this important finding, only one of the included studies [4] provided information on how symptoms such as pain, lymphedema, and breast wound are managed in the home by the caregivers. The level of empirical evidence addressing how family caregivers manage symptoms in LMICs where there is evidence of limited formal support structures needs further exploration using qualitative methods.

The review identified a range of burdens that are encountered by caregivers. Caregivers reported challenges such as fear, depression, and hypertension [6, 25, 31]. Financial challenges such as lack of transportation, loss of a paid job, and high treatment cost were also fundamental sources of stress for caregivers across several studies in this review [3, 26, 27, 29]. This finding is expected, considering the financial burden that such caregiver roles put on families. This is because these caregivers are already overburdened by the lack of formal support services and poor economic status in LMICs. Therefore, these identified challenges encountered by the caregivers in LMICs in their caregiving roles represent areas in the caregivers’ lives that need to be addressed in policy formulation.

Also, it was reported that disease severity and declining functional status impacted the quality of life of the caregivers [3, 15, 26, 31]. As such, how the caregivers’ challenges change according to the progression of breast cancer is an important topic for further exploration in future longitudinal studies.

The findings of this review also showed that educational and psychological interventions could prove as relevant tools in improving the wellbeing of family caregivers [18, 19, 27]. Accordingly, it would be important for future study to focus on the development of educational and supportive interventions for family caregivers to help address their challenges.

One of the most striking gaps observed in this systematic review is the lack of qualitative studies on the caregivers of women with breast cancer in LMICs. Only four studies explored the experiences and challenges that were faced by the caregivers in their caregiving roles using qualitative designs [4, 6, 17, 29]. This finding therefore offers opportunity for further qualitative works into breast cancer caregiving in LMICs. This method of enquiry will produce a rich, detailed, and rigorous data on the phenomenon by allowing participants to naturally share their lived experiences in their setting.

Lastly, there are a few studies that explored other aspects of caregiver wellbeing such as disruption in social life, coping measures, and intervention for caregivers [6]. Therefore, a need exists to focus future studies on these areas of the caregiver wellbeing.

Strengths and limitations

Some limitations of this systematic review are worth noting. First, this review found a relatively small number of relevant studies. With a publication period from January 2000 to March 2020, only 19 studies that had reported on family caregivers of breast cancer patients were identified and synthesized. This may hinder the generalizability of the research findings. However, with expanded attention to breast cancer caregivers in LMICs, this review can drive future research and also inform policy. Further limitation is language restriction. Non-English language articles were excluded due to the limited capacity to access professional language services. This is challenging since family caregiving in breast cancer is socio-cultural and context-specific. Excluding articles in non-English languages may have resulted in a limited understanding of the phenomenon under review and therefore poses a risk of bias in extrapolating the results to a broader population. Further, not considering studies that had been published in the developed countries might have resulted in the exclusion of relevant studies.

In addition, it was not feasible to synthesize the results in a meta-analysis as the included studies were clearly heterogenous. For instance, the included studies used different methods such as correlational studies, cross-sectional designs, and self-reported data to obtain caregivers’ reported experiences. It was however decided a priori to include all studies regardless of their study design as the aim of this study was to investigate the diversity of studies reporting on caregivers of women living with breast cancer in LMICs, thus obtaining a broad perspective of the phenomenon under review.

The strength of this systematic review includes the use of an MMAT tool for the quality appraisal by two independent reviewers. Also, we are the first to systematically map evidence and report on the experiences of family caregivers of breast cancer patients in low- and middle-income countries.

Conclusions

The incidence of breast cancer is increasing in LMICs. This has serious implications for family caregivers. The burden associated with the caregiving role is further amplified by limited availability and access to palliative services and formal structures to support caregivers in their caring roles. Also, due to factors such as financial constraints, there may be a lack of social protection policies for breast cancer caregivers. The high psychological and financial burdens associated with caregiving in developing countries create the need to raise awareness about the neglected needs of family caregivers.

Enhanced support for caregivers should be highlighted as a priority in LMICs. There are numerous gaps in policy and education about caregivers that need to be addressed. The available evidence in this review does not comprehensively address how caregiver challenges can be reduced. Therefore, further research is needed to generate empirical data to inform an evidence-based approach to addressing family caregivers’ challenges in LMICs.

Contribution of the paper

What is known about this topic?

• Breast cancer is a common malignancy among women in LMICs.

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

What this paper adds:

• Evidence on family caregivers of breast cancer patients in LMICs.

• Identify the limited evidence and the existing gaps in research related to breast cancer caregiving that urgently needs to be addressed.

• Family caregivers play a key role in providing home care for breast cancer patients in LMICs.

• Family caregivers experience challenges in their caregiving role.