Table 1 Summary of study characteristics and findings

Vahidi et al. (2016) [3]

Iran

Determine factors associated with caregiver burden among primary caregivers of women with breast cancer

Descriptive correlation study

150 primary caregivers; caregivers mean age 39.60 years; 77 (51.3%) were males

Caregivers assisted with activities of daily living, administering medication, symptom management, and financial support. Higher caregiver burden was associated with increasing assistance with activities of daily living, low educational level, gender, and poor financial status

Caregivers must be provided with comprehensive care needs support. Primary caregivers need to be supported financially by relevant organizations, such as government agencies and charities. Other factors such as dedicating a place for caregivers in the clinic to receive care skills training from expert nurses can be effective

Cross-sectional studies do not show the difference in burden in response to cancer progression in the patient; therefore, longitudinal studies are recommended

Gabriel, Aluko and Okeme (2019) [15]

Nigeria

Impact of caregiving burden on the informal caregivers of women with breast cancer

Descriptive study

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

Determinants of high caregiver burden were payment type for treatment, family income, relationship to the patient, social support, and self-efficacy

Strategies to improve self-efficacy such as additional training, follow-up, peer education, and support groups for caregivers might decrease the caregiver burden

Use of convenience sampling making it difficult to identify causal relationships

Zhu et al. (2014) [31]

China

To assess the quality of life in male spouse caregivers

Cross-sectional study

243 spouse caregivers. Mean age = 49.5 years

Decreasing patient functional status was significantly associated with poor quality of life among caregivers. High family income and longer sleeping time increased the quality of life among caregivers

Attention should be paid to male spouse caregivers as a separate group. Nurses can understand the status of caregiver burden and QOL by assessing both patients and spouses. The mental health of spouse caregivers was disrupted more seriously than the physical health

The study focused on spouse caregivers and hence cannot be generalized for other non-spousal caregivers

Hashemi-Ghasemabadi et al. (2016) [6]

Iran

Transition to the new role of caregiving for families of women with breast cancer diagnosis

Qualitative descriptive exploratory study

23 caregivers. Mean age = 37.5 years. 69.6% were females and 30.4% men

Emerged themes:

•“Grasping a new situation without preparation”

•“Perceived inefficiency”

•“Infinite absence”

•“Abandoned in the role”

Caregivers cited that they were unprepared for their new role and did not have the necessary skills and knowledge to manage breast cancer and its related symptoms. Caregiving was also described as a time-consuming role which competed with other family roles and responsibilities.

By understanding their experiences in the transition to the new role, it is possible to provide detailed information for designing evidence-based healthcare interventions and comprehensive family-centered care program. Also, interventions can be tailored to the objectives and resource limitations, for the support and resolution of the challenges of caregivers to decrease the negative consequences of caregiving

Study could not be generalized because it is a qualitative study. Provided limited information on coping strategies

Sahadevan et al. (2019) [26]

India

Identify the determinants of depression among caregivers of patients with breast cancer

Cross-sectional survey

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

Higher financial responsibilities, being a spousal caregiver are important determinants of depression among caregivers

Cancer specialists in treatment team need to be aware of the need for psychological assessment of principal caregivers. They should be trained to pick up depressive symptoms and its associated risk factors at the earliest and should be offered services to the needful. This approach ultimately improves the outcome of cancer treatment

This cross-sectional survey was a hospital-based study and may not be generalizable to all caregivers in India

Jaafar et al. (2014) [24]

Malaysia

To examine the rates of clinical depressive disorders in caregivers during breast cancer treatment

Cross-sectional study

130 caregivers comprising of spouses (46.9%), children (40.0%), and siblings (13.1%)

Depressive disorders were related to low educational status of caregivers and high duration of caregiving

This finding gives clues to intervening depression among the caregivers by providing support in the form of respite care to the caregivers and improving engagement of the caregivers by the health care providers. The results should increase the health care providers’ awareness of the vulnerability of this population and discard a patient-centric approach of treatment

Data on coping mechanism were missing in this study. The study was conducted in a single facility which might limit generalizability to similar population

Gabriel and Mayers (2019) [27]

Nigeria

To assess the effectiveness of a psychosocial intervention in reducing caregiver burden among caregivers

Quasi-experimental study

108 caregivers; intervention group (54); control group (54). Caregivers were primarily spouse (30.6%), parent (15.7%), sibling (17.6%), child (21.3%), and friend (14.8%)

Primary caregivers who received the psychosocial intervention reported significant decrease in burden at 6 weeks and 12 weeks. Further, the psychosocial intervention also improved the overall quality of life of caregivers

The need for effective advocacy on the issue of caregiver burden is vital. Relevant stakeholders in the healthcare sector, especially in palliative care, should conduct advocacy campaigns to promote the culture of caring and support for the person with cancer and the caregiver

Non-randomized deign was used to recruit participants. Psychosocial intervention did not address the subjective aspect of the caregiver burden

Giray and Akyuz (2019) [28]

Turkey

To assess relationships between caregiver burden, quality of life, arm disability, grip strength, and lymphedema symptoms in patients with postmastectomy lymphedema

Prospective cross-sectional study

52 caregivers. Mean age = 48.46 years. 14 (26.9%) were females and 38 (73.1%) were males

Caregiver burden was associated with arm disability and quality of life of these patients. Arm disability affects caregiver burden and quality of life in these patients. Arm disability was higher in patients at stage 3 lymphedema than patients at milder stages

Arm disability should be diagnosed and treated to improve caregiver burden and quality of life

This was an observational study using a convenience sample. Comparison of caregiver burden before and after lymphedema development and treatment can more enlighten the importance of caregiver burden in the management of patients with postmastectomy lymphedema

Moreno-Gonzalez et al. (2019) [29]

Mexico

To describe the experience of family care of women with breast cancer during treatment from the perspective of caregivers

Qualitative study

Seven caregivers (3 men and 4 women)

Male caregivers stated that the absence of a breast did not interfere with the perception of their femininity or sexual attractiveness. Caregivers experienced fear and despair for not knowing how to alleviate women symptoms. Also, caregivers experienced fear of the unknown and sometimes anger. They also looked for strategies to maintain their emotional balance. Female caregivers living this experience expressed a greater perception of the risk of suffering from breast cancer, which favored their self-care by knowing about the timely detection

The experience of caregivers of women with breast cancer generated profound changes in them through the discovery of their reach and limitations in difficult situations

The study leaves aside different contexts and events such as rupture between couple and family disintegration that may prevail

Wulandari et al. (2017)

Indonesia

Determine the experience of stress and adaptation of breast cancer patient’s family

Qualitative method

7 male caregivers

Caregivers cited that they experience stressors related to difficulty in managing of the disease and the financial needs of the patient. Caregivers further reported that financial problem became a stressor from the beginning until the end of the breast cancer treatment. Components of caregiver coping mechanism consisted of strategies such as emotional support from health professionals, prayer, and gratitude

The experience of stress and adaptation of the family of breast cancer patients is a continuous stage. Continued coping such as support from professional nurses may be needed to minimize the stress and improve adaptation of family caregivers

Caregivers in this study was small. Study did not explain comprehensively measures that were undertaken to ensure trustworthiness of the study

Bahrami and Farzi (2014) [18]

Iran

Determine the effect of a supportive educational program on the caregiving burden and quality of life in the family caregivers of women with breast cancer

Two‑group two‑step before–after clinical trial

64 family caregivers. Mean age (control group) = 38.97

Mean age (experimental group)

The study implemented a supportive educational program to a group of caregivers. After the intervention has been implemented, the results showed that in the experimental group, the mean score of physical, mental, spiritual, and environmental domains and overall quality of life in the family caregivers was significantly increased compared to the control group. Further, in the experimental group, the mean score of caring burden among the caregivers was significantly decreased compared to the control group

The findings of the study suggested that supportive educational program can improve physical, psychological, spiritual, and environmental domains and overall quality of life. It can also decrease the caring burden in the family caregivers of women with breast cancer

Small sample size was used

Mahadevan et al. (2013) [32]

Malaysia

To determine the proportion of stress among the caregivers of breast cancer patients receiving oncologic treatment at Kuala Lumpur Hospital and to determine the predictors of stress among the caregivers

A cross-sectional study

130 caregivers with mean age of 42.8 ± 14.5 years

Generally, caregivers had higher levels of stress. Approximately 16% of caregivers felt emotionally strained and 26% acknowledge that taking care of the patient is hard on them emotionally. In addition, caregivers felt less in control of their lives. Caregivers who looked after older patients were less likely to be stressed

There should be awareness among medical personnel about the high likelihood of stress among the family caregivers of breast cancer patients and a heightened sensitivity to the caregivers’ emotional condition. Caregivers should have easy access to mental health services. There should be respite care facilities in order to relieve the caregivers from constant caregiving burden and stress

The study was cross-sectional in design, whereby being conducted at one point of time; no causal relationship can be inferred between the outcomes and the variables. The application of non-random sampling method within a convenience samples frame could create sampling bias, resulting in over- or under-representation of certain members of the study population

Yeung et al. (2018) [30]

China

This study aimed to examine the experience of guilt and its correlates among Chinese husbands of women with breast cancer

A cross-sectional survey

176 husbands caregivers with mean age of 50.22 years

Lower endorsement of the “masculinity strength” gender-role norm, and higher caregiving burden and social support seeking were associated with higher caregiving guilt. Unexpectedly, higher marital satisfaction and less protective buffering were associated with higher caregiving guilt. Younger husband caregivers in our sample were more likely to report higher guilt. Also, caregiving burden was associated with caregiver guilt. Also, protective buffering and caregiver guilt was conditional to caregiver’s level of marital satisfaction

The new findings and complex interplay between caregivers’ characteristics (including endorsement of male gender-role norms and marital satisfaction) and coping strategies (protective buffering and seeking social support) in predicting guilt imply that individual and cultural characteristics may change the effectiveness of specific coping strategies in cancer caregivers’ well-being

Caregivers were recruited from two hospitals. Hence, sample may not be representative of the total population of caregivers of breast cancer patients

Heidari Gorji et al. (2012)

Iran

To examine the correlates of depression in relation to quality of life among breast cancer caregivers

A cross-sectional descriptive design

Findings were demonstrated that high percent of caregivers were afflicted by mild and moderate depression. The results showed that 42 and 11% reported moderate and low quality of life, respectively. The study demonstrate that psychological issues have a significant impact on quality of life

The study demonstrate that psychological issues have a significant impact on quality of life. Additionally, help and attention to caregivers would be beneficial in improving quality of life of all family of patients

This is a cross-sectional study; hence, results may not be generalizable to all caregivers in Iran

Yuanyuan An et al. (2019)

China

To identify the influence of family caregiver’s burden on breast cancer patient’s QoL and possible mediators

A cross-sectional design

382 caregivers

Higher level of family caregiver’s burden was associated with higher levels of patient’s anxiety and depression

Given the important role of family caregiver’s burden, it should be targeted by the intervention aiming to improve breast cancer patients’ QoL and well-being

The data were cross-sectional, which precludes conclusions regarding causation and the direction of relationship among variables. Second, the findings are only generalizable to the population studied

Nejad et al. (2016)

Iran

Determine and compare the caregiver strain index scores of breast cancer informal caregivers, before and after a patient-caregiver educational and telephone follow-up program

Experimental study design

60 caregivers

Mean age > 30 (28.3 years)

30–50 (43.3 years)

< 50 (28.3 years)

The mean caregiver strain score of the intervention group was 8.3 ± 2, and it dropped to 4.8 ± 2.3 post-intervention

Caregiver burden decreased significantly in the intervention group after the patient-caregiver education and follow-up program (P < 0.001)

The intervention period was relatively short, thus limiting the generalizability of the results

Din et al. (2017) [25]

Malaysia

To determine the anxiety disorders specifically focusing on the family caregivers of breast cancer patients

A cross-sectional study

130 caregiver-patient dyads

The study found that more than a 10th (11.5%, n = 15) of the family members who were primarily involved in caring for breast cancer patients had anxiety disorders.

Specifically, 8 caregivers (6.1%) had generalized anxiety disorder, 6 were (4.6%) diagnosed to have panic disorder, and one (0.8%) had social phobia associated with both the patients’ type of treatment and non-shared caregiving

A multidisciplinary management approach should be extended to those at risk which would directly and inadvertently optimize the treatment care for patients with breast cancer

It was cross-sectional in design that the direction of the factors and the risk factors of anxiety disorders could not be established. The small sample size limited the power of the study to detect any other factors particularly involving the caregiving process such as duration of care that could have significance to the anxiety disorders

Khanjari et al. (2014) [35]

Iran

To explore how family caregivers of women with breast cancer in Iran describe the areas in life which are important to their quality of life (QoL) and to determine which areas in life that are influenced by having a family member with breast cancer

Descriptive and prospective cross-sectional study

88 family caregivers consisted of 29 (33%) men and 59 (67%) women with mean (SD) 41.1 (13.9).

A majority of family caregivers reported a high psychological impact described as experiences of shock and stress, feeling sadness and depressed, fear and anxiety, and having disturbed sleep. Furthermore, family caregivers stated other aspects which may have a negative impact on mental and emotional well-being but not covered, namely, descriptions of fear of recurrence, uncertainty of outcome, and worry about future and death. Many family caregivers reported a change in their relationship with their sick relative and that the disease tended to amplify existing problems. Religious aspects such as feeling a stronger connection to God as well as optimism and hope were expressed to be enhanced for some of the family caregivers

Family caregivers need support in dealing with the psychological strain related to the situation by acquiring information about cancer and its treatment and in how to communicate about their own concerns with their relative with cancer. Moreover, education and interventions from health care professionals would be beneficial in improving QoL for the families of patients

Sample size of the family caregivers is a limitation to the study. The use of semi-structured interviews may not be as adequate to capture a phenomenon as more in-depth interviews

Kusi et al. (2020) [4]

Ghana

To explore the caregiving motivations and experiences of family caregivers of patients living with advanced breast cancer

Exploratory descriptive phenomenological approach

15 caregivers. 7 were males while 8 were females with age range from 25 to 73 years.

Caregivers were involved in bathing, grooming, and cooking for patients. Their experiences further include symptom management such as the management of pain, lymphedema, wound, and evaluation of symptoms. Caregivers were the main providers of emotional support by offering patients with words of encouragement. They also experience financial burden by providing out-of-pocket money for treatment costs and other related non-medical costs

There is the need for home-based support programs to assist caregivers in their caring role especially in the area of symptom management and direct governmental social intervention programs (e.g., transportation to treatment facilities and drugs for patients) to resource-limited caregiving families of women with advanced breast cancer. The National Health Insurance Scheme should be expanded to fully cover breast cancer treatment to women and their family caregivers

The findings cannot be generalized based on the sample selection (caregivers of only advanced breast cancer patients). The study was limited to a single site