Caregiver burden and quality of life among family caregivers of patients with cancer in Babylon, Iraq: a cross-sectional study

¹Department of Psychological and Mental Health Nursing, College of Nursing, University of Baghdad, Baghdad, Iraq, ²Department of Adult Nursing, College of Nursing, University of Baghdad, Baghdad, Iraq

^&Corresponding author
Haider Mohammed Majeed, Department of Adult Nursing, College of Nursing, University of Baghdad, Baghdad, Iraq

Introduction    

Cancer is a major public health challenge worldwide and remains one of the leading causes of morbidity and mortality [1]. According to recent global estimates, approximately 20 million new cancer cases and 9.7 million cancer-related deaths occurred in 2022, highlighting the substantial burden of the disease on individuals, families, and healthcare systems. Advances in cancer treatment and the increasing shift toward outpatient and home-based care have resulted in greater reliance on family caregivers, who play a crucial role in supporting patients throughout diagnosis, treatment, and survivorship [2]. Family caregivers, also referred to as informal caregivers, are individuals who provide unpaid physical, emotional, and practical support to relatives or loved ones living with cancer or other chronic illnesses in home and community settings.

Family caregivers often undertake a wide range of caregiving responsibilities, including symptom monitoring, medication management, assistance with activities of daily living, decision-making, emotional support, and coordination of healthcare services [3]. As the disease progresses, caregiving demands frequently increase, placing substantial physical, psychological, social, and financial strain on caregivers. These responsibilities may disrupt caregivers' daily routines, employment, family relationships, and social participation, thereby increasing caregiver burden and adversely affecting their overall well-being [4].

Caregiver burden is a multidimensional concept that encompasses the physical, emotional, social, and financial difficulties experienced while providing care [5]. According to the stress-process model of caregiving, increasing caregiving demands may exceed caregivers' available personal and social resources, leading to psychological distress, reduced coping capacity, and poorer quality of life. High levels of caregiver burden have been associated with fatigue, anxiety, depression, social isolation, and diminished physical and mental health [6]. Consequently, quality of life has become an important indicator of caregiver well-being and is increasingly recognized as a key outcome of family caregiving.

Previous studies have demonstrated that family caregivers of patients with cancer frequently experience moderate to high levels of caregiver burden accompanied by impaired quality of life [7]. For example, a study conducted in Turkey reported that cancer caregivers experienced substantial caregiving burden and reduced physical and psychological quality of life [8]. Similar findings have been reported in several countries, indicating a significant association between caregiver burden and quality of life among caregivers of patients with cancer.

However, the magnitude and nature of this relationship may vary across healthcare systems, cultural contexts, family structures, and the availability of formal support services [9]. In Iraq, family members are the primary source of care for patients with cancer, and formal caregiver-support services remain limited. Despite the important role of family caregivers in cancer care, evidence regarding caregiver burden and its association with quality of life in Iraqi oncology settings remains scarce [10]. Understanding this relationship is essential for identifying caregivers at risk of adverse outcomes and for developing targeted interventions and support programs to improve caregiver well-being and sustain high-quality patient care. This study aimed to assess caregiver burden and quality of life and to examine the association between these variables among family caregivers of patients with cancer attending the Babylon Oncology Center in Babylon, Iraq.

Methods     

Study design and setting: an analytical cross-sectional study was conducted to assess caregiver burden and quality of life and to examine the association between these variables among family caregivers of patients with cancer. The study was carried out at the Babylon Oncology Center, a tertiary oncology referral center in Babylon Governorate, Iraq, between September 8, 2025, and February 2, 2026. The study was reported in accordance with the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines.

Study participants and sampling: the study population consisted of family caregivers of patients diagnosed with cancer and receiving treatment at the Babylon Oncology Center during the study period. A primary caregiver was defined as the family member who assumed the greatest responsibility for providing physical, emotional, and practical care to the patient. Participation was entirely voluntary, and participants were informed of their right to withdraw from the study at any stage without penalty. To ensure confidentiality and anonymity, no identifying information was recorded on the questionnaires. All collected data were stored securely and were accessible only to the research team. The data were used exclusively for scientific research purposes

Family caregivers aged 18 years or older who were identified as the primary caregiver and agreed to participate were eligible for inclusion in the study. Professional caregivers and individuals who declined participation were excluded. A non-probability purposive sampling technique was used to recruit participants. Eligible caregivers attending the oncology center during the data collection period were approached and invited to participate. Caregivers who declined participation or did not meet the eligibility criteria were not included in the study. The sample size was determined using the Raosoft sample size calculator based on a 95% confidence level, a 5% margin of error, and a response distribution of 50%. A total of 150 family caregivers were recruited and included in the final analysis.

Study variables: the primary study variables were caregiver burden and quality of life. Caregiver burden was measured as the total score obtained on the Zarit Burden Interview Short Form (ZBI-12), whereas quality of life was measured as the total score obtained on the FAMQOL. Sociodemographic variables, including age, gender, marital status, educational level, and place of residence, were also collected and analyzed. Sociodemographic variables, including age, gender, marital status, educational level, and place of residence, were collected because they may influence caregiver burden and quality of life and were considered potential confounding variables during interpretation of the study findings. The study focused primarily on caregivers' sociodemographic characteristics, caregiver burden, and quality of life. Clinical and caregiving-related variables, such as the caregiver's relationship to the patient, duration of caregiving, daily caregiving hours, cancer type and stage, treatment modality, and patient functional status, were not collected because they were beyond the predefined scope of the study.

Data collection instruments: data were collected through face-to-face interviews using three instruments. The first instrument was a socio-demographic questionnaire developed by the researchers to collect information regarding participants' age, gender, marital status, educational level, and place of residence. The second instrument was the 12-item Zarit Burden Interview (ZBI-12), developed by Zarit and colleagues. The instrument consists of 12 items rated on a five-point Likert scale ranging from 0 (never) to 4 (nearly always), yielding a total score between 0 and 48, with higher scores indicating greater caregiver burden. For descriptive analysis, total scores were categorized into three levels according to the predefined scoring criteria adopted for this study. These categories were used solely for descriptive reporting and do not represent the standard clinical interpretation of the ZBI-12. The third instrument was the FAMQOL, developed by Nauser et al. [11]. The scale consists of 16 items rated on a five-point Likert scale, yielding total scores ranging from 16 to 80. Higher scores indicate better quality of life. For descriptive purposes, quality-of-life scores were categorized according to the predefined scoring criteria adopted in this study.

Validity and reliability: the Zarit Burden Interview Short Form (ZBI-12) and the Family Caregiver Quality of Life Scale (FAMQOL) are standardized instruments with established validity and reliability in previous studies. Because the study was conducted among Arabic-speaking participants, both instruments were translated into Arabic using a forward-backward translation procedure. Two bilingual experts independently translated the original English versions into Arabic, and a separate bilingual translator performed backward translation into English. Any discrepancies between the original and back-translated versions were reviewed and resolved by the research team to ensure conceptual equivalence. To establish cultural appropriateness, the Arabic versions of the instruments were reviewed by a panel of experts in nursing, oncology nursing, and research methodology. The panel evaluated the relevance, clarity, comprehensibility, and cultural suitability of each item for the Iraqi context. Minor linguistic modifications were made based on the experts' recommendations without altering the original meaning of the items. The internal consistency of the instruments was assessed using Cronbach's alpha coefficient. Based on the study data, the Cronbach's alpha values were 0.87 for the ZBI-12 and 0.91 for the FAMQOL, indicating good internal consistency and reliability for use among Iraqi family caregivers.

Bias control: several measures were implemented to minimize potential sources of bias. Selection bias was reduced by applying uniform eligibility criteria and recruiting all eligible family caregivers attending the oncology center during the study period using the same recruitment procedure. Information bias was minimized through the use of standardized interviewer-administered questionnaires and consistent data collection procedures for all participants. Because validated instruments (ZBI-12 and FAMQOL) were used, measurement bias was minimized. Participants were assured of anonymity and confidentiality and were informed that participation was voluntary, thereby reducing the likelihood of social desirability bias. Although potential confounding variables, including age, gender, marital status, educational level, and place of residence, were collected, adjustment for confounding was not performed because the study objective was limited to examining the bivariate association between caregiver burden and quality of life.

Data analysis: data were coded, entered, cleaned, and analyzed using the Statistical Package for the Social Sciences (SPSS) version 26 (IBM Corp., Armonk, NY, USA). Descriptive statistics, including frequencies, percentages, means, and standard deviations, were used to summarize participants' sociodemographic characteristics and study variables. Before conducting inferential analyses, the assumptions for Pearson's correlation were evaluated. The normality of continuous variables was assessed using visual inspection of histograms and normal Q-Q plots together with the Shapiro-Wilk test, while the linearity of the relationship between caregiver burden and quality of life was examined using scatterplots. Pearson's correlation coefficient (r) was used to assess the strength and direction of the association between caregiver burden and quality of life. The correlation coefficient was interpreted as the effect size. Statistical significance was assessed using two-tailed tests, and a p-value of less than 0.05 was considered statistically significant. All completed questionnaires were reviewed immediately after each interview to ensure completeness. The questionnaires were subsequently checked for accuracy before coding and data entry, and the electronic dataset was verified against the original questionnaires. No missing data were identified; therefore, all 150 questionnaires were included in the final statistical analysis.

Ethical considerations: ethical approval for the study was obtained from the Research Ethics Committee of the College of Nursing, University of Baghdad, Iraq (Approval No. 03/11/2025-1). Before data collection, participants received a detailed explanation of the study objectives and procedures, and written informed consent was obtained from each participant.

Results     

General characteristics of the study population: during the study period, family caregivers of patients with cancer attending the Babylon Oncology Center were screened for eligibility. Caregivers who met the inclusion criteria and provided written informed consent were enrolled in the study. A total of 150 family caregivers completed the questionnaires, and all responses were complete; therefore, all participants were included in the final statistical analysis. The socio-demographic characteristics of the participants are summarized in Table 1. The mean age of caregivers was 38.53 ± 12.50 years, and the largest proportion belonged to the 20-29-year age group (29.3%). Most participants were male (71.3%), married (62.0%), had a diploma or higher educational qualification (42.7%), and resided in urban areas (54.0%) Table 1.

Caregiver burden and quality of life: the distributions of caregiver burden and quality of life are presented in Table 2 and Table 3, respectively. Based on the predefined scoring criteria, most caregivers (73.3%) were classified within the highest caregiver-burden category, whereas 24.7% and 2.0% were classified within the moderate and lowest burden categories, respectively. Regarding quality of life, most caregivers (74.0%) reported a fair quality of life, while 18.0% reported good quality of life and only 8.0% reported poor quality of life.

Association between caregiver burden and quality of life: the relationship between caregiver burden and quality of life is presented in Table 4. Prior to analysis, the assumptions for Pearson's correlation were evaluated and found to be satisfactory. Histograms and normal Q-Q plots indicated approximate normality of the continuous variables, while scatterplot inspection confirmed a linear relationship between caregiver burden and quality of life. Pearson's correlation analysis demonstrated a statistically significant association between caregiver burden and quality of life (r = 0.282, p < 0.001). According to Cohen's criteria, the observed correlation represents a small effect size, indicating a statistically significant but weak positive association between the two variables.

Discussion     

This study aimed to assess caregiver burden and quality of life and to examine the association between these variables among family caregivers of patients with cancer attending the Babylon Oncology Center in Iraq. The findings showed that most caregivers were classified within the highest caregiver-burden category, while the majority reported a fair quality of life. Furthermore, a statistically significant association was identified between caregiver burden and quality of life [12]. These findings emphasize the importance of recognizing family caregivers as an essential component of comprehensive cancer care and highlight the need to routinely assess caregiver outcomes alongside patient outcomes in oncology practice [13].

The caregiver-burden pattern observed in this study is generally consistent with previous research indicating that family caregivers of patients with cancer commonly experience substantial caregiving demands [14]. Mishra et al. [7] reported that most caregivers experienced low-to-moderate burden, whereas severe burden was less common, a pattern broadly comparable to the present findings. Similar observations have also been reported in studies involving caregivers of patients with advanced cancer, suggesting that caregiver burden is influenced by disease severity, caregiving responsibilities, available support systems, and access to healthcare services. In the present study, the relatively small proportion of caregivers classified within the most severe burden category may partly reflect the relatively high educational attainment of participants and the predominance of urban residence, both of which may facilitate access to healthcare information, treatment services, and informal social support [15,16]. However, these factors were not examined analytically and therefore should be interpreted cautiously.

Most caregivers in the present study reported a fair quality of life, whereas only a small proportion reported poor quality of life [17]. Although this finding differs somewhat from several previous studies reporting poorer quality of life among caregivers of patients with cancer, differences across studies are likely attributable to variations in healthcare systems, cultural norms, family structures, disease characteristics, and caregiver demographics [18]. In Iraq, family caregiving is traditionally regarded as a familial responsibility, and family members frequently provide extensive physical, emotional, and practical support with limited formal caregiver-support services. Strong family cohesion and cultural expectations regarding caregiving may help preserve aspects of perceived quality of life despite considerable caregiving demands [19]. Conversely, limited access to structured psychosocial support and community-based caregiver services may increase caregivers' reliance on personal and family coping resources, thereby influencing both caregiver burden and quality of life.

A statistically significant association was observed between caregiver burden and quality of life, supporting previous evidence that these constructs are closely related among family caregivers of patients with cancer [20]. Because this study employed a cross-sectional design and only bivariate statistical analysis, the findings should not be interpreted as demonstrating a causal relationship. The observed association may have been influenced by socio-demographic characteristics or other unmeasured caregiving and clinical factors [21]. Nevertheless, the findings reinforce the importance of simultaneously assessing caregiver burden and quality of life when evaluating caregiver outcomes in oncology settings and suggest that caregiver well-being should be considered an integral component of family-centred cancer care [22].

These findings have important implications for clinical practice and healthcare policy. Routine assessment of caregiver burden and quality of life may facilitate the early identification of caregivers requiring additional support and enable timely referral to appropriate educational, psychological, and social services [23]. Although the present study did not evaluate specific interventions, previous research suggests that caregiver education, psychoeducational programs, counselling, caregiver-training initiatives, and psychosocial support may improve caregivers' well-being and reduce caregiving-related difficulties [24]. Healthcare systems should therefore recognize family caregivers as key partners in cancer care and consider integrating structured caregiver-support services into routine oncology practice to strengthen family-centred care [25,26].

This study provides important evidence regarding caregiver burden and quality of life among family caregivers of patients with cancer in an Iraqi oncology setting by using standardized assessment instruments and achieving complete data collection without missing responses. Nevertheless, several limitations should be considered. The cross-sectional design precludes conclusions regarding causality, while the single-centre setting and purposive sampling may have introduced selection bias and limited the representativeness and generalizability of the findings. Data were collected using self-reported questionnaires, which may be subject to recall and social desirability bias. Furthermore, only bivariate analysis was performed, and potentially important caregiver- and patient-related variables, including caregiving duration, caregiving intensity, caregiver relationship to the patient, cancer type, disease stage, treatment modality, and patient functional status, were not included, preventing identification of independent predictors and increasing the possibility of residual confounding. Future multicenter longitudinal studies using probability-based sampling, comprehensive caregiver and patient clinical data, and multivariable statistical analyses are needed to better understand determinants of caregiver burden and quality of life and to evaluate interventions designed to improve caregiver outcomes.

Conclusion     

This study found that most family caregivers of patients with cancer reported a fair quality of life, while the majority were classified within the poor caregiver-burden category according to the adopted scoring criteria. A statistically significant relationship was identified between caregiver burden and quality of life among family caregivers of patients with cancer. These findings emphasize the importance of routinely assessing caregiver burden and quality of life in oncology settings and support the development of caregiver-focused educational, psychological, and supportive interventions to enhance caregiver well-being and strengthen family-centred cancer care.

Competing interests     

The authors declare no competing interests.

Authors' contributions     

Eman Haider Hamza contributed to the study conception, data collection, data analysis, interpretation of findings, and drafting of the manuscript. Haider Mohammed Majeed supervised the study, contributed to the study design, reviewed the data analysis and interpretation, and critically revised the manuscript for important intellectual content. All authors read and approved the final version of this manuscript.

Acknowledgments     

The authors would like to express their sincere gratitude to the staff of the Babylon Oncology Center, Iraq, for their cooperation and support during the data collection process. The authors also extend their appreciation to all family caregivers who generously participated in this study and shared their experiences. Their valuable contributions made this research possible.

Tables      

Table 1: sociodemographic characteristics of family caregivers of patients with cancer (N = 150)
Table 2: distribution of caregiver burden levels among family caregivers of patients with cancer (N = 150)
Table 3: distribution of quality-of-life levels among family caregivers of patients with cancer (N = 150)
Table 4: correlation between caregiver burden and quality of life among family caregivers of patients with cancer

References