Abstract
Introduction
Providing care for patients by family caregivers causes in several consequences known as “Caregiving Burden”, which affects the caregiver's health and the whole family process, considered in holistic healthcare/nursing. This study aimed to evaluate the caregiving burden and social support in family caregivers of patients with cancer and their influencing factors in a local area in Iran.
Methods
In this cross-sectional study, 190 family members of patients with cancer were studied through convenient sampling method. Data were collected using demographic data sheet enriched with Karnofsky Performance Status Scale and Katz Index of Independence in Activities of Daily Living (ADL), and Zarit Burden Inventory and Medical Outcomes Social Support Survey questionnaires.
Results
The results indicated intermediate performance status and moderate independence in ADL in patients. The mean score of caregiving burden was 43.95 ± 17.48 which indicates moderate to severe burden. The average social support in the caregivers was 60.25 ± 23.81% which shows above the average social support. Both performance status and dependence in ADL of patient had statistically significant effect on the caregiving burden in caregivers. Also a statistically significant negative relationship was observed between caregiving burden and social support in primary family caregivers of patients with cancer.
Discussion
Considering the increasing importance of primary care provided by families, developing strategies for providing caregiver's needs through family care in cancer nursing is essential. So supporting caregivers through family nursing in holistic healthcare by providing social support, can play a significant role in reducing caregiving burden in healthcare services considering the qualified holistic healthcare/nursing.
Introduction
Providing care for patients might affect the caregivers physically, psychologically1,2 and financially. 2 The various consequences of caregiving are known as term “Caregiving Burden”, which includes a set of reactions in the caregiver that occurs in physical, psychological and social domains. 3 Which is due to the lack of coordination and balance between the responsibilities of the caregiver to meet the patient's care needs, and other tasks and roles in social, personal, physical and emotional situations, as well as financial resources available to him/her. 2 Family members play a significant vital role in caregiving for their significant other,2,4–7 as an important consideration in healthcare system in family-centered care. 2 Given the increasing number of family caregivers, the negative impacts of caregiving role are significant problems in the healthcare system and, if family care is not taken to protect the family caregivers, it affects their ability of caregiving and reduces the quality of patient care, so the caregivers themselves will become an excessive burden on the healthcare system. 8
On the other hand, the disease process might affect the physical, physiological and psychosocial status of the patient, so the performance status of the patient might be affected, 9 also the daily activity function might face a reduction due to disease advancement or treatment. 10 And the degree of patient dependence in daily living activities can be a significant predictor of caregiving burden. 11 So, logically both activity of daily living and the performance status of patient could be two of the important influencing factors of the caregiving burden in caregivers based on the health problem, society culture and individual's characteristics. Also reduction in the mortality and morbidity rate is the result of promoting perceived social support in patients. 12 Besides, providing social support can enhance the quality of home-based care for patients. 13
Therefore, considering the increase in chronic diseases and the growing role of family caregivers and increasing caregiving burden in them, it is important to identify any factor that reduces the caregiving burden in these individuals. The Joanna Briggs Institute in 2012 points to the factors such as social support, coping resources in caregivers, and high self-efficacy in caring, proper assessment of caregiving by caregiver, and caring for more than two years, which are effective in reducing the caregiving burden. 14 In a review article, Delalibera et al. identified factors such as hope, social support, and caregiver's ability to give meaning to experience of care and comfort with caregiving as associated with lower levels of caregiving burden. 15
Social support of caregivers, which is commonly recognized as an effective reducing factor of the caregiving burden in various studies, is important in these individuals. 16 Support networks, family, friends and professionals, 7 support group, also material and financial support 6 are examples of social support. The sense of being loved, receiving attention, worthiness and ensuring that important people of life will help them with their problems will provide social support. 12
Regarding the important role of the family, friends, significant others and healthcare professionals in adapting the caregivers of the patient, family caregivers seem to be in need of support more than what professionals might have guessed. Therefore, recognizing the needs of family caregivers is essential for healthcare professionals,17–19 especially for nurses. 17 So, providing adequate support and meeting needs of caregivers through the family nursing can enhance the caregiver coping with stress 19 and reduce the caregiver burden, and increase the quality of life of the patient. 20 Also family social support results in positive effects for the caregiver and whole family function and well-being, 21 and besides, the mental well-being of caregivers is a result of sufficient perceived social support. 18
Considering that the largest and most important part of social support for patients is provided by families, especially in Iranian societies,12,22 which is known for family support in difficult situations. This fact should be mentioned that the support provided to patients by the family is the highest in comparison with other healthcare systems, and family can be named as the only effective support for patients. 12 So the social support of these family caregivers who are faced with increasing care responsibilities is so important. Accordingly a study in this regard can be beneficial in promoting healthcare systems and planning interventions to improve the caregiver and the patient health. 8
This study aimed to determine the caregiving burden and social support in family caregivers of patients with cancer and their influencing factors in family members as primary family caregivers in a local area in Iran. So the results can help in care planning and solving the problems of families affected by physical, psychological and social stress of cancer.
Methods
Study design
The current study was a descriptive cross-sectional study to determine the caregiving burden and social support in family caregivers of patients with cancer and their influencing factors in a local area in Iran.
Setting
The research setting was haematology ward and oncology clinic of Imam Khomeini Hospital in Ardabil, Iran. The healthcare system of Iran covers all primary, secondary and tertiary prevention levels in public health as referral system and secondary or tertiary hospitals. The training and therapeutic centre as the study setting was a secondary and tertiary hospital in the mentioned area which provided both inpatient and hospitalised care for cancer patients. Besides, the family is mostly the main primary support in patient care in Iran. Culturally, most of the Iranian families have supportive and close relationships and live together until the children get married, but sometimes even the married children live with the family, especially in the study local area. Also when any of the family members need help or care, the first available support is provided by significant others as the whole family or mostly by one of the members specifically. The main family caregiver who provides care for his/her patient family member, is a primary informal nonprofessional caregiver and supporter whether single or married and living with the family under the same roof or not.
Participants
The participants were the family members of patients with cancer, introduced as main primary caregiver by patients themselves, whether literate or illiterate. In order not to lose data from the few illiterate participants, one of the researchers completed the questionnaires by explaining the answering method and asking the questions verbally in national language which is Persian. The study inclusion criteria were (a) passing at least three months of cancer diagnosis, (b) at least one discharge from the hospital since first cancer diagnosis (having outpatient care experience), and (c) willingness to participate in the study.
Considering the mean of 30.55 in Zarit Burden Inventory and the standard deviation of 19.18 in Vahidi et al.'s study, 4 the required sample size was 187.1 people; and to neutralize sample attrition, 190 eligible people participated in the study through convenient sampling method. The questionnaires with missing data were excluded from the relevant part of the study.
Data collection
Demographic variables
Demographic information included demographic characteristics of patient, family caregiver and factors associated with caregiving. Demographic data sheet enriched with Karnofsky Performance Status Scale and Katz Index of Independence in Activities of Daily Living (ADL) were used for data gathering. Karnofsky Performance Status Scale is a usual tool to determine the cancer patient's performance status in a range of 0–100 score, that higher scores indicates better performance. 9 The Katz Index of Independence in ADL is a useful tool to assess the functional ability in older adults and patients under health problems, which is scored between 0–6 as the most dependent to the most independent. 23
Caregiving burden
Zarit Burden Inventory was used to study caregiving burden in patient's caregivers,5,7 which includes 22 questions and the score ranges in following manner, “0–20”, “21–40”, “41–61” and “over 61 up to 88” which respectively indicates “No”, “Mild”, “Moderate” and “Severe” caregiving burden. 5
Social support
The Medical Outcomes Social Support Survey was used to measure social support in caregivers. Based on this survey, the higher percentages in social support scores indicate higher achieved social support. Also it includes 19 questions which investigate the various dimensions of social support including information/emotional support, tangible support, affectionate support, positive social interactions and an additional item about access to someone to do things with to help you get your minds off things. 24
The questionnaires were translated to Persian language and then back translated by two English teachers to reach the best match in Persian. The face and content validity of the instruments used in this study were approved by 10 faculty members of nursing school, and their reliability were determined by pilot sampling of 10 caregivers using Alpha-Cronbach coefficient, which equaled 0.94 for Zarit Burden Inventory and 0.89 for Social Support questionnaire. Then the questionnaires were completed by the main researcher to avoid losing illiterate or low literate people.
Data analysis
The SPSS v.23 was applied for data analysis. Descriptive statistics including frequencies percentages, means and standard deviations were used where needed in data analysis process. T-test and correlational analysis were used to analyze the caregiving burden and social support in demographic data as required. The regression model analysis was used to determine if Karnofsky Performance Status and Katz Index of Independence in Activities of Daily Living in patients and Social Support of caregivers are affecting factors and predictors of Caregiving Burden in family caregivers of patients with cancer as dependent variable. Also the Pearson correlation coefficient test was used to measure the correlation between Caregiving Burden with Social Support and each of its five dimensions. A p-value of 0.05 was considered to determine the statistically significance amounts in data analysis.
Ethical consideration
The study was conducted after acquiring the approval and written confirmation from Ethics Committee of University (Ethical code: IR.ARUMS.REC.1395.78) as a thesis for Master of Science in Medical-Surgical Nursing. The data collection was followed by obtaining informed written consent from all participants.
Results
The mean age of 190 caregivers was 41.07 ± 13.98 and the majority (44.7%) of them was in young age groups (29–39). The youngest caregiver was a 13-years-old teenager and the oldest was a 75 years old elderly. In both groups, the majority of caregivers (66.8%) and patients (62.6%) had no financial income. Regarding the insurance situation for healthcare services, 13.2% of caregivers and 2.3% of patients were not covered by any insurance services. In contrast, the frequency of those who were covered by supplementary insurance was 3.5% in the caregiver and 10.5% in the patients. Among the caregivers 4.2% were temporarily living with the patient. Most of the caregivers (78.4%) had rotational care with other family members, and 58.4% of caregivers were responsible for providing care to a patient as their first experience. Most of the caregivers, with a frequency of 94.73% were providing care to their patients in a daily routine between 2–24 h and the maximum hours of care were 16–24 h/day, with a frequency of 54.7%. For more demographic findings see Table 1.
Participants demographic findings.
The mean score of caregiving burden among caregivers was 43.95 ± 17.48 based on Zarit Burden Inventory. The findings indicated the caregiving burden was low in 7.4% of caregivers; mild to moderate in 36.8%, moderate to severe in 35.8%, and was severe in 20%. The caregivers who were older aged (P-value .005), female (P-value .004), non-householder (P-value .009), without financial income (P-value .000), without care rotation (P-value .007), providing daily care (P-value .000) and those caring of male patients (P-value .001) experienced more caregiving burden. According to the Karnofsky scale the average performance status of patients was 55.21 ± 16.05 and the mean independence score of patients in ADL based on Katz index was 4.59 ± 1.87, also Table 2 declare their detailed information respectively and the related caregiving burden score in caregivers.
Frequency and percentage of patients in performance conditions of the Karnofsky Performance Status Scale (Part A) and each independence score of the Katz Index of independence in activities of daily living (Part B); in addition to the related mean caregiving burden score of caregivers in each performance condition (Part A) and each independence score (Part B).
The average social support in caregivers was 61.38 ± 17.14 and the range of scores among the caregivers was from 18 to 90. Also it is necessary to mention that the total of 188 participants completed the social support survey and 2 of the them faced the time limitations as the therapeutic time of their patient chemotherapy was finished. Therefore, in terms of comparing any data to social support, the 2 missing questionnaires were not considered in data analysis. In average, a caregiver received 60.25 ± 23.81% social support. Most caregivers (29.5%) received between 60–80% social supports. The caregivers who were older aged (P-value .000), householder (P-value .003), living with patient (P-value .001), with experience of job loss (P-value .013), without care rotation (P-value .010) and those caring of patients with less than 5 children (P-value .010) received less social support. According to Table 3, on average, caregivers who participated in this study received over 50% of support, in different dimensions of social support. Also it can be argued that the total 100% of social support in a caregiver of present study includes an average of 23.96% emotional/informational support, 14.7% is tangible support, 8.04% is affectionate support, 10.42% is positive social interaction and 3.13% access to someone to do things with to help you get your minds off things. The amount of caregiving burden in the categorized social support as 0–19, 20–39, 40–59, 60–79 and 80–100 percent is 13, 26,50,56 and 43 participants respectively, which shows a decrease in caregiving burden with the increase of social support.
Frequency and percentage of social support in caregivers in terms of social support dimensions.
The findings of the regression analysis test, considering the caregiving burden as a dependent variable, pointed out that performance status and independence in ADL of patients and social support of caregivers had statistically significant effect on caregiving burden (Table 4) and there was a reverse relationship between caregiving burden and social support (P .001). Also according to Table 5, in this study there was statistically significant correlation between each dimension of social support and caregiving burden except for the emotional/informational support (P .152). And totally there was a reverse correlation between caregiving burden and social support in caregivers (Pearson Correlation Coefficient −.236) (P .001).
Regression analysis of performance status and independence in ADL of patients and social support of caregivers with caregiving burden in caregivers.
Dependent variable: Caregiving Burden.
Correlation of caregiving burden with social support and its dimensions in caregivers.
*Correlation is significant at the level of 0.05.
**Correlation is significant at the level of 0.01.
Discussion
The current study aimed to determine the caregiving burden and social support in family caregivers of patients with cancer and their influencing factors in a local area in Iran, which is socially important, regarding to the supportive manner of Iranian families in difficult conditions such as cancer disease in the community. As other studies conducted in different areas of Iran indicate that Iranian family members are involved in their significant others' primary care as family caregivers and confront with patient care challenges in different chronic conditions,4,25–29 the included population in the local area of the study can be considered as a sample of Iranian families. In this study, the average caregiving burden score was moderate to severe. In Bekdemir & Ilhan's study (2019) it was reported as moderate for the caregivers of home healthcare services. 11 Kahriman & Zaybak's study (2015) indicated a mild to moderate burden in caregivers, and frequently half of caregivers in their study experienced mild caregiving burden. 5 Vahidi et al. (2016) also pointed out the caregiving burden in caregivers of patients with breast cancer was mild to moderate which indicated higher score than other studies using the Zarit Burden Inventory. 4 Considering the findings of the studies about caregiving burden which is investigated using similar Zarit questionnaire in caregivers of patients with cancer, the perceived caregiving burden in participants of current study was severe. And that was affected by individual factors of both caregivers and their patients, financial problems and healthcare insurance. Lower level of caregiving burden in some studies may also be related to the type of cancer disease or the measurement tool that would result in different findings. Therefore, it can be said that caring for a patient carries caregiving burden, depending on the social and cultural conditions, the individual's ability to balance and coordinate between his/her responsibilities and other predictors of caregiving burden.
Considering the caregiving burden as a dependent variable, the performance status and independence in ADL of patients influenced it reversely. So the worsening in patient's performance status and becoming more dependent in ADL would result in more perceived caregiving burden in family caregivers. The findings were along with Kahriman & Zaybak's study (2015), in which the decrease in performance status of patients with cancer results in increasing dependency to the caregiver who experiences more burden. 5 Also other similar studies resulted in reverse relationship between caregiving burden and patient's performance status30,31 and independence in ADL.4,7,14 According to all the compatible findings the performance status and independence in ADL of patients could be considered as predictors of caregiving burden in caregivers in any society with different socio-cultural contexts.
In surveys of social support, the mean score of caregivers was higher than the average. As Nightingale et al., reported a moderate level social support, 16 and Astrup et al., disclosed approximately moderate social support in family caregivers of cancer out patients, 32 also for family caregivers of patients with Alzheimer, Hernández-Padilla et al., revealed high perceived social support, 33 which are concordant with our findings. However, in the study of Kahriman & Zaybak (2015) who used a Multidimensional Scale of Perceived Social Support, the average score of social support in caregivers was even more than the average. 5 The results of these studies indicated that social support in caregivers was in moderate and high level. However, the type of study and tools used in surveying the social support can result in different received social support, which can be influenced by demographic and socio-cultural factors. Available evidence suggests that caregivers of patients are people who try to provide social support for their patients and have taken the major responsibility of care as the first source of the patient's support.
The results also indicated a reverse relationship between caregiving burden and social support; so the increase of social support, resulted in caregiving burden decrease and vice versa. Also in other similar studies, there was a reverse relationship between caregiving burden and social support.5,7,14–16,20 Therefore, the congruent findings of the current and other studies, indicate a decrease in caregiving burden as social support increases, which confronts healthcare services with an important challenge to design supportive programs for vulnerable caregivers.
In terms of social support dimensions, the most received social support in this study was affectionate support and others were tangible support, positive social interaction, an additional item of access to someone to do things with to help you get your minds off things, and emotional/information support, respectively. Also the highest correlation of social support with caregiving burden was associated to affectionate support in current study. While in Nightingale et al.'s study (2016), the most received social support was affectionate dimension, and the subsequent dimensions included positive social interaction, emotional/information support, and finally tangible support. 16 Also their study findings revealed a reverse correlation between various dimensions of social support and dimensions of caregiving burden, the highest correlation was between tangible support and lack of family support. 16 On the other hand, in Kahriman & Zaybak's study (2015), the most social support was provided by the family, then by significant others and finally by friends, and the support received from friends or significant others had a decreasing effect on caregiving burden, while the support received from family members contrary to its highest average score, was not associated with caregiving burden. 5 Affectionate support commonly got the highest amount of support received by the caregivers in the current and the Nightingale's study, which is also along with Kahriman & Zaybak's study findings which addresses more support from families, so it can be justifiable and supported by their results. But in spite of the importance of the emotional/information dimension found in other studies, in this study, the minimum amount of received support by the caregivers was associated with this dimension. Perhaps it can be said that according to personal perspectives and individual differences, everyone who has a better ability to understand the various environments and situations can also understand various social supports. Also knowing about the existing healthcare services and social support providers in the community and the way to access them as volunteer family caregivers is highly important in societies similar to Iran with deprived living areas.
In light of Iranian cultural behaviors in supporting and caring their family members, the study population follows the same family pattern of society, so it can be claimed that the study findings are generalizable at least to the local area, Iranian population and people with similar cultural societies. The convenient sampling helped to consider the active family caregivers in cancer patient care whose beloved cancer patient was under treatment, instead of the cancer survivors who may have self-care experiences more than family care. Also that in data collection period of time, most of the patients had severally revisited the therapeutic centre, therefore randomisation was not possible and data could be lost Also the least missing data which refer to only two social support survey completion, could not affect the findings considerably. But the variety of cancer types and severity of this chronic disease between cancer patients is the main limitation of the current study, because these factors could have different effects on individuals, so the findings of this study may also be affected by the involved body organs or systems with cancer and its consequences on patient care and family caregiver.
Based on the results of this study and similar studies in similar cultural context, it is expected to develop strategies to provide caregiver's needs and improve care and support for caregivers through family care in holistic healthcare/nursing. This support will also automatically lead to improved, preserved and continuous patient care and enhance the quality of patient's palliative care. It can also result in reducing the cost of care. Even more importantly monitoring the health status of family caregivers, especially who reports poor levels of social support should be considered to be managed soon and well enough in healthcare services for qualified holistic nursing. Therefore, by increasing the purposeful focus on this vulnerable group of caregivers, the primary source of support for the patients with cancer will be supported. Also that family nursing and family care are key components of holistic nursing.
Considering the global spread of cancer and affected status of performance and independence in ADL of the patients in different periods of disease involvement or treatment, the increasing importance of primary care provided by family members is highlighted in the society of Iran as any other societies which take the family care into account. Although the importance of caregiving responsibilities of family members may be less-known, but it can be dared to claim that accepting this role by the family members will contribute to the healthcare system and family care in oncology and cancer nursing. The caregiving burden in family caregivers is impressible due to care and its responsibilities beside any other accountabilities of the caregiver in line with his/her social roles. Also this is mostly affected by social support as a common effective factor among various studies in reducing caregiving burden, providing which can enhance the family process and quality of patient care.
Footnotes
Acknowledgements
The research appreciation goes to patients with cancer and family caregivers who participated in this study and the healthcare personnel in target wards of the study.
Data availability statement
The data which supports the findings of current study is available from the corresponding author upon reasonable question/request.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
