The increase in outpatient treatments for cancer patients increases the burden of the caregiver in coping with the symptoms related to the disease and treatments. Caregivers play a very important role in symptom management of patients and disease recovery[23]. Changes in caregivers' quality of life and reactions to care directly affect patient care during treatment [18]. With professional face-to-face education, reducing negative effects on caregivers can provide psychosocial support to caregivers and improve patient outcomes [24]. Thus, there should be more focus on making the care experience better quality and accurate via education and the positive outcomes associated with it [25]. To our knowledge, no other study specifically addressed the effects of education provided to family members caring for this patient group on caregiving reactions and healthy lifestyle behaviors.
In our study, the mean HLBS II score was higher in the educated group than the non-educated group, and healthy lifestyle behaviors were significantly better. There was no significant change in the experimental group in terms of only physical activity after education. The likely reason for this in both groups, caregivers spent more than 9 hours a day with the patient, and they did not have time to devote to physical activity. Also, during the follow-up period, there was no other person to care for those being cared for. Beesley et al. found that caregivers, 54% were unable to do physical activity due to their care responsibilities, and 71% were overweight [2]. Gijerset et al. also observed that after an education program for caregivers, their health and social relations improved, but there was no change in their physical activity status [7]. In addition, the traditional lack of physical activity of Turkish society can also be considered as another factor [5].
Previous studies have shown that symptom-focused education provided to caregivers increases care-related skills and reduces negative mood [3, 11, 12]. Hendrix et al. prepared a training program to reduce symptoms and caregiver stress and found that the caregivers who applied this program had higher self-efficacy in symptom management and lower anxiety and depressive symptoms [11]. Harding et al. used a module containing symptom training, social support, and aromatherapy for family members for six weeks and found that the physical, psychological, and social health levels of family members increased after this module [10]. In the study by Belgacem et al it was found that caregivers educated on nutritional support, nursing care, social support, and symptom management had a better quality of life scores and reduced care burden [3]. Furthermore, Leow et al. (2015), in a psychoeducation study, reported that the educated group had higher levels of social support, more interest with the patient, better self-care and quality of life, and lower levels of negative response to care compared to the standard care group [16]. These data are in line with our study and show that education is important for caregivers. Adverse effects associated with colorectal cancer and its treatment, such as weight loss, nausea, diarrhea, pain, dyspnea, insomnia, and fatigue may cause particularly higher caregiver burden in this patient group [19]. This situation reveals the undeniable importance of education for the family member caring for the CRC patient.
In our study, there was no increase in all sub-dimension scores of the HLBS II scale in the control group, and it was lower than the scores of the experimental group. This difference between the groups is consistent with the literature and shows the effect of education and telephone counseling. Studies in which no education, counseling, or similar nursing interventions were carried out have shown that caregivers who try to cope with diseases or symptoms after cancer diagnosis experience poor nutrition, deterioration in personal-social relationships, stress, and burnout related to care [7, 18, 21]. Therefore, understanding the negative effects of cancer experience on caregivers and providing professional support for them is important for the health of both patients and family members.
After the education, while the mean scores of the CRA scale sub-dimension of the experimental group were similar to the pre-education, there was a negative change in the control group. Although this result suggests that education does not make a difference, interestingly, it was determined that the mean scores of the control group increased significantly, although there was no change in the mean scores in the experimental group. This finding suggests that the experimental group improved their general health and coping skills compared to the control group, in other words, the reaction to the care of the family members who are educated may not become more negative.
The experimental group CRA scale had the highest mean score self-esteem sub-dimension. This may be because, with the effect of education, caregivers are happy to care for and help their loved ones. Hee and Soon showed that caregivers who provided education had better scores on self-esteem and lack of family support sub-dimensions, and also they emphasized that nursing intervention is necessary to increase caregivers' psychological welfare and self-esteem [14]. On the other hand, Grov et al. found a significant difference in the mean scores of only the lack of family support sub-dimension in the caregivers educated, compared to the pre-education level. In addition, they performed the scale again to the same caregivers after four months but reported no statistically significant change in scores [8]. Although the mean scores of the intervention group in the other sub-dimensions were lower, the reason for the increase in the mean scores of the control group CRA scala may be due to the negative reactions of the family members who could not receive support, parallel to the increase in the number of chemotherapy cures.
In the experimental group, the CRA scale subgroup of lack of family support and the HLBS scale interpersonal relationships, nutrition, health responsibility, and spiritual growth sub-dimensions were negatively correlated. The fact that only one person is responsible for the care of the patient, the limitation of daily activities, and the inability to find physical and psychological strength to perform health-protective behaviors are important factors in this. The increasing lack of family support among caregivers negatively affects many healthy lifestyle behaviors. Therefore, focusing on eliminating the lack of family support during education will have serious positive results for caregivers. Previous studies revealed that caregivers who lack family support are affected by their care responsibilities, family and social relations have decreased, and they cannot have health checks [8, 20]. Yu et al. reported a positive correlation between lack of family support and health problems [26], and also they reported a negative correlation between lack of family support and personal success. Similarly, the fact that Avşar (2008) stated that the lack of family support and the interruption of daily life are related, supports our current results [20]. In addition, it was observed that the increase in the self-esteem of the caregivers educated positively affected the health responsibility and spiritual growth, and also the reduction in health problems positively affected the spiritual growth. At this point, reducing the lack of family support with education as well as increasing self-esteem and reducing health problems are the most important components that will positively affect healthy lifestyle behaviors.
Our study had potential limitations. First, family members with CRC were interviewed three times. However, as the chemotherapy process was prolonged, the risk of patients not being able to complete the treatment and the patients coming from outside the province to prefer other hospitals could have caused interruption of the interviews. Therefore, no further interviews were conducted with family members. Second, the population included in the study is small. On the other hand, in order to provide education standardization, the study was performed with a single educationalist and the control and experimental groups in two different hospitals. It was thought that the increase in the patient population might disrupt standardization and affect the accuracy of the data.