Analysis of levels of hope among parents of RB patients during the pneumonia epidemic in COVID-19
This study showed that during the COVID-19 epidemic, the hope level of 48.90% of parents of (N=155/317) RB patients was at the middle level, while it was at low level in 0.95% of parents. By contrast, Sisk et al [14] reported that 55% of parents (N=206/374) had high levels of hope. The reason for this inconsistency may be the difference between the survey time and survey subjects. Our survey was conducted during the COVID-19 outbreak, and the selected research subjects were all from well-known domestic tertiary general hospitals with strong medical diagnoses and treatment levels. Second, the health condition of RB's children was not poor. In this study, 65.93% of the patients were simply reexamined or cured, and 95.58% of the patients were in the intraocular phase. The protection of eyes and eyesight was promising in most patients. Patients with unilateral RB accounted for 70.98%. A previous study reported that parents who have adapted to RB diagnosis have a higher level of hope compared to those who had difficulty adopting [33]. In this survey, 86.12% of patients experienced RB for more than six months, and their parents basically adapted to RB's diagnosis. Some scholars reported that parents defined hope as their understanding of the child's health [34]. In this study, the parents' understanding of RB accounted for 93.69%, so, most of the subjects received systematic health education and rehabilitation guidance, which was helpful to establish a correct understanding of rehabilitation and enhance confidence and belief in rehabilitation. In addition, 97.16% of the subjects were married, while only 9 were divorced or separated. Married couples cope with difficulties more easily than divorced ones.
The highest scored dimension of the hope scale was taking positive action, which indicated that the subjects rooted for the patient' rehabilitation, were willing to take active action, and were actively cooperating with doctors. The possibility of keeping a close relationship with others was the lowest scored dimension, which might be because the respondents needed to spend a lot of time taking care of their children, which affected their close relationship with others. In addition, during the investigation, the awareness of COVID-19 was increasing, and the social contacts were reduced. This suggested that attention should be paid to the subjects' social interaction in clinical nursing care, the communication and the close relationship could be fostered through the network. The more positive attitude towards the disease, the subjects were more willing to take positive actions to improve the present situation. Communication with doctors and other health care professionals could significantly increase hope levels [35] .Even if the child's prognosis is poor, doctors’ disclosure of prognosis can bring hope [36]. Medical staff should be encouraged to communicate with the parents so that they can understand the treatment, nursing, and prognosis of RB, thus stimulating realistic hope.
Higher education levels are associated with better adaptability, lower stress levels, less anxiety and depression, and keep active problem-solving methods [35]. A previous study showed that hope is associated with pain and despair but negatively with anxiety and depression [15, 37]. This study also showed that the parents' hope level of RB patients was negatively correlated with anxiety and depression. Better psychosocial and spiritual support could promote higher levels of hope [38]. Stronger family cohesion was related to higher hope and lower levels of anxiety and depression symptoms [39], as well as the quality of life in children [11]. Medical staff should try their best to identify families with poor family cohesion and encourage them to communicate with other family members, friends, medical care, and other friends through online platforms such as messages and WeChat so as to keep their hope up and optimize happiness.
Risk factors analysis of hope level during COVID-19 pneumonia epidemic in parents of RB patients
Univariate analysis showed significant differences in the scores of hope level related to monocular, sleep quality, health condition, anxiety, and depression (P<0.05). Multiple linear regression analysis showed that the course of the disease, education level, and depression were the independent influencing factors (p<0.05), which could explain the 22.60% of the variation in the hope level. Parents' hope is a widespread multidimensional phenomenon, and the factors hindering and promoting hope levels are related to many aspects of family life, such as the health of the patient, the parents' economic situation, beliefs, and pets [15]. Hope was negatively correlated with psychological distress and depression, and its relationship with anxiety remained unclear, which is consistent with a previous study [40].
The course of illness is negatively correlated with hope levels
The survey results showed that the disease course was a negative factor affecting the hope level of parents of patients with RB, which is consistent with Xiao et al [41]. The longer course of the disease was associated with longer care time. The characteristics of caring work also make caregivers live under high pressure and high load for a long time, which may easily lead to a negative attitude adopted by caregivers themselves during the rehabilitation treatment. In clinical work, medical staff should pay attention to assess the hope level of parents of patients with RB with a long course of the disease, explaining the illness, giving the information support, reducing their uncertainty and helplessness, and enhancing the hope in effectiveness of the treatment for patients.
Lower educational level is associated with a lower level of hope
Hope is a kind of attitude that people adopt when facing crises and challenges, which is closely related to the individual level of education. The survey results showed that education level was a positive factor affecting the ideal level, which is consistent with Xiao et al [41] and Li et al [42]. People with high educational levels are more likely to obtain relevant knowledge and social resources on diseases and health, prepare psychologically and are less likely to develop negative emotions such as anxiety and depression. This also suggests that the government, the media, and medical staff should pay more attention to these groups and provide them with additional psychological support and help. For parents with low educational levels, clinical medical staff should be patient when giving education and use easy-to-understand words to guide them to cooperate and participate in treating children's diseases actively.
Depressed people had lower levels of hope compared to those who are non-depressed
The survey showed that the incidence rates of anxiety and depression of parents of children with RB were 41.32% (131/317) and 29.97% (95/317), respectively. This analysis might be due to the outbreak of the epidemic. Tumor patients are susceptible to COVID-19 because of their low immunity when they go to the hospital. The lack of necessities caused by the epidemic has led to a decline in the nutritional status of cancer patients. The suspension of production during the epidemic period further increased the economic burden of cancer patients' families. Delaying or even stopping the treatment of a tumor may lead to the tumor's progression or deterioration. Continuous assessment of spiritual needs is very important for keeping hope [16]. During the COVID-19 outbreak, 60% of caregivers with depressive symptoms complained of lacking treatment support (e.g., online or face to face) [7]. It is suggested that the public health department, psychiatry department, health care department, nursing professionals, and family members of cancer patients should establish a cooperative partnership to ensure continuous care during the unique pneumonia outbreak of COVID-19. For people with depressive symptoms, necessary psychological counseling and intervention should be promptly conducted. Internet platforms, such as WeChat were used for popular science propaganda on novel coronavirus and treatment or rehabilitation of tumor diseases to reduce patients' anxiety.
Clinical Implications
This study's results helped health care professionals develop intervention measures for mental health problems of parents of RB patients during the COVID-19 epidemic and provided a scientific basis for the establishment of an early warning system for major social stress events in the future. First, health departments need to identify high-risk groups, such as cancer patients and their families. Second, the health department should promote health science education for high-risk groups, such as focusing on easy-to-understand education for people with low education levels. Finally, online clinics for oncology and psychiatry should improve and expand during the epidemic period of infectious diseases.
Limitations
This study has a few limitations. First, the convenient sampling method was adopted in this study. The research samples come from two research centers, and RB parents with WeChat contact information could cause certain selection bias, which may affect the representation of the results to a certain extent. Future research could be conducted in multi-centers to make the research results more universal. Second, the parents' hope changed over time [43], with different levels in different periods. However, this survey was a cross-sectional survey, and a longitudinal follow-up survey is not planned. In the follow-up studies, attention should be paid to the use of longitudinal research to understand the process of dynamic changes in hope.