According to the results from questionnaire of readiness of discharge scale, the average total RHDS score in primary caregivers caring leukemia children was lower than that of lung cancer patients. In our survey, only 82.6% family believed that they were ready for discharge,which is lower than that of lung cancer (94.3%)[11] or surgical patients (93.0%)[12]༌indicating that the RHDS of primary caregivers for ALL children in China may not in a satisfied level.
The degree of understanding level about childhood ALL was proven to be independent affecting factors to RHDS. Based on our survey, there was a big difference in Knowledge score of RHDS between patients in local and in foreign developed countries. In our data, as high as 51.8% parents only have had middle school education or even poorer, while in foreign developed countries, more than 50% parents have had college education or better[13]. Lacking enough school education might hinder the enough medical information been obtained. Besides caregivers were undereducated, the shortage in nursing personnel could be another reason for poor knowledge level. In China, the ratio of nurses to patients is much less than that in most western countries[14]. So there were not enough labor-force could be devoted to improving health education effects.
Even in local, compared with other tumors, knowledge about childhood ALL still did not take any advantage. For ALL has much lower morbidity in total age group in China when compared with many solid tumors e.g. lung cancer or breast cancer, it was not paid enough attention like those solid tumors by public health administration, which leading to the poorer community services and diseases education. Even now, many parents still believe leukemia an incurable disease, and chose to give up as soon as been diagnosed. These might be an explanation for a large part of caregivers (35.2%) chose “Do not understand about leukemia” in survey, and also in Weiss questionnaire, the sixteenth items “Knowledge of resources” got a very low score (average 5.87). Therefore, improving the knowledge of childhood ALL by offering more and better hospital education and community services in a variety of ways might essential to improve RHDS.
Besides the knowledge about ALL, the treatment phase of chemotherapy was another affecting factor to RHDS. The induction phase is the first and the key period in ALL chemotherapy. In order to quickly removing ALL cells, in this period, the strongest drugs will be used intensively. It always a tough period in which children will not only suffer from side effects e.g. mucosa damage and hyperglycemia[15, 16] but also complications e.g. infection and hemorrhage[17, 18]. In this period, parents and their caregivers would more likely to get stress from many aspects[19] e.g. the fearing of treatment failure, anxious of high cost and sudden emerging complications. Compared with other phase, this phase is the first and shortest[20], which means the doctors or nurses would only have very little time to transfer essential disease information to caregivers and deal with their emotional stress effectively. The caregivers might also be short of time to get prepared mentally and/or economically.
Complications is one of the main lethal causes in childhood ALL. In our survey, during the treatment in hospital, as high as 65.2% patients experienced several kinds of complications, most of which was infection. Once complications happen, it not only always increases medical cost (longer stay in hospital, advanced antibiotics and more supportive treatment), but also may decrease survival. Therefore, the same as other tumors, complication is an important affecting factor to RHDS. To this concern, in order to improve RHDS, the proper chemical protocol arising from accurate diagnosis and grading is essential, for never too strong or too week protocol is the key to ensure smoothly through induction period and limit the complications. And off course, once complications occur, family without enough social supports or in poor economic condition might suffer more[21].
Lacking social support is a significant problem in childhood ALL caring in less developed country [22]. In our survey, except the twentieth item “emotional support at home”, other three items (twenty-first to twenty-third) of factor “Expected Support” got extremely low scores. Because of lacking enough social support from local community, volunteer agencies and medical institutions, family-unit is still the main economic and labor supporting sources for caregivers nowadays in China. According to questionnaire of general status of family and primary caregiver, a large part of patients belongs to kinship family (71.15%) and/or from rural area (68.77%). Connected by kinship, compared with that in nuclear family and/or in urban area, these caregivers are more easily to get help from family members or relatives nearby. But on another way, because these families might also have more elders and children to feed, have less income and less effective insurance from rural cooperative medical service[23, 24], most of the help they could get might be confined to mental comfort but not objective supports. So even there might be enough mental comfort, the heavier dependency burdens and poorer economic circumstances still made these parents often felling helpless. To this concern, providing more support by means of improving medical insurance systems and making rural medical service available for ALL patients would be essential to better RHDS.
To conclusion, owing to many limitations, RHDS of caregivers for childhood ALL patients is in an intermediate level in China. Based on our data, maybe the support, especially the objective support from society is most needed to improve RHDS. Although in the past decade, ALL have been already included in the medical insurance in China, but the lower reimbursement level and shorting of community services still make many of these families feel helpless. For the incidence of ALL is highest among children and by proper therapy, childhood ALL is now becoming a curable disease, government should pay more attention on ALL children and their family. Except objective support, knowledge about disease is another block. Besides community propaganda and education, education by doctors and nurses in hospital should play a major role. But limited by medical resources, bodies condition but not mental status is still the main consideration for discharge. So, how to make caregivers fully prepared mentally for discharge would become a big challenge for doctors and nurses, and should be always taken seriously during treatment course, especially in the first induction period. And even after leaving hospital, education from nursing still should go on by means of telephone or door-knocking. And finally, to successfully guarantee the curative effect, increase survival rate, decrease complications and shorten hospital stay by proper chemotherapy protocol performing and in-hospital nursing caring will always be the fundament for RHDS improving.