4.1.1 Establish a monitoring and reconstruction system for endocrine dysfunction
Endocrine function affects the growth, development, and immune function of young survivors . Therefore, it is extremely important for long-term survivors to properly deal with the interaction between multiple substitute hormones, meet the personalized needs of growth and development, improve prognosis, and enhance the quality of life .
4.1.2 Strengthen knowledge support relevant to long-term survival
This study found that, due to the side effects and complications of radiotherapy, chemotherapy, and surgery, long-term survivors presented a series of complications, such as decreased limb muscle strength, sleep disorders, and fatigue. In this study, self-perception of the overall quality of life was poor, which is consistent with the findings of previous studies that central nervous system tumors have the greatest impact on the quality of life . Based on the personalized needs of survivors, targeted rehabilitation or recovery courses should be developed, information exchange among survivors should be strengthened, and WeChat groups, QQ groups, or communication platforms should be established for regular information exchange activities and sharing of effective recovery plans to strengthen support. The mutual-aid group of patients regularly organized by the medical staff  also promotes physical and psychological health of long-term survivors.
4.1.3 Offer targeted emotional, psychological, or spiritual support
Although the survivors have recovered and lived for a long time, their psychological problems are still difficult. In this study, the average age of the survivors was 22 years, and they are in not only the transitional period of growth but also the fragile and sensitive time physically and mentally. Targeted psychological support or spiritual care can help them regain confidence and belief in life , and spiritual care can also help young long-term survivors build hope and explore the meaning of life . Spiritual care methods include therapeutic communication, music therapy, diary writing, painting therapy, and creative art therapy, which can help survivors manage their emotions and realize inner peace .
4.2 Develop social support systems for long-term survivors
4.2.1 Encourage families to enhance communication with the outside world
The family has always been the primary caregiver. The worse the patient’s physical condition, the higher the dependence on family support. In both work arrangement and care planning, the family is in a very important position, and its function is of great significance. However, the family economic conditions of our 14 patients are poor, so the families did not pay enough attention to the developmental problems of the survivors, such as the independent planning for the future. Families can also send a signal for help to the community to obtain support from other systems.
4.2.2 Facilitate family, school, and community interactions
An intermediary system is a social network formed around the micro system, such as schools, work units, and neighbors. For some respondents, in life, they would say, “I have no friends,” “I used to have classmates, but now there is no contact at all.” Therefore, survivors can be encouraged to participate in community activities, such as activities of village committees, neighborhood committees, and community organizations.
4.2.3 Strengthen social support system
A high density and large number of patients with brain tumors are noted in China . Through the interview, it was found that the social support system for patients with brain tumors and their caregivers was weak and society paid less attention to brain tumors. The researcher found that half a year or one year after the patients returned to the family or society is an important stage to truly test disease acceptance and adaptation by individuals, including colleague relationship, school adaptation, and understanding ability. Of the 14 respondents in our study, most were weak in social interaction and had few friends. According to the characteristics of survivors, suitable and accessible social programs can be developed. Western countries have established the Children’s Brain Tumor Tissue Consortium and other organizations committed to scientific research and clinical translational research on children’s brain tumors using a large sample size and several data platforms. Moreover, charitable organizations, such as the Brain Tumor Epidemiology Consortium, have set up various long-term tracking platforms for follow-up services. Therefore, we can raise social attention on brain tumors through multi-media, the Internet and WeChat platforms, and set up special funds to help them recover.
4.2.4 Build a follow-up platform for young long-term survivors of brain tumors
Presently, the social follow-up and management services for young patients with brain tumors are incomplete. Referring to relevant existing experience, a follow-up service platform for young patients with brain tumors was suggested to be built to improve the social security mechanism and win more reasonable humanistic and social support for survivors . Especially for the employment services of survivors with physical and psychological disorders, there are large differences in individual needs after treatment. In employment counseling or assistance, it is necessary to make a comprehensive study of individual conditions.
4.2.5 Raise social attention
Through media convergence, efforts should be made to raise social attention on this population and change the inherent views and attitudes using stories of patients in the form of publications, documentaries, movies, and short films.