Medulloblastoma is the most common malignant tumor of the central nervous system in children, accounting for approximately 15% to 25% of pediatric central nervous system tumors.1 Its global incidence is estimated to be 0.2 to 0.58 per 100 000.2 In recent years, there has been a significant improvement in the long-term survival rate.3,4 The overall survival rate is approximately 70%, with the 5-year survival rate ranging from 33% to 85% worldwide and from 31.1% to 72.5% in China.5–13 This increase in survival rates allows an increasing number of medulloblastoma survivors to reintegrate into the community. However, survivors often experience long-term neurological, psychological, and social damage and report a poor quality of life (QOL).14,15 Understanding the survivor's experience is crucial for developing effective measures and a continuous nursing system, thereby improving QOL.

Several qualitative studies have explored the lived experiences of pediatric medulloblastoma survivors.16–18 These studies reveal that survivors face numerous challenges upon reintegrating into the community. Some studies have investigated strategies to enhance QOL.19,20 However, it is important to note that the aforementioned research also included children with benign brain tumors. In comparison, children with medulloblastoma exhibit a higher incidence of long-term sequelae and face more difficulties in daily life, necessitating more comprehensive support.21

Moreover, the improvement of QOL among pediatric medulloblastoma survivors is a global challenge, particularly considering the substantial population of affected children in the Asia-Pacific region.5 It is worth emphasizing that the survivor's experience is influenced by various factors such as therapeutic effects, living environment, educational background, and social experiences. Therefore, survivors from different regions may have distinct lived experiences.22 Currently, there is a paucity of data regarding the lived experiences of pediatric medulloblastoma survivors in the Asia-Pacific region.16–18

This study aims to explore the lived experiences of pediatric medulloblastoma survivors in China. The findings will serve as a foundation for the development of effective measures and a continuous nursing system, ultimately improving the QOL of survivors.

Methods

This study used a descriptive phenomenological research approach, using semistructured interviews to gather data. The participants were exclusively selected from Hubei Province in central China and recruited from a prominent tertiary hospital that boasts over 3800 beds. The study received ethics approval from the hospital ethics committee. Survivors were purposively sampled between June 2021 and June 2022. The inclusion criteria encompassed survivors given a diagnosis of medulloblastoma between the ages of 3 and 14 years, who had survived for more than 5 years. Conversely, individuals with severe cognitive impairment were excluded from the study. To ensure a comprehensive understanding of the survivors' experiences, interviews involved the participation of caregivers. Caregivers were included if they had provided care for more than half of the survivor's time since diagnosis and had a nonemployment relationship with the survivors.

To enhance the validity and relevance of the interview outline, 3 experts in neurosurgical nursing were invited to review and evaluate the initial draft, making necessary adjustments to the content. In addition, preinterviews were conducted with 2 pediatric medulloblastoma survivors and their caregivers (Table 1). Considering the potential for memory impairment among the survivors, appropriate questions were carefully designed to facilitate accurate recollection.

TABLE 1 - Interview Outline of First Edition and Final Edition Interview Outline First edition 1. Please describe your daily life experiences since you became ill.
2. Please describe your school life since your illness.
3. Please describe your work experience since your illness.
4. Please describe your current unmet needs. Final edition 1. Can you live independently now?
2. Please describe your daily life experiences since you became ill.
3. Have you insisted on continuing your school education since your illness?
4. Please describe your school life since your illness.
5. Do you have or have you ever had a stable job?
6. Please describe your work experience since your illness.
7. Do you have any other life experiences to add?

During the recruitment of interviewees, Sun (Bachelor of Nursing) introduced herself and provided a detailed explanation of the study's purpose, emphasizing the confidentiality of the interview information and the voluntary nature of participation. Written consent was obtained from either the survivors or their primary caregivers. The interviews were conducted by Sun and Feng (Bachelor of Nursing) and were primarily carried out face-to-face, lasting between 30 and 60 minutes. The time and location of the interviews were coordinated with the interviewees. Before each interview, the researcher explained the purpose of the study and informed the interviewees about their rights, assuring them that they could decline to answer or withdraw from the interview at any time. In cases where the survivor faced communication challenges, the caregiver paraphrased their statements. Throughout the interviews, the researchers maintained a nonjudgmental and nonintervening stance.

Saturation was considered to have been reached when 2 consecutive interviews yielded no new theme. Both Sun and Feng possess experience in qualitative research and have received adequate training and qualifications to conduct this project.

Upon completion of the interviews, the audio recordings were promptly transcribed into text. The resulting text was then verified with the interviewer through an electronic communication platform within 24 hours. Substantial effort was dedicated to thoroughly examining the data, aiming to enhance the validity and rigor of the study. For data analysis, the researchers used Colaizzi's23 analysis method and independently analyzed the textual material. Regular meetings were held to address any discrepancies that arose during the data analysis, with discussions and reexamination of the text serving to reach consensus. To further validate our conclusions, 3 experts were consulted.

Results

A total of 20 pairs of survivors and caregivers were recruited for this study (Table 2 and Supplemental Digital Content 1, https://links.lww.com/JNN/A475). The analysis of the data yielded 4 main themes. The first theme, physical health issue, has 2 subthemes: living with multiple sequelae and difficulty in maintaining healthy habits. Nearly all survivors exhibited varying degrees of neurological deficits and cognitive impairment, including ataxia, fine motor impairment, dysgraphia, poor concentration, and memory loss. Endocrine dysfunction, such as impaired growth, early or delayed puberty, and hypogonadism, was also commonly reported. Survivors additionally experienced fatigue, hearing and vision impairment, and the occurrence of secondary tumors, as indicated in statements such as “These symptoms appeared early and persist” (S12) and “I go to hospital regularly for blood tests and am taking medication” (S17). Illness significantly affected habits related to regular eating, exercise, and sleep. Chemotherapy-induced nausea and vomiting led to severe malnutrition, particularly during the early stages of the disease. Caregivers thought certain exercises could be harmful to survivors, resulting in limited physical activity. Furthermore, survivors experienced poor quality of sleep. Overall, the initial stages of treatment brought about dramatic changes in survivors' lives, with these changes manifesting in various ways as survivors struggled to adapt, as indicated in statements such as “At the beginning of radiotherapy, I couldn't eat anything.... My parents were afraid to let me go out and play” (S1) and “Since I got this disease, a lot of my habits have changed and I can't sleep well” (S3).

TABLE 2 - Survivor Characteristics ID Sex Age, y Age at Onset, y Nationality Employment Status Relationship Status S1 Female 13 7 Han Student Single S2 Female 18 5 Han Student Single S3 Male 25 6 Han Unemployed Single S4 Male 24 8 Han Student In a relationship S5 Male 19 11 Han Unemployed Single S6 Male 26 13 Han Unemployed In a relationship S7 Male 34 12 Hui Unemployed Single S8 Female 31 6 Han Unemployed married S9 Female 27 8 Han Working Single S10 Female 27 7 Han Unemployed Single S11 Female 29 9 Hui Working Single S12 Male 39 8 Han Unemployed Single S13 Male 37 6 Han Working Single S14 Male 18 7 Hui Student Single S15 Male 15 8 Tujia Clan Student Single S16 Male 22 7 Han Student In a relationship S17 Female 27 9 Han Unemployed Single S18 Female 15 9 Han Student Single S19 Male 19 10 Miao Student Single S20 Female 23 8 Han Student In a relationship

Note. All survivors were living with family.

The second theme, community reintegration challenges, has 3 subthemes: returning to school, difficulty in employment, and restricted social activities. The process of returning to school posed new challenges for survivors. Initially, survivors experienced fear of bullying and isolation, even among familiar friends and teachers. Because of cognitive impairment and absences for therapy, survivors often struggled to keep up with their studies. Concerns were expressed regarding school-related accidents, such as seizures and fainting. Despite the immense challenges faced in school life, survivors received support from teachers and classmates. However, for survivors with severe sequelae, returning to school was nearly impossible, as indicated in statements such as “I was worried that I would be teased by my classmates, but when I went to school my classmates and teachers were very caring” (S2), “Even though I am at school now, I have thought more than once that my classmates might laugh at me if I suddenly had a seizure during class” (S15), and “He wants to go back to school, but at the moment he's in no condition to do so” (S5, caregiver). Employment posed a significant challenge for survivors, resulting in heavy financial burdens for their families. Although survivors received a monthly allowance, it did little to alleviate their financial struggles. Survivors with posttumor conditions, particularly those with cognitive impairment, faced difficulties in finding employment. Although some areas in China offered employment training for oncology survivors, it was not widely available, and none of the interviewed survivors had attended such training. Even when survivors managed to secure employment, the fear of unemployment loomed, increasing the likelihood of job loss. Some survivors considered engaging in e-commerce and live streaming, emerging industries in China, as indicated in statements such as “I have tried to find some jobs near my home, but I can't work for long.... I am thinking to do a live webcast” (S7) and “I work slower than other colleagues, so I often worry that I will lose my job one day” (S9). Frequent hospitalization, reduced physical functioning, and compromised immunity restricted survivors' daily activities. Restricted social activities often coincided with academic-related anxiety and diminished social adjustment. Changes in body image resulted in low self-esteem and hindered social interactions. Survivors primarily relied on electronic software platforms to connect with the outside world, as indicated in statements such as “Since he became ill, he has spoken less and has not reached out to his friends, he used to be such an active child” (S19, caregiver) and “When I'm with my friends, I'm always a bit concerned, I'm afraid they might not like me” (S18).

The third theme explored in this study is “overcoming psychological pressure.” Survivors focused on the negative effects of the illness and viewed themselves as “losers.” They also harbored a fear of tumor recurrence, as indicated in statements such as “I've heard that there are a lot of after-effects to the disease, and although I'm fine, I might have them one day” (S4) and “I want to know what will be in the future, but even the doctors and nurses don't know” (S14). Continuous follow-up, ongoing communication, and support from healthcare providers, particularly mental health services, played a crucial role in alleviating survivors' anxiety and fear, as indicated in statements such as “I am grateful to the doctors and nurses for their care and understanding” (S8). Despite experiencing negative emotions, survivors maintained a positive perception of their cancer journey and retained hope for the future, as indicated in statements such as “As long as I am alive, there is hope” (S20) and“I appreciate my parents' concern for me and see how difficult it was for them these years” (S6).

The fourth theme, multiple unmet needs, has 2 subthemes: diminishing support and difficulties in accessing support. Survivors expressed gratitude for the help they received. Survivors recognized that their unmet needs encompassed various aspects, including physical rehabilitation, psychological support, consistent follow-up from medical facilities, and financial assistance. Although survivors received mentoring during high school and university, some of the support diminished after graduation, leaving them feeling uncomfortable, uncertain, and confused about their future. They expressed their reliance on professional guidance after graduation. However, the availability of such support was limited, as indicated in statements such as “I would never have gotten this far without them.... But still, I need a lot of help at the moment” (S11) and “I think the professional guidance after graduation is even more important, but after graduating from university, there is less help available” (S10). Survivors faced challenges in accessing effective support, particularly in remote areas with limited funding. They encountered difficulties such as receiving no response to their applications, a lack of brain tumor–specific support, and unsatisfactory outcomes of their applications. As a result, they often opted to manage on their own instead of seeking formal support, as indicated in statements such as “Although we heard about many social support, these procedures were generally complex, and sometimes it was not even our turn” (S16) and “We live in the city, so it's easier for us to get help, but I think it's a little harder for those who live in the mountains” (S13).

Discussion

We conducted qualitative interviews to gain insights into the survival experiences of pediatric medulloblastoma survivors in central China. The findings revealed that nearly all survivors faced neurological impairments that significantly impacted their lives. The presence of physical dysfunction and limited social interactions caused considerable psychological stress among the survivors. Our study also highlighted the numerous unmet needs of survivors in China.

Survivors exhibited varying degrees of physical health problems, which became more prominent as their survival duration increased, aligning with previous studies conducted in different countries and regions.5,21 Complications could arise at any time, emphasizing the importance of early recognition and intervention.5 During hospitalization, it is crucial for nurses to inform caregivers about potential complications and motivate them to identify any early signs.21 In addition, nurses should actively participate in the development and implementation of rehabilitation programs.21 They can teach survivors and caregivers rehabilitation training methods and provide affirmation to motivate active participation.19 Nurses should closely monitor the rehabilitation process, maintain effective communication between doctors and survivors, and ensure continuity of care.19

The lifestyle of the survivors in our study underwent varying degrees of change, particularly in terms of diet, exercise, and sleep, which is consistent with findings from previous research.24 Changes in healthy lifestyle and QOL are interdependent. Therefore, nurses should regularly assess the physical health status, living environment, and potential risks of the survivors.25 Collaborating with physicians and rehabilitators, nurses can develop personalized health-promoting plans for survivors.24

Survivors faced various challenges as they attempted to reintegrate into the community, which is aligning with previous research.17 Quality education was crucial for survivors to achieve stability in their jobs and social lives.26 Nurses and teachers can collaborate to develop a comprehensive assessment plan for school activities and provide personalized guidance. They can also work together to instill a positive perception of illness among students and foster a culture of tolerance within schools.27 Communities serve as the primary living space for survivors, and community hospitals should be equipped with emergency equipment such as tracheal tubes.28 Nurses can conduct regular family education seminars to assess the functioning of families and the survivor's family relationships. They can assist family members in establishing long-term support plans and continuously adapt the content of family support.29

The physical problems and difficulties in returning to a normal life added to the psychological stress experienced by survivors. However, almost all survivors reported receiving care and compassion from multiple sources, particularly from hospital support, which is consistent with previous research.30 Nursing psychological interventions play a vital role in overcoming psychological barriers.31 Nurses should continuously monitor the psychological state of survivors during hospitalization and provide health education before discharge. Encouraging caregivers to maintain open communication with survivors is crucial for preventing serious negative emotions.32,33

The findings also revealed that survivors still had multiple unmet long-term needs, consistent with previous findings, highlighting the need to enhance support systems.21 Implementing long-term follow-up care plans that use smart healthcare services and web-based clinical tools may be an effective approach to meet survivors' needs.34 These plans should be initiated during the patient's first admission, and nurses, as key members of the program, should develop appropriate discharge plans.35 Establishing an information exchange platform between community hospitals and higher-level healthcare facilities is crucial to facilitate seamless communication and coordination.36 Community nurses and inpatient nurses should take responsibility for supervision, education, and care to ensure timely access to effective treatment and prevent delays.

Limitations

This study has several limitations that should be acknowledged. First, all participants were from Hubei Province in the middle region of China, which may limit the generalizability of the findings to other regions or demographics. However, it is worth noting that the cities where the participants resided, such as Xiangyang and Yichang, share similar geographical and lifestyle characteristics with surrounding provinces, which may mitigate some of these differences. Second, participants with longer survival periods may be susceptible to recall bias, potentially affecting the reliability of certain textual information. However, efforts were made to address this concern by verifying the textual information with the interviewees themselves and involving 2 survivors in the data analysis process. It is also important to note that this study focused solely on the perspectives of partial survivors, and interviews with severe cognitive impairment survivors, caregivers, healthcare providers, and rehabilitation specialists were not included.

Conclusion

Pediatric medulloblastoma survivors face challenges in the physical, psychological, and social aspects of their health, along with multiple unmet healthcare needs. To ensure the long-term QOL for survivors, nurses play a crucial role. They should comprehensively assess the survivor's physical, psychological, and social needs from admission; plan for discharge; and provide regular follow-up care after discharge. Furthermore, nurses should collaborate with caregivers, clinicians, community healthcare workers, and schoolteachers to develop dynamic and personalized programs aimed at enhancing the QOL of survivors. It is also important to explore the survival experiences of individuals in different regions, such as coastal and highland areas, in future research endeavors.

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