Scholarlink

Background <p>Children with leukemia frequently experience chemotherapy-related symptoms that persist beyond hospitalization and require ongoing management at home. Parents assume primary responsibility for symptom monitoring and management during this period; however, limited evidence exists regarding how parents experience, respond to, and manage these symptoms within home settings. This study explored parents’ experiences of managing chemotherapy-related symptoms in children with leukemia at home, including symptom experiences, their impact on children and caregiving, and parents’ symptom management strategies.</p> Methods <p>A qualitative exploratory study using focus group discussions (FGDs) was conducted among parents of children with leukemia receiving chemotherapy in Bandung, Indonesia. Twenty parents participated in four FGDs, with 4–6 participants per group. Discussions were audio-recorded, transcribed verbatim, and analyzed using Braun and Clarke’s thematic analysis.</p> Results <p>Three themes were identified. First, children experienced a wide range of chemotherapy-related symptoms, including nausea and vomiting, diarrhea, oral mucositis, pain, fever, poor appetite, fatigue, itching, and hair loss. Symptoms varied in severity, frequently persisted after hospital discharge, and were perceived to be influenced by factors such as chemotherapy agents, fatigue, fever, post-transfusion conditions, and decreased hemoglobin levels. Second, symptoms affected children’s comfort, eating ability, and sleep, while also disrupting daily caregiving routines, creating emotional strain and family burden, and occasionally resulting in unplanned emergency department visits or intensive care admissions. Third, parents employed multiple home-based symptom management strategies, combining prescribed medications, complementary therapies, comfort practices, and adaptations to daily hygiene practices.</p> Conclusion <p>Parents play a central role in managing chemotherapy-related symptoms in children with leukemia at home. Home-based symptom management involves ongoing adaptation to children’s symptoms and substantial caregiving demands. These findings highlight the importance of family-centered supportive care, structured discharge preparation, practical symptom management guidance, and ongoing professional support to strengthen parents’ capacity in managing symptoms during the transition from hospital to home.</p>

错误：搜索内容不能为空，请输入英文关键词
错误：关键词超出字数限制，请精简
高级检索

“Doing everything we can”: parents’ strategies for managing chemotherapy-related symptoms in children with leukemia at home

  • 期刊论文

  • 发表日期：

    2026年7月16日

查看全文
  • Ikeu Nurhidayah,
  • Laili Rahayuwati,
  • Josephine Dionela Agapito

摘要

Background

Children with leukemia frequently experience chemotherapy-related symptoms that persist beyond hospitalization and require ongoing management at home. Parents assume primary responsibility for symptom monitoring and management during this period; however, limited evidence exists regarding how parents experience, respond to, and manage these symptoms within home settings. This study explored parents’ experiences of managing chemotherapy-related symptoms in children with leukemia at home, including symptom experiences, their impact on children and caregiving, and parents’ symptom management strategies.

Methods

A qualitative exploratory study using focus group discussions (FGDs) was conducted among parents of children with leukemia receiving chemotherapy in Bandung, Indonesia. Twenty parents participated in four FGDs, with 4–6 participants per group. Discussions were audio-recorded, transcribed verbatim, and analyzed using Braun and Clarke’s thematic analysis.

Results

Three themes were identified. First, children experienced a wide range of chemotherapy-related symptoms, including nausea and vomiting, diarrhea, oral mucositis, pain, fever, poor appetite, fatigue, itching, and hair loss. Symptoms varied in severity, frequently persisted after hospital discharge, and were perceived to be influenced by factors such as chemotherapy agents, fatigue, fever, post-transfusion conditions, and decreased hemoglobin levels. Second, symptoms affected children’s comfort, eating ability, and sleep, while also disrupting daily caregiving routines, creating emotional strain and family burden, and occasionally resulting in unplanned emergency department visits or intensive care admissions. Third, parents employed multiple home-based symptom management strategies, combining prescribed medications, complementary therapies, comfort practices, and adaptations to daily hygiene practices.

Conclusion

Parents play a central role in managing chemotherapy-related symptoms in children with leukemia at home. Home-based symptom management involves ongoing adaptation to children’s symptoms and substantial caregiving demands. These findings highlight the importance of family-centered supportive care, structured discharge preparation, practical symptom management guidance, and ongoing professional support to strengthen parents’ capacity in managing symptoms during the transition from hospital to home.