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Parents' Experiences of Having a Young Child With Acute Lymphoblastic Leukemia in China
Qian Liu1,2, Marcia A Petrini3, Dan Luo2
1Department of Respiratory and Critical Care Medicine, 89674Zhongnan Hospital of Wuhan University, Wuhan, China.
Insights
Parents of children with acute lymphoblastic leukemia (ALL) in China face immense challenges, including coping with diagnosis, treatment, and uncertainty. Support services are crucial to enhance resilience and quality of life for these families.
Area of Science:
- Pediatric Oncology
- Qualitative Research
- Family-Centered Care
Background:
- Understanding parental experiences is crucial for developing effective interventions for children with cancer.
- Limited research exists on the experiences of parents in China who have a young child diagnosed with acute lymphoblastic leukemia (ALL).
Purpose of the Study:
- To describe the lived experiences of parents in China who have a young child diagnosed with acute lymphoblastic leukemia (ALL).
Main Methods:
- A phenomenological approach using Haase's adaptation of Colaizzi's method was employed.
- Face-to-face, in-depth interviews were conducted with ten parents recruited via purposive sampling in central China.
Main Results:
- Five major themes emerged: the diagnosis as a disaster, fighting the illness, coping strategies, managing diagnosis disclosure, and hope for normalcy.
- Parents prioritize their child's health, manage uncertainty, and cope with suffering, financial burdens, and stigma.
- Resilience and hope are evident throughout the parents' journey.
Conclusions:
- Support services should focus on strengthening family/community support, hope, and positive coping mechanisms to foster resilience.
- Healthcare professionals need to systematically assess parental needs and provide tailored interventions.
- Public education, advocacy, financial aid, and accessible healthcare resources are essential in pediatric oncology to reduce stigma and improve care.
Background:
Understanding parents' experiences is a prerequisite to developing interventions that are sensitive to needs of children and families. In China, little is known about parental experiences of having a young child with acute lymphoblastic leukemia (ALL). This phenomenological study aimed to describe parental experiences of having a young child with ALL in China.
Method:
Ten parents, recruited in central China using purposive sampling, participated in face-to-face, in-depth interviews using Haase's adaptation of Colaizzi's phenomenological method.
Results:
Five theme categories were identified: (a) The Cancer Diagnosis as a Terrible Disaster-The Sky is Falling, (b) Fighting the Beast, (c) Putting on a Happy Face and Other Coping Strategies, (d) Diagnosis Disclosure: If We Tell and How to Tell, and (e) Hope-Filled Expectations: Returning to Normal Life.
Conclusion:
Parents put their child's health as their top priority. They strive to manage uncertainty about prognosis and cope with enormous pressures caused by children's suffering, financial burden, and stigma. Parents also express their resilience and hope throughout their child's cancer journey. Support services to strengthen specific families' protective factors (i.e., family/community support, hope, and positive coping) are needed to foster resilience and quality of life. Health care professionals should systematically assess parents' needs, provide validated education materials, and implement tailored interventions across the cancer continuum. Public education and advocacy about cancer is also necessary to decrease cancer-related stigma, and provide financial aid and health care resources in pediatric oncology.
