Parents’ Experiences of Having a Young Child With Acute Lymphoblastic Leukemia in China

Abstract

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.

Care burden and associated factors in caregivers of children with cancer

“…Consistent with previous studies [ 4 , 18 , 35 ], caregivers with good financial status had less care burden. This may be due to the fact that well-off families can receive more supportive services from the community or provide better treatment for the child, which can improve the patient’s clinical condition and reduce parental care burden [ 18 ].…”

“…In this regard, the results of a qualitative study (2021) in China showed that the cost of cancer treatment for families with sick children was high, which made them stressful. Furthermore, financial problems were one of the main reasons for stopping treatment in this study [ 35 ]. Inadequate income reduces the quality of life, which in turn increases perceived care pressure.…”

"Cambia la vida de un día para otro”: Experiencias de madres y padres al cuidado personal de un hijo/a hospitalizado por cáncer

“…Al comparar los hallazgos con la literatura actual, se observó que hay una concordancia con que el diagnóstico inesperado de cáncer en un hijo impactó fuertemente a los padres. Estudios cualitativos muestran una experiencia global similar; investigaciones de distintos países encontraron que la situación fue como sentir que el cielo colapsa, (16) como un desastre terrible (22) y como una de sus experiencias más difíciles y dolorosas. (23,24) Dentro de los hallazgos reportados en este estudio destaca que la visión de la propia corporalidad y del espacio interno de madres y padres fue olvidado en pos del cuidado del niño/a, lo cual se puede vincular a la evidencia actual que muestra que el cuidado de un niño con cáncer se asocia a mayores síntomas depresivos en padres y madres, (25,26) síntomas de estrés postraumático (27) e incluso que la carga de cuidado impacta su calidad de vida.…”

Hope Experiences in Parents of Children With Cancer and Affecting Factors

“…Psychological resilience, which improves parents' experiences of hope, is thought to be an important coping skill that provides support in the caregiving process. 15 Resilience is de ned as the ability to maintain a biological, psychological, and spiritual balance by drawing on personal and social resources to protect psychological well-being, and adapt to stress and challenging experiences. 16 It has been revealed that psychological resilience plays an important role in improving coping skills and promoting psychological well-being in parents of children with cancer.…”

“…14,17−19 Liu et al investigated the experiences of parents of children with Acute Lymphoblastic Leukemia (ALL) and found that parents particularly need hope, psychological resilience, and empowerment during their stressful cancer journey. 15 Resilience is thought to contribute to the psychosocial well-being of parents and their experiences of hope, to facilitate their adaptation, and empower them to overcome di culties during the cancer experience. 12,20,21 The concept of hope also has a spiritual aspect that provides an intrinsic resource for individuals to express and achieve their goals, especially in uncertain, critical, and stressful situations.…”