Abstract
Objectives: Parents of children diagnosed with critical illnesses face multiple challenges during their caregiving experience. However, relevant studies have been limited in the Chinese context. Guided by the stress and coping model, we conducted a qualitative study to identify the stressors, coping strategies, and adjustment experiences of Hong Kong parents of children with cancer or hematological disorders. Methods: We recruited 15 parents of children with cancer or hematological disorders requiring bone marrow transplantation and were currently >2 years post-treatment. They participated in a 30-min semi-structured interview. Thematic analysis was performed using the grounded theory approach. Results: The stressors reported by parents included a high caregiving burden during their children’s diagnosis and treatment stages. The fear of recurrence, the need for information, and concerns about late effects were also common among the parents during their children’s transition/survivorship stage. To cope with these stressors, the parents commonly used problem-focused (e.g., seeking help from professionals and support groups) and emotion-focused (e.g., behavioral distractions, venting, and crying) strategies. Despite these stressors, parents reported positive changes through the caregiving experience, such as improved family relationships, developing health-protective habits, and the reprioritization of different aspects of life. Conclusions: Parents encounter different stressors during the cancer care continuum. Using different coping strategies, parents experience positive changes amidst caregiving. Future studies should explore culturally relevant adaptive coping strategies to enhance parents’ psychosocial adjustment.
Highlights
We found that Chinese parents of childhood cancer survivors experienced different stressors during the transition and survivorship phases
Our finding suggests that non-governmental organization (NGO)-led educational talks and support groups at accessible sites may help bridge the identified knowledge gaps and empower parents as they take up a caregiving role
We identify some of the multifaceted stressors that Chinese parents of children with cancer or hematological disorders in Hong Kong experience during the care continuum, with a focus on identifying psychosocial needs during the transitional and survivorship stages
Summary
The survival rate of childhood cancers and serious chronic hematological disorders has increased significantly in the last two decades, yielding an emerging population of survivors in Hong Kong [1,2,3]. Survivorship comes at the cost of developing chronic health conditions due to intensive treatment modalities, including chemotherapy, radiotherapy, surgery, and hematopoietic stem cell transplantation (HSCT) [4,5]. It has been well documented in the literature that survivors may experience long-term physical effects and psychological distress, which may adversely affect their educational and occupational outcomes [5,6,7].
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