Parents' Distress and Demands for Children With Cancer‐Related Cognitive Impairment in Western China: A Qualitative Study

Abstract

ABSTRACT Backgroud Cancer‐related cognitive impairment is one of the common complications in children with cancer, but our understanding of their experience with cognitive deficits remains limited. From the perspective of parents, this study aimed to explore the distress and demands faced by children with cancer‐related cognitive impairment, to provide references for developing targeted intervention strategies for cancer children. Methods We used a purposeful sampling method to conduct semi‐structured interviews with the parents of 18 children with cancer‐related cognitive impairment. The transcripts were analyzed using Colaizzi's method. Results Three categories and 11 subcategories were obtained from the data analysis, including diverse levels of cognitive impairment in children (speech communication difficulties, impaired executive function, attention deficit, and intellectual disability), persistent negative emotions (anxiety and worry, complaints and resentment, negative avoidance and positive experiences after psychological adjustment), multiple needs (need for disease information, need for professional management, and an urgent need for more external support). Conclusion Parents of children with cancer‐related cognitive impairment face a significant psychological burden, coupled with confusion and numerous inquiries regarding the symptoms and management of their children's cognitive impairment. It is imperative for medical professionals to strengthen the dissemination of information related to cancer‐associated cognitive impairments, while promptly recognizing and intervening in related symptoms. Rational allocation of resources, establishment of targeted support systems, and enhancement of social acceptance may be the key points that policymakers could consider. These efforts hold immense significance, as they play a pivotal role in elevating cognitive capabilities and enhancing the overall quality of life for children with cancer.

Keywords

• cancer
• children
• cognitive impairment
• parents
• qualitative study