The Needs of Parents of Children Suffering from Cancer—Continuation of Research

Abstract

Background: Parents experience many healthcare needs when caring for their sick children. Research shows that parents of oncological children have a high level of unmet needs, including psychosocial, emotional, physical, informational, financial, educational, and spiritual needs. To date, little quantitative research has been carried out on the specific needs of parents of children with cancer, which creates uncertainty about what areas should be addressed in care. This study investigated the prevalence of unmet needs among parents of children with cancer. Methods: A population survey was conducted between 2015 and 2020. Caregivers of children diagnosed with cancer were invited to participate in the study to assess their problems and needs. Results: The analysis found that 97% of the participants experienced some level of need for one or more items, and 73% of the respondents reported a moderate or high need for one or more items. In the field of medical information, 70% of respondents had moderate or high needs, 55% of parents reported a moderate or high level of need for help in the psychological or emotional field, and 30% in the financial domain. The prevalence of moderate or high need in the remaining domains ranged from 10% to 15%. Conclusions: Parents of children with cancer experience a high level of needs, especially psychological, emotional, and information. These data suggest that the existing healthcare system does not meet the needs of parents of sick children. The results show the need to investigate the mechanisms by which healthcare providers can use the healthcare system to identify and meet needs.

“There's no playbook for when your kid has cancer”: Desired elements of an electronic resource to support pediatric cancer communication

“…This study was unique in evaluating the specific needs of families facing a single diagnosis, treated on the same treatment regimen, and whose initial informed consent conversations were based off the same source documents. Yet, participants in our study still had many unmet communication needs similar to those found in other studies of multiple pediatric malignancies, such as anticipatory guidance on treatment side effects, practical aspects of care, and psychosocial support 30,31 . Echoing other studies, even those who felt they received excellent information from their clinical teams still valued additional resources 31,32 .…”

Estratégias de apoio ao cuidador de pessoas com câncer: revisão integrativa

“…In the results already evidenced previously by Fjose et al 6 , the division of roles, identification of the needs of each family member and the promotion of significant time had a stress-reducing effect in the family group of people with cancer. In a Polish study 33 , which addressed the needs of parents of children suffering from cancer, the author states that the greatest need of family members is for information. Therefore, dialogue with the family, whether individually or in a family unit, in addition to being essential, is the main strategy for including family members in the treatment and care of the individual 33 .…”

“…In a Polish study 33 , which addressed the needs of parents of children suffering from cancer, the author states that the greatest need of family members is for information. Therefore, dialogue with the family, whether individually or in a family unit, in addition to being essential, is the main strategy for including family members in the treatment and care of the individual 33 . Thus, studies are needed to better explain the approach to family dynamics as a form of support for caregivers, especially in relation to cancer.…”

Needs Assessment in Parents of Children Affected by Cancer: A Qualitative Perspective

“…Analyzing the parents’ speech content facilitates the gathering of information, allowing us to understand the situations experienced from their personal perspective [ 20 ]. Not only are the parents’ health and well-being affected by childhood cancer, but various areas of their daily functioning undergo important changes that affect the quality of the entire family’s life [ 21 , 22 ]. Having to reduce working hours to accompany the child during their treatment, economic difficulties, poor and sometimes almost non-existent relationships with friends, relationship problems, and scant attention paid to the rest of the family are among some of the most evident consequences [ 3 ].…”