Parents of a child newly diagnosed with cancer must receive an extensive amount of information before their child’s initial hospital discharge; however, little is known about best practices for providing this education. An interpretive descriptive study design was used to describe actual and preferred educational content, timing, and methods among parents of children newly diagnosed with cancer prior to their child’s first hospital discharge. Twenty parents of children diagnosed with various malignancies participated in individual interviews 2 to 12 months after their child’s diagnosis. Data were analyzed using constant comparative analysis. Education delivery occurred in a telling manner at diagnosis transitioning to a reciprocal process of teaching during the inpatient stay, then primarily back to telling immediately before discharge. Parents expressed a variety of preferred learning styles but noted that their preferences were rarely assessed by healthcare providers. Multiple factors influenced parents’ ability to process educational information received during their child’s initial hospitalization. Findings suggest that nursing practices should include assessing for influencing factors, providing anticipatory guidance, and incorporating parents’ preferred learning style into the educational plan.
There is a paucity of data to support evidence-based practices in the provision of patient/family education in the context of a new childhood cancer diagnosis. Since the majority of children with cancer are treated on pediatric oncology clinical trials, lack of effective patient/family education has the potential to negatively affect both patient and clinical trial outcomes. The Children’s Oncology Group Nursing Discipline convened an interprofessional expert panel from within and beyond pediatric oncology to review available and emerging evidence and develop expert consensus recommendations regarding harmonization of patient/family education practices for newly diagnosed pediatric oncology patients across institutions. Five broad principles, with associated recommendations, were identified by the panel, including recognition that (1) in pediatric oncology, patient/family education is family-centered; (2) a diagnosis of childhood cancer is overwhelming and the family needs time to process the diagnosis and develop a plan for managing ongoing life demands before they can successfully learn to care for the child; (3) patient/family education should be an interprofessional endeavor with 3 key areas of focus: (a) diagnosis/treatment, (b) psychosocial coping, and (c) care of the child; (4) patient/family education should occur across the continuum of care; and (5) a supportive environment is necessary to optimize learning. Dissemination and implementation of these recommendations will set the stage for future studies that aim to develop evidence to inform best practices, and ultimately to establish the standard of care for effective patient/family education in pediatric oncology.
This study is unique in that groups of patients with similar symptoms were identified rather than groups of symptoms. Further research using latent class growth analysis is needed.
Results showed a statistically significant difference after the educational intervention for knowledge, attitudes, and behaviors. The number of conversations with patients and caregivers about palliative and end-of-life care increased significantly.
A diagnosis of childhood cancer is a life-changing event for the entire family. Parents must not only deal with the cancer diagnosis but also acquire new knowledge and skills to safely care for their child at home. Best practices for delivery of patient/family education after a new diagnosis of childhood cancer are currently unknown. The purpose of this systematic review was to evaluate the existing body of evidence to determine the current state of knowledge regarding the delivery of education to newly diagnosed pediatric oncology patients and families. Eighty-three articles regarding educational methods, content, influencing factors, and interventions for newly diagnosed pediatric patients with cancer or other chronic illnesses were systematically identified, summarized, and appraised according to the GRADE criteria. Based on the evidence, ten recommendations for practice were identified. These recommendations address delivery methods, content, influencing factors, and educational interventions for parents and siblings. Transferring these recommendations into practice may enhance the quality of education delivered by healthcare providers, and received by patients and families following a new diagnosis of childhood cancer.
As survival rates improve for pediatric cancers, increased attention has
been paid to late effects of cancer therapy, in particular, infertility.
Fertility preservation options are available for pre- and post-pubertal cancer
patients; however, many providers lack knowledge regarding options. The aim of
this document is to provide a comprehensive synthesis of current evidence and
recommendations regarding fertility preservation options for children,
adolescent, and young adults undergoing cancer treatment. A systematic search
was performed to identify fertility preservation evidence. Fifty-three studies
and four clinical guidelines were used for the review. Final recommendations
consisted of two strong and one weak recommendation for both female and male
fertility preservation options. The treatment team should be knowledgeable about
fertility preservation so that they can educate patients and families about
available fertility preservation options. It is important to consider and
discuss all available fertility options with patients at the time of
diagnosis.
Parents of children newly diagnosed with cancer must acquire new knowledge and skills in order to safely care for their child at home. Institutional variation exists in the methods and content used by nurses in providing the initial education. The goal of this project was to develop a checklist, standardized across institutions, to guide nursing education provided to parents of children newly diagnosed with cancer. A team of 21 members (19 nurses and 2 parent advocates) used current hospital educational checklists, expert consensus recommendations, and a series of iterative activities and discussions to develop one standardized checklist. The final checklist specifies primary topics that are essential to teach prior to the initial hospital discharge, secondary topics that should be discussed within the first month after the cancer diagnosis, and tertiary topics that should be discussed prior to completion of therapy. This checklist is designed to guide education and will set the stage for future studies to identify effective teaching strategies that optimize the educational process for parents of children newly diagnosed with cancer.
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