ArticleJournal of clinical nursing2023
'Never once was I thinking the c-word': Parent perspectives on the facilitators and barriers to getting a childhood cancer diagnosis.
Article in Journal of clinical nursing, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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Who cites it
8 citing papers in PubMed.
- What do we know about medical invalidation and related concepts? - A scoping review and thematic analysis about the definitions, measurements, causes, consequences and potential solutions for medical invalidation.BMC health services research · 2026Article
- "It Feels Like They Cut off My Wings": Cervical Cancer Stories and Experiences Among Middle- to Older-Age Latina Survivors in the United States.International journal of environmental research and public health · 2026Article
- The Journey with paediatric cancer: reflections on its impact on patients and their families.The Pan African medical journal · 2026Article
- Article
- "The place it puts us in emotionally and relationally with our child, it's damaging": understanding the real-world psychosocial needs of caregivers of childhood cancer survivors.Journal of cancer survivorship : research and practice · 2025Article
- The Impact of Structural and Meso-Level Factors on Caregiver Coping Abilities When Supporting a Child with Cancer: A Qualitative Study.International journal of environmental research and public health · 2024Article
- Article
- Family perspectives on the transition from active treatment to survivorship for children with cancer.Pediatric blood & cancer · 2023Article
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Authors and funding
5 authors.
Funding
Abstract
AIMS AND
objectivesTo describe the facilitators and barriers of getting from 'something's not right' to a childhood cancer diagnosis from the perspective of parents living in the United States of America.
backgroundIt is common for families to experience long trajectories from when they first notice symptoms to receiving a childhood cancer diagnosis. Understanding this trajectory within the social and cultural contexts of the United States healthcare system is the first step in developing strategies for reducing this timeframe and mitigating some of the psychosocial impact for parents in receiving a childhood cancer diagnosis. This study examines the interpretations and meanings parents attributed to their child's symptoms, their decisions regarding seeking medical care, interactions with healthcare providers and the time course of events.
designAn inductive qualitative inquiry.
methodsIn-depth, semi-structured interviews with 55 participants representing 39 unique cases of childhood cancer were conducted. Data were analysed using an inductive thematic approach. COREQ guidelines were followed.
resultsParticipants described multiple barriers and facilitators in their path to receiving a childhood cancer diagnosis. Facilitators included noticing something 'wasn't right' and physician in agreement that symptoms were unusual; acute symptoms requiring action; advocating for a diagnosis; and obtaining a second opinion. Barriers included parents having to interpret symptoms in the context of daily life; physician dismissiveness even when symptoms persisted; and not feeling they could question their physician's assessment.
conclusionFamilies experience multiple facilitators and barriers in their trajectory to receiving a childhood cancer diagnosis. RELEVANCE TO CLINICAL PRACTICE: Understanding the path to diagnosis from the parent perspective may increase opportunities for shared decision-making. Clinician educational modules that include family perspectives may improve patient/parent-provider relationships. PARTICIPANT CONTRIBUTION: Participants described their family's cancer journey through narrative storytelling. Participants had the opportunity to review and make edits to their transcript.
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