ArticleBMC health services research2022
A qualitative reflexive thematic analysis into the experiences of being identified with a BRCA1/2 gene alteration: "So many little, little traumas could have been avoided".
Article in BMC health services research, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
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Who cites it
7 citing papers in PubMed.
- Navigating the healthcare system with aGynecologic oncology reports · 2026Article
- "A Much Needed Specialist Service": Patient Perspectives on Hereditary Cancer Risk Psychology Service Delivery and Future Service Development.Psycho-oncology · 2026Article
- Suboptimal Adherence to Hereditary Cancer Risk Management Guidelines: A Cohort Study of High-Risk Individuals in Newfoundland and Labrador, Canada.Current oncology (Toronto, Ont.) · 2026Article
- Optimizing risk-reducing surgery and aspirin decision aids for Lynch syndrome carriers using the person-based approach: A think-aloud interview study.Journal of genetic counseling · 2025Article
- Between hope and future planning: the dementia journey for care partners through the lens of relational autonomy.BMC medical ethics · 2025Article
- Embodied engagement: fostering caring thinking in a multimodal singing-based learning environment for refugee children.Frontiers in psychology · 2025Article
- Involving patients in healthcare research is well documented but can it work in lab-based research?Research involvement and engagement · 2023Article
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Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundBRCA1/2 alterations increase females' lifetime breast cancer risk to 40 - 90%, ovarian cancer to 10 - 60%, and males' lifetime prostate cancer risk to ~ 10 - 25%. Psychosocial issues such as heightened distress can, therefore, occur in this population. This study aimed to explore the subjective experiences and needs of the BRCA1/2 alteration population in navigating cancer risk reduction measures.
methodThis study aimed to explore the experiences and identify the needs of 18 BRCA1/2 alteration carriers, recruited through strategic sampling. A public and patient panel (N = 6) collaborated on study development. Data were analysed using reflexive thematic analysis.
resultsTwo themes were identified: (i) Healthcare Services as a Burden to Navigate, and (ii) Burden Experienced Through Interactions with Healthcare Professionals. Results indicated uncertainty regarding care pathways, alongside a lack of relevant information. Participants felt unsupported by healthcare professionals, and as though healthcare professionals often perceive them as a burden.
conclusionsThese findings suggest that the quality of interactions in healthcare systems are of relevance to the BRCA1/2 alteration population, and that uncertainty surrounding access to services and information is prevalent. The establishment of specialist hereditary cancer clinics could reduce such burden.
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