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. 2022 Aug 6;22(1):1007.
doi: 10.1186/s12913-022-08372-w.

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"

Nikolett Zsuzsanna Warner  1 , AnnMarie Groarke  2
Affiliations

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"

Nikolett Zsuzsanna Warner et al. BMC Health Serv Res. .

Abstract

Background: BRCA1/2 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.

Method: This 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.

Results: Two 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.

Conclusions: These 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.

Keywords: BRCA; Experiences; HBOC; Informational Needs; Nursing; Qualitative; Thematic Analysis; Uncertainty.

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Conflict of interest statement

The authors declare that they have no competing interests.

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