Dataset Information

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".

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.

SUBMITTER: Warner NZ

PROVIDER: S-EPMC9357316 | biostudies-literature | 2022 Aug

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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".

Warner Nikolett Zsuzsanna NZ Groarke AnnMarie A

BMC health services research 20220806 1

<h4>Background</h4>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.<h4>Method</h4>This study aimed to explore the experiences and identify the needs ...[more]

PMID: 35933387

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Dataset Information

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".

Background

Method

Results

Conclusions

Publications

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".

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