Family communication challenges of adolescents and young adults with Li-Fraumeni syndrome: Implications for psychosocial care.
Camella J Rising, Catherine Wilsnack, Patrick Boyd and 4 others
PMID 35918231WHAT IT FOUND
Adolescents and young adults with Li-Fraumeni often felt open with family, but openness shifted by topic, relationship, and time.
New diagnoses, death, and reproductive choices were hard to discuss, and some avoided talk to protect themselves or relatives.
Key findings
0187% reported being open about LFS within their families or specific family relationships.
0234% said LFS was not a frequent subject of family conversations.
0354% described difficulty broaching personal or sensitive topics such as emotions, pathways to parenthood, and death and dying.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
All participants were already enrolled in a National Cancer Institute Li-Fraumeni study, so their family communication may not match adolescents and young adults with LFS who are not in genetic testing or screening programs. Participants may have taken part because they had particularly favorable or unfavorable family communication experiences, so the themes may not represent all adolescents and young adults with LFS. The sample was predominantly female, racially homogeneous, and mostly young adults, with only 2 late adolescents, so findings may not apply to males, other racial groups, or younger teens. This is a qualitative study of experiences, so it cannot show that communication assessment or support changes distress, adjustment, or family relationships.
Declared interests
The authors report no conflicts of interest. The paper is listed as supported by NIH intramural research.
The easy way to misread this
Do not assume that family openness about Li-Fraumeni syndrome means an adolescent or young adult is ready to discuss every LFS topic. Openness was not the same across topics, relationships, or time, and 18 of 38 participants found sensitive topics difficult to broach.