Perceived racial bias and health-related stigma may be important to consider for future research investigating the psychological and physiological features of SCD for youth.
By recognizing families who continue to struggle with the diagnosis, nurses may be better equipped to approach families and evaluate their needs, including coping and adaptation. Asking parents about their experience can also lead to more appropriate and timely care and referral and allows nurses to provide care that engenders hopefulness.
Understanding parents' experiences validates the quality care and connections we make with children and families, and encourages us to consider the effects of our interactions. This underscores the importance of education and support as a means of instilling hope in parents, who are valued, critical members of their child's health care team.
This study provides a description of racial bias experiences within community and medical settings and highlights the need for further evaluation of the impact of racial bias among youth with SCD.
Purpose:
Li-Fraumeni Syndrome (LFS) is an inherited tumor predisposition syndrome with lifetime cancer risks approaching 100% and evolving risk-management strategies. This study evaluated couples’ coping with LFS-related burdens.
Research approach:
Constructivist grounded theory and anticipatory loss frameworks guided design and analysis.
Sample and methods:
Twenty-six individuals enrolled in the NCI LFS Family Study completed semi-structured interviews with their partner during annual screening visits. An interdisciplinary team completed open and focused coding to identify patterns of coping and adaptation.
Findings:
Couples described living with ambiguous danger, a state of chronic apprehension resulting from LFS-associated uncertainties. Most couples communicated openly and alternated shouldering the burden, while others engaged in protective buffering to shield each other from distress and sustain the appearance of normalcy.
Interpretation:
Optimally, coping reduces shared psychosocial distress, yet some strategies may inadvertently increase disconnection.
Implications:
Mental health support is critical for both partners coping with LFS, together and separately.
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