Parents/guardians of adolescents and young adults with epilepsy and intellectual disabilities prefer more frequent, neurologist-initiated, comprehensive conversations surrounding sexual and reproductive health, particularly emphasizing menstruation and sexual abuse recognition/prevention.
Dr. Traci Kazmerski and her team co-developed with patients, parents or caregivers, and multi-disciplinary healthcare providers who care for this population an online patient education materials about epilepsy for adolescent and young adult females with epilepsy. This work is a structured and reproducible methodology that could inform future educational intervention development in epilepsy.
In a recent study, Dr. Traci Kazmerski and her team found that early height, but not early weight-for-length/body mass index trajectories, may be associated with pubertal growth outcomes. Cystic fibrosis transmembrane conductance regulator modulator therapy shows the potential to improve pubertal growth outcomes, but further research is necessary.
Read more about their findings here: https://pubmed.ncbi.nlm.nih.gov/37981481/
Drs. Laura Kirkpatrick and Traci Kazmerski conducted a retrospective textual analysis of sexual and reproductive health (SRH) counseling clinical notes for adolescent and young adult people with epilepsy of gestational capacity. They found that child neurologists counsel on SRH topics less frequently than recommended according to the The American Academy of Neurology.
Read more about their findings here: https://pubmed.ncbi.nlm.nih.gov/37348408/
Dr. Martina Anto-Ocrah and her team conducted a review of 1045 studies, 16 of which were included. They found that comprehensive sexuality education between parents and adolescents is lacking in Africa south of the Sahara, depriving young people of critical sexual health information.
Read more about their findings here: https://pubmed.ncbi.nlm.nih.gov/37051962/
Dr. Liz Mosely and her team evaluated an integrated prevention program to address substance use, sexual assault, and sexual risk behaviors in teens called 'Teen Well Check'.
Findings suggest preliminary usability and acceptability.
Read more here: https://www.tandfonline.com/doi/full/10.1080/20008066.2022.2157933
Drs. Ashley Hill and Natacha De Genna qualitatively examined coping mechanisms and desired supports in pregnant and birthing Black and biracial adolescent and young adult women during the COVID-19 pandemic. Their team found that nearly half the interviewees reported mental health symptoms consistent with postpartum depression and that several were afraid to disclose their symptoms to a healthcare provider due to fear of child protective services involvement and their belief they would be treated unfairly because of their race.
Individuals who chose adoption after adolescent pregnancy described positive and negative encounters with health care and adoption professionals that could serve as targets to improve the overall care experience for this population.
Dr. Miller's Pittsburgh Study offers an example of centering community members, their voices, and their experiences to improve child and adolescent thriving and racial equity.
Dr. Liz Miller's recent research shows that nonbinary and transmasculine adolescents are experiencing more non-affirming health care experiences than transfeminine adolescents. These negative and non-affirming experiences create health care and well visit avoidance. Healthcare systems need to address their disrespect and refusal of care as well as proactively train and educate their providers to support the transcommunity with competent and affirming care.
