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1.
Pediatr Blood Cancer ; 71(2): e30798, 2024 Feb.
Article in English | MEDLINE | ID: mdl-38053230

ABSTRACT

BACKGROUND: Individual- and population-level socioeconomic disadvantages contribute to unequal outcomes among childhood cancer survivors. Reducing health disparities requires understanding experiences of survivors from historically marginalized communities, including those with non-English language preference. PROCEDURE: We partnered with a community-based organization (CBO) serving families of children with cancer in a rural region in California with low socioeconomic status and majority Hispanic/Latino (H/L) residents. We interviewed English- and Spanish-speaking adolescent/young adult (AYA) childhood cancer survivors (≥15 years old, ≥5 years from diagnosis), parents, and CBO staff to evaluate post-treatment needs and impact of CBO support. Data were analyzed qualitatively using applied thematic analysis. Themes were refined through team discussions with our community partners. RESULTS: Twelve AYAs (11 H/L, 11 bilingual), 11 parents (eight H/L, seven non-English preferred), and seven CBO staff (five H/L, five bilingual) participated. AYAs (five female, seven male) were of median (min-max) age 20 (16-32) and 9 (5-19) years post diagnosis; parents (nine female, two male) were age 48 (40-60) and 14 (6-23) years post child's diagnosis. Themes included challenges navigating healthcare, communication barriers among the parent-AYA-clinician triad, and lasting effects of childhood cancer on family dynamics and mental health. Subthemes illustrated that language and rurality may contribute to health disparities. CBO support impacted families by serving as a safety-net, fostering community, and facilitating H/L families' communication. CONCLUSIONS: Childhood cancer has long-lasting effects on families, and those with non-English language preference face additional burdens. Community-based support buffers some of the negative effects of childhood cancer and may reduce disparities.


Subject(s)
Health Inequities , Neoplasms , Adolescent , Adult , Child , Female , Humans , Male , Middle Aged , Young Adult , Family/psychology , Hispanic or Latino/psychology , Neoplasms/therapy , Parents/psychology , Qualitative Research , Vulnerable Populations , Socioeconomic Factors , Cancer Survivors
3.
Clin Breast Cancer ; 23(3): 317-323, 2023 04.
Article in English | MEDLINE | ID: mdl-36628811

ABSTRACT

BACKGROUND: Young women with breast cancer who carry germline genetic pathogenic variants may face distinct fertility concerns, yet limited data exist comparing fertility preferences and practices between carriers and noncarriers. PATIENTS AND METHODS: Participants in the Young Women's Breast Cancer Study (NCT01468246), a prospective cohort of women diagnosed with breast cancer at ≤40 years, who completed a modified Fertility Issues Survey were included in this analysis. RESULTS: Of 1052 eligible participants, 118 (11%) tested positive for a pathogenic variant. Similar proportions (P = .23) of carriers (46%, [54/118]) and noncarriers (37%, [346/934]) desired more biologic children prediagnosis, and desire decreased similarly postdiagnosis (carriers, 30% [35/118] vs. noncarriers, 26% [244/934], P = .35). Among those desiring children postdiagnosis (n = 279), concern about cancer risk heritability was more common among carriers (74% [26/35] vs. noncarriers, 36% [88/244], P < .01). Carriers were more likely to report that concern about cancer risk heritability contributed to a lack of certainty or interest in future pregnancies (20% [16/81] vs. noncarriers, 7% [49/674], P = .001). Similar proportions (P = .65) of carriers (36% [43/118]) and noncarriers (38% [351/934]) were somewhat or very concerned about infertility post-treatment; utilization of fertility preservation strategies was also similar (carriers, 14% [17/118] vs. noncarriers, 12% [113/934], P = .78). CONCLUSION: Carriers were similarly concerned about future fertility and as likely to pursue fertility preservation as noncarriers. Concern about cancer risk heritability was more frequent among carriers and impacted decisions not to pursue future pregnancies for some, underscoring the importance of counseling regarding strategies to prevent transmission to offspring, including preimplantation genetic testing.


Subject(s)
Breast Neoplasms , Child , Female , Humans , BRCA1 Protein/genetics , BRCA2 Protein/genetics , Breast Neoplasms/diagnosis , Breast Neoplasms/genetics , Breast Neoplasms/pathology , Fertility , Genetic Predisposition to Disease , Germ Cells/pathology , Heterozygote , Mutation , Prospective Studies
4.
Nat Commun ; 11(1): 70, 2020 01 07.
Article in English | MEDLINE | ID: mdl-31911610

ABSTRACT

Vertical transmission accounts for most human immunodeficiency virus (HIV) infection in children, and treatments for newborns are needed to abrogate infection or limit disease progression. We showed previously that short-term broadly neutralizing antibody (bNAb) therapy given 24 h after oral exposure cleared simian-human immunodeficiency virus (SHIV) in a macaque model of perinatal infection. Here, we report that all infants given either a single dose of bNAbs at 30 h, or a 21-day triple-drug ART regimen at 48 h, are aviremic with almost no virus in tissues. In contrast, bNAb treatment beginning at 48 h leads to tight control without adaptive immune responses in half of animals. We conclude that both bNAbs and ART mediate effective post-exposure prophylaxis in infant macaques within 30-48 h of oral SHIV exposure. Our findings suggest that optimizing the treatment regimen may extend the window of opportunity for preventing perinatal HIV infection when treatment is delayed.


Subject(s)
Anti-HIV Agents/administration & dosage , Antibodies, Neutralizing/administration & dosage , HIV Antibodies/administration & dosage , Infectious Disease Transmission, Vertical/prevention & control , Simian Acquired Immunodeficiency Syndrome/prevention & control , Adaptive Immunity , Animals , Disease Models, Animal , Female , HIV Infections/immunology , HIV Infections/prevention & control , HIV Infections/transmission , HIV-1/immunology , HIV-1/physiology , Humans , Macaca , Macaca mulatta , Male , Post-Exposure Prophylaxis , Simian Acquired Immunodeficiency Syndrome/immunology , Simian Acquired Immunodeficiency Syndrome/transmission , Simian Immunodeficiency Virus/immunology , Simian Immunodeficiency Virus/physiology
5.
Midwifery ; 62: 29-35, 2018 Jul.
Article in English | MEDLINE | ID: mdl-29631201

ABSTRACT

BACKGROUND: Unintended pregnancy is associated with poor maternal and child health outcomes. To improve the health and wellbeing of women during the antenatal period, additional research in settings where unintended pregnancies are common is required to better understand the impact of the pregnancy on women's emotional health, relationships, and support structures. OBJECTIVE: To examine the personal, social and economic factors shaping the antenatal experiences of women in a resource-constrained setting with high rates of unintended pregnancy and HIV. RESEARCH DESIGN AND SETTING: Qualitative, semi-structured interviews were conducted with 30 women from an urban informal settlement in KwaZulu-Natal, South Africa, who had given birth within the last six weeks. FINDINGS: Most participants (n = 27, 90%) reported that their pregnancy had not been planned. Unintended pregnancy marked a period of heightened stress and vulnerability for many participants due to increased financial strain, HIV status, and trauma associated with past or current violence. Family members and sexual partners could mitigate financial stress and be sources of emotional and material support during the antenatal period. However, participants frequently experienced increased instability and conflict in sexual partner and family relationships due to the unintended pregnancy, exacerbating women's stress. KEY CONCLUSIONS: A nuanced understanding of the factors shaping women's emotional responses to an unintended pregnancy may aid in identification of women who are most likely to experience high levels of antenatal stress and to prioritize these women for intervention in order to prevent associated poor maternal and child health outcomes.


Subject(s)
Interpersonal Relations , Pregnancy, Unplanned/psychology , Sexual Partners/psychology , Social Support , Adult , Community Health Centers/organization & administration , Family Relations/psychology , Female , Humans , Interviews as Topic/methods , Pregnancy , Qualitative Research , South Africa
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