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1.
Bull Hist Med ; 91(1): 94-124, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28366898

RESUMO

This article reviews adoption debates about the disclosure of children's medical history in the twentieth century, noting shifts in the prescription of how much and what to tell adoptive applicants. I look at how adoption professional debates throughout the twentieth century around the disclosure of a child's medical history reveal the ways in which these professionals tried to deal with issues of predictability, risk, adoptability, and acceptability when it came to the persistent question of disability in adoptive family making. I consider how this management is similar to and different from histories of reproduction. I argue that as child eligibility gradually expanded to include children labeled disabled, and as adoption moved from a being a parent-centered practice to a child-centered one, professionals more intensely negotiated the management and communication of disability risk as a way to both mitigate the possibility of a failed placement and to facilitate a successful one.


Assuntos
Adoção , Comunicação , Revelação/história , Pais , Pessoas com Deficiência/história , História do Século XX , Humanos , Risco , Estados Unidos
2.
J Cyst Fibros ; 22(2): 223-233, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36210323

RESUMO

BACKGROUND: As survival and health improve in people with cystic fibrosis (CF), more women with CF (wwCF) are considering their sexual and reproductive health (SRH). This study compared SRH experiences, behaviors, and care utilization of wwCF to the general population and defined CF-impacted considerations and care preferences. METHODS: We surveyed wwCF aged ≥25 years regarding SRH and compared results to the US National Survey of Family Growth (NSFG;n = 4357) and friend controls(n = 123). We used descriptive statistics and chi-squared/Fisher's exact testing and linear regression for comparisons. RESULTS: A total of 460 wwCF (mean age 36.1 years) completed the survey. WwCF were less likely to report current contraceptive use (43%vs76% NSFG, p<0.001;60% friends, p = 0.005). Nearly 25% of wwCF reported worsened CF symptoms during their menstrual cycles, 50% experienced urinary incontinence, and 80% vulvovaginal candidiasis. WwCF were significantly less likely to be parents (46%vs62% friends, p = 0.015) and to have experienced pregnancy (37%vs78% NSFG, p<0.001;58% friends, p = 0.002). More wwCF required medical assistance to conceive (29%vs12% NSFG, p<0.001 and 5% friends, p<0.001). Eighty-four percent of wwCF view their CF doctor as their main physician and 41% report no primary care provider (vs19% friends; p<0.001). WwCF report suboptimal rates of contraceptive and preconception counseling/care and are less likely to have received HPV vaccination (42%vs55%friends, p = 0.02). Despite desiring SRH conversations with their CF team, <50% report discussing SRH topics. CONCLUSION: WwCF have significantly different SRH experiences than non-CF peers. They report suboptimal SRH care compared to their preferences highlighting an urgent need to encourage SRH counseling/care in the CF model.


Assuntos
Fibrose Cística , Saúde Sexual , Gravidez , Adulto , Humanos , Feminino , Saúde Reprodutiva , Fibrose Cística/epidemiologia , Fibrose Cística/terapia , Comportamento Sexual , Anticoncepcionais
3.
Contraception ; 101(6): 420-426, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32109430

RESUMO

OBJECTIVES: To examine contraceptive use, pregnancy intention and the association of hormonal contraceptive type with adverse health outcomes among women with cystic fibrosis (CF). STUDY DESIGN: We recruited 150 women with CF, ages 18-49 from three adult CF programs to complete an online survey regarding their pregnancy and contraceptive use history. Survey findings were merged with retrospective clinical information from the CF Foundation Patient Registry (CFFPR). We used descriptive analyses to report contraceptive method and pregnancy frequencies, and logistic regression to examine the association between contraceptive method type and adverse health outcomes. RESULTS: Combined hormonal contraceptives were the most commonly used methods (42%), followed by condoms (34%), and long-acting reversible contraceptives methods (27%). Thirty-three percent (n = 50) reported ever being pregnant, half of whom reported having at least one unplanned pregnancy. We found no significant association for mucoid Pseudomonas aeruginosa infection among progestin-only (aOR 1.53, 95% CI 0.07-32.2) and estrogen-containing hormonal contraceptive users (aOR 3.9, 95 % CI 0.20-76.5). Risk of osteoporosis was elevated among women with CF who used depot-medroxyprogesterone acetate compared to non-users (OR 5.36, 95% CI 1.00-29.12). CONCLUSIONS: Both contraceptive use and unplanned pregnancy among women with CF are common. Associations between hormonal contraceptive use and adverse pulmonary or bone outcomes among women with CF are inconclusive due to the study s small sample size. Larger studies are warranted. IMPLICATIONS: Women with CF should be informed about the risks and benefits of contraceptives in the context of their disease. CFFPR data capturing contraceptive method use may be the most efficient way to elucidate the association of hormonal contraceptives on disease in women with CF.


Assuntos
Comportamento Contraceptivo/estatística & dados numéricos , Anticoncepção/métodos , Fibrose Cística/fisiopatologia , Gravidez não Planejada , Adolescente , Adulto , Preservativos/estatística & dados numéricos , Anticoncepcionais Orais Hormonais/efeitos adversos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Gravidez , Sistema de Registros , Saúde Reprodutiva , Estudos Retrospectivos , Medição de Risco , Estados Unidos , Adulto Jovem
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