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1.
J Sport Rehabil ; 33(4): 225-230, 2024 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-38412853

RESUMO

CONTEXT: In March 2020, public health concerns resulted in school closure throughout the United States. The prolonged sport cessation may affect knee injury risk in high school athletes. The purpose of this study was to describe and compare risk of knee injuries in high school athletes during 2019-2020 and 2020-2021 academic years, and stratify by gender, severity, mechanism of injury, injury type, and knee anatomic region. DESIGN: Historical-prospective cohort study. METHODS: This historical-prospective cohort study included 176 schools in 6 states matched by sport participation in control and COVID years from July 1, 2019 to June 30, 2021. Injury rates per 1000 athletes per year were calculated with 95% confidence intervals. A negative binomial regression was performed to assess potential differences in knee injuries between academic years. RESULTS: 94,847 and 72,521 high school athletes participated in the 2019-2020 (19-20) and 2020-2021 (20-21) seasons. Knee injury risk was higher in the 20-21 season (19-20: 28.89% [27.82-29.96]; 20-21: 33.82% [32.50-35.14]). Risk increased for male athletes from 2019-2020 to 2020-2021 (19-20: 29.42% [28.01-30.83]; 20-21: 40.32% [38.89-41.75]). Female knee injury risk was similar between years (19-20: 25.78% [24.29-27.27]; 20-21: 26.03% [24.31-27.75]). Knee injuries increased by a ratio of 1.2 ([95% CI, 1.1-1.3], P < .001) during 2020-2021. CONCLUSIONS: Knee injury risk and relative risk increased among males in 2020-2021. Results indicate changes in knee injury risk following return from COVID shelter in place among high school athletes and implicate potential negative downstream effects of interrupted sports training and participation on high school injury risk.


Assuntos
Traumatismos em Atletas , Traumatismos do Joelho , Humanos , Adolescente , Traumatismos do Joelho/epidemiologia , Masculino , Feminino , Estudos Prospectivos , Traumatismos em Atletas/epidemiologia , Estados Unidos/epidemiologia , Instituições Acadêmicas , Fatores de Risco , Atletas , COVID-19/epidemiologia , Fatores Sexuais
2.
AIDS Care ; 35(3): 447-452, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36285336

RESUMO

Evidence suggests an increasing number of US families are adopting internationally born children with HIV (IACH). Little is known about the experiences of adoptive parents, particularly how they help children navigate adolescence. Many adopted children may have additional needs as they mature into adolescence. Forty-four parents of 51 IACH were recruited from three pediatric infectious disease clinics and social media sites. The majority identified as white (n = 43), Christian (n = 38), and female (n = 43). Mean age of adoptees was 10.1 years (range 3-19, 33 females, 25 from African countries, and Russia, Ukraine, China, Haiti, Columbia, Estonia). Participants completed semi-structured audio-recorded interviews focused on experienced and potential challenges as their child matures. Interviews were coded for emergent themes. Findings identified universal concerns about sexuality. Some parents had not yet discussed sex with their child due to age/level of maturity. Others stated they had "the talk" and some emphasized the importance of abstinence before marriage while others highlighted the importance of comprehensive sex education and open communication. Finally, parents acknowledged that HIV was a manageable illness and hoped their children lived long healthy lives. Medical and mental health clinicians can support families as their child transitions into adolescence.


Assuntos
Infecções por HIV , Criança , Humanos , Adolescente , Feminino , Pré-Escolar , Infecções por HIV/psicologia , HIV , Saúde Reprodutiva , Pesquisa Qualitativa , Pais/psicologia
3.
Child Care Health Dev ; 49(6): 1046-1053, 2023 11.
Artigo em Inglês | MEDLINE | ID: mdl-36905081

RESUMO

BACKGROUND: Previous literature has explored parent/caregiver perspectives and satisfaction with the health care transition (HCT) process for their adolescents and young adults with special health care needs (AYASHCN). Limited research has explored the opinion of health care providers and researchers on parent/caregiver outcomes associated with a successful HCT for AYASHCN. METHODS: A web-based survey was distributed through the international and interdisciplinary Health Care Transition Research Consortium listserv, which at the time of the survey was composed of 148 providers dedicated to optimizing the HCT of AYAHSCN. Participants responded to the open-ended question, 'What parent/caregiver-related outcome(s) would represent a successful healthcare transition?' Respondents included 109 providers (52 health care professionals, 38 social service professionals and 19 other). Responses were coded for emergent themes, and research suggestions were identified. RESULTS: Qualitative analyses identified two major themes: emotion- and behaviour-based outcomes. Emotion-based subthemes included relinquishing control of child's health management (n = 50, 45.9%) as well as parental satisfaction and confidence in their child's care and HCT (n = 42, 38.5%). Respondents also noted that parents/caregivers should experience an improved sense of well-being and decreased stress (n = 9, 8.2%) due to a successful HCT. Behaviour-based outcomes included early preparation and planning for HCT (n = 12, 11.0%) and parental instruction on the knowledge and skills necessary for their adolescent to independently manage their health (n = 10, 9.1%). CONCLUSIONS: Health care providers can assist parents/caregivers in learning strategies for instructing their AYASHCN about condition-related knowledge and skills as well as provide support for 'letting go' of the caregiver role during the HCT to adult-focused health services and adulthood. Communication between the AYASCH, their parents/caregivers and paediatric- and adult-focused providers needs to be consistent and comprehensive to ensure continuity of care and a successful HCT. We also offered strategies to address the outcomes suggested by the participants of this study.


Assuntos
Transição para Assistência do Adulto , Humanos , Adolescente , Criança , Adulto Jovem , Cuidadores , Transferência de Pacientes , Atenção à Saúde , Pais
4.
AIDS Care ; 33(10): 1363-1367, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-32741214

RESUMO

An increasing number of U.S. families are adopting children with HIV born outside the country. This exploratory qualitative study seeks to understand providers' perspectives on international adoptee and family preparation and adjustment to life in the U.S. Eleven psychosocial and five medical care providers participated in hour-long, semi-structured, recorded interviews focused on their experiences caring for internationally adopted children with HIV (IACH) and their adoptive parents. Transcribed interviews were analyzed to identify emergent themes. Providers described considerable variation among families who adopted children. Some had grown biological children and several adopted multiple children with special needs. Most were connected to communities of faith which served as an inspiration to adopt and offered support. Serious medical and HIV-related issues were minimal. Psychosocial concerns were more common and included attachment, adjustment, and behavioral issues. Participants noted that adoptive parents were well informed about HIV, but less prepared for cognitive delays and emotional challenges. Some providers experienced or expected to have challenges offering sexual and reproductive health education to adolescents due to their adoptive parents' religious beliefs on sexuality. Additional support managing behavioral and emotional challenges, as well as sexual education, may be needed especially as IACH transition into adolescence and young adulthood.


Assuntos
Infecções por HIV , Adolescente , Adoção , Adulto , Criança , Infecções por HIV/terapia , Humanos , Pais , Pesquisa Qualitativa , Comportamento Sexual , Adulto Jovem
5.
BMC Pregnancy Childbirth ; 19(1): 345, 2019 Oct 10.
Artigo em Inglês | MEDLINE | ID: mdl-31601193

RESUMO

BACKGROUND: The benefits of family-centered care for the health and well-being of preterm infants and their families include increased parent-infant closeness, improved lactation, and positive mental health outcomes; however, it is known that the extent to which family-centered care is adopted varies by unit. This study aimed to understand how differences in neonatal care culture in two units in Finland and the U.S. were translated to parents' infant feeding experiences in the hope of improving relationally focused feeding practices in both locations. METHODS: This qualitative, cross-sectional study utilized narrative methodologies to understand the lived experiences of 15 families hospitalized in a tertiary neonatal intensive care unit in Finland (n = 8) and the U. S (n = 7). RESULTS: A global theme of lactation as a means or an end showed that lactation and infant feeding were framed differently in each location. The three supporting themes that explain families' perceptions of their transition to parenthood, support as a family unit, and experience with lactation include: universal early postnatal challenges; culture and space-dependent nursing support; and controlled or empowering breastfeeding experiences. CONCLUSIONS: Care culture plays a large role in framing all infant caring activities, including lactation and infant feeding. This study found that in the unit in Finland, breastfeeding was one method to achieve closeness with an infant, while in the unit in the U.S., pumping was only an end to promote infant nutritional health. Therefore, breastfeeding coupled with closeness was found to be supportive of a salutogenic, or health-promoting, care approach for the whole family.


Assuntos
Aleitamento Materno , Extração de Leite , Métodos de Alimentação , Unidades de Terapia Intensiva Neonatal/organização & administração , Adulto , Comparação Transcultural , Enfermagem Familiar/organização & administração , Feminino , Finlândia , Arquitetura Hospitalar , Humanos , Lactente Extremamente Prematuro , Recém-Nascido , Recém-Nascido Prematuro , Lactação , Masculino , Enfermagem Neonatal/organização & administração , Cultura Organizacional , Pais , Pesquisa Qualitativa , Centros de Atenção Terciária , Estados Unidos , Adulto Jovem
6.
BMC Health Serv Res ; 19(1): 563, 2019 Aug 13.
Artigo em Inglês | MEDLINE | ID: mdl-31409336

RESUMO

BACKGROUND: Community health workers, known as Village Health Teams (VHTs) in Uganda, play a central role in increasing access to community-based health services. The objective of this research is to explore tensions that may emerge as VHTs navigate multiple roles as community members and care providers particularly when providing sensitive reproductive health and HIV care. METHODS: Twenty-five VHTs from a rural clinic in Uganda completed semi-structured interviews focused on experiences providing services. Interview questions focused on challenges VHTs face providing services and strategies for improving quality care. After translation from Luganda and transcription, interviews were analyzed using content analysis to identify emergent themes. RESULTS: Most VHTs were female (n = 16). The average age was 46, and average length of VHT work, 11 years. Analyses revealed that all VHTs capitalized upon the duality of their position, shifting roles depending upon context. Three themes emerged around VHTs' perceptions of their roles: community insiders, professional outsiders, and intermediaries. A caregiver "insider" role facilitated rapport and discussion of sensitive issues. As community members, VHTs leveraged existing community structures to educate clients in familiar settings such as "drinking places". However, this role posed challenges as some VHTs felt compelled to share their own resources including food and transport money. Occupying a professional outsider role offered VHTs respect. Their specialized knowledge gave them authority to counsel others on effective forms of family planning. However, some VHTs faced opposition, suspicions about their motives, and violence in this role. In balancing these two roles, the VHTs adopted a third as intermediaries, connecting the community to services in the formalized health care system. Participants suggested that additional training, ongoing supervision, and the opportunity to collaborate with other VHTs would help them better navigate their different roles and, ultimately, improve the quality of service. CONCLUSIONS: As countries scale up family planning and HIV services using VHTs, supportive supervision and ethical dilemma training are recommended so VHTs are prepared for the challenges of assuming multiple roles within communities.


Assuntos
Agentes Comunitários de Saúde/organização & administração , Qualidade da Assistência à Saúde/normas , Serviços de Saúde Reprodutiva/organização & administração , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Negociação , Pesquisa Qualitativa , Serviços de Saúde Reprodutiva/normas , População Rural , Uganda
7.
AIDS Care ; 30(2): 178-181, 2018 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-28639838

RESUMO

Historically, children with perinatally-acquired HIV (PHIV) were viewed as the "innocent victims" as their HIV infection was not acquired through sexual/drug related means. Today, adolescents with PHIV are surviving into young adulthood and are engaging in developmentally expected behaviors such as establishing intimate, sexual relationships. Like other youth, those living with PHIV often need to access sexual and reproductive health (SRH) services. Previous research has documented stigma and discrimination experienced by adult women living with HIV as they try to access SRH care. However, little is known about the experiences of stigma and discrimination encountered by the maturing adolescents and young adults (AYA) with PHIV when accessing services. HIV health care providers (HHCPs) who frequently care for this population are in a unique position to learn about and understand the stigma and discrimination experienced by their patients in formal service settings. HHCPs (n = 57, 28 medical and 29 social service providers) were recruited using snowball sampling, and completed an online survey based on patient-shared experiences of stigma and discrimination when accessing SRH-related health care and social services. Thirty-eight percent (22/57) of providers reported that their patients with PHIV had shared encounters of stigma or discrimination when accessing SRH services. Coded open-ended provider comments indicated that AYA patients experienced challenges with providers who were unfamiliar with PHIV and expressed surprise that someone with PHIV was still alive. Analyses also revealed prejudicial attitudes towards women with HIV. Patients reported being counseled to terminate their pregnancy and lectured about their "poor choices." As AYA with PHIV transition out of pediatric and adolescent care, it is important for providers to simultaneously help them navigate care in other health settings, as well as educate adult health care providers about possible misconceptions of caring for individuals with PHIV.


Assuntos
Discriminação Psicológica , Infecções por HIV/psicologia , Pessoal de Saúde/psicologia , Acessibilidade aos Serviços de Saúde , Serviços de Saúde Reprodutiva/estatística & dados numéricos , Saúde Reprodutiva , Comportamento Sexual , Estigma Social , Adolescente , Adulto , Criança , Feminino , Infecções por HIV/congênito , Humanos , Relações Interpessoais , Percepção , Pesquisa Qualitativa , Saúde Sexual , Adulto Jovem
8.
J Pediatr Nurs ; 30(5): 684-90, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-26117807

RESUMO

Youth with perinatally-acquired HIV infection (PHIV) routinely survive into adulthood requiring transition to adult care. Research underscores the importance of assessing transition perspective congruence between adolescents and guardians. Interviews focused on transition decisions were conducted with 18 adolescents with PHIV and their guardians recruited from a southeastern US pediatric infectious disease clinic. Transcribed responses were coded as congruent or divergent. Adolescents and guardians held congruent views that the transition process had not started. Fewer dyads agreed upon the level of adolescent and guardian involvement in transition decisions. Providers should assess congruence of adolescent and guardian perspectives regarding transition-related decisions.


Assuntos
Infecções por HIV/terapia , Infecções por HIV/transmissão , Transmissão Vertical de Doenças Infecciosas , Transição para Assistência do Adulto/organização & administração , Cuidado Transicional/organização & administração , Adolescente , Feminino , Infecções por HIV/diagnóstico , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Recém-Nascido , Relações Interpessoais , Entrevistas como Assunto , Tutores Legais/psicologia , Masculino , Cooperação do Paciente/estatística & dados numéricos , Educação de Pacientes como Assunto/organização & administração , Avaliação de Programas e Projetos de Saúde , Pesquisa Qualitativa , Medição de Risco , Estados Unidos
9.
Matern Child Health J ; 17(5): 797-808, 2013 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-22736033

RESUMO

With widespread access to antiretroviral therapy in the United States, many perinatally HIV-infected (PHIV+) children are surviving into adolescence and adulthood, becoming sexually active and making decisions about their reproductive health. The literature focusing on the reproductive decisions of individuals behaviorally infected with HIV can serve as a springboard for understanding the decision-making process of PHIV+ youth. Yet, there are many differences that critically distinguish reproductive health and related decision-making of PHIV+ youth. Given the potential public health implications of their reproductive decisions, better understanding of factors influencing the decision-making process is needed to help inform the development of salient treatment and prevention interventions. To begin addressing this understudied area, a "think tank" session, comprised of clinicians, medical providers, and researchers with expertise in the area of adolescent HIV, was held in Bethesda, MD, on September 21, 2011. The focus was to explore what is known about factors that influence the reproductive decision-making of PHIV+ adolescents and young adults, determine what important data are needed in order to develop appropriate intervention for PHIV+ youth having children, and to recommend future directions for the field in terms of designing and carrying out collaborative studies. In this report, we summarize the findings from this meeting. The paper is organized around the key themes that emerged, including utilizing a developmental perspective to create an operational definition of reproductive decision-making, integration of psychosocial services with medical management, and how to design future research studies. Case examples are presented and model program components proposed.


Assuntos
Tomada de Decisões , Infecções por HIV/prevenção & controle , Infecções por HIV/psicologia , Transmissão Vertical de Doenças Infecciosas/prevenção & controle , Comportamento Sexual , Adolescente , Infecções por HIV/transmissão , Comportamentos Relacionados com a Saúde , Humanos , Masculino , Cuidado Pré-Concepcional , Saúde Reprodutiva , Revelação da Verdade , Estados Unidos , Adulto Jovem
10.
Front Public Health ; 11: 1091335, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37006538

RESUMO

Background: The number of internationally adopted children living with perinatally-acquired HIV (IACP) in the U.S. is increasing, yet little is known about their families' experiences navigating HIV disclosure within a community context. This paper examines the lived experiences of adoptive parents as they navigate HIV disclosure and manage stigma toward their adopted children within their broader communities. Methods: A purposive sample of parents of IACP was recruited at two pediatric infectious disease clinics and via closed Facebook groups. Parents completed two semi-structured interviews approximately one year apart. Interview questions included strategies parents used to reduce the impact of community level stigma that their child is likely to encounter as they mature. Interviews were analyzed using Sort and Sift, Think and Shift analytic approach. All parents (n = 24) identified as white and most (n = 17) had interracial families, with children adopted from 11 different countries (range: age at adoption 1-15 years; range: age at first interview 2-19 years). Results: Analyses revealed that parents serve as advocates for their child by both supporting more public HIV disclosure at times, but also applying indirect strategies such as working to improve outdated sex education material. Knowledge of HIV disclosure laws empowered parents to make informed decisions about who, if anyone, in the community needed to know their child's HIV status. Conclusion: Families with IACP would benefit from HIV disclosure support/training and community-based HIV stigma reduction interventions.


Assuntos
Criança Adotada , Infecções por HIV , Humanos , Criança , Lactente , Pré-Escolar , Adolescente , Adulto Jovem , Adulto , Revelação , Pesquisa Qualitativa , Pais
11.
Artigo em Inglês | MEDLINE | ID: mdl-36833690

RESUMO

Though Hispanic youth with perinatally acquired HIV (PHIV) comprise 14% of those living with PHIV, little research has documented their lived experiences. Eighteen Hispanic adolescents and young adults (AYA) with PHIV were recruited from two pediatric infectious disease clinics in California (mean age = 20.8 years, 12 females and 6 males). Interview transcripts were analyzed for emergent themes regarding relationships, childbearing intentions, and future career aspirations. Participants acknowledged HIV as cause for rejection and fear of transmission from partners. Most desired children in the future. Those with children (n = 7) expressed a strong desire to continue their education for the benefit of their children. Many did not view HIV as a barrier to their career aspirations. HIV influenced their daily lives. However, the challenges of poverty, loss, and trauma also significantly shaped their well-being. Health care providers offered emotional and instrumental support which helped AYA make progress towards their goals.


Assuntos
Infecções por HIV , Adolescente , Feminino , Humanos , Masculino , Adulto Jovem , Hispânico ou Latino , Infecções por HIV/psicologia , Transmissão Vertical de Doenças Infecciosas , Pobreza
12.
Fam Syst Health ; 40(2): 232-238, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35666896

RESUMO

INTRODUCTION: Youth with perinatally-acquired HIV (PHIV) are living well into young adulthood. There has been extensive research on the social impacts of PHIV on adolescents and young adults (AYA). However, little research has examined their broader family system. This qualitative exploratory project examined the perspectives of caregivers raising AYA with PHIV. METHOD: Eighteen caregivers who cared for adolescents and young adults with PHIV over the age of 14 completed semistructured audio-recorded interviews. Questions focused on salient aspects of adolescent development and parenting experiences over the course of their child's life. Transcripts were coded for emergent themes. RESULTS: Past and present caregiving experiences were consistently contextualized by the stigmatized nature of HIV. Daily concerns related to medication adherence and sexual behavior were common. Future-oriented expectations were marked by hope, as well as an acknowledgment of continued struggle. DISCUSSION: Negative experiences with the health care system underscore the need for ongoing education about HIV-related stigma. Findings suggest that caregivers, like other parents of typically developing youth, may need support addressing sexuality. Additionally, caregivers expressed concerns over the appropriate levels of supervision to offer their AYA as they assumed more responsibility for their own health. Collaboration among psychosocial and health care professionals to identify support strategies will benefit both caregivers and AYA living with PHIV. (PsycInfo Database Record (c) 2022 APA, all rights reserved).


Assuntos
Infecções por HIV , Poder Familiar , Adolescente , Infecções por HIV/psicologia , Infecções por HIV/transmissão , Humanos , Transmissão Vertical de Doenças Infecciosas , Poder Familiar/psicologia , Comportamento Sexual/psicologia , Estigma Social , Adulto Jovem
13.
AIDS Care ; 23(8): 965-70, 2011 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-21390882

RESUMO

Rates of HIV infection among adolescents in the US continues to rise, resulting in more individuals who must eventually transition from pediatric to adult care. It is critical that this process go smoothly to ensure continuity of care and to maximize patient outcomes. While research has examined youths' experiences with the transition process, disease-specific indicators of successful transition from pediatric to adult care remain undefined. Identifying indicators will facilitate the evaluation of transition processes, and, ultimately, the empirical determination of best practices. Interviews were conducted with 19 professionals who provide care for children and adults with HIV in southeastern state in the US. Approximately half of the providers self-identified as pediatric care providers. Nine of those interviewed were nurses and physicians and 10 were social workers. Providers had been working in the field of HIV for an average of 11.2 years. Interviews were taped, transcribed, and coded for emergent themes. Providers who care for HIV-infected youth identified both behavior and seriologic indicators of succesful transitions. Behavioral indicators identified were keeping appointments, medication adherence, and demonstrating ownership of medical care. Providers also identified serological markers of a succesful transition, specifically,viral load and CD4 count. Findings provided valuable insight into the perspectives of infectious disease care providers on indicators of successful transition from pediatric to adult care for adolescents with HIV. This is an important first step in developing empirical evaluation measures for transition practices and models. Similar research should be conducted with other groups of providers to assess the generalizability of these findings. Additionally, future research should seek to operationalize the identified behavioral indicators and determine appropriate values to indicate success for all indicators.


Assuntos
Continuidade da Assistência ao Paciente/tendências , Atenção à Saúde/organização & administração , Infecções por HIV/terapia , Pessoal de Saúde/psicologia , Planejamento de Assistência ao Paciente , Adolescente , Adulto , Criança , Continuidade da Assistência ao Paciente/organização & administração , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Pessoal de Saúde/organização & administração , Humanos , Entrevistas como Assunto , Masculino , Indicadores de Qualidade em Assistência à Saúde
14.
J Midwifery Womens Health ; 66(5): 597-603, 2021 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-34549511

RESUMO

INTRODUCTION: Birth stories area source of information and vicarious experience for nulliparous women. Although health disparities research suggests that the childbirth experiences of Black women differ from those of white women, little research has been conducted about the nature of birth stories shared and their subsequent effect on expectations. METHODS: Pregnant nulliparous Black women were recruited from a women's health practice in the southeastern United States. Participants completed in-depth semistructured interviews about the birth stories they had previously heard and their thoughts about their own upcoming birth experiences. Interviews were audio-recorded and transcribed. Researchers applied the traditions of thematic analysis to identify emergent themes. RESULTS: Fourteen women participated in the study (mean age, 28 years). Women reported hearing birth stories from a variety of sources, most commonly mothers and friends. Stories heard generally included details about process, outcome, and social context that often acknowledged past racist hospital policies and experienced discrimination. Women were an active audience to birth stories and sought out stories from some sources, avoided stories from other sources, and used rhetorical strategies to mark stories as either more relatable or less relatable. Women's reported fears, expectations, and choices they planned to make reflected features of the birth stories that they had heard. DISCUSSION: Nulliparous women accessed and evaluated birth stories from others and applied knowledge received from those stories to their own experiences. Birth stories played an important role in shaping women's hopes, fears, expectations, and childbirth-related choices. Health care providers should inquire about the birth stories shared with their patients to gain a sense of their childbirth desires and expectations. An appreciation for the importance of knowledge learned from birth stories has the potential to reduce maternal health disparities by improving patient-provider communication through a shared understanding of the patient's goals and fears.


Assuntos
Motivação , Parto , Adulto , Parto Obstétrico , Medo , Feminino , Humanos , Gravidez , Gestantes
15.
Artigo em Inglês | MEDLINE | ID: mdl-34205273

RESUMO

This study investigated the role of social support in self-management within education/employment settings for young adults (YA) with end-stage renal disease (ESRD) as well as barriers and facilitators to social support formation. Nineteen YA with ESRD (mean age 24 years, 10 males, 9 African American) recruited from a pediatric nephrology clinic in the Southeast United States completed in-person semi-structured interviews. The grounded theory was used to analyze transcribed interviews to identify emergent themes. Absences hindered participants' school/work attendance and performance. Social support was necessary for illness management and success in academic/vocational settings. Facilitators to establishing support included self-awareness and view of disclosure as a way to access accommodations. Barriers included fear of judgment, job loss, and the belief that the condition was too personal to disclose. Educators and employers must acknowledge the needs of YA with ESRD to promote development and educational/vocational success. Fear of disclosure and poor disease self-management interferes with accessing social support. Communication skills and autonomy in patients' medical and personal lives can promote success in education and employment settings.


Assuntos
Emprego , Falência Renal Crônica , Adulto , Criança , Humanos , Falência Renal Crônica/terapia , Masculino , Pesquisa Qualitativa , Apoio Social , Sudeste dos Estados Unidos , Adulto Jovem
16.
Children (Basel) ; 8(11)2021 Nov 12.
Artigo em Inglês | MEDLINE | ID: mdl-34828757

RESUMO

One of the Standards of Psychosocial Care for Children with Cancer and their Families recommends that all youth with cancer and their family members have access to psychotherapeutic interventions and support throughout the cancer trajectory. This study was created to identify the psychosocial interventions and services provided to children with cancer and their family members, to ascertain whether there are differences in interventions provided by age of the patient and stage of treatment, and to learn about barriers to psychosocial service provision. An online survey was disseminated to psychosocial providers through the listservs of national and international professional organizations. The majority of the 242 respondents were either psychologists (39.3%) or social workers (26.9%) and 79.7% worked in the United States. The intervention offered most often to pediatric patients, caregivers, and siblings, at every stage of treatment, was psychoeducation (41.7-48.8%). Evidence-based interventions, including cognitive behavioral therapy (56.6%) and mindfulness-based interventions (57.9%) were reported to be frequently used with patients. Interventions designed specifically for the pediatric oncology population were not commonly endorsed. Psychosocial providers reported quality of care would be improved by additional staff, better communication/collaboration with medical team members and increased community-based resources. Future research should focus on improving accessibility to population-specific evidenced-based interventions and translating science to practice.

17.
Psychol Health Med ; 15(5): 515-27, 2010 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-20835962

RESUMO

Recently, national attention has been drawn to the increasing number of adolescents infected with HIV in the US, particularly in the South. According to the Center for Disease Control and Prevention (2007), at least 50% of new HIV infections occur in persons 15-25 years of age, and the majority of these persons are likely infected in their teens. Adolescents with HIV present new challenges to health and social-service providers. Infected teens are typically identified and initially followed by pediatricians and pediatric staff upon diagnosis. The transition to adult infectious disease care can be difficult due to the increased responsibility for self-care and monitoring placed on the young adult. Interviews were conducted with 19 professionals who provide care for children and adults with HIV in North Carolina in order to identify the best practices for transition to adult care. Approximately half of the providers self-identified as pediatric care providers. Nine of those interviewed were nurses and physicians and 10 were social workers. Interviews were transcribed and emergent themes were identified. Findings indicate that promoting medical independence among adolescents, close communication between pediatric and adult providers, and addressing system level concerns, including helping patients' families navigate health insurance and other social services, as well as having a separate clinic for adolescents with HIV, constitute best practices for transitioning youth with HIV from pediatric to adult care.


Assuntos
Continuidade da Assistência ao Paciente/organização & administração , Prática Clínica Baseada em Evidências , Soropositividade para HIV , Pessoal de Saúde , Infectologia , Adulto , Feminino , Humanos , Entrevistas como Assunto , Masculino , North Carolina , Atenção Primária à Saúde , Adulto Jovem
18.
Soc Sci Med ; 244: 112648, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31707144

RESUMO

The prevalence of infants born before 37 weeks of gestation continues to rise in the United States. Advances in neonatology have led to improved survival rates among preterm infants, including those born at a very-low-birth-weight (VLBW). Exclusive human milk feeding is a therapeutic intervention for VLBW preterm infants, and mothers are encouraged to provide their own milk. Yet, it is well-established that mothers and infants may face extraordinarily complicated lactation and infant feeding challenges in NICU settings, many of which emanate from birth trauma. The purpose of this study is to gain a deeper understanding of the ways in which the hyper-medicalized management of preterm birth and infant feeding in NICU environments affect mothers' postpartum health and well-being. Seventeen mothers of VLBW preterm infants were interviewed August 2016-June 2017 within three years of their infant's NICU discharge about their feeding decisions and experiences. Narrative analysis yielded five themes: (1) the physical and emotional trauma of giving birth prematurely impacted mothers' lactation experiences; (2) separation from their infants intensified mothers' suffering and disrupted lactation; (3) mothers experienced being marginalized in their infant's NICU care; (4) mothers practiced embodied forms of resistance to cope with both trauma and marginalization; and (5) skilled support was central to mothers' positive lactation experiences in the NICU. We draw upon feminist theory in the anthropology of reproduction to examine the fundamental hierarchies of power in U.S. neonatal critical care systems that fracture mothers' interembodied relationships to their newborns, exacerbate lactation failure, and engender traumatic postpartum neglect. Moreover, we theorize mothers' expressions of suffering in the context of preterm birth and lactation insufficiency as idioms of distress engendered by the violence of neglectful care. Narrative inquiry is instrumental to designing structural transformations in the systems of care available to mothers of preterm infants who are admitted to a NICU.


Assuntos
Cuidado do Lactente/psicologia , Recém-Nascido de muito Baixo Peso , Unidades de Terapia Intensiva Neonatal , Lactação , Mães/psicologia , Período Pós-Parto , Adaptação Psicológica , Adulto , Aleitamento Materno/psicologia , Estudos Transversais , Feminino , Humanos , Recém-Nascido , Estudos Longitudinais , Medicalização , Relações Mãe-Filho/psicologia , Gravidez , Estados Unidos
19.
Midwifery ; 82: 102622, 2020 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-31951904

RESUMO

OBJECTIVE: To explore the decision making process of women who seek to give birth in water DESIGN: A qualitative design using semi-structured interviews with women who planned a waterbirth was used. Interviews were recorded, transcribed, and coded for emergent themes using a grounded theory approach for analyses SETTING: Twenty-three women (mean age = 33.5 years mean number of children = 2.5) who had planned a waterbirth were recruited from a prenatal care clinic in a mid-sized southeastern city in the United States. Questions explored how they decided to pursue a waterbirth, sources of information, support systems, resistance, and their birth experience FINDINGS: Although all participants used the tub during labor, five did not give birth in the water. Analyses revealed that a belief in their body's ability to give birth along with the desire for limited medical interventions were the primary reasons for choosing waterbirth. Previous positive and negative experiences with birth also shaped their decision. Women actively sought information about waterbirths from the internet and friends. One-third of participants decided to pursue a waterbirth later in pregnancy and changed OB practices in order to have access to a waterbirth. Midwives and doulas were viewed as critical supporters of their waterbirth decision. However, most participants experienced some form of resistance toward their decision from others including family, friends, coworkers, and strangers. The overwhelming majority were positive about their experience and indicated they felt empowered, even if they were unable to give birth in the water, and encouraged other women to consider waterbirth. Most indicated they wanted to have a waterbirth in the future.


Assuntos
Tomada de Decisões , Trabalho de Parto/psicologia , Parto Normal/psicologia , Adulto , Feminino , Humanos , Entrevistas como Assunto/métodos , Parto Normal/normas , North Carolina , Gravidez , Pesquisa Qualitativa , Inquéritos e Questionários
20.
AIDS Patient Care STDS ; 33(10): 440-448, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31524504

RESUMO

This study explores health care providers' perceptions of similarities and differences in the sexual and reproductive needs of adolescents with perinatally acquired HIV (PHIV) and behaviorally acquired HIV (BHIV). Interviews (n = 13) and online surveys (n = 46) were completed by medical and social service providers (n = 30, n = 29, respectively) who care for adolescents with HIV. Eligible providers were recruited using snowball sampling. Responses to open-ended questions were coded for emergent themes. Sixty-eight percent of participants perceived differences in the sexual and reproductive health needs of adolescents with PHIV and BHIV. Differences included factors related to psychosocial, sexual, and medical needs. Providers believed adolescents with PHIV had integrated their diagnosis into their identity, were more adept at communicating with providers, and were more sexually cautious than youth with BHIV. Providers perceived adolescents with BHIV as more comfortable discussing sex-related issues, and suggested youth with PHIV were more comfortable accessing health care. Adolescents with PHIV were thought to have complex medical histories/treatment and greater knowledge of illness/medications. Existing research on adolescent-reported sexual and reproductive health knowledge and experiences in care suggests that provider and adolescent perspectives do not always align. Mode of transmission may provide some information about psychosocial functioning and sexual behavior. However, assumptions about sexual and reproductive health needs based solely on mode of transmission may contribute to gaps in sexual and reproductive health care. Future research is needed to examine whether these differing perspectives indeed lead to discrepancies in the care provided to adolescents with HIV.


Assuntos
Comportamento do Adolescente/psicologia , Serviços de Saúde do Adolescente/organização & administração , Infecções por HIV/congênito , Infecções por HIV/psicologia , Pessoal de Saúde/psicologia , Necessidades e Demandas de Serviços de Saúde , Saúde Reprodutiva , Comportamento Sexual/psicologia , Saúde Sexual , Adolescente , Adulto , Feminino , Infecções por HIV/tratamento farmacológico , Comportamentos Relacionados com a Saúde , Acessibilidade aos Serviços de Saúde , Humanos , Transmissão Vertical de Doenças Infecciosas , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Percepção , Reprodução , Serviços de Saúde Reprodutiva/organização & administração , Serviços de Saúde Reprodutiva/estatística & dados numéricos
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