RESUMO
Trial tested effect of advance care planning on family/surrogates' understanding of patients' end-of-life treatment preferences longitudinally. A multisite, assessor-blinded, intent-to-treat, parallel-group, randomized controlled clinical trial in five hospital-based HIV clinics enrolled 449 participants aged 22 to 77 years during October 2013-March 2017. Patients living with HIV/family dyads were randomized at 2:1 ratio to 2 weekly ~ 60-min sessions either ACP (n = 155 dyads)-(1) ACP facilitated conversation, (2) Advance directive completion; or Control (n = 68 dyads)-(1) Developmental/relationship history, (2) Nutrition/exercise tips. ACP families/surrogates were more likely to accurately report patients' treatment preferences at Time 1 (T1) and 12 months post-intervention (T2) compared to controls, experiencing high congruence longitudinally (highâhigh transition), [63·6% vs 37·7% (difference = 25·9%, 95% CI: 11·3%, 40·4%, χ2 = 11·52, p = 0·01)], even as patients' preferences changed over time. ACP families/surrogates had eight times the odds of controls of having an excellent understanding of patients' treatment preferences (Adjusted Odds Ratio 7.91, 95%CI: 3.08, 20.3). Conversations matter.
Assuntos
Planejamento Antecipado de Cuidados , Infecções por HIV , Assistência Terminal , Adulto , Idoso , Tomada de Decisões , Família , Infecções por HIV/terapia , Humanos , Pessoa de Meia-Idade , Adulto JovemRESUMO
It is unknown if religiousness/spirituality influences end-of-life treatment preferences among adolescents. Investigators assessed whether religiousness/spirituality moderates the relationship between an advance care planning intervention and end-of-life treatment preferences among 85 primarily African-American adolescents living with HIV/AIDS in outpatient-hospital-based HIV-specialty clinics in the United States. Adolescents aged 14-21 years living with HIV/AIDS and their families were randomized to three-weekly-60-minute sessions either: advance care planning (survey, goals of care conversation, advance directive); or control (developmental history, safety tips, nutrition/exercise). At 3-months post-intervention the intervention effect (decreasing the likelihood of choosing to continue treatments in all situations) was significantly moderated by religiousness/spirituality. Highly religious/spiritual adolescents were four times more likely to choose to continue treatments in all situations. Thus, intensive treatments at end-of-life may represent health equity, rather than health disparity. The belief believed that HIV is a punishment from God at baseline (15%, 14/94) was not associated with end-of-life treatment preferences. Twelve percent (11/94) reported they had stopped taking HIV medications for more than 3 days because of the belief in a miracle. Religiousness moderates adolescent's medical decision-making. Adolescents who believe in miracles should receive chaplaincy referrals to help maintain medication adherence.
Assuntos
Infecções por HIV , Adolescente , Adulto , Planejamento Antecipado de Cuidados , Diretivas Antecipadas , Feminino , Infecções por HIV/tratamento farmacológico , Humanos , Masculino , Religião , Espiritualidade , Estados Unidos , Adulto JovemRESUMO
Clinicians fear pediatric advance care planning (pACP) for adolescents is too distressing for families. Multisite longitudinal randomized controlled trial of adolescents with HIV tested the effect of FAmily-CEntered (FACE®) pACP intervention on families' anxiety and depression. One hundred five adolescent/family dyads were randomized to FACE® (n = 54 dyads) or control (n = 51 dyads). Families were 90% African American, 37% HIV-positive, and 22% less than high school educated. Families reported lower anxiety 3 months post-FACE® intervention than control (ß = -4.71, 95% confidence interval [CI] = [-8.20, -1.23], p = .008). Male family members were less anxious than female family members (ß = -4.55, 95% CI = [-6.96, -2.138], p ≤ .001). Family members living with HIV reported greater depressive symptoms than HIV-uninfected families (ß = 3.32, 95% CI = [0.254, 6.38], p = .034). Clinicians can be assured this structured, facilitated FACE® pACP model minimized family anxiety without increasing depressive symptoms. Adolescent/family dyads should be invited to have access to, and provision of, evidence-based pACP as part of patient-centered/family-supported care in the HIV continuum of care.
Assuntos
Planejamento Antecipado de Cuidados/normas , Diretivas Antecipadas/psicologia , Transtornos de Ansiedade/enfermagem , Transtorno Depressivo/enfermagem , Enfermagem Familiar/normas , Família/psicologia , Infecções por HIV/psicologia , Pediatria/normas , Adolescente , Adulto , Negro ou Afro-Americano/psicologia , Tomada de Decisões , Feminino , Infecções por HIV/enfermagem , Humanos , Masculino , Guias de Prática Clínica como Assunto , Inquéritos e Questionários , População Branca/psicologiaRESUMO
The objective of this study is to determine if pediatric advance care planning (pACP) increases adolescent/family congruence in end-of-life (EOL) treatment preferences longitudinally. Adolescents aged 14-21 years with HIV/AIDS and their families were randomized (N = 105 dyads) to three-60-minute sessions scheduled one week apart: either the pACP intervention (survey administered independently, facilitated conversation with adolescent and family present, completion of legal advance directive document with adolescent and family present) or an active control (developmental history, safety tips, nutrition and exercise education). This longitudinal, single-blinded, multi-site, randomized controlled trial was conducted in six pediatric hospital-based HIV-clinics, located in high HIV mortality cities. The Statement of Treatment Preferences measured adolescent/family congruence in EOL treatment preferences at immediately following the facilitated pACP conversation (Session 2), and at 3-month post-intervention. The mean age of adolescent participants was 18 years (range 14-21 years); 54% were male; and 93% were African-American. One-third had an AIDS diagnosis. Immediately post-intervention the Prevalence Adjusted Bias Adjusted Kappa showed substantial treatment preference agreement for pACP dyads compared to controls (High burden/low chance of survival, PABAK = 0.688 vs. 0.335; Functional impairment, PABAK = 0.687 vs. PABAK= 0.34; Mental impairment, PABKA = 0.717 vs. 0.341). Agreement to limit treatments was greater among intervention dyads than controls (High burden: 14.6% vs. 0%; Functional impairment = 22.9% vs. 4.4%; and Mental impairment: 12.5% vs. 4.4%). Overall treatment preference agreement among pACP dyads was high immediately post-intervention, but decreased over time. In contrast, treatment agreement among control dyads was low and remained low over time. As goals of care change over time with real experiences, additional pACP conversations are needed.
Assuntos
Planejamento Antecipado de Cuidados , Diretivas Antecipadas/psicologia , Tomada de Decisões , Família/psicologia , Infecções por HIV/terapia , Síndrome da Imunodeficiência Adquirida , Adolescente , Criança , Comunicação , Feminino , Infecções por HIV/psicologia , Hospitais Pediátricos , Humanos , Masculino , Aceitação pelo Paciente de Cuidados de Saúde , Método Simples-Cego , Inquéritos e Questionários , Adulto JovemRESUMO
Congruence in spirituality between HIV+ adolescent (n = 40)/family (n = 40) dyads and psychological adjustment and quality of life were assessed, using the Spiritual Well-Being Scale of the Functional Assessment of Chronic Illness Therapy, Beck Depression Inventory-II, Beck Anxiety Inventory and Pediatric Quality of Life Inventory at baseline and 3-month post-intervention. Adolescents were 60 % female and 92 % African American. Congruence in spirituality between adolescent/surrogate dyads remained unchanged at 3 months. High congruence existed for "having a reason for living"; rejection of "life lacks meaning/purpose" and "HIV is a punishment from God." Adolescents were less likely to forgive the harm others caused them than their families.
Assuntos
Família/psicologia , Infecções por HIV/psicologia , Qualidade de Vida/psicologia , Religião e Medicina , Papel do Doente , Espiritualidade , Adaptação Psicológica , Adolescente , Transtornos de Ansiedade/diagnóstico , Transtornos de Ansiedade/psicologia , Transtornos de Ansiedade/terapia , Transtorno Depressivo/diagnóstico , Transtorno Depressivo/psicologia , Transtorno Depressivo/terapia , Feminino , Perdão , Infecções por HIV/congênito , Infecções por HIV/terapia , Humanos , Masculino , Motivação , Inventário de Personalidade/estatística & dados numéricos , Psicometria , PuniçãoRESUMO
The aims of the study were (1) to determine whether adolescents find it acceptable to have physicians explore their spiritual beliefs as part of their medical care, (2) to characterize the role of spirituality and religious beliefs in adolescents with and without HIV, and (3) to examine associations between spirituality/religion and quality of life. Adolescents receiving their medical care at an urban Adolescent Health Clinic completed a study-specific questionnaire about spiritual inquiry by their physician, the Brief Multidimensional Measurement of Religiousness/Spirituality, and the Pediatric Quality of Life Inventory 4.0. Chi-squared analysis, Fischer's exact test, and t tests were used to assess associations. A total of 45 participants enrolled: 19 HIV+ (53% vertical transmission) and 26 HIV-; mean age 17.2 years; 80% African American. Four out of 45 (9%) had ever been asked by their doctor about their spiritual/religious beliefs, and only 8 (18%) had ever shared these beliefs with their healthcare provider. Most teens wanted their provider to ask them about their spiritual beliefs during some visits, especially when dealing with death/dying or chronic illness (67%). Those with HIV were more likely to endorse wanting their doctors to pray with them (42% vs. 15%), feeling "God's presence" (Mean = 3.95 vs. 2.83), being "part of a larger force" (Mean = 2.58 vs. 1.69), and feeling "God had abandoned them" (Mean = 1.63 vs. 1.15). There are certain circumstances in which healthcare providers should include a spiritual history with teenage patients. Few differences emerged in the teens studied with and without HIV.
Assuntos
Comportamento do Adolescente/psicologia , Atitude Frente a Saúde , Infecções por HIV/psicologia , Relações Médico-Paciente , Religião e Psicologia , Adolescente , Negro ou Afro-Americano/psicologia , Estudos Transversais , Feminino , Humanos , Masculino , Qualidade de Vida/psicologia , Espiritualidade , Inquéritos e Questionários , População UrbanaRESUMO
PURPOSE: Gender-affirming hormones and/or surgeries seeking to change the body can have potentially lasting effects. Changes in requests for these therapies among gender-diverse youth are not well-understood. The study aim is to characterize factors associated with shifts in gender-related medical requests. METHODS: This mixed-methods study used retrospective chart review and qualitative interviews with clinicians. Of 130 youth receiving clinical gender care at Children's National Hospital, 68 met inclusion criteria. Qualitative interview analysis was performed to identify patterns and themes around shifts in gender-related medical requests over time. Statistical analysis employed chi-square and t-tests to compare characteristics in the shift versus no-shift groups and kappa statistics to calculate qualitative coding agreement. RESULTS: Of the 68 youth followed over time (mean age 15.11 years, 47% autistic, 22% nonbinary), 20 (29%) reported a shift in request. No significant differences were found by age, autism status, or designated sex at birth. More youth with shifts were nonbinary (p = .012). Six shift profiles were identified from qualitative interviews with excellent reliability (κ = 0.865). Four of the profiles reflect shifts in request prior to starting treatment (85% sample); two involved shifts after commencing treatment (15%). The most common profile reflected a medical request that was made, withdrawn, and re-requested (45%). DISCUSSION: Shifts in gender-affirming medical requests by gender-diverse youth may not be uncommon during the adolescent's gender discernment process, and may more likely occur among nonbinary youth. Many individuals who experience shifts away from medical treatment may later resume the request.
Assuntos
Pessoas Transgênero , Transexualidade , Criança , Recém-Nascido , Humanos , Adolescente , Estudos Retrospectivos , Reprodutibilidade dos Testes , Identidade de GêneroRESUMO
OBJECTIVE: We examined factors influencing end-of-life care preferences among persons living with HIV (PLWH). METHODS: 223 PLWH were enrolled from 5 hospital-based clinics in Washington, DC. They completed an end-of-life care survey at baseline of the FACE™-HIV Advance Care Planning clinical trial. FINDINGS: The average age of patients was 51 years. 56% were male, 66% heterosexual, and 86% African American. Two distinct groups of patients were identified with respect to end-of-life care preferences: (1) a Relational class (75%) who prioritized family and friends, comfort from church services, and comfort from persons at the end-of-life; and (2) a Transactional/Self-Determination class (25%) who prioritized honest answers from their doctors, and advance care plans over relationships. African Americans had 3x the odds of being in the Relational class versus the Transactional/Self-determination class, Odds ratio = 3.30 (95% CI, 1.09, 10.03), p = 0.035. Males were significantly less likely to be in the relational latent class, Odds ratio = 0.38 (CI, 0.15, 0.98), p = 0.045. Compared to non-African-Americans, African-American PLWH rated the following as important: only taking pain medicines when pain is severe, p = 0.0113; saving larger doses for worse pain, p = 0.0067; and dying in the hospital, p = 0.0285. PLWH who were sexual minorities were more afraid of dying alone, p = 0.0397, and less likely to only take pain medicines when pain is severe, p = 0.0091. CONCLUSION: Integrating culturally-sensitive palliative care services as a component of the HIV care continuum may improve health equity and person-centered care.
Assuntos
Infecções por HIV , Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Adulto , Feminino , Objetivos , Infecções por HIV/tratamento farmacológico , Humanos , Masculino , Pessoa de Meia-Idade , Comportamento SexualRESUMO
CONTEXT: The effect of advance care planning (ACP) interventions on the trajectory of end-of-life treatment preference congruence between patients and surrogate decision-makers is unstudied. OBJECTIVE: To identify unobserved distinctive patterns of congruence trajectories and examine how the typology of outcome development differed between ACP and controls. METHODS: Multisite, assessor-blinded, intent-to-treat, randomized clinical trial enrolled participants between October 2013 to March 2017 from 5 hospital-based HIV clinics. Persons living with HIV(PLWH)/surrogate dyads were randomized to 2 weekly 60-minute sessions: ACP (1) ACP facilitated conversation, (2) advance directive completion; or Control (1) Developmental/relationship history, (2) Nutrition/Exercise. Growth Mixed Modeling was used for 18-month post-intervention analysis. FINDINGS: 223 dyads (N = 449 participants) were enrolled. PLWH were 56% male, aged 22 to 77 years, and 86% African American. Surrogates were 56% female, aged 18 to 82 years, and 84% African American. Two latent classes (High vs. Low) of congruence growth trajectory were identified. ACP influenced the trajectory of outcome growth (congruence in all 5 AIDS related situations) by latent class. ACP dyads had a significantly higher probability of being in the High Congruence latent class compared to controls (52%, 75/144 dyads versus 27%, 17/62 dyads, p = 0.001). The probabilities of perfect congruence diminished at 3-months post-intervention but was then sustained. ACP had a significant effect (ß = 1.92, p = 0.006, OR = 7.10, 95%C.I.: 1.729, 26.897) on the odds of being in the High Congruence class. CONCLUSION: ACP had a significant effect on the trajectory of congruence growth over time. ACP dyads had 7 times the odds of congruence, compared to controls. Three-months post-intervention is optimal for booster sessions.
Assuntos
Planejamento Antecipado de Cuidados , Assistência Terminal , Diretivas Antecipadas , Morte , Tomada de Decisões , Feminino , Humanos , MasculinoRESUMO
BACKGROUND: The US National HIV/AIDS Strategy 2020 calls for increasing access to care, improving outcomes of people living with HIV, and targeting biomedical prevention efforts, including access to pre-exposure prophylaxis (PrEP) in communities where HIV is most heavily concentrated. The cities of Baltimore, Maryland (MD); Washington, DC; and Philadelphia, Pennsylvania (PA) are disproportionately burdened by high rates of new cases of HIV infection, with high prevalence among young Black and Latinx men who have sex with men (YBLMSM) and young Black and Latinx transgender women (YBLTW) aged 15-24 years. OBJECTIVE: This study aims (1) to identify and recruit YBLMSM and YBLTW who are at risk or living with HIV in Baltimore, MD; Philadelphia, PA; and Washington, DC, using respondent-driven sampling (RDS) with targeted seed selection, and (2) to assess the efficacy of a coach-based mobile-enhanced intervention (MEI) compared with standard of care (SOC) to increase successful engagement and retention into HIV, PrEP, and substance use treatment care across the HIV care and prevention continua in 3 Mid-Atlantic cities. This paper describes the protocol and progress as of October 20, 2019. METHODS: This study uses a multiphase mixed methods design. The first phase is a formative, qualitative research with focus group discussions and key informant interviews. The second phase consists of evaluating the ability of RDS with targeted seed selection. The third phase includes 2 embedded randomized controlled trials (RCTs), where participants complete a baseline sociobehavioral survey, rapid HIV testing, and eligible youth enroll in parallel status-dependent RCTs that randomize the participant to 1 of 2 study arms: MEI with coach or SOC. Participants are asked to complete a web-based survey and provide biologic specimens-HIV-1 RNA (viral load) or HIV-1 antibody test and urine drug screen-at baseline and at 3, 6, and 12 months, and an exit interview at 18 months. RESULTS: A formative qualitative research was conducted in February 2017 and May 2018, and this led to further refinement of recruitment and study methods. Aim 1 recruitment began in September 2017 with subsequent enrollment into the RCTs. Recruitment is ongoing with 520 participants screened and 402 (77.3%) enrolled in aim 1 by October 2020. Of these, 159 are enrolled in the 2 randomized trials: 36 (22.6%) HIV-positive not virally suppressed (aim 2) and 123 (77.4%) high-risk HIV-negative (aim 3). CONCLUSIONS: This study has the potential to significantly impact the medical and substance use services provided to YBLMSM and YBLTW in the United States by providing rigorous scientific evidence outlining approaches and strategies that improve the uptake and engagement of YBLMSM and YBLTW in the HIV treatment and prevention continuum. TRIAL REGISTRATION: ClinicalTrials.gov NCT03194477; https://clinicaltrials.gov/ct2/show/NCT03194477. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/17269.
RESUMO
CONTEXT: No prospective studies address disease-specific advance care planning (ACP) for adults living with HIV/AIDS. OBJECTIVE: To examine the efficacy of FAmily-CEntered (FACE) ACP in increasing ACP and advance directive documentation in the medical record. METHODS: Longitudinal, two-arm, randomized controlled trial with intent-to-treat design recruited from five hospital-based outpatient HIV clinics in Washington, DC. Adults living with HIV and their surrogate decision-makers (N = 233 dyads) were randomized to either an intensive facilitated two-session FACE ACP (Next Steps: Respecting Choices goals of care conversation and Five Wishes advance directive) or healthy living control (conversations about developmental/relationship history and nutrition). RESULTS: Patients (n = 223) mean age: 51 years, 56% male, 86% African-American. One hundred ninety-nine dyads participated in the intervention. At baseline, only 13% of patients had an advance directive. Three months after intervention, this increased to 59% for the FACE ACP group versus 17% in the control group (P < 0.0001). Controlling for race, the odds of having an advance directive in the medical record in the FACE ACP group was approximately seven times greater than controls (adjusted odds ratio = 6.58, 95% CI: 3.21-13.51, P < 0.0001). Among African-Americans randomized to FACE, 58% had completed/documented advance directives versus 20% of controls (P < 0.0001). CONCLUSIONS: The FACE ACP intervention significantly improved ACP completion and advance directive documentation in the medical record among both African-American and non-African-American adults living with HIV in Washington, DC, providing health equity in ACP, which can inform best practices.
Assuntos
Planejamento Antecipado de Cuidados , Documentação , Infecções por HIV , Equidade em Saúde , Adolescente , Adulto , Diretivas Antecipadas , Negro ou Afro-Americano , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Adulto JovemRESUMO
Despite clear evidence that motor-vehicle crashes are the leading cause of mortality and severe morbidity among adolescents and young adults, healthcare providers have not been fully engaged in efforts to reduce these rates. A new national awareness and effort to reduce motor-vehicle crashes provides an opportunity to engage healthcare providers and encourage them to play an active role in curbing crash rates. Indeed, research supports the notion that, when provided with adequate knowledge, training, and charting tools or electronic prompts, healthcare providers can increase their rates of screening, educating, and counseling youth and their parents about safe driving and that these efforts can be effective at increasing safety and reducing risk. Healthcare providers' efforts to advocate for safer driving laws and regulations are also important efforts in reducing youth driving risk.
Assuntos
Acidentes de Trânsito/prevenção & controle , Comportamento do Adolescente , Condução de Veículo , Papel do Médico , Acidentes de Trânsito/mortalidade , Adolescente , Serviços de Saúde do Adolescente/organização & administração , Humanos , Serviços Preventivos de Saúde/organização & administraçãoRESUMO
OBJECTIVES: To determine the effect of family-centered pediatric advance care planning (FACE pACP) on HIV-specific symptoms. METHODS: In this single-blinded, randomized controlled trial conducted at 6 US hospital-based HIV clinics, 105 adolescent-family dyads, randomly assigned from July 2011 to June 2014, received 3 weekly sessions in either the FACE pACP arm ([1] pediatric advance care planning survey, [2] Respecting Choices interview, and [3] 5 Wishes directive) or the control arm ([1] developmental history, [2] safety tips, and [3] nutrition and exercise tips). The General Health Assessment for Children measured patient-reported HIV-specific symptoms. Latent class analyses clustered individual patients based on symptom patterns. Path analysis examined the mediating role of dyadic treatment congruence with respect to the intervention effect on symptom patterns. RESULTS: Patients were a mean age of 17.8 years old, 54% male, and 93% African American. Latent class analysis identified 2 latent HIV-symptom classes at 12 months: higher symptoms and suffering (27%) and lower symptoms and suffering (73%). FACE pACP had a positive effect on dyadic treatment congruence (ß = .65; 95% CI: 0.04 to 1.28), and higher treatment congruence had a negative effect on symptoms and suffering (ß = -1.14; 95% CI: -2.55 to -0.24). Therefore, FACE pACP decreased the likelihood of symptoms and suffering through better dyadic treatment congruence (ß = -.69; 95% CI: -2.14 to -0.006). Higher religiousness (ß = 2.19; 95% CI: 0.22 to 4.70) predicted symptoms and suffering. CONCLUSIONS: FACE pACP increased and maintained agreement about goals of care longitudinally, which lowered adolescents' physical symptoms and suffering, suggesting that early pACP is worthwhile.
Assuntos
Planejamento Antecipado de Cuidados , Família/psicologia , Infecções por HIV/terapia , Adolescente , Feminino , Infecções por HIV/psicologia , Humanos , Análise de Classes Latentes , Estudos Longitudinais , Masculino , Método Simples-Cego , Estados Unidos , Adulto JovemRESUMO
This research explores the perceptions of adolescents and young adults (AYA) living with perinatally acquired HIV (PHIV) as they transition into parenthood. We conducted hour-long, semistructured audio-recorded interviews with a purposive sample of 17 AYA parents with PHIV who were current or former patients at two US pediatric/adolescent infectious diseases clinics. Participants were asked about challenges/rewards of parenting and anticipated future fertility desires/intentions. Analysis of the transcribed interviews was guided by grounded theory. Mean age of participants was 22 years. The majority were African American (n = 8) or Hispanic (n = 6) and female (n = 14). Two participants were pregnant and others had a range of 1-3 children (mean = 1.4), one of whom was HIV positive. Analyses revealed that time with their child was a valuable commodity. Participants expressed concerns about not "being there" for their child due to sickness and worries that their child may experience HIV-related discrimination once a parent's HIV status was disclosed. The importance of being a role model and present in their child's life over time was emphasized and served as motivation to pursue education and employment opportunities. Those parents who intended to have another child were motivated by a strong desire to create a legacy and a family of their own as a way to deal with HIV-related losses and stigma. Participants reported the importance of emotional support offered by providers, as well as concrete social services available in that care setting even if they had transitioned to adult care. AYA also expressed parenting rewards/challenges similar to those of their uninfected peers. As youth with PHIV continue to mature, increasing numbers will become parents. It is incumbent upon both pediatric and adult providers to support newly formed families living in the context of intergenerational HIV infection.
Assuntos
Adaptação Psicológica , Infecções por HIV/psicologia , Transmissão Vertical de Doenças Infecciosas , Intenção , Pais/psicologia , Estigma Social , Adolescente , Negro ou Afro-Americano , Aconselhamento , Feminino , Hispânico ou Latino , Humanos , Entrevistas como Assunto , Masculino , Poder Familiar/psicologia , Pesquisa Qualitativa , Qualidade de Vida , Adulto JovemRESUMO
PURPOSE: There is a lack of current information concerning the knowledge and attitudes of urban adolescents regarding menstruation. The purpose of this research was to determine: (1) The prevalence of dysmenorrhea, premenstrual symptoms and other menstrual disorders among adolescents who receive their health care at an urban adolescent health center; (2) The attitudes and expectations adolescents have relating to their menstrual period; and (3) The relationship between teens' attitudes and expectations regarding menses and actual menstrual-related morbidities such as school absenteeism. METHODS: A 35-item, survey was administered to postmenarcheal adolescents ages 12-21 years. Descriptive analysis of the prevalence of the menstrual disorders was completed. Chi-square testing was used to compare the prevalence of menstrual-related morbidities with the level of adolescents' expectations regarding menstruation. RESULTS: 91.5% of the respondents were African-American. Premenstrual syndrome (PMS) was the most prevalent reported menstrual disorder (84.3%) followed by dysmenorrhea (65%), abnormal cycle lengths (13.2%), and excessive uterine bleeding (8.6%). Only 2% of teens report receiving information about menstruation from their health care provider. Negative expectations regarding menstruation were associated with higher rates of school absenteeism and missed activities (P = 0.0790 and P = 0.0297 respectively). CONCLUSIONS: PMS and dysmenorrhea are prevalent medical disorders among urban adolescents. Morbidities, including school absenteeism, are higher among those with negative period expectations. Since only 2% of teens received information regarding menstruation from their health care provider, it is imperative that health care providers increase their anticipatory guidance regarding normal menstruation. This may aid in the prompt diagnosis and treatment of menstrual disorders, and decrease their associated morbidities.
Assuntos
Serviços de Saúde do Adolescente/normas , Conhecimentos, Atitudes e Prática em Saúde , Ciclo Menstrual/psicologia , Distúrbios Menstruais/epidemiologia , Distúrbios Menstruais/psicologia , Absenteísmo , Adolescente , Serviços de Saúde do Adolescente/estatística & dados numéricos , Adulto , Negro ou Afro-Americano/psicologia , Amenorreia/complicações , Amenorreia/epidemiologia , Amenorreia/psicologia , Distribuição de Qui-Quadrado , Criança , Estudos Transversais , Dismenorreia/complicações , Dismenorreia/epidemiologia , Dismenorreia/psicologia , Feminino , Inquéritos Epidemiológicos , Humanos , Distúrbios Menstruais/complicações , Síndrome Pré-Menstrual/complicações , Síndrome Pré-Menstrual/epidemiologia , Síndrome Pré-Menstrual/psicologia , Psicologia do Adolescente , Inquéritos e Questionários , Saúde da População Urbana , Saúde da MulherRESUMO
Many adolescents are at high risk for HIV infection, and those who are infected or at-risk commonly present to the ED, often as their only or frequent source of care. It is important to consider routine screening and to have a high index of suspicion for AHI in this setting. If a diagnosis of HIV infection is made, immediate linkage to care with a specialist in adolescent and young adult HIV infection should be prioritized. For the known HIV-infected patient, management must consider unique possibilities of OIs, IRIS, and medication side effects. For any patient on ART, drug-drug interactions must be noted as part of any treatment plan. If a young person presents with a recent sexual or needlestick exposure of concern, every effort to prescribe and ensure follow-up for PEP should be made. It is essential for physicians to understand and comply with local regulations regarding HIV testing and adolescents' rights for associated confidential care. Finally, physicians who see adolescents in acute care settings have a tremendous opportunity to make a difference in ensuring improved health outcomes for youth living with HIV and to prevent new infections.
Assuntos
Infecções Oportunistas Relacionadas com a AIDS/diagnóstico , Terapia Antirretroviral de Alta Atividade/efeitos adversos , Doenças da Medula Óssea/induzido quimicamente , Infecções por HIV/diagnóstico , Profilaxia Pós-Exposição/métodos , Encaminhamento e Consulta , Infecções Oportunistas Relacionadas com a AIDS/tratamento farmacológico , Infecções Oportunistas Relacionadas com a AIDS/prevenção & controle , Adolescente , Doenças da Medula Óssea/etiologia , Confidencialidade , Emergências , Serviço Hospitalar de Emergência , Infecções por HIV/complicações , Infecções por HIV/tratamento farmacológico , Infecções por HIV/prevenção & controle , Humanos , Consentimento Informado por Menores , Programas de RastreamentoRESUMO
This paper describes the development of a novel, pilot program in which a combined family group and peer approach were used to increase adherence to antiretroviral therapy in HIV-infected youths. Twenty-three HIV-positive youths, 15-22 years of age and 23 family members or "treatment buddies" participated in one of three 12-week programs. The intervention had six biweekly family and youth education sessions and six biweekly youth-only education sessions. Devices to increase adherence to antiretroviral therapy such as pill boxes, calendars, and watch alarms were introduced at youth-only sessions. Eighteen of the 23 youths completed a group. Ninety-one percent of youths self-reported increased adherence to medications after completion of a group. Four participants experienced a one-log reduction in viral loads to undetectable levels during the intervention. Two participants continued to decline antiretroviral medications at the end of the intervention and demonstrated no decrease in viral load. Participants tested five devices and rated the multiple alarm watch as the best aid for improving adherence to medication. Family/treatment buddies rated the overall program as highly helpful, citing social support as most valuable. An unanticipated benefit was an increase in other health behaviors, including medical and dental appointments, hepatitis B and influenza immunizations, and referrals to mental health and substance abuse treatment.
Assuntos
Comportamento do Adolescente , Terapia Antirretroviral de Alta Atividade , Família , Infecções por HIV/tratamento farmacológico , Comportamentos Relacionados com a Saúde , Cooperação do Paciente , Educação de Pacientes como Assunto/métodos , Adolescente , Adulto , Atitude Frente a Saúde , Feminino , Grupos Focais , Infecções por HIV/classificação , Infecções por HIV/psicologia , Humanos , Masculino , Projetos Piloto , Psicoterapia de Grupo , Índice de Gravidade de Doença , Carga ViralRESUMO
PURPOSE: Adolescents frequently rely on emergency medical care, rather than using primary care providers (PCPs). Our objectives were to characterize a population of adolescents presenting to a large, urban emergency department (ED) and to examine the reasons why they present to the ED, rather than to their PCP's office. METHODS: Adolescents ages 12 to 21 years and their parents/guardians were invited to participate and asked to complete a brief online survey. Demographic data and triage information were collected from electronic medical records. RESULTS: Of 203 participants, 66% (n = 134) had public insurance, and 40% (n = 82) were triaged as nonurgent. Nearly all (93%, n = 189) reported having a PCP or primary clinic. The most common reasons given for presenting to the ED were participant perception of illness requiring immediate care (34%), followed by PCP referral to the ED (21%). Those with public insurance (odds ratio = 4.44; 95% CI 2.01 to 9.81) or no insurance/unknown insurance status (odds ratio = 4.77; 95% CI 1.34 to 17.01) were more likely to be triaged as nonurgent than those with private insurance. CONCLUSIONS: Many adolescents in this study were triaged as nonurgent, with several participants perceiving they were acutely ill requiring immediate physician care. Further analyses revealed that private insurance was significantly associated with urgent triage status. Future studies could educate adolescents and families about appropriate use of the ED or examine PCP offices directly to determine practices for phone triage and ED referrals of adolescents.
Assuntos
Serviço Hospitalar de Emergência/estatística & dados numéricos , Atenção Primária à Saúde/estatística & dados numéricos , Adolescente , Criança , District of Columbia , Emergências , Feminino , Hospitais Urbanos , Humanos , Cobertura do Seguro , Masculino , Pais , Médicos de Atenção Primária , Encaminhamento e Consulta , Adulto JovemRESUMO
Young people living with HIV/AIDS (YPLH) in the post-HAART era have the potential to manage their HIV as a chronic illness rather than as an almost inevitable terminal disease. However, little is known about behaviors YPLH can engage in to promote or protect health beyond taking anti-retroviral (ARV) medicines. The current study fills an important gap in existing research by identifying correlates of Health Protective Behaviors (HPB) within an urban sample of YPLH. Participants (n=134) were recruited from two pediatric clinics serving adolescents living with HIV who met the following criteria: HIV-infected and aware of their status, 13-24 years old, residing in the Washington, DC metropolitan area, currently prescribed ARV or due to begin ARV within 3 months, and able to understand and sign a written consent form. Each participant was interviewed via Audio computer-assisted self-interview (ACASI) and reported the percentage of possible time they engaged in six HPB during the prior month using a 10-point scale (e.g., 5=50%). Results indicate that most patients engaged in the measured health protective behaviors more than half the time, although patients 18 and older engaged in all HPB less frequently than their younger counterparts. Patients with adherence > 90% were far more likely to engage in HPB than those with poorer adherence. The age differences in HPB highlight a need for broader scaffolding in the transition to independent living and adult health care. Given the relationship between adherence and HPB, the establishment and maintenance of healthy lifestyle practices early in adolescence can translate into positive long-term health outcomes.
RESUMO
CONTEXT: For youths with life-limiting conditions, little is known regarding families' understanding of their adolescent's wishes for end-of-life (EOL) care. OBJECTIVES: To examine congruence in HIV positive adolescents and their families' thoughts about death and dying. METHODS: The Lyon Advance Care Planning Survey-Adolescent and Surrogate versions were administered within a randomized controlled trial. Participants (n=48) were medically stable adolescents aged 14-21 years with HIV/AIDS and their families. Congruence was measured by intraclass correlation coefficients (ICCs) for continuous variables and by kappa for ordinal or dichotomous responses. RESULTS: Adolescent participants were as follows: mean age 16.6 years (range 14-21); 37.5% males; 92% African American; 38% CD4 count <200; and viral load mean=32,079 copies/mL (range <400-91,863 copies/mL). Adolescent/family dyads agreed that it is important to complete an advance directive to let loved ones know their wishes (21/24 dyads), yet no dyads agreed an advance directive had been completed. Dyads endorsed incongruent thoughts about the adolescent being afraid of dying in pain (64%; congruent afraid=8 dyads, kappa=-0.0769) and being off life support machines (congruent important=9 dyads, ICC=-0.133, 95% confidence interval = -0.540, 0.302, P=0.721). Families' knowledge of teens' preferences for the timing of EOL conversations (early vs. late in course of illness) was poor (kappa=-0.1186). Adolescents (90%) wanted to talk about EOL issues before they entered the dying phase. CONCLUSION: Although important areas of congruence emerged, equally important areas, such as the timing of these conversations and adolescents' EOL needs and wishes, are not known by their families. Families need help initiating conversations to assure that their adolescents' EOL wishes are known to them.