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OBJECTIVE: For youth with anorexia nervosa (AN), remission requires high caloric goals to achieve weight restoration, consumption of a wide variety of calorically dense foods, and reintroduction of eliminated foods. Family-based treatment (FBT), the gold-standard treatment for youth with AN, empowers parents to renourish their child and restore them to health; yet, parents often report struggling with shifting meal planning and grocery shopping behaviors to focus on nutritional rehabilitation and weight restoration. METHODS: This proof-of-concept study aimed to modify a simulated grocery store (Open Science Online Grocery [OSOG]) for parents of youth with AN and explore the acceptability and feasibility of its use as part of standard care. Study staff collaborated with six parent research partners to modify the OSOG prior to piloting it with participants. Participants were 10 parents of youth undergoing a first-time hospitalization for medical stabilization of AN or atypical AN. Parents completed a battery of measures and a semistructured interview assessing the acceptability and feasibility of OSOG. RESULTS: Parents described the tool as credible and acceptable. Qualitative feedback highlighted common themes of caregiver burden, nutrition education, and acceptability of the tool. DISCUSSION: Results point to the need for more work in supporting parents in Phase I of FBT. PUBLIC SIGNIFICANCE: Families are instrumental in supporting youth to recover from anorexia nervosa. During treatment, parents are charged with selecting and serving their adolescent's meals, often requiring them to change grocery shopping and food preparation habits to meet their child's high caloric needs. Parents reported feeling overwhelmed by this task and noted struggling with learning different approaches to nourish their adolescent during an already stressful time. Collaboratively with parents, we modified a tool to support parents in shifting thier shopping habits, which they reported as being a helpful springboard in the early phase of treatment.
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Anorexia Nervosa , Criança , Humanos , Adolescente , Anorexia Nervosa/terapia , Terapia Familiar/métodos , Pais , Hospitalização , RefeiçõesRESUMO
BACKGROUND: Pregnancy and early parenthood can be challenging transitional times for many families, especially those struggling with opioid use disorder (OUD). Over 8 million children live with a parent with SUD and parental drug use has been attributed to rising rates of family instability and child welfare involvement (Lipari & Van Horn, 2017; AFCARS, 2020;). Community-based prevention programming for families with young children, such as evidence-based maternal and child home visiting (EBHV), may we well positioned to engage and support families impacted by the opioid epidemic through early childhood. This paper presents case studies to highlight promising practices for adapting EBHV models to families impacted by SUD from the perspectives of staff and administrators. METHODS: Data from three pilot sites are presented as case studies. These sites were selected to represent the most innovative and developed adaptations to EBHV for families impacted by substance use from an implementation evaluation of state-funded pilot sites (N = 20) at existing home visiting agencies across Pennsylvania. Data reported here represent semi-structured interviews with 11 individuals. Data were coded to facilitators and barriers nodes to understand the process and impact of pilot implementation. RESULTS: Systems-level collaboration and coordination were key to serving a population already engaged in multiple systems. Engagement of substance use experts allowed home visitors to focus on delivery of evidence-based curricula supporting family stability and child development. External partnerships reduced stigma among home visitors. Across sites, staff struggled with the increased acuity of social complexity of the OUD population. CONCLUSIONS FOR PRACTICE: Pregnancy and early parenthood are challenging transitional times for many families, especially those with OUD. Evaluation results demonstrate the promise of systems-based adaptations to community-based prevention programming for families with young children, such as maternal and child home visiting, to better support families impacted by SUD.
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Transtornos Relacionados ao Uso de Opioides , Pais , Criança , Gravidez , Feminino , Humanos , Pré-Escolar , Pennsylvania , Família , Cuidado Pós-Natal , Visita Domiciliar , Transtornos Relacionados ao Uso de Opioides/prevenção & controleRESUMO
OBJECTIVE: The primary objective was to estimate the initiation and adherence rates of 17 α-hydroxyprogesterone caproate (17OHPC) among eligible mothers in a statewide population-based cohort of Medicaid enrollees. The secondary objectives were to (1) determine the association of maternal sociodemographic and clinical characteristics with 17OHPC utilization and (2) assess the real-world effectiveness of 17OHPC on recurrent preterm birth prevention and admission to neonatal intensive care unit (NICU). STUDY DESIGN: This is a retrospective cohort study using a linked, longitudinal administrative dataset of birth certificates and medical assistance claims. Medicaid-enrolled mothers in Pennsylvania were included in this study if they had at least one singleton live birth from 2014 to 2016 following at least one spontaneous preterm birth. Maternal Medicaid claims were used to ascertain the use of 17OHPC from various manufacturers, including compounded formulations. Propensity score matching was used to create a covariate balance between 17OHPC treatment and comparison groups. RESULTS: We identified 4,781 Medicaid-covered 17OHPC-eligible pregnancies from 2014 to 2016 in Pennsylvania, 3.4% of all Medicaid-covered singleton live births. The population-based initiation rate was 28.5% among eligible pregnancies. Among initiators, 50% received ≥16 doses as recommended, while 10% received a single dose only. The severity of previous spontaneous preterm birth was the strongest predictor for the initiation and adherence of 17OHPC. In the matched treatment (n = 1,210) and comparison groups (n = 1,210), we found no evidence of 17OHPC effectiveness. The risks of recurrent preterm birth (relative risk [RR] 1.10, 95% confidence interval [CI] 0.97-1.24) and births admitted to NICU (RR 1.00, 95% CI 0.84-1.18) were similar in treated and comparison mothers. CONCLUSION: The 17OHPC-eligible population represented 3.4% of singleton live births. Less than one-third of eligible mothers initiated treatment. Among initiators, 50% were treatment adherent. We found no difference in the risk of recurrent preterm birth or admission to NICU between treatment and comparison groups. KEY POINTS: · About 3.4% of singleton live births were eligible for 17OHPC.. · About 30% of eligible mothers initiated treatment.. · We found no association of 17OHPC with recurrent preterm birth..
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Nascimento Prematuro , Gravidez , Feminino , Recém-Nascido , Humanos , Caproato de 17 alfa-Hidroxiprogesterona/uso terapêutico , Nascimento Prematuro/epidemiologia , Nascimento Prematuro/prevenção & controle , Hidroxiprogesteronas/uso terapêutico , Medicaid , Estudos RetrospectivosRESUMO
OBJECTIVE: To understand how maternal and child home-visiting programs are adapted, enhanced, and expanded to meet the unique needs of rural communities. DESIGN: We explored factors shaping the role of home visiting with data from a 2013-2015 statewide evaluation of Maternal, Infant, and Early Childhood Home Visiting-funded programs. Features unique to a rural experiences were mapped onto the Community Capitals Framework. SETTING: Individual, semistructured interviews were conducted at 11 of 38 home-visiting sites across Pennsylvania. PARTICIPANTS: Program administrators, home visitors, and clients. MAIN OUTCOME MEASURE: Program adaptation. RESULTS: Our analysis represents 150 interviews with 11 program sites serving 14 counties. We document how rural home-visiting programs address community-wide limitations to maternal and child health by adapting program content to better meet the needs of families in rural areas. Data demonstrate how rural home-visiting program's provision of economic and social services reach beyond maternal child health care, building the capacity of individual families and the broader community. CONCLUSIONS: Home-visiting programs should be viewed as a vehicle for improving community well-being beyond health outcomes. These programs have become an integral part of our public health framework and should be leveraged as such.
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Serviços de Saúde Materna , População Rural , Pré-Escolar , Feminino , Visita Domiciliar , Humanos , Lactente , Cuidado Pós-Natal , Gravidez , Avaliação de Programas e Projetos de SaúdeRESUMO
OBJECTIVES: To finalise and validate a disease-specific patient-reported outcome (PRO) measure: the ANCA-associated vasculitis patient-reported outcome (AAV-PRO) questionnaire. Using a 35-item candidate questionnaire developed following 50 qualitative interviews in the UK, USA and Canada, a longitudinal survey was conducted to determine the final scale structure and validate the AAV-PRO. METHODS: Participants were recruited via Vasculitis UK and the Vasculitis Patient-Powered Research Network. The 35-item candidate questionnaire was completed at baseline and 3 months; UK participants completed the EuroQol-5D-5L (EQ-5D-5L), while US participants completed a test-retest exercise, 3-5 days after baseline. Scale structure was defined using exploratory factor analysis (EFA) and Rasch analysis. Convergent and known groups validity, test-retest reliability and longitudinal construct validity were assessed. RESULTS: There were 626 participants with AAV; >25% reporting 'active disease'. EFA and Rasch analysis supported a 29-item profile measure comprising six domains: 'organ-specific symptoms', 'systemic symptoms', 'treatment side effects', 'social and emotional impact', 'concerns about the future' and 'physical function'. Mean domain scores were higher for participants with 'active disease' versus 'remission' (p<0.001). Construct validity was demonstrated by correlations between domain scores and the EQ-5D-5L (range r=-0.55 to 0.78), all p<0.0001. In participants reporting 'no change' (n=97) during the test-retest, intraclass correlation coefficient values were high (range 0.89-0.96) for each domain. CONCLUSIONS: The AAV-PRO, a new disease-specific PRO measure for AAV, has good face and construct validity, is reliable, feasible and discriminates among disease states.
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Vasculite Associada a Anticorpo Anticitoplasma de Neutrófilos/terapia , Medidas de Resultados Relatados pelo Paciente , Adulto , Idoso , Vasculite Associada a Anticorpo Anticitoplasma de Neutrófilos/psicologia , Canadá , Estudos de Viabilidade , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Indução de Remissão , Reprodutibilidade dos Testes , Fatores Socioeconômicos , Inquéritos e Questionários , Reino Unido , Estados Unidos , Adulto JovemRESUMO
BACKGROUND: Poor understanding of diabetes management targets is associated with worse disease outcomes. Patients may use different information than providers to assess their diabetes control. In this study, we identify the information patients use to gauge their current level of diabetes control and explore patient-perceived barriers to understanding the hemoglobin A1c value (HbA1c). METHODS: Adults who self-reported a diagnosis of diabetes were recruited from outpatient, academically-affiliated, Internal Medicine clinics. Semi-structured interviews were conducted with participants and collected data were analyzed using thematic analysis. RESULTS: The mean age of the 25 participants was 56.8 years. HbA1c was one of several types of information participants used to assess diabetes control. Other information included perceived self-efficacy and adherence to self-care, the type and amount of medications taken, the presence or absence of symptoms attributed to diabetes, and feedback from self-monitoring of blood glucose. Most participants reported familiarity with the HbA1c (22 of 25), though understanding of the value's meaning varied significantly. Inadequate diabetes education and challenges with patient-provider communication were cited as common barriers to understanding the HbA1c. CONCLUSIONS: In addition to the HbA1c, several categories of information influenced participants' assessments of their diabetes control. Increased provider awareness of the factors that influence patients' perceptions of diabetes control can inform effective, patient-centered approaches for communicating vital diabetes-related information, facilitating behavior change towards improved patient outcomes.
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Glicemia/metabolismo , Diabetes Mellitus Tipo 2/terapia , Conhecimentos, Atitudes e Prática em Saúde , Participação do Paciente/métodos , Autocuidado/métodos , Autorrelato , Adulto , Idoso , Diabetes Mellitus Tipo 2/sangue , Diabetes Mellitus Tipo 2/diagnóstico , Feminino , Hemoglobinas Glicadas/metabolismo , Estilo de Vida Saudável/fisiologia , Humanos , Masculino , Adesão à Medicação , Pessoa de Meia-IdadeRESUMO
Granulomatosis with polyangiitis (GPA), microscopic polyangiitis (MPA), and eosinophilic granulomatosis with polyangiitis (EGPA) are multisystem diseases of small blood vessels, collectively known as the anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitides (AAV). This study explores the patient's perspective on the use of glucocorticoids, which are still a mainstay of treatment in AAV. Patients with AAV from the UK, USA, and Canada were interviewed, using purposive sampling to include a range of disease manifestations and demographics. The project steering committee, including patient partners, designed the interview prompts and cues about AAV, its treatment, and impact on health-related quality of life. Interviews were transcribed and analysed to establish themes grounded in the data. A treatment-related code was used to focus analysis of salient themes related to glucocorticoid therapy. Fifty interviews were conducted. Individual themes related to therapy with glucocorticoids emerged from the data and were analysed. Three overarching themes emerged: (1) Glucocorticoids are effective at the time of diagnosis and during relapse, and withdrawal can potentiate a flare, (2) glucocorticoids are associated with salient emotional, physical, and social effects (depression, anxiety, irritation, weight gain and change in appearance, diabetes mellitus, effect on family and work); and (3) patient perceptions of balancing the risks and benefits of glucocorticoids. Patients identified the positive aspects of treatment with glucocorticoids; they are fast-acting and effective, but, they voiced concerns about adverse effects and the uncertainty of the dose-reduction process. These results may be informative in the development of novel glucocorticoid-sparing regimens.
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Vasculite Associada a Anticorpo Anticitoplasma de Neutrófilos/tratamento farmacológico , Glucocorticoides/uso terapêutico , Conhecimentos, Atitudes e Prática em Saúde , Pacientes/psicologia , Idoso , Vasculite Associada a Anticorpo Anticitoplasma de Neutrófilos/diagnóstico , Vasculite Associada a Anticorpo Anticitoplasma de Neutrófilos/psicologia , Canadá , Progressão da Doença , Feminino , Glucocorticoides/efeitos adversos , Humanos , Entrevistas como Assunto , Masculino , Saúde Mental , Pessoa de Meia-Idade , Segurança do Paciente , Pesquisa Qualitativa , Qualidade de Vida , Recidiva , Indução de Remissão , Medição de Risco , Resultado do Tratamento , Reino Unido , Estados UnidosRESUMO
Objectives The aim of this paper is to explore the process and impact of co-locating evidence-based maternal and child service models to inform future implementation efforts. Methods As part of a state-wide evaluation of maternal and child home visiting programs, we conducted semi-structured interviews with administrators and home visitors from home visiting agencies across Pennsylvania. We collected 33 interviews from 4 co-located agencies. We used the Consolidated Framework for Implementation Research (CFIR) to describe the key elements mitigating implementation of multiple home visiting models. Results A primary advantage of co-location described by participants was the ability to increase the agency's base of eligible clients through the implementation of a model with different program eligibility (e.g. income, child age) than the existing agency offering. Model differences related to curriculum (e.g. content or intensity/meeting frequency) enabled programs to more selectively match clients to models. To recruit eligible clients, new models were able to build upon the existing service networks of the initial program. Co-location provided organizational opportunities for shared trainings, enabling administrative efficiencies and collaborative staff learning. Programs implemented strategies to build synergies with complementary model features, for instance using the additional program option to serve waitlisted clients and to transition services after one model is completed. Conclusions for Practice Considerable benefits are experienced when home visiting models co-locate. This research builds on literature encouraging collaboration among community agencies and provides insight on a specific facilitative approach. This implementation strategy informs policy across the social services spectrum and competitive funding contexts.
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Saúde da Criança , Atenção à Saúde/organização & administração , Serviços de Assistência Domiciliar/organização & administração , Serviços de Saúde Materno-Infantil/organização & administração , Cuidado Pós-Natal , Criança , Atenção à Saúde/métodos , Medicina Baseada em Evidências , Feminino , Humanos , Entrevistas como Assunto , Pennsylvania , Gravidez , Pesquisa QualitativaRESUMO
The purpose of this article is to investigate how cultural meanings associated with the left ventricular assist device (LVAD) inform acceptance and experience of this innovative technology when it is used as a destination therapy. We conducted open-ended, semistructured interviews with family caregivers and patients who had undergone LVAD-DT procedures at six U.S. hospitals. A grounded theory approach was used for the analysis. Thirty-nine patients and 42 caregivers participated. Participants described a sense of obligation to undergo the procedure because of its promise for salvation. However, once the device was implanted, patients described being placed into a liminal state of being neither sick nor healthy, with no culturally scripted role. Consideration of end-of-life decisions was complicated by the uncertainties about how patients with LVADs die. Pre-implantation communications among patient, family, and clinicians should take into account the impact of the technology on meaning, identity, and patient experience.
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Cuidadores/psicologia , Insuficiência Cardíaca/psicologia , Coração Auxiliar/psicologia , Pacientes/psicologia , Atitude Frente a Morte , Tomada de Decisões , Feminino , Insuficiência Cardíaca/terapia , Humanos , MasculinoRESUMO
PURPOSE: The Affordable Care Act (ACA) promotes the Patient-Centered Medical Home (PCMH) model as a way to improve healthcare quality, the patient experience, and has identified nurse-led primary care as a mechanism meeting the increasing demand for quality primary care. The purpose of this study was to investigate the implementation of a PCMH model in nurse-led primary care practices and to identify facilitators and barriers to the implementation of this model. METHODS: Data were collected through in-depth interviews with providers and staff in nurse-led practices. RESULTS: These data suggest two categories of processes that facilitate the integration of PCMH in the nurse-led practice setting: patient-oriented facilitators and organizational facilitators. In addition, a number of barriers were identified to implementing the PCMH model. Overall, these practices creatively engaged in the transformation process by structuring themselves as a complex adaptive system and building upon the core principles of nurse-led care. CONCLUSION: Since the core principles of nurse-led care map onto many of the same principles of the PCMH model, this study discusses the possibility that nurse-led practices may experience fewer barriers when transitioning into PCMHs.
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Assistência Centrada no Paciente , Padrões de Prática em Enfermagem , Humanos , Modelos Organizacionais , Qualidade da Assistência à Saúde , Estados UnidosRESUMO
BACKGROUND: Home visiting programs represent an important primary prevention strategy for adverse prenatal health behaviors; the various ways in which home visiting programs impact prenatal smoking cessation and reduction behaviors remain understudied. METHODS: Mixed methods approach using a retrospective cohort of propensity score matched home visiting clients and local-area comparison women with first births between 2008-2014 in a large Northeast state. Multivariable logistic and linear regression estimated third trimester prenatal tobacco smoking cessation and reduction. Additionally, qualitative interviews were conducted with 76 home visiting clients. RESULTS: A program effect was seen for smoking cessation such that clients who smoked less than ten cigarettes per day and those who smoked 20 or more cigarettes per day during the first trimester were more likely to achieve third trimester cessation than comparison women (p <0.01 and p = 0.01, respectively). Only for heavy smokers (20 or more cigarettes during the first trimester) was there a significant reduction in number of cigarettes smoked by the third trimester versus comparison women (p = 0.01). Clients expressed the difficulty of cessation, but addressed several harm-reduction strategies including reducing smoking in the house and wearing a smoking jacket. Clients also described smoking education that empowered them to ask others to not smoke or adopt other harm reducing behaviors when around their children. CONCLUSIONS: While a significant impact on smoking cessation was seen, this study finds a less-clear impact on smoking reduction among women in home visiting programs. As home visiting programs continue to expand, it will be important to best identify effective ways to support tobacco-related harm reduction within vulnerable families.
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Visita Domiciliar/estatística & dados numéricos , Cuidado Pré-Natal/psicologia , Abandono do Hábito de Fumar/psicologia , Fumar/psicologia , Adulto , Feminino , Humanos , New England , Gravidez , Cuidado Pré-Natal/métodos , Efeitos Tardios da Exposição Pré-Natal/induzido quimicamente , Efeitos Tardios da Exposição Pré-Natal/prevenção & controle , Pontuação de Propensão , Estudos Retrospectivos , Abandono do Hábito de Fumar/métodos , Produtos do Tabaco/estatística & dados numéricosRESUMO
INTRODUCTION: Hypertension is a major modifiable risk factor for cardiovascular and kidney disease, yet the proportion of adults whose hypertension is controlled is low. The patient-centered medical home (PCMH) is a model for care delivery that emphasizes patient-centered and team-based care and focuses on quality and safety. Our goal was to investigate changes in hypertension care under PCMH implementation in a large multipayer PCMH demonstration project that may have led to improvements in hypertension control. METHODS: The PCMH transformation initiative conducted 118 semistructured interviews at 17 primary care practices in southeastern Pennsylvania between January 2011 and January 2012. Clinicians (n = 47), medical assistants (n = 26), office administrators (n = 12), care managers (n = 11), front office staff (n = 7), patient educators (n = 4), nurses (n = 4), social workers (n = 4), and other administrators (n = 3) participated in interviews. Study personnel used thematic analysis to identify themes related to hypertension care. RESULTS: Clinicians described difficulties in expanding services under PCMH to meet the needs of the growing number of patients with hypertension as well as how perceptions of hypertension control differed from actual performance. Staff and office administrators discussed achieving patient-centered hypertension care through patient education and self-management support with personalized care plans. They indicated that patient report cards were helpful tools. Participants across all groups discussed a team- and systems-based approach to hypertension care. CONCLUSION: Practices undergoing PCMH transformation may consider stakeholder perspectives about patient-centered, team-based, and systems-based approaches as they work to optimize hypertension care.
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Atitude do Pessoal de Saúde , Hipertensão/terapia , Assistência Centrada no Paciente/normas , Atenção Primária à Saúde/organização & administração , Humanos , Entrevistas como Assunto , Modelos Organizacionais , Pennsylvania , AutocuidadoRESUMO
In 2% to 3% of cases, prenatal microarray testing detects deletions and duplications in a fetus' genome that are undetected by conventional cytogenetics. Many of these changes are associated with variable or uncertain symptomatology. Little is known about how couples experience uncertain results. This study analyzed 24 interviews with members of 12 heterosexual U.S. couples who received pathogenic or uncertain microarray prenatal testing results. Researchers used narrative analysis to examine couples' understanding and incorporation of findings into decision making regarding pregnancy termination. Couples felt unprepared for these findings and frustrated because scant information was available to aid interpretation. Women sought information and made decisions, and men marginalized their distress to support their wives. A shift in voice from first to second person indicated attempts to normalize emotional responses by making the process "common" to all couples. Families pursuing highly sensitive prenatal testing may need expert guidance to support decision making.
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Aborto Induzido , Tomada de Decisões , Narração , Diagnóstico Pré-Natal , Feminino , Humanos , Masculino , Gravidez , Cônjuges , IncertezaRESUMO
BACKGROUND: The quality of life (QOL) of caregivers of patients with LVAD-DT (Left Ventricular Assist Device as Destination Therapy) has not been well explored. METHODS: We used a concurrent mixed methods design. Caregivers (n = 42; average 60 years old, 82% female, 75% white) of patients (n = 39; average 68.3 years old, 83% male, 90% white) and providers (n = 27) from 6 LVAD-DT programs were recruited. We used the City of Hope Quality of Life Family Caregiver instrument, modified for LVAD-DT. Lower scores indicate poorer QOL. We analyzed open-ended questions with the use of Nvivo 10.0, using a modified grounded theory approach. RESULTS: The Psychologic subscale had the lowest average QOL score, followed by Social, Spiritual, and then Physical subscales. The composite mean average QOL score across the subscales was highest in caregivers <40 years of age and ≥70 years of age. There was a nonsignificant trend toward better QOL in male caregivers (P = .06). We sorted QOL items into tertiles based on the percentage of responses <5 (10-point Likert scale). Scores <5 in the 2nd tertile (items from Social and Spiritual subscales) were reported by many fewer respondents than the 1st tertile (items from the Psychologic subscale). In the 3rd tertile, <10% of respondents scored <5 on 15 of the items. In qualitative interviews psychologic and social themes predominated in discussing requisites for competent caregivers, stress in pre-implantation decision making, lack of psychologic preparation, impact on freedom/independence, daily worry about pump performance, and value of psychologic and social support. CONCLUSION: Support interventions for caregivers of patients with LVAD-DT should address the psychologic and social aspects that lead to poor QOL.
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Cuidadores/psicologia , Insuficiência Cardíaca/psicologia , Insuficiência Cardíaca/terapia , Coração Auxiliar/psicologia , Qualidade de Vida/psicologia , Inquéritos e Questionários , Adulto , Idoso , Cuidadores/tendências , Feminino , Insuficiência Cardíaca/epidemiologia , Ventrículos do Coração , Coração Auxiliar/tendências , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
OBJECTIVE: Chromosome microarray analysis is poised to take a significant place in the prenatal setting given its increased yield over standard karyotyping, but concerns regarding ethical and counseling challenges remain, especially associated with the risk of uncertain and incidental findings. Guidelines recommend patients receiving prenatal screening to undergo genetic counseling prior to testing, but little is known about women's specific pre-testing and post-testing informational needs, as well as their preference for return of various types of results. METHODS: The present study surveys 199 prenatal genetic counselors who have counseled patients undergoing chromosome microarray analysis testing and 152 women who have undergone testing on the importance of understanding pre-test information, return of various types of results, and resources made available following an abnormal finding. RESULTS: Counselors and patients agree on many aspects, although findings indicate patients consider all available information very important, while genetic counselors give more varying ratings. CONCLUSION: Counseling sessions would benefit from information personalized to a patient's particular needs and a shared decision-making model, to reduce informational overload and avoid unnecessary anxiety. Additionally, policies regarding the return of various types of results are needed. © 2015 John Wiley & Sons, Ltd.
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Atitude do Pessoal de Saúde , Aberrações Cromossômicas , Aconselhamento Genético/psicologia , Testes Genéticos , Preferência do Paciente/psicologia , Gravidez/psicologia , Diagnóstico Pré-Natal , Adulto , Feminino , Aconselhamento Genético/métodos , Testes Genéticos/métodos , Pesquisas sobre Atenção à Saúde , Humanos , Cariotipagem , Masculino , Análise em Microsséries , Pessoa de Meia-Idade , Educação de Pacientes como Assunto/métodos , Participação do Paciente/psicologia , Diagnóstico Pré-Natal/métodos , Estados UnidosRESUMO
Because of the higher yield over traditional chromosomal analysis, chromosomal microarray analysis (CMA) is being used increasingly in prenatal diagnosis. Unfortunately, the clinical implication of many copy number variants found on prenatal CMA is uncertain, complicating genetic counseling. Recognizing that uncertain results will be encountered frequently as more of the genome is assayed prenatally, we set out to understand the experiences and needs of genetic counselors when counseling patients about uncertain prenatal microarray results, their comfort with various aspects of prenatal genetic counseling, and their interest in additional education and training about prenatal microarray testing. We first interviewed 10 genetic counselors about their experiences of providing pre- and post-test genetic counseling about prenatal CMA. Based on the findings from the counselor interviews, we developed items for a survey to assess the prevalence of genetic counselors' attitudes towards, experience and comfort with, and educational needs regarding prenatal CMA. Based on surveys completed by 193 prenatal genetic counselors, we found that when there is an uncertain CMA result, only 59% would be comfortable providing genetic counseling and only 43% would be comfortable helping a patient make a decision about pregnancy termination. Being less comfortable was associated with seeing fewer patients having prenatal CMA testing. Respondents expressed a high degree of interest in additional education about prenatal CMA and counseling about uncertain results. Further genetic counselor education and training aimed at improving counselors' personal comfort with uncertain results and communicating about them with patients is needed.
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Atitude do Pessoal de Saúde , Aberrações Cromossômicas , Aconselhamento Genético/métodos , Testes Genéticos/métodos , Diagnóstico Pré-Natal/métodos , Adulto , Feminino , Aconselhamento Genético/psicologia , Humanos , Análise em Microsséries/métodos , GravidezRESUMO
The purpose of this study was to understand the barriers and facilitators among diverse health care and community organization stakeholders implementing a populationbased social determinants of health (SDOH) intervention. The SDOH intervention included three core programs: SDOH screening, a community health worker program, and a digital referral platform. After one year of implementation, we conducted semi-structured qualitative interviews with clinical and community-based organization stakeholders about (1) the three SDOH programs, (2) organizational implementation strategies, (3) interactions with partner organizations, and (4) perceived target population needs. Findings from the first year of implementation highlighted several factors to consider when designing and implementing SDOH programming, including (1) the successful features of the three SDOH programs, (2) the local implementation strategies and challenges across organizations, (3) the impact of broader community needs and resource availability on implementation, and (4) the importance of intentionally fostering relationships and collaboration among partner organizations.
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Determinantes Sociais da Saúde , Humanos , Pesquisa Qualitativa , Comportamento Cooperativo , Agentes Comunitários de Saúde/organização & administração , Entrevistas como Assunto , Encaminhamento e Consulta/organização & administração , Desenvolvimento de ProgramasRESUMO
About one in four women in the US report having experienced some form of intimate partner violence (IPV) during their lifetime and an estimated 15.5 million children live in families in which IPV occurred in the past year. Families of young children with IPV experiences often face complex needs and require well-coordinated efforts among service providers across social and health sectors. One promising partnership aims to support pregnant and parenting IPV survivors through coordination between IPV agencies and community-based maternal and early childhood home visiting programs. This study used social network analysis (SNA) to understand the interconnectedness of the system of IPV prevention and intervention for families with young children in a large US city. The SNA included 43 agencies serving this population across various service domains spanning IPV, legal, maternal and child health, and public benefit programs. An SNA survey collected data on four forms of collaboration between agencies, including formal administrative relationship, referral reciprocity, case consultation, and shared activities in community committees/organizing bodies. Density and centrality were the primary outcomes of interest. A community detection analysis was performed as a secondary analysis. The overall level of interconnectedness between the 43 responding agencies was low. Making referrals to each other was the most common form of collaboration, with a network density of 30%. IPV agencies had the highest average number of connections in the networks. There was a high level of variation in external collaborations among home visiting agencies, with several home visiting agencies having very few connections in the community but one home visiting program endorsing collaborative relationships with upwards of 38 partner agencies in the network. In serving families at risk for IPV, home visiting agencies were most likely to have referral relationships with mental health provider agencies and substance use disorder service agencies. A community detection analysis identified distinct communities within the network and demonstrated that certain agency types were more connected to one another while others were typically siloed within the network. Notably, the IPV and home visiting communities infrequently overlapped. Sensitivity analyses showed that survey participants' knowledge of their agencies' external collaborations varied by their work roles and agencies overall had low levels of consensus about their connectedness to one another. We identified a heterogeneous service system available to families of young children at-risk for or experiencing IPV. Overall inter-agency connectedness was low, with many siloed agencies and a lack of shared knowledge of community resources. Understanding current collaborations, silos, and centrality of agencies is an effective public health tool for allocating scarce resources across diverse service sectors to efficiently improve the system serving families experiencing IPV.
Assuntos
Violência por Parceiro Íntimo , Análise de Rede Social , Humanos , Violência por Parceiro Íntimo/prevenção & controle , Violência por Parceiro Íntimo/estatística & dados numéricos , Feminino , Estados Unidos , Gravidez , CidadesRESUMO
Background: Research gaps exist on the use of medications for opioid use disorder (OUD) among birthing people. Methods: This retrospective cohort study included people who underwent childbirth deliveries during 2017-2020 and had a diagnosis of OUD identified from a national private insurance claims database. Buprenorphine prescriptions received during the year before childbirth and the year after childbirth were obtained from pharmacy claims. Logistic regressions were used to estimate associations between receipt of buprenorphine and individual and state-level factors. Results: Among a sample of 1,523 birthing people diagnosed with OUD, 540 (35.5 %) received buprenorphine during the pregnancy or postpartum periods. About half (51.5 %) of new recipients of buprenorphine received treatment for at least six months and, of those, one-third experienced a treatment interruption. The buprenorphine receipt rate differed significantly by race and ethnicity: 28.8 % of non-Hispanic Black birthing people with OUD and 22.8 % of Hispanic birthing people with OUD received buprenorphine treatment in contrast to 37.7 % of non-Hispanic white birthing people (aOR 0.53 [95 % CI 0.35-0.81] and 0.59 [95 % CI 0.37-0.96], respectively). The buprenorphine use rate increased over time from 29.7 % in 2017 to 42.9 % in 2020. Birthing people living in states with punitive policies related to substance use in pregnancy had the lowest buprenorphine use rate of 22.7 % as compared to 43.0 % in states with least restrictive policies. Conclusion: In this national sample of privately-insured individuals, by 2020, 42.9 % of birthing people with OUD received buprenorphine treatment. Treatment discontinuation and interruptions were common in the period surrounding childbirth.
RESUMO
INTRODUCTION: Children with medical complexity (CMC) require frequent medical care and are at risk of recurrent hospitalizations. The Family Medical Leave Act (FMLA) allows some workers to take unpaid leave from work to care for family members. This study examines caregiving obligations of parents of CMC, the availability and appropriateness of FMLA in facilitating their roles as caregivers and employees, and how these challenges affect employment and financial security. METHOD: Parents of CMC were recruited from a primary care pediatric care management program for semistructured interviews. An integrated approach, using both deductive and inductive codes, was used to conduct a thematic analysis. RESULTS: All 16 respondents were female, with half working full-time, five working part-time, and three not employed at the time of participation. On average, their CMC experienced 1.8 hospitalizations in the prior 12 months. Parents described that caring for CMC required ongoing and unpredictable time commitments that conflicted with job duties and schedules. This conflict led to frequent employment changes that negatively impacted parents' eligibility for FMLA, their financial health, and their own well-being. Parents often described not having access to FMLA due to exhausting the allotted time, part-time status, insufficient tenure at their job, or the inability to take unpaid leave. Parents depended on informal workplace policies and relationships with supervisors to maintain employment, as well as personal and formal supports to care for CMC and their families' financial stability. DISCUSSION: Parents want and need to work in order to support their families and pay for the added expenses related to care for their CMC. Remaining active in the workforce requires that they have flexible schedules that accommodate their unpredictable and ongoing caregiving responsibilities. The eligibility criteria and unpaid nature of FMLA, however, make employment and financial stability elusive for caregivers of CMC. (PsycInfo Database Record (c) 2023 APA, all rights reserved).