RESUMO
Systemic racism is pervasive in US society and disproportionately limits opportunities for education, work, and health for historically marginalized and minoritized racial and ethnic groups, making it an urgent issue of social justice. Because systemic racism is a social determinant of health prevalent across multiple social and institutional structures, it requires multilevel intervention approaches using effective designs and analytic methods to measure and evaluate outcomes. Racism is a fundamental cause of poor health outcomes, including mental health outcomes; thus, mental health services and programs that address racism and discrimination are key to promoting positive mental health of racial and ethnic minority youth. While multilevel interventions are well-suited for improving outcomes like youth mental health disparities, their evaluation poses unique methodological challenges, requiring specialized design and analytic approaches. There has been limited methodological guidance provided to researchers on how to test multilevel interventions using approaches that balance methodological rigor, practicality, and acceptability across stakeholder groups, especially within communities most affected by systemic racism. This paper addresses this gap by providing an example of how to rigorously evaluate a hypothetical, theoretically based, multilevel intervention promoting mental health equity in three US school systems using an anti-racist approach intervening at the macro- (i.e., school system), meso- (i.e., school), and micro- (i.e., family and student) levels to improve mental health in adolescents. We describe the design, sample size considerations, and analytic methods to comprehensively evaluate its effectiveness while exploring the extent to which the components interact synergistically to improve outcomes. The methodological approach proposed can be adapted to other multilevel interventions that include strategies addressing macro-, meso-, and micro-levels of influence.
Assuntos
Equidade em Saúde , Humanos , Adolescente , Saúde Mental , Masculino , Instituições Acadêmicas , Feminino , Racismo/prevenção & controleRESUMO
Importance: Palliative care consultations in intensive care units (ICUs) are increasingly prompted by clinical characteristics associated with mortality or resource utilization. However, it is not known whether these triggers reflect actual palliative care needs. Objective: To compare unmet needs by clinical palliative care trigger status (present vs absent). Design, Setting, and Participants: This prospective cohort study was conducted in 6 adult medical and surgical ICUs in academic and community hospitals in North Carolina between January 2019 and September 2020. Participants were consecutive patients receiving mechanical ventilation and their family members. Exposure: Presence of any of 9 common clinical palliative care triggers. Main Outcomes and Measures: The primary outcome was the Needs at the End-of-Life Screening Tool (NEST) score (range, 0-130, with higher scores reflecting greater need), which was completed after 3 days of ICU care. Trigger status performance in identifying serious need (NEST score ≥30) was assessed using sensitivity, specificity, positive and negative likelihood ratios, and C statistics. Results: Surveys were completed by 257 of 360 family members of patients (71.4% of the potentially eligible patient-family member dyads approached) with a median age of 54.0 years (IQR, 44-62 years); 197 family members (76.7%) were female, and 83 (32.3%) were Black. The median age of patients was 58.0 years (IQR, 46-68 years); 126 patients (49.0%) were female, and 88 (33.5%) were Black. There was no difference in median NEST score between participants with a trigger present (45%) and those with a trigger absent (55%) (21.0; IQR, 12.0-37.0 vs 22.5; IQR, 12.0-39.0; P = .52). Trigger presence was associated with poor sensitivity (45%; 95% CI, 34%-55%), specificity (55%; 95% CI, 48%-63%), positive likelihood ratio (1.0; 95% CI, 0.7-1.3), negative likelihood ratio (1.0; 95% CI, 0.8-1.2), and C statistic (0.50; 95% CI, 0.44-0.57). Conclusions and Relevance: In this cohort study, clinical palliative care trigger status was not associated with palliative care needs and no better than chance at identifying the most serious needs, which raises questions about an increasingly common clinical practice. Focusing care delivery on directly measured needs may represent a more person-centered alternative.
Assuntos
Estado Terminal/terapia , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Indicadores Básicos de Saúde , Avaliação das Necessidades , Cuidados Paliativos/estatística & dados numéricos , Adulto , Idoso , Família , Feminino , Humanos , Unidades de Terapia Intensiva , Masculino , Pessoa de Meia-Idade , North Carolina , Valor Preditivo dos Testes , Estudos Prospectivos , Sensibilidade e EspecificidadeRESUMO
RATIONALE: The quality and patient-centeredness of intensive care unit (ICU)-based palliative care delivery is highly variable. OBJECTIVE: To develop and pilot an app platform for clinicians and ICU patients and their family members that enhances the delivery of needs-targeted palliative care. METHODS: In the development phase of the study, we developed an electronic health record (EHR) system-integrated mobile web app system prototype, PCplanner (Palliative Care Planner). PCplanner screens the EHR for ICU patients meeting any of five prompts (triggers) for palliative care consultation, allows families to report their unmet palliative care needs, and alerts clinicians to these needs. The evaluation phase included a prospective before/after study conducted at a large academic medical center. Two control populations were enrolled in the before period to serve as context for the intervention. First, 25 ICU patients who received palliative care consults served as patient-level controls. Second, 49 family members of ICU patients who received mechanical ventilation for at least 48 hours served as family-level controls. Afterward, 14 patients, 18 family members, and 10 clinicians participated in the intervention evaluation period. Family member outcomes measured at baseline and 4 days later included acceptability (Client Satisfaction Questionnaire [CSQ]), usability (Systems Usability Scale [SUS]), and palliative care needs, assessed with the adapted needs of social nature, existential concerns, symptoms, and therapeutic interaction (NEST) scale; the Patient-Centeredness of Care Scale (PCCS); and the Perceived Stress Scale (PSS). Patient outcomes included frequency of goal concordant treatment, hospital length of stay, and discharge disposition. RESULTS: Family members reported high PCplanner acceptability (mean CSQ, 14.1 [SD, 1.4]) and usability (mean SUS, 21.1 [SD, 1.7]). PCplanner family member recipients experienced a 12.7-unit reduction in NEST score compared with a 3.4-unit increase among controls (P = 0.002), as well as improved mean scores on the PCCS (6.6 [SD, 5.8]) and the PSS (-0.8 [SD, 1.9]). The frequency of goal-concordant treatment increased over the course of the intervention (n = 14 [SD, 79%] vs. n = 18 [SD, 100%]). Compared with palliative care controls, intervention patients received palliative care consultation sooner (3.9 [SD, 2.7] vs. 6.9 [SD, 7.1] mean days), had a shorter mean hospital length of stay (20.5 [SD, 9.1] vs. 22.3 [SD, 16.0] patient number), and received hospice care more frequently (5 [36%] vs. 5 [20%]), although these differences were not statistically significant. CONCLUSIONS: PCplanner represents an acceptable, usable, and clinically promising systems-based approach to delivering EHR-triggered, needs-targeted ICU-based palliative care within a standard clinical workflow. A clinical trial in a larger population is needed to evaluate its efficacy.
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Estado Terminal/terapia , Registros Eletrônicos de Saúde/organização & administração , Aplicativos Móveis , Cuidados Paliativos/métodos , Assistência Centrada no Paciente/organização & administração , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Unidades de Terapia Intensiva , Masculino , Pessoa de Meia-Idade , North Carolina , Avaliação de Resultados em Cuidados de Saúde , Satisfação do Paciente/estatística & dados numéricos , Projetos Piloto , Estudos Prospectivos , Inquéritos e QuestionáriosRESUMO
The purpose of our study was to explore the social determinants of health for Black mothers living with HIV in the southeastern region of the United States. In this exploratory study, we used qualitative methods of in-depth interviewing and photo elicitation at three time points to provide a comprehensive examination of the meaning that the constructs held for participants (n = 18). The social determinants of health, identified primarily as positive health determinants by the participants, included social support, religion, animal companions, and the physical environment. The social determinants of health identified as mixed determinants, having both positive and negative qualities, were transportation and housing. Each of these social determinants is presented with definitions and exemplars. Additionally, aspects of each determinant of health that may be meaningfully addressed through process and structural level interventions are explored.
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Negro ou Afro-Americano/psicologia , Infecções por HIV/etnologia , Mães/psicologia , Fotografação , Determinantes Sociais da Saúde , Estigma Social , Apoio Social , Adulto , Animais , Feminino , Disparidades nos Níveis de Saúde , Habitação , Humanos , Entrevistas como Assunto , Animais de Estimação , Pesquisa Qualitativa , Religião , Fatores Socioeconômicos , Sudeste dos Estados Unidos , Meios de TransporteRESUMO
OBJECTIVE: Addressing the quality gap in ICU-based palliative care is limited by uncertainty about acceptable models of collaborative specialist and generalist care. Therefore, we characterized the attitudes of physicians and nurses about palliative care delivery in an ICU environment. DESIGN: Mixed-methods study. SETTING: Medical and surgical ICUs at three large academic hospitals. PARTICIPANTS: Three hundred three nurses, intensivists, and advanced practice providers. MEASUREMENTS AND MAIN RESULTS: Clinicians completed written surveys that assessed attitudes about specialist palliative care presence and integration into the ICU setting, as well as acceptability of 23 published palliative care prompts (triggers) for specialist consultation. Most (n = 225; 75%) reported that palliative care consultation was underutilized. Prompting consideration of eligibility for specialist consultation by electronic health record searches for triggers was most preferred (n = 123; 41%); only 17 of them (6%) felt current processes were adequate. The most acceptable specialist triggers were metastatic malignancy, unrealistic goals of care, end of life decision making, and persistent organ failure. Advanced age, length of stay, and duration of life support were the least acceptable. Screening led by either specialists or ICU teams was equally preferred. Central themes derived from qualitative analysis of 65 written responses to open-ended items included concerns about the roles of physicians and nurses, implementation, and impact on ICU team-family relationships. CONCLUSIONS: Integration of palliative care specialists in the ICU is broadly acceptable and desired. However, the most commonly used current triggers for prompting specialist consultation were among the least well accepted, while more favorable triggers are difficult to abstract from electronic health record systems. There is also disagreement about the role of ICU nurses in palliative care delivery. These findings provide important guidance to the development of collaborative care models for the ICU setting.
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Atitude do Pessoal de Saúde , Unidades de Terapia Intensiva , Enfermeiras e Enfermeiros/psicologia , Cuidados Paliativos , Papel do Médico , Médicos/psicologia , Especialização , Estudos Transversais , Atenção à Saúde , Registros Eletrônicos de Saúde , Conhecimentos, Atitudes e Prática em Saúde , Hospitais Universitários , Humanos , Unidades de Terapia Intensiva/organização & administração , Papel do Profissional de Enfermagem , Cuidados Paliativos/normas , Melhoria de Qualidade , Encaminhamento e Consulta , Inquéritos e Questionários , Estados UnidosRESUMO
Heightened awareness of the social determinants of health by health scientists and clinicians has failed to translate into significant progress in the amelioration of those social determinants contributing to health inequities. The purpose of this article is to broaden the discussion about conceptual approaches nurse scientists can use to address health and health inequities. We will apply an intersectional approach to the study of the social determinants of health for African American mothers living with human immunodeficiency virus and through this explore the utility of an intersectional approach to generate knowledge in nursing.
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Negro ou Afro-Americano , Infecções por HIV/enfermagem , Disparidades nos Níveis de Saúde , Disparidades em Assistência à Saúde , Mães , Determinantes Sociais da Saúde , Estigma Social , Atitude do Pessoal de Saúde , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Racismo , Fatores Sexuais , Fatores Socioeconômicos , Estados UnidosRESUMO
OBJECTIVE: To characterize the effects of critical illness in the daily lives and functioning of acute respiratory distress syndrome survivors. Survivors of acute respiratory distress syndrome, a systemic critical illness, often report poor quality of life based on responses to standardized questionnaires. However, the experiences of acute respiratory distress syndrome survivors have not been reported. DESIGN: We conducted semistructured interviews with 23 acute respiratory distress syndrome survivors and 24 caregivers 3 to 9 mos after intensive care unit admission, stopping enrollment after thematic saturation was reached. Transcripts were analyzed, using Colaizzi's qualitative methodology, to identify significant ways in which survivors' critical illness experience impacted their lives. SETTING: Medical and surgical intensive care units of an academic medical center and a community hospital. PATIENTS: We recruited consecutively 31 acute respiratory distress syndrome survivors and their informal caregivers. Eight patients died before completing interviews. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Participants related five key elements of experience as survivors of acute respiratory distress syndrome: 1) pervasive memories of critical care; 2) day-to-day impact of new disability; 3) critical illness defining the sense of self; 4) relationship strain and change; and 5) ability to cope with disability. Survivors described remarkable disability that persisted for months. Caregivers' interviews revealed substantial strain from caregiving responsibilities as well as frequent symptom minimization by patients. CONCLUSIONS: The diverse and unique experiences of acute respiratory distress syndrome survivors reflect the global impact of severe critical illness. We have identified symptom domains important to acute respiratory distress syndrome patients who are not well represented in existing health outcomes measures. These insights may aid the development of targeted interventions to enhance recovery and return of function after acute respiratory distress syndrome.
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Atividades Cotidianas/psicologia , Cuidadores/psicologia , Cuidados Críticos/psicologia , Qualidade de Vida/psicologia , Síndrome do Desconforto Respiratório/psicologia , Sobreviventes/psicologia , Adaptação Psicológica , Adulto , Idoso , Imagem Corporal , Efeitos Psicossociais da Doença , Cultura , Avaliação da Deficiência , Empatia , Feminino , Seguimentos , Humanos , Masculino , Rememoração Mental , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde , Equipe de Assistência ao Paciente , Autoimagem , Papel do Doente , Apoio Social , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Transtornos de Estresse Pós-Traumáticos/psicologiaRESUMO
PURPOSE: To explore the influence of poverty on the parenting experience and maternal developmental trajectory of Lumbee mothers with medically fragile infants. DESIGN: A multiple-case study design using secondary data from a larger longitudinal study of parental role attainment with medically fragile infants. SAMPLE: Five cases involving mothers who were Lumbee Indians and who had medically fragile infants. RESULTS: The key features of the mothers' talk about their parenting experiences were organized into categories that fit into five inductively derived themes related to poverty. IMPLICATIONS: Health care professionals need to be aware of how the context of living in poverty affects mothers of high-risk infants who are hospitalized in tertiary care units. In particular, low-income mothers, especially American Indians living in high-poverty areas, urgently need improved community resources such as access to birth control; early prenatal care; programs to help reduce drug, alcohol, and tobacco use both during and following pregnancy; and follow-up health and developmental services for their infants.
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Atitude Frente a Saúde/etnologia , Indígenas Norte-Americanos/etnologia , Doenças do Recém-Nascido/etnologia , Mães/psicologia , Poder Familiar/etnologia , Pobreza/etnologia , Adaptação Psicológica , Adolescente , Adulto , Feminino , Acessibilidade aos Serviços de Saúde , Necessidades e Demandas de Serviços de Saúde , Hospitalização , Humanos , Recém-Nascido , Estudos Longitudinais , Comportamento Materno/etnologia , Mães/educação , Mães/estatística & dados numéricos , North Carolina , Pesquisa Metodológica em Enfermagem , Pobreza/estatística & dados numéricos , Gravidez não Planejada/etnologia , Cuidado Pré-Natal , Pais Solteiros/educação , Pais Solteiros/psicologia , Pais Solteiros/estatística & dados numéricos , Apoio Social , Inquéritos e Questionários , Meios de TransporteRESUMO
To improve care of children who die in acute care settings there is a need to develop a clearer understanding of the barriers to provision of palliative care. The purpose of this study was to describe the experiences and views of health care providers in giving care to children who have undergone intensive therapies for life-threatening illnesses. A qualitative, descriptive design was conducted in the intensive care nursery, pediatric intensive care unit, and pediatric blood and marrow transplant unit at a southeastern US medical center. Purposive sampling with variation on role, years of experience, ethnicity, and gender was used to select the 17 health care providers. Findings were organized into three broad categories: (a) Palliative Care as an Added Dimension in the Illness Trajectory, (b) Palliative Care Moves Away From Curative Treatment, and (c) Professional Issues. Relevant themes were identified within each category. Most participants viewed palliative care as a changed dimension of care that is instituted once it is known that a child is dying. Three challenges in employing palliative care to acutely ill infants and children were identified: (a) finding the true dying point, (b) making the transition to palliative care, and (c) turning care over to an outside palliative care team at a critical juncture of caring. Professional issues in providing palliative care included inadequate preparation and, especially for nurses, the crossing of professional boundaries. An integrated model of palliative care is needed that is initiated at diagnosis and allows for the bidirectional transitioning across the illness and treatment trajectories.