RESUMO
OBJECTIVE: This qualitative study applies a community-based participatory research approach to elicit formative data on pediatric patient experiences of racism in the health care setting and to explore clinic-based opportunities for supporting pediatric patients experiencing racism. METHODS: The study is situated within the outpatient practice of a large tertiary academic medical center in a midsize Midwestern city. Community partners were involved in all aspects of the research, including research protocol design, recruitment, data analysis, community dissemination, and manuscript preparation. Participants were youth between 11 and 18 years, in middle or high school, self-identifying as a person of color, Latinx or Indigenous who answered yes to the question "have you ever experienced race-related prejudice and discrimination?" Parent/guardians of youth meeting inclusion criteria participated in separate focus groups. Data were analyzed using an interpretative phenomenological analysis approach. RESULTS: Major findings were divided into 2 categories: 1) racism-related experiences in the health care setting; and 2) patient and parent/guardian recommendations to support pediatric patients experiencing racism. Among health care setting experiences, primary emerging themes included racism experienced in the health care setting, patient-clinician communication around racism, patient-clinician concordance, and high-quality clinical care. Recommendations were presented within the 4 domains of racism: intrapersonal, interpersonal, structural, and institutional. CONCLUSIONS: Racism experiences worsen child biological, psychological, and behavioral functioning, yet research is lacking on how health care professionals may best support pediatric patients experiencing racism. Study findings suggest opportunities for providing safer and more supportive health care spaces for youth experiencing racism.
Assuntos
Pesquisa Participativa Baseada na Comunidade , Grupos Focais , Pesquisa Qualitativa , Racismo , Humanos , Adolescente , Masculino , Feminino , Criança , Relações Médico-Paciente , Disparidades em Assistência à Saúde/etnologiaRESUMO
Psychologists have an ethical responsibility to advance health equity and can play a significant role in improving health care experiences for families racialized as Black, including those with sickle cell disease (SCD), a group of genetic blood disorders primarily affecting communities of color. Parents of children with SCD report experiences of stigma and discrimination due to racism in the health care system. The current commentary describes the application of antiracism and participatory strategies to the research design, implementation, and dissemination of a behavioral medicine clinical trial (Engage-HU; NCT03442114) of shared decision-making (SDM) for pediatric patients with SCD, including (a) the development of a research question to promote justice for racialized groups; (b) a focus on "redressing imbalances" through SDM and a multidisciplinary, inclusive research team led by a Black psychologist; (c) community participatory approaches through the integration of stakeholder feedback across the study; and (d) centering context by attending to structural realities in response to the COVID-19 and racism pandemics. With attention to the fact that most primary caregivers of children with SCD are Black women, an intersectionality lens was applied. Implications and considerations for psychologists working to advance health equity in medical settings are also discussed. (PsycInfo Database Record (c) 2023 APA, all rights reserved).
Assuntos
Medicina do Comportamento , COVID-19 , Racismo , Humanos , Criança , Feminino , Antirracismo , Atenção à SaúdeRESUMO
OBJECTIVE: To report preliminary psychometric properties of PROMIS® assessments among emerging adults with sickle cell disease (SCD). METHOD: Forty-five emerging adults with SCD ages 18-24 (M = 20.81, SD = 1.73) completed PROMIS® Pain Interference and Fatigue short forms and the Pediatric Quality of Life Inventory (PedsQL). Chart review was used to obtain information regarding SCD complications and health care utilization in the 3 years prior to study enrollment. Multivariate path analysis was used to compare PROMIS® scores by disease severity and use of disease-modifying therapies. Cronbach's alpha was used to evaluate internal consistency, and Pearson correlations assessed convergent validity between PROMIS® measures and the PedsQL. RESULTS: Internal consistency was excellent for PROMIS® Pain Interference (α = .95) and good for PROMIS® Fatigue (α = .85). Associations between PROMIS® measures and PedsQL subscales were in the expected direction and large in magnitude (all ps < .001). There were no differences in PROMIS® scores based on disease severity or use of disease-modifying therapy (ps = .14-.86). CONCLUSIONS: Findings provide preliminary evidence of validity and reliability of the PROMIS® Pain Interference and Fatigue short forms among emerging adults with SCD. Additional research is needed to replicate these findings in larger samples and assess sensitivity to change over time. (PsycINFO Database Record (c) 2019 APA, all rights reserved).
Assuntos
Anemia Falciforme/epidemiologia , Medidas de Resultados Relatados pelo Paciente , Psicometria/métodos , Qualidade de Vida/psicologia , Adolescente , Adulto , Anemia Falciforme/patologia , Anemia Falciforme/psicologia , Feminino , Humanos , Masculino , Reprodutibilidade dos Testes , Inquéritos e Questionários , Adulto JovemRESUMO
The newest iteration of the Diagnostic and Statistical Manual-fifth edition (DSM-5), is the first to include the diagnosis of disruptive mood dysregulation disorder (DMDD). The assessment and diagnosis of psychopathology in children are complicated, particularly for mood disorders. Practice can be guided by the use of well-validated instruments. However, as this is a new diagnosis existing instruments have not yet been evaluated for the diagnosis of DMDD. This study seeks to provide a method for using existing structured interview instruments to assess for this contemporary diagnosis. The Children's Interview for Psychiatric Syndromes (ChIPS) and the Mini-International Neuropsychiatric Interview for Children and Adolescents (MINI-KID) are reviewed and existing items consistent with a diagnosis of DMDD are identified. Finally, a case is presented using both measures and applying the theoretical items identified to illustrate how one might use these measures to assess DMDD. Limitations and future directions are discussed.