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1.
Prog Community Health Partnersh ; 18(1): 103-112, 2024.
Article in English | MEDLINE | ID: mdl-38661831

ABSTRACT

BACKGROUND: Implementation of evidence-based interventions to reduce depression among uninsured Latinx patients who are at high risk of depression are rare. OBJECTIVES: Our goal was to evaluate Strong Minds, a language and culturally tailored, evidence-based intervention adapted from cognitive behavioral therapy (CBT) for mild-moderate depression and anxiety, delivered by community health workers (CHWs) in Spanish to uninsured Latinx immigrants. METHODS: As part of the pilot, 35 participants, recruited from a free community primary care clinic, completed Strong Minds. Assessments and poststudy interviews were conducted. Paired t-tests were used to assess change of depressive symptoms at 3 and 6 months. LESSONS LEARNED: CHW delivery of depression care to this population was feasible and among those who completed the program, preliminary evidence of depression outcomes suggests potential benefit. CHWs had specific training and support needs related to mental health care delivery. CONCLUSIONS: Further implementation studies of depression care interventions using CHWs for underserved Latinx is needed.


Subject(s)
Community Health Workers , Depression , Hispanic or Latino , Medically Uninsured , Humans , Hispanic or Latino/psychology , Community Health Workers/organization & administration , Community Health Workers/psychology , Pilot Projects , Female , Male , Adult , Baltimore , Middle Aged , Depression/therapy , Depression/ethnology , Cognitive Behavioral Therapy/methods , Community-Based Participatory Research , Program Evaluation
2.
Aging Ment Health ; 27(10): 1975-1982, 2023.
Article in English | MEDLINE | ID: mdl-37278694

ABSTRACT

BACKGROUND AND OBJECTIVES: Studies have shown that cultural norms such as filial responsibility and familism operate in the Korean American caregiving context. The purpose of our study is to understand the practice of Korean American caregivers who provide care to a family member living with dementia and their dementia care support needs. MATERIALS AND METHODS: We conducted 2 focus groups and individual semi-structured interviews with a total of 20 Korean American caregivers. We used inductive thematic analysis to guide coding and generation of themes. RESULTS: Three themes were identified; 1) intersectionality in the Korean American caregiver experience, 2) complex family dynamics, and 3) dementia care barriers and caregiver support needs. Within the dyadic relationship and the family, cultural identity, generational, acculturational, and language factors shaped the caregiver experience. The need to navigate bicultural norms could lead to tensions but also provide opportunity for caregivers to consider self-care and use external supports to decrease the work of caregiving. Family was the unit of caregiving and caregiving was divided among family members based on acculturation and language fluency. Caregivers desired both medical information combined with knowledge that experienced lay support could provide. Support that reflects their cultural context was valued. DISCUSSION: Findings suggest the importance of understanding the diversity of response to strong elder care norms among Korean American caregivers and the intersection of multiple factors that influence their caregiving experience. Integrating acculturation and generational assessments may be useful as a way to tailor interventions to optimize engagement in dementia care interventions.


Subject(s)
Caregivers , Dementia , Humans , Acculturation , Asian , Focus Groups
3.
Am J Med Genet A ; 191(4): 983-994, 2023 04.
Article in English | MEDLINE | ID: mdl-36710374

ABSTRACT

Sturge-Weber Syndrome (SWS) is a rare vascular malformation disorder characterized by abnormal blood vessels in the brain, skin, and eye. SWS is most commonly caused by a somatic mosaic GNAQ-p.Arg183Gln variant. In this series, 12 patients presented for clinical evaluation of SWS but were noted to have atypical features, and therefore germline and/or somatic genetic testing was performed. Atypical features included extensive capillary malformation on the body as well as the face, frontal bossing, macrocephaly, telangiectasia, overgrowth of extremities, absence of neurologic signs and symptoms, and family history of vascular malformations. Five patients had a somatic GNAQ or GNA11 pathogenic variant, one patient had a somatic mosaic likely-pathogenic variant in PIK3CA, and another one had a somatic mosaic deletion that disrupted PTPRD. The other five patients had germline variants in RASA1, EPHB4, or KIT. Our findings suggest that patients presenting for SWS evaluation who have atypical clinical characteristics may have pathogenic germline or somatic variants in genes other than GNAQ or GNA11. Broad germline and somatic genetic testing in these patients with atypical findings may have implications for medical care, prognosis, and trial eligibility.


Subject(s)
Sturge-Weber Syndrome , Humans , Sturge-Weber Syndrome/genetics , GTP-Binding Protein alpha Subunits, Gq-G11/genetics , Capillaries/abnormalities , Skin/pathology , Genetic Testing , p120 GTPase Activating Protein/genetics
4.
Pediatr Neurol ; 139: 24-34, 2023 02.
Article in English | MEDLINE | ID: mdl-36508880

ABSTRACT

BACKGROUND: A prior drug trial of cannabidiol for treatment-resistant epilepsy in patients with Sturge-Weber syndrome (SWS), a rare neurovascular condition, implicated improvements in neurological, quality of life (QOL), neuropsychologic, psychiatric, and motor outcomes. METHODS: Ten subjects with SWS brain involvement, controlled seizures, and cognitive impairments received study drug in this Johns Hopkins institutional review board-approved, open-label, prospective drug trial. Oral cannabidiol was taken for six months (dose ranged from 5 to 20 mg/kg/day). SWS neuroscore, port-wine birthmark score, QOL, and adverse events were recorded every four to 12 weeks. Neuropsychologic, psychiatric, and motor assessments were administered at baseline and six months' follow-up. Most evaluations were conducted virtually due to the coronavirus disease 2019 pandemic. RESULTS: Cannabidiol was generally well tolerated. Six subjects reported mild to moderate side effects related to study drug and continued on drug; one subject withdrew early due to moderate side effects. No seizures were reported. Significant improvements in SWS neuroscore, patient-reported QOL, anxiety and emotional regulation, and report of bimanual ability use were noted. Migraine QOL scores were high at baseline in these subjects, and remained high. Neuropsychologic and other QOL and motor outcomes remained stable, with some within-subject improvements noted. CONCLUSIONS: Further studies are needed to determine whether Epidiolex can improve quality of life and be beneficial for neurological, anxiety, and motor impairments in SWS independent of seizure control. Large multicentered studies are needed to extend these preliminary findings.


Subject(s)
COVID-19 , Cannabidiol , Sturge-Weber Syndrome , Humans , Cannabidiol/pharmacology , Cannabidiol/therapeutic use , Cognition , Quality of Life , Sturge-Weber Syndrome/complications , Sturge-Weber Syndrome/drug therapy , Sturge-Weber Syndrome/diagnosis
5.
Stroke ; 53(12): 3769-3779, 2022 12.
Article in English | MEDLINE | ID: mdl-36263782

ABSTRACT

Sturge-Weber syndrome (SWS) is a rare, noninherited neurovascular disorder characterized by abnormal vasculature in the brain, skin, and eye. Patients with SWS characteristically have facial capillary malformation, also known as port-wine birthmark, a leptomeningeal vascular malformation seen on contrast-enhanced magnetic resonance imaging images, abnormal blood vessels in the eye, and glaucoma. Patients with SWS have impaired perfusion to the brain and are at high risk of venous stroke and stroke-like episodes, seizures, and both motor and cognitive difficulties. While the activating R183Q GNAQ somatic mutation is the most common somatic mutation underlying SWS, recent research also implicates that GNA11 and GNB2 somatic mutations are related to SWS. Recent retrospective studies suggest the use of low-dose aspirin and vitamin D in treatment for SWS and prospective drug trials have supported the usefulness of cannabidiol and Sirolimus. Presymptomatic treatment with low-dose aspirin and antiepileptic drugs shows promising results in delaying seizure onset in some patients. This review focuses on the latest progress in the field of research for Sturge-Weber syndrome and highlights directions for future research.


Subject(s)
Stroke , Sturge-Weber Syndrome , Humans , Sturge-Weber Syndrome/genetics , Sturge-Weber Syndrome/pathology , Sturge-Weber Syndrome/therapy , Seizures , Brain/diagnostic imaging , Brain/pathology , Stroke/pathology , Aspirin
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