RESUMEN
PURPOSE: To explore perceptions of community dwelling caregivers of preschool-aged children regarding the influence of social determinants of health (SDOH) on children's school readiness. Parents' perspectives regarding solutions to enhance school readiness in preschool-aged children are also explored. METHODS: This study employed a qualitative, descriptive design and a community based participatory research (CBPR) approach. An academic institution collaborated with parents, teachers, and administrators at a community-based preschool learning center. Ten young-adult to middle-aged mothers and caregivers attended two separate focus groups and completed open-ended questionnaires. Inductive and deductive thematic analysis of text were employed. FINDINGS: Three themes emerged 1) Families described the vast lack of appropriate community resources and inability to access those resources that are available to prepare their children for school 2). Family members need help processing information about social resources 3) Community, individual and systemic level solutions to enhance school readiness. CONCLUSIONS: Academic-Community partnerships provide an opportunity to (1) identify solutions to remove systemic barriers that impede children's readiness for school, and (2) design interventions to support families through that process. Interventions to enhance school readiness should be family-focused and can be informed by understanding the influence of SDOH during the planning stages. SDOH create barriers and prevent parents from prioritizing their children's school, health-care, and developmental needs. PRACTICE IMPLICATIONS: Interventions to enhance school readiness should be family-based and can be informed by understanding the influence of SDOH during the planning stages. Social advocacy is also needed to enhance the ability of parents to enhance their children's school readiness.
Asunto(s)
Padres , Determinantes Sociales de la Salud , Niño , Adulto , Persona de Mediana Edad , Femenino , Preescolar , Humanos , Instituciones Académicas , Madres , Encuestas y CuestionariosRESUMEN
BACKGROUND: Progressive supranuclear palsy (PSP) causes major disability, shortens life, and as yet has no disease-modifying and little symptomatic treatment. A convenient prognostic tool is needed to assist patients, families, and clinicians in planning care. OBJECTIVES: We calculated times to acquisition of certain disease milestones and death. METHODS: We followed a cohort of 417 patients with PSP-Richardson syndrome from 1995 to 2016, applying the Progressive Supranuclear Palsy Rating Scale (PSPRS) at each visit. We generated median times to acquisition of 13 milestones using the input variables of sex, onset age, rate of disease progression from motor symptom onset to initial visit, and PSPRS score at the baseline. Of the outcome milestones, 5 were stages of a new, provisional PSP staging system. The other 8 milestones comprised death and disabling levels of cognitive loss, gaze palsy, dysarthria, dysphagia, and gait/balance impairment. RESULTS: We derived median times to milestones, with 25th and 75th percentiles and 95% confidence intervals of the median for baseline PSPRS scores from 25 to 65 (scale range, 0-100). Sex and initial progression velocity significantly influenced the death milestone, but not most of the others. Median time to death ranged from 4.8 years for a man with PSPRS score of 25 and a slow progression velocity from onset to initial visit of 0.51 PSPRS points/month to 1.8 years for a woman with PSPRS 65 and rapid initial velocity of 2.25 points/month. CONCLUSIONS: We have created a convenient, inexpensive, noninvasive reference for counseling patients with PSP-Richardson syndrome on approximate time to encountering 13 life-altering disease milestones.