Families\u27 Experiences in the Virtual Hanen More Than Words Program During the COVID-19 Pandemic

Abstract Purpose: The COVID-19 pandemic required most pediatric rehabilitation programs to shift to a virtual delivery format without the benefits of evidence to support this transition. Our study explored families\u27 experiences participating virtually in More Than Words, a program for parents of autistic children, with the goal of generating new evidence to inform both virtual service delivery and program development. Method: Twenty-one families who recently completed a virtual More Than Words program participated in a semistructured interview. The interviews were transcribed and analyzed in NVivo using a top-down deductive approach that referenced a modified Dynamic Knowledge Transfer Capacity model. Results: Six themes capturing families\u27 experiences with different components of virtual service delivery were identified: (a) experiences participating from home, (b) accessing the More Than Words program, (c) delivery methods and program materials, (d) the speech-language pathologist-caregiver relationship, (e) new skills learned, and (f) virtual program engagement. Conclusions: Most participants had a positive experience in the virtual program. Suggested areas for improvement included the time and length of intervention sessions and increasing social connections with other families. Practice considerations related to the importance of childcare during group sessions and having another adult to support the videorecording of parent-child interactions. Clinical implications include suggestions for how clinicians can create a positive virtual experience for families

Formative research methods to understand patient and provider responses to heart attack symptoms

Formative research is often required for program planning, and for reducing uncertainty about generalizability of program effects. This article describes and justifies methods of formative research conducted for the REACT study (Rapid Early Action for Coronary Treatment), a multi-center collaborative randomized community trial aimed at reducing patient delay in seeking care for acute myocardial infarction (AMI). Formative research cast light on the decision-making process of patient and community members in seeking help for AMI, as well as barriers and facilitators of this process. Investigators at all five REACT Field Centers participated in the formative research. The process consisted of: (1) developing a common theoretical framework for the study intervention; (2) conducting a literature review and qualitative research to identify and address gaps in knowledge; and (3) developing a common protocol for the REACT study that accommodated the diversity of the target communities in terms of services, resources, history, and ethnicity. Analysis employed triangulation, defined as an explicit search for heterogeneous data sources to reduce uncertainty about forces at work and opportunities for intervention across settings and populations. Because the collection and interpretation of data went in stages, staff of several REACT Field Centers had independent input to the overall synthesis, then shared and revised the results. Advantages and limitations of this approach are discussed

Patient delay in seeking care for heart attack symptoms: findings from focus groups conducted in five U.S. regions

BACKGROUND: Patient delay in seeking health care for heart attack symptoms is a continuuing problem in the United States. METHODS: Investigators conducted focus groups (N = 34; 207 participants) in major U.S. regions (NE, NW, SE, SW, MW) as formative evaluation to develop a multi-center randomized community trial (the REACT Project). Target groups included adults with previous heart attacks, those at higher risk for heart attack, and bystanders to heart attacks. There were also subgroups reflecting gender and ethnicity (African-American, Hispanic-American, White). FINDINGS: Patients, bystanders, and those at higher risk expected heart attack symptoms to present as often portrayed in the movies, that is, as sharp, crushing chest pain rather than the more common onset of initially ambiguous but gradually increasing discomfort. Patients and those at higher risk also unrealistically judge their personal risk as low, understand little about the benefits of rapid action, are generally unaware of the benefits of using EMS/9-1-1 over alternative transport, and appear to need the permission of health care providers or family to act. Moreover, participants reported rarely discussing heart attack symptoms and appropriate responses in advance with health care providers, spouses, or family members. Women often described heart attack as a male problem, an important aspect of their underestimation of personal risk. African-American participants were more likely to describe negative feelings about EMS/9-1-1, particularly whether they would be transported to their hospital of choice. CONCLUSIONS: Interventions to reduce patient delay need to address expectations about heart attack symptoms, educate about benefits and appropriate actions, and provide legitimacy for taking specific health care-seeking actions. In addition, strategy development must emphasize the role of health care providers in legitimizing the need and importance of taking rapid action in the first place

IL-17A is increased in the serum and in spinal cord CD8 and mast cells of ALS patients

Abstract The contribution of inflammation to neurodegenerative diseases is increasingly recognized, but the role of inflammation in sporadic amyotrophic lateral sclerosis (sALS) is not well understood and no animal model is available. We used enzyme-linked immunosorbent assays (ELISAs) to measure the cytokine interleukin-17A (IL-17A) in the serum of ALS patients (n = 32; 28 sporadic ALS (sALS) and 4 familial ALS (fALS)) and control subjects (n = 14; 10 healthy subjects and 4 with autoimmune disorders). IL-17A serum concentrations were 5767 ± 2700 pg/ml (mean ± SEM) in sALS patients and 937 ± 927 pg/ml in fALS patients in comparison to 7 ± 2 pg/ml in control subjects without autoimmune disorders (p = 0.008 ALS patients vs. control subjects by Mann-Whitney test). Sixty-four percent of patients and no control subjects had IL-17A serum concentrations > 50 pg/ml (p = 0.003 ALS patients vs. healthy subjects by Fisher's exact test). The spinal cords of sALS (n = 8), but not control subjects (n = 4), were infiltrated by interleukin-1β- (IL-1β-), and tumor necrosis factor-α-positive macrophages (co-localizing with neurons), IL-17A-positive CD8 cells, and IL-17A-positive mast cells. Mononuclear cells treated with aggregated forms of wild type superoxide dismutase-1 (SOD-1) showed induction of the cytokines IL-1β, interleukin-6 (IL-6), and interleukin-23 (IL-23) that may be responsible for induction of IL-17A. In a microarray analysis of 28,869 genes, stimulation of peripheral blood mononuclear cells by mutant superoxide dismutase-1 induced four-fold higher transcripts of interleukin-1α (IL-1α), IL-6, CCL20, matrix metallopeptidase 1, and tissue factor pathway inhibitor 2 in mononuclear cells of patients as compared to controls, whereas the anti-inflammatory cytokine interleukin-10 (IL-10) was increased in mononuclear cells of control subjects. Aggregated wild type SOD-1 in sALS neurons could induce in mononuclear cells the cytokines inducing chronic inflammation in sALS spinal cord, in particular IL-6 and IL-17A, damaging neurons. Immune modulation of chronic inflammation may be a new approach to sALS