School readiness and social determinants of health: A collaboration with community teachers and parents.

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.

Serial Neurologic Assessment in Pediatrics (SNAP): A New Tool for Bedside Neurologic Assessment of Critically Ill Children.

OBJECTIVES: We developed a tool, Serial Neurologic Assessment in Pediatrics, to screen for neurologic changes in patients, including those who are intubated, are sedated, and/or have developmental disabilities. Our aims were to: 1) determine protocol adherence when performing Serial Neurologic Assessment in Pediatrics, 2) determine the interrater reliability between nurses, and 3) assess the feasibility and acceptability of using Serial Neurologic Assessment in Pediatrics compared with the Glasgow Coma Scale. DESIGN: Mixed-methods, observational cohort. SETTING: Pediatric and neonatal ICUs. SUBJECTS: Critical care nurses and patients. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Serial Neurologic Assessment in Pediatrics assesses Mental Status, Cranial Nerves, Communication, and Motor Function, with scales for children less than 6 months, greater than or equal to 6 months to less than 2 years, and greater than or equal to 2 years old. We assessed protocol adherence with standardized observations. We assessed the interrater reliability of independent Serial Neurologic Assessment in Pediatrics assessments between pairs of trained nurses by percent- and bias- adjusted kappa and percent agreement. Semistructured interviews with nurses evaluated acceptability and feasibility after nurses used Serial Neurologic Assessment in Pediatrics concurrently with Glasgow Coma Scale during routine care. Ninety-eight percent of nurses (43/44) had 100% protocol adherence on the standardized checklist. Forty-three nurses performed 387 paired Serial Neurologic Assessment in Pediatrics assessments (149 < 6 mo; 91 ≥ 6 mo to < 2 yr, and 147 ≥ 2 yr) on 299 patients. Interrater reliability was substantial to near-perfect across all components for each age-based Serial Neurologic Assessment in Pediatrics scale. Percent agreement was independent of developmental disabilities for all Serial Neurologic Assessment in Pediatrics components except Mental Status and lower extremity Motor Function for patients deemed "Able to Participate" with the assessment. Nurses reported that they felt Serial Neurologic Assessment in Pediatrics, compared with Glasgow Coma Scale, was easier to use and clearer in describing the neurologic status of patients who were intubated, were sedated, and/or had developmental disabilities. About 92% of nurses preferred to use Serial Neurologic Assessment in Pediatrics over Glasgow Coma Scale. CONCLUSIONS: When used by critical care nurses, Serial Neurologic Assessment in Pediatrics has excellent protocol adherence, substantial to near-perfect interrater reliability, and is feasible to implement. Further work will determine the sensitivity and specificity for detecting clinically meaningful neurologic decline.

Patients' experiences with Behçet's syndrome: structured interviews among patients with different types of organ involvement.

OBJECTIVES: Behçet's syndrome (BS) is a multisystem variable-vessel vasculitis with significant life impact. The aim of this study was to explore the perspectives of patients with BS with different types of organ involvement. METHODS: Semi-structured qualitative interviews were conducted with 20 patients with BS with different types of organ involvement. Interviews were audio-recorded, transcribed, and translated into English. A Grounded Theory approach was employed in thematic analysis of translated interviews. RESULTS: Interviews with participants yielded four themes, including symptoms (skin problems, pain, vision problems, fatigue/sleep disturbances, and gastrointestinal/weight loss), impact on function (impact on speech and vision, mobility, energy for tasks, adaptations, and self-care), psychological impact (emotions and emotional management techniques), and social impact (ability to socialize generally and impact on familial relationships). CONCLUSIONS: Patients with BS identified several domains, including physical functioning, psychological state, and social identity that are significantly modulated by the symptoms of BS. Those are inter-related with physical symptoms, reflecting the multi-system character of BS, and impair patients' function impacting on psychological and social identities. This work advances an understanding of BS, and will be useful in developing patient-oriented outcome measures for use in studying BS.

Traumatic brain injury education for adult patients and families: a scoping review.

Traumatic brain injury (TBI) is increasingly viewed as a chronic condition, bringing long-term needs for patient and caregiver knowledge pertaining to symptom and problem management over time. In light of these needs, we performed a scoping review of the literature on brain injury education provided to adult patients and/ or family members affected by TBI. Objectives were to describe the types of educational interventions that have been developed; to review the effects of these interventions; and to determine gaps that might be filled by future research efforts. Of 88 articles meeting search criteria and subjected to data extraction, 34 concerned education about mild TBI and 54, moderate to severe TBI. Most mild TBI articles focused on education in the Emergency Room, while most moderate/ severe TBI education was directed toward family members/ caregivers and was frequently combined with other treatment components, making the effects of education difficult to discern. Only 1 article incorporated elements of self-management training (SMT), a model proved effective in other chronic health conditions. We recommend further exploration of SMT principles in long-term TBI care, as well as more precise definition of treatment components in all patient and family interventions, so that the specific effects of education and other treatment elements may be more readily evaluated.

A systematic review of how spinal cord injury impacts families.

PURPOSE/OBJECTIVE: This systematic review synthesizes the existing literature on the impact of spinal cord injury (SCI) on families, including parenting, marital relations, and caregivers' psychological adjustment. RESEARCH METHOD/DESIGN: Seven databases were searched for relevant peer-reviewed studies. Dissertations, chapters, editorials, and review articles were excluded. Sixty-six studies that examined SCI's impact on caregivers and families were included. RESULTS: The review included 55 quantitative studies, 10 qualitative studies, and one study that utilized both methodologies. Among the quantitative psychosocial adjustment studies, as well as the qualitative studies, lack of social support was associated with an increased sense of burden, stress, depression, anxiety, and poorer physical health in caregivers. In the family relationship studies (n = 7), few significant differences were found in family functioning. Marital relationship studies (n = 12) frequently examined intimacy (sex, partner affirmations, and emotional support) as an important facet for determining positive or negative outcomes when one partner had SCI. However, divorce rates appeared to increase over time postinjury. Though few studies investigated caregiver needs and interventions (n = 5), needs for social support and information were identified, and several interventions (e.g., family education, more social support, and problem-solving training) were beneficial for promoting caregivers' psychosocial adjustment. CONCLUSIONS: SCI significantly impacts caregivers' sense of burden and psychological distress, with major implications for family functioning and caregivers' physical, mental, and social health. These issues occurred internationally and endured over time. Findings indicated the need for focused interventions to support caregivers' psychosocial adjustment after SCI. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

A Qualitative Study of Facilitators and Barriers to Self-Management of CKD.

INTRODUCTION: Self-management is an integral component of CKD treatment. Nevertheless, many patients with CKD do not adequately engage in self-management behaviors, and little is known on the underlying reasons. We aimed to identify and describe the factors that influence self-management behaviors from the perspective of adults with CKD. METHODS: We conducted 30 semistructured interviews with adults with CKD stage 3 or 4 from an academic nephrology clinic in the United States. Interviews were analyzed thematically. RESULTS: The following are the 3 key phases of CKD self-management behavior engagement identified: (i) prioritization, (ii) performance, and (iii) maintenance. Prioritization was favorably influenced by optimism, stress management, and patient-provider communication and hampered by fatalism and competing priorities. Behavior performance was facilitated by motivating factors, self-efficacy, and support resources and impeded by comorbid conditions that caused treatment burden and adverse symptoms. Behavior maintenance relied on effective routines, influenced by similar factors as behavior performance, and reinforced by memory aids, goal setting, self-monitoring, and proactive preparation. CONCLUSION: We identified modifiable facilitators and barriers that influence the incorporation of CKD self-management into daily life. Our findings have important implications for the care of patients with CKD by providing a framework for providers to develop effective, tailored approaches to promote self-management engagement.

Persistent Barriers to Colorectal Cancer Screening Completion Amid Centralized Outreach: A Mixed Methods Study.

PURPOSE: To understand patient experiences and persistent barriers to colorectal cancer (CRC) screening amid centralized outreach at urban family medicine practices. APPROACH: Following a pragmatic trial assessing mailed fecal immunochemical test (FIT) outreach, we invited a subset of participants to complete a semi-structured qualitative interview and structured questionnaire. SETTING: Single urban academic healthcare system. PARTICIPANTS: Sixty patients who were eligible and overdue for CRC screening at the time of trial enrollment. METHOD: Using Andersen's Behavioral Model, we developed an interview guide to systematically assess factors shaping screening decisions and FIT uptake. Close-ended responses were analyzed using descriptive statistics. Qualitative data were analyzed using the constant comparative method. RESULTS: Most participants (82%) self-reported that they had ever completed any modality of CRC screening, and nearly half (43%) completed the mailed FIT during the trial. Most patients (60%) preferred FIT to colonoscopy due to its private, convenient, and non-invasive nature; however, persistent barriers related to screening beliefs including fear of test results and cancer treatment still prevented some patients from completing any form of CRC screening. CONCLUSIONS: Mailed FIT can overcome many structural barriers to CRC screening, yet clear communication and follow-up amid centralized outreach are essential. For some patients, tailored outreach or navigation to address screening-related fears or other screening beliefs may be needed to ensure timely completion of CRC screening.

Applying the Haddon matrix conceptual model to guide motor vehicle crash injury research and prevention in Botswana.

INTRODUCTION: Little literature addresses the burden of injury in Botswana, including trauma from motor-vehicle crashes (MVCs). In response, the University of Botswana and the Botswana Ministry of Health and Wellness are collaborating with the University of Pennsylvania to enhance injury and trauma research capacity in Botswana. Here we describe this training program and a research exercise to identify opportunities to prevent, through future research and countermeasures, MVCs specifically in Botswana. METHODS: We initiated a mixed-methods study during a training module during the first two years of the program. The module introduced the Haddon matrix as a conceptual framework, and asked trainees to identify host, vector, and physical/social environment risk factors for MVCs that, if targeted, may lead to primary, secondary, or tertiary prevention. We conducted 10 photovoice elicitation interviews; results were thematically analyzed to further elucidate the context of MVCs in Botswana and potential countermeasures. RESULTS: Our process identified a range of ideas as barriers or facilitators to MVC prevention. The most commonly cited barriers were animals on the road, drunk or reckless driving, poor road quality, lack of road signs/traffic signals to orient drivers, and poor visibility (e.g., no street lighting; poor lighting on vehicles). Regarding primary prevention, participants identified features prior to the crash, across all matrix levels, as influencers of crashes in Botswana. Among these, several human factors (i.e., over-speeding; drunk driving) and environmental factors (i.e., livestock on road) were commonly mentioned as contributors to MVCs, as were cattle gates and traffic calming measures for prevention. CONCLUSION: Results of the Haddon matrix exercise proved useful for training burgeoning Batswana researchers to think conceptually about the occurrence of MVCs in Botswana and think creatively about targeting countermeasures for prevention. The exercise resulted in potential research questions for the trainees to pursue in mentored research of their own.

Racial Differences in Perceptions of Psoriasis Therapies: Implications for Racial Disparities in Psoriasis Treatment.

In the United States, black patients are less likely than white patients to receive biologic treatment for their psoriasis. We conducted a qualitative free-listing study to identify patient-generated factors that may explain this apparent racial disparity in psoriasis treatment by comparing the perceptions of biologics and other psoriasis therapies between white and black adults with psoriasis. Participants included 68 white and black adults with moderate to severe psoriasis who had and had not received biologic treatment. Each participant was asked to list words in response to verbal probes querying five psoriasis treatments: self-injectable biologics, infliximab, methotrexate, apremilast, and phototherapy. Salience scores indicating the relative importance of each word were calculated, and salient words were compared across each race/treatment group. Participants who had experience with biologics generally associated positive words with self-injectable biologics. Among biologic-naïve participants, "apprehension," "side effects," and "immune suppression" were most salient. "Unfamiliar" and "dislike needles" were salient only among black participants who were biologic naïve. Participants were generally unfamiliar with the other psoriasis therapies except phototherapy. Unfamiliarity with biologics, particularly among black, biologic-naïve patients, may partly explain the existing racial disparity in biologic treatment for psoriasis and might stem from lack of exposure to or poor understanding of biologics.