Parent/Guardian Experiences With the Healthcare System and Community Supports for Pediatric Asthma Management.
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ABSTRACT:
SUBMITTER: Rolke LJ
PROVIDER: S-EPMC9019383 | biostudies-literature | 2022
REPOSITORIES: biostudies-literature
Publications
Parent/Guardian Experiences With the Healthcare System and Community Supports for Pediatric Asthma Management.
Rolke Laura J LJ Griffin Sarah F SF Hamilton Joel J Mayo Rachel R Williams Joel E JE Rennert Lior L Sease Kerry K KK
Journal of patient experience 20220418
Determinants of pediatric asthma management include child, family, healthcare, and community factors. The purpose of this study is to investigate how parents/guardians are impacted by and act on these factors to aid in their child's asthma self-management. Interviews were conducted in Fall 2020 with 12 female parents/guardians of Black/African American children who participated in a community paramedic pilot study with their child in South Carolina. Children in the initial study had an asthma di ...[more]
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Project description:BackgroundElectronic medication monitoring (EMM) is a digital tool that can be used for tracking daily medication use. Previous studies of EMM in asthma management have been conducted in adults or have examined pediatric interventions that use EMM for less than 1 year. To understand how to improve EMM-enhanced interventions, it is necessary to explore the experiences of parents of children with asthma, recruited from outpatient practices, who completed a 12-month intervention trial.ObjectiveThe objective of our study was to use qualitative inquiry to answer the following questions: (1) how did using an EMM-enhanced intervention change parents'/caregivers' experiences of managing their child's asthma, and (2) what do parents recommend for improving the intervention in the future?MethodsParents were recruited from the intervention arm of a multicomponent health intervention enhanced by Bluetooth-enabled sensors placed on inhaler medications. Semistructured interviews were conducted with 20 parents of children aged 4-12 years with asthma. Interviews were audio-recorded, transcribed, and inductively analyzed using a constant comparative approach.ResultsInterview participants reflected an even mix of publicly and privately insured children and a diverse racial-ethnic demographic. Parents discussed 6 key themes related to their experience with the EMM-enhanced intervention for the management of their child's asthma: (1) compatibility with the family's lifestyle, (2) impact on asthma management, (3) impact on the child's health, (4) emotional impact of the intervention, (5) child's engagement in asthma management with the intervention, and (6) recommendations for future intervention design. Overall, parents reported that the 12-month EMM intervention was compatible with their daily lives, positively influenced their preventive and acute asthma management, and promoted their child's engagement in their own asthma management. While parents found the intervention acceptable and generally favorable, some parents identified compatibility issues for families with multiple caregivers and frustration when the technology malfunctioned.ConclusionsParents generally viewed the intervention as a positive influence on the management of their child's asthma. However, our study also highlighted technology challenges related to having multiple caregivers, which will need to be addressed in future iterations for families. Attention must be paid to the needs of parents from low socioeconomic households, who may have more limited access to reliable internet or depend on other relatives for childcare. Understanding these family factors will help refine how a digital tool can be adopted into daily disease management of pediatric asthma.
| S-EPMC8105758 | biostudies-literature
Project description:Community-level approaches for pediatric asthma management rely on locally collected information derived primarily from two sources: claims records and school-based surveys. We combined claims and school-based surveillance data, and examined the asthma-related risk patterns among adolescent students. Symptom data collected from school-based asthma surveys conducted in Oakland, CA were used for case identification and determination of severity levels for students (high and low). Survey data were matched to Medicaid claims data for all asthma-related health care encounters for the year prior to the survey. We then employed recursive partitioning to develop classification trees that identified patterns of demographics and healthcare utilization associated with severity. A total of 561 students had complete matched data; 86.1% were classified as high-severity, and 13.9% as low-severity asthma. The classification tree consisted of eight subsets: three indicating high severity and five indicating low severity. The risk subsets highlighted varying combinations of non-specific demographic and socioeconomic predictors of asthma prevalence, morbidity and severity. For example, the subset with the highest class-prior probability (92.1%) predicted high-severity asthma and consisted of students without prescribed rescue medication, but with at least one in-clinic nebulizer treatment. The predictive accuracy of the tree-based model was approximately 66.7%, with an estimated 91.1% of high-severity cases and 42.3% of low-severity cases correctly predicted. Our analysis draws on the strengths of two complementary datasets to provide community-level information on children with asthma, and demonstrates the utility of recursive partitioning methods to explore a combination of features that convey asthma severity.
| S-EPMC5984210 | biostudies-literature
Project description:IntroductionPediatric asthma exacerbations account for >1.8 million emergency department (ED) visits annually. Asthma guidelines are intended to guide time-dependent treatment decisions that improve clinical outcomes; however, guideline adherence is inadequate. We examined whether an automatic disease detection system increases clinicians' use of paper-based guidelines and decreases time to a disposition decision.MethodsWe evaluated a computerized asthma detection system that triggered NHLBI-adopted, evidence-based practice to improve care in an urban, tertiary care pediatric ED in a 3-month (7/09-9/09) prospective, randomized controlled trial. A probabilistic system screened all ED patients for acute asthma. For intervention patients, the system generated the asthma protocol at triage for intervention patients to guide early treatment initiation, while clinicians followed standard processes for control patients. The primary outcome measures included time to patient disposition.ResultsThe system identified 1100 patients with asthma exacerbations, of which 704 had a final asthma diagnosis determined by a physician-established reference standard. The positive predictive value for the probabilistic system was 65%. The median time to disposition decision did not differ among the intervention (289 min; IQR = (184, 375)) and control group (288 min; IQR = (185, 375)) (p=0.21). The hospital admission rate was unchanged between intervention (37%) and control groups (35%) (p = 0.545). ED length of stay did not differ among the intervention (331 min; IQR = (226, 581)) and control group (331 min; IQR = (222, 516)) (p = 0.568).ConclusionDespite a high level of support from the ED leadership and staff, a focused education effort, and implementation of an automated disease detection, the use of the paper-based asthma protocol remained low and time to patient disposition did not change.
| S-EPMC3646328 | biostudies-literature
Project description:BACKGROUND:Uncontrolled asthma poses substantial negative personal and health system impacts. Web-based technologies, including smartphones, are novel means to enable evidence-based care and improve patient outcomes. OBJECTIVE:The aim of this study was to design, develop, and assess the utilization of an asthma collaborative self-management (CSM) platform (breathe) using content based on international evidence-based clinical guidelines. METHODS:We designed and developed breathe as a Web-based mobile health (mHealth) platform accessible on smartphones, tablets, or desktop with user-centered design methods and International Organization for Standardization-certified quality development processes. Moreover, breathe was envisioned as a multifunctional, CSM mHealth platform, with content based on international clinical practice guidelines and compliant with national privacy and security specifications. The system enabled CSM (patient, provider, and breathe) and self-monitoring of asthma patients through (1) assessment of asthma control, (2) real-time access to a dynamic asthma action plan, (3) access to real-time environmental conditions, and (4) risk-reduction messaging. The data collection protocol collected user data for 12 months, with clinic visits at baseline and 6 and 12 months. Utilization outcomes included user interactions with the platform, user impressions, self-reported medication use, asthma symptom profile, reported peak flow measurement, and the delivery and impact of email reminders. RESULTS:We enrolled 138 patients with a mean age of 45.3 years to receive the breathe intervention. Majority were female (100/138, 72.5%), had a smartphone (92/138, 66.7%), and had a mean Asthma Control Test score of 18.3 (SD 4.9). A majority reported that breathe helped in the management of their asthma. Moreover, breathe scored 71.1 (SD 18.9) on the System Usability Scale. Overall, 123 patients had complete usage analytics datasets. The platform sent 7.96 reminder emails per patient per week (pppw), patients accessed breathe 3.08 times, journaled symptoms 2.56 times, reported medication usage 0.30 times, and reported peak flow measurements 0.92 times pppw. Furthermore, breathe calculated patients' action plan zone of control 2.72 times pppw, with patients being in the green (well-controlled) zone in 47.71% (8300/17,396) of the total calculations. Usage analysis showed that 67.5% (83/123) of the participants used the app at week 4 and only 57.7% (71/123) by week 45. Physician visits, email reminders, and aged 50 years and above were associated with higher utilization. CONCLUSIONS:Individuals with asthma reported good usability and high satisfaction levels, reacted to breathe notifications, and had confidence in the platform's assessment of asthma control. Strong utilization was seen at the intervention's initiation, followed by a rapid reduction in use. Patient reminders, physician visits, and being aged 50 years and above were associated with higher utilization. TRIAL REGISTRATION:ClinicalTrials.gov NCT01964469; https://clinicaltrials.gov/ct2/show/NCT01964469.
| S-EPMC6369424 | biostudies-literature
Project description:ObjectiveMobile health technology offers promise for reducing disparities in pediatric asthma care and outcomes by helping parents more effectively communicate with their children's primary care providers and manage their children's asthma. This study tested the impact of a text messaging program on emergency department utilization and asthma morbidity.MethodsA randomized controlled trial enrolled 221 parents of Medicaid-insured children visiting the emergency departments of 2 urban children's hospitals in the Pacific Northwest for an asthma-related concern between September 2015 and February 2019. Standardized surveys were administered to parents at baseline and 12 months later to assess the primary outcomes of emergency department utilization and morbidity as well as primary care utilization, parent communication self-efficacy, and asthma self-management knowledge. The intervention group received brief in-person education on partnering with primary care providers, followed by 3 months of educational text messages.ResultsParticipants were mostly female, English speakers, of minority race and ethnicity, and living below 200% of the federal poverty level. Negative binomial and linear regressions indicated no significant group differences in annual number of emergency department visits, morbidity, parent communication self-efficacy, or asthma self-management knowledge at 12 months' follow-up, adjusting for baseline covariates. Average annual rate of primary care visits for asthma was 35% higher in the intervention group compared to control group at follow-up (95% confidence interval 1.03-1.76, P = .03).ConclusionsThis parent-focused text message intervention did not impact emergency department utilization or asthma morbidity; however, results suggest its potential for enhancing use of primary care for management of pediatric chronic conditions.
| S-EPMC10650351 | biostudies-literature
Project description:A high prevalence of suboptimal asthma control is attributable to known evidence-practice gaps. We developed a computerised clinical decision support system (the Electronic Asthma Management System (eAMS)) to address major care gaps and sought to measure its impact on care in adults with asthma.This was a 2-year interrupted time-series study of usual care (year 1) versus eAMS (year 2) at three Canadian primary care sites. We included asthma patients aged ≥16 years receiving an asthma medication within the last 12 months. The eAMS consisted of a touch tablet patient questionnaire completed in the waiting room, with real-time data processing producing electronic medical record-integrated clinician decision support.Action plan delivery (primary outcome) improved from zero out of 412 (0%) to 79 out of 443 (17.8%) eligible patients (absolute increase 0.18 (95% CI 0.14-0.22)). Time-series analysis indicated a 30.5% increase in physician visits with action plan delivery with the intervention (p<0.0001). Assessment of asthma control level increased from 173 out of 3497 (4.9%) to 849 out of 3062 (27.7%) eligible visits (adjusted OR 8.62 (95% CI 5.14-12.45)). Clinicians escalated controller therapy in 108 out of 3422 (3.2%) baseline visits versus 126 out of 3240 (3.9%) intervention visits (p=0.12). At baseline, a short-acting β-agonist alone was added in 62 visits and a controller added in 54 visits; with the intervention, this occurred in 33 and 229 visits, respectively (p<0.001).The eAMS improved asthma quality of care in real-world primary care settings. Strategies to further increase clinician uptake and a randomised controlled trial to assess impact on patient outcomes are now required.
| S-EPMC6482383 | biostudies-literature
Project description:PurposeAs stated in the Global Initiative for Asthma, there are still some asthmatic patients who have not achieved asthma control. Mobile is a useful tool for asthma management. We aimed to compare the advantages of mobile management with traditional management in improving adherence and control of asthma.MethodsIn this prospective, multicentre, randomized, controlled and parallel-group study, we enrolled patients with poor adherence and uncontrolled asthma at 32 hospitals in 28 provinces in China. Patients were randomly assigned to the mobile management or traditional management groups for 12 months. The primary endpoint was the proportion of patients with good adherence (Medication Adherence Report Scale for Asthma [MARS-A] score ≥ 45) for 6 months. This study is registered at ClinicalTrials.gov (NCT02917174).ResultsBetween April 2017 and April 2018, 923 patients were eligible for randomization (mobile group, n = 461; traditional group, n = 462). Dropout was 84 (18.2%) in the mobile management group and 113 (24.4%) patients in the traditional management group. The proportion of patients with good adherence was significantly higher in the mobile management group than in the traditional management group (66.0% vs. 58.99%, P = 0.048). The mobile management group showed higher mean MARS-A score (at 1, 6, 9, and 12 months) and asthma control test scores (at 6 and 9 months), and lower total lost rate to follow-up within 12 months than the traditional management group.ConclusionsMobile asthma management can improve adherence and asthma control compared to traditional management.Trial registrationClinicalTrials.gov Identifier: NCT02917174.
| S-EPMC8724822 | biostudies-literature
Project description:BackgroundCOVID-19 disproportionately affects families of low socioeconomic status and may worsen health disparities that existed prior to the pandemic. Asthma is a common chronic disease in children exacerbated by environmental exposures.MethodsA cross-sectional survey was conducted to understand the impact of the initial stage of the pandemic on environmental and social conditions, along with access to care for children with asthma in New York City (NYC). Participants were recruited from a community-based organization in East Harlem and a nearby academic Pediatric Pulmonary clinic and categorized as having either public or private insurance (n = 51).ResultsFactors significantly associated with public compared to private insurance respectively were: increased reports of indoor asthma triggers (cockroach 76% vs 23%; mold 40% vs 12%), reduced income (72% vs 27%), and housing insecurity (32% vs 0%). Participants with public insurance were more likely to experience conditions less conducive to social distancing compared to respondents with private insurance, such as remaining in NYC (92% vs 38%) and using public transportation (44% vs 4%); families with private insurance also had greater access to remote work (81% vs 8%). Families with public insurance were significantly more likely to test positive for SARS-CoV-2 (48% vs 15%) but less likely to have gotten tested (76% vs 100%). Families with public insurance also reported greater challenges accessing office medical care and less access to telehealth, although not statistically significant (44% vs 19%; 68% vs 85%, respectively).ConclusionsFindings highlight disproportionate burdens of the pandemic, and how these disparities affect children with asthma in urban environments.
| S-EPMC9868511 | biostudies-literature
Project description:BackgroundParent empowerment is often an expressed goal in clinical pediatrics and in pediatric research, but the antecedents and consequences of parent empowerment are not well established.ObjectiveThe objective of this systematic review was to synthesize potential antecedents and consequences of parent empowerment in healthcare settings.Eligibility criteriaThe inclusion criteria were (1) studies with results about parent empowerment in the context of children's healthcare or healthcare providers; and (2) qualitative studies, observational studies, and systematic reviews of such studies.Information sourcesWe searched the databases of PubMed, Web of Science, and Google Scholar (2006-2017) and reference lists.Included studiesForty-four articles met the inclusion criteria.Synthesis of resultsWe identified six themes within consequences of empowerment: increased parent involvement in daily care, improved symptom management, enhanced informational needs and tools, increased involvement in care decisions, increased advocacy for child, and engagement in empowering others. Six themes summarizing antecedents of empowerment also emerged: parent-provider relationships, processes of care, experiences with medical care, experiences with community services, receiving informational/emotional support, and building personal capacity and narrative. We synthesized these findings into a conceptual model to guide future intervention development and evaluation.Strengths and limitations of evidenceNon-English articles were excluded.InterpretationParent empowerment may enhance parent involvement in daily care and care decisions, improve child symptoms, enhance informational needs and skills, and increase advocacy and altruistic behaviors. Parent empowerment may be promoted by the parent-provider relationship and care processes, finding the right fit of medical and community services, and attention to the cognitive and emotional needs of parents.Clinical registration noPROSPERO 2017:CRD42017059478.
| S-EPMC6397702 | biostudies-literature
Project description:ObjectiveCompassion has long been considered a cornerstone of quality pediatric healthcare by patients, parents, healthcare providers and systems leaders. However, little dedicated research on the nature, components and delivery of compassion in pediatric settings has been conducted. This study aimed to define and develop a patient, parent, and healthcare provider informed empirical model of compassion in pediatric oncology in order to begin to delineate the key qualities, skills and behaviors of compassion within pediatric healthcare.MethodsData was collected via semi-structured interviews with pediatric oncology patients (n = 33), parents (n = 16) and healthcare providers (n = 17) from 4 Canadian academic medical centers and was analyzed in accordance with Straussian Grounded Theory.ResultsFour domains and 13 related themes were identified, generating the Pediatric Compassion Model, that depicts the dimensions of compassion and their relationship to one another. A collective definition of compassion was generated-a beneficent response that seeks to address the suffering and needs of a person and their family through relational understanding, shared humanity, and action.ConclusionsA patient, parent, and healthcare provider informed empirical pediatric model of compassion was generated from this study providing insight into compassion from both those who experience it and those who express it. Future research on compassion in pediatric oncology and healthcare should focus on barriers and facilitators of compassion, measure development, and intervention research aimed at equipping healthcare providers and system leaders with tools and training aimed at improving it.
| S-EPMC8518637 | biostudies-literature