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1.
Objectives: The purpose of this study was to: (a) describe the types of medication problems/concerns youth with asthma and their caregivers reported and (b) examine the association between sociodemographic characteristics and youth and caregiver reported medication problems/concerns. Methods: English- and Spanish-speaking youth ages 11–17 with persistent asthma were recruited at four pediatric clinics. Youth were interviewed and caregivers completed questionnaires about reported asthma medication concerns/problems. Multiple logistic regression was used to analyze the data. Results: Three hundred and fifty-nine youth were recruited. Eighty percent of youth and 70% of caregivers reported one or more problems in using asthma medications. The most commonly reported problems by youth were: (a) hard to remember when to take the asthma medication (54%) and (b) hard to use asthma medication at school (34%). Younger children were significantly more likely to report difficulty in understanding their asthma medication's directions and difficulty reading the print on the medication's package. Caregivers’ top-reported problem was that it is hard for their child to remember to take their asthma medications (49%). Caregivers without Medicaid were significantly more likely to express difficulty paying for their child's asthma medications. Conclusions: Difficulty remembering to take asthma medication was a significant problem for youth and their caregivers. Providers should work with youth and their caregivers to identify asthma medication problems and discuss strategies to address those problems.  相似文献   

2.
Background: Few tools exist to facilitate recommended self-management support for children with asthma. We sought to examine the feasibility, acceptance and preliminary results of a novel worksheet designed to provide such support for children and their caregivers presenting for asthma care. Methods: A 12-topic asthma worksheet was modeled on currently available self-management tools and based on the behavior change theory and motivational interviewing techniques. Children 1–18 years old with asthma and their caregivers were recruited from an allergy clinic and an inpatient ward to pilot test the worksheet by choosing three topics, generating self-management goals for each topic and assessing their self-efficacy for behavior change. Physician documentation of the visit was reviewed for comparison. Telephone follow up of self-management goals occurred 1 week after the visit. Results: Forty-one of 46 eligible subjects agreed to participate (89%). Average completion time was 5:47?min (range 3:30–13:00). Most of them (98%) found the worksheet easy to understand, with minor modifications suggested. Topics most commonly selected were distinct from topics documented by physicians in the subsequent encounter (p?<?0.01). Subjects generated 121 total self-management goals; 93% were at least “moderately confident” they could meet the goals. All 15 subjects reached by phone (37%) had achieved at least one goal at follow-up. Conclusions: A worksheet designed for self-management support of children is brief, feasible and acceptable in the clinical environment. This tool captures unique patient-centered preferences for behavior change, and shows promise for facilitating goal-setting and self-management education in the routine clinical care of pediatric asthma.  相似文献   

3.
Objective: Asthma action plans (AAPs) provide asthma management instructions to families; however, AAPs typically are written at a 7th–9th grade reading level, making them less useful in lower literacy families. There is a need to develop simpler AAP formats and content to optimize their utility across all families, including those who are rural and may be at a risk for literacy concerns. Because using pictures can simplify and enhance health education, our study's aim was to develop a pictorial AAP through a series of focus groups with key stakeholders – youth with asthma, caregivers, and physicians. Methods: Fourteen caregiver/youth dyads and four physicians participated in separate focus groups where their preferences for pictorial AAP structure and content were obtained. Focus groups were audio recorded, transcribed, coded with ATLAS.ti, and analyzed for themes. Results: Youth and their caregivers prefer that the AAPs include simple, cartoon-like pictures customized to the patient. Physicians emphasized AAP's capability to display pictures of controller medication given its importance in preventing asthma exacerbations. A stoplight format, currently used in most written AAPs, received positive reviews. Specific suggestions for pictures showing symptoms, medications, and how to take medication were suggested. Words and short phrases accompanying the pictures were thought to add clarity. Conclusions: Key stakeholders viewed pictorial AAPs as positive and potentially effective alternatives to standard written AAPs. It is expected that low literacy youth and caregivers would more easily understand a pictorial AAP presentation, which should facilitate better medication adherence and asthma outcomes in these children.  相似文献   

4.
Objective: The purpose of this study is to report how photovoice was used to (1) ascertain Mexican-American caregiver perspectives about asthma management, and (2) engage caregivers in dissemination. Methods: Eleven Mexican-American caregivers of children with asthma were recruited and given cameras to photograph what helped or hindered their ability to care for their child. Participants prioritized which images to share, discussed the images with the group, and wrote accompanying titles and captions in four photovoice sessions. Sessions were in Spanish and occurred in a community setting. Participants presented their work to peers and community members. Identified issues were subsequently categorized by investigators according to the four components of asthma care. Results: Participants prioritized 32 phototexts, the majority of which (n?=?20, 63%) reflected activities associated with environmental control. Caregivers highlighted asthma triggers, and suggested ways to maintain indoor air quality (IAQ) through home cleaning. The need for policies that enforce smoking bans in shared housing and public places was identified as an important strategy to improve outdoor air quality. “Education for a Partnership in Asthma Care” was represented in six (19%) phototexts. Five phototexts (16%) represented “Assessment and Monitoring”. Only one phototext (3.13%) primarily represented “Medications”. Conclusions: Results support the need for active partnerships between caregivers and providers. Photographs can serve as the basis for reciprocal education between patient and provider, especially in the area of environmental triggers. Provider visits should include assessment, strategies and resources to maximize IAQ. Photovoice facilitates caregivers’ ability to advocate for improved asthma management and health equity.  相似文献   

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6.
Objective: Incorrect Metered-Dose Inhaler (MDI)-spacer technique can result in decreased drug delivery to distal airways and poor asthma outcomes. There is lack of research to examine whether the caregivers utilize proper technique when applying an MDI-spacer delivery system for young minority children with persistent asthma in the United States. The objective of this study was to evaluate MDI-spacer utilization and technique among the caregivers of Bronx minority children with persistent asthma and to determine characteristics associated with correct use. Methods: We analyzed data from 169 caregivers of urban minority children with persistent asthma (aged 2–9 years). MDI-spacer device technique was assessed using a 10-step checklist derived from the national guidelines, literature and manufacturers’ instructions. Based on the median MDI-technique score of six steps demonstrated accurately, caregivers were categorized as correct (seven or more) or incorrect (six or less) users. Results: Of the 169 caregivers, 95% were mothers, mean age 32.3 years (SD 7.6), 56% were unemployed; 74% of the children were Hispanic, 87% had either “not well controlled” or “very poorly controlled” asthma, 92% had a spacer at home and 71% used it “all” or “most” of the time. Only one caregiver correctly demonstrated all 10 steps of the MDI-spacer technique. Child’s having one or more asthma-related hospitalizations in the past 12 months and higher caregiver educational level were independent predictors of correct MDI-spacer technique. Conclusions and relevance: The caregivers of urban, minority children with persistent asthma lack proper MDI-spacer technique, suggesting the potential value of both targeted short- and long-term educational interventions.  相似文献   

7.
Objective: While much research has addressed asthma medication adherence, few have combined quantitative and qualitative data, and none has addressed the triad of child, caregiver, and clinician simultaneously. This study assessed, with mixed methods, barriers to medication adherence within this triad. Methods: We conducted interviews with publicly-insured children with asthma, their caregivers, and their primary-care clinicians. Children (7–17 years) had been prescribed daily inhaled corticosteroids and visited the ED for asthma (past year). Participants answered open-ended and survey questions, rating suggested barriers to medication use (never vs. ever a barrier). McNemar's tests compared report of barriers by each group (children, caregivers, clinicians), and assessed concordance within triads. Results: Fifty child–caregiver dyads participated (34 clinicians). Children (40% female; median age 10 years) had mostly non-Hispanic black (90%) caregivers with less than or equal to high-school education (68%). For barriers, children and clinicians were more likely than caregivers to report medications running out. Clinicians were also more likely to cite controllers being a “pain to take” (vs. children) and forgetfulness (vs. caregivers) (all p < .05). There was a lack of within-triad concordance regarding barriers to adherence, especially regarding medication running out, worrying about taking a daily medication, and medication being a pain to take. Qualitative data revealed themes of competing priorities, home routines, and division of responsibility as prominent contributors to medication adherence. Conclusions: There was significant disagreement among children, caregivers, and clinicians regarding barriers to daily use of asthma medications. To tailor asthma management conversations, clinicians should understand family-specific barriers and child–caregiver disagreements.  相似文献   

8.
Objective: The goal of this study was to compare rates of asthma action plan use by limited English proficiency (LEP) caregivers to English proficient (EP) caregivers. Methods: A cross-sectional bilingual survey was distributed at an urban, academic, pediatric emergency department (PED). Surveys were completed by adult caregivers of children with asthma who sought PED care for asthma related chief complaints. LEP was defined as caregiver ability to speak English less than “very well”. Data were analyzed using Fisher’s exact test and odds ratios (OR). Results: One hundred seven surveys were completed and analyzed. Fifty-one surveys (48%) were completed by LEP caregivers and 56 (52%) by EP caregivers. A 25% difference (p?=?.01) in action plan use rates between LEP caregivers (39%) and EP caregivers (64%) was observed. EP alone was associated with action plan use (OR 2.8 [95% CI 1.3–6.1]). Variables not associated with plan use included mother acting as caregiver (OR 2.1 [95% CI 0.7–7.0]), age of child >7 years (OR 1.0 [95% CI 0.5–2.4]), caregiver education?≥?associate degree (OR 1.4 [95% CI 0.6–3.0]), private insurance (OR 0.7 [95% CI 0.3–1.8]), White race (OR 0.7 [95% CI 0.2–2.2]), Latino ethnicity (OR 0.5 [95% CI 0.2–1.3]) and a federally qualified health center (OR 0.8 [95% CI 0.3–2.0]). The main caregiver reasons for plan use were feeling that a plan works/gets results, helps with symptom management and appreciation towards physician attentiveness when a plan is prescribed. The main caregiver reasons for non plan use were they were not informed/given an action plan or perceived the child’s asthma as mild/well controlled. Conclusion: Compared with EP caregivers, those with LEP experience disparate rates of asthma action plan use.  相似文献   

9.
Objectives: To evaluate limited English proficiency (LEP) Latino caregiver asthma knowledge after exposure to an educational video designed for this target group. Methods: A cross-sectional, interventional study was performed. We aimed to evaluate the post-test impact on asthma knowledge from baseline after exposure to a patient-centered, evidence-based, and professionally produced Spanish asthma educational video. Participants included LEP Latino caregivers of children 2–12 years old with persistent asthma. Enrollment was performed during ED encounters or scheduled through a local community organization. Asthma knowledge was measured with a validated Spanish parental asthma knowledge questionnaire. Differences in mean scores were calculated with a paired t-test. Results: Twenty caregivers were enrolled. Participants included mothers (100%) from Puerto Rico (75%), with a high-school diploma or higher (85%), with no written asthma action plan (65%), whose child's asthma diagnosis was present for at least 3 years (80%). Mean baseline asthma knowledge scores improved 8 points from 58.4 to 66.4 after watching the educational video (95% CI 5.3–10.7; t(19) = 6.21, p < 0.01). Knowledge improvements were similar across the ED and community groups. Knowledge gains were observed in the areas of ED utilization, medication usage, and activity limitations. Conclusions: The developed educational video improved caregiver asthma knowledge for a Latino population facing communication barriers to quality asthma care. Dissemination of this educational resource to LEP caregivers has the potential to improve pediatric asthma care in the United States.  相似文献   

10.
Objective: Subjective social status (SSS) is a person's perception of his/her social standing among others. We explored the relationship between caregivers' SSS and asthma symptoms, visits, and medication use among children with persistent asthma. Methods: We analyzed baseline data of children (3–10 years) from the SB-TEAM trial in Rochester, NY. Using a modified MacArthur Scale of SSS, caregivers rated themselves “a lot worse off” to “a lot better off” compared to 4 groups (e.g., neighbors). “Low SSS” was defined by a response of “a lot worse off” or “somewhat worse off” for any of the referent groups. Caregivers reported their child's asthma symptoms, healthcare visits for asthma, and medication use. Bivariate and multivariate statistics were used. Results: We found that, of the 230 children enrolled (participation rate:78%, 62% Black, 72% Medicaid), 29% of caregivers had low SSS. Caregivers with low SSS had more depressive symptoms (46% vs. 28%) and lower social support (69.1 vs. 77.7). In multivariable analyses, children of caregivers with low SSS had fewer symptom-free days/2 weeks (5.8 vs. 7.9, p = .01). While they were more likely to have a routine asthma visit in the past year (35% vs. 23%, adjusted p = .03), there was no difference in their use of preventive medication. Conclusions: Many caregivers of children with persistent asthma report low SSS. While children of these caregivers had fewer symptom-free days, they were not more likely to use preventive medications. Efforts are needed to support these caregivers to ensure optimal preventive care and reduce morbidity.  相似文献   

11.
《The Journal of asthma》2013,50(8):831-838
Objective. Clinical practice guidelines recommend that physicians provide asthma education to patients and their families. To characterize parents’ and children’s perception of physician practice, we examined: (i) proportion of parents and children reporting physician discussion of asthma education topics; (ii) age-group differences in children’s report; (iii) site differences in children’s and parents’ report; (iv) sociodemographic and disease characteristics associated with children’s report; and (v) the relation between children’s report and adherence to daily controller medications. Methods. We conducted a cross-sectional study of 125 children with asthma (mean age = 11.3 years; 62% were male) and their parents. Parents provided demographic and disease data. Children reported whether physicians had ever discussed each of 16 asthma education topics with them. We used logistic regression to examine age-group and site differences in children’s report of physician discussion of each topic. Multivariate linear regression was used to determine associations between demographic (e.g., child age, race) and disease (e.g., symptom severity) variables and topics discussed. Results. On average, 34.7% of children reported physician discussion of a topic; 8–10-year-olds reported significantly fewer topics discussed than children aged 11 and older (p < .05). Whereas parents’ report differed by practice setting, children’s report did not. In multivariate analyses, child age = 0.46 (SE: 0.17); p < .01), persistent symptoms (β = 1.59 (SE: 0.80); p < .05), and number of outpatient asthma visits (β = 0.19 (SE: 0.08); p < .05) remained significantly associated with number of topics discussed. Conclusion. These results suggest that the majority of children either may not receive, or may not recall receiving, information from their physicians about the fundamentals of asthma management. Physicians have an invaluable teaching opportunity in the medical office visit and should consider capitalizing on this opportunity to build children’s sense of self-efficacy and competence in their self-care.  相似文献   

12.
Objective: The objectives of this study were to (a) qualitatively examine caregiver and child feedback about a gold standard written asthma action plan (WAAP), and (b) determine whether having an asthma action plan was associated with child and caregiver self-efficacy in managing an exacerbation. Methods: This was a cross-sectional analysis of structured interviews with 22 children with persistent asthma that collected feedback about the WAAP as well as self-efficacy. An analysis of interviews used the constant comparative method to identify themes of child and caregiver statements. Caregivers completed a questionnaire that measured asthma management self-efficacy, barriers to managing asthma, and belief in the treatment efficacy using validated scales. Results: Approximately 36% of the caregivers reported having a WAAP for their child from their child's pediatrician. Most caregivers stated that having pictures would improve the WAAP, while most children stated that the layout needed to be improved by adding more space between the sections. Caregivers who reported knowing what the asthma action plan was had greater self-efficacy than caregivers who did not (z = ?1.99, p = 0.047). Conclusions: Re-designing the current WAAP layout and including pictures of inhalers may promote patient understanding. Future research needs to examine if a re-designed WAAP improves asthma management of children with asthma and their caregivers.  相似文献   

13.
In addition to numerous care responsibilities, family caregivers are expected to navigate health systems and engage in healthcare management tasks on behalf of their persons living with dementia (PLWD). These challenging tasks pose additional difficulties for Black dementia caregivers. Due to the centuries-old, disadvantaged social history of Black Americans, several unique stressors, vulnerabilities, and resources have emerged which inform and affect Black dementia caregivers' experiences and well-being. Focus groups were held with Black caregivers (N = 19) from the United States to explore the unique experiences and perspectives of this population navigating the U.S. health system on behalf of their PLWD. Five overarching themes were constructed during thematic analysis: Forced Advocacy, Poor Provider Interaction, Payor Source Dictates Care, Discrimination, and Broken Health System. Black dementia caregivers unanimously concurred that the health system that they experience in America is “broken.” Gaps in the health system can lead to people [as one caregiver passionately expressed] “falling between the cracks,” in terms of care, services, and resources needed. Caregivers agreed that class, sex, utilizing public health insurance, and being a “person of color” contribute to their difficulties navigating the health system. Caregivers perceived being dismissed by providers, forcing them to advocate for both themselves and their PLWD. Healthcare providers and researchers can utilize these findings to improve the experiences and healthcare outcomes of Black persons living with dementia and their caregivers. Additionally, these findings can lead to the development of culturally tailored caregiver education programs.  相似文献   

14.
Abstract

Objective: To assess limited English proficiency (LEP) asthma caregiver quality of life (QoL), skills retention and healthcare utilization after an asthma education fair (AEF). Methods: A language concordant AEF was conducted at a Latino community center. LEP caregivers of children 1–12 years old and an established asthma diagnosis participated in three skill stations: (a) medication recognition and administration, (b) peak flow use (if child?≥?5 years) and (c) action plan dissemination. Spacers, peak flow meters and individualized action plans were distributed. A validated, pediatric asthma caregiver quality of life questionnaire (PACQLQ-Spanish version) was administered. Baseline data was compared to follow-up interview data at three and six months after the AEF. Mean PACQLQ scores were analyzed with Wilcoxon signed-rank test and nominal paired data with McNemar’s test. Results: We analyzed data from 18 caregivers able to speak English well (22%), not well (28%) or not at all (50%). After three months, improved caregiver QoL was experienced (51 vs. 72, p?<?0.01). No differences were observed in medication recognition, spacer and peak flow use or peak flow interpretation. After six months, mean school days missed due to asthma decreased (4.1 vs. 0.4, p?<?0.01). Mean clinic visits, emergency department visits and hospitalizations remained unchanged. Conclusions: Implementation of a community-based AEF with action plan administration can be beneficial for LEP caregivers and their children. QoL improvements to emotional wellbeing and activity limitations were observed, and lower rates of school absenteeism were reported. Caregiver ability to accurately identify medications was not enhanced.  相似文献   

15.
16.
BackgroundsWe focused on the frequency of “gratitude” expressed by home-based care receivers towards family caregivers before they were in the condition that needed care and investigated the relationship with caregiver burden.MethodsThis cross-sectional online survey was completed by 700 family caregivers in Japan. Caregiver burden was assessed using the Zarit Burden Interview. Caregivers with a score of ≤ 19 were defined as having mild caregiver burden, those with a score of 20 to 38 as having moderate, and those with a score of > 38 as having severe. Additionally, caregivers were asked, “How often did you get a ‘thank you’ from your care receiver before they were in a condition that needed care?” Answers were scored using a 11-point Likert scale. Answers with scores 0-2 were defined as low frequency of gratitude, 3-6 as middle, and 7-10 as high.ResultsAmong all caregivers, 233 (33.3%), 229 (32.7%) and 238 (34.0%) accounted for having mild, moderate and severe caregiver burden, respectively. High frequencies of gratitude of 48.9%, 43.7%, and 39.1%, respectively, were concluded with a significantly higher rate in the mild than in the severe caregiver burden group (p = 0.03). The results of multinominal logistic regression analysis, even after adjusting for several factors, show that high frequency of gratitude was significantly associated with caregiver burden (p < 0.01, OR: 0.48, 95%CI: 0.28-0.81).ConclusionsWe found the frequency of gratitude from the care receiver before they were in the condition that needed care was substantially associated with caregiver burden.  相似文献   

17.
Objective: Recent statistics show a relatively high prevalence of asthma among Moroccan children and a weak control over their symptoms. To our knowledge, no research has been carried out to document adherence to the controller treatment in this population. This study aims 1) to assess the extent of children's nonadherence to the controller treatment of asthma in an urban region of Morocco as reported by a family caregiver, and 2) to identify the associated factors. Methods: We conducted a cross-sectional study among caregivers of asthmatic children (2–12 years old) in different health and education facilities of Casablanca-Settat. We administered face-to-face questionnaires incorporating validated instruments (Medication Adherence Rating Scale-Asthma (MARS-A), Beliefs about Medicines Questionnaire (BMQ), Asthma Knowledge Questionnaire). Univariate and multivariate log-binomial regressions evaluating the association between several factors and reported nonadherence were performed (prevalence ratios (PR) and 95% confidence intervals (CI)). Results: Through two public hospitals, three private medical clinics, and one private school, 103 caregivers were recruited. Low adherence to the controller treatment of asthma was reported by 48% of the caregivers (MARS-A <45). In the multivariate model, caregivers with the lowest level of knowledge about asthma were almost three times more likely to report low adherence compared to caregivers with the highest level (PR = 2.93; 95% CI: 1.14–7.52). Conclusions: This study highlights the finding that low adherence is widespread in this context and also the importance of targeting caregivers' knowledge of asthma for interventions.  相似文献   

18.
《The Journal of asthma》2013,50(10):1022-1031
Objective. The purpose of this study was to examine () the extent to which caregivers and children asked asthma management questions during pediatric asthma visits; () the extent to which providers engaged in shared decision-making with these caregivers and children; and () the factors associated with question asking and shared decision-making. Methods. Children aged 8–16 years with mild persistent asthma, moderate persistent asthma, or severe persistent asthma and their caregivers were recruited at five pediatric practices in non-urban areas of North Carolina. All of the medical visits were audio tape recorded. Generalized estimating equations were used to analyze the data. Results. Only 13% of children and 33% of caregivers asked one or more questions about asthma management. Caregivers were more likely to ask questions about their child’s medications. Providers obtained child input into their asthma management plan during only 6% of encounters and caregiver input into their child’s asthma management plan during 10% of visits. Conclusion. Given the importance of involving patients during healthcare visits, providers need to consider asking for and including child and caregiver inputs into asthma management plans so that shared decision-making can occur more frequently.  相似文献   

19.
Objectives: This study examines: 1) adolescent preferences for using asthma self-management mobile applications (apps) to interact with their friends, caregivers, medical providers, and other adolescents with asthma and 2) how caregivers and friends would use mobile apps to communicate with the adolescent and serve as sources of support for asthma management. Methods: We recruited 20 adolescents aged 12–16 years with persistent asthma, their caregivers (n = 20), and friends (n = 3) from two suburban pediatric practices in North Carolina. We gave participants iPods with two preloaded asthma apps and asked them to use the apps for 1 week. Adolescents and caregivers provided app feedback during a semi-structured interview at a regularly-scheduled clinic appointment and during a telephone interview one week later. Friends completed one telephone interview. Interviews were audio-recorded and transcribed verbatim. An inductive, theory-driven analysis was used to identify themes and preferences. Results: Adolescents preferred to use apps for instrumental support from caregivers, informational support from friends, and belonging and informational support from others with asthma. The majority of adolescents believed apps could enhance communication with their caregivers and medical providers, and the theme of self-reliance emerged in which caregivers and adolescents believed apps could enable adolescents to better self-manage their asthma. Friends preferred to use apps to provide instrumental and informational support. Conclusions: Given preferences expressed in this study, apps may help adolescents obtain social support to better self-manage their asthma. Future app-based interventions should include features enabling adolescents with asthma to communicate and interact with their caregivers, medical providers, and friends.  相似文献   

20.
Objective: Studies comparing physical activity levels in children with and without asthma have had mixed results. Our objective was to investigate the association between asthma diagnosis and physical activity and to examine differences in these associations by race/ethnicity, weight status and caregiver education. Methods: We investigated the association between asthma (defined as report of physician-diagnosed asthma with at least one asthma related symptom) and measures of physical and sedentary activity in a study of 6- to 8-year-old girls in the Breast Cancer and the Environment Research Project. We compared reported activity and pedometer measurements among girls with and without asthma, and examined modification of these associations by race/ethnicity, weight status and caregiver education. Results: Girls (n?=?1182) were included with 33.5% White, 4.8% Asian, 30.6% non Hispanic Black and 30.7% Hispanic. Asthma was present in 16.2% of girls. Overall, 38% of girls reported no participation in organized recreational activities and 58% had >2?h/day of television, video game and computer time combined. Girls with asthma whose parents were less educated reported fewer pedometer steps and less non-scheduled activity than girls without asthma with similar caregiver education level. Among girls with asthma, those on a controller medication had higher levels of sedentary activity and more structured physical activity but were less likely to report high intensity physical activity. Conclusions: Among girls whose parents are less educated, girls with asthma may have lower physical activity levels than girls without asthma. Use of a controller medication may be related to physical and sedentary activity.  相似文献   

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