Background Use of hydroxyurea (HU) in children with sickle cell disease (SCD) may be hampered by its formulation as a capsule and the limited availability of liquid HU. Procedure At four Pediatric SCD clinics, parents of children with SCD ages 5–17 years were surveyed about their children’s medication use and ability to swallow medication. Data were stratified by HU therapy and analyzed using descriptive statistics, Chi square tests, Fisher exact tests and univariate analysis. Results Of the 116 parents surveyed, 97% were the primary caregiver. One fourth (26%) of parents reported that their child’s difficulty swallowing medication interfered with daily medication use. Age-related differences were found in ability to swallow medication, but not by HU use. Children taking HU were more likely to take multiple daily medications, with more frequent dosing schedules. Among 65 HU users, children using the liquid formulation (28%, n =18) were younger than capsule users (P <0.0001). Nonetheless, half of liquid HU users were aged 8–13. Children using liquid HU were more likely to have difficulties swallowing medication than those who use HU capsules (OR 4.29, 95% CI 1.14–16.18, P =0.032). Few had received training for swallowing medication. Conclusions One fourth of surveyed parents viewed swallowing as challenging to daily medication use. These findings suggest that difficulty swallowing capsules is a fairly frequent barrier to for children prescribed HU, especially for younger children. HU use appears more likely in families with daily and more complex medication schedules. Coaching for swallowing capsules may improve HU utilization and adherence.
BackgroundMobile communication technologies provide novel opportunities to support clinic-based health initiatives. Adoption of technologies for daily use and for health communication can differ between communities, depending upon demographic and cultural characteristics.Design and methodsA survey was administered in adolescent primary care and subspecialty clinics to assess parent-adolescent preferences in use of mobile technologies and social media to support provider-patient communication in an urban Latino community.ResultsOf 130 respondents (65 parent-adolescent pairs), approximately half frequently sent and received text messages but lacked agreement regarding the other’s text messaging use. In contrast, adolescents only rarely used email compared to parents (15.4% versus 37.5%, P=0.006). Of social media, Facebook™/MySpace™ was most frequently used by parents and youth (60% and 55.4%, P=0.59); however, most lacked interest in using social media for health communication. Parents reported more interest than adolescents in receiving email (73.4% versus 35.9%, P<0.001) and text messages (58.5% versus 33.9%, P=0.005) for health, but had more concerns about privacy issues (26.2% versus 9.2%, P=0.01). Respondents who were American born (aOR 5.7, 95%CI 1.2-28.5) or regularly used Instant Messaging or Facebook™/MySpace™ (aOR 4.6, 95%CI 1.4-14.7) were more likely to be interested in using social media for health communication.ConclusionsThese findings underscore the importance of targeted assessment for planning the utilization of communication technologies and social media in clinical care or research for underserved youth.Significance for public healthCommunication technologies provide novel opportunities to support clinic-based health initiatives for underserved youth. However, adoption of technologies among communities may differ depending upon demographic and cultural characteristics. We surveyed a sample of urban Latino parents and youth regarding their current use of mobile and social media technologies and preferences for use of these technologies for health communication. This is the first study to compare the perspective of underserved parents and their youth regarding use of a wide variety of mobile and social communication technologies, concordance between youth-parent pairs in perceived use of texting and preferences for the purpose of health communication. Our findings differ from those from adults surveyed in other under-served communities, highlighting heterogeneity between communities. Variations in use of communication technologies and social media and preferences between parent-youth pairs suggest that understanding these factors within target populations is crucial for successful use to support health and health services.
Purpose of reviewTo examine the five domains of social determinants of health – economic stability, education access, healthcare access and quality, neighborhood and built environment, and social and community context – and how these relate to caregiver stress in under-resourced populations.Recent findingsSocioeconomic and family factors are increasingly understood as drivers of child health. Caregiver stress can impact family stability and child wellbeing. Immigrant parents, caregivers of children with medical complexity, and adolescent parents experience stressors due to the unique needs of their families. These groups of parents and caregivers also face various challenges identified as social determinants of health. Interventions to mitigate these challenges can promote resilience, care coordination, and community-based supports.SummaryCurrent research describes caregiver stress in key populations, how caregiver stress affects children, and approaches to minimize and mitigate these effects. Pediatric providers can implement best practices to support families who are navigating stress due to caregiving and social determinants of health.
Introduction Barriers to hydroxyurea (HU) use exist for children with sickle cell disease (SCD). Anecdotally, some parents report that their children struggle to swallow HU capsules. We hypothesized that difficulties in swallowing capsules and other forms of daily medication may be a barrier to pediatric HU use. Methods A self-administered survey of parents of children with SCD ages 5-17 years was conducted in pediatric SCD clinics at four different sites (see author affiliations). Parents submitted one survey for each eligible child. We assessed views on their child's medication regimen, including HU; how medications were swallowed; whether swallowing difficulties were perceived as barriers to medication adherence and whether children taking HU had fewer difficulties taking medication. Respondents were grouped by whether children were on HU therapy. Data were analyzed using descriptive statistics, chi square and Fisher exact tests. Results A total of 122 adults completed the survey, with 27-35 surveys obtained from each site. Of survey respondents, 98% were parents and 95% reported being the child's primary caregiver. Half of all children were ages 8-13 years, and 23% were 7 or younger. Groups were evenly divided by whether children were taking HU (n=61 in both groups). There were no significant differences between groups regarding parent or child age, number of children living in the home or choice of the Spanish version of the survey. Parents of children in the group taking HU had a higher level of education (p=0.04). We found 24% of all parents thought that swallowing medications was “hard to do”. Most (85%) parents reported that swallowing difficulties did not preclude daily medication use, with no differences by HU use. All (98%) children could swallow liquid medication, with two thirds reported as able to do so by age 1. In contrast, 76% of children could swallow pills, with 40% able to do so by age 4. No differences by HU use were found in overall ability or age to swallow pills, although more in the HU group could swallow large pills (78.4 vs. 54.2%, p=0.03). No differences between groups were found in ability to swallow capsules. Across all age groups, 26.5% of children could not swallow capsules. Only 20% of all children could swallow capsules by age 4. Of children taking HU, 71.4% used the capsule form. Only 17% of those children open the capsules to mix with a liquid or soft food to aid in swallowing. Few (11%) children in both groups had received training for medication swallowing; most of their parents perceived the training as helpful to their child. While 96% of the children were prescribed medication, children taking HU were more likely than the others to be taking any medication (100 vs. 85%, p=0.001), and twice as likely to take medication on a daily basis (98.4 vs. 51.6%, p=0.001). Parents of children taking HU more often reported that their children took multiple medications (<0.001), including more pills daily (p=0.02). Children on HU had a medication regimen of more than once daily (61.7 vs. 28.6%, p<0.001). Conclusions Based on self-report, the majority of parents of children with SCD did not view medication swallowing as an impediment to daily use of medications, including HU. Children in the HU group reported less difficulty swallowing large pills, but were not different in their ability to ingest capsules, small pills or liquid medication. These data suggest that difficulty swallowing medication is not a barrier to HU use for most children. Nonetheless, a substantial proportion of children ages 5-17 cannot swallow capsules; children under 5 are especially challenged. Therefore, coaching for swallowing to improve HU uptake could be targeted to the modest proportion of children who need assistance. Moreover, a reliable source of liquid HU is still needed for children who cannot swallow capsules. Our findings also suggest that HU use is more likely in families committed to daily medication use and more complex medication schedules, or for children with medical needs requiring therapy beyond once daily HU. Clinicians should continue to educate families about the benefits of HU and address potential impediments such as swallowing HU capsules and complex medication regimens. This study received support from NIH 1R21NR013745 (Green and Smaldone, PIs). Disclosures: Off Label Use: Hydroxyurea for treating children with sickle cell disease is off-label use.
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