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1.
Pediatr Res ; 95(7): 1726-1733, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38365871

ABSTRACT

The United States (U.S.) National Institutes of Health-funded Environmental influences on Child Health Outcomes (ECHO)-wide Cohort was established to conduct high impact, transdisciplinary science to improve child health and development. The cohort is a collaborative research design in which both extant and new data are contributed by over 57,000 children across 69 cohorts. In this review article, we focus on two key challenging issues in the ECHO-wide Cohort: data collection standardization and data harmonization. Data standardization using a Common Data Model and derived analytical variables based on a team science approach should facilitate timely analyses and reduce errors due to data misuse. However, given the complexity of collaborative research designs, such as the ECHO-wide Cohort, dedicated time is needed for harmonization and derivation of analytic variables. These activities need to be done methodically and with transparency to enhance research reproducibility. IMPACT: Many collaborative research studies require data harmonization either prior to analyses or in the analyses of compiled data. The Environmental influences on Child Health Outcomes (ECHO) Cohort pools extant data with new data collection from over 57,000 children in 69 cohorts to conduct high-impact, transdisciplinary science to improve child health and development, and to provide a national database and biorepository for use by the scientific community at-large. We describe the tools, systems, and approaches we employed to facilitate harmonized data for impactful analyses of child health outcomes.


Subject(s)
Research Design , Humans , Cohort Studies , Child , Research Design/standards , United States , Data Collection/standards , Data Collection/methods , Child Health/standards , Reproducibility of Results , National Institutes of Health (U.S.)/standards , Child, Preschool
2.
Matern Child Health J ; 28(3): 383-390, 2024 Mar.
Article in English | MEDLINE | ID: mdl-39071854

ABSTRACT

Purpose: Professionals in the field of maternal and child health (MCH) epidemiology are publicly recognized by the Coalition for Excellence in MCH Epidemiology representing 16 national MCH agencies and organizations. Description: During the CityMatCH Leadership and MCH Epidemiology Conference, the national awards are presented to public health professionals for improving the health of women, children, and families. The awards have evolved over the last two decades with focus on awardees that represent more types of MCH public health professionals. Assessment: Since 2000, the Coalition has presented 111 national awards in the areas of advancing knowledge, effective practice, outstanding leadership, excellence in teaching and mentoring, early career professional achievement, and lifetime achievement. Effective practice awards were most often presented at 45 awards, followed by early career professional achievement with 20. The awardees varied by place of employment with 37 employed at academic institutions, 33 in federal government positions, 32 in state or county government, seven in non-profit and two in clinical organizations. Awards were almost equally distributed by gender with 49 presented to women and 48 to men. Assessment of career advancement among previous awardees and acknowledging workforce challenges are gaps identified within the national awards process. Conclusion: Recognition of deserving MCH professionals sets the standard for those entering the field of MCH epidemiology and offers opportunity to recognize those who have built capacity and improved the health of women, children, and families.


Subject(s)
Awards and Prizes , Child Health , Epidemiology , Humans , Child Health/standards , Female , Child , Leadership , Male , Maternal Health/standards , United States
3.
Health Qual Life Outcomes ; 19(1): 205, 2021 Aug 26.
Article in English | MEDLINE | ID: mdl-34446001

ABSTRACT

BACKGROUND: Although there is emerging data regarding the psychometric properties of the Child Health Utility-9D instrument, more evidence is required with respect to its validity for use in different country settings. The aim of this study was to examine the construct validity of the CHU-9D-CHN instrument in Chinese children. METHODS: Baseline Health-Related Quality of Life (HRQoL) and demographic data were collected from children recruited to the CHIRPY DRAGON obesity prevention intervention randomised controlled trial in China. HRQoL was measured using the Chinese version of the CHU-9D instrument (CHU-9D-CHN) and the PedsQL instrument. CHU-9D-CHN utility scores were generated using two scoring algorithms [UK and Chinese tariffs]. Discriminant validity, known-group validity and convergent validity were evaluated using non-parametric test for trend, Kruskal-Wallis test and Spearman correlation coefficient analysis respectively. RESULTS: Data was available for 1,539 children (mean age 6 years). The CHU-9D-CHN was sensitive to known group differences determined by the median PedsQL total score. Furthermore, the mean CHU-9D-CHN utility values decreased linearly with increasing levels of severity on each dimension of the PedsQL for emotional and social functioning domains. They decreased monotonically with increasing levels of severity on each dimension of the PedsQL for physical and school functioning domains (p < 0.001). Contrary to studies conducted in Western countries, and although not statistically significant, we found an indication that HRQoL, using both the CHU-9D-CHN and the PedsQL, was higher in children whose parents had lower levels of education, compared to those whose parents were university educated. The correlation between the CHU-9D-CHN utility values using UK and Chinese tariffs, and PedsQL total scores showed a statistically significant moderate positive correlation (Spearman's rho = 0.5221, p < 0.001 and Spearman's rho = 0.5316, p < 0.001), respectively. However, each CHU-9D-CHN dimension was either weakly, or very weakly correlated with each of the predetermined PedsQL domain functioning scores. CONCLUSIONS: Overall, the findings provide some support for the construct validity of the CHU-9D-CHN within a Chinese population aged 6-7 years. However, some uncertainty remains. We recommend future studies continue to test the validity of the CHU-9D in different country settings. TRIAL REGISTRATION: ISRCTN Identifier ISRCTN11867516, Registered on 19/08/2015.


Subject(s)
Child Health/standards , Psychometrics/methods , Quality of Life/psychology , Surveys and Questionnaires/standards , Asian People , Child , China , Female , Humans , Male , Reproducibility of Results , Schools
4.
Health Qual Life Outcomes ; 19(1): 45, 2021 Feb 05.
Article in English | MEDLINE | ID: mdl-33546723

ABSTRACT

OBJECTIVE: This study aimed to conduct a systematic review and meta-analysis to compare differences in health utilities (HUs) assessed by self and proxy respondents in children, as well as to evaluate the effects of health conditions, valuation methods, and proxy types on the differences. METHODS: Eligible studies published in PubMed, Embase, Web of Science, and Cochrane Library up to December 2019 were identified according to PRISMA guidelines. Meta-analyses were performed to calculate the weighted mean differences (WMDs) in HUs between proxy- versus self-reports. Mixed-effects meta-regressions were applied to explore differences in WMDs among each health condition, valuation method and proxy type. RESULTS: A total of 30 studies were finally included, comprising 211 pairs of HUs assessed by 15,294 children and 16,103 proxies. This study identified 34 health conditions, 10 valuation methods, and 3 proxy types. In general, proxy-reported HUs were significantly different from those assessed by children themselves, while the direction and magnitude of these differences were inconsistent regarding health conditions, valuation methods, and proxy types. Meta-regression demonstrated that WMDs were significantly different in patients with ear diseases relative to the general population; in those measured by EQ-5D, Health utility index 2 (HUI2), and Pediatric asthma health outcome measure relative to Visual analogue scale method; while were not significantly different in individuals adopting clinician-proxy and caregiver-proxy relative to parent-proxy. CONCLUSION: Divergence existed in HUs between self and proxy-reports. Our findings highlight the importance of selecting appropriate self and/or proxy-reported HUs in health-related quality of life measurement and economic evaluations.


Subject(s)
Child Health/standards , Health Status Indicators , Proxy , Self Report , Adolescent , Child , Cost-Benefit Analysis , Female , Humans , Male , Parents/psychology , Quality of Life , Visual Analog Scale
5.
Qual Life Res ; 30(4): 967-981, 2021 Apr.
Article in English | MEDLINE | ID: mdl-33156434

ABSTRACT

PURPOSE: The current study sought to review instruments measuring self-care for adolescents with health needs to provide a summary of the tools available for conducting self-care research in this population. METHOD: Studies were mainly identified through searches in three electronic bibliographic databases (i.e., PsycINFO, CINAHL, and PubMed) and additional sources to retrieve relevant articles. Studies were included if they focused on self-care measures, included samples of adolescents (ages 10-19), were published in English peer-reviewed journals, dissertations, and from the years 1980 through 2020. The COnsensus-based Standards for the selection of health status Measurement Instruments (COSMIN) was used to assess the methodological quality of each study and evaluate the measurement quality based on available studies. RESULTS: A total of ten scales from 12 papers were identified to meet the search criteria and designed for adolescent patients with three types of health needs, including diabetes, cystic fibrosis, and others (female care and nutrition). There is a lack of a clear and comprehensive definition of self-care for different health needs. The dominant focus of the scales was the behavioral aspect of self-care (e.g., adherence to medication regimen), with only a few scales (e.g., female care) assessing the psychological aspect of self-care. The quality of the psychometric properties of the scales varied greatly. CONCLUSIONS: Results highlighted the need for more research on developing and validating self-care measures for adolescents with health needs. The unique developmental characteristics of adolescents should be adequately considered, and the psychological aspect of self-care should be incorporated in measurement development.


Subject(s)
Child Health/standards , Psychometrics/methods , Quality of Life/psychology , Self Care/methods , Adolescent , Adult , Child , Female , Humans , Male , Surveys and Questionnaires , Young Adult
6.
Environ Health Prev Med ; 26(1): 106, 2021 Oct 28.
Article in English | MEDLINE | ID: mdl-34711169

ABSTRACT

BACKGROUND: Although long maternal working hours are reported to have a negative effect on children's dietary habits, few studies have investigated this issue in Japan. Healthy dietary habits in childhood are important because they may reduce the risk of future disease. Here, we examined the relationship between maternal employment status and children's dietary intake in 1693 pairs of Japanese primary school 5th and 6th graders and their mothers. METHODS: The survey was conducted using two questionnaires, a brief-type self-administered diet history questionnaire and a lifestyle questionnaire. The analysis also considered mothers' and children's nutrition knowledge, attitudes toward diet, and some aspects of family environment. RESULTS: Longer maternal working hours were associated with children's higher intake of white rice (g/1000kcal) (ß 11.4, 95%CI [1.0, 21.9]; working ≥8h vs. not working), lower intake of confectioneries (g/1000kcal) (ß -4.0 [-7.6, -0.4]), and higher body mass index (BMI) (kg/m2) (ß 0.62 [0.2, 1.0]). Although maternal employment status was not significantly associated with lower intake of healthy food (e.g., vegetables) or higher intake of unhealthy food (e.g., sweetened beverages) in the children, in contrast with previous studies, it may have affected children's energy intake through their higher intake of white rice. Further, children's nutrition knowledge and attitudes toward diet, mothers' food intake, and some family environment factors were significantly associated with intakes of vegetables and sweetened beverages in the children. CONCLUSIONS: Longer maternal working hours were significantly associated with higher intake of white rice and lower intake of confectioneries, as well as higher BMI among children. Even when a mother works, however, it may be possible to improve her child's dietary intake by other means such as nutrition education for children or enhancement of food environment.


Subject(s)
Child Health/standards , Diet/standards , Employment , Health Knowledge, Attitudes, Practice , Mothers , Nutritional Status , Adult , Child , Diet Surveys , Female , Humans , Japan , Life Style , Male , Middle Aged , Surveys and Questionnaires
7.
Crit Care Med ; 48(12): 1819-1828, 2020 12.
Article in English | MEDLINE | ID: mdl-33048905

ABSTRACT

OBJECTIVES: More children are surviving critical illness but are at risk of residual or new health conditions. An evidence-informed and stakeholder-recommended core outcome set is lacking for pediatric critical care outcomes. Our objective was to create a multinational, multistakeholder-recommended pediatric critical care core outcome set for inclusion in clinical and research programs. DESIGN: A two-round modified Delphi electronic survey was conducted with 333 invited research, clinical, and family/advocate stakeholders. Stakeholders completing the first round were invited to participate in the second. Outcomes scoring greater than 69% "critical" and less than 15% "not important" advanced to round 2 with write-in outcomes considered. The Steering Committee held a virtual consensus conference to determine the final components. SETTING: Multinational survey. PATIENTS: Stakeholder participants from six continents representing clinicians, researchers, and family/advocates. MEASUREMENTS AND MAIN RESULTS: Overall response rates were 75% and 82% for each round. Participants voted on seven Global Domains and 45 Specific Outcomes in round 1, and six Global Domains and 30 Specific Outcomes in round 2. Using overall (three stakeholder groups combined) results, consensus was defined as outcomes scoring greater than 90% "critical" and less than 15% "not important" and were included in the final PICU core outcome set: four Global Domains (Cognitive, Emotional, Physical, and Overall Health) and four Specific Outcomes (Child Health-Related Quality of Life, Pain, Survival, and Communication). Families (n = 21) suggested additional critically important outcomes that did not meet consensus, which were included in the PICU core outcome set-extended. CONCLUSIONS: The PICU core outcome set and PICU core outcome set-extended are multistakeholder-recommended resources for clinical and research programs that seek to improve outcomes for children with critical illness and their families.


Subject(s)
Critical Care/standards , Intensive Care Units, Pediatric/standards , Adult , Aged , Child , Child Health/standards , Critical Illness/psychology , Critical Illness/therapy , Delphi Technique , Female , Humans , Male , Middle Aged , Stakeholder Participation , Treatment Outcome , Young Adult
8.
Qual Life Res ; 29(3): 639-652, 2020 Mar.
Article in English | MEDLINE | ID: mdl-31745690

ABSTRACT

BACKGROUND: The Paediatric Quality of Life InventoryTM 4.0 Generic Core Scales (PedsQL) is a non-preference based instrument for assessing health related quality of life (HRQoL) in children. Recent papers presented algorithms of parental proxy and short-form versions of the PedsQL onto the validated preference-based Child Health Utility 9D (CHU9D) instrument, to enable conversion of PedsQL scores to quality adjusted life years for use in economic evaluation. However, further research was needed to both validate these algorithms, and assess if use of the full 23-item PedsQL self-report instrument is preferable to other PedsQL versions for mapping onto child self-report CHU9D utilities. OBJECTIVE: To develop a mapping algorithm for converting the 23-item PedsQL instrument onto the CHU9D instrument and provide an external validation of two recently published algorithms that might be considered alternatives. METHODS: Data from children in the Longitudinal Study of Australian Children (LSAC) were used (N = 1801). Six econometric methods were compared to identify the best algorithms, assessed against a series of goodness-of-fit criteria. The same data and goodness-of-fit criteria were used in the external validation exercise for previously published mapping algorithms. RESULTS: The optimal mapping algorithm was identified, which used PedsQL dimension scores to predict the CHU9D utilities. It performed well against standard goodness-of-fit tests. The external validation exercise revealed the recently published alternative algorithms also performed relatively well. CONCLUSION: The identified mapping algorithms can be used to facilitate cost-utility analysis in comparable populations when only the PedsQL instrument is available. Results from this population indicate the algorithms identified in this paper are well suited for estimating CHU9D self-report utilities when the full 23-item self-report PedsQL instrument has been used.


Subject(s)
Algorithms , Child Health/standards , Cost-Benefit Analysis/methods , Quality of Life/psychology , Child , Female , Humans , Longitudinal Studies , Male , Surveys and Questionnaires
9.
Cochrane Database Syst Rev ; 8: CD013679, 2020 07 14.
Article in English | MEDLINE | ID: mdl-32813276

ABSTRACT

BACKGROUND: The global burden of poor maternal, neonatal, and child health (MNCH) accounts for more than a quarter of healthy years of life lost worldwide. Targeted client communication (TCC) via mobile devices (MD) (TCCMD) may be a useful strategy to improve MNCH. OBJECTIVES: To assess the effects of TCC via MD on health behaviour, service use, health, and well-being for MNCH. SEARCH METHODS: In July/August 2017, we searched five databases including The Cochrane Central Register of Controlled Trials, MEDLINE and Embase. We also searched two trial registries. A search update was carried out in July 2019 and potentially relevant studies are awaiting classification. SELECTION CRITERIA: We included randomised controlled trials that assessed TCC via MD to improve MNCH behaviour, service use, health, and well-being. Eligible comparators were usual care/no intervention, non-digital TCC, and digital non-targeted client communication. DATA COLLECTION AND ANALYSIS: We used standard methodological procedures recommended by Cochrane, although data extraction and risk of bias assessments were carried out by one person only and cross-checked by a second. MAIN RESULTS: We included 27 trials (17,463 participants). Trial populations were: pregnant and postpartum women (11 trials conducted in low-, middle- or high-income countries (LMHIC); pregnant and postpartum women living with HIV (three trials carried out in one lower middle-income country); and parents of children under the age of five years (13 trials conducted in LMHIC). Most interventions (18) were delivered via text messages alone, one was delivered through voice calls only, and the rest were delivered through combinations of different communication channels, such as multimedia messages and voice calls. Pregnant and postpartum women TCCMD versus standard care For behaviours, TCCMD may increase exclusive breastfeeding in settings where rates of exclusive breastfeeding are less common (risk ratio (RR) 1.30, 95% confidence intervals (CI) 1.06 to 1.59; low-certainty evidence), but have little or no effect in settings where almost all women breastfeed (low-certainty evidence). For use of health services, TCCMD may increase antenatal appointment attendance (odds ratio (OR) 1.54, 95% CI 0.80 to 2.96; low-certainty evidence); however, the CI encompasses both benefit and harm. The intervention may increase skilled attendants at birth in settings where a lack of skilled attendants at birth is common (though this differed by urban/rural residence), but may make no difference in settings where almost all women already have a skilled attendant at birth (OR 1.00, 95% CI 0.34 to 2.94; low-certainty evidence). There were uncertain effects on maternal and neonatal mortality and morbidity because the certainty of the evidence was assessed as very low. TCCMD versus non-digital TCC (e.g. pamphlets) TCCMD may have little or no effect on exclusive breastfeeding (RR 0.92, 95% CI 0.79 to 1.07; low-certainty evidence). TCCMD may reduce 'any maternal health problem' (RR 0.19, 95% CI 0.04 to 0.79) and 'any newborn health problem' (RR 0.52, 95% CI 0.25 to 1.06) reported up to 10 days postpartum (low-certainty evidence), though the CI for the latter includes benefit and harm. The effect on health service use is unknown due to a lack of studies. TCCMD versus digital non-targeted communication No studies reported behavioural, health, or well-being outcomes for this comparison. For use of health services, there are uncertain effects for the presence of a skilled attendant at birth due to very low-certainty evidence, and the intervention may make little or no difference to attendance for antenatal influenza vaccination (RR 1.05, 95% CI 0.71 to 1.58), though the CI encompasses both benefit and harm (low-certainty evidence). Pregnant and postpartum women living with HIV TCCMD versus standard care For behaviours, TCCMD may make little or no difference to maternal and infant adherence to antiretroviral (ARV) therapy (low-certainty evidence). For health service use, TCC mobile telephone reminders may increase use of antenatal care slightly (mean difference (MD) 1.5, 95% CI -0.36 to 3.36; low-certainty evidence). The effect on the proportion of births occurring in a health facility is uncertain due to very low-certainty evidence. For health and well-being outcomes, there was an uncertain intervention effect on neonatal death or stillbirth, and infant HIV due to very low-certainty evidence. No studies reported on maternal mortality or morbidity. TCCMD versus non-digital TCC The effect is unknown due to lack of studies reporting this comparison. TCCMD versus digital non-targeted communication TCCMD may increase infant ARV/prevention of mother-to-child transmission treatment adherence (RR 1.26, 95% CI 1.07 to 1.48; low-certainty evidence). The effect on other outcomes is unknown due to lack of studies. Parents of children aged less than five years No studies reported on correct treatment, nutritional, or health outcomes. TCCMD versus standard care Based on 10 trials, TCCMD may modestly increase health service use (vaccinations and HIV care) (RR 1.21, 95% CI 1.08 to 1.34; low-certainty evidence); however, the effect estimates varied widely between studies. TCCMD versus non-digital TCC TCCMD may increase attendance for vaccinations (RR 1.13, 95% CI 1.00 to 1.28; low-certainty evidence), and may make little or no difference to oral hygiene practices (low-certainty evidence). TCCMD versus digital non-targeted communication TCCMD may reduce attendance for vaccinations, but the CI encompasses both benefit and harm (RR 0.63, 95% CI 0.33 to 1.20; low-certainty evidence). No trials in any population reported data on unintended consequences. AUTHORS' CONCLUSIONS: The effect of TCCMD for most outcomes is uncertain. There may be improvements for some outcomes using targeted communication but these findings were of low certainty. High-quality, adequately powered trials and cost-effectiveness analyses are required to reliably ascertain the effects and relative benefits of TCCMD. Future studies should measure potential unintended consequences, such as partner violence or breaches of confidentiality.


Subject(s)
Cell Phone , Child Health/standards , Communication , Health Services Needs and Demand , Infant Health/standards , Maternal Health/standards , Breast Feeding/statistics & numerical data , Child Health/statistics & numerical data , Child, Preschool , Delivery, Obstetric/standards , Female , HIV Infections/drug therapy , Health Behavior , Health Status , Humans , Infant , Infant Health/statistics & numerical data , Infant, Newborn , Maternal Health/statistics & numerical data , Medication Adherence/statistics & numerical data , Postpartum Period , Pregnancy , Prenatal Care/statistics & numerical data , Quality Improvement , Randomized Controlled Trials as Topic , Text Messaging
10.
Matern Child Health J ; 24(4): 405-411, 2020 Apr.
Article in English | MEDLINE | ID: mdl-32052275

ABSTRACT

PURPOSE: To examine the extent to which communities participating in the Collective Impact Learning Collaborative (CILC) increased capacity to create conditions for collective impact (CI) to address racial disparities in maternal and child health (MCH) and align local efforts with state MCH priorities over a 12-month period. DESCRIPTION: Eight communities participated in a learning collaborative that involved the provision of technical assistance via webinars, monthly team calls, and site visits to facilitate the development of a collective impact initiative. A Ready-Set-Go approach to technical assistance was used to guide the communities through each phase of development while also providing individual assistance to teams based on their capacity at the start of participation. ASSESSMENT: A pre/post design measured change in capacity to engage in CI efforts over time. A survey designed to assess the completion of core tasks related to early indicators of CI was completed at baseline and 12 months later. Wilcoxon Signed Ranks Test and Mann-Whitney test determined statistically significant progress towards outcomes over 12 months and differences in progress between high- and low- capacity teams. CONCLUSION: In 12 months, teams with little established groundwork made significant progress, in some ways exceeding progress of more established teams. Statistically significant progress was achieved in eleven of fourteen outcomes measured. Five teams aligned local efforts with state priorities after 12 months. Findings suggest technical assistance to establish conditions for collective impact can support progress even when pre-conditions for collective impact are not previously established.


Subject(s)
Child Health/standards , Maternal Health/standards , Child Health/statistics & numerical data , Community Participation/methods , Community Participation/trends , Humans , Maternal Health/statistics & numerical data , Maternal-Child Health Centers/organization & administration , Maternal-Child Health Centers/trends , Surveys and Questionnaires
11.
Matern Child Health J ; 24(4): 432-438, 2020 Apr.
Article in English | MEDLINE | ID: mdl-31832912

ABSTRACT

OBJECTIVES: Toddlers are vulnerable to unintentional injuries. A safety intervention targeting low-income families of toddlers, was effective at improving home safety. The current study examined whether the effect varies by initial home safety problems. METHODS: 277 mother-toddler dyads recruited in the Mid-Atlantic region of the United States during 2007-2010 were randomized into safety promotion (n = 91) or attention-control groups (n = 186). Observers rated participants' homes with a 9-item safety problem checklist at baseline, and at 6- and 12-months follow-up. Initial home safety problems were categorized as multiple (≥ 4 problems) and none/few (< 4). Linear mixed models assessed the moderating effect with a three-way interaction (time, intervention, and initial safety problems). RESULTS: At 12 months, the intervention effect was stronger among families with multiple initial problems than no/few initial problems, with a reduction of 1.55 more problems among the families with multiple problems, compared to the families with no/few problems (b = - 1.55, SE = 0.62, p = 0.013). CONCLUSIONS: Interventions targeting families with multiple safety problems may be more effective than universal programming.


Subject(s)
Accidents, Home/prevention & control , Child Health/standards , Health Promotion/methods , Safety/standards , Accidents, Home/statistics & numerical data , Adult , Child Health/statistics & numerical data , Child, Preschool , Female , Health Promotion/standards , Health Promotion/statistics & numerical data , Home Care Services/standards , Home Care Services/statistics & numerical data , Humans , Infant , Male , Mother-Child Relations/psychology , Safety/statistics & numerical data , Urban Population
12.
J Med Internet Res ; 22(3): e14562, 2020 03 13.
Article in English | MEDLINE | ID: mdl-32167478

ABSTRACT

BACKGROUND: Connecting parents to research evidence is known to improve health decision making. However, guidance on how to develop effective knowledge translation (KT) tools that synthesize child-health evidence into a form understandable by parents is lacking. OBJECTIVE: The aim of this study was to conduct a comparative usability analysis of three Web-based KT tools to identify differences in tool effectiveness, identify which format parents prefer, and better understand what factors affect usability for parents. METHODS: We evaluated a Cochrane plain language summary (PLS), Blogshot, and a Wikipedia page on a specific child-health topic (acute otitis media). A mixed method approach was used involving a knowledge test, written usability questionnaire, and a semistructured interview. Differences in knowledge and usability questionnaire scores for each of the KT tools were analyzed using Kruskal-Wallis tests, considering a critical significance value of P=.05. Thematic analysis was used to synthesize and identify common parent preferences among the semistructured interviews. Key elements parents wanted in a KT tool were derived through author consensus using questionnaire data and parent interviews. RESULTS: In total, 16 parents (9 female) with a mean age of 39.6 (SD 11.9) years completed the study. Parents preferred the Blogshot over the PLS and Wikipedia page (P=.002) and found the Blogshot to be the most aesthetic (P=.001) and easiest to use (P=.001). Knowledge questions and usability survey data also indicated that the Blogshot was the most preferred and effective KT tool at relaying information about the topic. Four key themes were derived from thematic analysis, describing elements parents valued in KT tools. Parents wanted tools that were (1) simple, (2) quick to access and use, and (3) trustworthy, and which (4) informed how to manage the condition. Out of the three KT tools assessed, Blogshots were the most preferred tool by parents and encompassed these four key elements. CONCLUSIONS: It is important that child health evidence be available in formats accessible and understandable by parents to improve decision making, use of health care resources, and health outcomes. Further usability testing of different KT tools should be conducted involving broader populations and other conditions (eg, acute vs chronic) to generate guidelines to improve KT tools for parents.


Subject(s)
Child Health/standards , Translational Research, Biomedical/methods , Adult , Female , Humans , Internet , Male , Surveys and Questionnaires
13.
J Med Internet Res ; 22(8): e19985, 2020 08 25.
Article in English | MEDLINE | ID: mdl-32840484

ABSTRACT

BACKGROUND: Parents commonly use the internet to search for information about their child's health-related symptoms and guide parental health-related decisions. Despite the impact of parental online health seeking on offline health behaviors, this area of research remains understudied. Previous literature has not adequately distinguished searched behaviors when searching for oneself or one`s child. OBJECTIVE: The purpose of this review is to examine prevalences and associated variables of parent-child online health information seeking; investigate parents' health-related online behavior regarding how they find, use, and evaluate information; and identify barriers and concerns that they experience during the search. Based on this analysis, we develop a conceptual model of potentially important variables of proxy online health information seeking, with a focus on building an agenda for further research. METHODS: We conducted a comprehensive systematic literature review of the PsycINFO, JMIR, and PubMed electronic databases. Studies between January 1994 and June 2018 were considered. The conceptual model was developed using an inductive mixed methods approach based on the investigated variables in the study sample. RESULTS: A total of 33 studies met the inclusion criteria. Findings suggest that parents worldwide are heavy online users of health-related information for their children across highly diverse circumstances. A total of 6 studies found high parental health anxiety, with prevalences ranging from 14% to 52%. Although parents reported wishing for more guidance from their pediatrician on how to find reliable information, they rarely discussed retrieved information from the web. The conceptual model of proxy online health information seeking includes 49 variables. CONCLUSIONS: This systematic review identifies important gaps regarding the influence of health-related information on parents' health behavior and outcomes. Follow-up studies are required to offer parents guidance on how to use the web for health purposes in an effective way, as well as solutions to the multifaceted problems during or after online health information seeking for their child. The conceptual model with the number of studies in each model category listed highlights how previous studies have hardly considered relational variables between the parent and child. An agenda for future research is presented.


Subject(s)
Child Health/standards , Health Behavior/physiology , Information Seeking Behavior/physiology , Parents/psychology , Adolescent , Child , Female , Humans , Male
14.
J Med Internet Res ; 22(4): e16148, 2020 04 15.
Article in English | MEDLINE | ID: mdl-32293571

ABSTRACT

BACKGROUND: People often search the internet to obtain health-related information not only for themselves but also for family members and, in particular, their children. However, for a minority of parents, such searches may become excessive and distressing. Little is known about excessive web-based searching by parents for information regarding their children's health. OBJECTIVE: This study aimed to develop and validate an instrument designed to assess parents' web-based health information searching behavior, the Children's Health Internet Research, Parental Inventory (CHIRPI). METHODS: A pilot survey was used to establish the instrument (21 items). CHIRPI was validated online in a second sample (372/384, 96.9% mothers; mean age 32.7 years, SD 5.8). Item analyses, an exploratory factor analysis (EFA), and correlations with parents' perception of their children's health-related vulnerability (Child Vulnerability Scale, CVS), parental health anxiety (modified short Health Anxiety Inventory, mSHAI), and parental cyberchondria (Cyberchondria Severity Scale, CSS-15) were calculated. A subset of participants (n=73) provided retest data after 4 weeks. CHIRPI scores (total scores and subscale scores) of parents with a chronically ill child and parents who perceived their child to be vulnerable (CVS+; CVS>10) were compared with 2×2 analyses of variances (ANOVAs) with the factors Child's Health Status (chronically ill vs healthy) and perceived vulnerability (CVS+ vs CVS-). RESULTS: CHIRPI's internal consistency was standardized alpha=.89. The EFA identified three subscales: Symptom Focus (standardized alpha=.87), Implementing Advice (standardized alpha=.74) and Distress (standardized alpha=.89). The retest reliability of CHIRPI was measured as rtt=0.78. CHIRPI correlated strongly with CSS-15 (r=0.66) and mSHAI (r=0.39). The ANOVAs comparing the CHIRPI total score and the subscale scores for parents having a chronically ill child and parents perceiving their child as vulnerable revealed the main effects for perceiving one's child as vulnerable but not for having a chronically ill child. No interactions were found. This pattern was observed for the CHIRPI total score (η2=0.053) and each subscale (Symptom Focus η2=0.012; Distress η2=0.113; and Implementing Advice η2=0.018). CONCLUSIONS: The psychometric properties of CHIRPI are excellent. Correlations with mSHAI and CSS-15 indicate its validity. CHIRPI appears to be differentially sensitive to excessive searches owing to parents perceiving their child's health to be vulnerable rather than to higher informational needs of parents with chronically ill children. Therefore, it may help to identify parents who search excessively for web-based health information. CHIRPI (and, in particular, the Distress subscale) seems to capture a pattern of factors related to anxious health-related cognitions, emotions, and behaviors of parents, which is also applied to their children.


Subject(s)
Child Health/standards , Internet/standards , Parents/psychology , Psychometrics/methods , Adult , Child , Female , Humans , Male , Pilot Projects , Reproducibility of Results , Surveys and Questionnaires
15.
Eur Child Adolesc Psychiatry ; 29(5): 649-664, 2020 May.
Article in English | MEDLINE | ID: mdl-31410579

ABSTRACT

There is a lack of current data on help-seeking, and barriers to accessing professional support for child anxiety disorders. This study aimed to provide current data on the frequency and type of parental help-seeking, professional support received, and parent-reported barriers/facilitators in the context of child anxiety, and to explore factors associated with help-seeking, and parent-reported barriers among help-seekers and non help-seekers. We conducted a survey of help-seeking in parents of 222 children (aged 7-11) with elevated anxiety symptoms identified through screening in schools, 138 children of whom met diagnostic criteria for an anxiety disorder. Almost two-thirds (64.5%) of parents of children with an anxiety disorder reported seeking help from a professional; in 38.4% of cases parents reported that their child had received support from a professional to help manage and overcome their anxiety difficulties, and < 3% had received evidence-based treatment (CBT). Frequently reported parental barriers related to difficulties differentiating between developmentally appropriate and clinically significant anxiety, a lack of help-seeking knowledge, perceived negative consequences of help-seeking, and limited service provision. Non-help seekers were more likely than help seekers to report barriers related to thinking a child's anxiety may improve without professional support, and the absence of professional recognition. Findings identify the need for (i) tools for parents and primary school staff to help identify children who may benefit from professional support to overcome difficulties with anxiety; and (ii) increased evidence-based provision for child anxiety disorders, including delivery within schools and direct support for parents.


Subject(s)
Anxiety Disorders/therapy , Child Health/standards , Child , Female , Humans , Male
16.
Eur Child Adolesc Psychiatry ; 29(5): 665-678, 2020 May.
Article in English | MEDLINE | ID: mdl-31414220

ABSTRACT

Despite ample evidence linking particular child temperament characteristics to behavior disorders later in life, there is currently a lack of temperament measures that can be used early, easily, and widely for screening purposes. To redress this gap, the current research aimed at developing a very brief scale of child temperament characteristics that have been found to predict behavior problems over the long term, are represented across models of temperament, and have the potential to exhibit measurement invariance over different countries and childhood periods. The new scale was derived from the Integrative Child Temperament Inventory, a 30-item measure to assess five well-established temperament dimensions, and examined in three studies with samples of children aged between 2 and 8 years across five countries: The United States, the United Kingdom, China, Germany, and Spain (N = 13,425; boys 55.96%). The studies included tests of measurements invariance, of convergent validity with established measures of temperament, and of criterion validity with measures of behavior problems. The scale exhibited full metric invariance and partial scalar invariance across age groups (toddlerhood, preschool, school age) and countries. Test-retest reliability, interrater reliability across teachers, and convergent and criterion validity were adequate. Preliminary data on the measure's clinical utility suggest a favorable balance between brevity and screening accuracy. Altogether, this study suggests that early childhood temperament characteristics placing children at risk for developing behavior problems much later in life can be quickly, effectively, and commensurably assessed across different countries and age groups.


Subject(s)
Child Health/standards , Mental Disorders/psychology , Temperament/physiology , Child , Child, Preschool , China , Europe , Female , Humans , Male , Mass Screening , Risk Factors , Surveys and Questionnaires , United Kingdom
17.
Eur Child Adolesc Psychiatry ; 29(5): 637-648, 2020 May.
Article in English | MEDLINE | ID: mdl-31410578

ABSTRACT

Recent studies have shown that the association between maternal depression and child outcome can be moderated by children's experience of childcare (e.g., daycare) during early childhood (0-5 years). We also know that maternal depression in the child's early years has long-term associations with child development. However, the moderating role of childcare quality on long-term associations between maternal depression and child outcome has not been thoroughly investigated. This article examined longitudinal associations between probable maternal depression (PMD) during early childhood (0-5 years) and childcare quality on children's emotional and behavioral development at the age of 7-8 years (N = 207). Childcare quality was evaluated through observations within the settings. PMD during early childhood was assessed using complementary information from interviews conducted with the mother and current maternal symptoms were assessed using the Center for Epidemiologic Studies Depression Scale. Internalizing and externalizing behaviors were reported by the mother, father and the child at age 7-8 years. Results indicate that when mothers reported clinically relevant depression in early childhood, 7-8-year-old children demonstrate fewer behavioral problems if they attended a higher quality childcare setting. The moderating role of childcare quality remained after considering current maternal depression symptoms. Therefore, it is important to ensure high-quality childcare during early childhood to optimize child development.


Subject(s)
Child Behavior Disorders/psychology , Child Health/standards , Depression/psychology , Emotions/physiology , Maternal Health/standards , Problem Behavior/psychology , Adult , Child , Child Development , Child, Preschool , Female , Humans , Male , Treatment Outcome
18.
J Biosoc Sci ; 52(1): 97-107, 2020 01.
Article in English | MEDLINE | ID: mdl-31104639

ABSTRACT

India is the highest contributor to child anaemia among developing countries. To see the latest picture of child anaemia in India, data for 6- to 59-month-old children were taken from the fourth round of the National Family Health Survey conducted in 2015-16 (NFHS-4). The study sample consisted of 1,37,347 children. The dependent variable was the anaemia status of the child. The objectives of the study were to assess (i) the distribution of anaemia prevalence by child age group, (ii) the prevalence of child anaemia by zone and state and (iii) the relation of child anaemia prevalence with social, demographic and economic variables, including maternal nutritional status and low birth weight. The study found that in India in 2015-16, 56% of 6- to 59-month-old children were anaemic - a decrease of only 13.5 percentage points since the NFHS-3 study conducted in 2005-06. It is well known that iron supplementation is necessary for child growth and brain development. This study suggests that, in addition, the socioeconomic conditions of households in India need to be improved to prevent child anaemia. Low birth weight and low maternal nutritional status are also responsible for the high prevalence of anaemia among children in India.


Subject(s)
Anemia/epidemiology , Child Health/standards , Child, Preschool , Cross-Sectional Studies , Family Characteristics , Female , Health Surveys , Humans , India/epidemiology , Infant , Infant, Low Birth Weight , Male , Maternal Nutritional Physiological Phenomena , Prevalence , Rural Population , Socioeconomic Factors , Urban Population
19.
Comput Inform Nurs ; 38(2): 62-70, 2020 Feb.
Article in English | MEDLINE | ID: mdl-31688092

ABSTRACT

The national Rikshandboken for child healthcare is both a Web-based guideline containing knowledge and methodological guidance and a national child healthcare program in the process of being implemented in Sweden. The aim of this study was to examine child healthcare nurses' use and ways of understanding the national Web-based Rikshandboken. A mixed-methods study with sequential explanatory design in two phases was used; a Web survey with descriptive statistics was followed with telephone interviews with phenomenographic analysis. The study showed variations in use and contributed deeper knowledge of child healthcare nurses' ways of understanding the unit Rikshandboken whose varied parts interact with each other. To be reliable, useful, and relevant for nurses in their specific contexts, Rikshandboken must be kept updated and involve the end users in the development process. With access to technical devices and optimal use of the possibilities of information and communication technology, Rikshandboken can be a resource for continuing learning, a tool in everyday work, and a possible determinant to equality in child healthcare. The study contributes valuable knowledge for the design of Web-based national guidelines for healthcare, making them useful and relevant for the end users.


Subject(s)
Child Health/standards , Guidelines as Topic , Health Knowledge, Attitudes, Practice , Information Technology , Pediatric Nursing , Adult , Child , Female , Humans , Internet , Surveys and Questionnaires , Sweden
20.
Nurs Ethics ; 27(3): 821-837, 2020 May.
Article in English | MEDLINE | ID: mdl-32138577

ABSTRACT

BACKGROUND: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear. OBJECTIVE: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness. DESIGN AND METHODS: A dimensional analysis of articles retrieved from a librarian-assisted systematic review of Scopus, CINAHL, and PsychInfo was conducted, focusing on how children, parents, other family members, and healthcare providers describe parental moral distress, both explicitly through writings on parental moral experience and implicitly through writings on parental involvement in distressing aspects of the child's serious illness. ETHICAL CONSIDERATIONS: To promote child and family best interest and minimize harm, a nuanced understanding of the moral, existential, emotional, and spiritual impact of serious pediatric illness is needed. The cases used in this dimensional analysis come from the first author's IRB approved study at the Children's Hospital of Philadelphia and subsequent published studies; or have been adapted from the literature and the authors' clinical experiences. FINDINGS: Three dimensions emerged from the literature surrounding parent moral distress: an intrapersonal dimension, an interpersonal dimension, and a spiritual/existential dimension. The overarching theme is that parents experience relational solace and distress because of the impact of their child's illness on relationships with themselves, their children, family, healthcare providers, their surrounding communities, and society. DISCUSSION: Elucidating this concept can help nurses and other professionals understand, mitigate, or eliminate antecedents to parental moral distress. We discuss how this model can facilitate future empirical and conceptual bioethics research, as well as inform the manner in which healthcare providers engage, collaborate with, and care for families during serious pediatric illness. CONCLUSION: Parent moral distress is an important and complex phenomenon that requires further theoretical and empirical investigation. We provide an integrated definition and dimensional schematic model that may serve as a starting point for future research and dialogue.


Subject(s)
Critical Illness/psychology , Parents/psychology , Stress, Psychological/etiology , Child , Child Health/standards , Critical Illness/therapy , Female , Humans , Male , Pediatrics/methods , Pediatrics/standards , Stress, Psychological/psychology
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