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In September 2000, the Agency for Healthcare Quality and Research and the American Academy of Pediatrics Center for Child Health Research sponsored a meeting of experts and knowledgeable stakeholders to identify 1) the special information needs of pediatric care and 2) health service research questions related to the use of information technology in children's health care. Technologies that support the care of children must address issues related to growth and development, children's changing physiology, and the unique diseases of children and interventions of pediatric care. Connectivity and data integration are particular concerns for child health care workers. Consumer health information needs for this population extend beyond the needs of one individual to the needs of the family. Recommendations of the attendees include rapid implementation of features in electronic health information systems that support pediatric care and involvement of child health experts in policy making, standards setting, education, and advocacy. A proposed research agenda should address both effectiveness and costs of information technology, with special consideration for the needs of children, the development and evaluation of clinical decision support in pediatric settings, understanding of the epidemiology of iatrogenic injury in childhood, supplementation of vocabulary standards with pediatrics-specific terminology, and improvement in health care access for children, using telemedicine.

Background

Searches for health information are among the most common reasons that consumers use the Internet. Both consumers and quality experts have raised concerns about the quality of information on the Web and the ability of consumers to find accurate information that meets their needs.

Objective

To produce a national stakeholder-driven agenda for research, technical improvements, and education that will improve the results of consumer searches for health information on the Internet.

Methods

URAC, a national accreditation organization, and Consumer WebWatch (CWW), a project of Consumers Union (a consumer advocacy organization), conducted a review of factors influencing the results of online health searches. The organizations convened two stakeholder groups of consumers, quality experts, search engine experts, researchers, health-care providers, informatics specialists, and others. Meeting participants reviewed existing information and developed recommendations for improving the results of online consumer searches for health information. Participants were not asked to vote on or endorse the recommendations. Our working definition of a quality Web site was one that contained accurate, reliable, and complete information.

Results

The Internet has greatly improved access to health information for consumers. There is great variation in how consumers seek information via the Internet, and in how successful they are in searching for health information. Further, there is variation among Web sites, both in quality and accessibility. Many Web site features affect the capability of search engines to find and index them.

Conclusions

Research is needed to define quality elements of Web sites that could be retrieved by search engines and understand how to meet the needs of different types of searchers. Technological research should seek to develop more sophisticated approaches for tagging information, and to develop searches that "learn" from consumer behavior. Finally, education initiatives are needed to help consumers search more effectively and to help them critically evaluate the information they find.

The number of health-related websites has proliferated over the past few years. Health information consumers confront a myriad of health related resources on the internet that have varying levels of quality and are not always easy to comprehend. There is thus a need to help health information consumers to bridge the gap between access to information and information understanding—i.e. to help consumers understand health related web-based resources so that they can act upon it. At the same time health information consumers are becoming not only more involved in their own health care but also more information technology minded. One way to address this issue is to provide consumers with tailored information that is contextualized and personalized e.g. directly relevant and easily comprehensible to the person's own health situation. This paper presents a current trend in Consumer Health Informatics which focuses on theory-based design and development of contextualized and personalized tools to allow the evolving consumer with varying backgrounds and interests to use online health information efficiently. The proposed approach uses a theoretical framework of communication in order to support the consumer's capacity to understand health-related web-based resources.

MedCERTAIN (MedPICS Certification and Rating of Trustworthy Health Information on the Net, http://www.medcertain.org/) is a recently launched international project funded under the European Union's (EU) "Action Plan for safer use of the Internet. It provides a technical infrastructure and a conceptual basis for an international system of "quality seals", ratings and self-labelling of Internet health information, with the final aim to establish a "trustmark" for networked health information. Digital "quality seals" are evaluative metadata (using standards such as PICS = Platform for Internet Content Selection, now being replaced by RDF/XML) assigned by trusted third-party raters. The project also enables and encourages self-labelling with descriptive meta-information by web authors. Together these measures will help consumers as well as professionals to identify high-quality information on the Internet. MedCERTAIN establishes a fully functional demonstrator for a self- and third-party rating system enabling consumers and professionals to filter harmful health information and to positively identify and select high quality information. We aim to provide a system which allows citizens to place greater trust in networked information, exemplified in the domain of health information, whilst also making a significant contribution for similar projects with different target domains. The project will demonstrate how PICS-based content rating and filtering technologies can automate and exploit value-adding resource description services. It further proposes standards for interoperability of rating services.

MedCERTAIN (MedPICS Certification and Rating of Trustworthy Health Information on the Net, http://www.medcertain.org/) is a recently launched international project funded under the European Union's (EU) "Action Plan for safer use of the Internet". It provides a technical infrastructure and a conceptual basis for an international system of "quality seals", ratings and self-labelling of Internet health information, with the final aim to establish a global "trustmark" for networked health information. Digital "quality seals" are evaluative metadata (using standards such as PICS=Platform for Internet Content Selection, now being replaced by RDF/XML) assigned by trusted third-party raters. The project also enables and encourages self-labelling with descriptive metainformation by web authors. Together these measures will help consumers as well as professionals to identify high-quality information on the Internet. MedCERTAIN establishes a fully functional demonstrator for a self- and third-party rating system enabling consumers and professionals to filter harmful health information and to positively identify and select high quality information. We aim to provide a trustmark system which allows citizens to place greater confidence in networked information, to encourage health information providers to follow best practices guidelines such as the Washington eHealth Code of Ethics, to provide effective feedback and law enforcement channels to handle user complaints, and to stimulate medical societies to develop standard for patient information. The project further proposes and identifies standards for interoperability of rating and description services (such as libraries or national health portals) and fosters a worldwide collaboration to guide consumers to high-quality information on the web.

Background: Improving the safety, quality, and efficiency of health care will require immediate and ubiquitous access to complete patient information and decision support provided through a National Health Information Infrastructure (NHII).

Methods: To help define the action steps needed to achieve an NHII, the U.S. Department of Health and Human Services sponsored a national consensus conference in July 2003.

Results: Attendees favored a public–private coordination group to guide NHII activities, provide education, share resources, and monitor relevant metrics to mark progress. They identified financial incentives, health information standards, and overcoming a few important legal obstacles as key NHII enablers. Community and regional implementation projects, including consumer access to a personal health record, were seen as necessary to demonstrate comprehensive functional systems that can serve as models for the entire nation. Finally, the participants identified the need for increased funding for research on the impact of health information technology on patient safety and quality of care. Individuals, organizations, and federal agencies are using these consensus recommendations to guide NHII efforts.

As the emphasis on individuals' active partnership in health care grows, so does the public's need for effective, comprehensible consumer health resources. Consumer health informatics has the potential to provide frameworks and strategies for designing effective health communication tools that empower users and improve their health decisions. This article presents an overview of the consumer health informatics field, discusses promising approaches to supporting health communication, and identifies challenges plus direction for future research and development. The authors' recommendations emphasize the need for drawing upon communication and social science theories of information behavior, reaching out to consumers via a range of traditional and novel formats, gaining better understanding of the public's health information needs, and developing informatics solutions for tailoring resources to users' needs and competencies. This article was written as a scholarly outreach and leadership project by members of the American Medical Informatics Association's Consumer Health Informatics Working Group.

Background

Social marketing campaigns offer a promising approach to the prevention of childhood obesity. Change4Life (C4L) is a national obesity prevention campaign in England. It included mass media coverage aiming to reframe obesity into a health issue relevant to all and provided the opportunity for parents to complete a brief questionnaire (‘How are the Kids’) and receive personalised feedback about their children’s eating and activity. Print and online C4L resources were available with guidance about healthy eating and physical activity. The study aims were to examine the impact of personalised feedback and print material from the C4L campaign on parents’ attitudes and behaviours about their children’s eating and activity in a community-based cluster-randomised controlled trial.

Methods

Parents of 5–11 year old children were recruited from 40 primary schools across England. Schools were randomised to intervention or control (‘usual care’). Basic demographic data and brief information about their attitudes to their children’s health were collected. Families in intervention schools were mailed the C4L print materials and the ‘How are the Kids’ questionnaire; those returning the questionnaire were sent personalised feedback and others received generic materials. Outcomes included awareness of C4L, attitudes to the behaviours recommended in C4L, parenting behaviours (monitoring and modelling), and child health behaviours (diet, physical activity and television viewing). Follow-up data were collected from parents by postal questionnaire after six months. Qualitative interviews were carried out with a subset of parents (n = 12).

Results

3,774 families completed baseline questionnaires and follow-up data were obtained from 1,419 families (37.6%). Awareness was high in both groups at baseline (75%), but increased significantly in the intervention group by follow-up (96% vs. 87%). Few parents (5.2% of the intervention group) returned the questionnaire to get personalised feedback. There were few significant group differences in parental attitudes or parenting and child health behaviours at follow-up. Physical activity was rated as less important in the intervention group, but a significant group-by-socioeconomic status (SES) interaction indicated that this effect was confined to higher SES families. Similar interactions were also seen for physical activity monitoring and child television time; with adverse effects in higher SES families and no change in the lower SES families. Effects were little better in families that completed the questionnaire and received personalised feedback. At interview, acceptability of the intervention was modest, although higher in lower SES families.

Conclusions

The C4L campaign materials achieved increases in awareness of the campaign, but in this sample had little impact on attitudes or behaviour. Low engagement with the intervention appeared a key issue.

Trial registration number

Current Controlled Trials ISRCTN00791709.

OBJECTIVE: To describe the rationale, development, content, and results of the AHSR-sponsored conference on developing a research agenda focused on improving the quality of care for children. DATA SOURCES AND METHODS: Planning documents, background papers, and conference proceedings. PRINCIPAL FINDINGS: The conference developed the research agenda focused on (1) monitoring the health of children; (2) evaluating the efficacy and effectiveness of health services for children; (3) assessing the quality of healthcare provided to children; (4) improving the quality of healthcare within health systems; (5) assessing the performance of community systems for children; (6) exploring the impact of different financial incentives on the provision of pediatric healthcare; and (7) developing and disseminating clinical practice guidelines and other information to physicians, families, and consumers. Specific issues and research questions in each area are also presented. Strategies for implementing the research agenda are presented and include: (1) expanding the child health services research workforce; (2) developing child healthcare quality improvement research centers; (3) conducting research in specific high-priority areas; (4) focusing research on improving the health of vulnerable populations; (5) improving child health data and collection systems at the national level; (6) developing better community health monitoring for children; (7) building and supporting research networks and a consortium of research users; and (8) developing a coordinated interagency federal effort to advance this agenda and to provide accountability for its completion. CONCLUSION: The proposed research agenda should be a national priority so that all Americans can be assured that children are receiving the best quality of care that the United States can provide.

Children are important consumers of health care, yet neither children nor their clinical practitioners have received much attention from the health informatics community. Child health needs differ from those of adults, and the purpose of health encounters for children focus to a greater extent on health promotion and evaluation of developmental milestones. The early childhood period is critical because it is during this time the children develop the expectations and attitudes about health care that they will carry with them throughout their lives. The primary purpose of this project is to examine the congruence in communication between children and pediatric practitioners. From this examination implications will be drawn for designing pediatric clinical records and developing strategies for determining the extent to which the record serve the child's health information needs and the clinician's health service delivery needs.

MedCIRCLE (www.medcircle.info) is a semantic web project to develop and promote technologies able to guide consumers to trustworthy health information on the Internet and to establish a global web of trust for networked health information. Gateway sites for consumer health information (CisMEF, AQUMED, Certified Medical Web Site Seal of METGES online) will use HIDDEL metadata (Health Information Disclosure, Description and Evaluation Language, expressed in XML/RDF Syntax) to make their annotation and evaluation data machine-processable and accessible for software-agents. Other health subject gateways, accreditation, or rating services are invited to join the collaboration by implementing HIDDEL on their gateways. Expressing self-descriptive or third-party evaluations a machine-processable format allows intelligent agents or client-side software to harvest statements and opinions about the trustworthiness of other websites and assist users in selecting trustworthy websites. The MedCIRCLE project builds on, expands and continues work on rating health information on the Internet piloted within the MedCERTAIN project. While MedCERTAIN provided the core technologies and software for rating and “trustmarking” health information, MedCIRCLE is built around these technologies and involves a wider medical community to assess health information, demonstrating the power of collaborative and interoperable evaluations on the world-wide-web. Other specific aims include refinement and expansion of HIDDEL, to become a standard vocabulary and interchange format for self- and third-party ratings of health information.

Purpose

The purpose of this focused ethnographic study was to explore the quality of life (QOL) of school-age heart-transplant recipients.

Design and Methods

Semi-structured interviews were conducted with 11 parent-child dyads. Data were analyzed using content analysis and constant comparison.

Results

Participants identified key factors impacting the children’s QOL including: participation in normal activities, normalcy, staying healthy, sources of strength and support, and struggles (parents’ perspectives) and doing what kids do, being with family and friends, and being a heart transplant kid (children’s perspectives).

Practice Implications

Interventions focusing on the key factors identified by participants may impact the QOL of school-age heart-transplant recipients.

Background

Preventive child health care is well suited for the early detection of parenting and developmental problems. However, as far as the younger age group is concerned, there are no validated early detection instruments which cover both the child and its environment. Therefore, we have developed a broad-scope structured interview which assesses parents’ concerns and their need for support, using both the parental perspective and the experience of the child health care nurse: the Structured Problem Analysis of Raising Kids (SPARK). This study reports the psychometric characteristics of the SPARK.

Method

A cross-sectional study of 2012 18-month-old children, living in Zeeland, a province of the Netherlands. Inter-rater reliability was assessed in 67 children. Convergent validity was assessed by comparing SPARK-domains with domains in self-report questionnaires on child development and parenting stress. Discriminative validity was assessed by comparing different outcomes of the SPARK between groups with different levels of socio-economic status and by performing an extreme-groups comparison. The user experience of both parents and nurses was assessed with the aid of an online survey.

Results

The response rate was 92.1% for the SPARK. Self-report questionnaires were returned in the case of 66.9% of the remaining 1721 children. There was selective non-reporting: 33.1% of the questionnaires were not returned, covering 65.2% of the children with a high-risk label according to the SPARK (p < 0.001). Inter-rater reliability was good to excellent with intraclass correlations between 0.85 and 1.0 for physical topics; between 0.61 and 0.8 for social-emotional topics and 0.92 for the overall risk assessment. Convergent validity was unexpectedly low (all correlations ≤0.3) although the pattern was as expected. Discriminative validity was good. Users were satisfied with the SPARK and identified some topics for improvement.

Conclusion

The SPARK discriminates between children with a high, increased and low risk of parenting and developmental problems. It does so in a reliable way, but more research is needed on aspects of validity and in other populations.

Background

The recent surge in online health information and consumer use of such information has led to expert speculations and prescriptions about the credibility of health information on the World Wide Web. In spite of the growing concern over online health information sources, existing research reveals a lacuna in the realm of consumer evaluations of trustworthiness of different health information sources on the Internet.

Objective

This study examines consumer evaluation of sources of health information on the World Wide Web, comparing the demographic, attitudinal, and cognitive differences between individuals that most trust a particular source of information and individuals that do not trust the specific source of health information. Comparisons are made across a variety of sources.

Methods

The Porter Novelli HealthStyles database, collected annually since 1995, is based on the results of nationally-representative postal-mail surveys. In 1999, 2636 respondents provided usable data for the HealthStyles database. Independent sample t tests were conducted to compare the respondents in the realm of demographic, attitudinal, and cognitive variables.

Results

The most trusted sources of online health information included the personal doctor, medical university, and federal government. The results demonstrated significant differences in demographic and health-oriented variables when respondents who trusted a particular online source were compared with respondents that did not trust the source, suggesting the need for a segmented approach to research and application. Individuals trusting the local doctor were younger ( t 2634= 4.02, P< .001) and held stronger health beliefs (F 1= 5.65, P= .018); individuals trusting the local hospital were less educated ( t 2634= 3.83, P< .001), low health information oriented (F 1= 6.41, P= .011), and held weaker health beliefs (F 1= 5.56, P= .018). Respondents with greater trust in health insurance companies as online health information sources were less educated ( t 2634= 1.90, P= .05) and less health information oriented (F 1= 4.30, P= .04). Trust in medical universities was positively associated with education ( t 2634= 11.83, P< .001), income ( t 2634= 10.19, P< .001), and health information orientation (F 1= 10.32, P<.001). Similar results were observed in the realm of federal information credibility, with individuals with greater trust in federal sources being more educated ( t 2634= 7.45, P< .001) and health information oriented (F 1= 4.45, P= .04) than their counterparts.

Conclusions

The results suggest systematic differences in the consumer segment based on the different sources of health information trusted by the consumer. While certain sources such as the local hospital and the health insurance company might serve as credible sources of health information for the lower socioeconomic and less health-oriented consumer segment, sources such as medical universities and federal Web sites might serve as trustworthy sources for the higher socioeconomic and more health-oriented groups.

Objective: To evaluate Safe Kids Week 2001—a national public awareness campaign on scald and burn prevention—run by Safe Kids Canada.

Design: Random digit dial telephone survey.

Setting: Canada.

Subjects: Parents or guardians of children under 9 years. Two groups of parents were compared, those "exposed" to the campaign (defined as having "seen, heard, or read anything about scald and burn prevention during the period 28 May to 3 June 2001") and those "unexposed" to the campaign.

Intervention: Burn safety information was disseminated via the media, 5000 retail stores, and 348 community partners across Canada. The campaign emphasized four key messages: (1) Lower your water temperature, hot tap water could burn your child! (2) Make sure your child is safe in the kitchen. (3) Keep hot drinks away from your child. (4) Check your smoke alarms regularly.

Outcome measures: Change in parental knowledge and behavior.

Results: A total of 29 871 telephone numbers were called, with a household refusal rate of 27%. Nationally, 14% of parents were exposed to the campaign and 504 parents were interviewed, 251 in the "exposed" group and 253 in the "unexposed" group. Parents exposed to Safe Kids Week 2001 were 1.5–5 times more likely to be aware of key campaign messages, and 2–3 times more likely to test and lower the water heater temperature, compared with unexposed parents.

Conclusion: Safe Kids Week 2001 reached a significant proportion of parents of young children. In addition, the campaign appeared to increase burn safety knowledge and lead to behavior changes among exposed parents, compared with unexposed parents.

Background

Tobacco smoke exposure (TSE) is a serious threat to child health. Roughly 40% of children worldwide are exposed to tobacco smoke, and the very young are often "captive smokers" in homes in which others smoke.

The goal of this research project is to develop and evaluate an intervention to reduce young child tobacco smoke exposure. The objective of this paper is to document our approach to building the intervention, to describe the planned intervention, and to explore the conceptual issues regarding the intervention and its evaluation.

Methods/Design

This project is being developed using an iterative approach. We are currently in the middle of Stage 1. In this first stage, Intervention Development, we have already conducted a comprehensive search of the professional literature and internet resources, consulted with experts in the field, and conducted several Design Workshops. The planned intervention consists of parental group support therapy, a website to allow use of an "online/offline" approach, involvement of pediatricians, use of a video simulation game ("Dr. Cruz") to teach parents about child TSE, and personalized biochemical feedback on exposure levels. As part of this stage we will draw on a social marketing approach. We plan to use in-depth interviews and focus groups in order to identify barriers for behavior change, and to test the acceptability of program components.

In Stage II, we plan to pilot the planned intervention with 5-10 groups of 10 parents each.

In Stage III, we plan to implement and evaluate the intervention using a cluster randomized controlled trial with an estimated 540 participants.

Discussion

The major challenges in this research are twofold: building an effective intervention and measuring the effects of the intervention. Creation of an effective intervention to protect children from TSE is a challenging but sorely needed public health endeavor. We hope that our approach will contribute to building a stronger evidence base for control of child exposure to tobacco smoke.

Trial registration

ClinicalTrials.gov Identifier: NCT01335178

Background

The quantum increases in home Internet access and available online health information with limited control over information quality highlight the necessity of exploring decision making processes in accessing and using online information, specifically in relation to children who do not make their health decisions. The aim of this study was to understand the processes explaining parents’ decisions to use online health information for child health care.

Methods

Parents (N = 391) completed an initial questionnaire assessing the theory of planned behaviour constructs of attitude, subjective norm, and perceived behavioural control, as well as perceived risk, group norm, and additional demographic factors. Two months later, 187 parents completed a follow-up questionnaire assessing their decisions to use online information for their child’s health care, specifically to 1) diagnose and/or treat their child’s suspected medical condition/illness and 2) increase understanding about a diagnosis or treatment recommended by a health professional.

Results

Hierarchical multiple regression showed that, for both behaviours, attitude, subjective norm, perceived behavioural control, (less) perceived risk, group norm, and (non) medical background were the significant predictors of intention. For parents’ use of online child health information, for both behaviours, intention was the sole significant predictor of behaviour. The findings explain 77% of the variance in parents’ intention to treat/diagnose a child health problem and 74% of the variance in their intentions to increase their understanding about child health concerns.

Conclusions

Understanding parents’ socio-cognitive processes that guide their use of online information for child health care is important given the increase in Internet usage and the sometimes-questionable quality of health information provided online. Findings highlight parents’ thirst for information; there is an urgent need for health professionals to provide parents with evidence-based child health websites in addition to general population education on how to evaluate the quality of online health information.

While clinical medicine is often well-supported by health system information technology infrastructure, clinical research may need to create strategies to use clinical medicine informational technology tools. The authors describe a medication safety initiative that was carried out in a National Institutes of Health (NIH) Clinical and Translational Science Award (CTSA)-sponsored clinical research environment. A Web-based, medical informatics application was designed and implemented which allowed research groups to build protocol-specific, electronic medication templates that were subsequently used to create participant-specific medication order sets for conductance of clinical research activities in the CTSA-sponsored clinical research environment. The medical informatics initiative eliminated typewritten or handwritten medication orders, created research protocol-specific templates meeting institutional order-writing requirements, and formalized a rigorous review and approval process. Enhancing safety in medication ordering and prescribing practices in a clinical research environment provided the background for multi-disciplinary cooperation in medical informatics.

OBJECTIVE: To summarize the concept of child health and the measurement of child health status in order to help guide the evaluation of the effectiveness of medical, social, and policy programs. CONCLUSIONS: Opportunities for research on children's health status and quality of care abound. Comprehensive and functional definitions create problems of measurement, but investigators are making progress in measuring children's health status both generically and for specific chronic health conditions. RECOMMENDATIONS: Measures of child health need to be developed, improved, tested, and made user-friendly for clinical and policy research. The relationship between health status and a variety of social programs for children and families needs study. The impact of changes in healthcare organization and financing must be investigated, especially for children from vulnerable subgroups. Determining the value and effectiveness of preventive services is a pressing issue. It is crucial to understand better the link among quality of care; other factors biological, family, and social; and children's health status.

Background

Caring for a child with a chronic condition, such as sickle cell disease, can have a significant impact on parents and families. In order to provide comprehensive care and support to these families, psychometrically sound instruments are needed as an initial step in measuring the impact of chronic diseases on parents and families. We sought to evaluate the psychometric properties of the PedsQL™ Family Impact Module in populations of children with and without sickle cell disease. In addition, we sought to determine the correlation between parent's well being and their proxy report of their child's health-related quality of life (HRQL).

Methods

We conducted a cross-sectional study of parents of children with and without sickle cell disease who presented to an urban hospital-based sickle cell disease clinic and an urban primary care clinic. We assessed the HRQL and family functioning of both groups of parents utilizing the PedsQL™ Family Impact Module. The reliability, validity and factor structure of the instrument were determined and scores from the instrument were correlated with scores from parent-proxy report of their child's HRQL using the PedsQL™ 4.0 Generic Core Scales.

Results

Parents of 170 children completed the module (97 parents of children with sickle cell disease and 73 parents of children without sickle cell disease). The Family Impact Module had high ceiling effects but was reliable (Cronbach's alpha > 0.80 in all scales). The empirical factor structure was generally consistent with the theoretical factor structure and supported construct validity. The Family Impact Module discriminated between parents of children with severe sickle cell disease from parents of children with mild disease or no disease in the areas of communication and worry. There were no significant differences across any of the subscales between parents of children with mild sickle cell disease and those with no disease. Parents with higher scores, representing better HRQL and family functioning, generally reported higher HRQL scores for their children.

Conclusion

The PedsQL™ Family Impact module was reliable, however it displayed large ceiling effects and did not discriminate well between parents of children with and without sickle cell disease. Future research to evaluate the psychometric properties of the Family Impact Module for parents of healthy children may be helpful.

Purpose

To examine information that parents of children with life-limiting conditions want to discuss with children’s physicians to assist decision-making, and whether the desire for this information is associated with parents’ trust in physicians.

Study design

A cross-sectional study using a telephone survey.

Patients and methods

Subjects comprised a random sample of 266 parents whose children were enrolled in Florida’s Medicaid Program. Parents were asked if they wanted to discuss information related to their children’s treatment, including quality of life (QOL), pain relief, spiritual beliefs, clinical diagnosis/laboratory data, changes in the child’s behavior due to treatment, changes in the child’s appearance due to treatment, chances of recovery, and advice from the physician and family/friends. The Wake Forest Physician Trust Scale was used to measure parents’ trust in physicians. We tested the relationships between parents’ age, race/ethnicity, education, parent-reported children’s health status, and the desired information. We also tested whether the desire for information was associated with greater trust in physicians.

Results

Most parents wanted information on their children’s QOL (95%), followed by chance of recovery (88%), and pain relief (84%). Compared with nonHispanic whites, nonHispanic blacks and Hispanics showed a greater desire for information and a chance to discuss QOL information had greater trust in their children’s physicians than other information after adjusting for covariates (P < 0.05).

Conclusions

Among children with life-limiting conditions, QOL is the most frequently desired information that parents would like to receive from physicians as part of shared decision-making. Parents’ desire for QOL information is associated with greater trust in their children’s physicians.

Purpose:

To examine information that parents of children with life-limiting conditions want to discuss with children’s physicians to assist decision-making, and whether the desire for this information is associated with parents’ trust in physicians.

Study design:

A cross-sectional study using a telephone survey.

Patients and methods:

Subjects comprised a random sample of 266 parents whose children were enrolled in Florida’s Medicaid Program. Parents were asked if they wanted to discuss information related to their children’s treatment, including quality of life (QOL), pain relief, spiritual beliefs, clinical diagnosis/laboratory data, changes in the child’s behavior due to treatment, changes in the child’s appearance due to treatment, chances of recovery, and advice from the physician and family/friends. The Wake Forest Physician Trust Scale was used to measure parents’ trust in physicians. We tested the relationships between parents’ age, race/ethnicity, education, parent-reported children’s health status, and the desired information. We also tested whether the desire for information was associated with greater trust in physicians.

Results:

Most parents wanted information on their children’s QOL (95%), followed by chance of recovery (88%), and pain relief (84%). Compared with nonHispanic whites, nonHispanic blacks and Hispanics showed a greater desire for information and a chance to discuss QOL information had greater trust in their children’s physicians than other information after adjusting for covariates (P < 0.05).

Conclusions:

Among children with life-limiting conditions, QOL is the most frequently desired information that parents would like to receive from physicians as part of shared decision-making. Parents’ desire for QOL information is associated with greater trust in their children’s physicians.

Descriptive information was obtained about homeless families in the Intermountain West and their children's health care needs were defined to help professionals develop programs tailored to meet the unique needs of this population. We collected data during the well-child visits of 306 children in 161 families living at the Travelers Aid Society family shelter. The results reveal 2 types of homeless families, episodic and long term. Each requires different levels of assistance. This study's profile of mobile, predominantly white, 2-parent families with few children (mean of 1.2) differs considerably from that of studies conducted on the East and West coasts. The families' nomadic life-style (73.1% came from 32 states other than Utah) present important public health issues, especially because of the recent resurgence of tuberculosis and declining levels of childhood immunizations. The children's health problems were similar to those reported nationally: delayed immunizations, dental decay, anemia, and impaired vision.

Background

Childhood obesity is one of the most pressing health issues of our time. Key health organizations have recommended research be conducted on the effectiveness of well-designed interventions to combat childhood obesity that can be translated into a variety of settings. This paper describes the design and methods used in the Hunter Illawarra Kids Challenge Using Parent Support (HIKCUPS) trial, an ongoing multi-site randomized controlled trial, in overweight/obese children comparing the efficacy of three interventions: 1) a parent-centered dietary modification program; 2) a child-centered physical activity skill-development program; and 3) a program combining both 1 and 2 above.

Methods/Design

Each intervention consists of three components: i) 10-weekly face-to-face group sessions; ii) a weekly homework component, completed between each face-to-face session and iii) three telephone calls at monthly intervals following completion of the 10-week program. Details of the programs' methodological aspects of recruitment, randomization and statistical analyses are described here a priori.

Discussion

Importantly this paper describes how HIKCUPS addresses some of the short falls in the current literature pertaining to the efficacy of child obesity interventions.

The HIKCUPS trial is funded by the National Medical Research Council, Australia.

The role of a medical librarian includes guiding consumers to search for information related to specific health needs and interpret information for personal use. Little is known about barriers to accessing health information and clinical services for those with cognitive and physical disabilities. The purpose of this paper is to describe a statewide needs assessment of the health information and services needs of individuals with disabilities and their caregivers.

Data from the needs assessment conducted by the Health Services Training Project of more than 1,000 respondents indicate unmet needs for outreach to increase effective use of library and information resources. Fewer consumers and their caregivers utilized the Internet to search for health information as compared to clinical service providers and students in health professions. A majority of consumers reported difficulty obtaining and understanding online health information. Service providers and students shared concerns about information quality. Consumers and caregivers expressed highest levels of trust in information provided by service providers, nonprofit health agencies, reference books, and libraries.