An interactive health communication application for supporting parents managing childhood long-term conditions: outcomes of a randomized controlled feasibility trial

Background: Families living with chronic or long-term conditions such as chronic kidney disease (CKD), stages 3-5, face multiple challenges and respond to these challenges in various ways. Some families adapt well while others struggle, and family response to a condition is closely related to outcome. With families and professionals, we developed a novel condition-specific interactive health communication app to improve parents’ management ability—the online parent information and support (OPIS) program. OPIS consists of a comprehensive mix of clinical caregiving and psychosocial information and support. Objective: The purpose of this study was to (1) assess feasibility of a future full-scale randomized controlled trial (RCT) of OPIS in terms of recruitment and retention, data collection procedures, and psychometric performance of the study measures in the target population, and (2) investigate trends in change in outcome measures in a small-scale RCT in parents of children with CKD stages 3-5. Methods: Parents were recruited from a pediatric nephrology clinic and randomly assigned to one of two treatment groups: usual support for home-based clinical caregiving (control) or usual support plus password-protected access to OPIS for 20 weeks (intervention). Both groups completed study measures at study entry and exit. We assessed feasibility descriptively in terms of recruitment and retention rates overall; assessed recruitment, retention, and uptake of the intervention between groups; and compared family condition management, empowerment to deliver care, and fathers’ involvement between groups. Results: We recruited 55 parents of 39 children (42% of eligible families). Of those, about three-quarters of intervention group parents (19/26, 73%) and control group parents (22/29, 76%) were retained through completion of 20-week data collection. The overall retention rate was 41/55 (75%). The 41 parents completing the trial were asked to respond to the same 10 questionnaire scales at both baseline and 20 weeks later; 10 scores were missing at baseline and nine were missing at 20 weeks. Site user statistics provided evidence that all intervention group parents accessed OPIS. Analysis found that intervention group parents showed a greater improvement in perceived competence to manage their child’s condition compared to control group parents: adjusted mean Family Management Measure (FaMM) Condition Management Ability Scale intervention group 44.5 versus control group 41.9, difference 2.6, 95% CI -1.6 to 6.7. Differences between the groups in the FaMM Family Life Difficulty Scale (39.9 vs 36.3, difference 3.7, 95% CI -4.9 to 12.2) appeared to agree with a qualitative observation that OPIS helped parents achieve understanding and maintain awareness of the impact of their child’s condition. Conclusions: A full-scale RCT of the effectiveness of OPIS is feasible. OPIS has the potential to beneficially affect self-reported outcomes, including parents’ perceived competence to manage home-based clinical care for children with CKD stage 3-5. Our design and methodology can be transferred to the management of other childhood conditions. Trial Registration: International Standard Randomized Controlled Trial Number (ISRCTN): 84283190; http://www.controlled-trials.com/ISRCTN84283190 (Archived by WebCite at http://www.webcitation.org/6TuPdrXTF)

Learning to Trust: Thoughts from a Law Clinic

The State Bar Legal Education Committee is now the Legal Education and Professional Standards Committee. This marriage seems an apt occasion to raise, through the prism of students, the issue of trust in client relations, though not in the traditional sense of getting the client to trust me. Rather, the more ignored getting me to trust the client is the focus

Section 1: Nuts and Bolts

Workers facing plant closing and permanent or long-term layoffs now have a little more legal protection to give them some time to plan for retraining and to look for new jobs. The Worker Adjustment and Retraining Notification (WARN) Act provides for 60 days advance notice to certain workers affected by a plant closing or mass layoff. This law was passed by the U.S. Congress in 1988 after having been sought for many years by unions and other workers\u27 rights advocates. Vigorous action by the labor movement and strong public support led to passage of the WARN Act in spite of strong employer and corporate opposition. The WARN Act is, unfortunately, not as strong as was originally proposed. It reflects compromises made by Congressional supporters. Yet it does contain significant assurances for certain workers to get advance notice so they can better plan for their working futures. It also represents a starting point for effectively fighting for stronger legal rights for working people. Under the WARN Act, employers who do not comply with the law\u27s provisions may be taken to court by the workers or their Union representatives. (The U.S. Department of Labor has no authority to enforce WARN, but only to issue regulations, so the only enforcement remedy is through the filing of such lawsuits.) Despite the significant strides made by the passage of the WARN Act, there are still many loopholes and ambiguities in the law as it now exists. It is that much more important, therefore, that people be aware of their rights under this law, so that the necessary changes can be made in it. WARN can help workers and their unions mitigate the disastrous effects of a plant closing or mass layoff. WARN also calls for workers to get direct financial compensation, in the form of money damages, attorneys fees and costs, if an employer is found in violation. Here are some useful facts about the WARN Act which highlight the most important aspects of the law. For more information, it is important to consult with: the National Lawyers Guild/Sugar Law Center for Economic & Social Justice, in Detroit, at (313) 962-6540; or the Federation for Industrial Retention & Renewal (FIRR), in Chicago, at (312) 252-7676

Learning to Trust: Thoughts from a Law Clinic

The State Bar Legal Education Committee is now the Legal Education and Professional Standards Committee. This marriage seems an apt occasion to raise, through the prism of students, the issue of trust in client relations, though not in the traditional sense of getting the client to trust me. Rather, the more ignored getting me to trust the client is the focus

Litigator\u27s Thumbnail Guide to the WARN Act

When large companies choose to lay off workers or close down plants without prior notice, they can be subject to extensive liability under the federal Worker Adjustment and Retraining Notification Act (WARN), including 60 days backpay to all affected workers, daily fines to local government, and attorney fees generated during the suit. In the following article, the author presents the bare bones basics of WARN in order for employees and their advocates to understand how and when WARN applies

The WARN ACT

Plant closings are devastating for workers, their families and the communities in which they live. The Worker Adjustment and Retraining Notification Act ( the WARN Act or WARN ) requires some employers to give their workers sixty days\u27 notice before a plant closing or mass layoff. The purpose of the WARN Act is to provide workers with time to seek alternative employment or retraining and to plan for the transition phase after the layoff. The WARN Act does not prevent employers from closing a plant; instead it only requires larger employers to give notice, subject to a number of exceptions and exemptions. It is, however, the primary piece of federal legislation addressing the problem of plant closings and mass layoffs and, in some instances, the only source of rights that dislocated workers have

Litigator\u27s Thumbnail Guide to the WARN Act

When large companies choose to lay off workers or close down plants without prior notice, they can be subject to extensive liability under the federal Worker Adjustment and Retraining Notification Act (WARN), including 60 days backpay to all affected workers, daily fines to local government, and attorney fees generated during the suit. In the following article, the author presents the bare bones basics of WARN in order for employees and their advocates to understand how and when WARN applies

Using small molecules to facilitate exchange of bicarbonate and chloride anions across liposomal membranes

Bicarbonate is involved in a wide range of biological processes, which include respiration, regulation of intracellular pH and fertilization. In this study we use a combination of NMR spectroscopy and ion-selective electrode techniques to show that the natural product prodigiosin, a tripyrrolic molecule produced by microorganisms such as Streptomyces and Serratia, facilitates chloride/bicarbonate exchange (antiport) across liposomal membranes. Higher concentrations of simple synthetic molecules based on a 4,6-dihydroxyisophthalamide core are also shown to facilitate this antiport process. Although it is well known that proteins regulate Cl-/HCO3- exchange in cells, these results suggest that small molecules may also be able to regulate the concentration of these anions in biological systems