Abstract
BackgroundType 1 diabetes demands a complicated disease self-management by child and parents. The overwhelming task of combining every day parenting tasks with demands of taking care of a child with diabetes can have a profound impact on parents, often resulting in increased parenting stress. Tailored disease information, easy accessible communication with healthcare professionals and peer support are found to support parents to adequately cope with the disease and the disease self-management in everyday life. Internet can help facilitate these important factors in usual pediatric diabetes care. Therefore, we will develop a web-based patient portal in addition to usual pediatric diabetes care and subsequently evaluate its efficacy and feasibility. The web-based patient portal, called Sugarsquare, provides online disease information, and facilitates online parent-professional communication and online peer support. We hypothesize that parenting stress in parents of a child with type 1 diabetes will decrease by using Sugarsquare and that Sugarsquare will be feasible in this population.Methods/DesignWe will test the hypotheses using a multicenter randomized controlled trial. Eligible participants are parents of a child with type 1 diabetes under the age of 13. Parents are excluded when they have no access to the internet at home or limited comprehension of the Dutch language. Participants are recruited offline from seven clinics in the Netherlands. Participants are randomly allocated to an intervention and a control group. The intervention group will receive access to the intervention during the twelve-month study-period; the control group will receive access in the last six months of the study-period. Self-reported parenting stress is the primary outcome in the present study. Data will be gathered at baseline (T0) and at six (T1) and twelve (T2) months following baseline, using online questionnaires. User statistics will be gathered throughout the twelve-month study-period for feasibility.DiscussionDependent on its feasibility and efficacy, the intervention will be implemented into usual pediatric diabetes care. Strengths and limitations of the study are discussed.Trial registrationNTR3643 (Dutch Trial Register)
Highlights
Type 1 diabetes demands a complicated disease self-management by child and parents
Dependent on its feasibility and efficacy, the intervention will be implemented into usual pediatric diabetes care
This paper describes the protocol for a multicenter randomized controlled trial, by which the efficacy and feasibility of a web-based patient portal will be evaluated, in a population of parents of a child with Type 1 diabetes (T1D)
Summary
Type 1 diabetes demands a complicated disease self-management by child and parents. The overwhelming task of combining every day parenting tasks with demands of taking care of a child with diabetes can have a profound impact on parents, often resulting in increased parenting stress. We will develop a web-based patient portal in addition to usual pediatric diabetes care and subsequently evaluate its efficacy and feasibility. The web-based patient portal, called Sugarsquare, provides online disease information, and facilitates online parent-professional communication and online peer support. Parents of young children with diabetes can show elevated levels of stress, anxiety and depressed mood [8,9], which can lead to an increase in conflicts within the family, and depressed mood and poor self management skills in the child [7,9,10,11]. As to use a more standardized measure, Bowen and colleagues [51] suggest focusing on several areas of feasibility of an intervention: Outcome Measure Primary outcome
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