Extrait

Background and study aims Children and young people with chronic kidney disease (CKD) are happier at home, so when possible medical professionals teach and support parents to deliver home-based clinical care. In previous research, parents of children with CKD gave skilled care at home such as administering complex medications and injections, monitoring diet/fluids, and communicating clinical changes to medical professionals. Parents identified a need for reliable, continuously available, online materials to supplement (not replace) existing professional support and to empower them, particularly when professionals are less accessible, e.g. night-time. The aim of our study is to evaluate the impact of On-line Parent Information and Support (OPIS) use over 20 weeks on the extent to which parents perceive themselves empowered to care for their child’s CKD, and test procedures for a later national trial. Who can participate? Parents of children and young people up to 19 years of age with CKD whose care is managed by the multidisciplinary team (MDT) in the kidney unit in one children’s hospital in the North of England. What does the study involve? Participants were randomly allocated into two groups. One group (the control group) received standard support and information to support home-based clinical care-giving from the MDT. The other group (the OPIS group) received usual support plus password-protected access to OPIS for 20 weeks. Both groups completed questionnaires at the start and end of the trial to compare family condition management, whether parents felt empowered to deliver care, and the amount and helpfulness of fathers’ involvement between groups. What are the possible benefits and risks of participating? We anticipate that parents using OPIS will report improved empowerment. Whilst creating online resources for and with parents of children with CKD the study may also inform care/research in other conditions. By taking part in the study there are no risks of physical injury or harm. Increased levels of anxiety could result from talking about home-based care-giving but a Clinical Psychologist was available to provide support if needed. However, in previous studies parents have often described a positive therapeutic benefit of taking part in research that could improve the experience of other parents. Where is the study run from? The University of Manchester (UK). When is the study starting and how long is it expected to run for? The study started in September 2012 and ran for 12 months. Who is funding the study? The National Institute for Health Research, Research for Patient Benefit Programme (UK). Who is the main contact? Dr Veronica Swallow [email protected]

Critère d'inclusion

• Topic: Children, Renal disorders; Subtopic: All Diagnoses, Renal disorders; Disease: All Diseases

Liens

• ictrp
• isrctn