Background Families living with chronic childhood conditions face multiple challenges and parents have previously identified the need for an interactive health communication application (IHCA) to improve their condition management ability. We developed, and evaluated in a feasibility randomised controlled trial the OPIS (online parent information and support) IHCA.
Methods Parents of children with chronic kidney diseases were randomly assigned to usual health–professional support for caregiving (control) or usual support plus password–protected access to OPIS for 20 weeks (intervention). We assessed feasibility descriptively in terms of recruitment and retention rates overall; assessed recruitment, retention, and uptake of OPIS and compared family condition management between groups using the Family Management Measure [FaMM] and qualitative interviews. Questionnaire data were analysed using descriptive statistics and qualitative data using Framework Analysis
Results 55 parents of 39 children were recruited. Three-quarters of intervention group parents (19/26, 73%) and control group parents (22/29, 76%) were retained, 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 baseline and 20 weeks later; 10 scores were missing at baseline and nine were missing at 20 weeks. All intervention group parents accessed OPIS and showed a greater improvement in perceived competence to manage their child’s condition compared to control group parents (adjusted mean FaMM Condition Management Ability Scale, intervention group 44.5 vs control group 41.9, difference 2.6, 95% CI –1.6 to 6.7). Differences between groups agreed with qualitative findings that OPIS improved parents’ management ability.
Conclusions OPIS is being made available as standard practice in the hospital where it was developed and evaluated. A full–scale national trial of the effectiveness of OPIS is feasible. Our design and methodology can be transferred to the management of other conditions in different contexts.
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