The Online Parent Information and Support project

Completed

• Conditions: Topic: Children, Renal disorders; Subtopic: All Diagnoses, Renal disorders; Disease: All Diseases; Urological and Genital Diseases

• Registration Number: ISRCTN84283190
• Lead Sponsor: niversity of Manchester (UK)

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Study Start: 2014-07-25
• Last Update Posted: 13 January 2015

Recruitment & Eligibility

• Status: Completed
• Sex: All
• Target Recruitment: 120

Inclusion Criteria

Phase 1:
1. Children aged (0-19 years)
2. Commenced management for CKD in the preceding 5 years and require home-based care
3. (10 South Asian and 30 English)

Parents: of the above
1. New or experienced caregivers
2. Willing to participate
3. Child (if old enough) also willing to participate
4. Have existing home computer and internet access

Professionals (MDT):
1. Currently caring for one of the selected children (hospital or community)
2. Willing to participate

Phase 2:
We will establish a ?virtual? development group comprising four children and four young people with CKD (English and South Asian)

Parents of the above:
1. Two/three representatives of Trust-based and community health professionals
2. Two/three representatives from voluntary sector (e.g., ContactAFamily, NW Region Kidney Patients Association, HealthTalkGroup, Fatherhood Institute, Manchester South Asian Organisation)

Phase 3:
Up to 40 'new' and 'experienced' parental (biological, step or adoptive) caregivers of up to eight South Asian and 32 white children from clinical (up to 20 per group, to allow for a 25% attrition rate)

1. Child commenced management for CKD

Exclusion Criteria

Phase 1:
1. Do not wish to participate
2. Commenced CKD management more than 5 years ago and require home-based care

Parents of the above:
1. No home computer or internet access
2. Child not participating in study
3. Do not wish to participate

Professionals (MDT):
1. Not currently caring for one of the selected children
2. Not willing to participate

Phase 3:
1. Child no longer requires home-based care
2. Do not have home computer and internet access

Study & Design

• Study Type: Interventional
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Family management levels (FaMM) measured at pre- and post-20 weeks accessing the intervention

Secondary Outcome Measures

Name	Time	Method
1. Amount and helpfulness of fathers' involvement in home-based clinical care giving (DADS)<br>2. Family empowerment (FES)<br>3. Rapid Estimate of Adult Literacy (REALM)<br>4. OPIS usage, acceptability and accessibility (USE)