The Online Parent Information and Support project

The OPIS (On-line Parent Information and Support) project: meeting mothers' and fathers' information and support needs for home-based management of childhood chronic kidney disease stages 3-5

Status

Active, not recruiting

Phases

Unknown

Study type

Interventional

Source

ISRCTN

Registry ID

ISRCTN84283190

Enrollment

120

Registered

2014-07-25

Start date

2011-12-08

Completion date

Unknown

Last updated

2015-01-13

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Topic: Children, Renal disorders

Interventions

Online parent information and web-based resource. The intervention group received password-protected access to OPIS as well as standard support from the MDT

the control group received standard support only

Eligibility

Sex/Gender

All

Inclusion criteria

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) Inclusion criteria: 1. Child commenced management for CKD

Exclusion criteria

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

Design outcomes

Primary

Measure	Time frame
Family management levels (FaMM) measured at pre- and post-20 weeks accessing the intervention	—

Secondary

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

Countries

United Kingdom

Outcome results

None listed

Source: ISRCTN (via WHO ICTRP) · Data processed: Mar 7, 2026