Het ontwikkelen en testen van een online ondersteuningsprogramma voor ouders van kinderen met een chronische nierziekte

Development and early testing of an e-support programma for parents of children with chronic kidney disease

Status

Active, not recruiting

Phases

Unknown

Study type

Interventional

Source

NL-OMON

Registry ID

NL-OMON21239

Enrollment

120

Registered

2014-09-23

Start date

2014-10-15

Completion date

Unknown

Last updated

2024-02-28

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

Conditions

Chronic kidney disease (children).

Interventions

Control group = Care as usual = all parents in this study receive the usual care, consisting of regular care and treatment for their child at the Radboud university medical center for paediatric nephr

Eligibility

Inclusion criteria

Inclusion criteria: The parents of children with a chronic kidney disease who receive treatment and care at the Radboud university medical center for paediatric nephrology in Nijmegen. We will include five subgroups of parents of children: 1. in the pre-dialysis stage of the chronic kidney disease, 2. on dialysis, 3. after transplantation, 4. with a hereditary kidney disease, 5. suffering from nephrotic syndrome.

Exclusion criteria

Exclusion criteria: Parents who are not able to speak Dutch

Design outcomes

Primary

Measure	Time frame
We will use five different questionnaires: 1. Parental Stress will be assessed with the Pediatric Inventory for Parents-short form (PIP-SF; Streisand et al. 2001). 2. The child’s quality of life will be assessed using the Dutch version of the Child Vulnerability Scale (Forsyth et al. 1996). 3. Self-management of parents will be assessed with the Dutch version of the Family Management Measure (FAMM; Knafl et al. 2009). 4. Self efficacy in the communication with healthcare professionals will be assessed with the Dutch version of the Perceived Efficacy in Patient- Physician Interactions (PEPPI-5; ten Klooster et al. 2011). 5. Fatigue among parents will be assessed using the Dutch version of the Multidimensional Fatigue Inventory (MFI-20; Smets et al. 1995).	—

Measure

Time frame

We will use five different questionnaires: 1. Parental Stress will be assessed with the Pediatric Inventory for Parents-short form (PIP-SF; Streisand et al. 2001). 2. The child’s quality of life will be assessed using the Dutch version of the Child Vulnerability Scale (Forsyth et al. 1996). 3. Self-management of parents will be assessed with the Dutch version of the Family Management Measure (FAMM; Knafl et al. 2009). 4. Self efficacy in the communication with healthcare professionals will be assessed with the Dutch version of the Perceived Efficacy in Patient- Physician Interactions (PEPPI-5; ten Klooster et al. 2011). 5. Fatigue among parents will be assessed using the Dutch version of the Multidimensional Fatigue Inventory (MFI-20; Smets et al. 1995).

—

Secondary

Measure	Time frame
Process evaluation: We will evaluate the experiences of parents in the intervention group, who can use the e-support program. Dropping out of the support program will be evaluated using a questionnaire	—

Contacts

Public ContactW. Geense

Junior onderzoeker/ PhD candidate IQ healthcare Radboud Universitair Medisch Centrum Postbus 9101

wytske.geense@radboudumc.nl(024) 3616538

Outcome results

None listed

Source: NL-OMON (via WHO ICTRP)