NCT03800459

Brief Summary

Parents of children with cystic fibrosis (CF) experience high levels of stress and problems. Family empowerment interventions provide important support for many patients with CF and their families. However,there is a lack of research exploring the effects of such empowerment programs on coping, and Problem Solving among parents, and Quality of Life in Children with CF. The present study aimed to assess the effect of a family empowerment program-based nursing intervention on parents coping with stress and problem solving, and quality of life children with CF.

Trial Health

87
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
48

participants targeted

Target at P25-P50 for not_applicable

Timeline
Completed

Started Dec 2016

Shorter than P25 for not_applicable

Geographic Reach
1 country

1 active site

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Start

First participant enrolled

December 14, 2016

Completed
2 months until next milestone

Primary Completion

Last participant's last visit for primary outcome

February 26, 2017

Completed
3 months until next milestone

Study Completion

Last participant's last visit for all outcomes

June 2, 2017

Completed
1.6 years until next milestone

First Submitted

Initial submission to the registry

December 28, 2018

Completed
14 days until next milestone

First Posted

Study publicly available on registry

January 11, 2019

Completed
Last Updated

January 11, 2019

Status Verified

January 1, 2019

Enrollment Period

2 months

First QC Date

December 28, 2018

Last Update Submit

January 10, 2019

Conditions

Keywords

Children with Cystic FibrosisParentsQuality of LifeCoping with StressProblem Solvingfamily empowerment programNursing

Outcome Measures

Primary Outcomes (1)

  • Child and parents information form

    The form was developed to define baseline characteristics and was based on previous literature. The questionnaire included questions regarding the sociodemographic characteristics of the participants, such as age, gender, educational level, income, duration of treatment and diagnosis.

    3 weeks

Secondary Outcomes (3)

  • Problem Solving Inventory (PSI)

    10 weeks

  • Scale of Ways of Coping with Stress (SWCS)

    10 weeks

  • The Cystic Fibrosis Questionnaire-Revised (CFQ-R)

    10 weeks

Study Arms (2)

Experimental: Intervention group

EXPERIMENTAL

Experimental: Intervention group

Behavioral: family empowerment program

Control:no intervation group

NO INTERVENTION

Control:no intervation group

Interventions

The empowerment program-nursing interventions were given in 6 sessions in the experimental group Session 1: Individualized training: General information about CF, respiratory system involvement and treatment process, airway cleaning in CF, drug applications (45-50 min) Session 2:Phone calls: Motivational and reminder interviews were carried out in order to reinforce the content of the first individual training (15 min).Session 3:Phone calls:Motivational and reminder interviews were carried out in order to reinforce the content of the first individual training (15 min) Session 4:Individualized training:protection from infections, nutrition and psychosocial support (45 min) Session 5:Phone calls: Motivational and reminder interviews were carried out in order to reinforce the content of the second individual training. (10 min) Session 6:Phone calls: Motivational and reminder interviews were carried out in order to reinforce the content of the second individual training. (10 min)

Experimental: Intervention group

Eligibility Criteria

Age6 Years - 18 Years
Sexall
Healthy VolunteersYes
Age GroupsChild (0-17), Adult (18-64)

You may qualify if:

  • Children aged 6-18 years old;
  • Pulmonary functions Forced Expiratory Volume (FEV 1) over 40%
  • being able to communicate in Turkish,
  • voluntary parents in the study.

You may not qualify if:

  • had mental disorders;
  • receiving mechanical ventilation;
  • Being in the process of lung transplantation;
  • having a sister/brother who died due to CF
  • Being in enteral or parenteral feeding;
  • having a chronic disease other than CF.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

Selcuk University

Konya, Eyalet/Yerleşke, 42200, Turkey (Türkiye)

Location

Related Publications (1)

  • Donmez H, Tas Arslan F. The Effectiveness of a Parent Empowerment Intervention for Caregivers of Children with Cystic Fibrosis: A Randomized Controlled Trial. Compr Child Adolesc Nurs. 2024 Dec;47(4):267-283. doi: 10.1080/24694193.2024.2411986. Epub 2024 Oct 9.

MeSH Terms

Conditions

Cystic Fibrosis

Condition Hierarchy (Ancestors)

Pancreatic DiseasesDigestive System DiseasesLung DiseasesRespiratory Tract DiseasesGenetic Diseases, InbornCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesInfant, Newborn, Diseases

Study Officials

  • Fatma Tas Arslan

    Selcuk University

    STUDY DIRECTOR

Study Design

Study Type
interventional
Phase
not applicable
Allocation
RANDOMIZED
Masking
SINGLE
Who Masked
OUTCOMES ASSESSOR
Masking Details
Blindness in the study was done by data collectors and statisticians. The data were collected by the nurse who did not know who is in the experiment and control group. To reduce selection bias and to control the variables that may have an effect on outcome variables, random assignment was made to the experimental and the control group by a statistician who did not know the names and characteristics of the parents of and children with CF. The analysis of the data coded according to the groups was made by a statistician. After the statistical analyses were completed and the research report was written, the researcher explained the coding for the experimental and control group.
Purpose
SUPPORTIVE CARE
Intervention Model
PARALLEL
Sponsor Type
OTHER
Responsible Party
PRINCIPAL INVESTIGATOR
PI Title
Professor

Study Record Dates

First Submitted

December 28, 2018

First Posted

January 11, 2019

Study Start

December 14, 2016

Primary Completion

February 26, 2017

Study Completion

June 2, 2017

Last Updated

January 11, 2019

Record last verified: 2019-01

Locations