An observational study in Cystic Fibrosis and Parents, sponsored by Halic University. Completed at 1 site in Turkey. Open to participants aged 25 Years to 75 Years. Per ClinicalTrials.gov, last updated 2025-03-21.
Sponsored by Halic University · Observational
The goal of this methodological study is to determine the reliability and validity of the The Breathlessness Beliefs Questionnaire Caregiver Version (BBQ-C) version in assessing dysfunctional breathlessness beliefs in caregivers of children with cystic fibrosis.
Cystic fibrosis (CF) is an inherited disease characterized by pulmonary involvement. Children with CF may have obstructive lung disease and related dyspnea, which may progress to respiratory failure and mortality. Dyspnea may lead to activity limitation. Parents who take care of children with CF may be protective of their children's social environment for some reasons such as the risk of infection. The Breathlessness Beliefs Questionnaire (BBQ) is a Turkish validated scale developed to assess dysfunctional beliefs about dyspnea. Based on the idea that parents may develop dysfunctional dyspnea belief behavior in their children with CF, the aim of this study was to develop a caregiver version of the BBQ (The Breathlessness Beliefs Questionnaire Caregiver Version-BBQ-C) and to investigate the validity and reliability of the scale in assessing dysfunctional dyspnea beliefs in parents of children with CF.
1,581 studies on the registry are indexed under Cystic Fibrosis; 190 are open to participants now.
This study's enrollment of 42 is below the median of 85 across 482 observational studies indexed under Cystic Fibrosis.
Browse Cystic Fibrosis studies →Halic University is the lead sponsor of 80 studies on the registry; 12 are open to participants now.
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The population of the study will consist of parents of CF patients who come to the Pediatric Chest Diseases Outpatient Clinic of a private hospital for routine control. The sample will consist of parents who fulfill the inclusion and exclusion criteria and volunteer to participate in the study.
Exclusion Criteria:
The Breathlessness Beliefs Questionnaire (Caregiver Version) (BBQ-C)
The BBQ-C will assess dysfunctional dyspnea beliefs in caregivers.The questionnaire has a minimum score of 11 and a maximum score of 55. As the total score increases, the belief in dysfunctional dyspnea increases.
Time frame: baseline, after 15 days
Cystic Fibrosis Questionnaire Revised (CFQ-R) for parent version
The CFQ-R assesses quality of life. The CFQ-R is a cystic fibrosis-specific scale developed separately for both the child and the parent. The parent version consists of 50 items. Scores for each HRQoL domain; after recoding, each item is summed to generate a domain score and standardized. Scores range from 0 to 100, with higher scores indicating better health. CD-Rom Program available for scoring the CFQ-R.
Time frame: baseline, after 15 days
Parent Attitude Scale (PAS)
The PAS is assess to perceived parental attitude according to child.The scale has three sub-dimensions: acceptance/affection, control/supervision and psychological autonomy. Accordingly, since the scale is scored as Always 5; Mostly 4; No opinion 3; Occasionally 2; Never 1, the individual to whom the scale is applied receives a minimum score of 15 and a maximum score of 75 from each dimension separately. Each dimension is evaluated according to whether the scores are low or high. In whichever dimension the score is higher, it is accepted that the child perceives parental attitude in that way.
Time frame: baseline, after 15 days
Perceived Social Support Scale (PSS)
The PSS is assess to perceived social support according to child. The scale includes 5 items on social support perceived from mother and 5 items on social support perceived from father, and 4 items on social support perceived from peers. A minimum of 14 points and a maximum of 70 points can be obtained from the scale. As the total score increases, the child's perception of social support increases.
Time frame: baseline, after 15 days
Parent Attitude Scale
Parent Attitude Scale is assess to perceived parental attitude according to parent. Democratic (17 items), Authoritarian (11 items), Overprotective (9 items), Permissive (9 items). In scoring, scores and corresponding responses were 5 for "always", 4 for "most of the time", 3 for "sometimes", 2 for "rarely" and 1 for "never". Having a high score meant to adopt the behavior style represented by that domain.
Time frame: baseline, after 15 days
This study is completed, as verified in Mar 2025. You cannot join it, but the record below documents what was studied.
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Halic University