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NCT Number: NCT06289972

Development,Validity and Reliability of a Caregiver Version of the Breathlessness Beliefs Questionnaire

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.

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Key information

Conditions

Cystic Fibrosis Congenital, Hereditary, and Neonatal Diseases and Abnormalities Digestive System Diseases Genetic Diseases, Inborn Infant, Newborn, Diseases Lung Diseases Pancreatic Diseases Parents Respiratory Tract Diseases

Age range

25 year–75 year

Sex eligibility

All sexes

Study type

Observational

Primary location

Haliç University

Istanbul, Eyup, 34060, Turkey (Türkiye)

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • To be between 25-75 years old,
  • To be literate in Turkish,
  • Being a mother, father or other caregiver of a child,
  • Voluntarily agreeing to participate in the study,
  • Be taking care of the child for at least one year

Exclusion criteria

  • Having cognitive impairment at a level that prevents cooperation with the scales,
  • Not living in the same household with a child with cystic fibrosis.

Treatment and study plan

Primary outcomes

  1. The Breathlessness Beliefs Questionnaire (Caregiver Version) (BBQ-C)

    Time frame: baseline, after 15 days

    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.

Secondary outcomes

  1. Cystic Fibrosis Questionnaire Revised (CFQ-R) for parent version

    Time frame: baseline, after 15 days

    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.

  2. Parent Attitude Scale (PAS)

    Time frame: baseline, after 15 days

    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.

  3. Perceived Social Support Scale (PSS)

    Time frame: baseline, after 15 days

    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.

  4. Parent Attitude Scale

    Time frame: baseline, after 15 days

    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.

Sponsors and collaborators

Lead sponsor

Halic University

Other

Registry information

Official study title

Development, Validity and Reliability of a Caregiver Version of the Breathlessness Beliefs Questionnaire

Important dates

Study start
2024
Primary completion
2024
Study completion
2024
First posted
Mar 4, 2024
Registry last updated
Mar 21, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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