Effect of Parental Attitude on Functional and Physical Level of Children With Cystic Fibrosis

Investigation of the Effect of Parental Illness Beliefs and Anxiety Level on Functional and Physical Level of the Child in Children With Cystic Fibrosis

Some parents may be more protective of children with CF due to concerns about worsening of the disease due to infection, which can affect their functional level. The goal of this observational study is to learn about the family's protective approach to the functioning and disease course of children with cystic fibrosis (CF) to determine whether there are possible negative effects. There will be an alternative viewpoint offered to clinicians regarding the management of CF with outputs of this study.

Cystic fibrosis (CF) is an inherited disease characterized by pulmonary involvement. Children with CF may have low levels of physical activity, physical fitness and functional capacity, and peripheral muscle weakness. Parents who take care of children with CF may be protective of their children's social environment due to reasons such as the risk of infection. Based on the idea that parents may have potential limitations on their children with CF, the aim of this study was to examine the effect of parental illness beliefs and anxiety levels on the functional and physical level of the child. Children with CF will be administered Modified Shuttle Walking Test, Munich Physical Fitness Test, quadriceps muscle strength and hand grip strength test, respiratory function and respiratory muscle strength test, Child Physical Activity Questionnaire, Shortness of Breath Beliefs Questionnaire, Revised Cystic Fibrosis Questionnaire, Parental Attitude Scale, Perceived Social Support Scale. Parents will be administered the Shortness of Breath Beliefs Questionnaire (Parent version), Revised Cystic Fibrosis Questionnaire (Parent version), Parent Attitude Scale, Fear of Disease Progression Questionnaire for Parents. The level of correlation between the outcomes of the scales administered to parents and the assessment outcomes administered to children will be examined.

• Inclusion Criteria:

  1. For a child

     1. To be between 7-17 years old,
     2. Living with family or caregiver.

  2. For the parent

     1. Being the mother, father or other caregiver of the child,
     2. Voluntarily agreeing to participate in the study on behalf of both the child and oneself.

• Exclusion Criteria:

  1. For the child

     1. Having cognitive impairment that would prevent participation in the study or being able to cooperate with the measurements and not being able to adapt,
     2. History of previous lung or liver transplantation,
     3. History of hospitalization within the last 1 month,
     4. Having a neurological or orthopedic comorbidity that affects mobility.

  2. For the parent

     1. Having cognitive impairment at a level that prevents participation in the study
     2. Not living in the same household with the child.