Clinical trial NCT06327802: Improving the Well-being of Caregivers of Cystic Fibrosis Patients During Physiotherapy Treatment
Official title: Improving the Well-being of Caregivers of Cystic Fibrosis Patients During Physiotherapy Treatment
Study type: OBSERVATIONAL
Overall status: RECRUITING
Conditions: Cystic Fibrosis
Keywords: Cystic Fibrosis
caregivers
burden
Lead sponsor: Pole Sante Grace de Dieu
Sponsor class: OTHER
First posted: 2024-03-25
Enrollment: 360
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Observational model: COHORT
Time perspective: PROSPECTIVE
Sampling method: NON_PROBABILITY_SAMPLE
Study population: The subjects recruited are parents (father, mother, dyads (father+mother) of children suffering from cystic fibrosis) who agree to answer the various questionnaires.

Brief summary: The main objective of the study is to determine the impact of cystic fibrosis affecting a child on the parents' quality of life, their possible anxiety and depressive symptoms, their general fatigue and the feeling of burden in these caregivers.

Detailed description: Cystic fibrosis is the most common rare genetic disease in France, and in European countries in general. According to current epidemiological data, 80,000 people worldwide are affected. It represents a major public health issue, as it is a chronic disease that has a major impact on the life expectancy of affected patients. Thanks to the latest medical advances, promising treatments are now available, helping to improve patient survival rates to over 40-50 years. Among existing treatments, respiratory and musculoskeletal physiotherapy are highly recommended. It will play a key role throughout the life of a cystic fibrosis patient. Patients with chronic respiratory diseases are at high risk of developing anxiety and depressive symptoms. As the disease worsens, the patient becomes increasingly dependent, leading to restrictions in participation and activities of daily living. As a result, the presence of family and friends is of paramount importance in ensuring that sick children adhere to treatment and take their medication. However, this workload on the part of a parent, who has to make major changes to their lifestyle in order to adapt to their child's treatment, can have a considerable impact on their well-being, and increase the risk of anxiety/depression, even leading to burnout. Psychologists have studied the subject of assessing quality of life in parents of children with cystic fibrosis. At present, knowing that the quality of life of sufferers is as much affected as that of their caregivers, questionnaires have been introduced to assess parents' quality of life, notably the CarerQol-7D . The aim of this study would be to raise the issue of exhaustion among parents of children with cystic fibrosis, and to consider how to reduce the impact of this heavy mental burden on them. This would contribute to better therapeutic adherence and improved treatment of children. To this end, questionnaires and interviews could be set up with parents, with the aim of developing a relevant and optimal action strategy for their children.

Eligibility criteria: Inclusion Criteria:

* parents (father, mother, dyads (father+mother) of children suffering from cystic fibrosis) who agree to answer the various questionnaires.

Exclusion Criteria:

-

Primary outcomes:
measure: Zarit Burden Interview
timeFrame: 1 year
Secondary outcomes:
Other outcomes:
Locations:
city: Caen
country: France
facility: PSLA GDD
Study officials:
References: