Concerns of Children Whose Parents Have Cystic Fibrosis (MUCOKIDS)
Experiences, Expectations and Needs of Children Whose Parents Have Cystic Fibrosis - Exploratory Study
As more and more patients with cystic fibrosis (CF) become parents, we have studied parenting concerns in this serious chronic disease in a first study (MucoPar) which is ongoing.
The current study (MucoKids) is an extension of the previous MucoPar study and aims to explore and collect the perceptions, expectations and needs of children whose one parent has CF.
This will be done in the context of individual interviews or in several small groups of children led by a psychologist who will encourage them to develop what constitutes to be the child of somebody with CF.
The collected information should make it possible to develop and propose adapted medico-psycho-social interventions, if necessary, in connection with patient associations.
연구 개요
상세 설명
Life expectancy has improved significantly in cystic fibrosis in recent years. From pediatric disease, it has become a disease of the adult, with the emergence of new issues, such as becoming a parent. Parent patients still face the risk of complications and death while their child is still young. However, there is very little data in the literature on parenting in cystic fibrosis. In a first study which is ongoing (43 patients out of the 50 planned have been included), we intended to study parenting, considering the sick parent's point of view.
However, this question does not only concern parents and their spouses. It is also fundamental to take into account the experience of the children, to understand their experiences and their own needs in this context of serious illness of a parent with limited life expectancy.
Therefore, the purpose of this study is to explore and collect the perceptions, expectations and needs of children whose one parent has CF. Children are eligible from the age of 6 if their parents agree.
Children will have semi-structured individual interviews or will participate in focus groups with the study psychologist in order to express their feelings, difficulties, expectations and needs in living with a parent who has CF.
Thematic analysis of the content will first be done separately for individual interviews and focus groups, and a global synthesis will be carried out.
연구 유형
등록 (실제)
연락처 및 위치
연구 장소
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Paris, 프랑스, 75014
- Cochin Hospital
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Suresnes, 프랑스, 92150
- Foch hospital
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참여기준
자격 기준
공부할 수 있는 나이
건강한 자원 봉사자를 받아들입니다
연구 대상 성별
샘플링 방법
연구 인구
설명
Inclusion Criteria:
- Have a parent with CF cared at one of the 2 adult CF centres participating into the study
- Have the authorization of the parent with CF if the child is an adult and of both parents for subjects less than 18 years old
- Be ay least 6 years old
- Have a good level of French and good speaking skills for adolescents and adults
- Have a level of French and oral expression skills adapted to their age group for the youngest
Exclusion Criteria:
- Psychiatric pathology (borderline state, bipolarity and other psychotic disorders) in their parents or themselves
- Serious somatic disease not related to cystic fibrosis in their parents or themselves
공부 계획
연구는 어떻게 설계됩니까?
디자인 세부사항
코호트 및 개입
그룹/코호트 |
개입 / 치료 |
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Focus groups
Children aged 8 years or more participating in a focus group with the study psychologist
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Groups of 3 to 8 children led by the study psychologist lasting 1 hour for the 8-11-year-old children and up to 2 hours for the children of at least 12 years old, about being the child of a parent with CF
Interview led by the psychologist about being the child of a parent with CF
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Individual interviews
All children who have an individual interview with the study psychologist
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Groups of 3 to 8 children led by the study psychologist lasting 1 hour for the 8-11-year-old children and up to 2 hours for the children of at least 12 years old, about being the child of a parent with CF
Interview led by the psychologist about being the child of a parent with CF
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연구는 무엇을 측정합니까?
주요 결과 측정
결과 측정 |
측정값 설명 |
기간 |
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Identification of themes about being the child of a parent with CF
기간: 2 years
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Content of groups and individual interviews analysed by thematic analysis
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2 years
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2차 결과 측정
결과 측정 |
측정값 설명 |
기간 |
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Occurrence of themes
기간: 2 years
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The number of appearances of each theme, in focus groups and in individual interviews will provide information on the importance of each theme.
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2 years
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공동 작업자 및 조사자
수사관
- 연구 의자: Cécile FLAHAULT, PhD, Assistance Publique - Hôpitaux de Paris
연구 기록 날짜
연구 주요 날짜
연구 시작 (실제)
기본 완료 (실제)
연구 완료 (실제)
연구 등록 날짜
최초 제출
QC 기준을 충족하는 최초 제출
처음 게시됨 (실제)
연구 기록 업데이트
마지막 업데이트 게시됨 (실제)
QC 기준을 충족하는 마지막 업데이트 제출
마지막으로 확인됨
추가 정보
이 정보는 변경 없이 clinicaltrials.gov 웹사이트에서 직접 가져온 것입니다. 귀하의 연구 세부 정보를 변경, 제거 또는 업데이트하도록 요청하는 경우 register@clinicaltrials.gov. 문의하십시오. 변경 사항이 clinicaltrials.gov에 구현되는 즉시 저희 웹사이트에도 자동으로 업데이트됩니다. .
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