Development and Validation of a New Instrument to Evaluate Parents' Adjustment to Their Child's Chronic Disease: the Family Adjustment Inventory
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 发起方
- 入组人数
- 900
- 试验地点
- 1
- 主要终点
- Perceived family adjustment
研究概览
简要总结
A diagnosis of chronic disease in childhood may be disruptive for families. Some parents show good adjustment, while others may have more difficulties.
Aim of this study is to develop and validate a new psychometric instrument to help precociously detect parents' vulnerability in the process of adjustment to their child's chronic disease at different times of care.
详细描述
FAI was developed in two different forms:
- for parents with one children suffering from a chronic disease or ill children who has siblings younger than 3 years old - FAI-O (only child);
- for parents with at least two children, the brother/sister of the ill child has 3 years or more- FAS-S (siblings) The two forms are identical, with the exception that FAI-S has an additional dimension with respect to FAI-O, that specifically regards the involvement of siblings in the illness path of the sick brother/sister.
Development of FAI followed several steps:
- definition of initial instrument dimensions
- item wording for each dimension
- definition of scoring
- focus group with parents of patients suffering from a chronic disease to evaluate item content and linguistic clarity
Validation of FAI for each form (FAI-O and FAI-S):
研究设计
- 研究类型
- Observational
- 观察模型
- Case Only
- 时间视角
- Cross Sectional
入排标准
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •consent for participating in the study
- •having a child suffering from a chronic illness and treated in the hospital in the following specialties: onco-hematology, neuro-oncology, diabetology, cystic fibrosis, metabolic disease, gastroenterology, cardiology, nephrology, rheumatology, allergology, pneumology, immunology, intensive care unit
- •italian speaking
排除标准
- •cognitive impairment
- •no good knowledge of italian language
结局指标
主要结局
Perceived family adjustment
时间窗: Parents fill in the FAI one single time at enrollment
FAI (Family Adjustment Inventory) measures family adjustment. The preliminary versions of FAI-O consists in182 items and FAI-S in197 items, both scored on a 5-point likert scale from 0 to 4. Higher scores represent poorer adjustment.
次要结局
- Presence of distressful events happened in the last year(Parents fill in the personal data questionnaire one single time at enrollment)
研究者
Rosanna Martin
Pediatric Psychologist
Meyer Children's Hospital IRCCS