Development and Validation of a New Instrument to Evaluate Parents' Adjustment to Their Child's Chronic Disease: the Family Adjustment Inventory
Trial Snapshot
- Phase
- Not Applicable
- Status
- Recruiting
- Sponsor
- Enrollment
- 900
- Locations
- 1
- Primary Endpoint
- Perceived family adjustment
Study Overview
Brief Summary
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.
Detailed Description
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):
Study Design
- Study Type
- Observational
- Observational Model
- Case Only
- Time Perspective
- Cross Sectional
Eligibility Criteria
- Sex
- All
- Accepts Healthy Volunteers
- No
Inclusion Criteria
- •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
Exclusion Criteria
- •cognitive impairment
- •no good knowledge of italian language
Outcomes
Primary Outcomes
Perceived family adjustment
Time Frame: 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.
Secondary Outcomes
- Presence of distressful events happened in the last year(Parents fill in the personal data questionnaire one single time at enrollment)
Investigators
Rosanna Martin
Pediatric Psychologist
Meyer Children's Hospital IRCCS