Development and Validation of Family Adjustment Inventory

Study Overview
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Brief Summary
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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
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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): Validation consists in several steps, identical for the two versions but in different in timing, depending on the number of admnistration. first phase: the FAI is administered to parents of patients with different chronic disease (each form needs to reach the total of 300 administrations). second phase: statistical analysis aimed to obtain the final version of each FAI form (define actual dimensions and most adequate items) third phase: administration to a new sample of parents of children suffering from a chronic disease (each form needs to reach the total of 150 administrations). fourth phase: statistical analysis aimed to confirm the adequacy of the instrument

Official Title
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Development and Validation of a New Instrument to Evaluate Parents' Adjustment to Their Child's Chronic Disease: the Family Adjustment Inventory

Conditions
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Adjustment Reaction

Intervention / Treatment
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* Other: FAI-O
* Other: FAI-S
* Other: Personal Data Questionnaire


Participation Criteria
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Eligibility Criteria
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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
Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Parents of children with a chronic disease with no siblings<br>Parents of children suffering from a chronic disease who has no brother or sister over 3 years of age | Other: FAI-O<br>* Administration of Family Adjustment Inventory in the version Only-child<br>Other: Personal Data Questionnaire<br>* This form requires informations about child, respondent and partner (if any), and evaluates the presence of any distressful event happened during the last year<br>|
| Parents of children with a chronic disease with siblings<br>Parents of children suffering from a chronic disease who one or more sibling over the age of 3 years old | Other: FAI-S<br>* Administration of Family Adjustment Inventory in the version Sibling<br>Other: Personal Data Questionnaire<br>* This form requires informations about child, respondent and partner (if any), and evaluates the presence of any distressful event happened during the last year<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Perceived family adjustment | 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. | Parents fill in the FAI one single time at enrollment | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Presence of distressful events happened in the last year | The presence of distressful events is collected through a personal data questionnaire, specifically designed for this study in accordance to literature in the field | Parents fill in the personal data questionnaire one single time at enrollment | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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adjustment, family functioning, chronic disease, emotions