Creating a tool to assess family adjustment to childhood chronic diseases
Development and Validation of a New Instrument to Evaluate Parents' Adjustment to Their Child's Chronic Disease: the Family Adjustment Inventory
This study is testing a new tool to help understand how parents cope with their child's chronic illness, whether they have one child or several.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 900 (estimated) |
| Sex | All |
| Sponsor | Meyer Children's Hospital IRCCS Academic / other |
| Locations | 1 site (Florence, Firenze) |
| Trial ID | NCT04049890 on ClinicalTrials.gov |
What this trial studies
This study aims to develop and validate a new psychometric instrument called the Family Adjustment Inventory (FAI) to identify parents' vulnerability in adjusting to their child's chronic illness. The FAI will have two forms: one for parents of only children with chronic diseases and another for parents with multiple children, including siblings of the ill child. The development process includes defining dimensions, item wording, scoring, and conducting focus groups with parents. Validation involves administering the FAI to parents of children with various chronic diseases and performing statistical analyses to refine the instrument.
Who should consider this trial
Good fit: Ideal candidates are parents of children suffering from chronic illnesses who are receiving treatment in specific hospital specialties.
Not a fit: Patients who do not speak Italian or have cognitive impairments may not benefit from this study.
Why it matters
Potential benefit: If successful, this tool could help healthcare providers identify families at risk for adjustment difficulties, allowing for timely support and interventions.
How similar studies have performed: While the approach of developing psychometric tools for family adjustment is established, the specific instrument being validated in this study is novel.
Eligibility criteria
Show full inclusion / exclusion criteria
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
Where this trial is running
Florence, Firenze
- Meyer Children's Hospital — Florence, Firenze, Italy (Recruiting)
Study contacts
- Study coordinator: Rosanna Martin, MSc
- Email: rosanna.martin@meyer.it
- Phone: 055 5662475
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.