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| Name | Class |
|---|---|
| University of Florence | OTHER |
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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.
FAI was developed in two different forms:
Development of FAI followed several steps:
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Parents of children with a chronic disease with no siblings | Parents of children suffering from a chronic disease who has no brother or sister over 3 years of age |
| |
| Parents of children with a chronic disease with siblings | Parents of children suffering from a chronic disease who one or more sibling over the age of 3 years old |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| FAI-O | Other | Administration of Family Adjustment Inventory in the version "Only-child" |
|
| 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 |
| 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 |
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Inclusion Criteria:
Exclusion Criteria:
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Parents of patient with a child sufferinf from a chronic illness and treated in the hospital for this condition .
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Rosanna Martin, MSc | Contact | 055 5662475 | 0039 | rosanna.martin@meyer.it |
| Laura Vagnoli, MSc | Contact | 055 5662719 | 0039 | laura.vagnoli@meyer.it |
| Name | Affiliation | Role |
|---|---|---|
| Francesca Maffei, Msc | Meyer Children's Hospital IRCCS | Study Director |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Meyer Children's Hospital | Recruiting | Florence | Firenze | 50139 | Italy |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| Background | Aneshensel CS, Pearlin LI, Mullan JT, Zarit SH, Whitlatch CJ (1995). Profiles in caregiving: the unexpected career. San Diego Academic Press, Inc. | ||
| 23645551 | Background | Boer LM, Daudey L, Peters JB, Molema J, Prins JB, Vercoulen JH. Assessing the stages of the grieving process in chronic obstructive pulmonary disease (COPD): validation of the Acceptance of Disease and Impairments Questionnaire (ADIQ). Int J Behav Med. 2014 Jun;21(3):561-70. doi: 10.1007/s12529-013-9312-3. | |
| 15917492 |
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| ID | Term |
|---|---|
| D002908 | Chronic Disease |
| ID | Term |
|---|---|
| D020969 | Disease Attributes |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |
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| FAI-S | Other | Administration of Family Adjustment Inventory in the version "Sibling" |
|
| Personal Data Questionnaire | Other | This form requires informations about child, respondent and partner (if any), and evaluates the presence of any distressful event happened during the last year |
|
| Background |
| Bonner MJ, Hardy KK, Guill AB, McLaughlin C, Schweitzer H, Carter K. Development and validation of the parent experience of child illness. J Pediatr Psychol. 2006 Apr;31(3):310-21. doi: 10.1093/jpepsy/jsj034. Epub 2005 May 25. |
| 21064097 | Background | Klassen AF, Raina P, McIntosh C, Sung L, Klaassen RJ, O'Donnell M, Yanofsky R, Dix D. Parents of children with cancer: which factors explain differences in health-related quality of life. Int J Cancer. 2011 Sep 1;129(5):1190-8. doi: 10.1002/ijc.25737. Epub 2010 Dec 17. |
| Background | McCubbin HI, McCubbin MA, Patterson JM, Cauble AE, Wilson LR, Warwick W. (1983). CHIP Coping Health Inventory for Parents: an assessment of parental coping patterns in the care of the chronically ill child. Journal of Marriage and Family, 45(2), 359-370. |
| 14723791 | Background | Raina P, O'Donnell M, Schwellnus H, Rosenbaum P, King G, Brehaut J, Russell D, Swinton M, King S, Wong M, Walter SD, Wood E. Caregiving process and caregiver burden: conceptual models to guide research and practice. BMC Pediatr. 2004 Jan 14;4:1. doi: 10.1186/1471-2431-4-1. |
| 15930188 | Background | Raina P, O'Donnell M, Rosenbaum P, Brehaut J, Walter SD, Russell D, Swinton M, Zhu B, Wood E. The health and well-being of caregivers of children with cerebral palsy. Pediatrics. 2005 Jun;115(6):e626-36. doi: 10.1542/peds.2004-1689. |
| 15503838 | Background | Rossi Ferrario S, Baiardi P, Zotti AM. Update on the family strain questionnaire: a tool for the general screening of caregiving-related problems. Qual Life Res. 2004 Oct;13(8):1425-34. doi: 10.1023/B:QURE.0000040795.78742.72. |