| Autor: |
Dollimount, Anna, Ram, Malina, Caissie, Danielle M., Power, Hilary A., McKay, Corinne, Afseth, Niki, Genoe, Rebecca, Switzer, Heather, Tam, Julian, Wright, Kristi D. |
| Zdroj: |
Canadian Journal of Respiratory, Critical Care, and Sleep Medicine; March 2024, Vol. 8 Issue: 2 p54-62, 9p |
| Abstrakt: |
AbstractRATIONALE: Cystic Fibrosis (CF) is a genetic, multisystem disease1that can be diagnosed in both childhood and adulthood. Diagnosis of CF during childhood is well-documented in the literature, and there is substantial information available for the parents of children with CF.2However, there is less known about the experiences of those with adult-diagnosed CF coupled with limited to no tailored resources for those who receive a later CF diagnosis.3,4OBJECTIVESThe current study examined the lived experiences and information needs of individuals with adult-diagnosed CF in Canada, as well as attitudes toward receiving CF-related education viathe Internet.METHODSEight individuals diagnosed with CF as adults (Mage = 41.71, SD = 14.47) and 9 health care providers (HCP; Mage = 45.35, SD = 7.91) completed a brief demographic questionnaire, consent form, and individual semi-structured interview either viaZoom or telephone. Thematic analysis was used to analyze the data collected for each participant group.MAIN RESULTS: Five major themes were generated from both participant groups: (1) CF information needs; (2) challenges; (3) emotions and coping; (4) health service needs; and (5) Internet-delivered resource considerations.CONCLUSIONSThe findings highlight the unique experiences and challenges faced by those diagnosed with CF in adulthood. Information from the current study will be used alongside the empirical literature to inform the development of an evidence-based, Internet-delivered resource for this population. |
| Databáze: |
Supplemental Index |
| Externí odkaz: |
|
