The many roles of families in family-centered care--part VI.
The mother of a child with cystic fibrosis describes her journey from sorrow and fear to hope. Her journey to hope began as partnership with a knowledgeable pediatrician and cystic fibrosis team. The journey wound through demanding care requirements, anguishing questions, and new realizations. The support of friends, and immersion in information about the disease, were also empowering. An introduction to the Cystic Fibrosis Foundation led this mother to volunteering, then to serving on a chapter Board of Directors, and finally to employment by the Foundation as a fundraiser. Both parents and health care organizations benefit from such arrangements. As this author states: "Working with the Cystic Fibrosis Foundation gives me a 'big picture' view of the state of my daughter's disease, and a sense of contributing a small part to the product of its big mission to cure and control CF, and [gives me] hope."
Cystic Fibrosis Foundation, Cockeysville, MD, USA.
Caryl G
CG
Siems
Deborah
D
Dokken
D000223:Adaptation, Psychological; D001294:Attitude to Health; D017028:Caregivers / Q000193:education / Q000523:psychology; D003299:Cooperative Behavior; D003550:Cystic Fibrosis / Q000175:diagnosis / Q000517:prevention & control* / Q000523:psychology; D005239:Fear; D005260:Female; D005582:Foundations / Q000458:organization & administration*; D006117:Grief; D006801:Humans; D007223:Infant; D008396:Maryland; D009035:Mothers / Q000193:education / Q000523:psychology*; D009937:Organizational Objectives; D018802:Patient-Centered Care / Q000458:organization & administration*; D010372:Pediatrics / Q000458:organization & administration; D011368:Professional-Family Relations; D012380:Role; D012944:Social Support