Purpose
Following diagnosis with cystic fibrosis (CF), initial education powerfully influences
parental adjustment and engagement with care teams. This study explored the education
needs of ten parents following their infant's diagnosis with CF via newborn screening.
Design and methods
Phenomenological study using van Manen's approach, with ten participant parents of
children 1–8 years with CF.
Results
Parents recounted varying degrees of coping with information they acknowledged as
overwhelming and difficult. For some it was too much too soon, while others sought
such clarity to put CF into context.
Conclusions
Participants delivered insight into their engagement with their education about CF.
Their recommendations for appropriate context, content, format and timing of delivery
enable development of education that is accurate and relevant.
Key words
To read this article in full you will need to make a payment
Purchase one-time access:
Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online accessOne-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:
Subscribe to Journal of Pediatric Nursing: Nursing Care of Children and FamiliesAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
References
- Cystic fibrosis in Australia.Cystic Fibrosis Australia, Canberra2012
- Chronic childhood illnesses: What aspects of caregiving do parents value?.Child: Care, Health and Development. 1995; 21: 291-304https://doi.org/10.1111/j.1365-2214.1995.tb00759.x
- Cystic fibrosis newborn screening: Impact of early screening results on parenting stress.Pediatric Nursing. 1997; 23: 143-151
- Factors that influence parents’ experiences with results disclosure after newborn screening identifies genetic carrier status for cystic fibrosis or sickle cell hemoglobinopathy.Patient Education and Counseling. 2013; 90: 378-385
- Enhancing self-efficacy for self-management in people with cystic fibrosis.Studies in Health Technology and Information. 2011; 169: 33-37
- Improved survival in cystic fibrosis patients diagnosed by newborn screening compared to a historical cohort from the same centre.Archives of Disease in Childhood. 2011; 96: 1118-1123https://doi.org/10.1136/archdischild-1118 2011-300449
- Parental information seeking following a positive newborn screening for cystic fibrosis.Journal of Health Communication. 2010; 15: 880-894https://doi.org/10.1080/10810730.2010.522226
- Early diagnosis of cystic fibrosis through neonatal screening prevents severe malnutrition and improves long-term growth.Pediatrics. 2001; 107: 1-13https://doi.org/10.1542/peds.107.1.1)
- Compliance with treatment protocols: Interventions for children with chronic illness.Archives of Disease in Childhood. 1999; 80: 96-200https://doi.org/10.1136/adc.80.2.196
- Fourth generation evaluation.Sage Publications, Newbury Park, California1989
- Neglected user perspectives in the design of an online hospital bed-state system: Implications for the National Programme for IT in the NHS.Health Informatics Journal. 2006; 12: 293-303https://doi.org/10.1177/1460458206069759
- Parents’ information needs about the treatment of their chronically ill child: A qualitative study.Patient Education and Counseling. 2006; 62: 228-234
- Parents' recollection of the initial communication of the diagnosis of cystic fibrosis.Pediatrics. 1996; 97: 204-209
- “All at sea”: The experience of living with cystic fibrosis.Qualitative Health Research. 2010; 20: 352-364https://doi.org/10.1177/1049732309354277
- Establishing rigour in qualitative research: The decision trail.Journal of Advanced Nursing. 1993; 53: 91-100
- Lessons learned from 20 years of newborn screening for cystic fibrosis.Medical Journal of Australia. 2012; 196: 67-70https://doi.org/10.5694/mja11.10686
- Self-efficacy: Empowering parents of children with cystic fibrosis.Journal of Cystic Fibrosis. 2013; 12: 538-543https://doi.org/10.1016/j.jcf.2012.11.014
- Continuity of care for children with complex chronic health conditions: Parents’ perspectives.BMC Health Services Research. 2009; 9: 242-252https://doi.org/10.1186/1472-6963-9-242
- Nursing research: Generating and assessing evidence for nursing practice.Lippincott Williams & Wilkins, Philadelphia2013
- Communicating inherited genetic risk between parent and child: A meta-thematic synthesis.International Journal of Nursing Studies. 2013; 50: 870-880https://doi.org/10.1016/j.ijnurstu.2012.09.002
- Informing parents about positive newborn screen results: Parents' recommendations.Journal of Child Health Care. 2012; 16: 367-381https://doi.org/10.1177/1367493512443906
- An overview of international literature from cystic fibrosis registries: 2. Neonatal screening and nutrition/growth.Journal of Cystic Fibrosis. 2010; 9: 75-83https://doi.org/10.1016/j.jcf.2009.11.002
- Writing usable qualitative health research findings.Qualitative Health Research. 2012; 22: 1404-1413https://doi.org/10.1177/1049732312450368
- Self-management education for cystic fibrosis.Cochrane Database of Systematic Reviews. 2014; 2014https://doi.org/10.1002/14651858.CD007641.pub3
- What follows newborn screening? An evaluation of a residential education program for parents of infants with newly diagnosed cystic fibrosis.Pediatrics. 2004; 114: 411-416
- The parent-staff interaction model of pediatric care.Journal of Pediatric Nursing. 2002; 17: 442-449https://doi.org/10.1053/jpdn.2002.123526
- The lived experience of families of children who are failing to thrive.Journal of Advanced Nursing. 2002; 39: 537-545https://doi.org/10.1046/j.1365-2648.2002.02322
- A qualitative study of physiotherapy education for parents of toddlers with cystic fibrosis.Journal of Cystic Fibrosis. 2010; 9: 205-211
- Psychosocial risk associated with newborn screening for cystic fibrosis: Parents' experience while awaiting the sweat-test appointment.Pediatrics. 2005; 115: 1692-1703https://doi.org/10.1542/peds.2004-0275)
- Newborn screening for cystic fibrosis: Parents' preferences regarding counseling at the time of infants' sweat test.Journal of Genetic Counseling. 2006; 15: 277-291
- Newborn screening: An appeal for improved parent education.Journal of Perinatal & Neonatal Nursing. 2009; 23: 326-334https://doi.org/10.1097/JPN.06013e3181a1bc1f
- Researching lived experience: Human science for an action sensitive pedagogy.State University of New York Press, New York1990
- Parents of children with cystic fibrosis: How they hope, cope and despair.Child: Care, Health and Development. 2008; 34: 344-354
- Treatment burden and health-related quality of life of children with diabetes, cystic fibrosis and asthma.Journal of Paediatrics and Child Health. 2006; 42: 596-600https://doi.org/10.1111/j.1440-1754.2006.00943.x
Article info
Publication history
Published online: December 14, 2015
Accepted:
November 13,
2015
Received in revised form:
November 13,
2015
Received:
October 28,
2014
Identification
Copyright
© 2015 Elsevier Inc. All rights reserved.
