Parental Experience of Information and Education Processes Following Diagnosis of Their Infant With Cystic Fibrosis Via Newborn Screening

详细信息    查看全文

• 作者：Melanie Jessup ; RN ; PhD^a ; ^b ; Tonia Douglas ; MD ; FRACP^c ; ^d ; Lynn Priddis ; PhD ; MPsych Clin ; MPsych(Couns)^e ; Cindy Branch-Smith ; PhD candidate^f ; ^g ; Linda Shields ; MD ; PhD ; FACN ; FAAN ; Centaur Fellow ; MAICD^h ; ⁱ ; ^{lshields@csu.edu.au" class="auth_mail" title="E-mail the corresponding author} ; on behalf of AREST-CF
• 关键词：Cystic fibrosis ; Parenting ; Education ; Patient ; Families ; Caregiving ; Information needs ; Phenomenology
• 刊名：Journal of Pediatric Nursing
• 出版年：2016
• 出版时间：May-June 2016
• 年：2016
• 卷：31
• 期：3
• 页码：e233-e241
• 全文大小：206 K

文摘

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.