Protocol for study of information needs of parents of infants newly diagnosed with cystic fibrosis

Danielle Edwards; Wendy Smyth; Rhondda Jones; Claire Wainwright; Cindy Branch-Smith; Kristin Wicking; Tonia Douglas; Linda Shields

Protocol for study of information needs of parents of infants newly diagnosed with cystic fibrosis

Danielle Edwards, Wendy Smyth, Rhondda Jones, Claire Wainwright, Cindy Branch-Smith, Kristin Wicking, Tonia Douglas, Linda Shields

Research output: Contribution to journal › Article › peer-review

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Abstract

Background: Cystic Fibrosis (CF) is an inherited disorder with currently no known cure, and treatment requires significant lifestyle changes. For most parents, the diagnosis of CF in their newborn infant is unexpected and requires intensive daily treatment and monitoring. Parents have a variety of information needs and priorities. Research is needed to identify and address these needs.
Aims: To investigate the information needs, priorities, and information-seeking behaviours of parents of infants newly diagnosed with CF using a validated questionnaire in a prospective study within Queensland.
Significance: Results will assist health care professionals in communicating with parents of infants recently diagnosed with CF, and contribute to the development of adequate, appropriate and timely information packages tailored to individuals and families.
Methods: A convenience sample of 20 parents will be recruited through the Brisbane CF centre, and will be asked to participate by completing the validated questionnaire. Responses will be analysed using descriptive statistics, and open-ended questions will be grouped into themes and described.
Conclusion: This protocol describes the background, significance, aims and methods of the study.

Original language	English
Article number	20140045
Pages (from-to)	1-7
Number of pages	7
Journal	Working Papers in the Health Sciences
Volume	1
Issue number	8
Publication status	Published - 2014

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@article{91d57407b1a247a2a410232f8bdd5fde,

title = "Protocol for study of information needs of parents of infants newly diagnosed with cystic fibrosis",

abstract = "Background: Cystic Fibrosis (CF) is an inherited disorder with currently no known cure, and treatment requires significant lifestyle changes. For most parents, the diagnosis of CF in their newborn infant is unexpected and requires intensive daily treatment and monitoring. Parents have a variety of information needs and priorities. Research is needed to identify and address these needs. Aims: To investigate the information needs, priorities, and information-seeking behaviours of parents of infants newly diagnosed with CF using a validated questionnaire in a prospective study within Queensland. Significance: Results will assist health care professionals in communicating with parents of infants recently diagnosed with CF, and contribute to the development of adequate, appropriate and timely information packages tailored to individuals and families.Methods: A convenience sample of 20 parents will be recruited through the Brisbane CF centre, and will be asked to participate by completing the validated questionnaire. Responses will be analysed using descriptive statistics, and open-ended questions will be grouped into themes and described.Conclusion: This protocol describes the background, significance, aims and methods of the study.",

keywords = "Cystic fibrosis, Communication, Information needs, Parents",

author = "Danielle Edwards and Wendy Smyth and Rhondda Jones and Claire Wainwright and Cindy Branch-Smith and Kristin Wicking and Tonia Douglas and Linda Shields",

note = "Includes bibliographical references.",

year = "2014",

language = "English",

volume = "1",

pages = "1--7",

journal = "Working Papers in the Health Sciences",

issn = "2051-6266",

number = "8",

}

Protocol for study of information needs of parents of infants newly diagnosed with cystic fibrosis. / Edwards, Danielle; Smyth, Wendy; Jones, Rhondda; Wainwright, Claire; Branch-Smith, Cindy; Wicking, Kristin; Douglas, Tonia; Shields, Linda.

In: Working Papers in the Health Sciences, Vol. 1, No. 8, 20140045, 2014, p. 1-7.

Research output: Contribution to journal › Article › peer-review

TY - JOUR

T1 - Protocol for study of information needs of parents of infants newly diagnosed with cystic fibrosis

AU - Edwards, Danielle

AU - Smyth, Wendy

AU - Jones, Rhondda

AU - Wainwright, Claire

AU - Branch-Smith, Cindy

AU - Wicking, Kristin

AU - Douglas, Tonia

AU - Shields, Linda

N1 - Includes bibliographical references.

PY - 2014

Y1 - 2014

N2 - Background: Cystic Fibrosis (CF) is an inherited disorder with currently no known cure, and treatment requires significant lifestyle changes. For most parents, the diagnosis of CF in their newborn infant is unexpected and requires intensive daily treatment and monitoring. Parents have a variety of information needs and priorities. Research is needed to identify and address these needs. Aims: To investigate the information needs, priorities, and information-seeking behaviours of parents of infants newly diagnosed with CF using a validated questionnaire in a prospective study within Queensland. Significance: Results will assist health care professionals in communicating with parents of infants recently diagnosed with CF, and contribute to the development of adequate, appropriate and timely information packages tailored to individuals and families.Methods: A convenience sample of 20 parents will be recruited through the Brisbane CF centre, and will be asked to participate by completing the validated questionnaire. Responses will be analysed using descriptive statistics, and open-ended questions will be grouped into themes and described.Conclusion: This protocol describes the background, significance, aims and methods of the study.

AB - Background: Cystic Fibrosis (CF) is an inherited disorder with currently no known cure, and treatment requires significant lifestyle changes. For most parents, the diagnosis of CF in their newborn infant is unexpected and requires intensive daily treatment and monitoring. Parents have a variety of information needs and priorities. Research is needed to identify and address these needs. Aims: To investigate the information needs, priorities, and information-seeking behaviours of parents of infants newly diagnosed with CF using a validated questionnaire in a prospective study within Queensland. Significance: Results will assist health care professionals in communicating with parents of infants recently diagnosed with CF, and contribute to the development of adequate, appropriate and timely information packages tailored to individuals and families.Methods: A convenience sample of 20 parents will be recruited through the Brisbane CF centre, and will be asked to participate by completing the validated questionnaire. Responses will be analysed using descriptive statistics, and open-ended questions will be grouped into themes and described.Conclusion: This protocol describes the background, significance, aims and methods of the study.

KW - Cystic fibrosis

KW - Communication

KW - Information needs

KW - Parents

UR - https://www.southampton.ac.uk/wphs/about/index.page

M3 - Article

VL - 1

SP - 1

EP - 7

JO - Working Papers in the Health Sciences

JF - Working Papers in the Health Sciences

SN - 2051-6266

IS - 8

M1 - 20140045

ER -