The information needs and preferred roles in treatment decision-making of parents caring for infants with atopic dermatitis

A qualitative study

C. Gore, R. J. Johnson, A. L. Caress, A. Woodcock, A. Custovic

Research output: Contribution to journalArticle

48 Citations (Scopus)

Abstract

Background: Information needs and preferences in treatment decision-making of parents caring for infants with atopic dermatitis (AD) are unknown, despite emphasis on quality information-giving and involvement of health-care users in treatment decisions. Objective: To explore information needs and decisional role-preferences of parents caring for infants with AD. Methods: Qualitative study. Purposive sample: 31 parents caring for infants with AD. Tape-recorded focussed conversation-style interviews. Interview topic-guide literature-derived. Control Preferences Scale (5 sort-card vignettes 'very active' to 'very passive' role) adapted for use with parents; used to facilitate discussion. Thematic analysis of verbatim transcripts. Results: Nine core information needs identified: AD-causation, role of diet, medication-use, medication-side-effects, exacerbating factors, new/alternative medication, nonpharmacological treatments, AD-prevention, AD and other atopic conditions. Parents desired verbal and written information. Many felt their baby's condition was not taken seriously, leading to delayed diagnosis and treatment. They had to be more active than they wished to obtain information/treatment. Parents preferred sharing decisions with their doctor. Conclusions: Parents caring for infants with AD have clearly defined, unmet information needs, forcing them into more active roles in the treatment decision-making process than they desire. The study-findings may inform the development of written information specifically for these parents and improve partnership during consultations.

Original languageEnglish
Pages (from-to)938-943
Number of pages6
JournalAllergy: European Journal of Allergy and Clinical Immunology
Volume60
Issue number7
Early online date9 May 2005
DOIs
Publication statusPublished - 1 Jul 2005
Externally publishedYes

Fingerprint

Atopic Dermatitis
Decision Making
Parents
Therapeutics
Interviews
Delayed Diagnosis
Causality
Referral and Consultation
Diet
Delivery of Health Care

Cite this

@article{651cb90b9a0045fa808076d9b7d02011,
title = "The information needs and preferred roles in treatment decision-making of parents caring for infants with atopic dermatitis: A qualitative study",
abstract = "Background: Information needs and preferences in treatment decision-making of parents caring for infants with atopic dermatitis (AD) are unknown, despite emphasis on quality information-giving and involvement of health-care users in treatment decisions. Objective: To explore information needs and decisional role-preferences of parents caring for infants with AD. Methods: Qualitative study. Purposive sample: 31 parents caring for infants with AD. Tape-recorded focussed conversation-style interviews. Interview topic-guide literature-derived. Control Preferences Scale (5 sort-card vignettes 'very active' to 'very passive' role) adapted for use with parents; used to facilitate discussion. Thematic analysis of verbatim transcripts. Results: Nine core information needs identified: AD-causation, role of diet, medication-use, medication-side-effects, exacerbating factors, new/alternative medication, nonpharmacological treatments, AD-prevention, AD and other atopic conditions. Parents desired verbal and written information. Many felt their baby's condition was not taken seriously, leading to delayed diagnosis and treatment. They had to be more active than they wished to obtain information/treatment. Parents preferred sharing decisions with their doctor. Conclusions: Parents caring for infants with AD have clearly defined, unmet information needs, forcing them into more active roles in the treatment decision-making process than they desire. The study-findings may inform the development of written information specifically for these parents and improve partnership during consultations.",
keywords = "Atopic dermatitis, Atopic eczema, Decision making, Infants, parents, Information needs, Qualitative study",
author = "C. Gore and Johnson, {R. J.} and Caress, {A. L.} and A. Woodcock and A. Custovic",
year = "2005",
month = "7",
day = "1",
doi = "10.1111/j.1398-9995.2005.00776.x",
language = "English",
volume = "60",
pages = "938--943",
journal = "Allergy: European Journal of Allergy and Clinical Immunology",
issn = "0105-4538",
publisher = "Wiley-Blackwell",
number = "7",

}

The information needs and preferred roles in treatment decision-making of parents caring for infants with atopic dermatitis : A qualitative study. / Gore, C.; Johnson, R. J.; Caress, A. L.; Woodcock, A.; Custovic, A.

In: Allergy: European Journal of Allergy and Clinical Immunology, Vol. 60, No. 7, 01.07.2005, p. 938-943.

Research output: Contribution to journalArticle

TY - JOUR

T1 - The information needs and preferred roles in treatment decision-making of parents caring for infants with atopic dermatitis

T2 - A qualitative study

AU - Gore, C.

AU - Johnson, R. J.

AU - Caress, A. L.

AU - Woodcock, A.

AU - Custovic, A.

PY - 2005/7/1

Y1 - 2005/7/1

N2 - Background: Information needs and preferences in treatment decision-making of parents caring for infants with atopic dermatitis (AD) are unknown, despite emphasis on quality information-giving and involvement of health-care users in treatment decisions. Objective: To explore information needs and decisional role-preferences of parents caring for infants with AD. Methods: Qualitative study. Purposive sample: 31 parents caring for infants with AD. Tape-recorded focussed conversation-style interviews. Interview topic-guide literature-derived. Control Preferences Scale (5 sort-card vignettes 'very active' to 'very passive' role) adapted for use with parents; used to facilitate discussion. Thematic analysis of verbatim transcripts. Results: Nine core information needs identified: AD-causation, role of diet, medication-use, medication-side-effects, exacerbating factors, new/alternative medication, nonpharmacological treatments, AD-prevention, AD and other atopic conditions. Parents desired verbal and written information. Many felt their baby's condition was not taken seriously, leading to delayed diagnosis and treatment. They had to be more active than they wished to obtain information/treatment. Parents preferred sharing decisions with their doctor. Conclusions: Parents caring for infants with AD have clearly defined, unmet information needs, forcing them into more active roles in the treatment decision-making process than they desire. The study-findings may inform the development of written information specifically for these parents and improve partnership during consultations.

AB - Background: Information needs and preferences in treatment decision-making of parents caring for infants with atopic dermatitis (AD) are unknown, despite emphasis on quality information-giving and involvement of health-care users in treatment decisions. Objective: To explore information needs and decisional role-preferences of parents caring for infants with AD. Methods: Qualitative study. Purposive sample: 31 parents caring for infants with AD. Tape-recorded focussed conversation-style interviews. Interview topic-guide literature-derived. Control Preferences Scale (5 sort-card vignettes 'very active' to 'very passive' role) adapted for use with parents; used to facilitate discussion. Thematic analysis of verbatim transcripts. Results: Nine core information needs identified: AD-causation, role of diet, medication-use, medication-side-effects, exacerbating factors, new/alternative medication, nonpharmacological treatments, AD-prevention, AD and other atopic conditions. Parents desired verbal and written information. Many felt their baby's condition was not taken seriously, leading to delayed diagnosis and treatment. They had to be more active than they wished to obtain information/treatment. Parents preferred sharing decisions with their doctor. Conclusions: Parents caring for infants with AD have clearly defined, unmet information needs, forcing them into more active roles in the treatment decision-making process than they desire. The study-findings may inform the development of written information specifically for these parents and improve partnership during consultations.

KW - Atopic dermatitis

KW - Atopic eczema

KW - Decision making

KW - Infants, parents

KW - Information needs

KW - Qualitative study

UR - http://www.scopus.com/inward/record.url?scp=20444456324&partnerID=8YFLogxK

U2 - 10.1111/j.1398-9995.2005.00776.x

DO - 10.1111/j.1398-9995.2005.00776.x

M3 - Article

VL - 60

SP - 938

EP - 943

JO - Allergy: European Journal of Allergy and Clinical Immunology

JF - Allergy: European Journal of Allergy and Clinical Immunology

SN - 0105-4538

IS - 7

ER -