'I'd like to know what causes it, you know, anything I've done?' Are we meeting the information and support needs of patients with macular degeneration? A qualitative study

A.E. Burton, R.L. Shaw, J.M. Gibson

Research output: Contribution to journalArticle

Abstract

Objective: To examine patients' experiences of information and support provision for age-related macular degeneration (AMD) in the UK. Study design: Exploratory qualitative study investigating patient experiences of healthcare consultations and living with AMD over 18 months. Setting: Specialist eye clinics at a Birmingham hospital. Participants: 13 patients diagnosed with AMD. Main outcome measures: Analysis of patients' narratives to identify key themes and issues relating to information and support needs. Results: Information was accessed from a variety of sources. There was evidence of clear information deficits prior to diagnosis, following diagnosis and ongoing across the course of the condition. Patients were often ill informed and therefore unable to self-advocate and recognise when support was needed, what support was available and how to access support. Conclusions: AMD patients have a variety of information needs that are variable across the course of the condition. Further research is needed to determine whether these experiences are typical and identify ways of translating the guidelines into practice. Methods of providing information need to be investigated and improved for this patient group.

LanguageEnglish
Article number36
JournalBMJ Open
Volume3
Issue number11
DOIs
Publication statusPublished - 27 Nov 2013

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Macular Degeneration
Practice Guidelines
Referral and Consultation
Outcome Assessment (Health Care)
Delivery of Health Care
Research

Bibliographical note

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 3.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/3.0/

Cite this

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title = "'I'd like to know what causes it, you know, anything I've done?' Are we meeting the information and support needs of patients with macular degeneration? A qualitative study",
abstract = "Objective: To examine patients' experiences of information and support provision for age-related macular degeneration (AMD) in the UK. Study design: Exploratory qualitative study investigating patient experiences of healthcare consultations and living with AMD over 18 months. Setting: Specialist eye clinics at a Birmingham hospital. Participants: 13 patients diagnosed with AMD. Main outcome measures: Analysis of patients' narratives to identify key themes and issues relating to information and support needs. Results: Information was accessed from a variety of sources. There was evidence of clear information deficits prior to diagnosis, following diagnosis and ongoing across the course of the condition. Patients were often ill informed and therefore unable to self-advocate and recognise when support was needed, what support was available and how to access support. Conclusions: AMD patients have a variety of information needs that are variable across the course of the condition. Further research is needed to determine whether these experiences are typical and identify ways of translating the guidelines into practice. Methods of providing information need to be investigated and improved for this patient group.",
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