Development of a co-designed written resource for carers of patients with heart failure

Research output: Contribution to journalMeeting abstract

Abstract

Background:
There is growing evidence that carers of patients with heart failure
(HF) have unique unmet needs that impair their own quality of life and potentially that of their loved one. Studies found carers requested better communication with healthcare professionals, more information on symptoms and current and future management . A recent systematic review found that a written material was a common and useful resource that could significantly improve a range of carer outcomes including quality of life, depression and HF knowledge. Indeed, there is an urgent clinical need for tailored information and support that would suitably equip carers in their daily care-giving role.

Purpose:
To co-design a written resource for carers of patients with heart failure.

Methods:
All written resources available for carers and published in English were
retrieved. Booklets from organisations including Northern Ireland Chest Heart and Stroke, British Heart Foundation and Irish Heart Foundation were analysed, along with online information available from HeartFailureMatters.org. Key topics were combined with those that were considered important from studies included within a recently completed systematic review.

Results:
No information booklets were found that were designed exclusively for
carers of patients with HF. The resources that were found were primarily targeted towards patients, with brief information sections for carers consisting of 2-3 pages at the back. They provided general information on areas such as the financial implications of becoming a carer, symptoms of HF, managing medications and dealing with emotions that may be experienced such as depression and stress. Topics that were considered important from written resources used within studies included in a systematic review included: communicating with the patient in a positive and motivating way, practical skills to assist with self-management at home, palliative care and problem-solving skills. Following feedback and discussions with key stakeholders made up of carers of patients with HF and health care professionals, a written booklet was developed.
The booklet comprises of five chapters:
1. What is heart failure? 2. Your role as a carer, 3. Looking after yourself,4. Communication and 5. Planning for the future.

Conclusion:
There are currently no written resources specifically designed for
carers of patients with HF. This innovative and co-designed resource is unique for carers and will be piloted among carers across Northern Ireland. It provides useful information with key contact numbers to signpost carers to further support and adds to the information currently available online for carers. It has the potential to influence clinical practice and could be a useful information tool that health care professionals managing HF can disseminate.
Original languageEnglish
Pages (from-to)p95
Number of pages1
JournalEuropean Journal of Heart Failure
Volume21
Issue numberS1
DOIs
Publication statusPublished - 26 May 2019

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Caregivers
Heart Failure
Pamphlets
Northern Ireland
Delivery of Health Care
Communication
Quality of Life
Depression
Home Care Services
Self Care
Palliative Care
Emotions
Thorax
Stroke
Organizations

Cite this

@article{88ef662a00da4f41a5430796a54a00f3,
title = "Development of a co-designed written resource for carers of patients with heart failure",
abstract = "Background:There is growing evidence that carers of patients with heart failure(HF) have unique unmet needs that impair their own quality of life and potentially that of their loved one. Studies found carers requested better communication with healthcare professionals, more information on symptoms and current and future management . A recent systematic review found that a written material was a common and useful resource that could significantly improve a range of carer outcomes including quality of life, depression and HF knowledge. Indeed, there is an urgent clinical need for tailored information and support that would suitably equip carers in their daily care-giving role.Purpose:To co-design a written resource for carers of patients with heart failure.Methods:All written resources available for carers and published in English wereretrieved. Booklets from organisations including Northern Ireland Chest Heart and Stroke, British Heart Foundation and Irish Heart Foundation were analysed, along with online information available from HeartFailureMatters.org. Key topics were combined with those that were considered important from studies included within a recently completed systematic review.Results:No information booklets were found that were designed exclusively forcarers of patients with HF. The resources that were found were primarily targeted towards patients, with brief information sections for carers consisting of 2-3 pages at the back. They provided general information on areas such as the financial implications of becoming a carer, symptoms of HF, managing medications and dealing with emotions that may be experienced such as depression and stress. Topics that were considered important from written resources used within studies included in a systematic review included: communicating with the patient in a positive and motivating way, practical skills to assist with self-management at home, palliative care and problem-solving skills. Following feedback and discussions with key stakeholders made up of carers of patients with HF and health care professionals, a written booklet was developed. The booklet comprises of five chapters: 1. What is heart failure? 2. Your role as a carer, 3. Looking after yourself,4. Communication and 5. Planning for the future.Conclusion:There are currently no written resources specifically designed forcarers of patients with HF. This innovative and co-designed resource is unique for carers and will be piloted among carers across Northern Ireland. It provides useful information with key contact numbers to signpost carers to further support and adds to the information currently available online for carers. It has the potential to influence clinical practice and could be a useful information tool that health care professionals managing HF can disseminate.",
author = "Lorna Cassidy and Loreena Hill and Donna Fitzsimons",
year = "2019",
month = "5",
day = "26",
doi = "10.1002/ejhf.1488",
language = "English",
volume = "21",
pages = "p95",
journal = "European journal of heart failure : journal of the Working Group on Heart Failure of the European So",
issn = "1388-9842",
publisher = "Oxford University Press",
number = "S1",

}

TY - JOUR

T1 - Development of a co-designed written resource for carers of patients with heart failure

AU - Cassidy, Lorna

AU - Hill, Loreena

AU - Fitzsimons, Donna

PY - 2019/5/26

Y1 - 2019/5/26

N2 - Background:There is growing evidence that carers of patients with heart failure(HF) have unique unmet needs that impair their own quality of life and potentially that of their loved one. Studies found carers requested better communication with healthcare professionals, more information on symptoms and current and future management . A recent systematic review found that a written material was a common and useful resource that could significantly improve a range of carer outcomes including quality of life, depression and HF knowledge. Indeed, there is an urgent clinical need for tailored information and support that would suitably equip carers in their daily care-giving role.Purpose:To co-design a written resource for carers of patients with heart failure.Methods:All written resources available for carers and published in English wereretrieved. Booklets from organisations including Northern Ireland Chest Heart and Stroke, British Heart Foundation and Irish Heart Foundation were analysed, along with online information available from HeartFailureMatters.org. Key topics were combined with those that were considered important from studies included within a recently completed systematic review.Results:No information booklets were found that were designed exclusively forcarers of patients with HF. The resources that were found were primarily targeted towards patients, with brief information sections for carers consisting of 2-3 pages at the back. They provided general information on areas such as the financial implications of becoming a carer, symptoms of HF, managing medications and dealing with emotions that may be experienced such as depression and stress. Topics that were considered important from written resources used within studies included in a systematic review included: communicating with the patient in a positive and motivating way, practical skills to assist with self-management at home, palliative care and problem-solving skills. Following feedback and discussions with key stakeholders made up of carers of patients with HF and health care professionals, a written booklet was developed. The booklet comprises of five chapters: 1. What is heart failure? 2. Your role as a carer, 3. Looking after yourself,4. Communication and 5. Planning for the future.Conclusion:There are currently no written resources specifically designed forcarers of patients with HF. This innovative and co-designed resource is unique for carers and will be piloted among carers across Northern Ireland. It provides useful information with key contact numbers to signpost carers to further support and adds to the information currently available online for carers. It has the potential to influence clinical practice and could be a useful information tool that health care professionals managing HF can disseminate.

AB - Background:There is growing evidence that carers of patients with heart failure(HF) have unique unmet needs that impair their own quality of life and potentially that of their loved one. Studies found carers requested better communication with healthcare professionals, more information on symptoms and current and future management . A recent systematic review found that a written material was a common and useful resource that could significantly improve a range of carer outcomes including quality of life, depression and HF knowledge. Indeed, there is an urgent clinical need for tailored information and support that would suitably equip carers in their daily care-giving role.Purpose:To co-design a written resource for carers of patients with heart failure.Methods:All written resources available for carers and published in English wereretrieved. Booklets from organisations including Northern Ireland Chest Heart and Stroke, British Heart Foundation and Irish Heart Foundation were analysed, along with online information available from HeartFailureMatters.org. Key topics were combined with those that were considered important from studies included within a recently completed systematic review.Results:No information booklets were found that were designed exclusively forcarers of patients with HF. The resources that were found were primarily targeted towards patients, with brief information sections for carers consisting of 2-3 pages at the back. They provided general information on areas such as the financial implications of becoming a carer, symptoms of HF, managing medications and dealing with emotions that may be experienced such as depression and stress. Topics that were considered important from written resources used within studies included in a systematic review included: communicating with the patient in a positive and motivating way, practical skills to assist with self-management at home, palliative care and problem-solving skills. Following feedback and discussions with key stakeholders made up of carers of patients with HF and health care professionals, a written booklet was developed. The booklet comprises of five chapters: 1. What is heart failure? 2. Your role as a carer, 3. Looking after yourself,4. Communication and 5. Planning for the future.Conclusion:There are currently no written resources specifically designed forcarers of patients with HF. This innovative and co-designed resource is unique for carers and will be piloted among carers across Northern Ireland. It provides useful information with key contact numbers to signpost carers to further support and adds to the information currently available online for carers. It has the potential to influence clinical practice and could be a useful information tool that health care professionals managing HF can disseminate.

U2 - 10.1002/ejhf.1488

DO - 10.1002/ejhf.1488

M3 - Meeting abstract

VL - 21

SP - p95

JO - European journal of heart failure : journal of the Working Group on Heart Failure of the European So

JF - European journal of heart failure : journal of the Working Group on Heart Failure of the European So

SN - 1388-9842

IS - S1

ER -