Editorial
Consultant Editor Bridget Johnston Editor Jennifer Franklin Commercial Manager Barry Maguire Associate Publisher, Medical Education Tracy Cowan Associate Publisher Julie Smith Publishing Director Anthony Kerr Production Manager Jon Redmayne Circulation Director Sally Boettcher Managing Director Jon Benson Chief Executive Officer Ben Allen Editorial enquiries: [email protected] Sales enquiries: [email protected]
Editorial Board AUSTRALIA Donna Drew Clinical Nurse Consultant, Paediatric Oncology/Palliative Care, Kids Cancer Centre, Sydney Children’s Hospital Jane Phillips Professor Palliative Nursing, The Cunningham Centre for Palliative Care Sydney, Sacred Heart Hospice, and The University of Notre Dame Australia BELARUS Anna Garcakova Director of the Belarusian Children’s Hospice BELGIUM Tine De Vlieger General Coordinator, Palliatieve Hulpverlening Antwerpen, University of Antwerp EIRE Philip Larkin Professor of Clinical Nursing (Palliative Care), School of Nursing, Midwifery and Health Systems and Our Lady’s Hospice Ltd, Health Sciences Centre, University College Dublin, Ireland Julie Ling Head of Strategic Development, LauraLynn Ireland’s Children’s Hospice, Dublin 18 HONG KONG Cecilia Chan Professor and Director, Centre of Behavioural Health, Pokfulam NORTHERN IRELAND Sonja McIlfatrick Reader, Institute of Nursing Research, University of Ulster; Head of Research, All Ireland Institute of Hospice & Palliative Care UGANDA Julia Downing Honorary Professor in Palliative Care, Makerere University, Kampala
Bridget Johnston Professor of Palliative and Supportive Care, Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, University of Nottingham Daniel Kelly RCN Chair of Nursing Research, School of Healthcare Sciences, Cardiff University Diane Laverty Nurse Consultant in Palliative Care, St Joseph’s Hospice, London Carole Mula Macmillan Nurse Consultant in Palliative Care and Professional Lead Nurse for Division of Clinical Support Services, The Christe NHS Foundation Trust, Manchester Brian Nyatanga Senior Lecturer, University of Worcester Julie Skilbeck Senior Lecturer, Sheffield Hallam University Dion Smyth Lecturer-practitioner in Cancer and Palliative Care, Birmingham City University Anna-Marie Stevens Macmillan Nurse Consultant Cancer Palliative Care, The Royal Marsden NHS Foundation Trust, London UNITED STATES Jennifer Baird Harvard-wide Pediatric Health Services Research Fellow, Division of Medicine Critical Care, Department of Medicine, Boston Children’s Hospital Patricia Berry Associate Professor and Associate Director, University of Utah Hartford Center of Geriatric Nursing Excellence, University of Utah College of Nursing
UNITED KINGDOM John Costello Senior Lecturer, University of Manchester
UK Personal subscription rates Quarterly Direct Debit Annual Direct Debit Annual Credit Card 2yr Annual Credit Card 3yr Annual Credit Card
£45 £179 £188 £320 £451
Subscribe online: www.magsubscriptions.com, Subscribe by phone: +44 (0) 1722 716997 Contact [email protected] for institutional pricing The International Journal of Palliative Nursing Journal is published The International of by MA Healthcare Ltd, Palliative Nursing is published by St Jude’s Church,Ltd, MA Healthcare Dulwich Road, London St Jude’s Church, SE24 0PBRoad, London Dulwich Tel: +44 SE24 0PB(0)20 7738 5454 Websites: www.ijpn.co.uk Tel: +44 (0)20 7738 5454
© 2015 MA Healthcare Ltd
Websites: www.ijpn.co.uk
MA Healthcare Ltd is part of the Mark Allen MA Healthcare LtdGroup is part of the Mark Allen Group
www.markallengroup.com
International Journal of Palliative Nursing is indexed on Medline, www.markallengroup.com CINAHL, and the British Nursing Index International Journaldo ofnot Palliative Nursing is indexed The views expressed necessarily represent those of the editor or on Medline, CINAHL, the BritishNursing. NursingAdvertisements Index the International Journaland of Palliative in the © MA Healthcare Ltd, 2014. All rights reserved. journal do not imply endorsement of the products or services advertised. No part of the International Journal of Palliative Nursing may be © MA Healthcare Allsystem, rights reserved. reproduced, storedLtd, in a 2015. retrieval or transmitted in any form No part the International Journal of Palliative Nursing may be or or by anyofmeans electronic, mechanical, photocopying, recording, reproduced, stored prior in a retrieval system, or transmitted in anyDirector. form otherwise without written permission of the Publishing or by any means electronic, mechanical, photocopying, recording, or ISSN 1357-6321 ISSN 1357-6321 Printed by Pensord Press Ltd, Blackwood, Gwent NP12 2YA Printed by Pensord Press Ltd, Blackwood, Gwent NP12 2YA The paper used within this publication has been sourced from Chain-of-Custody certified manufacturers, operating within international environmental standards, to ensure sustainable sourcing of the raw materials, sustainable production and to minimise our carbon footprint.
International Journal of Palliative Nursing 2015, Vol 21, No 1
Confidentiality and qualitative research
A
recent editorial in Qualitative Health Research (Morse and Coulehan, 2015) made me reflect on the issue of how we maintain confidentiality in presentations and publications in nursing and palliative care. As nurses, we are used to maintaining confidentiality regarding clinical practice. Indeed, the Nursing and Midwifery Council (NMC) in the UK states that ‘confidentiality is a fundamental part of professional practice that protects human rights’ (NMC, 2008). In addition, in the UK, registered nurses and midwives adhere to a professional code of conduct, performance and ethics, which states: ●●‘You must respect people’s right to confidentiality ●●You must ensure people are informed about how and why information is shared by those who will be providing their care ●●You must disclose information if you believe someone may be at risk of harm, in line with the law of the country in which you are practising’ (NMC, 2008:3). By definition, qualitative research often contains detailed descriptions of study participants, and the need to reduce identifiers can cause conflict for the author or presenter. Yet breaches in confidentiality shatter the researcher–participant relationship and can damage the publics’ trust in researchers. Research participants sign a consent form to participate in a study, on the understanding that their confidentiality and privacy will be maintained. In a small sample size, even a few demographic features can make a person identifiable. A pseudonym, for example, may not be adequate to protect the identity of a participant when attached to other descriptors or identifiers. For instance, I once worked in a hospice where only one nurse was a man. Even with a pseudonym and change of age, he would have been easily identifiable if the hospice was known to the reader. Authors also often use reference codes for individual participants that may have helped the researcher when analysing the data. These codes are usually only useful to the authors, not to the reader, thus they should not be included in the final article. Although many authors consider changing names of participants as a common practice, other demographic data are also often presented such as age, gender, diagnosis, location or job title and qualifications. Morse and Coulehan (2015) advocate that it is not good practice to list these demographics per participant, particularly in small sample sizes, as this can make a person identifiable. Authors should, therefore, present ages and other demographic tags in groups using data ranges rather than per individual. Location, both the geographical location, as well as the site (hospital, hospice, care home, community) should only be provided in broad terms. Authors should not present any personal characteristics of participants which are not directly relevant to the study findings. This is particularly important when presenting case studies. The key question for authors to consider is, will losing the individual descriptors destroy the integrity of the report? A suggestion of good practice by Morse and Coulehan (2015) is to read your article from the participants’ perspective and assess if privacy has been compromised. IJPN is dedicated to upholding the highest level of research integrity and will be stringent in preserving participant confidentiality in qualitative research.
Bridget Johnston Professor of Palliative and Supportive Care, Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, University of Nottingham Morse JM, Coulehan J (2015) Maintaining confidentiality in qualitative publications. Qual Health Res 25(2): 151–2 Nursing and Midwifery Council (2008) The Code: Standards of Conduct, Performance and Ethics for Nurses and Midwives. http://tiny.cc/wd5hsx (accessed 14 January 2015)
3
onal Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 130.194.020.173 on November 17, 2015. For personal use only. No other uses without permission. . All rights r
Consultant Editor Bridget Johnston Editor Jennifer Franklin Commercial Manager Barry Maguire Associate Publisher, Medical Education Tracy Cowan Associate Publisher Julie Smith Publishing Director Anthony Kerr Production Manager Jon Redmayne Circulation Director Sally Boettcher Managing Director Jon Benson Chief Executive Officer Ben Allen Editorial enquiries: [email protected] Sales enquiries: [email protected]
Editorial Board AUSTRALIA Donna Drew Clinical Nurse Consultant, Paediatric Oncology/Palliative Care, Kids Cancer Centre, Sydney Children’s Hospital Jane Phillips Professor Palliative Nursing, The Cunningham Centre for Palliative Care Sydney, Sacred Heart Hospice, and The University of Notre Dame Australia BELARUS Anna Garcakova Director of the Belarusian Children’s Hospice BELGIUM Tine De Vlieger General Coordinator, Palliatieve Hulpverlening Antwerpen, University of Antwerp EIRE Philip Larkin Professor of Clinical Nursing (Palliative Care), School of Nursing, Midwifery and Health Systems and Our Lady’s Hospice Ltd, Health Sciences Centre, University College Dublin, Ireland Julie Ling Head of Strategic Development, LauraLynn Ireland’s Children’s Hospice, Dublin 18 HONG KONG Cecilia Chan Professor and Director, Centre of Behavioural Health, Pokfulam NORTHERN IRELAND Sonja McIlfatrick Reader, Institute of Nursing Research, University of Ulster; Head of Research, All Ireland Institute of Hospice & Palliative Care UGANDA Julia Downing Honorary Professor in Palliative Care, Makerere University, Kampala
Bridget Johnston Professor of Palliative and Supportive Care, Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, University of Nottingham Daniel Kelly RCN Chair of Nursing Research, School of Healthcare Sciences, Cardiff University Diane Laverty Nurse Consultant in Palliative Care, St Joseph’s Hospice, London Carole Mula Macmillan Nurse Consultant in Palliative Care and Professional Lead Nurse for Division of Clinical Support Services, The Christe NHS Foundation Trust, Manchester Brian Nyatanga Senior Lecturer, University of Worcester Julie Skilbeck Senior Lecturer, Sheffield Hallam University Dion Smyth Lecturer-practitioner in Cancer and Palliative Care, Birmingham City University Anna-Marie Stevens Macmillan Nurse Consultant Cancer Palliative Care, The Royal Marsden NHS Foundation Trust, London UNITED STATES Jennifer Baird Harvard-wide Pediatric Health Services Research Fellow, Division of Medicine Critical Care, Department of Medicine, Boston Children’s Hospital Patricia Berry Associate Professor and Associate Director, University of Utah Hartford Center of Geriatric Nursing Excellence, University of Utah College of Nursing
UNITED KINGDOM John Costello Senior Lecturer, University of Manchester
UK Personal subscription rates Quarterly Direct Debit Annual Direct Debit Annual Credit Card 2yr Annual Credit Card 3yr Annual Credit Card
£45 £179 £188 £320 £451
Subscribe online: www.magsubscriptions.com, Subscribe by phone: +44 (0) 1722 716997 Contact [email protected] for institutional pricing The International Journal of Palliative Nursing Journal is published The International of by MA Healthcare Ltd, Palliative Nursing is published by St Jude’s Church,Ltd, MA Healthcare Dulwich Road, London St Jude’s Church, SE24 0PBRoad, London Dulwich Tel: +44 SE24 0PB(0)20 7738 5454 Websites: www.ijpn.co.uk Tel: +44 (0)20 7738 5454
© 2015 MA Healthcare Ltd
Websites: www.ijpn.co.uk
MA Healthcare Ltd is part of the Mark Allen MA Healthcare LtdGroup is part of the Mark Allen Group
www.markallengroup.com
International Journal of Palliative Nursing is indexed on Medline, www.markallengroup.com CINAHL, and the British Nursing Index International Journaldo ofnot Palliative Nursing is indexed The views expressed necessarily represent those of the editor or on Medline, CINAHL, the BritishNursing. NursingAdvertisements Index the International Journaland of Palliative in the © MA Healthcare Ltd, 2014. All rights reserved. journal do not imply endorsement of the products or services advertised. No part of the International Journal of Palliative Nursing may be © MA Healthcare Allsystem, rights reserved. reproduced, storedLtd, in a 2015. retrieval or transmitted in any form No part the International Journal of Palliative Nursing may be or or by anyofmeans electronic, mechanical, photocopying, recording, reproduced, stored prior in a retrieval system, or transmitted in anyDirector. form otherwise without written permission of the Publishing or by any means electronic, mechanical, photocopying, recording, or ISSN 1357-6321 ISSN 1357-6321 Printed by Pensord Press Ltd, Blackwood, Gwent NP12 2YA Printed by Pensord Press Ltd, Blackwood, Gwent NP12 2YA The paper used within this publication has been sourced from Chain-of-Custody certified manufacturers, operating within international environmental standards, to ensure sustainable sourcing of the raw materials, sustainable production and to minimise our carbon footprint.
International Journal of Palliative Nursing 2015, Vol 21, No 1
Confidentiality and qualitative research
A
recent editorial in Qualitative Health Research (Morse and Coulehan, 2015) made me reflect on the issue of how we maintain confidentiality in presentations and publications in nursing and palliative care. As nurses, we are used to maintaining confidentiality regarding clinical practice. Indeed, the Nursing and Midwifery Council (NMC) in the UK states that ‘confidentiality is a fundamental part of professional practice that protects human rights’ (NMC, 2008). In addition, in the UK, registered nurses and midwives adhere to a professional code of conduct, performance and ethics, which states: ●●‘You must respect people’s right to confidentiality ●●You must ensure people are informed about how and why information is shared by those who will be providing their care ●●You must disclose information if you believe someone may be at risk of harm, in line with the law of the country in which you are practising’ (NMC, 2008:3). By definition, qualitative research often contains detailed descriptions of study participants, and the need to reduce identifiers can cause conflict for the author or presenter. Yet breaches in confidentiality shatter the researcher–participant relationship and can damage the publics’ trust in researchers. Research participants sign a consent form to participate in a study, on the understanding that their confidentiality and privacy will be maintained. In a small sample size, even a few demographic features can make a person identifiable. A pseudonym, for example, may not be adequate to protect the identity of a participant when attached to other descriptors or identifiers. For instance, I once worked in a hospice where only one nurse was a man. Even with a pseudonym and change of age, he would have been easily identifiable if the hospice was known to the reader. Authors also often use reference codes for individual participants that may have helped the researcher when analysing the data. These codes are usually only useful to the authors, not to the reader, thus they should not be included in the final article. Although many authors consider changing names of participants as a common practice, other demographic data are also often presented such as age, gender, diagnosis, location or job title and qualifications. Morse and Coulehan (2015) advocate that it is not good practice to list these demographics per participant, particularly in small sample sizes, as this can make a person identifiable. Authors should, therefore, present ages and other demographic tags in groups using data ranges rather than per individual. Location, both the geographical location, as well as the site (hospital, hospice, care home, community) should only be provided in broad terms. Authors should not present any personal characteristics of participants which are not directly relevant to the study findings. This is particularly important when presenting case studies. The key question for authors to consider is, will losing the individual descriptors destroy the integrity of the report? A suggestion of good practice by Morse and Coulehan (2015) is to read your article from the participants’ perspective and assess if privacy has been compromised. IJPN is dedicated to upholding the highest level of research integrity and will be stringent in preserving participant confidentiality in qualitative research.
Bridget Johnston Professor of Palliative and Supportive Care, Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, University of Nottingham Morse JM, Coulehan J (2015) Maintaining confidentiality in qualitative publications. Qual Health Res 25(2): 151–2 Nursing and Midwifery Council (2008) The Code: Standards of Conduct, Performance and Ethics for Nurses and Midwives. http://tiny.cc/wd5hsx (accessed 14 January 2015)
3
onal Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 130.194.020.173 on November 17, 2015. For personal use only. No other uses without permission. . All rights r
