Editorial. Reasons to welcome this new journal

<abstract xmlns="http://www.w3.org/1999/xhtml"> Prophylaxis with factor VIII concentrates is beneficial for adults with severe haemophilia A, but prophylaxis regimens are costly. Guidelines recommend personalised prophylaxis tailored to bleeding phenotype and the result of pharmacokinetic assessments. This article describes a project in which specialist nurses played a pivotal role in identifying a small cohort of patients eligible for dose reduction. Nurses monitored patients following dose reduction, maintaining contact in order to address fears and ensure patient safety. The project led to a substantial cost saving for the Trust and demonstrates the value that nurses can bring to the haemophilia centre.</abstract>

How specialist nurse-led care can help to lower the costs of prophylaxis

<abstract xmlns="http://www.w3.org/1999/xhtml"> Haemophilia A is an X-linked congenital bleeding disorder resulting from a deficiency of factor VIII (FVIII). Therapy to prevent or treat bleeding is by replacement of the missing FVIII. However, as a consequence of treatment, patients with HA may develop inhibitory IgG antibodies to FVIII, termed “inhibitors”. When this occurs, treatment becomes more complex and costly and morbidity increases. Inhibitor formation, occurring in up to 36% of patients with severe HA, is currently one of the most significant complications affecting patients with HA [1,2]. In these two case studies, the management of bleeds in patients with inhibitors, and the long-term inhibitor eradication will be discussed.</abstract>

Successful immune tolerance in two children with severe haemophilia A

<abstract xmlns="http://www.w3.org/1999/xhtml"> Two articles in this launch issue of the journal explore the patient experience of haemophilia. To set the context, Martin Bedford explains the grounded theory method, and gives a brief overview of how and when it might be used in haemophilia research.</abstract>

An introduction to grounded theory

<abstract xml:lang="e" xmlns="http://www.w3.org/1999/xhtml"> Background: Little is known about where, and from whom children with haemophilia receive support, as there is a paucity of psychosocial research on this topic. This paper, part of a larger study of living with haemophilia, discusses the importance of social support for boys with haemophilia. Methods: Data were collected from 30 boys aged 4-17 years with severe haemophilia A or B from a single Haemophilia Comprehensive Care Centre in the United Kingdom. Age appropriate participatory qualitative research techniques: photo-elicitation, draw and write, focus groups and individual interviews were used. All data were transcribed and the content was analysed using grounded theory. Results: Social support was gained in many ways from individuals who were identified by the study participants as supportive. These included parents, siblings (affected themselves or not), family members (who may also be affected) and friends. Being able to share experiences with others was also described as supportive. Conclusion: The boys in this study described many sources of social support, which changed over time as they grew older. Commentary, J Haem Pract 2014;1(1):23.</abstract>

‘I can always rely on them’: the importance of social support for boys with haemophilia

<abstract xmlns="http://www.w3.org/1999/xhtml"> This study examined the perception of the quality of life in a small group of boys (aged 8-15) who have severe haemophilia and have also developed inhibitors and their parents. The study design was a qualitative research methodology using a phenomenology theory approach in order to gain perspectives from participants in a series of semi-structured interviews. The study showed that inhibitor development had an impact on the perceived quality of life of these boys and their families and in so doing threatened the coping mechanisms that had worked effectively for them in the past. Although there is adequate awareness among haemophilia treaters of the psychosocial impact of inhibitor development on family life, this may not always be seen as a priority when managing these boys. The study also identified gaps in the published evidence as well as scope for future study. Commentary, J Haem Pract 2014;1(1):23.</abstract>

Boys and parents’ perceptions of living with haemophilia and an inhibitor

Nurse-led research offers unique insights into patients’ psychosocial concerns

<abstract xmlns="http://www.w3.org/1999/xhtml"> Background: A broad scoping exercise was undertaken to assess and quantify haemophilia nursing care in Europe. Methods: A web-based survey in English was sent to known networks of haemophilia nurses working in Europe. This survey included questions concerning the haemophilia treatment centre, educational level, work activities, gaining knowledge/ expertise and development in the future. Results: In total, 94 nurses in 14 countries in Europe completed the survey. Overall, the majority (62%) of the nurses had over 20 years’ nursing experience, with 44% having more than 10 years’ experience in haemophilia. The educational level varied; with highest educational level of attainment being 41% at nondegree level nursing entry qualification, 35% BSc and 24% MSc. 21% worked in a centre where they treat only children, 26% only adults and 53% both. All had good access to treatment. The core activities (rated >80%) of a haemophilia nurse were: prepare and administer medication, venepuncture and CVADuse (except cannulation), providing education and telephone advice, coordination of (multidisciplinary) care and assistance with clinical trials. Furthermore, 35% stated that they initiated and performed nurse-led research. In the future, almost all nurses would like to develop their expertise and knowledge base by studying at Masters level and above, to have more responsibility, and to conduct research. Conclusion: This scoping exercise provides a baseline assessment of haemophilia nursing across Europe. The results may provide a basis for a more thorough investigation of the current role and the principles of haemophilia nursing care; future opportunities, and the training requirements to develop the specialty.</abstract>

The role of the European haemophilia nurse

<abstract xmlns="http://www.w3.org/1999/xhtml"> Haemophilia nursing is a relatively young specialty. For early nurses like Maureen Fearns there was no roadmap. She recalls the birth and early tribulations of the HNA</abstract>

How nurses built a specialty from scratch

<abstract xmlns="http://www.w3.org/1999/xhtml"> The role of the nurse continues to develop, probably at greater speed than ever before. Would Florence Nightingale ever have dreamt of nurses who could manage whole episodes of patient care from diagnosis, through admission, requesting investigations, prescribing treatments and evaluating outcomes? She probably did - when she instigated the first nursing outcome measures looking at infection control. Nurses can and do, do most things. What is important is that they are appropriately trained and continue to develop skills, that are relevant both to them and the patients for whom they care. Assessing this ability, or competence, requires knowledge and skills in itself. In this paper we describe the process of defining competence in haemophilia nursing. Some of these competencies are transferable from other areas of nursing, others are haemophilia-specific. Together they provide a personal development framework for nurses who work within haemophilia as part or all of their role.</abstract>

A core competency framework for haemophilia nurses in the UK

<abstract xmlns="http://www.w3.org/1999/xhtml"> Kate Forsyth recounts her experiences of a WFH twinning programme with Bangladesh and reveals that where learning is concerned, twinning is a two-way street</abstract>

Building a bridge to Bangladesh

<abstract xmlns="http://www.w3.org/1999/xhtml"> Brian O’Mahony, Chief Executive of the Irish Haemophilia Society and President of the European Haemophilia Consortium, tells Jenny Bryan about the special role that nurses play within the haemophilia community</abstract>

Nurses should become more involved in haemophilia research

<abstract xmlns="http://www.w3.org/1999/xhtml">Olivia Timbs was editor of The Pharmaceutical Journal from 2001 to 2012 and in the past wrote regularly for The Times, The Observer and The Independent. Here she offers some simple tips to help you write effectively</abstract>

Tips to help you write effectively

<abstract xmlns="http://www.w3.org/1999/xhtml"> Trish Bell is rapidly making a name for herself as the HNA’s resident poet. Here, in her own inimtable way, she tells us of her path towards haemophilia nursing</abstract>

The bleeding nurse who discovered verse

AHEAD OF PRINT

Volume 11 (2024): Issue 1 (January 2024)

Volume 10 (2023): Issue 1 (January 2023)

Volume 9 (2022): Issue 1 (January 2022)

Volume 8 (2021): Issue 1 (January 2021)

Volume 7 (2020): Issue 1 (January 2020)

Volume 6 (2019): Issue 2 (January 2019)

Volume 6 (2019): Issue 1 (January 2019)

Volume 5 (2018): Issue 1 (April 2018)

Volume 4 (2017): Issue 1 (January 2017)

Volume 3 (2016): Issue 2 (July 2016)

Volume 3 (2016): Issue 1 (January 2016)

Volume 2 (2015): Issue 2 (July 2015)

Volume 2 (2015): Issue 1 (March 2015)

Volume 1 (2014): Issue 3 (October 2014)

Volume 1 (2013): Issue 2 (May 2013)

Volume 1 (2013): Issue 1 (January 2013)

The Journal of Haemophilia Practice

 The Journal of Haemophilia Practice is an international, open-access, peer-reviewed journal that aims to provide a forum for all members of the multidisciplinary bleeding disorders care team.   It is now widely recognised that the care and management of people with haemophilia and other rare bleeding disorders should always be based on a multidisciplinary approach, with value placed on the specific expertise brought by allied health care professionals, including nurses, physiotherapists, data managers, social workers, and psychologists. We believe that sharing experience on evidence-based care, and understanding the lived experience of rare bleeding disorders, helps to promote expertise and benefits patients.   Any manuscript that is relevant to current bleeding disorders care and practice will be considered for review and publication. To this end, we positively welcome:        Original research    Case reports    Case series    Methodology papers   Reviews in any field of bleeding disorders of relevance to current clinical practice   Clinical Updates that describe current advances in any clinical field related to bleeding disorders   Editorials that address a particular topic of current interest.   Outcomes research written by and/or with individuals affected by bleeding disorders    Please note that case reports should meet the standards outlined in the CARE Case Report Guidelines. Authors submitting case reports are advised to consult the CARE Checklist.   Manuscripts should be submitted to The Journal of Haemophilia Practice via ScholarOne (see Submit). All manuscripts will first be subject to a technical review, including a quality check of all files submitted and including a plagiarism check. Manuscripts will then be reviewed by the Editor-in-Chief, who will decide whether or not to proceed to peer review. The journal operates a double-blind peer review process. The review procedure will result in one of four decisions:        Immediate accept   Minor revision   Major revision   Reject        The editorial decision will be communicated to the authors as soon as the review process has been finalised. In case of revisions, the revised article may be sent back to review before a decision is made on acceptance.   The estimated time from manuscript submission to first decision is 4 to 6 weeks and from the final revision to acceptance is approximately 2 weeks. The authors will receive a proof of their article in order to confirm the accuracy of the text prior to publication.   Copyright and Licensing   All articles published in The Journal of Haemophilia Practice are open access. From 2024 onwards, articles are distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International license (CC BY-NC-ND 4.0) which permits use and distribution in any medium provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.   Fees and Funding   The Journal of Haemophilia Practice is owned, managed and funded by Haemnet Ltd.     The journal has no author submission charges. From 1 January 2024, to help cover the publishing costs of the journal, article processing charges (APCs) will be applied to manuscripts accepted for publication. APC waivers are available in some circumstances. Full details can be found in the journal’s Editorial Policies and Publication Ethics.   Plagiarism Policy   We are committed to ensuring that content published in The Journal of Haemophilia Practice is original and trustworthy. All manuscripts submitted to the journal are screened using iThenticate similarity checking software as part of a process that aims to eliminate plagiarism and provide a high standard, quality peer-review process.   For further information on the journal’s editorial policies and publication ethics, please see documentation listed under the ‘For Authors’ tab.   Archiving   Sciendo archives the contents of this journal in Portico, a long-term digital preservation service for scholarly books, journals, and collections. 

The Journal of Haemophilia Practice

Volume 1 (2013): Issue 1 (January 2013)

Editorial

Editorial. Reasons to welcome this new journal

Case Study

How specialist nurse-led care can help to lower the costs of prophylaxis

Successful immune tolerance in two children with severe haemophilia A

Research Tools

An introduction to grounded theory

Clinical Research

‘I can always rely on them’: the importance of social support for boys with haemophilia

Boys and parents’ perceptions of living with haemophilia and an inhibitor

Commentary

Nurse-led research offers unique insights into patients’ psychosocial concerns

Haemophilia Nursing

The role of the European haemophilia nurse

How nurses built a specialty from scratch

A core competency framework for haemophilia nurses in the UK

World View

Building a bridge to Bangladesh

In My View

Nurses should become more involved in haemophilia research

New Skills

Tips to help you write effectively

Poet's Corner

The bleeding nurse who discovered verse

Cerca

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