Edizioni

Rivista e Edizione

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

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

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

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

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

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

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

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

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

Volume 2 (2015): Edizione 2 (July 2015)

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

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

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

Volume 1 (2013): Edizione 1 (January 2013)

Dettagli della rivista
Formato
Rivista
eISSN
2055-3390
Pubblicato per la prima volta
22 Dec 2017
Periodo di pubblicazione
1 volta all'anno
Lingue
Inglese

Cerca

Volume 1 (2013): Edizione 1 (January 2013)

Dettagli della rivista
Formato
Rivista
eISSN
2055-3390
Pubblicato per la prima volta
22 Dec 2017
Periodo di pubblicazione
1 volta all'anno
Lingue
Inglese

Cerca

14 Articoli

Editorial

access type Accesso libero

Editorial. Reasons to welcome this new journal

Pubblicato online: 21 Apr 2018
Pagine: 1 - 1

Astratto

Case Study

access type Accesso libero

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

Pubblicato online: 21 Apr 2018
Pagine: 2 - 4

Astratto

Abstract

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.

access type Accesso libero

Successful immune tolerance in two children with severe haemophilia A

Pubblicato online: 21 Apr 2018
Pagine: 5 - 7

Astratto

Abstract

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.

Research Tools

access type Accesso libero

An introduction to grounded theory

Pubblicato online: 21 Apr 2018
Pagine: 8 - 9

Astratto

Abstract

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.

Clinical Research

access type Accesso libero

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

Pubblicato online: 21 Apr 2018
Pagine: 10 - 16

Astratto

Abstract

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.

Parole chiave

  • social support
  • haemophilia
  • boys
  • young people
access type Accesso libero

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

Pubblicato online: 21 Apr 2018
Pagine: 17 - 22

Astratto

Abstract

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.

Parole chiave

  • haemophilia
  • inhibitor
  • views
  • quality of life

Commentary

access type Accesso libero

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

Pubblicato online: 21 Apr 2018
Pagine: 23 - 23

Astratto

Haemophilia Nursing

access type Accesso libero

The role of the European haemophilia nurse

Pubblicato online: 21 Apr 2018
Pagine: 24 - 27

Astratto

Abstract

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.

Parole chiave

  • haemophilia
  • haemophilia
  • nursing
  • comprehensive care
  • multidisciplinary
access type Accesso libero

How nurses built a specialty from scratch

Pubblicato online: 21 Apr 2018
Pagine: 28 - 31

Astratto

Abstract

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

access type Accesso libero

A core competency framework for haemophilia nurses in the UK

Pubblicato online: 21 Apr 2018
Pagine: 32 - 36

Astratto

Abstract

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.

Parole chiave

  • haemophilia
  • nursing
  • comprehensive care
  • competency

World View

access type Accesso libero

Building a bridge to Bangladesh

Pubblicato online: 21 Apr 2018
Pagine: 37 - 40

Astratto

Abstract

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

In My View

access type Accesso libero

Nurses should become more involved in haemophilia research

Pubblicato online: 21 Apr 2018
Pagine: 41 - 42

Astratto

New Skills

access type Accesso libero

Tips to help you write effectively

Pubblicato online: 21 Apr 2018
Pagine: 43 - 45

Astratto

Poet's Corner

access type Accesso libero

The bleeding nurse who discovered verse

Pubblicato online: 21 Apr 2018
Pagine: 45 - 45

Astratto

Abstract

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

14 Articoli

Editorial

access type Accesso libero

Editorial. Reasons to welcome this new journal

Pubblicato online: 21 Apr 2018
Pagine: 1 - 1

Astratto

Case Study

access type Accesso libero

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

Pubblicato online: 21 Apr 2018
Pagine: 2 - 4

Astratto

Abstract

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.

access type Accesso libero

Successful immune tolerance in two children with severe haemophilia A

Pubblicato online: 21 Apr 2018
Pagine: 5 - 7

Astratto

Abstract

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.

Research Tools

access type Accesso libero

An introduction to grounded theory

Pubblicato online: 21 Apr 2018
Pagine: 8 - 9

Astratto

Abstract

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.

Clinical Research

access type Accesso libero

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

Pubblicato online: 21 Apr 2018
Pagine: 10 - 16

Astratto

Abstract

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.

Parole chiave

  • social support
  • haemophilia
  • boys
  • young people
access type Accesso libero

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

Pubblicato online: 21 Apr 2018
Pagine: 17 - 22

Astratto

Abstract

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.

Parole chiave

  • haemophilia
  • inhibitor
  • views
  • quality of life

Commentary

access type Accesso libero

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

Pubblicato online: 21 Apr 2018
Pagine: 23 - 23

Astratto

Haemophilia Nursing

access type Accesso libero

The role of the European haemophilia nurse

Pubblicato online: 21 Apr 2018
Pagine: 24 - 27

Astratto

Abstract

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.

Parole chiave

  • haemophilia
  • haemophilia
  • nursing
  • comprehensive care
  • multidisciplinary
access type Accesso libero

How nurses built a specialty from scratch

Pubblicato online: 21 Apr 2018
Pagine: 28 - 31

Astratto

Abstract

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

access type Accesso libero

A core competency framework for haemophilia nurses in the UK

Pubblicato online: 21 Apr 2018
Pagine: 32 - 36

Astratto

Abstract

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.

Parole chiave

  • haemophilia
  • nursing
  • comprehensive care
  • competency

World View

access type Accesso libero

Building a bridge to Bangladesh

Pubblicato online: 21 Apr 2018
Pagine: 37 - 40

Astratto

Abstract

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

In My View

access type Accesso libero

Nurses should become more involved in haemophilia research

Pubblicato online: 21 Apr 2018
Pagine: 41 - 42

Astratto

New Skills

access type Accesso libero

Tips to help you write effectively

Pubblicato online: 21 Apr 2018
Pagine: 43 - 45

Astratto

Poet's Corner

access type Accesso libero

The bleeding nurse who discovered verse

Pubblicato online: 21 Apr 2018
Pagine: 45 - 45

Astratto

Abstract

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

Pianifica la tua conferenza remota con Sciendo