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 (2014): Edizione 3 (October 2014)

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

13 Articoli

Editorial

Accesso libero

We must tackle inequalities in care

Pubblicato online: 21 Apr 2018
Pagine: 1 - 1

Astratto

Accesso libero

A care pathway to cut your teeth on

Pubblicato online: 21 Apr 2018
Pagine: 2 - 2

Astratto

Policy and Practice

Accesso libero

A dental care pathway for children with inherited bleeding disorders

Pubblicato online: 21 Apr 2018
Pagine: 3 - 6

Astratto

Abstract

Royal London Hospital is a major referral centre for children with inherited bleeding disorders (IBD). Dental caries and periodontal disease can be prevented, which is especially important in these children to avoid invasive treatment. For this reason a care pathway has been established, focusing on appropriate prevention advice and treatment A Paediatric Dental Specialist attends the monthly Paediatric Haematology clinics. Children are screened for untreated dental decay and preventive dental advice is given verbally along with a patient information leaflet. At the clinic, a letter is sent out to the patient’s general dental practitioner (GDP). Nonregistered patients are directed to NHS Choices website to find a local NHS GDP. Liaison of GDPs with both haematology and hospital paediatric dental services is actively encouraged to support the provision of dental care within the primary care setting, particularly routine preventive care. Depending on the severity of the bleeding diathesis and the degree of invasive dental treatment required, the GDP may undertake simple treatment or, in more complex cases, may arrange a referral to the Royal London Dental Hospital. A consultation process takes place between paediatric dentist, paediatric haematologist and specialist nurse to determine the most appropriate haematological cover for each patient. This will depend on the severity of the bleeding disorder, the complexity of dental treatment and the need for local anaesthesia. The date of the dental visits and the haemostatic cover are requested via the electronic patient record so that it is accessible to all clinicians involved in their care without the need to retrieve their paper notes. This pathway encourages active involvement of the patients’ GDP and allows the patient to be treated as safely as possible in a timely manner. The care pathway has helped to formalise dental treatment for children with IBD and to improve every health care professional’s understanding of their role in this care.

Parole chiave

  • dental
  • haemophilia
  • inherited bleeding disorders
  • care pathway
  • paediatric
  • children
Accesso libero

Decision-support tool for telephone triage — the Canadian experience

Pubblicato online: 21 Apr 2018
Pagine: 29 - 40

Astratto

Abstract

The concentration of expertise in haemophilia treatment centres means that patients in most countries live a considerable distance from their treatment centre. Telephone support between regular clinic visits is common practice. This article describes the six principles that broadly outline nurses’ accountabilities when providing care over the telephone and discusses how they have been applied in practice with the Canadian Association of Nurses in Hemophilia Care (CANHC) telephone guidelines.

Parole chiave

  • haemophilia
  • telephone
  • triage
  • guidelines

Practical Challenges In Management

Clinical Practice

Accesso libero

Joint assessment in haemophilia – current physiotherapist practice in the UK

Pubblicato online: 21 Apr 2018
Pagine: 9 - 13

Astratto

Abstract

Aim: UK guidelines recommend regular assessment of joint status in children with haemophilia using a standardised tool performed by haemophilia physiotherapists. We surveyed UK physiotherapists working in haemophilia care regarding their current practice with respect to joint scoring. Methods: A survey was posted on SurveyMonkey and all haemophilia physiotherapists practising in the UK were invited to respond. Responses were analysed and discussed at a roundtable meeting attended by invited physiotherapists and specialist haemophilia nurses. Results: In all, responses were received from 29 of the estimated 37 physiotherapists in the UK who see haemophilia patients. Both the survey and subsequent discussion reflected agreement that joint scoring offers a valuable tool to clinicians, but that better ways of assessing joint health were needed. There was enthusiasm for combining joint scoring with systematic and validated patient-reported outcome measures. Conclusion: Greater understanding is needed of the relationship between joint scores and measures of physical function and quality of life.

Parole chiave

  • haemophilia
  • physiotherapy
  • quality of life
  • physical function
  • outcome measures

Clinical Research

Accesso libero

HaemophiliaLIVE: an ethnographic study on the impact of haemophilia on daily life

Pubblicato online: 21 Apr 2018
Pagine: 14 - 20

Astratto

Abstract

Introduction: Haemophilia causes joint, muscle and soft tissue bleeds, often leading to pain and disability. These effects can have a significant impact on patients’ well-being and quality of life. There is a need to better understand patient priorities and concerns so that haemophilia healthcare professionals can develop strategies to meet these needs with individuals and their families. Methods: The HaemophiliaLIVE ethnographic study enrolled 16 families from four comprehensive care centres in the UK. Each family received a kit consisting of video recording equipment, seven sealed envelopes each containing a “secret question” and pre-paid envelopes for secure return of the video memory cards. Video footage was recorded daily to examine the impact of haemophilia. Results: Over 30 hours of recorded footage was obtained from 10 families with children/young adults, two young adults, and three older men. Six participants had a current inhibitor. The key themes identified were impact on: family relationships, school, employment and travel. The older participants and those with inhibitors reported that pain was a major factor in their day-to-day lives, and also expressed fear about loss of mobility and pending surgery. Although parents expressed anger and sadness about their child’s haemophilia, those with haemophilia were generally positive about their life experiences. Many reported that their employers were understanding and made additional provision for their haemophilia. Conclusions: Haemophilia has a significant impact on patients and their families. This research provides insight on the support needs of individuals and families.

Parole chiave

  • haemophilia
  • patient perspective
  • quality of life
  • support
  • ethnographic research

Case Study

Accesso libero

FEIBA prophylaxis in a patient with haemophilia and inhibitors

Pubblicato online: 21 Apr 2018
Pagine: 21 - 23

Astratto

Abstract

A case study is presented illustrating the everyday challenges faced by patients with haemophilia and inhibitors and how treatment with bypassing agents or just FEIBA prophylaxis can help to control bleeding and improve functional ability.

Parole chiave

  • FEIBA
  • haemophilia
  • inhibitors

Nursing Focus

Accesso libero

2015 Conference And Agm

Pubblicato online: 21 Apr 2018
Pagine: 23 - 23

Astratto

Accesso libero

Nurses can meet the challenge of haemophilia care in South Africa

Pubblicato online: 21 Apr 2018
Pagine: 24 - 26

Astratto

Abstract

Haemophilia care in South Africa faces a number of challenges and nurses can play a significant role in addressing these and raising standards of practice. This report considers those challenges and steps taken by the country as it has attempted to meet them. It also summarises the key themes that arose from a nursing workshop held November 2013 as part of a MASAC symposium and facilitated by the authors.

Parole chiave

  • haemophilia
  • nursing
  • South Africa
Accesso libero

WFH in Melbourne: the long march of the haemophilia nurse continues

Pubblicato online: 21 Apr 2018
Pagine: 27 - 28

Astratto

Abstract

The World Federation of Hemophilia’s world congress in Melbourne offered haemophilia nurses from across the world an opportunity to meet and share knowledge and experience in a friendly and supportive setting.

Parole chiave

  • haemophilia
  • WFH
  • nurse

Community Profile

Accesso libero

How aid can help the haemophilia community learn to develop Karin Lindvall - an appreciation Karin Lindvall - an appreciation

Pubblicato online: 21 Apr 2018
Pagine: 41 - 44

Astratto

Abstract

Save One Life and Project SHARE were founded on the belief that offering aid to those with bleeding disorders in developing countries must be accompanied by support for growth and development. Managing editor Mike Holland caught up with the prime movers behind the two operations

Obituary

Accesso libero

Karin Lindvall - an appreciation

Pubblicato online: 21 Apr 2018
Pagine: 45 - 45

Astratto

13 Articoli

Editorial

Accesso libero

We must tackle inequalities in care

Pubblicato online: 21 Apr 2018
Pagine: 1 - 1

Astratto

Accesso libero

A care pathway to cut your teeth on

Pubblicato online: 21 Apr 2018
Pagine: 2 - 2

Astratto

Policy and Practice

Accesso libero

A dental care pathway for children with inherited bleeding disorders

Pubblicato online: 21 Apr 2018
Pagine: 3 - 6

Astratto

Abstract

Royal London Hospital is a major referral centre for children with inherited bleeding disorders (IBD). Dental caries and periodontal disease can be prevented, which is especially important in these children to avoid invasive treatment. For this reason a care pathway has been established, focusing on appropriate prevention advice and treatment A Paediatric Dental Specialist attends the monthly Paediatric Haematology clinics. Children are screened for untreated dental decay and preventive dental advice is given verbally along with a patient information leaflet. At the clinic, a letter is sent out to the patient’s general dental practitioner (GDP). Nonregistered patients are directed to NHS Choices website to find a local NHS GDP. Liaison of GDPs with both haematology and hospital paediatric dental services is actively encouraged to support the provision of dental care within the primary care setting, particularly routine preventive care. Depending on the severity of the bleeding diathesis and the degree of invasive dental treatment required, the GDP may undertake simple treatment or, in more complex cases, may arrange a referral to the Royal London Dental Hospital. A consultation process takes place between paediatric dentist, paediatric haematologist and specialist nurse to determine the most appropriate haematological cover for each patient. This will depend on the severity of the bleeding disorder, the complexity of dental treatment and the need for local anaesthesia. The date of the dental visits and the haemostatic cover are requested via the electronic patient record so that it is accessible to all clinicians involved in their care without the need to retrieve their paper notes. This pathway encourages active involvement of the patients’ GDP and allows the patient to be treated as safely as possible in a timely manner. The care pathway has helped to formalise dental treatment for children with IBD and to improve every health care professional’s understanding of their role in this care.

Parole chiave

  • dental
  • haemophilia
  • inherited bleeding disorders
  • care pathway
  • paediatric
  • children
Accesso libero

Decision-support tool for telephone triage — the Canadian experience

Pubblicato online: 21 Apr 2018
Pagine: 29 - 40

Astratto

Abstract

The concentration of expertise in haemophilia treatment centres means that patients in most countries live a considerable distance from their treatment centre. Telephone support between regular clinic visits is common practice. This article describes the six principles that broadly outline nurses’ accountabilities when providing care over the telephone and discusses how they have been applied in practice with the Canadian Association of Nurses in Hemophilia Care (CANHC) telephone guidelines.

Parole chiave

  • haemophilia
  • telephone
  • triage
  • guidelines

Practical Challenges In Management

Clinical Practice

Accesso libero

Joint assessment in haemophilia – current physiotherapist practice in the UK

Pubblicato online: 21 Apr 2018
Pagine: 9 - 13

Astratto

Abstract

Aim: UK guidelines recommend regular assessment of joint status in children with haemophilia using a standardised tool performed by haemophilia physiotherapists. We surveyed UK physiotherapists working in haemophilia care regarding their current practice with respect to joint scoring. Methods: A survey was posted on SurveyMonkey and all haemophilia physiotherapists practising in the UK were invited to respond. Responses were analysed and discussed at a roundtable meeting attended by invited physiotherapists and specialist haemophilia nurses. Results: In all, responses were received from 29 of the estimated 37 physiotherapists in the UK who see haemophilia patients. Both the survey and subsequent discussion reflected agreement that joint scoring offers a valuable tool to clinicians, but that better ways of assessing joint health were needed. There was enthusiasm for combining joint scoring with systematic and validated patient-reported outcome measures. Conclusion: Greater understanding is needed of the relationship between joint scores and measures of physical function and quality of life.

Parole chiave

  • haemophilia
  • physiotherapy
  • quality of life
  • physical function
  • outcome measures

Clinical Research

Accesso libero

HaemophiliaLIVE: an ethnographic study on the impact of haemophilia on daily life

Pubblicato online: 21 Apr 2018
Pagine: 14 - 20

Astratto

Abstract

Introduction: Haemophilia causes joint, muscle and soft tissue bleeds, often leading to pain and disability. These effects can have a significant impact on patients’ well-being and quality of life. There is a need to better understand patient priorities and concerns so that haemophilia healthcare professionals can develop strategies to meet these needs with individuals and their families. Methods: The HaemophiliaLIVE ethnographic study enrolled 16 families from four comprehensive care centres in the UK. Each family received a kit consisting of video recording equipment, seven sealed envelopes each containing a “secret question” and pre-paid envelopes for secure return of the video memory cards. Video footage was recorded daily to examine the impact of haemophilia. Results: Over 30 hours of recorded footage was obtained from 10 families with children/young adults, two young adults, and three older men. Six participants had a current inhibitor. The key themes identified were impact on: family relationships, school, employment and travel. The older participants and those with inhibitors reported that pain was a major factor in their day-to-day lives, and also expressed fear about loss of mobility and pending surgery. Although parents expressed anger and sadness about their child’s haemophilia, those with haemophilia were generally positive about their life experiences. Many reported that their employers were understanding and made additional provision for their haemophilia. Conclusions: Haemophilia has a significant impact on patients and their families. This research provides insight on the support needs of individuals and families.

Parole chiave

  • haemophilia
  • patient perspective
  • quality of life
  • support
  • ethnographic research

Case Study

Accesso libero

FEIBA prophylaxis in a patient with haemophilia and inhibitors

Pubblicato online: 21 Apr 2018
Pagine: 21 - 23

Astratto

Abstract

A case study is presented illustrating the everyday challenges faced by patients with haemophilia and inhibitors and how treatment with bypassing agents or just FEIBA prophylaxis can help to control bleeding and improve functional ability.

Parole chiave

  • FEIBA
  • haemophilia
  • inhibitors

Nursing Focus

Accesso libero

2015 Conference And Agm

Pubblicato online: 21 Apr 2018
Pagine: 23 - 23

Astratto

Accesso libero

Nurses can meet the challenge of haemophilia care in South Africa

Pubblicato online: 21 Apr 2018
Pagine: 24 - 26

Astratto

Abstract

Haemophilia care in South Africa faces a number of challenges and nurses can play a significant role in addressing these and raising standards of practice. This report considers those challenges and steps taken by the country as it has attempted to meet them. It also summarises the key themes that arose from a nursing workshop held November 2013 as part of a MASAC symposium and facilitated by the authors.

Parole chiave

  • haemophilia
  • nursing
  • South Africa
Accesso libero

WFH in Melbourne: the long march of the haemophilia nurse continues

Pubblicato online: 21 Apr 2018
Pagine: 27 - 28

Astratto

Abstract

The World Federation of Hemophilia’s world congress in Melbourne offered haemophilia nurses from across the world an opportunity to meet and share knowledge and experience in a friendly and supportive setting.

Parole chiave

  • haemophilia
  • WFH
  • nurse

Community Profile

Accesso libero

How aid can help the haemophilia community learn to develop Karin Lindvall - an appreciation Karin Lindvall - an appreciation

Pubblicato online: 21 Apr 2018
Pagine: 41 - 44

Astratto

Abstract

Save One Life and Project SHARE were founded on the belief that offering aid to those with bleeding disorders in developing countries must be accompanied by support for growth and development. Managing editor Mike Holland caught up with the prime movers behind the two operations

Obituary

Accesso libero

Karin Lindvall - an appreciation

Pubblicato online: 21 Apr 2018
Pagine: 45 - 45

Astratto

Pianifica la tua conferenza remota con Sciendo