<abstract xmlns="http://www.w3.org/1999/xhtml"><p>Haemophilia impacts on the person who has it as well as his close family and friends. The majority of healthcare provider focus is with the person with haemophilia and his carers during childhood, and then on the person himself as he becomes able to self-manage. There is a belief that the family and healthcare team support the patient equally. In this study, which was designed to understand the patient/ carer/healthcare provider relationship, we investigated support mechanisms from the patient’s perspective, using narrative stories from those we call ‘witnesses’. Carers, family and friends rarely feature in haemophilia research, yet can provide in-depth insight into the life of the person with haemophilia. Three key areas were identified which underlie and cause tension in the world of haemophilia. These are described as ‘identity and tackling the lion’, ‘the haemophilia team’ and ‘the unique perspective and influence of the ‘outside-in’. Support from the ‘outside-in’ as well as healthcare providers is important for people with haemophilia for both physical and psychological health. Working together we can better support individuals with haemophilia as well as other members of their extended families. As haemophilia care changes in a new era of therapeutic options; we need to re-evaluate the supportive role of family and carers to ensure that the patient and family voice is heard in decision-making at an individual and national level.</p></abstract>

Haemophilia impacts on the person who has it as well as his close family and friends. The majority of healthcare provider focus is with the person with haemophilia and his carers during childhood, and then on the person himself as he becomes able to self-manage. There is a belief that the family and healthcare team support the patient equally. In this study, which was designed to understand the patient/ carer/healthcare provider relationship, we investigated support mechanisms from the patient’s perspective, using narrative stories from those we call ‘witnesses’. Carers, family and friends rarely feature in haemophilia research, yet can provide in-depth insight into the life of the person with haemophilia. Three key areas were identified which underlie and cause tension in the world of haemophilia. These are described as ‘identity and tackling the lion’, ‘the haemophilia team’ and ‘the unique perspective and influence of the ‘outside-in’. Support from the ‘outside-in’ as well as healthcare providers is important for people with haemophilia for both physical and psychological health. Working together we can better support individuals with haemophilia as well as other members of their extended families. As haemophilia care changes in a new era of therapeutic options; we need to re-evaluate the supportive role of family and carers to ensure that the patient and family voice is heard in decision-making at an individual and national level.

You think you know the patient inside-out. But do you know the <italic>outside-in</italic>?

The Journal of Haemophilia Practice

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

You think you know the patient inside-out. But do you know the ?

Haemophilia impacts on the person who has it as well as his close family and friends. The majority of healthcare provider focus is with the person with...

You think you know the patient inside-out. But do you know the outside-in?

Article Category: Clinical Practice

Published Online: Dec 14, 2018

Page range: 130 - 137

DOI: https://doi.org/10.17225/jhp00125

Keywords
haemophilia, inside-out, outside in, patient experience, self-management

© 2018 Emily South, Kate Khair, published by Sciendo

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

You think you know the patient inside-out. But do you know the outside-in?

Article Category: Clinical Practice

Published Online: Dec 14, 2018

Page range: 130 - 137

DOI: https://doi.org/10.17225/jhp00125

Keywordshaemophilia, inside-out, outside in, patient experience, self-management

© 2018 Emily South, Kate Khair, published by Sciendo

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Keywords
haemophilia, inside-out, outside in, patient experience, self-management