<abstract xml:lang="e" xmlns="http://www.w3.org/1999/xhtml"><p> 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.</p></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.

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

The Journal of Haemophilia Practice

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

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....

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

Article Category: Clinical Research

Publié en ligne: 21 avr. 2018

Pages: 10 - 16

DOI: https://doi.org/10.17225/jhp.00005

Mots clés
social support, haemophilia, boys, young people

© 2018

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

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

Article Category: Clinical Research

Publié en ligne: 21 avr. 2018

Pages: 10 - 16

DOI: https://doi.org/10.17225/jhp.00005

Mots cléssocial support, haemophilia, boys, young people

© 2018

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

Mots clés
social support, haemophilia, boys, young people