Masoume Rambod, Farkhondeh Sharif, Zahra Molazem and Kate Khair
of practice: meaning-giving methods in phenomenological research and writing. 2014. Walnut Creek, California: Left Coast Press. 15. Lincoln Y, Guba E. Naturalistic inquiry. 1985. Beverly Hills: Ca: Sage. 16. Kodra Y, Cavazza M, Schieppati A, et al. The social burden and quality of life of patients with haemophilia in Italy. Blood Transfusion= Trasfusione del Sangue 2014; 12 Suppl 3: s567-75. 17. Forsyth AL, Gregory M, Nugent D, et al. Haemophilia Experiences, Results and Opportunities (HERO) Study: survey methodology
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.
Greta Mulders and Nanda Uitslager
The Verpleegkundigen & Verzorgenden Nederland Verpleegkundig Specialisten (V&VN VS), the Dutch professional organisation representing nurse practitioners, has introduced a requirement for advanced practice (registered) nurses (APRN) who wish to be eligible for reregistration within five years to participate in a peer review group for at least eight hours per year. In 2013, five APRNs caring for people with haemophilia and other bleeding disorders in the Netherlands formed a peer review group. As no framework was available, research was undertaken through reviewing literature and engaging in exploratory discussions within the profession in order to identify best practice in establishing such a group. The initial meeting of the new peer review group agreed possible methodologies and established meeting rules. After four meetings, some initial conclusions can now be drawn on the benefits of this specialised haemophilia peer review group. Overall, it is clear that participation in a forum in which knowledge and expertise are shared, contributes to the professionalism of the APRN.
Masoume Rambod, Farkondeh Sharif, Zahra Molazem and Kate Khair
Background: Pain management can prevent long-term burdens in haemophilia patients and improve their quality of life. The present study aimed to describe and interpret pain experiences in haemophilia patients, focusing on pain self-management in their lives. Methods: This was a qualitative study undertaken using a hermeneutic phenomenological approach. The study involved 14 haemophilia patients referred to a haemophilia clinic affiliated to Shiraz University of Medical Sciences in Iran. Data were collected using semi-structured interviews and field notes. Thematic analysis with van Manen’s methodological framework was applied. Data analysis was performed using MAX. QDA qualitative software (2010). Results: Four themes emerged: a sense of self-awareness and recognition of pain and the factors that affect it, the ability to control and self-manage pain, gradually achieving self-efficacy in pain control, and using cognitive and spiritual strategies for pain relief. Conclusions: The study highlighted the essence of the lived experience of pain self-management and generated its linguistic description. By providing complementary therapy interventions, healthcare providers and family members could increase patients’ self-awareness, recognition, ability to self-manage and control pain effectively, and competence in developing cognitive and spiritual strategies for pain relief.
Kate Khair, Anica Phillott, Christine Loran, Debra Pollard, Claire Forrester, Sharon Alavian and Susan Hook
haemophilia: a systematic review of methodologies and findings. Haemophilia 2012; 18: e101T114. 8. Norton BTA, Thomas R, Lomax G, DudleyTBrown S. Patient perspectives on the impact of Crohns disease: results from group interviews. Patient Preference and Adherence 2012; 6: 509T20. 9. Bottos AM, Zanon E, Sartorri MT, Girolami A. Psychosocial aspects and coping styles of parents with haemophiliac child undergoing a programme of counseling and psychological support. Haemophilia 2007; 13: 305T10. 10. Wiesesbusch S, Pollmann H
Kate Khair and Steve Chaplin
caregivers of having a child with haemophilia complicated by inhibitors. Pediatr Blood Cancer 2014;61(4):706-11. 14. Bullinger M, Von Mackensen S; Haemo-QoL Group. Quality of life in children and families with bleeding disorders. J Pediatr Hematol Oncol 2003;25 Suppl 1:S64-7. 15. Forsyth AL, Gregory M, Nugent D, et al. Haemophilia Experiences, Results and Opportunities (HERO) Study: survey methodology and population demographics. Haemophilia 2014;20:44-51. 16. Wiedebusch S, Pollmann H, Siegmund B, et al. Quality of life
. Psychosocial aspects of haemophilia: a systematic review of methodologies and findings. Haemophilia 2012; 18: e101Xe114. 29. Jutel AG. Putting a Name to It: Diagnosis in Contemporary Society. Baltimore; Johns Hopkins University Press, 2011. 30. Haemophilia Society. Women Bleed too UK Haemophilia Society YNo DateZ For carriers of haemophilia with bleeding symptoms. 31. NHF. Victory for Women with Blood Disorders. National Hemophilia Foundation, 2006. Available at: http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=339
Kate Khair, Faith Gibson and Liz Meerabeau
through qualitative analysis. Sage Press 2006. 22 Clark C. The autodriven interview. A photographic viewfinder into children’s experience. Visual Sociol 1999; 14: 39S50. 23 Horstman M, Aldiss S, Richardson A, et al. Methodological issues when using the draw and write technique with children aged 6S12 years. Qual Health Res. 2008; 18T7U: 1001S11. 24 Gibson F. Conducting focus groups with children and young people: strategies for success. J Nursing Res. 2007; 12: 473S83. 25 Graneheim UH, Lundman B
Stephanie Taylor, Francine Toye and Karen Barker
. 26. Gomis M, Querol F, Gallach J, González L, Aznar J. Exercise and sport in the treatment of haemophilic patients: a systematic review. Haemophilia 2009; 15: 43-54. 27. Cassis FY, Querol F, Forsyth A, Iorio A. Psychosocial aspects of haemophilia: a systematic review of methodologies and findings. Haemophilia 2012; 18: e101-e14. 28. Beeton K, Neal D, Lee C. An exploration of health-related quality of life in adults with haemophilia - a qualitative perspective. Haemophilia 2005; 11: 123-32. 29. Barlow J, Stapley J