Khair Kate, Collier Charles, Meerabeau Liz, Gibson Faith
Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
Nurse Res. 2013 Jul;20(6):40-4. doi: 10.7748/nr2013.07.20.6.40.e318.
To describe the use of an innovative, multimethodological approach to exploring the day-to-day experiences of boys across a wide age range to better understand the effects of modern haemophilia treatment on their lives.
Children and young people with severe haemophilia can now be treated with prophylaxis and potentially have a lifestyle close to that of those without haemophilia. However, boys frequently describe living with haemophilia as burdensome.
The study, based on a grounded theory approach, was conducted with boys aged four to 16 years old, using research methods that included photo-elicitation, 'draw and write' techniques, focus groups run by participant co-researchers and individual interviews.
Grounded theory was used to enable rich data capture, through reshaping of research questions as theory developed.
The effectiveness of the methods used is discussed, along with consideration of the issues raised.
These methods are effective for use with children. They can result in robust data and are also fun for child participants.
IMPLICATIONS FOR RESEARCH/PRACTICE: Understanding life with chronic disease from a child's perspective can improve clinical care through a better understanding of health behaviour and lifestyle implications.
描述一种创新的多方法途径,用于探究不同年龄段男孩的日常经历,以更好地理解现代血友病治疗对他们生活的影响。
患有严重血友病的儿童和青少年现在可以接受预防性治疗,并且有可能拥有与非血友病患者相近的生活方式。然而,男孩们经常将患血友病的生活描述为沉重负担。
该研究基于扎根理论方法,对4至16岁的男孩进行,采用的研究方法包括照片诱导、“绘画与写作”技巧、由参与共同研究的人员主持的焦点小组以及个人访谈。
运用扎根理论,随着理论的发展通过重新塑造研究问题来实现丰富的数据收集。
讨论了所用方法的有效性以及对所提出问题的思考。
这些方法对儿童有效。它们能产生可靠的数据,对儿童参与者来说也很有趣。
对研究/实践的启示:从儿童角度理解慢性病生活可以通过更好地理解健康行为和生活方式影响来改善临床护理。