Patient concerns posthaemorrhagic stroke: a study of the Internet narratives of patients with ruptured arteriovenous malformation.

AIMS: To identify and describe the experiences and concerns of a sample of young haemorrhagic stroke patients who experienced a ruptured arteriovenous malformation and determine whether there are gender differences.

BACKGROUND: Patients with arteriovenous malformation haemorrhage tend to be young adults, but little is known about their experiences and concerns. Some research suggest that there is a need to take gender into account when investigating their experiences and concerns.

DESIGN: A content analysis of a sample of narratives posted by survivors of an arteriovenous malformation haemorrhage on an Internet site, to determine the extent to which writers discuss similar concerns and experiences.

METHODS: The sample consists of 83 narratives. The author and a research assistant carefully considered the content of each narrative, created categories based upon this reading and then coded men and women's narratives separately, according to the topic discussed.

RESULTS: Five main categories of topics were identified: 'symptoms', 'doctors and hospitals', 'rehabilitation and recovery', 'disabilities' and 'miscellaneous reflections'. The latter category contained the sub-categories 'arteriovenous malformation website', 'thanks', 'life now' and 'feelings'. Narratives varied greatly regarding how much each topic was addressed, but there were few gender differences. Overall, most attention was paid to discussing doctors and hospitals and most writers also paid significant attention to the importance of being able to share experiences with other survivors.

CONCLUSIONS: For these narrators, the experience of being evaluated and treated for arteriovenous malformation haemorrhage is traumatic, leaves a lasting impact and men and women share similar concerns and experiences. Narrators show a need to talk about their experiences, especially with others who may share similar experiences.

RELEVANCE TO CLINICAL PRACTICE: Knowing the concerns and perspectives of a sample of arteriovenous malformation patients may help nurses anticipate the concerns of their own haemorrhagic stroke patients and help improve patients' psychosocial well-being.