Daily life after Subarachnoid Haemorrhage : Identity construction, patients’ and relatives’ statements about patients’ memory, emotional status and activities of living

Sammanfattning: The overall aim of this thesis was to describe patients’ experience and reconstruction regarding the onset of, and events surrounding being struck by a Subarachnoid Haemorrhage (SAH), and to describe patients’ and relatives’ views of patients’ memory ability, emotional status and activities of living, in a long-term perspective.Methods: Both inductive and deductive approaches were used. Nine open interviews were carried out in home settings, in average 1 year and 7 seven months after the patients’ onset, and discourse analysis was used to interpret the data. Eleven relatives and 11 patients, 11 years after the onset, and 15 relatives and 15 patients, 6 years after the onset, participated in two studies. Interviews using a questionnaire with structured questions and memory tests were used to collect data. Fischer’s exact test and Z-scores were used for the statistical analysis.Results: Patients with experience of a SAH were able to judge their own memory for what happened when they became ill. The reconstruction of the illness event may be interpreted as an identity creating process. The process of meaning-making is both a matter of understanding SAH as a pathological event and a social and communicative matter, where the SAH is construed into a meaningful life history, in order to make life complete (I). Memory problems, changes in emotional status and problems with activities of living were common (II-IV). There was correspondence between relatives’ and patients’ statements regarding the patients’ memory in general and long-term memory. Patients judged their own memory ability better than relatives, compared with results on memory tests. Relatives stated that some patients had meta-memory problems (II). The episodic memory seemed to be well  reserved, both concerning the onset and in the long-term perspective (I, II). There were more problems with social life than with P- and I-ADL (III), and social company habits had changed due to concentration difficulties, mental fatigue, and  patients’ sensitivity to noisy environments and uncertainty (IV). Relatives rated the patients’ ability concerning activities of living and emotional status, and in a similar manner to patients’ statements (III-IV).Conclusions: The reconstruction of the illness event can be used as a tool in nursing for understanding the patient’s identity-construction. Relatives and patients stated the patients’ memory, emotional status and activities of living in a similar manner, and therefore both patients’ and relatives’ statements can be used as a tool in nursing care, in order to support the patient. However, the results showed: meta-memory problems (relatives’ statements) and that the patients’ judged their own memory ability better than relatives in comparison with results on memory tests. Nevertheless, there was a high degree of concordance between relatives’ and patients’ evaluations concerning patients´ memory ability, emotional status, emotional problems, social company habits and activities of living. Therefore both relatives’ and patients’ statements can be considered to be reliable. However, sometimes the patients and the relatives judge the patients’ memory differently. Consequently, memory tests and formalized dialogues between the patient, the relative and a professional might be required, in order to improve the mutual family relationship in a positive way. Professionals however, must first assume that patients can judge their own memory, emotional status and ability in daily life.