Högskolan i Skövde

Background: A Subarachnoid haemorrhage (SAH) is a complex pathophysiological event and most patients have, before the onset, felt completely well. Being stricken by a SAH is a dramatic event, often followed by unconsciousness and memory problems. This may influence the adjustment to daily life. Supporting patients and relatives in nursing care therefore requires knowledge concerning patients' experience of the onset of the SAH event, and knowledge concerning patients' memory after a SAH.

Aim: The general aim of this thesis was to study patients' experiences and reconstruction of the onset of, and events surrounding, a SAH and to study patients' and relatives' experience of patients' memory ability, in a long-term perspective.

Specific aims:

(I) The aim of this study was to analyse people's accounts of SAH, and to describe how they initiate and create meaning for the onset and events surrounding the SAH. The specific questions were : (i) What is highlighted in the accounts of SAH? (II) How is the illness reconstructed? (iii) How is meaning created through communicative interaction with others about SAH?

(II) The aim was to describe memory after a SAH from the perspective of relatives and patients in two cohorts. In this study, the researchers also aimed to evaluate the application of relatives' statements as a tool in nursing care and rehabilitation, in order to support the patients. This was achieved by comparing: (i) Relatives' statements with patients' statements and (ii) Relatives' and patients' statements with the patients' memory test results.

Methods: Both an inductive and a deductive approach were used. Nine open interviews were carried out in home settings, 1 year and 7 months (ranging 14-24 months) after the patients' onset and discourse analysis was used to interpret the data (I). Eleven relatives and 11 patients, 11 years and 15 relatives and 15 patients, 6 years after the onset participated in two studies. Interview questions and memory tests were used to collect data. Fischer's exact test was used for the statistical analysis (II).

Findings:Patient with experience of a SAH were able to judge their own memory for what happened when they became ill. Both conscious irrational and rational actions were expressed in relation to experienced sensations. Critical events related to SAH were "existential insights" and "time as waiting and time as structuring meaning". The reconstruction of the illness event may be interpreted as an identity ceating 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 constructed into a meaningful life history, in order to make life complete (I). Memory problems were common according to relatives' and patients' statements and from memory test results. 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. Both relatives and patients underestimated older patients' memory ability and underrated younger patients' memory problems, when compared with results on memory tests. Relatives stated that some patients had meta-memory problems (II). The episodic memory seemed to be well preserved, both concerning the onset (I) and in the long-term perspective (II).

Conclusions: The reconstruction of the illness is a tool in nursing for understanding the patient's self-positioning and identity-construction. (I) Relatives' and patients' statements regarding patients' memory can also be used as tools in nursing care. However, the results showed: meta-memory problems (relatives' statements); that patients' judged their own memory ability better than relatives in comparison with results on memory tests. Consequently, memory tests and formalized dialogues, between the patient, the relative and a professional are required in order to prevent complications in the patient's mutual family relationships. However, professionals must assume that patients can judge their own memory (II). Dialogues between the patient, the relative and a professional, with focus on how to manage daily life in patients' home context, due to the patient's experience of the onset of the SAH and possible memory problems after the SAH, will probably improve the mutual family relationship in a positive way (I,II).

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.