Aims and objectives: To describe and compare the extent and application of patients' diaries in Sweden.

Background: Since 1991, patient diaries have been used in intensive care unit (ICU) follow-up in Sweden. There is paucity of relevant data evaluating the effect of this tool and also on what premises patients are enrolled. Likewise, data are sparse on the diaries' design, content structure and the use of photographs.

Design: Descriptive explorative design by a semi-structured telephone interview.

Methods: The interview results were analysed with descriptive statistics and differences between the ICU levels were explored by χ² analysis. Qualitative manifest content analysis was performed to explore the purpose of diary writing.

Results: Of all ICUs (n = 85), 99% responded and 75% used diaries. The source of inspiration was collegial rather than from scientific data. The main reason for keeping a diary was to help the patient to recapitulate the ICU stay. Discrepancies between the different levels of ICUs were detected in patient selection, dedicated staff for follow-up and the use of photographs. Comparison between the χ² analysis and the content analysis outcome displayed incongruence between the set unit-goals and the activities for achievement but did not explain the procedural differences detected.

Conclusion: The uses of diaries in post ICU follow up were found to be common in Sweden. A majority used defined goals and content structure. However, there were differences in practice and patient recruitment among the levels of ICUs. These discrepancies seemed not to be based on evidence-based data nor on ongoing research or evaluation but merely on professional judgement. As ICU follow-up is resource intense and time consuming, it is paramount that solid criteria for patient selection and guidelines for the structure and use of diaries in post-ICU follow-up are defined.

Many ICU-patients have memory-gaps which may affect their recovery. A tool in the recovery can be an ICU-diary to explain and clarify thoughts and events from the ICU-period. There are different standards for the content in the ICU-diary. The aim of this study was to identify the preferred content and usefulness of an ICU-diary as described by ICU-patients.

Method: a descriptive, exploratory cohort design with a mixed method approach. The patients answered a questionnaire (n=115) and participated in an interview (n=15) six months after the ICU-stay. Data analysis was carried out in three stages; the questionnaire was analysed by descriptive statistics and categorized by content (four open-ended questions) and the interviews were analysed by manifest content analysis.

Results: The patients explained that detailed information about daily activities and medical facts had to be included to understand and give a sense of coherence of what had happened. The content in the ICU-diary had to be chronological in order to follow the process in which photos were an important part. The patients re-read the ICU-diary during the recovery which helped them to fill in the memory gaps and used it as a tool for communication.

Conclusion; To construct a coherent story, it was essential that the ICU-diary was complete and were amplified by photos, all appearing in a chronological order. The results of this study could form a basis for further developments of standards and guidelines for ICU-diaries

Background: Current studies reveal a lack of consensus for the evaluation of physical and psychosocial problems after ICU stay and their changes over time.

Objectives: The aim was to develop and evaluate the validity and reliability of a questionnaire for assessing physical and psychosocial problems over time for patients following ICU recovery.

Patients: Thirty-nine patients completed the questionnaire, 17 were retested.

Methods and results: The questionnaire was constructed in three sets: physical problems, psychosocial problems and follow-up care. Face and content validity were tested by nurses, researchers and patients. The questionnaire showed good construct validity in all three sets and had strong factor loadings (explained variance >70%, factor loadings >0.5) for all three sets. There was good concurrent validity compared with the SF 12 (r_s > 0.5). Internal consistency was shown to be reliable (Cronbach's α 0.70–0.85). Stability reliability on retesting was good for the physical and psychosocial sets (r_s > 0.5).

Conclusion: The 3-set 4P questionnaire was a first step in developing an instrument for assessment of former ICU patients’ problems over time. The sample size was small and thus, further studies are needed to confirm these findings.

This is a further development of a specific questionnaire, the 3-set 4P, to be used for measuring former ICU patients’ physical and psychosocial problems after ICU and the need for follow-up. The aim was to psychometrically test and evaluate the 3-set 4P questionnaire in a larger population. The questionnaire consists of three sets: “physical”, “psychosocial” and “follow-up”. The questionnaires were sent by mail to all patients with >24 hour length of stay at four ICUs in Sweden. Construct validity was measured with exploratory factor analysis with varimax rotation resulting in “physical set” three factors, “psychosocial set” five factors and “follow-up set” four factors with strong factor loadings and a total explained variance of 62 - 77.5%. Thirteen questions in the SF-36 were used for concurrent validity showing Spearman’s r_s 0.3-0.6 in eight and <0.2 in five questions. Test-retest was used for stability reliability. In set follow-up the correlation was strong to moderate and in physical and psychosocial sets the correlations were moderate to fair. This could be due to that the physical and psychosocial status changed rapidly during the test period. All three sets had good homogeneity. In conclusion, the 3-set 4P showed overall acceptable results, but it has to be further modified in different cultures before being an instrument which may be fully operational in clinical practice.