The experience of relatives using intensive care diaries: A systematic review and qualitative synthesis.

BACKGROUND: Intensive care patient diaries written by staff and/or relatives are widely used in intensive care units (ICUs) across the world. Although the original aim of the diaries was to support patients in their recovery from ICU, a more recent focus of the literature has been the potential benefit of the diaries to the relatives of patients. Meta-analyzes of quantitative studies looking at the impact on the psychological wellbeing of relatives have not consistently found an effect of the diaries, even though qualitative studies suggest that relatives find the diaries to be a useful coping strategy. OBJECTIVES: To evaluate and synthesise qualitative studies looking at the experience of relatives writing in ICU diaries. DESIGN: A systematic review and qualitative synthesis. DATA SOURCES: A structured search using CINAHL, MEDLINE, PsycInfo, Cochrane Central Register of Controlled Trials (CENTRAL), PTSDHubs and Published International Literature Web of Science Conference Proceedings Citation Index - Science and Social Science and Humanities was conducted. REVIEW METHODS: All studies published at any time that included qualitative data (including mixed methods studies) about the perceptions of relatives using ICU patient diaries were included. Themes and narrative statements were extracted from included articles and synthesised. Articles were quality assessed using the Critical Appraisal Skills Programme (CASP) qualitative checklist and Mixed Methods Appraisal Tool (MMAT). RESULTS: Sixteen studies were included in the review, thirteen qualitative and three mixed methods articles. The themes identified were: 1. Coping (subthemes: 1.1. Emotion-Focused Coping and 1.2. Problem-Focused Coping) 2. Connection (subthemes: 2.1 Method of Communication and 2.2 Developing and maintaining relationships) 3. Developing a Narrative (subthemes 3.1 Understanding 3.2 Shaping the story 3.3 Remembering). CONCLUSIONS: Relatives use the diaries in a variety of ways including as a means of coping, a way of staying connected, as a tool to understand and develop a narrative about the experience. These findings link the use of ICU diaries with literature on written emotional exposure, post-traumatic growth and meaning making. The relationship between a relative's use of the ICU diary, coping strategies and/or post-traumatic growth could be a focus for future quantitative trials. PROSPERO protocol number CRD42020165869.

The clinical value of quality of life assessment in oncology practice-a qualitative study of patient and physician views.

BACKGROUND: Patients' self-reported questionnaires measuring symptoms, functioning and quality of life (QOL) can help physicians to screen and monitor patient problems in oncology practice. Although many self-reported questionnaires have been developed, their role in clinical practice remains unclear. This study explores what oncologists and patients need from QOL questionnaires, what their clinical value is and generates recommendations how to improve the questionnaires for use in oncology practice. METHODS: Focus groups were conducted in the Leeds Cancer Centre (St James's and Cookridge hospitals, UK), with 31 patients (9 groups) and 16 oncologists (4 groups). Twenty patients completed a questionnaire. Framework analysis was employed for the analysis. RESULTS: Patients and physicians wanted the questionnaires to cover: common symptoms and problems (e.g. pain, fatigue), disease and treatment-specific issues (common for patients with similar diagnosis and/or treatment), individual patient-specific issues (usually non-physical, e.g. prognosis, family issues, sexuality) were important to some patients and relevant at specific points in the cancer journey. The timing and scope of enquiry should be flexible and correspond to disease and treatment stages. A model for measurement in clinical practice is proposed combining standard questionnaires with disease/treatment-specific items and a prompt list of items, aiming to facilitate discussion of individual-specific issues and minimize patient burden. Patients' and physicians' views on the clinical value of this approach are described. CONCLUSIONS: The findings emphasized the need for individualized assessment alongside standard measures, for flexible measurement adapted to treatment and follow-up, for clear interpretation of scores and decision guidelines.