Objective:The objective of this scoping review is threefold: (1) to describe outcomes of and determinants for physical functioning in pediatric intensive care unit (PICU) survivors evaluated during and/or after their PICU stay, (2) to provide an overview how physical functioning and its associated determinants in this population are reported, measured and classified in accordance with the International classification of Functioning, Disability and Health-Children and Youth framework (ICF-CY) components and (3) to synthesize key gaps in knowledge and research and clinical recommendations related to our review questions.Introduction:Optimal physical functioning in children is of major importance in their developmental trajectories and for the prevention and recovery of health problems across lifespan. PICU children are at high risk of poor physical functioning during and after critical illness. A recent overview of the literature, concerning evaluation of physical functioning in PICU survivors according to the ICF-CY components, is lacking. Inclusion criteria:This review includes empirical studies reporting outcomes and determinants of physical functioning in PICU survivors evaluated during and/or after PICU stay. All English language studies reporting empirical data will be included with no restrictions set on the types of study designs used.Methods:This review will be conducted in accordance with the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) statement. To locate studies eligible for inclusion, the electronic databases Pubmed, EMBASE, CINAHL and Cochrane Library will be searched from the earliest records to October 2019. Study selection will be performed by two independent reviewers. Covidence software will be used to screen titles and abstracts as well as the full-text of included studies. Data extraction will be conducted using a customized form. The extracted data will be presented in diagrammatic or tabular form with an accompanying narrative summary.
BACKGROUND: The quality standards of the Dutch Society of Intensive Care require monitoring of the satisfaction of patient's relatives with respect to care. Currently, no suitable instrument is available in the Netherlands to measure this. This study describes the development and psychometric evaluation of the questionnaire-based Consumer Quality Index 'Relatives in Intensive Care Unit' (CQI 'R-ICU'). The CQI 'R-ICU' measures the perceived quality of care from the perspective of patients' relatives, and identifies aspects of care that need improvement.METHODS: The CQI 'R-ICU' was developed using a mixed method design. Items were based on quality of care aspects from earlier studies and from focus group interviews with patients' relatives. The time period for the data collection of the psychometric evaluation was from October 2011 until July 2012. Relatives of adult intensive care patients in one university hospital and five general hospitals in the Netherlands were approached to participate. Psychometric evaluation included item analysis, inter-item analysis, and factor analysis.RESULTS: Twelve aspects were noted as being indicators of quality of care, and were subsequently selected for the questionnaire's vocabulary. The response rate of patients' relatives was 81% (n = 455). Quality of care was represented by two clusters, each showing a high reliability: 'Communication' (α = .80) and 'Participation' (α = .84). Relatives ranked the following aspects for quality of care as most important: no conflicting information, information from doctors and nurses is comprehensive, and health professionals take patients' relatives seriously. The least important care aspects were: need for contact with peers, nuisance, and contact with a spiritual counsellor. Aspects that needed the most urgent improvement (highest quality improvement scores) were: information about how relatives can contribute to the care of the patient, information about the use of meal-facilities in the hospital, and involvement in decision-making on the medical treatment of the patient.CONCLUSIONS: The CQI 'R-ICU' evaluates quality of care from the perspective of relatives of intensive care patients and provides practical information for quality assurance and improvement programs. The development and psychometric evaluation of the CQI 'R-ICU' led to a draft questionnaire, sufficient to justify further research into the reliability, validity, and the discriminative power of the questionnaire.
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Challenging behaviour, such as aggression towards oneself, others, or objects, arises in interaction with the environment and may prevent individuals from participating in society and compromise their quality of life (QoL). Literature suggests that architects can contribute to prevention, by influencing challenging behaviour before rather than after its occurrence. By conducting a case study at a very-intensive-care facility, we explore how architecture can contribute to the QoL of intellectually impaired (and autistic) individuals showing challenging behaviour. The case study is based on interviews with residents and care providers, and direct observations of their daily life. Preliminary findings confirm the relevance of architecture in influencing challenging behaviour. They suggest that the residents are dependent on the (visual and auditory) connection with the care provider. Also, care providers confirm the importance of this connection for the quality of the care they provide. At the same time, residents may experience anxiety triggered by fellow residents and their challenging behaviour. Residents may also feel stress when faced with unexpected situations and this may lead to an onset of challenging behaviour. Sensory sensitivity, specifically to noise and heat is also relevant for their QoL.The findings will be further substantiated through multiple triangulation with available data (personal files, incident reports, photographs). Future research, specifically focused on intellectually impaired individuals showing challenging behaviour, is needed to better understand the similarities and differences between their needs and the needs of autistic people.
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