Family-Reported Experiences Evaluation (FREE) study: a mixed-methods study to evaluate families’ satisfaction with adult critical care services in the NHS

Abstract

BackgroundTo improve care it is necessary to feed back experiences of those receiving care. Of patients admitted to intensive care units (ICUs), approximately one-quarter die, and few survivors recollect their experiences, so family members have a vital role. The most widely validated tool to seek their views is the Family Satisfaction in the Intensive Care Unit questionnaire (FS-ICU).ObjectivesTo test face and content validity and comprehensibility of the FS-ICU (phase 1). To establish internal consistency, construct validity and reliability of the FS-ICU; to describe family satisfaction and explore how it varies by family member, patient, unit/hospital and other contextual factors and by country; and to model approaches to sampling for future use in quality improvement (phase 2).DesignMixed methods: qualitative study (phase 1) and cohort study (phase 2).SettingNHS ICUs (n = 2, phase 1;n = 20, phase 2).ParticipantsHealth-care professionals, ex-patients, family members of ICU patients (n = 41, phase 1). Family members of ICU patients (n = 12,303, phase 2).InterventionsNone.Main outcome measuresKey themes regarding each item of the 24-item FS-ICU (FS-ICU-24) (phase 1). Overall family satisfaction and domain scores of the FS-ICU-24 (phase 2).ResultsIn phase 1, face validity, content validity and comprehensibility were good. Adaptation to the UK required only minor edits. In phase 2, one to four family members were recruited for 60.6% of 10,530 patients (staying in ICU for 24 hours or more). Of 12,303 family members, 7173 (58.3%) completed the questionnaire. Psychometric assessment of the questionnaire established high internal consistency and criterion validity. Exploratory factor analysis indicated new domains:satisfaction with care,satisfaction with informationandsatisfaction with the decision-making process. All scores were high with skewed distributions towards more positive scores. For family members of ICU survivors, factors associated with increased/decreased satisfaction were age, ethnicity, relationship to patient, and visit frequency, and patient factors were acute severity of illness and invasive ventilation. For family members of ICU non-survivors, average satisfaction was higher but no family member factors were associated with increased/decreased satisfaction; patient factors were age, acute severity of illness and duration of stay. Neither ICU/hospital factors nor seasonality were associated. Funnel plots confirmed significant variation in family satisfaction across ICUs. Adjusting for family member and patient characteristics reduced variation, resulting in fewer ICUs identified as potential outliers. Simulations suggested that family satisfaction surveys using short recruitment windows can produce relatively unbiased estimates of average family satisfaction.ConclusionsThe Family-Reported Experiences Evaluation study has provided a UK-adapted, psychometrically valid questionnaire for overall family satisfaction and three domains. The large sample size allowed for robust multilevel multivariable modelling of factors associated with family satisfaction to inform important adjustment of any future evaluation.LimitationsResponses to three free-text questions indicate the questionnaire may not be sensitive to all aspects of family satisfaction.Future workReservations remain about the current questionnaire. While formal analysis of the free-text questions did not form part of this proposal, brief analysis suggested considerable scope for improvement of the FS-ICU-24.Study registrationCurrent Controlled Trials ISRCTN47363549.Funding detailsThe National Institute for Health Research Health Services and Delivery Research programme.

Survey of family satisfaction with intensive care units

“…In our study, most of the family members were satisfied with the ICU care and decision-making process, except with the ICU waiting room atmosphere. Although the overall FS-ICU score was relatively high in our study, it was lower than those of the United Kingdom, [ 14 ] Germany, [ 12 ] and Hong Kong (80.3 ± 16.8, 78.3 ± 14.3, and 78.1 ± 14.3, respectively). [ 15 ] In a large qualitative study in the United Kingdom, the overall FS-ICU score was >80, which suggests opportunities for further improving family satisfaction by quality improvement.…”

Experiences of ICU survivors in a low middle income country- a multicenter study

“…ICU experiences, stress and satisfaction were gathered using a telephone questionnaire (Additional file 1 ) adapted from two previous studies [ 2 , 16 ]. The tool from Granja et al has been previously successfully used in an Asian higher-middle income country setting [ 17 ].…”

“…Questions pertaining to direct experience of aspects of care were measured on a five-point Likert scale, as proposed in the original studies; where 0 = ‘I don’t remember’, 1 = ‘It was not hard’, 2 = ‘It was indifferent’, 3 = ‘It was hard’, 4 = ‘It was very hard’ and 5 = ‘It was awful’ [ 2 ]. Patient satisfaction with the different aspects of care were also measured on a Likert scale where 1 = Excellent, 2 = Very good, 3 = Good, 4 = Fair, 5 = Poor and 6 = Not Applicable [ 16 ].…”

Constructing a grounded theory of critical illness survivorship: The dualistic worlds of survivors and family members

“…The findings also highlight the need for a rehabilitation infrastructure to support the existing national guidance, ensuring the holistic needs of survivors and their families are met (Intensive Care Society, , Connolly et al., ; Cotton, ; NICE, ). In comparison with cancer survivors, there is very limited and often no follow‐up care or support pathway for critical illness survivors and their families within the UK health systems nor globally (Iwashyna, ; Wright et al., ). Further specific recommendations for clinical practice include the need to have early conversations with survivors and their families around critical illness survivorship.…”