A family information brochure and dedicated website to improve the ICU experience for patients’ relatives: an Italian multicenter before-and-after study

Mistraletti, Giovanni; Umbrello, Michele; Mantovani, E.; Moroni, Benedetta; Formenti, Paolo; Spanu, P.; Anania, Stefania; Andrighi, Elisa; Carlo, A Di; Martinetti, Federica; Vecchi, Irene; Palo, Alessandra; Pinna, Cristina; Russo, R; Francesconi, Silvia; Valdambrini, Federico; Ferretti, Enrica; Radeschi, G; Bosco, Edda; Malacarne, P; Iapichino, G.

doi:10.1007/s00134-016-4592-0

Cited by 61 publications

(62 citation statements)

References 40 publications

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“…As the effects of critical illness on ICU families[24,25,31] have been recognized, research aimed at understanding family-member needs[32–34], and improving their mental health outcomes[35,36] has expanded. Both eligibility criteria and consent rate for existing studies vary substantially.…”

Section: Discussionmentioning

confidence: 99%

Evaluation of a strategy for enrolling the families of critically ill patients in research using limited human resources

et al. 2017

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RationaleClinical trials of interventions aimed at the families of intensive care unit (ICU) patients have proliferated but recruitment for these trials can be challenging.ObjectivesTo evaluate a strategy for recruiting families of patients currently being treated in an ICU using limited human resources and time-varying daily screening over 7 consecutive daysMethodsWe screened the Johns Hopkins Hospital medical ICU census 7 days per week to identify eligible family members. We then made daily, in-person attempts to enroll eligible families during a time-varying 2-hour enrollment period until families declined participation, consented, or were no longer eligible.Measurements and main resultsThe primary outcome was the proportion of eligible patients for whom ≥1 family member was enrolled. Secondary outcomes included enrollment of legal healthcare proxies, the consent rate among families approached for enrollment, and success rates for recruiting at different times during the day and week. Among 284 eligible patients, 108 (38%, 95% CI 32%-44%) had ≥1 family member enrolled, and 75 (26%, 95% CI 21%-32%) had their legal healthcare proxy enrolled. Among 117 family members asked to participate, 108 (92%, 95% CI 86%-96%) were enrolled. Patients with versus without an enrolled proxy were more likely to be white (44% vs. 30%, P = .02), live in a zip code with a median income of ≥$100,000 (15% vs. 5%, P = .01), be mechanically ventilated (63% vs. 47%, P = .01), die in the ICU (19% vs. 9%, P = .03), and to have longer ICU stays (median 5.0 vs. 1.8 days, P<.001). Day of the week and time of day were not associated with family presence in the ICU or consent rate.ConclusionsFamily members were recruited for more than one third of eligible patients, and >90% of approached consented to participate. There are important demographic differences between patients with vs without an enrolled family member.

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Section: Discussionmentioning

confidence: 99%

Evaluation of a strategy for enrolling the families of critically ill patients in research using limited human resources

et al. 2017

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“…Providing ICU families with an informational leaflet is endorsed by the Agency for Healthcare Research and Quality as a process measure of high quality palliative care in the ICU [ 43 ]. Previous leaflets designed for use in the ICU [ 29 , 44 – 47 ] have largely targeted the families of dying patients, and provided information about the clinical environment such as commonly used medical jargon, procedures, ICU rules, and explanations of the equipment in a patient’s room. Our intervention was markedly different from previous leaflets in four important ways.…”

Section: Discussionmentioning

confidence: 99%

A brief intervention for preparing ICU families to be proxies: A phase I study

2017

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BackgroundFamily members of critically ill patients report high levels of conflict with clinicians, have poor understanding of prognosis, struggle to make decisions, and experience substantial symptoms of anxiety, depression, and post-traumatic stress regardless of patient survival status. Efficient interventions are needed to prepare these families to act as patient proxies.ObjectivesTo assess a brief “patient activation” intervention designed to set expectations and prepare families of adult intensive care unit (ICU) patients to communicate effectively with the clinical team.DesignPhase I study of acceptability and immediate side effects.Setting and participants122 healthcare proxies of 111 consecutive patients with a stay of ≥24 hours in the Johns Hopkins Hospital Medical ICU (MICU), in Baltimore, Maryland.InterventionReading aloud to proxies from a booklet (Flesch-Kincard reading grade level 3.8) designed with multidisciplinary input including from former MICU proxies.ResultsEnrolled proxies had a median age of 51 years old with 83 (68%) female, and 55 (45%) African-American. MICU mortality was 18%, and 37 patients (33%) died in hospital or were discharged to hospice. Among proxies 98% (95% CI: 94% - 100%) agreed or strongly agreed that the intervention was appropriate, 98% (95% CI: 92% - 99%) agreed or strongly agreed that it is important for families to know the information in the booklet, and 54 (44%, 95% CI 35%– 54%) agreed or strongly agreed that parts of the booklet are upsetting. Upset vs. non-upset proxies were not statistically or substantially different in terms of age, sex, education level, race, relation to the patient, or perceived decision-making authority.ConclusionsThis patient activation intervention was acceptable and important to nearly all proxies. Frequently, the intervention was simultaneously rated as both acceptable/important and upsetting. Proxies who rated the intervention as upsetting were not identifiable based on readily available proxy or patient characteristics.

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“…38 However, a multicenter Italian prospective parallel study evaluating the role of an information brochure and ICU education web site improved surrogates prognostic understanding (69-84%, p ¼ 0.04) and reduced PTSD symptoms. 39 Another cardiac surgery ICU study in Pittsburgh demonstrated a reduction in anxiety symptoms among family members after the introduction of a cardiac surgery toolkit, an educational and informative tool, for family members. 37 A similar CPR video-based education study revealed improved understanding among the intervention group, with 98% thinking it was a helpful adjunct to a code status discussion.…”

Section: Communication Aidsmentioning

confidence: 99%

Family-Centered Care in the Intensive CareUnit—What Does Best Practice Tell Us?

Ludmir

Netzer

2019

Semin Respir Crit Care Med

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Families in the intensive care unit (ICU) experience high-stress levels and are at risk of developing psychological symptoms including depression, anxiety, and posttraumatic stress disorder (PTSD). Family-centered care defines an approach that encompasses respect, compassion, and support for families. By alleviating stress and anxiety, this approach can increase family satisfaction, improve communication with staff, and decrease ICU length of stay. Family-centered care relies on an interdisciplinary approach. Its components include daily family-centered rounds, frequent family meetings, and ensuring an adequate family support environment. Each of the components of family-centered care depend on adequately trained clinical staff who are champion in empathetic communication and constantly support family member throughout an ICU stay.

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A family information brochure and dedicated website to improve the ICU experience for patients’ relatives: an Italian multicenter before-and-after study

Abstract: An information brochure and website designed to meet relatives' needs improved family members' comprehension and reduced their prevalence of stress symptoms.

Cited by 61 publications

References 40 publications

Evaluation of a strategy for enrolling the families of critically ill patients in research using limited human resources

Evaluation of a strategy for enrolling the families of critically ill patients in research using limited human resources

A brief intervention for preparing ICU families to be proxies: A phase I study

Family-Centered Care in the Intensive CareUnit—What Does Best Practice Tell Us?

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