Intensive Care & Family Presence

Skip anything

Every question is optional. No one has to retell painful events, name a diagnosis, or choose a religion or identity to begin.

Pause or stop

Stop at any point. Nothing is sent anywhere, and nothing is shared unless the person chooses it in the sharing review.

Whose words

Record who said each thing: the person, a caregiver or surrogate, or a professional. A caregiver's needs get their own field.

Support to take part

Extra time, a quieter place, pictures, an interpreter or a trusted person can help someone say what matters. Ask what helps.

Barriers are not preferences

Cost, travel, work, housing, caring for others and digital access are written down as barriers, not as what the person wants.

Meaning, religious or not

Hope, purpose, faith, relationships and identity can be part of the conversation if the person wants. None is assumed.

• Intensive care doctor: The medical picture, options and what each could mean for the patient.
• Critical care nurse: Day-to-day care, visiting, and how the family can take part.
• Social worker: Practical and emotional support for the family, and who speaks for the patient.
• Palliative care team: Symptom relief and goals-of-care conversations, where such a team exists.
• Chaplain or spiritual-care provider: Meaning, distress, hope and relationships, for people of any faith or none.
• Interpreter or communication specialist: Language and communication support so the person's own words come through.
• People the person chooses: Family, friends, or a community or faith contact, only if the person wants them. Never assumed safe, available or wanted.

Roles, titles and training differ by country and service. Not every role exists everywhere.

A purposive sample chosen for contrast, not a ranking or a representative survey: United States, Brazil, France, South Africa, Saudi Arabia, India, China, Australia, Multi-country. Each example states what its source establishes and what it does not. Policy on paper is not proof that a service is available.

• United States · Guidance · 2017

  The Society of Critical Care Medicine's 2017 guidelines for family-centered ICU care made 23 recommendations on communication with family members, family presence, family support, consultations and team members, and operational and environmental issues.

  What others could learn: A unit reviewing how it supports families can use the guideline's five topic areas as a checklist: communication, presence, support, consultations and team members, and the unit's operations and environment. Patients and families helped confirm which interventions and outcomes mattered.

  Conditions, limits and source

  Conditions that matter:

  Developed under Council of Medical Specialty Societies principles with no industry funding. The abstract sets no staffing, space or cost requirements; putting the topics into practice depends on staff time for families, room for families on the unit and access to consultation services.

  Cannot be inferred:

  Does not show that any ICU follows the guideline, or that following it improves patient or family outcomes. Because every recommendation was weak, it does not establish which family interventions are most effective.

  Limits:

  Abstract only; the journal site and doi.org were unreachable, so the 23 recommendations were not read one by one. The abstract states that all recommendations were weak. Published in 2017 and not checked for later revisions. Panel affiliations in the abstract are in the United States, Canada, France, Israel, Germany, New Zealand and the Netherlands.

  Source: Society of Critical Care Medicine guideline panel (Davidson JE, Aslakson RA, Long AC, et al.); Critical Care Medicine; abstract via PubMed, Guidelines for Family-Centered Care in the Neonatal, Pediatric, and Adult ICU. (Abstract, Results (Crit Care Med 2017;45(1):103-128)). Where: United States (Society of Critical Care Medicine guideline, 29-member international panel). Population: Family members of critically ill neonates, children and adults. Published 2017-01; retrieved 2026-10-11.

• Brazil · Measured outcome · 2019

  In a cluster-crossover trial in 36 Brazilian adult ICUs (2017 to 2018), family members had lower anxiety and depression symptom levels with flexible visiting (up to 12 hours daily) than with restricted visiting; patient delirium did not differ.

  What others could learn: Opening visiting hours, paired with education for families, was tested across many ICUs in a middle-income country. The trial counted families' own symptoms as well as a patient outcome, so a unit reviewing visiting rules can weigh effects on families in their own right.

  Conditions, limits and source

  Conditions that matter:

  Flexible visiting came with family education. Six of nine secondary outcomes did not differ, including ICU-acquired infections and staff burnout. The trial ran through a national ICU research network.

  Cannot be inferred:

  Does not show that flexible visiting reduces delirium. Does not show long-term effects on family mental health (reported in a later paper not reviewed here). Not a representative sample of Brazilian ICUs. Says nothing about pediatric or neonatal units.

  Limits:

  Abstract only; the PMC record holds no full text and the publisher site and doi.org were unreachable. Family anxiety and depression were secondary outcomes; the primary outcome, patient delirium, was not reduced (18.9% vs 20.1%). 1060 of 1295 family members (81.8%) completed the trial. Mean daily visiting rose to 4.8 hours, not 12. Several authors reported grants from the coordinating hospital association.

  Source: JAMA (Rosa RG, Falavigna M, da Silva DB, et al.; ICU Visits Study Group and the Brazilian Research in Intensive Care Network); abstract via PubMed, Effect of Flexible Family Visitation on Delirium Among Patients in the Intensive Care Unit: The ICU Visits Randomized Clinical Trial. (Abstract, Results; delirium result in the same paragraph and in Conclusions and Relevance (JAMA 2019;322(3):216-228)). Where: Brazil (36 adult ICUs). Population: Adult ICU patients, their family members and ICU clinicians: 1685 patients, 1295 family members and 826 clinicians enrolled. Published 2019-07-16; retrieved 2026-10-11.

• France · Measured outcome · 2019

  In a trial in 35 French ICUs (2015 to 2017), an ICU diary written by clinicians and family members did not significantly reduce significant PTSD symptoms among mechanically ventilated patients at 3 months.

  What others could learn: A practice that involves families, such as writing an ICU diary, is not automatically a treatment for later PTSD symptoms. A unit that offers diaries can be clear with families about what they have and have not been shown to do.

  Conditions, limits and source

  Conditions that matter:

  Diaries were written during the ICU stay by both clinicians and family members, which needs staff time and family access to the bedside.

  Cannot be inferred:

  Does not show that diaries harm patients or families, or that they have no other value. Does not apply directly to patients who were not ventilated, to pediatric units, or to diaries written by families alone.

  Limits:

  Abstract only; the PMC record holds no full text and the publisher site and doi.org were unreachable. Only 339 of 657 randomized patients (51.6%) completed the trial. The abstract reports no significant difference in any of 6 prespecified secondary outcomes, which included family members' PTSD symptoms, but gives no family figures.

  Source: JAMA (Garrouste-Orgeas M, Flahault C, Vinatier I, et al.); abstract via PubMed, Effect of an ICU Diary on Posttraumatic Stress Disorder Symptoms Among Patients Receiving Mechanical Ventilation: A Randomized Clinical Trial. (Abstract, Conclusions and Relevance; secondary outcomes in Results (JAMA 2019;322(3):229-239)). Where: France (35 ICUs). Population: Adults in the ICU for at least 2 days who received mechanical ventilation, and their family members; 657 patients randomized, 339 assessed at 3 months. Published 2019-07-16; retrieved 2026-10-11.

• South Africa · Reported experience · 2025

  Seven bereaved family members interviewed after treatment withdrawal and death in one 18-bed adult ICU in Johannesburg, South Africa, described seeking physical presence, active participation and spiritual support.

  What others could learn: When treatment was withdrawn, families in this unit wanted to be at the bedside, to take part in care and to have spiritual support, alongside clear and compassionate communication. A team can ask each family about these directly rather than assume the answer.

  Conditions, limits and source

  Conditions that matter:

  Families were first approached after routine physician counseling sessions on poor prognosis and limits of care. The authors note South Africa's ethnic and language diversity and call for linguistically accessible communication. A clinical psychologist was available to participants.

  Cannot be inferred:

  Does not represent South African ICUs or families who do not speak English. Does not measure whether presence or participation changed grief outcomes. Does not describe what any religion holds about withdrawal of treatment.

  Limits:

  Single ICU and a small sample of seven, all fluent in English; the authors call the sample small and relatively homogenous. Interviews took place 6 months or more after the death, with possible recall bias. Recruitment ran under COVID-19 visiting restrictions. The authors are nurses, two of whom had worked in the study setting.

  Source: Nursing in Critical Care (Korsah EK, Schmollgruber S, Abukari AS); PMC full text, Bereaved Families' Experiences of Treatment Withdrawal and End-Of-Life Care in the Intensive Care Unit: An Exploratory-Descriptive Qualitative Study. (Abstract, Results; setting and dates in Methods; limitations in Discussion (PMC12552849)). Where: South Africa (Johannesburg). Population: Adult relatives (parent, sibling, spouse), fluent in English, bereaved 6 months or more after a relative died in the ICU following treatment withdrawal; 7 participants. Published 2025-11; retrieved 2026-10-11.

• Saudi Arabia · Reported experience · 2013

  In interviews with 12 family members of patients in eight mixed medical-surgical ICUs in Saudi Arabia (2011 to 2012), families described staying close to their ill relative as of the greatest importance.

  What others could learn: The six themes were looking for information, maintaining reassurance, spiritual healing, maintaining close proximity, involvement in care, and support not being facilitated. Asking a family which of these matters most now can guide what the team offers.

  Conditions, limits and source

  Conditions that matter:

  Families reported unmet needs, including information and support. Participants described their own spiritual practices as easing stress and sustaining hope; room and time for these depend on unit rules and layout.

  Cannot be inferred:

  Does not represent all families or ICUs in Saudi Arabia. Does not state what any religion requires. Does not show whether more open visiting would change families' experience.

  Limits:

  Abstract only; the publisher site and doi.org were unreachable. Small sample of 12. Data are from 2011 to 2012, so unit rules may since have changed. The abstract does not describe the units' visiting policies. The study aim was framed around culture and religion; this record reports only the proximity finding.

  Source: Nursing in Critical Care (Al-Mutair AS, Plummer V, Clerehan R, O'Brien A); abstract via PubMed, Needs and experiences of intensive care patients' families: a Saudi qualitative study. (Abstract, Results (Nurs Crit Care 2014;19(3):135-44)). Where: Saudi Arabia (eight major trauma hospitals). Population: Closest family members of ICU patients; 12 participants, mean age 44.25 years. Published 2013-10-13; retrieved 2026-10-11.

• India · Service in operation · 2026

  At a public tertiary hospital in Odisha, India (2021 to 2024), a co-designed program prepared family carers to take tracheostomized ICU survivors home, with structured training, a mobile platform, an equipment rental bank and follow-up visits.

  What others could learn: Where long-term care facilities are scarce and costly, families can be trained and equipped to continue care at home with a line back to the ICU team. Carers often preferred WhatsApp, which they already used, over the purpose-built app.

  Conditions, limits and source

  Conditions that matter:

  Funded by the National Health Mission, Odisha, and a Wellcome research collaboration. Equipment was rented free for the first month. Tools were translated into Odia and Bengali. Barriers named included carer reluctance in younger trauma cases, medicolegal concerns and socioeconomic constraints.

  Cannot be inferred:

  Does not show that going home is safer or better for patients than staying in hospital. Does not show that the program continues or would work in other hospitals.

  Limits:

  Single center. Formative evaluation with no comparison group; readmissions, complications and financial impact were not assessed. The authors note possible selection bias for the psychometric assessments. Psychological and social support for carers was not formally included. The evaluating team is based at the hospital that runs the program.

  Source: PLOS ONE (Tripathy S, Shetty AP, Hansda U, et al.); PMC full text, Family-led post-ICU discharge intervention for tracheostomized patients in India: Feasibility and formative impact evaluation. (Abstract, Methods; setting, funding and limitations in the full text (PMC13221049)). Where: India (Odisha). Population: Tracheostomized ICU survivors and their family carers; 300 patient-carer pairs enrolled of 314 eligible. Published 2026-05-29; retrieved 2026-10-11.

• China · Reported experience · 2025

  In an ethnography of one general adult ICU in China (2021) with 30 minutes of visiting a day, researchers found the restricted visiting policy positioned family members as outsiders, limiting their access, information and involvement in care.

  What others could learn: Families kept vigil in the waiting area and made it a shared support space; the one relative allowed in relayed updates to the rest. Waiting areas and information for the wider family are part of family presence, not only bedside hours.

  Conditions, limits and source

  Conditions that matter:

  The ICU was behind a locked door, and the waiting area was an open space with about 12 chairs. Interviews were in Mandarin. The authors link visiting in this setting to filial piety and intergenerational solidarity.

  Cannot be inferred:

  Does not represent ICUs across China or show how visiting rules vary between hospitals. Does not measure family or patient outcomes.

  Limits:

  Single ICU; the authors call the findings context-specific. Fieldwork ran during COVID-19, when visitors were limited to one per patient, so findings may be time-specific. 'Outsider' and 'insider' are the authors' analytic terms, not participants' words.

  Source: Journal of Advanced Nursing (Zhu L, Kean S, Clarissa C, Tocher J); PMC full text, 'Being an Outsider' and 'Being an Insider': A Focused Ethnography of Family Members' Visitation Experiences in an Adult ICU. (Abstract, Results; visiting time in Methods (setting, Table 1); limitations in Discussion (PMC13267465)). Where: China (one tertiary hospital). Population: Family members of adult ICU patients; 19 interviewed. Published 2025-11-03; retrieved 2026-10-11.

• Australia · Measured outcome · 2023

  In a records audit of 430 adults who died in 2018 in four Melbourne ICUs, 14.9% preferred a language other than English, and professional interpreters were used in 4.9% (n = 21) of family meetings.

  What others could learn: Checking records for whether an interpreter was present at family meetings is a simple way to find a gap. The same audit found nurses documented as present in 49.3% of treatment-limitation discussions, where they supported family members.

  Conditions, limits and source

  Conditions that matter:

  Depends on professional interpreters being available when family meetings happen, and on recording preferred language; the abstract does not describe interpreter services at these hospitals.

  Cannot be inferred:

  Does not show that each family needing an interpreter went without one, or that outcomes differed. Does not describe ICUs outside Melbourne.

  Limits:

  Abstract only; the publisher site and doi.org were unreachable. Relies on what was documented, so unrecorded interpreter use is missed. The abstract does not give the denominator behind 4.9% (21 of 430 patients is 4.9%) or how many meetings involved relatives with limited English, so unmet need cannot be calculated. Four ICUs in one city.

  Source: Australian Critical Care (Brooks LA, Manias E, Bloomer MJ); abstract via PubMed, A retrospective descriptive study of medical record documentation of how treatment limitations are communicated with family members of patients from culturally diverse backgrounds. (Abstract, Results (Aust Crit Care 2024;37(3):475-482)). Where: Australia (Melbourne, Victoria). Population: Adults who died in ICU in 2018 and their family members; 430 patient records. Published 2023-06-18; retrieved 2026-10-11.

• United States · Measured outcome · 2022

  In a trial in five ICUs at one US Midwestern academic center (2018 to 2021), surrogate decision-makers offered proactive, semi-structured chaplain visits had lower anxiety at follow-up than those receiving usual care.

  What others could learn: The chaplains reached out first instead of waiting for a referral, then made scheduled visits, weekly follow-up and bereavement calls. The framework was designed to include religious and non-religious surrogates.

  Conditions, limits and source

  Conditions that matter:

  Delivered by board-certified chaplains who were not the units' regular chaplains, with time for scheduled visits and follow-up. Chaplaincy staffing and funding vary between hospitals and countries.

  Cannot be inferred:

  Does not show effects on patients, or in hospitals without chaplaincy services. Given the sample, does not show that the effect holds for surrogates of other faiths or none. Does not state what any religion requires.

  Limits:

  One academic center; 128 of 192 pairs (67%) completed follow-up. The authors note low representation of faiths other than Christianity and few Asian or Latino participants; 70.7% of surrogates were Protestant. Five study chaplains delivered the intervention. Too small to assess end-of-life treatment.

  Source: Journal of Pain and Symptom Management (Torke AM, Varner-Perez SE, Burke ES, et al.); PMC author manuscript, Effects of Spiritual Care on Well-Being of Intensive Care Family Surrogates: A Clinical Trial. (Abstract, Results; setting, chaplain details and limitations in the author manuscript (PMC10129066)). Where: United States (Indianapolis, Indiana). Population: Family surrogate decision-makers for adult ICU patients unable to make medical decisions; 192 patient-surrogate pairs enrolled, 128 assessed. Published 2022-12-14; retrieved 2026-10-11.

• Multi-country · Service in operation · 2024

  In a 2022 survey of 359 ICUs reached through the European Society of Intensive Care Medicine, 62% in Europe, median visiting was 6 hours a day; 54% allowed night visits and 29% let relatives sleep there.

  What others could learn: Visiting hours, night visits, a place to sleep, a family information leaflet (59% of ICUs) and a family room (41%) are concrete features a unit can check in itself. Higher self-rated family-centeredness went with family involvement in rounds and in care.

  Conditions, limits and source

  Conditions that matter:

  Few ICUs had a nurse facilitator (18%) or a dedicated psychologist (36%); 58% had a social worker. Burnout symptoms, reported by 41% of respondents, were negatively associated with family-centeredness.

  Cannot be inferred:

  Does not show what families experienced or any outcome for them. Does not support comparisons between countries or regions, because the samples are small and not representative.

  Limits:

  Self-reported by one person per ICU. 359 of 683 ICUs that opened the invitation responded (24% of all ICUs reached). The authors state the sample is not representative of ICUs in each region. Senior physicians are highly represented and allied professionals few.

  Source: Annals of Intensive Care (Azoulay E, Kentish-Barnes N, Boulanger C, et al.); PMC full text, Family centeredness of care: a cross-sectional study in intensive care units part of the European society of intensive care medicine. (Results, opening section (PMC11109056)). Where: Multi-country (ICUs of ESICM affiliates: Europe 62%, Asia 9%, South America 6%, North America 5%, Middle East 4%, Australia and New Zealand 4%, missing 10%). Population: One physician or nurse per ICU answering for the unit (83% physicians). Published 2024-05-21; retrieved 2026-10-11.

• The sourced examples include guidance, measured outcome, reported experience, service in operation. Each quote was matched to the source text; that is not independent expert review.
• The prompts and fictional case are original. They have not been tested with patients, caregivers or clinicians.
• Whether this workflow helps anyone is an open research question.
• Content is in English. Interface translations are not reviewed for this topic.