What measures have been used to explore the outcomes of family members of critically ill patients: a scoping review.

Claire Brown; Peter Hartley; Faye Forsyth; Leanne M. Boehm; Graham Martin; Isla Kuhn; Natalie Pattison; Bronwen Connolly; Nazir Lone; Valerie Danesh; Joanne McPeake

doi:10.1007/s00134-025-08072-z

What measures have been used to explore the outcomes of family members of critically ill patients: a scoping review.

Claire Brown
, Peter Hartley
, Faye Forsyth
, Leanne M. Boehm
, Graham Martin
, Isla Kuhn
, Natalie Pattison
, Bronwen Connolly
, Nazir Lone
, Valerie Danesh
, Joanne McPeake^*

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

1 Citation (Scopus)

2 Downloads (Pure)

Abstract

Background: Family members of critically ill patients are known to experience short and longer term challenges, including emotional and social problems. To undertake robust future interventional research to support this cohort, we undertook a comprehensive evaluation of the measures used in family outcome research to date.

Design: Scoping review. We searched Medline, PsycINFO, Scopus, CINAHL, and Web of Science (core collection) for articles published between 2000 and 2024 which examined the outcomes of family members of critically ill patients. Data on outcome measures, study design, and population characteristics were extracted from eligible studies.

Results: We reviewed 9873 abstracts and identified 388 eligible unique family member cohorts. Across these studies, there were 59 (15.2%) randomised control trials, 287 (74.0%) observational cohorts, 8 (2.1%) quality improvement programmes, and 34 (8.8%) non-randomised controlled interventional studies. Most research was undertaken in USA, Canada, and Europe (n = 264, 67.5%). A total of 218 different outcomes measures were used across the studies included. In this review, 345 (89%) studies measured emotional or psychological outcomes, 85 (22%) measured family experience outcomes, 65 (17%) measured general functional status, quality of life or well-being outcomes, 35 (9%) measured environmental or social outcomes, and 10 (3%) measured cognitive outcomes.

Conclusions: We identified 388 studies which reported the outcomes of family members of critically ill patients. Over 200 different outcomes measures were utilised, exploring conceptual domains such as quality of life as well as psychological and social outcomes. The majority of studies were observational in nature with variable follow-up timelines. This review has highlighted that a core outcome measure set is essential to enable reliable, robust, and comparable interventional research in this area.

Original language	English
Pages (from-to)	1641-1650
Number of pages	10
Journal	Intensive Care Medicine
Volume	51
Issue number	9
Early online date	12 Aug 2025
DOIs	https://doi.org/10.1007/s00134-025-08072-z
Publication status	Published - Sept 2025

Keywords

Caregivers
Critical illness
Family
Outcome assessment
Scoping review

ASJC Scopus subject areas

Critical Care and Intensive Care Medicine

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What measures have been used to explore the outcomes of family members of critically ill patients: a scoping review
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Final published version, 1.33 MBLicence: CC BY-NC

Cite this

@article{699751546d5946a9b3c2e9d35d663581,

title = "What measures have been used to explore the outcomes of family members of critically ill patients: a scoping review.",

abstract = "Background: Family members of critically ill patients are known to experience short and longer term challenges, including emotional and social problems. To undertake robust future interventional research to support this cohort, we undertook a comprehensive evaluation of the measures used in family outcome research to date. Design: Scoping review. We searched Medline, PsycINFO, Scopus, CINAHL, and Web of Science (core collection) for articles published between 2000 and 2024 which examined the outcomes of family members of critically ill patients. Data on outcome measures, study design, and population characteristics were extracted from eligible studies. Results: We reviewed 9873 abstracts and identified 388 eligible unique family member cohorts. Across these studies, there were 59 (15.2\%) randomised control trials, 287 (74.0\%) observational cohorts, 8 (2.1\%) quality improvement programmes, and 34 (8.8\%) non-randomised controlled interventional studies. Most research was undertaken in USA, Canada, and Europe (n = 264, 67.5\%). A total of 218 different outcomes measures were used across the studies included. In this review, 345 (89\%) studies measured emotional or psychological outcomes, 85 (22\%) measured family experience outcomes, 65 (17\%) measured general functional status, quality of life or well-being outcomes, 35 (9\%) measured environmental or social outcomes, and 10 (3\%) measured cognitive outcomes. Conclusions: We identified 388 studies which reported the outcomes of family members of critically ill patients. Over 200 different outcomes measures were utilised, exploring conceptual domains such as quality of life as well as psychological and social outcomes. The majority of studies were observational in nature with variable follow-up timelines. This review has highlighted that a core outcome measure set is essential to enable reliable, robust, and comparable interventional research in this area.",

keywords = "Caregivers, Critical illness, Family, Outcome assessment, Scoping review",

author = "Claire Brown and Peter Hartley and Faye Forsyth and Boehm, \{Leanne M.\} and Graham Martin and Isla Kuhn and Natalie Pattison and Bronwen Connolly and Nazir Lone and Valerie Danesh and Joanne McPeake",

year = "2025",

month = sep,

doi = "10.1007/s00134-025-08072-z",

language = "English",

volume = "51",

pages = "1641--1650",

journal = "Intensive Care Medicine",

issn = "0342-4642",

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AU - Brown, Claire

AU - Hartley, Peter

AU - Forsyth, Faye

AU - Boehm, Leanne M.

AU - Martin, Graham

AU - Kuhn, Isla

AU - Pattison, Natalie

AU - Connolly, Bronwen

AU - Lone, Nazir

AU - Danesh, Valerie

AU - McPeake, Joanne

PY - 2025/9

Y1 - 2025/9

N2 - Background: Family members of critically ill patients are known to experience short and longer term challenges, including emotional and social problems. To undertake robust future interventional research to support this cohort, we undertook a comprehensive evaluation of the measures used in family outcome research to date. Design: Scoping review. We searched Medline, PsycINFO, Scopus, CINAHL, and Web of Science (core collection) for articles published between 2000 and 2024 which examined the outcomes of family members of critically ill patients. Data on outcome measures, study design, and population characteristics were extracted from eligible studies. Results: We reviewed 9873 abstracts and identified 388 eligible unique family member cohorts. Across these studies, there were 59 (15.2%) randomised control trials, 287 (74.0%) observational cohorts, 8 (2.1%) quality improvement programmes, and 34 (8.8%) non-randomised controlled interventional studies. Most research was undertaken in USA, Canada, and Europe (n = 264, 67.5%). A total of 218 different outcomes measures were used across the studies included. In this review, 345 (89%) studies measured emotional or psychological outcomes, 85 (22%) measured family experience outcomes, 65 (17%) measured general functional status, quality of life or well-being outcomes, 35 (9%) measured environmental or social outcomes, and 10 (3%) measured cognitive outcomes. Conclusions: We identified 388 studies which reported the outcomes of family members of critically ill patients. Over 200 different outcomes measures were utilised, exploring conceptual domains such as quality of life as well as psychological and social outcomes. The majority of studies were observational in nature with variable follow-up timelines. This review has highlighted that a core outcome measure set is essential to enable reliable, robust, and comparable interventional research in this area.

AB - Background: Family members of critically ill patients are known to experience short and longer term challenges, including emotional and social problems. To undertake robust future interventional research to support this cohort, we undertook a comprehensive evaluation of the measures used in family outcome research to date. Design: Scoping review. We searched Medline, PsycINFO, Scopus, CINAHL, and Web of Science (core collection) for articles published between 2000 and 2024 which examined the outcomes of family members of critically ill patients. Data on outcome measures, study design, and population characteristics were extracted from eligible studies. Results: We reviewed 9873 abstracts and identified 388 eligible unique family member cohorts. Across these studies, there were 59 (15.2%) randomised control trials, 287 (74.0%) observational cohorts, 8 (2.1%) quality improvement programmes, and 34 (8.8%) non-randomised controlled interventional studies. Most research was undertaken in USA, Canada, and Europe (n = 264, 67.5%). A total of 218 different outcomes measures were used across the studies included. In this review, 345 (89%) studies measured emotional or psychological outcomes, 85 (22%) measured family experience outcomes, 65 (17%) measured general functional status, quality of life or well-being outcomes, 35 (9%) measured environmental or social outcomes, and 10 (3%) measured cognitive outcomes. Conclusions: We identified 388 studies which reported the outcomes of family members of critically ill patients. Over 200 different outcomes measures were utilised, exploring conceptual domains such as quality of life as well as psychological and social outcomes. The majority of studies were observational in nature with variable follow-up timelines. This review has highlighted that a core outcome measure set is essential to enable reliable, robust, and comparable interventional research in this area.

KW - Caregivers

KW - Critical illness

KW - Family

KW - Outcome assessment

KW - Scoping review

U2 - 10.1007/s00134-025-08072-z

DO - 10.1007/s00134-025-08072-z

M3 - Article

C2 - 40794169

AN - SCOPUS:105013379258

SN - 0342-4642

VL - 51

SP - 1641

EP - 1650

JO - Intensive Care Medicine

JF - Intensive Care Medicine

IS - 9

ER -

What measures have been used to explore the outcomes of family members of critically ill patients: a scoping review.

Abstract

Keywords

ASJC Scopus subject areas

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