Family participation in essential care activities: Needs, perceptions, preferences, and capacities of intensive care unit patients, relatives, and healthcare providers d An integrative review

Background: Family participation in essential care activities may bene ﬁ t both patients and relatives. Objectives: In this integrative review, we aimed to identify needs, perceptions, preferences, and capacities regarding family participation in essential care in intensive care units (ICUs) from the patient's, relatives', and ICU healthcare providers' perspective. Review method used: An integrative review method was used. Data sources: PubMed, CINAHL, EMBASE, MEDLINE, Cochrane, Web of Science, and reference lists of included articles were searched, from inception to January 25, 2021. Review methods: We included studies on family participation in essential care activities during ICU stay which reported associated needs, perceptions, preferences and capacities. Quality assessment was performed with the Kmet Standard Quality Assessment Criteria developed for evaluating primary research papers in a variety of ﬁ elds, and an extensive qualitative thematic analysis was performed on the results. Results: Twenty-seven studies were included. Quality scores varied from 0.45 to 0.95 (range: 0 e 1). Patients ’ needs, perceptions, preferences, and capacities are largely unknown. Identi ﬁ ed themes on needs and perceptions were relatives' desire to help the patient, a mostly positive attitude among all involved, stress regarding patient safety, perceived bene ﬁ cial effects, relatives feeling in control d ICU healthcare providers' concerns about loss of control. Preferences for potential essential care activities vary. Relatives want an invitation and support from ICU healthcare providers. Themes regarding capacities were knowledge, skills, education and training, and organisational conditions. Conclusions: Implementation of family participation in essential care requires education and training of relatives and ICU healthcare providers to address safety and quality of care concerns, though most studies lack further speci ﬁ cation. © 2022 Australian College of Critical Care Nurses Ltd. Published by Elsevier Ltd. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).


Introduction
A stay in the intensive care unit (ICU) is stressful for patients.It has been estimated that 50% of ICU survivors suffer from posteintensive care syndrome (PICS), which includes impairments of physical, cognitive, or mental nature.Physical problems include neuromuscular, physical, and pulmonary function and ICUacquired weakness; cognitive problems include attention, memory, planning, processing, problem-solving, and visual-spatial awareness; and psychologic problems include anxiety, symptoms of depression, sleep disturbances, and symptoms of posttraumatic stress disorder (PTSD). 1,2An ICU stay is also stressful for the patient's relatives 3 and can lead to feelings of anxiety and powerlessness. 4,5In 13e56% of relatives, symptoms such as anxiety, depression, and PTSD were reported in this population in the first months after the patient's ICU discharge.These symptoms are known as posteintensive care syndromeefamily (PICS-F) and have a negative impact on quality of life, resumption of work, and healthcare costs. 6,7This implies a large impact on both patients and relatives.
Family participation in essential care activities has been suggested to decrease stress during an ICU stay as it increases the patient's feeling of safety. 8For relatives, the opportunity to actively participate in ICU care may diminish feelings of powerlessness and decrease the chance of developing PICS-F after discharge. 6urthermore, family participation may support relatives in other ways.However, knowledge on the effect of family participation on relatives is still scarce.Olding et al. have described family involvement in the ICU as a continuum, ranging from relatively passive ('presence') to active forms ('contribution to care').They define 'contribution to care' as family participation in essential patient care activities. 9Relatives may participate in, for example, communication, application of lotion, bed bathing, or mobilisation, referred to as essential care activities. 10Family participation in essential care is, however, a complex intervention as it requires a change in behaviour in both ICU healthcare providers and relatives and needs to be tailored to individual needs. 11Therefore, a first step in the development of this intervention is to determine the needs and perceptions and the preferences and capacities of patients, relatives, and ICU healthcare providers regarding family participation in essential care. 12Needs and perceptions address why relatives may need family participation and how they experience it; preferences and capacities address the suggested solution: which activities and which conditions.
While guidelines for family-centred care (FCC) 13 and several reviews have been published, 9,14e18 implying an increased focus on patient-and family-centred care (PFCC), 19 none of these reviews addressed needs, perceptions, preferences, and capacities with regard to family participation from the perspectives of all involved.Therefore, the aim of this integrative review was to identify needs, perceptions, preferences, and capacities related to family participation in essential ICU patient care, from the patient's, relatives', and ICU healthcare providers' perspective.

Methods
An integrative review of the literature was conducted, allowing the inclusion of qualitative and quantitative studies, 20 in accordance with the Cochrane Handbook for Systematic Reviews of Interventions. 21This integrative review was reported in concordance with the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) statement. 22

Study selection procedure
Studies were included when reporting family participation in essential patient care during ICU stay and needs, perceptions, preferences, and capacities from the patient's, relatives', and ICU healthcare providers' perspective.Studies were eligible when published in English or Dutch.
Studies concerning neonatal or paediatric (age <18 years) population and studies that focused on family presence and/or participation in rounds, end-of-life care (EOLC), resuscitation, or invasive procedures were excluded.Conference abstracts, narrative reviews, editorials, and personal communication were also excluded.
After removal of duplicates, studies were screened on title and abstract by two independent reviewers (BD, LV), disagreements were resolved through discussion.The remaining articles were screened full-text by couples of two independent reviewers (BD, KF, MvdV, LV).In addition, reference lists of included articles were screened (BD, KF, MvdV, LV) and potentially relevant publications were selected using similar methods (BD, KF, MvdV, LV).

Quality assessment
To assess the quality of observational studies and qualitative studies a tool developed by Kmet et al. 23 was used.Total quality score for this tool ranged from 0 to 1, with 1 being the highest possible score.The quality assessment was performed by pairs of two independent researchers (BD, KF, MvdV, RE, LV).Disagreement was resolved through discussion, if needed with a third reviewer.

Data extraction
Data were extracted by three independent researchers (BD, KF, MvdV) and verified by four other researchers (HvdH, LS, RE, LV).

Data analysis
Due to the amount of non-randomised and qualitative designs, a meta-analysis of the included studies was not possible.Instead, after coding the results sections of included studies, an extensive qualitative thematic analysis was performed on the extracted data by two researchers (BD, KF), following Braun & Clark. 24All data within each theme were examined and agreed to by all researchers.

Review statistics
After duplicate removal, 6698 records were screened.A total of 324 full-text articles were assessed, 305 from database searching and 19 from reference lists, and 27 studies were included (see Fig. 1).A list of excluded articles (n ¼ 297) is provided in Appendix 2.

Quality assessment
The quality of the quantitative and mixed-method designs was mostly moderate with a Kmet score ranging from 0.50 to 0.95 (see supplementary Table 2.1).The qualitative study scores ranged from 0.45 to 0.90, also mostly moderate (see supplementary Table 2.2).

Themes
Five themes representing needs and perceptions of patients, relatives, and ICU healthcare providers regarding family participation in essential care were identified: desire to help the patient and feel useful; (positive) attitude; stress; perceived effects; feeling in controleloss of control.Another five themes representing preferences and capacities were identified: potential essential care activities; invitation and support: an individualised approach; knowledge, skills, education, and training; patients' and relatives' characteristics and organisational conditions.
For each theme, results are summarised separately for each of the three populations (patients, relatives, and ICU healthcare providers) (also see Tables 3, 4, and 5).If a certain population is not listed within a specific theme, then no studies were found for that population related to that theme.

Desire to help the patient and feel useful
The first theme, the desire to help the patient and feel useful, was described in 10 studies.36e38,42,44,46,48,49

(Positive) attitude
The second theme (positive) attitude, among patients, relatives, and ICU healthcare providers was described in 12 studies.
One study reported a majority of the patients (77.2%) being in favour of family participation in essential care.The other 22.8% did not want relatives to participate for one or more of the following reasons: desire to preserve image, embarrassment, physical modesty, safety, and the notion that ICU nurses are better skilled. 37nother study described some patients as being pragmatic about family participation since they felt unwell or in need of care, 45 implying a positive attitude.
36e38 A minority (3.9e15%) indicated they did not wish to participate in care. 37,38Possible reasons were ICU healthcare providers did their job perfectly, concerns about patient safety and quality of care, lack of adequate information about what family participation actually entails, 26 the patient's condition, 38 and differences in approach between ICU healthcare providers (discouraging relatives to participate). 42he number of ICU healthcare providers with a positive attitude towards family participation also varied: 44.9e98% felt that relatives should participate (on their request).25e27,29,37e39 Individual ICU nurses' characteristics such as higher age, higher degree, and more critical care experience positively influenced attitudes towards family participation. 27n one study, a majority of ICU healthcare providers had a negative attitude; 25 other studies described some individuals' negative attitudes, sometimes related to past negative experiences. 34,37,40

Stress
The third theme, stress, among relatives and ICU healthcare providers was described in 14 studies.Several conditions that are (potentially) stressful for relatives and ICU healthcare providers were described.Some relatives were afraid to touch the patient, in fear of causing harm; others had concerns about annoying or creating      The patient's condition and receptiveness and coping ability of relatives influence the decision to involve relatives Some limit FP to long-term patients, others comment that it depends on the individual situation and the amount of involvement the relatives want 81% considered FP had minimal effect on their workload To control their working time and space The invitation to participate should be initiated by ICU nurses (allowing them to remain in control over their work environment, and evidence suggests that when relatives would like to participate, they do not ask to) 'Vision' that the integration of relatives in today's healthcare system (including ICUs) is mandatory as relatives will become caregivers during an often prolonged recovery trajectory Specific strategies to support ICU nurses in the integration of relatives into the ICU Kydonaki (2020) UK ICU nurses (15)  Felt accountable for patient and family care and some were hesitant involving FM in care for two main reasons: 1) to avoid the risk of slips and errors and 2) to protect relatives from the burden of caring additional work for ICU healthcare providers due to frequent interactions with relatives. 8,32,46,32CU healthcare providers considered the ICU environment stressful for relatives.28,43,45 Some ICU healthcare providers had concerns about adding to the suffering of relatives, patient safety (accidental extubation or adverse events), and quality of care and.26,27,29,34,37,40,44,45 Some ICU healthcare providers perceived the presence of and interaction with (loud and obnoxious) relatives as stressful.25,37,40,45

Perceived effects
The fourth theme, perceived effects, was described in 11 studies.Family participation was perceived to be beneficial in several ways, by patients, relatives, and ICU healthcare providers.
One study reported that patients felt safe and protected when relatives were present. 44ost relatives reported that participating made them feel positive; some felt apprehensive, useless, or helpless; 32,36 other relatives participated not to feel helpless. 44CU healthcare providers generally believed that family participation could benefit patients, 28,43,44, both patients and relatives, 34,35 and might alleviate stress among relatives. 27,36According to Hetland et al., family participation could benefit patient safety and quality of care. 27Furthermore, family participation allowed ICU healthcare providers to build a relationship with relatives. 29,34,38

Feeling in controleloss of control
The fifth theme, feeling in controleloss of control, was described in nine studies.Family participation enabled relatives to feel in control and led to some ICU healthcare providers experiencing loss of control.
Family participation allowed relatives to cope with and regain control over their situation and build resilience 48,49 and adapt to the ICU environment. 38Some perceived family participation as empowering. 47ome ICU healthcare providers had concerns about relatives taking too prominent a place, 26 open visitation policies impacting working conditions, differing opinions between bedside and managing nurses on the patient or both patient and relatives being the focus of care, 39 and controlling their working time and space. 39,40,44,456.Preferences and capacities

Potential essential care activities
The sixth theme, potential essential care activities, was described in 18 studies.Preferences for essential care activities varied between and among relatives and ICU healthcare providers.
More than 70% of the patients were comfortable with eye care, hydrating lips, moistening of the oral cavity, and applying body lotion being performed by relatives 37 (see Table 6).
44e46,48,49 Studies providing sufficient details on descriptive statistics are presented in Table 6.Preferences for essential care activities varied between relatives, making identification of a uniform list impossible.
ICU healthcare providers favoured several essential care activities, again preferences varied. 5,28,31,33,35,37,38,43,44In the studies of Azoulay et al. and Hetland et al., ICU healthcare providers actually invited relatives to perform specific activities 26,27 see Table 6.There is no agreement on essential care activities that can be performed by relatives.
The majority of patients, relatives, and ICU healthcare providers endorsed participation in eye care, moistening of the oral cavity, and applying lip balm and body lotion; however, there was no agreement on participation in bathing and hair washing. 37,38,45ew relatives did not wish to participate in 'private care' (e.g., incontinence or vomit), and some stated that participation depended on their relationship with the patient. 38,45In the study of Wong et al. one-third of the relatives preferred shared participation in physical patient care with ICU healthcare providers, one (3%) preferred an active level, and the majority (60%) preferred a passive level of participation. 41ome ICU healthcare providers experienced difficulties maintaining the patients' privacy, dignity, autonomy, and integrity when relatives provided care and expressed concerns about appropriateness of some care activities, 27,29,35,38,45 again dependent on the relationship between the patient and relative. 38,40,43,45

Invitation and support: an individualised approach
The seventh theme, invitation and support: an individualised approach, was described in 10 studies.Relatives require an invitation and support, individualised to their situation.
Relatives wanted to be invited, encouraged, and supported to participate in essential care by ICU healthcare providers.These ICU healthcare providers need to do this with an open and flexible attitude, 5,8,28,31,42 requiring good communication and information, 5,28,38,42,45 individualised to the patient's and relatives' situation, allowing relatives to select the level, frequency, and complexity of care provided. 5,34,35,38,396.3.Knowledge, skills, education, and training The eighth theme, knowledge, skills, education, and training, was described in 12 studies.Relatives and ICU healthcare providers require knowledge, skills, education, and training to enable safe family participation in essential care.
Family participation requires information for and education of relatives to address patient safety and quality of care concerns. 26,28,33,38,42,46nteractions with relatives in the ICU require competences based on knowledge and skills, as well as attitude and values, and open communication to align the patient's and relatives' needs with the ICU healthcare providers' work situation. 35,43everal studies addressed the need for education, training, and guidelines for ICU healthcare providers to deliver family participation in essential care safely. 25,27,28,33,39,40,46

Characteristics of patients and relatives
The ninth theme, characteristics of patients and relatives, was described in three studies.ICU healthcare providers were negatively influenced to enable family participation by high patient acuity or relatives lacking receptiveness.
High patient acuity decreased ICU healthcare providers' willingness to allow family participation. 27,39,44ccasionally individual relative's receptiveness and coping ability influenced ICU healthcare providers' decision to allow family participation. 39

Organisational conditions
The 10th theme, organisational conditions, was described in 11 studies.Several organisational characteristics and factors had either a positive or a negative influence on family participation, according to ICU healthcare providers.Organisational characteristics such as nursing management identifying relatives as care recipients, 39 a unit culture that valued family engagement and lower staffing ratios, 27 were considered supportive of family participation.Furthermore, family participation was perceived to reduce burden on limited nursing staff 30 and provide nurses with more time for other tasks. 29In addition, family participation requires an open visitation policy. 26,37,39he following organisational factors were perceived to have a negative influence on family participation: lack of time, 25,29,40,43,44, the ICU treatment (turns, doctors' review, assessments, examinations), 34 a lack of resources or compact sized rooms, 25,40 and a lack of hospital policies and guidelines. 25,27,40

Discussion
Our review yielded the following themes, using the addition of Bleijenberg et al. 12 to the Medical Research Council (MRC) framework, 11 on needs and perceptions regarding family participation in essential care activities.The themes were desire to help the patient and feel useful, (positive) attitude, stress, perceived effects, and feeling in controleloss of control.Regarding preferences and capacities, the following themes were identified: potential essential care activities; invitation and support: an individualised approach; knowledge, skills, education, and training; characteristics of patients and relatives; and organisational conditions.These themes should be addressed in the development of an intervention that enables family participation in essential care.No single theme was present in a majority of the reviewed studies.
Family participation in essential care activities in the ICU is possible, but several aspects should be taken into account.The desire to help the patient and feel useful, expressed by relatives, has been endorsed in several reviews. 14,50,51However, research on relatives actively participating in essential care is limited, as Olding et al. have established as well. 9In our integrative review, we have tried to distinguish between the concept of family involvement in care, including both passive forms such as presence and support and active forms such as reading to the patient, and family participation in essential care activities implying active forms only.Furthermore, how family participation should be performed is unknown and requires further research.
Most patients had a positive attitude towards family participation in essential care, though only one study addressed this explicitly. 37In only two other studies, patients' perceptions were described, 44,45 reflecting difficulties studying the patients' perspective.Limited knowledge about patients' needs and perceptions, with regard to family participation in essential care, can be explained by the altered states of consciousness that many ICU patients experience due to sedatives or illness, reducing their ability to express their needs.Relatives usually appear quite capable to act as a spokesperson, though not all relatives know what the patient's needs are.A recent review of ICU patients' needs across the recovery trajectory considered informational, emotional, instrumental, appraisal, and spiritual support needs evident; 52 some of these needs could be addressed through family participation.Future research should aim to gain more insight into the patients' needs, perceptions, preferences, and capacities regarding family participation.
Not only relatives' needs with regard to family participation should be taken into account; concerns about stress among relatives, possibly related to patient acuity, warrants attention for relatives' circumstances, specifically physical and mental strength and possible development of PICS-F.In their review Zante et al. advised to direct future research at individualised prevention of PICS-F, based on risk factors of relatives, a psychologic assessment, and right timing of interventions. 53Xyrichis et al. described similar concerns about relatives' preparedness for involvement. 18This theme should be addressed when family participation is implemented.
Preferences for potential essential care activities, appropriate for family participation, vary.This was also found in recent studies by Liput et al. and Kydonaki et al. 16,45 Therefore, identification of a uniform list of essential care activities that relatives can participate in is impossible.To find a middle ground that facilitates the provision of standardised patient and family care on the one hand and allows an individualised approach on the other hand requires a thorough consideration of preferences of all involved, which have to be taken into account prior to the implementation of family participation in essential care.Most studies focused on physical care activities; only Hetland et al. and Wong et al. described communication and psychosocial care as well. 27,41This may be explained by a movement in recent studies to a broader approach of essential care activities, including both physical and psychosocial care.
Most relatives want to receive an invitation and support of ICU healthcare providers, individualised to their situation, requiring adequate communication and information.Further research to identify the most effective ways to improve communication with relatives is recommended; 13,54 as is an individualised approach. 18,55,56ccording to several survey studies, education and training were deemed necessary to address safety and quality of care concerns, 27,40 though no further specifications were presented; specific safety concerns relate to accidental removal of tubes, catheters, or intravenous lines. 26,32Smithburger et al. propose the use of one-on-one discussions between ICU healthcare providers and relatives to educate and train relatives. 28Depending on the activities that are deemed appropriate, other educational strategies, such as brochures, 'training-on-the-job', and videos may also be useful and require further research.
An intervention aiming at family participation in essential care will need to provide an accurate and detailed description of family participation and corresponding actions and interventions. 26,42his was confirmed by several studies, 9,16,57 warranting further specification of an intervention aiming at family participation in essential care.Also, concerns about loss of control over the work situation of ICU healthcare providers need to be addressed.Aligning the needs of everyone involved requires adequate communicative skills and a flexible attitude. 16,35,39Furthermore, recent studies showed that involvement of stakeholders is essential to promote adherence to an intervention.58e60 Hetland et al. 27 did not present an explanation for the lower staffing ratios positively influencing ICU healthcare providers' attitudes towards family participation.Correspondingly, family participation to address personnel shortage or enable ICU nurses to carry out other tasks, 29,30,61 in our opinion, do not match with PFCC and participation in essential care should be free of obligation and left to the relatives' discretion.
Organisational conditions such as staffing ratios, time and resources, a culture endorsing family participation, visitation policies, and hospital policies should be analysed and, where possible, addressed before implementing family participation in essential care.
Most studies were conducted in Australia (n ¼ 9), the USA (n ¼ 9), and Europe (n ¼ 8), in which western norms and values will have played a role.In the Saudi study, local healthcare providers supported family involvement during routine care more than did expatriate healthcare providers.The authors attributed this to a better understanding of the needs of relatives related to sharing the same culture, norms, and values. 25Some details on ethnic background of patients and/or relatives were provided in seven studies, 8,26,32,36,37,45,49 though none of these authors addressed possible cultural influences.Olding et al. established a lack of attention to ways in which gender, ethnicity, age, and socioeconomic status may influence practices and preferences around patient or family involvement as well. 9CU care has gone through some substantial developments in the past decades, in terms of patient acuity, ICU treatment, visiting policies, and family engagement opportunities.Eleven studies were published before 2011 (four before 2006), and changes in ICU care may influence the interpretation of results; however, in terms of needs, perceptions, preferences, and capacities regarding family participation in essential care, older studies have provided valuable content.

Limitations
The quality of most included studies was moderate.Therefore, the interpretation of the results needs cautious interpretation.
The use of different study designs, populations, and perspectives made synthesis of data impossible.

Conclusion
Knowledge on the patient's needs and perceptions regarding family participation in essential care is scarce.For relatives, the opportunity to actively participate in ICU care met their need to help the patient and feel useful.Further, family participation potentially reduces stress and the chance of developing PICS-F after discharge.Generally, most relatives and ICU healthcare providers favoured family participation in essential care, with variation in favourable care activities.Most relatives prefer to be invited and supported, individualised to their situation.Education and training of both relatives and ICU healthcare providers are necessary, to address safety and quality of care concerns, though most studies lack further specification.These themes should be addressed in the development of an intervention that enables family participation in essential care.

Table 1
Characteristics of quantitative and mixed-methods studies (n ¼ 17).
Abbreviations: CCU, critical care unit; ICU, intensive care unit, FSM, facilitated sense making;* Study divided into a quantitative and qualitative part.B.M. Dijkstra et al. / Australian Critical Care 36 (2023) 401e419

Table 3
Needs, perceptions, preferences, and capacities with regard to family participation in essential care from the patient's perspective.

Table 4
Needs, perceptions, preferences, and capacities with regard to family participation in essential care from the relatives' perspective.
FP should occur at a level/frequency best suited to the relatives (continued on next page) B.M. Dijkstra et al. / Australian Critical Care 36 (2023) 401e419

Table 5
Needs, perceptions, preferences, and capacities with regard to family participation in essential care from the ICU healthcare providers' perspective.

Table 6
Possible essential care activities from the patient's, relatives', and ICU healthcare providers' perspective a .