Families of patients in ICU: A Scoping review of their needs and satisfaction with care

Abstract Aim To describe published literature on the needs and experiences of family members of adults admitted to intensive care and interventions to improve family satisfaction and psychological well‐being and health. Design Scoping review. Methods Several selective databases were searched. English‐language articles were retrieved, and data extracted on study design, sample size, sample characteristics and outcomes measured. Results From 469 references, 43 studies were identified for inclusion. Four key themes were identified: (a) Different perspectives on meeting family needs; (b) Family satisfaction with care in intensive care; (c) Factors having an impact on family health and well‐being and their capacity to cope; and (d) Psychosocial interventions. Unmet informational and assurance needs have an impact on family satisfaction and mental health. Structured written and oral information shows some effect in improving satisfaction and reducing psychological burden. Future research might include family in the design of interventions, provide details of the implementation process and have clearly identified outcomes.

& Clerehan, 2013). Involving the patient's family in the ICU stage of care is essential to enable healthcare providers to fully deliver person-centred care. Often family members who know the patient best are not considered as part of the care team (Paul & Finney, 2015).
Admission to ICU, whether planned or unplanned, however means that family members may suddenly be faced with decisionmaking and uncertainty about their relatives' acute condition and prognosis (Paul & Rattray, 2008). Research suggests they are frequently overwhelmed by feelings of anxiety and worry due to fear of losing their loved one, deterioration of the family structure, concerns about the future, coupled with the stressful technological ICU environment (Bijttebeir, Vanoost, Delva, Ferdinande, & Frans, 2001;Delva et al., 2002). Up to 50% of relatives experience emotional distress or anxiety for up to two years after hospital discharge which influences their quality of life and lifestyle (Paul & Rattray, 2008).
For these reasons, ICU care and quality measurement should include the families' perspective of whether their needs were met or not, satisfaction with the care process and outcome and evaluation of interventions to improve their psychological health and well-being (Flaatten, 2012). Current literature primarily focuses on healthcare professionals' knowledge and understanding of family needs. It provides little insight from the perspective of the family as to what their experiences are, how they perceive the care delivered and the impact of having a loved one in ICU. There is limited research describing family experiences whilst in ICU and structured interventions that might support them during the patient's critical illness.
The aim of this scoping review is to describe published literature on the needs and experiences of family members of adults admitted to intensive care and interventions to improve family satisfaction and psychological well-being and health.

| ME THOD
The method adopted for this review was informed by Arskey and O'Malley (2005) scoping review framework. Scoping reviews are undertaken to examine the extent and nature of research activity in a particular field, to summarize and disseminate research findings and identify gaps in the literature (Arksey & O'Malley, 2005). The suggested steps in a scoping review are to: (a) identify the research questions; (b) identify relevant studies; (c) study selection; (d) chart the data; and (e) collate, summarize and report the results (Arksey & O'Malley, 2005). Scoping reviews do not address issues of quality appraisal but rather they have the potential to produce a large number of studies with different study designs and methodologies.

| Research questions
The research questions posed before the literature search started were as follows: 1. What is currently known about family needs and family satisfaction with care? 2. What were the psychological symptoms experienced by family members in the ICU and the interventions available aimed at reducing those symptoms?

| Identifying relevant studies and study selection
The search strategy involved searching the following electronic databases: Medline, Cinahl, Embase, Psycho Info, Science Direct and Cochrane library of systematic reviews and Google scholar. The search terms used included the following: family, intensive care, satisfaction, needs, interventions, anxiety and uncertainty. The search covered the period 1979-2017 as the first seminal study in this area was published in 1979. To be included in this review, published studies or prior literature reviews had to include relatives of adult critically ill patients admitted to the intensive care unit. Only published papers published or translated into English were included.

| Charting the data
The article selection process is summarized in Figure 1. Consistent with the approach proposed by Arksey and O'Malley, (2005), the findings from each paper selected were organized and key themes developed pertinent to the scoping aim.
A full list of articles were obtained and screened for duplicates by the lead author. Abstracts were examined to identify publications that met the inclusion criteria for this scoping review and reviewed by lead author. Reference lists of relevant articles and eligible primary research studies or reviews were checked by hand to identify articles not captured by electronic searches.

| Collating, summarizing and reporting results
To enable a logical and descriptive summary of the results, data were extracted using the following key headings: authors(s), year of publication and title of publication; country of origin; study design; sample size; sample characteristics; intervention type and outcome.

| Ethics
Research Ethics Committee approval was deemed not required as this was a scoping review.

| RE SULTS
In total, 468 published papers were retrieved. Removing duplicates and screening abstracts and full texts resulted in the inclusion of Four key themes were identified from the scoping review: (a) Different perspectives on meeting family need; (b) Family satisfaction with care in ICU (c) Factors having an impact on family wellbeing and their capacity to cope; and (d) Psychosocial interventions.

| Theme 1 different perspectives on meeting family need
Under Theme 1, two key areas related to meeting family needs were identified, namely family member's perceptions of their needs and the healthcare team's perceptions of family needs.
Family needs data were obtained during the acute phase of critical illness (first 24-72 hr). The most important family needs identified were for information and assurance, followed by proximity, comfort and support, respectively. A recent literature review concluded that information and assurance appeared to be the greatest universal needs of family members of critically ill patients (Al Mustair et al., 2013;Verhaeghe et al., 2005). Families want timely, clear and understandable information about their relative's medical condition, but without leaving room for unrealistic hope.
There was generally consistency across studies in how the importance of these needs is ranked, although some variations do occur (Auerbach et al., 2005;Lee & Lau, 2003), which were attributed to differences in patient's severity of illness, cultural expectations, differences in ICU practices and healthcare systems (Lee & Lau, 2003;Verhaeghe et al., 2005). Age, gender, relationship to the patient, length of patient stay in the ICU and patient diagnosis were not found to be correlated with family members' ranking of needs (Omari, 2009;Verhaeghe et al., 2005).
The qualitative studies of family member's perceptions of need provide a deeper understanding of family needs whilst in the ICU. All qualitative data describe that family members feel the need to create an alliance with healthcare staff and that this had a positive impact on F I G U R E 1 Article selection process for scoping review  -The need to feel trust in the healthcare providers' ability -The need for ICU and other hospital resources, -The need to be prepared for the consequences of critical illness and "patients" needs -Reactions in relation to significant others TA B L E 1 (Continued) their ability to handle the situation they are being faced with (Bond et al., 2003;Fry & Warren, 2007;Keenan & Joseph, 2010). Families who were confident and trusting in healthcare staff's ability to care for their relative felt more able to leave at night and take care of both themselves and their other family members (Fry & Warren, 2007).
Those who perceived a lack of trust or engagement with healthcare staff describe difficulty in coping, lack of confidence, hesitancy to ask questions and dissatisfaction with care provided (Fry & Warren, 2007). Bond et al. (2003) described that inclusion of family members by the ICU team not only increased their understanding of the gravity of the patient's situation but helped prepare them for their potential caregivers role on discharge from hospital.  (Takman & Severinsson, 2006). Healthcare staff ranked the need for information and assurance as the top two important needs in all

| Healthcare teams perceptions of family needs
studies. Yet, despite this, both needs were the most frequently cited by family members as being unmet by healthcare staff (Hinkle et al., 2009;Leung et al., 2000;Omari, 2009). Unmet needs were reported to occur because ICU nurses and doctors do not perceive family needs accurately, undervalue their role and/or fail to sufficiently support the family (Bijttebeir et al., 2001;Hinkle et al., 2009;Leung et al., 2000). The patient's illness severity may also mean that the time available for communication with healthcare staff is limited and the ability to engage in discussion is compromised by the patient's clinical condition (Bijttebeir et al., 2001). Interestingly, age, gender, academic qualifications and working experience did not predict the healthcare providers' ranking of needs of the family of the critically ill patient (Takman & Severinsson, 2006).

| Theme 2 Family satisfaction with care in ICU
Seven studies, four of which were large multicentre studies, investigated family satisfaction with care and decision-making in the ICU.
Three studies used quantitative methods (Heyland, Rocker, & Dodek, 2002;Hunziker et al., 2012;Hwang et al., 2014) and four were mixed methods studies (Clark, Milner, Beck, & Mason, 2016;Hendrich et al., 2011;Karlsson, Tisell, Engrstom, & Andershed, 2011;Schwarzkopf et al., 2013). No qualitative studies of family satisfaction with care in ICU were found ( Table 2) Research study findings suggest that families of the critically ill are highly satisfied with the care their relative receives, especially with aspects of care about skill and competence of staff and the respect given to the patient (Clark et al., 2016;Hendrich et al., 2011;Heyland et al., 2002;Hunziker et al., 2012;Hwang et al., 2014;Schwarzkopf et al., 2013). Families were less satisfied with emotional support, the provision of understandable, consistent information and coordination of care (Clark et al., 2016;Hendrich et al., 2011;Heyland et al., 2002;Hunziker et al., 2012;Hwang et al., 2014;Schwarzkopf et al., 2013). Families felt more satisfied when clear, honest information was delivered to them in understandable language as this enables them to actively participate in the decisionmaking process (Heyland et al., 2002;Hunziker et al., 2012;Hwang et al., 2014). One study by Heyland et al. (2002) found completeness of information was the single most important factor accounting for the variability in overall satisfaction. Families who rated the completeness of information highly were much more likely to be completely satisfied with their ICU experience. In another study, families were less satisfied not by the delivery of information received but by the lack of information received from medical staff (Hwang et al., 2014). When family satisfaction with care was measured using the CCFSS, overall satisfaction with care was high, however, similar to Hwang et al., (2014), dissatisfaction among some family members related to the lack of availability of medical staff for regular meetings (Karlsson et al., 2011).

| Theme 3 Factors having an impact on family well-being and capacity to cope
Two key factors were identified in relation to the factors impacting on family well-being and capacity to cope, namely anxiety and uncertainty.
Levels of anxiety in family members were mainly measured 24-72 hr after the patient's admission to ICU. The prevalence of anxiety symptoms in these studies ranged from 40%-73% (Pochard et al., 2005). Risk factors associated with an increase in symptoms of anxi- lower educational status, poor sleep pattern, fatigue, lack of regular meetings with medical staff and failing to meet family needs (Day et al., 2013;Delva et al., 2002;Paparringopolous et al., 2006;Pochard et al., 2001Pochard et al., , 2005. Whilst symptoms may reduce over time, Paul and Rattray, (2008) in a recent review of the literature highlighted that moderate to high levels of anxiety are present for up to 2 years after hospital discharge in relatives providing care after ICU.

| Uncertainty
Five qualitative mainly single-centre studies explored the uncertainty that families face when a relative is admitted to ICU and how this contributes to feelings of anxiety and inability to cope with the magnitude of the situation (Agard & Harder, 2007;Burr 1998;Iverson et al., 2014;Jamerson et al., 1996;Johansson, Hildingh, & Fridlund, 2005) (Table 3). Families describe their ongoing uncertainty about whether their family member will survive or suffer permanent disability, and having the daily fear of complications arising (Johansson et al., 2005). The need to seek out information on the patient's condition and prognosis was a consistent theme in all the studies. Families felt they should always be at the bedside; they searched for cues from healthcare staff that indicated an improvement or deterioration in the patient's condition (Agard & Harder, 2007;Burr, 1998).
When these cues were absent, symptoms of anxiety manifest due to the uncertainty of the situation and they sought reassurance from staff that their relative was in safe hands. It was the "not knowing" that was the worst part of their entire ICU experience which often lead to misunderstandings and profound feelings of uncertainty, anxiety and distress until enough information was given or obtained (Agard & Harder, 2007;Burr, 1998;Iverson et al., 2014). In one study, Iverson et al. (2014) reported the role of surrogate decision maker amplified family members' anxiety at an already challenging time; they were afraid that they were making the "wrong" decision on behalf of their loved one.
Overall, a diverse range of interventions were used in these studies with the aim of improving the number of family needs met, improving satisfaction and psychological well-being. Azoulay et al. (2002) distributed a family information leaflet to supplement standardized family meetings to assess whether it improved their understanding of diagnosis and proposed interventions. The leaflet improved comprehension of diagnosis and treatment but not of prognosis. The authors attributed this to the focus of the leaflet being on diagnosis and treatment and that understanding the prognosis is difficult for families. Satisfaction with care did not significantly differ between the two groups. However, although not statistically significant they reported the family information leaflet did improve satisfaction among those family members with good comprehension. Yousefi et al. (2012) examined whether family satisfaction was improved by allocating families with a dedicated ICU support nurse. The intervention was based on "family needs inventory" where the ICU nurses role was to provide accurate explanations and information to families about the patient and their critical illness. Information and explanations were given about the ICU environment, equipment and personnel as well as treatment, diagnosis and prognosis. Meetings with the physician and allied health professionals were also facilitated. Satisfaction in the intervention group was significantly increased postintervention. Lautrette et al. (2007) introduced use of a bereavement brochure along with a proactive family conference for relatives of patients in ICU with high likelihood of mortality. They found significantly fewer symptoms of post-traumatic stress disorder (PTSD), anxiety and depression after 90 days.
In contrast, Jones et al. (2004) failed to show the provision of general written information around recovery after ICU delivered by nurses in 3 ICUs reduced anxiety, depression and PTSD symptoms at eight weeks and six months after ICU discharge. Some relatives remained anxious, and they met criteria for PTSD.
Other studies have looked at the effect of relatives assisting with the provision of care to the patient (Appleyard et al., 2000;Chien et al., 2006;Mitchell et al., 2009). Results from quasi-experimental studies suggest better family satisfaction and reduced emotional distress postintervention, compared with the usual care group (Appleyard et al., 2000;Chien et al., 2006;Mitchell et al., 2009).
For example, Chien et al. (2006) found that performing needs-based training on the patient's family needs assessed on admission to ICU, decreased anxiety and increased their satisfaction. The intervention itself was labour intensive, and further research is required to identify which specific aspects of the programme were effective.
Further, Appleyard et al. (2000) reported greater family satisfaction about comfort needs following the introduction of a volunteer programme in the ICU but no differences were found for the other CCFNI factors, including information, assurance, proximity and support. Notably, the volunteers reported the nurses became more communicative and more concerned about families' needs following the introduction of the intervention. In the third study, Mitchell et al. (2009) reported that encouraging patient's family members to assist in providing care to their relatives significantly improved respect, collaboration, support and overall satisfaction. This study, however, only included the relatives of long-term ICU patients with a length of stay greater than 11 days, thereby limiting the results to this group.

| D ISCUSS I ON
To the best of our knowledge, this is the first scoping review to describe published literature on the needs and experiences of family members of adult critically ill patients and interventions to improve family satisfaction and psychological health and well-being. Forty research studies and three review articles were included in the review.
Family needs were investigated primarily through use of the CCFNI which highlights the most pressing family needs as being for information and reassurance followed by proximity, comfort and support, respectively. Families want honest and up-to-date information delivered daily in understandable terms about their relative's progress, without leaving room for unrealistic hope (Auerbach et al., 2005). They also want to be contacted anytime of the day or night if their relative's clinical condition changes and to be reassured they are receiving the best possible care (Omari, 2009). From their experiences, families felt there was a need to develop a trusting and mutually respectful relationship with healthcare staff and that this helped them adjust to the situation they were faced with (Bond et al., 2003;Fry & Warren, 2007;Keenan & Joseph, 2010).
Fulfilling family needs is important as unmet needs leave family members feeling uninformed, dissatisfied and disenfranchised from clinical decision-making and with the day-to-day care of their relative (Wall, Curtis, Cooke, & Engelberg, 2007). The ability to meet or satisfy family needs is one of the main challenges that healthcare staff encounter in the ICU. Even if families' needs are known to ICU staff, studies have indicated that these needs are not always met (Hinkle et al., 2009;Leung et al., 2000;Omari, 2009).
To improve the quality of care provided to families assessing families' satisfaction with the patient care delivered, particularly in ICU, is important for several reasons. Firstly, healthcare providers need to develop open collaborative and supportive relationships with family members to enable them to cope with their distress and speak for the patient. Secondly, the collection of objective data on family satisfaction is desirable to assess how well healthcare providers are doing in this area. Data on family satisfaction are measured as a surrogate marker of the quality of their care (Heyland & Tranmer 2001).
Key areas for improvement identified were including the family as part of the ICU team, increasing open communication and assessing and potentially revisiting their level of understanding of the information they have been given (Clark et al., 2016;Hendrich et al., 2011;Heyland et al., 2002;Hunziker et al., 2012;Hwang et al., 2014;Schwarzkopf et al., 2013). Nurses who are in constant close contact with families are in an ideal position to ensure that family information and assurance needs are met. However, according to research, some nurses lack confidence in providing information, often being afraid of not giving the correct information or not providing adequate answers (Engstrom & Soderberg, 2007;Soderstrom, Saveman, Hagberg, & Benzein, 2003;Stayt, 2007). This is thought to be the case because nurses believe they are educationally underprepared and not sufficiently qualified to give the level of information required (Krimshtein et al., 2011;Stayt, 2007). Medical staff on the other hand have difficulty meeting with families and providing regular information delivered in a way families understand (Heyland et al., 2002;Hunziker et al., 2012;Hwang et al., 2014). Poor communication skills, insufficient training, delivering patient rather than family-centred care and a lack of time have been attributed to this (Azoulay et al., 2000;Bijttebeir et al., 2001;Moreau et al., 2004).
Several studies highlighted additional factors that have an impact on family needs being met and their capacity to cope. Symptoms of anxiety are elevated at the onset of critical illness, and the uncertainty of their family members condition exacerbate these symptoms (Pochard et al., 2005). From clinical experience and research, high levels of anxiety and uncertainty result in family members overestimating or underestimating the risks and/or benefits of clinical treatments, impairs comprehension and decision-making capabilities (Azoulay et al., 2000;Pochard et al., 2001). Anxiety therefore has important implications for family members who participate regularly in decisions about the care of their relative. Providing timely information, and preparing families for transitions in the delivery of care, may minimize the uncertainty and anxiety they experience (Azoulay et al., 2000).
Identifying interventions for supporting family members of the critically ill during the acute phase of their illness is necessary because if their relative survives, they are likely to care for them during a prolonged and often difficult recovery period (Pochard et al., 2005). The components of the interventions reviewed included a range of tools or strategies, for example family information booklet, bereavement brochure, structured meetings and dedicated nurse support (Appleyard et al., 2000;Azoulay et al., 2002;Chien et al., 2006;Jones et al., 2004;Lautrette et al., 2007;Mitchell et al., 2009;Yousefi et al., 2012).
From the intervention studies reviewed, providing a combination of targeted written and oral information delivered by nursing and medical staff caring for the patient significantly increased satisfaction and reduced anxiety with this reduction being sustained over time (Chien et al., 2006;Lautrette et al., 2007;Yousefi et al., 2012 (Appleyard et al., 2000;Azoulay et al., 2002;Jones et al., 2004;Mitchell et al., 2009).
Providing high-quality information in a variety of ways ensuring that family members understand the nature of their relative's condition, including diagnosis, prognosis and treatment risks and benefits, is crucial for family members to cope with their role as substitute decision makers (Azoulay et al., 2000Bond et al., 2003). Azoulay, Kentish-Barnes, and Nelson (2016) suggest that discussions with families open with the question "What is your understanding of what the clinical team expects to happen?" or "What has the team told you about what to expect?" If the answer differs from that of the medical staff, then this is the best place to start to identify the source of the discordance. Intensive care units that are able to support interventions based on meeting family information needs, in addition to reducing psychological burden and increasing satisfaction, will enable each family to provide more support to their relative in the ICU.

| Limitations of the review
Only English-language articles were considered for inclusion in this

| Future research
There is a need for further empirical research to increase understanding of family needs and their perspective of whether their needs were met or not and the factors that militate against this.
Differences in perceptions of need should be identified and exam-

| IMPLI C ATI ON S FOR PR AC TI CE
• Family members' need for information and assurance is perceived as being the most important need when their relative is admitted to the ICU. One major clinical implication of these results is that healthcare staff's ability to meet or satisfy these needs is not always achieved.
• Family members of patients who are admitted to ICU experience increased psychological burden, yet few studies were found on the effectiveness of interventions to improve their health and well-being.
• Regular structured family meetings using targeted written and oral information are suggested to ensure families receive the informational support required. More research is needed in this area to add to the evidence base on the effectiveness of interventions to support family members in ICU

| CON CLUS ION
In conclusion, this scoping review identified four key themes that emerged from the literature. A key finding from this review is that studies of family need have received most attention and consistently identified the need for more information and reassurance. However, families' perceived needs were not always met by healthcare staff and this had a negative impact on family satisfaction and their psychological health and well-being. Whilst there is some evidence that interventions based on the provision of appropriate written and oral information in ICU can effectively reduce anxiety and improve satisfaction, more empirical research is needed in this area.

ACK N OWLED G EM ENT
None.

CO N FLI C T O F I NTE R E S T
No conflict of interest.