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SYSTEMATIC REVIEW

The effectiveness of interventions to meet family needs of critically ill patients in an adult intensive care unit

a systematic review update

Kynoch, Kate; Chang, Anne; Coyer, Fiona; McArdle, Annie

Author Information
JBI Database of Systematic Reviews and Implementation Reports: March 2016 - Volume 14 - Issue 3 - p 181-234
doi: 10.11124/JBISRIR-2016-2477
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Abstract

Background

The specialty of intensive care focuses on patients with a variety of life-threatening illnesses or events1 and as a result, the ICU is often a very frightening environment for both the patient and the family, resulting in feelings of stress, fear, uncertainty, depression and even post-traumatic stress disorder. Indeed, some family members will have long-lasting effects that can have an impact on the critically ill patient's recovery.2 Nurses and other healthcare professionals working within this technologically oriented environment are trained to respond to the changing physiological needs of patients.3 However, it is increasingly recognized that nursing is most effective when directed toward the meeting of specifically identified human needs, rather than concentrating primarily on the patients’ medical diagnoses.4 Therefore, understanding and effectively addressing the needs of family members is a necessary step to providing appropriate “family-orientated care”.5

In a 1979 study, Molter6 developed the Critical Care Family Needs Inventory (CCFNI) that consisted of 45 needs that family members could rate on four-point Likert scales. The purpose underpinning the development of this tool was to ascertain the degree of importance attributed to specific needs by family members of critically ill patients.7 These needs identified by families of patients in the ICU have been broadly categorized into five distinct groups: assurance, proximity, information, support and comfort.8 The identified family need of assurance relates to a desire by the family to maintain or redefine hope about the patient's outcome.8 The need for proximity reflects a desire by the family to link and maintain familial relationships.8 The need for information reflects the family's goal of understanding the patient's condition.8 The need for support reflects the availability of support resources including the need for expert help, assistance or aid, and the final need of comfort reflects the family's desire to be physically comfortable to reduce distress.8 Over the years, the CCFNI has been used in many studies across a continuum of countries.5,9–15

The current evidence suggests that information about the patient's clinical condition is the greatest universal need, regardless of the relatives’ educational background or culture.16–19 During the ICU admission period, communication appears to influence relatives’ perceptions of whether their needs are met.2 Often patients in intensive care are too ill to participate in communication and decision making, resulting in their families taking on an important role in discussions and decisions regarding their care.17

There have been several studies published that highlight the emotional needs of family members with a relative in the ICU.9,19,20 Studies have generally investigated the effectiveness of support interventions to meet the emotional needs of families of patients in the ICU. The stress experienced by family members during this time can be greater than that of the patient. Hope, reassurance and being able to remain in the vicinity of the patient are key to the family members’ wellbeing.17 For some family members, it is important to know that the patient is receiving the best possible care and is as comfortable as possible.19 Some families have reported that the strict visiting hours in some units are very much an obstacle in allowing them to be with their loved one,20 and other studies have shown that families need to see their critically ill relative often, so flexibility with visiting times is crucial.21

To date, the majority of research in this area has focused on identifying relatives’ needs in the ICU, their satisfaction with the care and support they receive, how their needs are being met and interventions that may support them during this difficult time. A number of studies have identified factors related to relatives of critically ill patients in the ICU that can affect their psychological wellbeing, including uncertainty about the patient's prognosis and technology.19,22–24 In addition, several literature reviews regarding the impact of critical illness on family members2 and on the needs and experiences of family have been published.19,25 These reviews provide a broad overview of what is currently known about the needs and experiences of family members of patients admitted to an ICU, but not an in-depth analysis and synthesis of the findings. For a holistic approach to care to be realized, it is essential that the critical care nurse is able to identify the specific needs of family members and demonstrate appropriate intervention techniques for those in need of support.26

A literature review conducted by Paul and Rattray,2 examining the short- and long-term impact of critical illness on relatives, identified several gaps in the literature concerning families of critically ill patients. They suggested that although it is recognized that relatives have specific needs, it is not clear whether these needs are always met and whether further support is required, both during and after the intensive care admission. The studies summarized for this literature review mainly identified relatives’ immediate needs using the CCFNI. There were few included studies that investigated interventions to address relatives’ needs and the short- and long-term effects of critical illness on relatives.2

In 2007, the American College of Critical Care Medicine produced clinical practice guidelines for the support of family in the ICU.17 Their recommendations included shared decision making, regular family conferences to improve communication, cultural and spiritual support, flexible visiting hours and family support from ICU staff.17 However, these published guidelines also identified several weaknesses during the development process including the lack of consultation with patients and families and a lack of high-level evidence for the support of family in the ICU. These limitations were again highlighted by McKinley and Elliott3 when they evaluated the guidelines for their applicability and implications for Australian ICUs.

The initial systematic review of the literature on this topic27 identified a small number of experimental studies that evaluated the effectiveness of providing information to families including the distribution of pamphlets, structured meetings, tailored information and planned telephone calls. The results from these studies were shown to increase relatives’ satisfaction, reduce anxiety and improve comprehension of information.5,28–30 The realization that ICU relatives may require more information than is sometimes provided has led to the development of interventions such as family information leaflets (FILs)5,28 and information websites for ICU patients and relatives to empower families.31 Since the completion of this initial review, more studies in this area have been conducted. For example, a study by Shaw et al.32 evaluated the effectiveness of a training program for ICU caregivers in communicating with the families of patients in the ICU. The results of the study showed that family satisfaction with their information needs significantly increased with the intervention, as well as staff confidence, in communicating with the families.32 Similarly, other studies have explored the intervention of an informational facilitator or family support nurse (FSN) who provides personalized information and support to families and loved ones of patients in intensive care.13,15,33 A scoping search was also undertaken that confirmed no similar reviews or updates were conducted or underway on this topic.

As there were a number of further studies undertaken since the initial review was published in 2011, it was determined that an update was required to ensure that new study findings are incorporated with the data of the previous review. This process will ensure that the healthcare organizations, clinicians, researchers and policy makers are provided with the most up-to-date evidence to effectively meet the needs of families with a relative admitted to an adult ICU. The objectives, inclusion criteria and methods of analysis for this review were specified in advance and documented in a previously published protocol.34

Objectives

The objective of this systematic review was to identify the most effective interventions to meet family needs of critically ill patients admitted to an adult ICU. The needs of families of ICU patients have previously been categorized into five distinct areas: support, assurance, proximity, information and comfort.8 These categories have been utilized to report the findings of studies included in this updated review, which will include the findings of the previous review to provide a reflective and profound body of evidence.

Inclusion criteria

Types of participants

The review considered any studies that included family members (including children) of adult patients admitted to an ICU as primary participants. Intensive care unit patients with any clinical condition, length of stay (LOS) or outcome were included. Some of the studies also included critical care nurses as participants. This review excluded studies of family members of patients in pediatric or neonatal ICUs.

Types of intervention

This review considered studies for inclusion that evaluated the following interventions that have been grouped under the family needs categories of support, assurance, proximity, information and comfort:

Support

  • Support groups (including social work and psychological support)
  • Family support nurse
  • Training in coping strategies and stress reduction techniques
  • Clinician training
  • Journal/diary writing

Assurance

  • Face-to-face meetings including routine patient care conferences
  • Family participation in ward rounds

Proximity

  • Open or patient-controlled visiting hours

Information

  • Education of nursing staff
  • Information/education sessions for family
  • Documented communication pathways
  • Handouts or brochures
  • The use of technology, for example television, DVD (Digital Versatile Disc), phone, SMS (Short Message Service) or a combination of these

Comfort

  • Early family assessment
  • Development of family care plans and decisional aids
  • Physical environment (e.g. waiting areas)

Types of studies

This systematic review considered both experimental and epidemiological study designs that evaluated the effectiveness of interventions to meet the needs of families of critically ill patients admitted to an adult ICU. These included randomized controlled trials (RCTs), quasi-experimental, before and after studies and prospective studies to identify effective interventions for meeting family needs. Studies undertaken in any country were retrieved; however, because of limited resources, only those studies reported in English were included in this review.

Outcomes

This review considered studies that include the following outcome measures:

  • Coping
  • Anxiety
  • Depression
  • Stress levels
  • Knowledge/information comprehension
  • Reassurance/support
  • Satisfaction
  • Uncertainty

Only studies that used a validated tool to assess the effectiveness of their intervention were included. Examples of validated tools include the CCFNI,6 Hospital Anxiety and Depression Scale,35 Acute Physiology and Chronic Health Evaluation II36 and Post-traumatic Stress Symptoms Scale.37 A number of other tools to measure satisfaction, hope, knowledge, comprehension and social support developed by individual study researchers were also used.28,30,38–43

Search strategy

The search strategy (Appendix I) aimed to find both published and unpublished studies, initially from 1980 until June 2010 and for the update from June 2010 to June 2014. The initial broad timeframe from 1980 was chosen to ensure that all relevant studies on this topic were included in the systematic review. The search was limited to reports in English. A three-step search strategy was utilized in this review. An initial limited search of MEDLINE and CINAHL was undertaken followed by an analysis of the text words contained in the title and abstract, and the index terms used to describe the article. A second more comprehensive search using all identified keywords and index terms was then carried out. Third, the reference lists of all identified studies for possible inclusion were searched for additional articles that met the inclusion criteria. The databases to be searched included:

  • MEDLINE
  • PsychINFO
  • CINAHL
  • Health Source
  • PsychArticles
  • EMBASE
  • Web of Science (formally known as Web of Knowledge)
  • Cochrane Library (including DARE)
  • PubMed

The search for unpublished studies, including gray literature, included:

  • Dissertation abstracts
  • MEDNAR
  • Conference Proceedings

The initial keywords used for searching the databases are listed below. A full list of search terms is provided in Appendix I.

  • Mesh headingsIntensive care or critical careFamilyInformation needs
  • KeywordsICU or intensive care or critical care or ITUFamily or relative or family member or loved one or visitor or carerInformation needs or need or satisfaction or support or reassurance

Table 1 lists the number of articles after searching the listed databases.

Table 1
Table 1:
Results from searches of databases

Method of the review

Retrieved records were assessed for congruence to the review's inclusion criteria by two independent reviewers. Any quantitative article identified for possible inclusion by title and abstract or unclear because of the absence of an abstract was retrieved and the full text of each was reviewed by the two reviewers against the inclusion/exclusion criteria to determine if the article would be included. The methodological validity of the selected studies was assessed using the standardized critical appraisal instruments from the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI) (Appendix II). Any disagreements that arose between the reviewers were resolved through discussion, or with a third reviewer.

Data extraction

The quantitative data was extracted from articles included in the review using the standardized data extraction tool from JBI-MAStARI (Appendix III). The extracted data included specific details about the interventions, populations, study methods and outcomes of significance to the review question and specific objectives.

Data synthesis

Owing to the significant variability in study methodology, interventions and outcomes, it was not possible to create a statistical meta-analysis. Results, therefore, are presented in narrative and tabular form.

Results

Description of studies

There were 14 published studies20,28–30,38–47 and one unpublished dissertation48 included in the initial systematic review.

The updated search in 2014 identified a total of 4483 records from all searched databases. All the citations were imported into Endnote bibliographic software, and subsequently after the exclusion of duplicates, 3417 citations remained. All 3417 records were then independently assessed by two reviewers for eligibility from title and abstract only. This found 3379 articles not to be relevant to the review. The main reason for exclusion at this point was that the title or abstract indicated the record was a qualitative study or a discussion article and not a research. Of the remaining 38 records, some were identified for possible inclusion and some were unclear because of the absence of an abstract. All 38 articles were retrieved and the full text of each reviewed by the two reviewers against the inclusion/exclusion criteria to determine if the article would be included. At this stage of the review, a further 20 articles were excluded. The majority of exclusions were attributed to the study design, for example’ the use of qualitative methods. Eighteen studies were considered relevant for inclusion in the review. The reference lists from each of these articles were handsearched for relevant articles and no further studies were identified. Thus, the overall total number of studies that met the inclusion criteria for the updated systematic review was 18. Each of these studies was then critically appraised for methodological quality by the two independent reviewers using the JBI-MAStARI (Appendix II). Fourteen studies were found to be of adequate quality with four studies excluded. Both reviewers agreed on the studies to be included and excluded in the review. Of the four excluded studies, three were unclear in relation to their methods and sample size calculations and one described the development of a family communication tool rather than testing the effectiveness of the tool. The details for study exclusion are catalogued in Appendix IV.

When combined with the 15 studies from the initial systematic review, a final total of 29 studies were included in the update. Figure 1 displays the process used to identify relevant articles for inclusion in the updated systematic review. A summary of each included study is presented in Appendix V.

Figure 1
Figure 1:
Flowchart of the search and selection process for updated systematic review (2014)

Methodological quality

There were three RCTs in the initial review28,39,40 and an additional one from the update of the systematic review.49 Quasi-experimental design accounted for 12 studies in the initial review and a further 12 studies from the updated search, totaling 24 studies. Of these 24 studies, from the initial review, nine were two- or three-group, pre-/post-test studies29,30,41,42,44–48; one was a one-way between subjects design;38 one was interrupted time series43 and one was a two-group comparative design study.20 The update identified 12 two- or three-group pre-/post-studies for inclusion.10,11,13–16,50–55 Furthermore, one observational study was also found and included during the update of the review.33 Appraisal of the methodological quality of the included studies is presented in Tables 2 and 3.

Table 2
Table 2:
Assessment of methodological quality of randomized controlled trials
Table 3
Table 3:
Assessment of methodological quality of quasi-experimental/observational studies (including unpublished dissertation)

Methodological quality of randomized experimental studies

There were four randomized experimental studies included in the review – three from the initial review and one from the updated search. Of the four RCTs, two studies truly randomized participants to the intervention or control group.28,49 The remaining two studies allocated participants to the intervention or control group on an alternate basis.39,40 In all four studies, assessors were not blinded to group allocation. All of the studies used reliable measures of outcomes and appropriate statistical analysis.

Methodological quality of quasi-experimental and observational studies

There were 24 quasi-experimental and one observational studies included in the review (including the dissertation). Twenty-three of the published studies10,11,13,14,16,20,29,30,33,38,41–47,50–55 used convenience sampling to identify and recruit study participants, whereas Yousefi et al.15 used a table of random numbers put into sealed envelopes. Twenty-four of the studies used reliable measures of outcomes and appropriate statistical analysis; however, Wysham et al.16 were unclear about some of their statistical methods.

Methodological quality of dissertation

The dissertation included in the review was a PhD thesis.48 The study utilized a quasi-experimental design with randomization of participants to either the control group or one of two intervention groups. Outcome measures and statistical analysis were appropriate for the type of research design selected.

Setting

The settings of the studies were similar in that they were all carried out in the ICU of acute care facilities. Some of the studies were carried out in multiple healthcare sites whereas some were limited to an individual unit. The study participants were generally family members of patients admitted to the ICU; however, some studies also included nurses as participants as nurses were the primary caregivers while the patient was in ICU.

Outcome measures

The outcomes measured in both the update and the initial review studies varied depending on the design of the study and the intervention being tested. Outcome measurements were predominately validated tools; however, some authors developed their own measurements to describe their results. These will be discussed in detail in the Results section. The outcomes used in both the review studies are listed according to the five aforementioned categories.

Support

  • family satisfaction
  • family comprehension of information received
  • nurses’ attitudes
  • hope
  • social support

Assurance

  • family satisfaction
  • anxiety levels of family members
  • depression
  • family comprehension of information received
  • family needs

Proximity

  • family satisfaction

Information

  • family satisfaction
  • family comprehension of information received
  • subjective stress levels including physiologic indicators of heart rate (HR) and blood pressure (BP)
  • anxiety levels of family members
  • depression
  • mood state
  • family needs
  • coping

Comfort

  • family satisfaction
  • family comprehension of information received
  • family needs

Interventions and outcome measures

Reporting of the results from the included studies is set out according to study intervention. Interventions will be broadly defined under the identified family needs of support, assurance, proximity, information and comfort.10 Results report both the previous and new studies concurrently.

Support

There were 11 included studies that investigated interventions to address the family need of support – five from the original review and an additional six from the new review. Two studies investigated the use of support groups,42,43 three studies assessed the effectiveness of a ICU staff or family-maintained progress journal or diary,47,51,55 a family support mentor program for volunteers or healthcare professional such as a nurse or social worker to support the family of ICU patients was explored by five studies13–15,33,44 and a quality improvement intervention that targeted ICU clinicians with education about palliative care in the intensive care setting was reported by Curtis et al.49 All of the studies were carried out in the critical care unit of at least one primary healthcare facility. Seven of the studies were conducted in the USA and one each in the United Kingdom, France and Iran. Two in the USA were multi-centered studies and the setting for one study included two critical care units from two countries (United Kingdom and Sweden).

Support groups

Two studies looked at supporting families in a group setting. Sabo et al.42 tested the effectiveness of a support group run by health professionals, and Steel et al.43 investigated a formal weekday clinic for relatives to have specific appointments with health professionals. In the study by Sabo et al.,42 the authors aimed to identify the relationship between attending an ICU family support group and the family's appraisal of stress, social support and hope. This study used a comparative two-group design and was conducted in three adult ICUs (medical, surgical and cardiac) of a 900-bed university-affiliated hospital in Ohio, USA. The study sample consisted of 67 (control n = 36; intervention n = 31) family members of the patients in the ICU.

Family members in the intervention group were invited to attend an ICU support group through nursing staff, group leaders or a brochure. Participants in the control group received usual care although this was not clearly defined by the study investigators. Both groups were asked to complete a study questionnaire; the control group completed the questionnaire following initial explanation and enrolment in the study and the intervention group following attendance at the ICU family support group session. No baseline data for either group was collected. The instruments used to collect data were a two-part questionnaire designed by the investigators of the study to measure the families’ perceived benefits of the support group as well as their perceived levels of stress, social support and hope and a demographic form. The instruments were reviewed by a panel of experts; however, reliability was not established prior to use. Data for the control group was collected over a three-week period. Following collection of data for the control group, the ICU family support group sessions were initiated. Data for the intervention group was collected over an eight-month period.42

The two study groups were similar in demographics. The total mean stress score was 28.11 for the control group and 28.45 for the intervention group. There was no statistically significant difference between the two groups for mean stress scores [t (65) = 0.31, P = 0.76]. In response to the question: “in what way has attending an ICU support group session influenced your feelings of stress,” 23% reported “no change”, 52% felt the group session “somewhat decreased” their stress and 9% reported “strongly decreased” feelings of stress. The total mean social support score was 39.17 and 38.03 for the control and the intervention groups, respectively. There was no significant difference in social support using an independent t test [t (65) = 1.01, P = 0.31]. In response to a question: “did attending the ICU support group give you a sense of support and understanding from others who were in similar situations,” 71% (n = 22) of intervention group respondents felt “some increased feelings of support”.42

The total mean hope score for the control group was 22.58 and 22.16 for the intervention group. There was no statistically significant difference in hope scores using an independent t test [t (65) = 0.53, P = 0.60]. In response to a question: “do you feel that attending a support group has changed your feelings of hope,” 45% (n = 14) of respondents felt an “increased sense of hope” whereas 32% (n = 10) felt “no change”. In response to benefits of the support group, the majority of participants in the intervention group (77%, n = 24) responded that they would recommend attending another ICU support group session. Overall, the findings from this study indicated that attending an ICU support session did not significantly change stress levels, feelings of hope or social support.42

Steel et al.43 offered support to families with a specific “relative's clinic”, where they investigated the impact of offering a relative's clinic on the satisfaction of the next of kin of critical care patients. The study was set in a 12-bed critical care unit in a 480-bed hospital in the east of England. The design of the study was a time-interrupted prospective trial and the intervention was applied for three months over the six-month timeframe of the study. During the first 12 weeks of the study, relatives received standard care that involved ad-hoc discussions. For the subsequent 12 weeks, a relative's clinic intervention, delivered by a doctor and the patient's nurse, was offered to family members. Family members were asked to make an appointment if they requested a relatives’ clinic. For the final six weeks, standard care was again implemented. Satisfaction was assessed four weeks following discharge from the critical care unit via a mailed survey using the validated Critical Care Family Satisfaction Survey (CCFSS) (1–5 scoring scale).43

A total of 149 family members of patients admitted to the unit participated in the study. The survey return rate was 46%. The control and the intervention groups were similar in size and demographics. Mean satisfaction for the control and the intervention group was 4.50 (SD = 0.20) and 4.55 (SD = 0.17), respectively. The difference between the two groups was not statistically significant (P = 0.35). Overall, the results of the study showed that offering a relatives’ clinic does not significantly improve the satisfaction of the next of kin in this setting.43

Family support mentor Appleyard et al.44 investigated the effectiveness of a nurse-coached volunteer program in satisfying the needs of patients’ families in the critical care environment. This study utilized a descriptive pre-/post-test design. Twelve volunteers were recruited from the volunteer department of a large academic medical center in Boston, Massachusetts, USA. The intervention used in this study, a nurse-coached volunteer program to support families, was divided into three parts. The first part was the development of a role description for the volunteers who agreed to participate and carry out the intervention being tested in the study, followed by the implementation of a three-hour nurse-coached volunteer program. The third part consisted of a mentor program wherein each volunteer was assigned to a critical care nurse whom they then spent time with observing the care of patients in the critical care unit.44

There were three different groups of respondents for this study: family members, critical care nurses and hospital volunteers. Before and after implementation of the volunteer program, family members of patients within the unit were asked to complete the CCFNI wherein they rated whether their needs were met on a scale from 1 (never met) to 5 (always met). Staff nurses were asked to complete the Nurse's Attitude Toward Visiting Survey before and six months after implementation of the program. Qualitative data was also collected from the volunteers. As the inclusion of qualitative data is beyond the scope of this systematic review, only the results from the family members and nurses will be reported.44

Fifty-eight family members completed the CCFNI, 28 before and 30 after implementation of the volunteer program. The results indicate a statistically significant difference in the CCFNI need for comfort (P < 0.05) reported by families before and after initiation of the program. There was no statistically significant difference found for all other CCFNI factors including information, assurance, proximity and support. Thirty-eight staff nurses, 20 before and 18 after implementation, completed the Nurses Attitudes Toward Visiting Survey. The results of the survey found no difference in mean scores pre- and post-implementation. However, the actual mean scores were not reported in the study. Overall, the study results revealed only statistically significant changes for family members with regard to comfort. There were no changes in the nurses’ attitudes.44

Yousefi et al.,15 Shelton et al.14, Moore et al.13 and Davidson et al.33 also investigated a family mentor program but with a healthcare professional in the role rather than a volunteer. Yousefi et al.15 examined supporting families with a dedicated support nurse. The study utilized a two-step pre-/post-study design. In an ICU in Isfahan in Iran, a specialist nurse gave information and general support to families of patients in the ICU. The support intervention was based on the “family needs inventory” and the role was responsible for conveying medical information to families and encouraging informed participation in medical decision making by improving the functioning and interaction of the ICU team and families. Sixty-four families participated and were randomly allocated into two equal groups where one group received the intervention (n = 32) and the other received usual care (n = 32). The intervention included training of the FSN who met with the family at the patient's bedside and reassured the family that the patient was receiving the best possible care. Information and explanations were given regarding the ICU environment, equipment and personnel as well as treatment, diagnosis and prognosis. Meetings with the physician and allied health professionals were also facilitated. Before the intervention was initiated (day 2 of admission) and again four days after admission, the families were asked to complete the Johnson questionnaire – a validated modified version of Molter's family needs survey.24 The findings showed no significant demographic differences between the two groups (age: P < 0.99, gender: P < 0.79 and education level: P < 0.12) and no significant difference in satisfaction before the intervention (P > 0.05). However, the mean satisfaction score for the intervention group was significantly higher (P < 0.001) after the intervention than before. The authors concluded that this type of intervention has a significant impact on family satisfaction in the ICU.15

Shelton et al.14 conducted a quasi-experimental pre-/post-pilot study examining the effects of a Family Support Co-Ordinator (FSC) in an ICU in Albany, New York, USA. The FSC acted as a liaison between the ICU staff and the families of the patients in the ICU. There were 227 participants with 113 receiving the support of a FSC and 114 receiving usual care. Data was collected over two time periods – phase 1 was for eight months before the implementation of the FSC and the intervention (phase 2) was conducted over a period of 10 months. Participants completed the Family Satisfaction ICU Survey, and the researchers calculated the patients’ LOS in the ICU and the cost of each patient's stay. Overall, there was a reduction in LOS and costs of ICU admission for patients of relatives in phase 2 of the study. These results were not statistically significant though, with the LOS being reduced to 0.37 days (P = 0.89) and the cost savings were $3164.00 per patient (P = 0.44).14

Phase 2 participants reported being significantly more satisfied than their counterparts in phase 1.14 There was an improvement in family satisfaction with ICU team members care and communication, mostly from physicians communication (P = 0.003), respiratory therapists care (P = 0.004) and social workers’ communication (P = 0.006). There was also an increase in family satisfaction with nursing care although this was not statistically significant (P = 0.05). In addition, satisfaction with the ICU team's consideration of family needs (P = 0.001) increased significantly. Other mean ratings for communication and care also increased although not significantly. These included ICU staff's explanation of tests, treatments and condition of the patient, flexibility of visiting hours and the degree to which family members felt included in decision making.16 The authors concluded that although the intervention significantly improved areas that the FSC program targeted (communication), it also increased family satisfaction with the care of their loved one.14

After the pilot study by Shelton et al.14, the role of the FSC was further explored by Moore et al.13 in three ICUs (medical, surgical and neurological) in a large teaching hospital in the USA. This study was a quasi-experimental pre-/post-design with 456 family members of the patients in the ICU participating – 226 in the pre-group and 230 in the post-group. Physicians in the ICU were also included in the study data, but this information is not reported here as it was not relevant to the outcomes of this systematic review. Similar to Shelton's FSC role,16 the FSC in the Moore's study acted as a communication liaison between the ICU team and the ICU patient's family, whereby the family's informational needs were assessed daily, medical information was interpreted, clarified and facilitated to inform decision making, as well as physician meetings and allied health referrals were expedited. Through the FSC, the ICU teams were given the family's perspectives about the patient's condition, treatment and prognosis. The FSC intervention was offered to families on day 2 or 3 of the ICU admission if it was considered by the physician that the patient would require ICU care for a period longer than five days.13

Data was collected over two sequential periods from two separate groups of family members – pre- and post-intervention. The Critical Care Family Needs Assistance Family Satisfaction Program (FSS) survey was administered on the day of the patient's discharge from ICU for family members to complete. The main surrogate decision maker was the participant. Families with the support of the FSC showed statistically significant differences between pre- and post-intervention in physician communication (P = 0.001) and care (P = 0.001), the ICU team's help with the understanding of tests, treatments and the condition of their loved one (P = 0.002), their consideration of family needs (P = 0.001), privacy (P = 0.001) and social worker assistance (P = 0.001). The authors concluded that a FSC significantly increased family satisfaction with physician care and communication and the ICU teams’ consideration of family needs in the ICU environment.13

Davidson et al.33 conducted their study in the ICU of a large trauma center in south-western USA, using the nursing theory of “facilitated sense-making” as its framework, where the principle adopted is that families of critically ill patients will compensate either positively or negatively (e.g. hope or depression) to the disruption in their lives as they process the event and cope with it. The study used a Family Support Nurse (FSN) and the participants were visited by the nurse for at least two days. The FSN was flexible with the time spent with families depending on the family's needs and willingness to engage in the program, all participants met with the FSN at least three times. This was a prospective survey design pilot study with 30 participants, 22 of which completed an adapted Critical Care Family Needs Inventory (aCCFNI) and Family Support Program evaluation questionnaire. The FSN intervention included personalized explanations of the ICU bedside environment, instructions about what to do at the bedside, facilitation of discussions with the physicians, information about hospital services and debriefing to create an awareness of feelings, concerns and enable further action in the pursuit of information about their sick relative's situation and reinforce understanding of it. In addition to this support, families were also given a “family visiting kit” consisted of personal care items, general information and instructions, a journal, non-denominational prayer and cognitive recovery tools for interaction with the patient (e.g. writing paper, pen, playing cards) and the aCCFNI to enable families to disclose unmet needs.33

Participants were asked to complete an aCCFNI and Family Support Program evaluation. The aCCFNI contained an additional item wherein families could rate on a four-point Likert scale how well the need was met by ICU staff from 1 – “never met” to 4 – “always met”. The tool used in this study also included a section for family demographics and a space for comments. Family members of 30 patients consented to participate; 22 participants completed the surveys. The authors reported that the results validated the importance of informational needs. All 45 needs were found to be of some importance to family participants. However, the study only reports the results of 10 need statements from the CCFNI. The researchers performed a weighted analysis of needs met to importance on each of these to identify unit-specific performance improvement opportunities. Table 4 provides the mean score of family's responses for these 10 need statements. The program evaluation scores revealed that families were supportive of the program. Overall, the results of this study showed all needs on the aCCFNI were important to the study participants.33

Table 4
Table 4:
Family needs scores33

Diary

Three studies investigated the effects of a family-maintained progress journal on anxiety levels of family.47,51,55 Kloos and Daly47 studied the families of patients undergoing coronary artery bypass graft surgery in a 20-bed cardiothoracic unit in Ohio, USA, by utilizing a quasi-experimental pre-/post-test design. Ninety-one family members participated in the study, 40 were randomly assigned by week to the intervention group and 51 to the control group. The control group received the usual information provided by the unit whereas the intervention group received the usual information as well as a family-maintained progress journal. The study utilized three published and tested tools to assess the effectiveness of the intervention: the State-Trait Anxiety Inventory, the Acute Physiology and Chronic Health Evaluation III (APACHE) and Mishel Uncertainty in Illness Scale.47

The results of this study by Kloos and Daly47 indicated that there was a statistically significant reduction in anxiety from pre-test to post-test for all participants. The mean anxiety score pre-test was 47.4 (SD = 6.06) and post-test (three days after relatives surgery) was 40.1 (SD = 13.25) (paired t test for dependent means t = −4.95, P < 0.001). However, there was no significant difference in pre- and post-test anxiety between the control and the intervention groups when using analysis of variance (ANOVA) (F = 0.138, P = 0.757). A multiple regression model of three variables found that trait anxiety and uncertainty in illness explained 26% of the variance in anxiety at post-test (F3.87 = 9.963, P < 0.000), with the third variable in the model, severity of illness (APACHE), not statistically significant. Overall, the study results reveal that mean anxiety levels were reduced from pre-test to post-test; however, this was not related to the use of the family-maintained progress journal.47

Jones et al.55 also looked at the effectiveness of a diary for relatives of patients in the ICU.54 This was a pilot study conducted as part of a larger randomized controlled study looking at the effect of a diary on patients in the ICU and post-traumatic stress disorder (PTSD).56 In the larger RCT, 12 European ICU centers participated; however, only two of these centers conducted the smaller pilot study examining the diary's effectiveness on ICU families. One ICU was in the United Kingdom and the other was in Sweden – both units were general adult ICUs. Intensive care unit staff diarized the course of the patients’ admission to ICU daily and the patient's next of kin were also invited to contribute. Participants in the intervention group were given the diary to read one month (maximum two months) after the patients’ discharge whereas the control group received the diary after three months. All participants completed a baseline Post-traumatic Stress Syndrome-14 (PTSS) screening tool prior to randomization and then again at three months after the patients’ discharge from the ICU.55

Thirty-six relatives were recruited and a total of 30 from the two ICUs completed the three-month follow-up survey, with 15 family members in each arm. The demographic details of each group were comparable, and the PTSS-14 showed no significant differences at the baseline screening (Mann–Whitney U test: P = 0.79). However, there was a statistically significant difference noted at 3 months post-discharge (P = 0.03). The family members who read the diary earlier (1–2 months post-discharge from the ICU) had a significant reduction in their PTSS-14 median score by 5, whereas the non-intervention group (who read the diaries after three months) increased by 5. The authors concluded that a diary for the patient and families may facilitate recollection of the ICU experience and initiate discussions between family members and the patient about their feelings and emotions, potentially reducing the symptoms of PTSS.55

Similar to Jones et al.,55 Garrouste-Orgeas et al.51 also looked at the psychological impact of the use of a diary on family members during an ICU admission. This study was set in a medical and surgical ICU in a 460-bed tertiary hospital in Paris, France. A prospective study design was used with three study periods – pre-diary use (control), diary use (intervention) and post-diary use (control) – over an 18-month period. During the intervention period, relatives were invited to contribute to a bedside diary of the patient in the ICU. Intensive care unit staff wrote in the diary on most days (but at least weekly) to document the course of the admission.51

One hundred and forty-three patients’ relatives were included in the study, with 48 in the pre-diary phase, 49 in the diary phase and 46 in the post-diary phase. Each relative completed the Hospital Anxiety and Depression Scale on the patients’ discharge and then 3 months later. Post-traumatic stress-related symptoms were measured with the Peri-traumatic Dissociative Experiences Questionnaire at three months and the Impacts of Events Scale-revised (IES-R) tool one year after discharge. The authors concluded that the diary did not have an effect on the wellbeing of family members at three months after adjustment of variables (LOS, arterial catheter and administration of corticosteroids). However, after 12 months, there was a significant difference in the IES-R scores of the intervention and control groups. Both pre- and post-diary groups scored 32.7 (SD = 12.9) and 29 (SD = 14.5), respectively, and the intervention group scored 21.6 (SD = 10.7, P = 0.003). The authors’ conclusion for the study was that the use of a diary can influence the long-term psychological impact of an ICU admission for relatives.51

Quality improvement

An unblinded cluster-randomized trial testing the effectiveness of a quality improvement program to improve end-of-life care in the ICU was conducted by Curtis et al.49 in 2008. The intervention targeted ICU clinicians with education about palliative care, identified and trained ICU clinicians as palliative care champions, addressed ICU-specific barriers to improving end-of-life care, used feedback and implemented system supports. The study was conducted in the ICUs of 12 hospitals in the USA.49

The outcomes of interest for this review is the Quality of Dying and Death (QODD) tool, which was administered to families of patients who died in an ICU over a four-year study period. The questionnaire measured a family's assessment of their loved one's death experience. The Family Satisfaction-ICU (FS-ICU) survey was also administered.49

Surveys were administered to 822 family members with 421 in the intervention group (239 in the baseline period and 182 in the follow-up period) and 401 in the control group (187 in the baseline period and 214 in the follow-up period). Demographic characteristics were similar between the two groups. There were no significant differences between the groups’ families – QODD (P = 0.33) or FS-ICU (P = 0.66). Owing to the fact that there were no improvements or differences, the authors created sub-types of patients – those who died after transition to palliative or “comfort” care and those who died while receiving full ICU support. These results showed some significant differences between the intervention and control groups, with family members of patients receiving “comfort” care scoring higher in the QODD (mean 64.3, SD = 22.6, P < 0.001) and FS-ICU (mean 76.9, SD = 19.7, P < 0.001) with moderate Cohen effect sizes (0.45 and 0.46, respectively). Overall, despite weighting and adjustments for co-variants, the findings remained unchanged and the authors concluded that the intervention might have been more effective if it targeted more direct intervention with relatives and families.49

Assurance

Four studies investigated interventions to meet the assurance needs of family with a relative admitted to a critical care unit.10,30,39,40 All four studies assessed the effectiveness of a communication intervention on family anxiety, depression, satisfaction and comprehension of information received. Two of the studies were set in multiple ICUs in France and two were set in medical ICUs in the USA.

Laurette et al.39 conducted a study that investigated the effects of a proactive end-of-life conference and brochure intervention to lessen the effects of bereavement on families. Family members of 126 patients dying in 22 ICUs in France were randomly assigned to the intervention or the customary end-of-life conference that occurred at each participating healthcare site. In the intervention group, the end-of-life family conference was held in accordance with the detailed guidelines developed by the previous studies.57,58 No baseline data was collected. Participants were interviewed by telephone 90 days after the death of their relative using the IES wherein scores range from 0, indicating no symptoms, to 75, indicating severe symptoms related to PTSD and the Hospital Anxiety and Depression Scale (HADS) in which subscale scores range from 0, indicating no distress, to 21, indicating maximum distress.39

Comparisons of continuous variables between two randomized groups were performed with the Wilcoxon rank-sum test or in the case of categorical variables with Pearson χ2 or Fisher's exact test. On day 90, the 56 participants in the intervention group who responded to the telephone interview had a significantly lower median IES score than the 52 participants in the control group [median score, 27 (interquartile range, IQR: 18–42) vs. 39 (IQR: 25–48); P = 0.02]. These results indicate that 25 family members in the intervention group (45%) were at risk of PTSD as compared with 36 (69%) in the control group. The median HADS score was also lower in the intervention group [median score, 11 (IQR: 8–18) vs. 17 (IQR: 11–25); P = 0.004]. Symptoms of both anxiety and depression were less prevalent in the intervention group: anxiety (45%) compared with the control group (67%) (P = 0.02) and depression 29% compared with 56% (control group) (P = 0.003). Only the P values were reported in the study, the results of the statistical test were not provided in the results or in table format. Overall, the results of this study indicate that providing relatives of patients who are dying in the ICU with a brochure on bereavement and using a proactive communication strategy that included longer conferences and more time for family members to talk lessened the burden of bereavement.39

A study by Medland and Ferrans30 investigated the effectiveness of a structured education program for family members of patients in an ICU. The objectives of this study were to determine if their program would increase family members’ satisfaction with the care provided, meet their needs for information and decrease disruption for the ICU nursing staff from incoming telephone calls. The study used a two-group, pre-/post-test quasi-experimental design. The sample consisted of 30 family members of patients in a medical ICU (control, n = 15; intervention, n = 15). The control group received usual care that consisted of the provision of an ICU information booklet (less detailed than the brochure developed for the study) and a report of the patient's condition as fair, serious or critical provided by the ward clerk for telephone enquiries. This report was sometimes augmented by a discussion with the patient's nurse. In contrast, the intervention group received the structured communication program consisting of three components: a discussion with a nurse approximately 24 hours after admission of the patient, an information brochure given at the time of the discussion and a daily telephone call from the nurse who was caring for the patient on that day.30

Data was collected from the participants using three measures. First, the Satisfaction with Overall Care questionnaire developed by the study investigators to assess family members’ overall satisfaction with care. The tool was validated by an expert panel and supported by Cronbach alphas of 0.97, 0.91 and 0.96 (pre-test), and 0.94, 0.83 and 0.94 (post-test) for the total instrument. The second tool used to collect data was the Assessment of Information Provided (AIP) instrument again developed by the study investigators with a good internal consistency [Cronbach alphas of 0.96 (pre-test) and 0.94 (post-test). The AIP instrument measured family members’ perceptions of the information provided by the nursing staff. The study investigators reported that the content validity of the tool was supported by the items being based on an extensive literature review of the information needs of family members of the patients in the ICU. A daily count of the number of incoming telephone calls received by the ICU from family members in each group was also recorded.30

There was no statistically significant difference in satisfaction with care found between the two family member groups [F (1, 28) = 0.81, P < 0.38]. However, in the intervention group, satisfaction with care increased significantly from baseline to post-test (difference = 17.6), as did the family members’ perception of how well their information needs were being met (difference = 11.06). Mean AIP scores for the control group were pre-test 144.80 (SD = 22.72) and post-test 148.06 (SD = 20.12). For the intervention group, mean pre-test and post-test scores were 136.86 (SD = 30.77) and 157.66 (SD = 16.16), respectively. A two-way, repeated measures ANOVA found no significant difference in AIP scores over time between the two groups [F (1, 28) = 0.01, P = 0.92]. The number of phone calls received from family members in the control group was significantly higher than the number received from family in the intervention group [t (14) = 5.88, P < 0.0001]. Overall, the results of the study did show a significant reduction of phone calls from family members in the intervention group versus the control group without compromising family members’ satisfaction of care or their need for information.30

The next study by Moreau et al.40 looked at the effectiveness of junior versus senior physicians for informing families about prognosis of intensive care patients. The study was a prospective randomized multi-center trial in 11 French ICUs. Patients (n = 220) were randomly allocated to having their family members receive information by either junior or senior physicians throughout their intensive care stay. There were a total of 185 patients included in the study, 92 in the junior physician group and 93 in the senior group. Between days 3 and 5, one family representative per patient was evaluated for comprehension of the diagnosis, prognosis, treatments for the patient, satisfaction with information and care and presence of symptoms of anxiety and depression.40

Results revealed no significant differences in baseline characteristics between the two groups. There were no significant differences found between the junior and senior physician groups with respect to satisfaction, anxiety and depression. There was no significant difference found between the two groups with respect to comprehension of diagnosis, prognosis and treatments (P = 0.47). Only the P value was reported in the study, the results of the statistical test were not provided in the results or in the tables. Overall, 93% of family representatives were satisfied with the information they received and 95% felt that their questions were always answered. Only two satisfaction parameters differed significantly between the two groups: additional time as evaluated subjectively by family members, and seeking additional explanations from their usual doctors. Some family members informed by junior physicians in comparison to senior physicians felt they had not been given enough information time and would have liked additional information time [additional time wanted: 3 (0–6.5) minutes in the junior group vs. 0 (0–5) minutes in the senior physician group, P = 0.01]. A number of family members also sought additional explanations from their usual doctor (48.9% in the junior group vs. 35.4% in the senior physician group, P = 0.004). Overall, the results of the study revealed that junior physicians performed as well as senior physicians when delivering information to patient families; however, families receiving information from junior physicians would have liked additional information time. This study suggests that families receive assurance through discussions with healthcare staff regardless of who is providing the information.40

More recently, Jacobowski et al.10 used a pilot study to explore the effects of family participation in ICU rounds on their satisfaction with the experience. The objective of this prospective pre-/post-study was to examine the effect of family attendance at planned multidisciplinary rounds in the ICU, hypothesizing that this would augment communication and simplify end-of-life planning (if appropriate). The study was conducted in a medical ICU of a large tertiary hospital in Nashville, Tennessee, USA, and families were invited to attend the daily multi-disciplinary rounds wherein, in addition to the usual professional handover, the attending physician gave a “plain language” report of the previous 24 hours and the plan for the next 24 hours. The family was then given the opportunity to ask questions from the ICU team. To prevent potentially lengthy ward rounds that this structured intervention may have caused, only two family members were invited to attend, and if questions extended longer than a few minutes, the families were given time to meet the ICU team later. Participants completed the FSS-ICU one month after the patient was discharged from the ICU. There were 116 family members in the pre-intervention (control) group and 162 in the post-intervention (intervention) group.10

Overall, the satisfaction level did not change significantly between the control and the intervention groups. For those family members whose loved ones survived their ICU illness, the satisfaction level with doctors’ communication was significantly improved after the intervention (n = 89, 60%; P = 0.004) when compared with the control group (n = 98, 38%). Also families with a relative who died in ICU reported feeling more supported with their decision-making process (n = 22, 73%; P = 0.005) than their counterparts in the control group (n = 18, 61%). There was a significant difference between the two groups regarding adequate time for questions, where the control group reported significantly higher satisfaction rates (n = 98, 40%; P = 0.02) than the intervention group (n = 89, 23%). The authors then went on to compare all possible responses to this question with the Wilcoxon rank-sum test that showed no significant difference between the groups (P = 0.19).10

Overall, the study concluded that while satisfaction did not improve with interactive family rounds, family participation in rounds potentially could improve some aspects of family satisfaction such as support during decision making and frequency of communication with clinicians.12

Proximity

Two included studies examined a specific intervention for addressing the family need of proximity. Both the studies investigated the effects of a change to the visitation policy in critical care units.41,54

Ramsey et al.41 conducted their study in a critical care unit in a medical center in Johnson City, New York, USA. The old policy consisted of 15-minute visits at specified hours five times a day: one in the morning, two in the afternoon and two in the evening. The new visiting hour policy consisted of 15-minute visits at specified hours seven times a day: two in the morning, three in the afternoon and two in the evening. Using a pre-/post-test design, 102 critical care nurses and 103 visitors to a critical care unit in a mid-south-eastern medical center were surveyed regarding a visitation policy change. Fifty-two nurses were surveyed before the visitation policy change and 50 after the change. Only 11% of the nurses participated in both the surveys. Of the visitors, 53 were surveyed before the change and 50 different visitors were surveyed after the change. The study investigators developed two separate questionnaires, one for nurses and one for visitors, which measured satisfaction with the critical care unit visiting hour policy. The questionnaire was validated by an expert panel from the study site. The nurse questionnaire consisted of 13 Likert format statements that the researchers divided into three categories: time to do patient care, amount of visiting time and keeping visitors informed. The visitor questionnaire consisted of 15 Likert format statements. The researchers divided the items into four categories: amount of visiting time, convenience of visiting hours, waiting room environment and being kept informed.41

The greatest change in response from pre- to post-survey for nurses pertained to the increase in the amount of visiting time in the new policy for families. Nurses strongly felt that the new visitation policy provided enough visiting time and that more time was not needed (46% pre-survey; 70% post-survey; P = 0.048). Only the P value was reported in the study; the results of the statistical test were not provided in the results or in the tables. In the pre-survey, 76% of nurses agreed that there should not be rigid adherence to the visitation policy compared with 83% of nurses in the post-survey; however, these results were not statistically significant. Almost all nurses felt that they kept visitors informed about the patient's condition (92% pre-survey; 98% post-survey) and individually performed this task well (100% both pre- and post-survey). Both of these results were not statistically significant.41

Most visitors reported that they had enough time to visit their relative and did not feel that they were disrupting nurses who were providing care to the patient at the bedside. However, none of these findings were statistically significant following the change in the visitation policy. More visitors rated the new visitation policy convenient (73%) compared with 59% for the previous visitation policy, and this result was also not significant. Visitors responding to the post-survey expressed most concern over the waiting room environment, with the lack of silence being an issue (pre-survey 40% vs. post-survey 66%; P = 0.06) and overcrowding (pre-survey 53% vs. post-survey 72%; P = 0.05), bearing in mind that respondents to the post-survey did not experience the previous visiting hour policy. About 80% of respondents, In both the pre- and post-surveys, felt that nurses kept them informed of the patient's status. However, a greater percentage of participants in the post-survey (66%), compared with 42% in the pre-survey, wanted more information from nurses (P = 0.008). Overall, the study found that visitors and nurses were generally happy with a change in visitation policy, from 15 minutes at specified hours five times a day to 15-minute visits at specified hours seven times a day, with families satisfied with the flexibility and close proximity to the patient. However, results from visitors responding to the post-survey indicate a statistically significant decrease in satisfaction with the waiting room environment.41

Baharoon et al.54 compared the effectiveness of two different visitation policies – restricted hours and open visitation. This study was conducted in two critical care units in Saudi Arabia, where one unit had open visitation and the other had restricted hours limited to the morning and afternoon. A cross-sectional prospective design was utilized with 106 family members in the intervention group (open visitation) and 115 family members in the control group (restricted visitation). The CCFSS was utilized to measure the satisfaction between the two groups.54

The authors did not observe a significant difference between the two visitation policies. Overall satisfaction rates were comparable between open visitation (n = 106, mean 2.4, SD = 0.3) and restricted visiting (n = 115, mean 2.4, SD = 0.5). When sub-categories were examined, these also showed no trend toward either policy; mean satisfaction score for proximity was 2.3 (SD = 0.5) for open visitation and 2.4 (SD = 0.6) for restricted visiting (P = 0.24). The authors concluded that other factors may impact on the overall satisfaction of families during the ICU admission of a loved one. These may include adequate allocation of time for discussions, direct communication with clinicians and family socio-cultural characteristics.54

Information

Ten studies aimed to address the family's need for information about their relative in ICU.16,20,28,29,38,45,46,48,52,53 Although two of these studies also included additional interventions that addressed the support and proximity needs of families,38,48 the studies included in this section of the review predominately investigated interventions to inform and/or educate families regarding the care, diagnosis and prognosis of their relative in the ICU. Eight of the studies were set in the USA, one in France and one in Hong Kong. All but one study was set in the ICU of single healthcare facility.

The study by Azoulay et al.28 investigated the impact of a FIL on improving the effectiveness of information provided to families with a relative in an ICU. This study performed a prospective randomized trial in 34 French ICUs to compare comprehension of diagnosis, prognosis, treatment and satisfaction with information provided by ICU caregivers, in ICU patient family representatives who did (n = 87) or did not (n = 88) receive a FIL in addition to standard information. A FIL designed specifically for this study was delivered at the first visit of the family representative: it provided general information on the ICU and hospital, the name of the ICU physician caring for the patient, a diagram of a typical ICU room with the names of all the devices and a glossary of 12 terms commonly used in ICUs.28

Characteristics of the ICUs, patients and family representatives were similar in the two groups. Comprehension in the two groups was compared using the χ2 test or the Fisher's exact test. The FIL reduced the proportion of family members with poor comprehension of diagnosis, prognosis and treatment from 40.9 to 11.5% (P < 0.0001). Satisfaction did not significantly differ between the FIL and the control group [median score, 21 (18–26) vs. 23 (19–27); P = 0.08]. However, among family representatives with good comprehension, the FIL was associated with significantly better satisfaction [21 (18–24, quartiles) vs. 27 (24–29, quartiles); P = 0.01] in those who did not receive the information leaflet. Overall, the results indicate that ICU caregivers should consider using an FIL to improve the effectiveness of the information they impart to families.28

Another included article that looked at supporting family members in the ICU through the provision of information used a pre-/post-test two-group experimental design to investigate the effect of an education–orientation program on family members who visit their significant other in the ICU.45 A convenience sample of 40 family members of patients in the ICU from a large veterans administration medical center in Los Angeles, California, USA, were randomly assigned to either the control (n = 20) or the intervention group (n = 20). The Kerle and Bialek Subjective Stress Scale (SSS) was used to measure self-reported transitory psychological stress. This tool consisted of 25 descriptor items incorporated into two forms each consisting of 15 words. Scale values had previously been calculated for each word and respondents were required to make a single response. Several studies have been successful in differentiating stressful situations using this tool. However, the reliability and validity of the tool was not reported.45

As all participants were enrolled in the study, mean baseline HR (intervention group = 83 beats/min) and BP (intervention group = 133 mmHg) were recorded and they were asked to complete the SSS questionnaire. Baseline data for the control group was not reported in the study. The control group family member then visited the patient for five minutes and afterward the same data was collected for the post-test. Prior to visiting their loved one, the intervention group also had baseline HR and BP recorded using the same process as the control group. A pre-visit education program was then presented to the family member, in which the physical critical care environment was discussed and all alarms explained. Following this, the patient's immediate environment and progress were then discussed at length. A handout detailing hospital services was also given to the patient's family. At the completion of the education-orientation program, the family member was asked to complete the SSS and their HR and BP were recorded, and these were completed again following a visit with the patient.45

The data from the study were analyzed using paired t test and repeated measures ANOVA. Data were analyzed within groups to compute mean differences in systolic BP, HR and SSS scores. Intervention group data was then analyzed before and after the education program and before and after visiting. Data was also compared before presentation of the education program and after visiting in the ICU. There were no obvious differences between the control and the intervention groups with respect to age, education or previous experience with hospitalization. In the control group, there were no statistically significant changes in BP, HR and SSS before and after visiting their relative. For the intervention group, the mean HR decreased after the education-orientation program and further decreased after the bedside visit (t = −2.65, P = 0.016). Using an ANOVA test, there were no statistically significant changes found between relatives in both the intervention and the control groups. Although the HR of the intervention group improved following education-orientation and further improved after a family visit, these improvements were not significantly different from changes found in the control group.45

The next included study investigated the effectiveness of a needs-based education program for families with a relative admitted to a critical care unit.29 The aim of this quasi-experimental study, using a pre- and post-test design for two groups, was to examine the effect of a needs-based education program, provided within the first three days of patients’ hospitalization, on the anxiety levels and satisfaction of psychosocial needs of their families. A convenience sample was recruited over a period of three months, consisting of one primary family carer of each critically ill patient who had been admitted to an ICU in Hong Kong. Conducted by an ICU nurse specially assigned for the purpose, family carers in the intervention group (n = 34) received an individual education program based on the results of an individual family needs assessment carried out at the time of patient admission, using the CCFNI. The patients in the control group (n = 32) received the usual orientation and explanation given by the ICU nurses. The instruments used to collect pre- and post-test data from the participants were the Chinese version of the State-Trait Anxiety Inventory and the Chinese version of the Critical Care Family Needs Inventory (C-CCFNI).29

Anxiety and need satisfaction were measured in the two groups at pre- and post-test and their mean scores were compared. A total of 10 need statements in the C-CCFNI were rated to be important or very important (3 or 4 on a four-point Likert scale, with 4 being the highest score) by 20 of the 34 families in the intervention group, with a mean score of 3.0 or above. The mean satisfaction scores of these needs ranged from 1.15 to 1.95 at pre-test for the intervention group. Of the 10 most important statements identified by the family carers in the two groups, the statements regarding the need for information and assurance were found to predominate. Using an independent t test, there was no significant difference found in the mean scores of the ratings of these top 10 needs statements between the control and the intervention groups in the pre-test (P > 0.05). After the needs-based intervention, the intervention group reported significantly lower levels of state anxiety [F (1, 62) = 5.63, P = 0.006] and higher levels of satisfaction of family needs [F (1, 62) = 5.61, P = 0.006] than the control group at the post-test. These findings support the effectiveness of providing families of newly admitted critically ill patients, with a needs-based educational intervention to allay anxiety and satisfy immediate psychosocial needs.29

Another study investigated two interventions specifically designed to meet the information needs of families with a relative in ICU.38 The first intervention was an open visiting policy and the second intervention was a family information booklet. The study, utilizing a one-way between subjects design, was set in a medical ICU of a university medical center in the USA. A convenience sample of family members (n = 147) of patients admitted to the ICU was recruited for the study. Questionnaires, developed by the principal investigator, were distributed to family members 24-48 hours after the patient's admission to the unit. The questionnaire addressed family satisfaction with having specific information needs met and posed questions that tested their knowledge of unit policies and personnel. Content validity of the questionnaire was established by a panel of experts. The internal consistency of the questionnaire was tested using Cronbach's alpha and was 0.97.38

The questionnaire was distributed to three groups: families who had restricted visiting hours and no booklet (n = 48), families who had open visiting hours but no booklet (n = 50) and families who had open visiting hours and an information booklet (n = 49). Prior to implementation of the intervention, no single policy regarding visiting or providing information to families was followed. No written material was available for orientating families to the unit. Differences in satisfaction levels among the three groups were analyzed using ANOVA, and χ2 and Fisher's exact tests were used to determine the difference between the groups’ knowledge of specific information. Significant increases in family satisfaction (P < 0.05) were reported between group 1 (restricted visiting hours) and group 2 (open visiting hours) in nine of 15 needs areas (see Table 5).38

Table 5
Table 5:
Need areas with statistically significant increases between groups 1 and 238

Only the results for the statistically significant statements were reported in the study. No significant increases in satisfaction were reported between group 2 (open visiting hours) and group 3 (open visiting hours/information booklet). Statistically significant increases (P < 0.05) in family knowledge of specific ICU details were noted between group 2 and group 3 in all four measured areas. Comparison of group 1 and group 3 showed statistically significant increases (P < 0.05) in family satisfaction in seven of the 15 needs areas (see Table 6) as well as family knowledge of ICU (P < 0.05) in all four measured areas. Overall, the results of the study indicated that implementation of open visiting hours increased family satisfaction. Families exposed to both open visiting hours and the information booklets were more knowledgeable about specific details than those exposed to the open visiting hours only.38

Table 6
Table 6:
Need areas with statistically significant increases between groups 1 and 338

A telephone intervention for reducing the anxiety of families of patients in an ICU was investigated in the study by Johnson and Frank.46 The effectiveness of this intervention was tested using a quasi-experimental, pre-/post-test design. Set in the cardiac ICU of a medium-sized hospital in Virginia, USA, family members of the patients in the ICU were approached and asked to participate in the study. Consecutive sampling was used to recruit 40 family members and each was assigned to the control group (n = 20) or the intervention group (n = 20) on an alternate basis. The control group received routine information from the nursing staff about the patient's status whereas the intervention group participants nominated a family member to receive a telephone call twice daily to update them on the status of the patient. The primary care nurse for the patient was designated to call the family once in the morning and once in the evening at a pre-arranged time. The nurse used a protocol checklist to provide information to the family, which included information about any new treatments, patient stability, and level of pain, test results or other changes in the patient's condition. The Spielberger State-Trait Anxiety Inventory was used to collect data from the families. Data were collected from participants after their initial agreement to participate in the study and again 48 hours later.46

There were no significant differences in the control and the intervention groups with respect to demographic characteristics. The initial mean anxiety score for the control group was 51.4 with a range of 30–80. The post-intervention mean anxiety score was 41.9 with a range of 23–54, indicating that anxiety levels had decreased over the 48-hour period. The intervention group reported an initial mean anxiety score of 61.8 with a range of 43–77. After receiving the telephone intervention, mean anxiety scores decreased to 35.15 with a range of 22–57. The mean difference between pre- and post-scores for the control group was 9.5 (SD = 8.876) and for the intervention group was 26.65 (SD = 12.579). A two-sample t test found that the mean difference in the decrease of anxiety scores for the intervention group was statistically significant [t (34) = −4.98, P < 0.05]. Overall, although both the groups showed a decrease in anxiety levels, the intervention was more effective in reducing the anxiety levels of families than routine care.46

Similarly another study investigated the effectiveness of four tailored SMS messages for preparing families of intensive care patients for the withdrawal of life support. Self-regulation theory was used to structure the messages using a combination of two clinical variables: time until death (<60 or >60 minutes) and presence of an endotracheal tube. These clinical variables were chosen based on a previous study that identified factors that could be used to predict time until death after the withdrawal of life support.59 Each message had three sections: a generic beginning and a generic end (consistent across all messages) and a tailored middle. The tailored middle part addressed pathophysiology and the start of signs of impending death observable to the family. The study was set in the critical care unit at the University of Wisconsin Hospital, Madison, Wisconsin, USA. Families were randomly assigned to usual care (n = 10) or an intervention group (n = 10) that received one of four tailored messages to prepare them for withdrawal of life support. Two instruments were used to collect data from the family participants in both the intervention and the control groups two to four weeks after the death of the patient in the ICU. The first instrument was the Profile of Mood States (POMS) and the second was the Evaluation of the Experience of Withdrawal. The POMS included 37 adjective rating scales that described six subscales of five negative moods (anxiety, anger, fatigue, depression and confusion) and one positive mood (vigor). The second instrument consisted of 25 questions to assess the next-of-kin level of coping, the level of preparation for the withdrawal of life support and the effect of the preparation on the experience of withdrawal of the life support. Participants were asked to respond on a 10-point Likert scale with 0 being not at all and 10 being very much so. Internal consistency reliability for the subscales of the POMS instrument ranged from 0.8 to 0.9. Internal consistency for the second instrument was not reported.20

Compared with the usual care group (mean 7.1, SD = 2.28), the intervention group was significantly more satisfied with the information they received (mean 9.0, SD = 1.25; Mann-Whitney U = 24.5, P = 0.05) and understood better what was to happen (mean 9.6, SD = 0.52; Mann-Whitney U = 23.00, P = 0.03) compared with the control group (mean 8.4, SD = 1.35). Results also showed that the intervention group had lower negative mood scores and higher positive mood scores than did the usual care group, although the difference was not significant. Overall, the study found that preparing families for withdrawal of life support by providing additional information through tailored messaging was effective. However, the results of this study need to be taken with caution as there was no pre-test data collected and the intervention group may have had better pre-test scores, which would impact on the results of the study.20

Only one PhD dissertation met the inclusion criteria for this review.48 The study investigated the effectiveness of usual support and information nursing interventions on the extent to which families of critically ill patients perceived their needs were being met. The setting for this study was a 12-bed ICU and a 12-bed coronary care unit of a large hospital in Alabama, USA. Using a quasi-experimental design, 60 family members were randomly assigned into three groups. The control group (n = 20) received the usual nursing staff intervention. Families assigned to the intervention groups received the support nursing intervention (support group, n = 20) or the information nursing intervention (information group, n = 20). The support intervention group were asked a series of questions (developed by the researcher) and then provided support based on the responses to those questions. The information intervention group used a checklist, designed by the researcher, to provide information to the family but only if the family indicated an interest. Data for the study were collected using the CCFNI prior to the intervention, and another version of the CCFNI adapted to measure the extent to which family members perceived needs were met after initiation of the intervention.48

There were no significant differences found among the three groups with respect to demographic characteristics. The study used the five subscales of the CCFNI – support, assurance, information, proximity and comfort – to report findings for each group. Subscale scores were computed for pre- and post-test scores. The pre-test subscale score is the sum of the responses on each of the CCFNI items correlated with this need. Correlations among the five sub-categories of family needs – support, assurance, proximity, information and comfort – have previously been reported in a study by Leske.8 During the pre-test, 24 hours after admission, families rated the importance of each of these needs. For the post-test, families rated the extent to which they believed each of these needs had been met. Significant differences were shown on orthogonal contrasts of post-test scores for information (F = 4.67, P = 0.0340) and proximity (F = 4.90, P = 0.0308) needs. There was no significant difference identified between support and informational interventions. Information needs and proximity needs were responsible for these differences.48

All needs were rated “more highly met” by the informational group than by the support and usual groups (see Table 7). The least difference (0.26) was noted between the usual and informational groups on the subscale of comfort. The greatest difference (0.46), although small, was again between the usual and informational groups in relation to information. However, none of these results were statistically significant. The results of this study suggest that the nursing information intervention delivered to families had a significant effect on the extent to which families rated their needs as being met. However, the overall study results showed no significant differences in the extent to which family members perceived needs were met between the support group and information group.48

Table 7
Table 7:
Mean subscale post-test scores for perceived needs met for each group48

Kodali et al.52 developed and tested a family communication pathway that was integrated into the patient's electronic medical record as a component of the clinical documentation process. This prompted ICU clinicians to ensure family members were informed daily – or more often – of their relatives’ condition and specifically to facilitate a multidisciplinary family conference in a timely manner and subsequent conferences, if required.

This study was conducted in a neuro-surgical ICU in the USA. A quasi-experimental design was used to evaluate the effect a communication pathway had on family satisfaction using the FS-ICU survey, with 86 families participating in the intervention phase and 26 in the control period (before implementation of the pathway). Kodali et al.52 also compared the number of family conferences between each group. There was no significant difference with family satisfaction after the introduction of the communication pathway, with the intervention group scoring a mean score of 82.24 (IQR: 71.7, 91.6; P = 0.95) and the control group scoring 79.26 (IQR: 70.6, 92.7). Although not achieving a significant effect, the number of family conferences attended by family did increase from 12 (n = 26, 46.1%) to 39 (n = 74, 52.7%; P = 0.56) for the control and the intervention groups, respectively.51 Overall, use of the electronic pathway was inconsistent among the ICU healthcare professionals despite education and prompts to use it. The intervention did also not result in a statistically significant increase in the reported occurrence of family conferences nor an increase in family satisfaction.52

Wysham et al.16 similarly used a communication tool to facilitate the exchange of information to relatives of critically ill patients. Their tool was multi-facetted and incorporated reminder placards, template progress notes, a daily checklist prompt and incorporation into the electronic record. It was based on the VALUE communication system (see Figure 2) that has been implemented in other studies.39,57,58,60 This study was conducted in the USA and was a pre-/post-design with three time points – pre-intervention (n = 38), one month post-intervention (n = 27) and three years post-intervention (n = 42). Results of family satisfaction were measured using the FS-ICU survey. To assess the processes of care, data collectors used a modification of the existing interdisciplinary bedside rounds checklist to measure and provide clinician reminders at the point of care.16

Figure 2
Figure 2:
VALUE communication system16.

Similar to the results of Kodali et al.52, there was little change to family satisfaction after the implementation of this communication tool. Family satisfaction remained relatively unchanged over the three-year period from pre-implementation to three years post-implementation (see Table 8).

Table 8
Table 8:
Family satisfaction survey – ICU; total median score [interquartile range (IQR)]52

However, process improvements were significantly affected by the implementation of the communication tool. One example of this was that daily updates increased from 62 to 84% three years following implementation of the intervention (P < 0.001). See Table 9 for the results of other process measures.16

Table 9
Table 9:
Process measures results from Wysham et al. (2014)16

The authors concluded that although process measures continued to improve, family satisfaction did not appear to change significantly with the implementation of this communication tool.16

The final study to investigate an information intervention was McCannon et al.'s53 use of a decisional video to assist family members to make informed decisions about their relatives’ care. This quasi-experimental pre-/post-study evaluated the effect of a cardio-pulmonary resuscitation (CPR) instructional video presentation to relatives of critically ill patients as a supplement to clinical discussions. This video was developed to assist relatives with decision making. Participants were recruited from a medical ICU in Massachusetts, USA, with 23 in the pre-intervention group and 27 in the post-intervention group. Family members in the study were given a pre- and post-knowledge survey, and asked about their perceptions of the video and their preference for resuscitation of their loved one at the time of death or discharge from ICU.53

Participants in the intervention group were asked if the video was comfortable to watch, of value to them and would they recommend it to other relatives in similar situations. Most participants found the video valuable, with 93% (n = 25) “very” or “somewhat” comfortable watching it, 81% (n = 22) would “definitely” or “probably” recommend it to others and 67% (n = 18) thought the video was “very” or “somewhat” helpful. Chart reviews were conducted on the patients to determine if their relatives had chosen full resuscitation or decided not to resuscitate if their relative died. Although not statistically significant, the preference for full code resuscitation for the intervention group (n = 16, 59%) was less than the control group (n = 18, 78%; P = 0.23). Overall, the intervention group had statistically significant better CPR knowledge than the control group (P = 0.008). The average knowledge score for relatives in the intervention group was 2.9 (SD = 1.2), whereas the control group had an average score of 2.0 (SD = 1.1).53

The authors concluded that viewing a video enhanced communication and expectations between families and clinical staff about the goals of treatment in the ICU for their loved one, although the study was not sufficiently powered to ascertain if viewing the video would affect resuscitation decisions.53

Comfort

Two studies were identified that investigated comfort inventions. Both the studies examined interventions that aimed to meet family needs, although by very different methods – one explored a decisional aid pathway to address family members’ comfort with their decision making50 and the other used an environmental change to improve comfort levels.11

Cox et al.50 conducted their study in three medical ICUs in the USA and explored the effectiveness of a decision aid pathway. The purpose of the decision aid was to assist clinicians and surrogate decision makers with making decisions for patients that would maximize not only survival but also comfort whereby survival was the aim but to avoid prolonged unrealistic treatment. The decision aid was developed in collaboration with the surrogate decision makers and ICU clinicians – a process that included lengthy iterative modifications and formative cognitive analysis. The aid included medical information, elicitation of patient values and preferences, treatments, procedures and individualized mortality and morbidity data about the short- and long-term outcomes of the patient's condition.50

This was a prospective pre-/post-pilot study with 17 participants in the intervention group and 10 in the control group. Outcomes were measured using four previously developed and tested tools – the Medical Comprehension Scale,21 the Quality of Communication Scale,61 the Physician-surrogate Prognostic Discordance Scale62 and the Decisional Conflict Scale.63 All of these measures showed significant differences between the intervention and the control groups, with the intervention group scoring significantly higher after using the decisional aid (see Table 10).50

Table 10
Table 10:
Outcomes of Cox et al.'s Decisional Aid Pilot Study (2012)50

Overall, the results of this pilot study showed that the decision aid improved decision making for surrogates of long-term ventilated patients and was an easy-to-use tool.50

The final included study in the category of comfort was by Jongerden et al.11 In this study, the authors investigated how a change in the ICU environment might influence the family's perceived comfort needs. This study was undertaken in a medical/surgical ICU in the Netherlands that relocated their existing ICU to new premises with modern single rooms with large windows. In addition to providing a more efficient workflow for ICU clinicians, noise reduction measures for patients and families were also implemented.11

A prospective pre-/post-design was utilized and outcomes were measured using the FS-ICU to ascertain if a comfortable environment improved more satisfaction with the care the family members’ relative was receiving. Family members were requested to complete the survey 10 weeks after their relatives’ discharge from ICU or for non-survivors 10 weeks after the patients’ death. There were 150 participants in the control group and 173 in the intervention group. The mean FS-ICU score significantly increased from 69.5 (SD = 16.6) to 74.1 (SD = 15.2, P = 0.02). Satisfaction with the subscale of “care” increased from 65.1 (SD = 17.8) to 70.8 (SD = 18.0, P = 0.007) although satisfaction with “decision making” was not significantly changed (74.9; SD = 17.4 to 78.0; SD = 14.4; P = 0.12). When results were adjusted for possible confounders, satisfaction was still higher for the intervention group (P < 0.01). Overall, the authors concluded that the ICU environment is an important consideration in family satisfaction and general feelings of comfort.11

In summary, the results from the studies in this systematic review indicate that the most effective interventions to meet family needs of critically ill patients in an adult ICU include provision of a FSN, a diary documenting the experience, information for families via leaflets/brochures, open or more flexible visiting hours, the development of structured communication programs for families to provide information about patient progress and comfort measure such as changes to the physical environment and noise reduction measures.

Discussion

The original systematic review of studies investigating interventions to meet family needs of critically ill patients admitted to an adult ICU27 provided evidence for the effectiveness of improving the transfer of information to families with leaflets/brochures, open or more flexible visiting hours and the development of structured communication programs for families to provide information about patient progress. This current update reinforced these findings with further studies as well as identifying other effective interventions, namely a FSN, and diarizing the ICU experience – by either healthcare professionals and/or family members. The main interventions explored with regard to this topic were nurse-coached volunteers or healthcare professionals acting as family supporters, FILs/brochures, needs-based education for families, open visiting hours, changes to the ICU environment, telephone follow-up, tailored messages, patient progress journals, structured communication programs and support groups. The discussion of the findings from the studies in this review will be deliberated with the interventions grouped according to the family needs areas of support, assurance, proximity, information and comfort.

Support

According to Leske,8 the identified family need of support reflects the availability of support resources including the need for expert help, assistance or aid. Support in the 11 studies that addressed this topic in this systematic review was provided by volunteers, FSNs or other healthcare professionals, through the use of a progress journal, education of ICU clinicians and support groups.13–15,33,42–44,47,49,51,55 The success of the interventions was assessed using a range of outcomes including family needs, comfort, anxiety, stress, hope, social support and satisfaction.

The volunteer support program implemented and tested in the study by Appleyard et al.44 showed no significant improvements in meeting the needs of support, assurance, proximity and information for families of patients in the ICU who participated in the study. There was a significant improvement in comfort reported by families, although no changes were made to the physical environment, which suggests that the improvement was only in the perceptions of comfort by the family members who participated in the study. This indicated that the family was psychologically comforted as opposed to physically, which is indeed what this need typically aims to address. There were a number of limitations identified, which may have impacted on the overall results of the study. The results were limited by the small convenience sample size and the early stage in development of the tool for measuring families’ comfort levels. Overall, there is no strong evidence to recommend a volunteer support program for meeting the needs of family members of patients in the ICU.44

The use of a healthcare professional as a family support, however, showed a more positive result, when Yousefi et al.,15 Shelton et al.,14 Moore et al.13 and Davidson et al.33 further examined the effect of a family mentor program but with healthcare professionals instead of volunteers. They concluded that this type of program was beneficial with the intervention significantly improving satisfaction rates of family participants, although again small numbers of participants weakened the generalizability of these results. Shelton et al.14 and Moore et al.13 also found that a professional FSN increases family satisfaction with the care of their relative in ICU. However, a limitation of these studies was that the FSN did not approach the families until day 2 because of particulars of the inclusion criteria of the studies. This intervention would be more effective if introduced to families on the first day of admission to an ICU when families require the greatest amount of support.13,14

Davidson et al.33 similarly found that a FSN role offered support and guidance in the ICU environment; however, the authors did not assess family satisfaction as an outcome of the study. Rather they asked relatives what they considered to be the most important needs that should be met while having a critically ill relative in the ICU. Most importantly, family members nominated that they needed to know how their loved one was being medically treated and to be assured that the best possible care was provided as the needs most important to them. Interestingly, Davidson et al.33 reported two additional needs that were important to the families. Parking arrangements at the large tertiary hospital setting of the study were inaccessible and expensive for families and they considered that this aspect of having a gravely ill relative should be addressed. In addition, families suggested the introduction of the use of a rubber pencil grip for intubated patients to use when they write as a form of communication, because a simple pen or pencil was too thin to be easily maneuvered.

The use of a family-based progress journal for patients in the ICU undergoing cardiac surgery by Kloos and Daly47 resulted in no significant difference in state or trait anxiety levels between the control and the intervention groups. The authors of this study chose this specific invention based on the numerous reports in the literature that information and support are two high needs of families of patients in the ICU.6,26,38 The authors suggest that although the use of the diary provided family members with an opportunity for raising questions and requesting information, the context in which communication and support was provided may have had a bigger impact on the families’ perceptions of whether their anxiety levels were being addressed. The study also highlights the importance of preparing families for anxiety relating to perceptions of physical suffering by the patient. Although the study revealed no influence from the use of a patient diary on family members’ uncertainty, previous studies have suggested a relationship between provision of information in a caring and supportive manner and lower uncertainty levels.64,65 Kloos and Daly47 concluded that there is no evidence to support the use of progress journals or diaries by families of patients in the ICU in anxiety reduction.

Conversely, Jones et al.56 found that a diary significantly reduced the symptoms of post-traumatic stress for participants who read the diary three months after the discharge from ICU of their relative, although small participant numbers limit the results somewhat. However, Garrouste-Orgeas et al.51 found similar results with more participants. Although the study methods were disparate to Jones et al.,51,56 participants with access to a diary had significant less post-traumatic stress symptoms. These results suggest that use of a diary by clinicians and relatives and even the patients themselves will benefit the relatives’ psychological health in the long term.

The two included studies that investigated the use of support groups found that this intervention had no statistically significant impact on the outcomes of stress, social support, hope and satisfaction.42,43 Some of the possible reasons for the lack of improvements from support groups include the difficulty in developing support group cohesiveness and the priority of the family for remaining at the patient's bedside. As the stay for an ICU patient is usually short, the family has only limited opportunity to attend support sessions.66 Verhaeghe et al.19 also support this assumption that family members of the patients in the ICU tend to give priority to the wellbeing of their relative and therefore limit the time spent away from the bedside.

A quality improvement project looked at offering support to relatives by way of an intervention whereby ICU clinicians were educated in palliative care with some even targeted as champions of palliative and end-of-life care. The results, however, showed no significant effect on families’ satisfaction with their relatives care in ICU, despite adjustment for co-variants. Curtis et al.49 concluded that families might benefit more from a direct intervention.

Assurance

The need for assurance relates to a desire by the family to maintain or redefine hope about the patient's outcome.26 This need often specifically relates to communication with ICU staff. As long as families are provided with regular updates regarding their relative, they feel that this need is being met. In this systematic review, this concept is supported by the findings from the study by Moreau et al.40 indicating that junior physicians performed as well as senior physicians when communicating with patients’ families. The findings from the studies by Medland and Ferrans30 and Laurette et al.39 also revealed that the introduction of a structured communication program for family members of patients in the ICU can decrease the number of incoming telephone calls from the family without compromising satisfaction with care or their need for information and can lessen the burden of bereavement. However, in the study by Laurette et al.,39 the absence of a pre-test for comparing relatives’ anxiety and depression scores, prior to their relative's death, limits the confidence in the use of structured communication for these families.

In this update of the review, Jacobowski et al.10 used family participation in ICU rounds as a means to inform families and provide assurance. Total family satisfaction did not, however, change significantly between the intervention and the control groups; however, they did feel more supported in their decision-making capabilities and were more satisfied with the number of meetings with clinicians. A limitation to this study was the high refusal rate from invited participants (48%) and the authors concluded that this may have biased the results.10

Proximity

Two studies were found that investigated the effectiveness of interventions to address family members’ need for proximity to the patient while in the ICU, both focusing on more open visiting hours for patient's families. This need reflects a desire to link and maintain familial relationships.26 The study by Ramsey et al.41 reported that families and nurses were generally satisfied with more time to visit the patient; however, the study had several limitations. The study design was weak, with the pre- and post-test family groups independent from each other as there was a different family member surveyed for the pre- and post-test. Therefore, family members in the study could only respond to the visiting hours that they experienced. In addition, the intervention consisted of only a slight change in visiting hours, an increase of 30 minutes from the previous visiting time allowed.41

More recently, Baharoon et al.54 examined the effects of restricted visiting times versus open visitation. The results of this study did not support the hypothesis that an open visitation policy would increase family satisfaction with their relatives’ care in an ICU. Similar to the study by Ramsey et al.,41 there were some limitations such as a small sample size and it was also suggested that there might be some socio-cultural differences between the intervention and the control groups as the intervention was administered at a different hospital site. Also, the authors acknowledged that there was not a consistent methodology in the administration of the CCFSS.54

Although there is no strong evidence to recommend the use of open visiting hours resultant from these two studies, additional reports within the literature highlight the importance for families of being close and able to see the patient regularly and therefore advocate the use of a more flexible visiting hours for families of patients in the ICU.67–69 The study by Henneman et al.38 investigated two areas of family needs: an open visitation policy, to address the need for proximity to the patient, and an information booklet, to address families’ information needs. The results of the information booklet will be discussed in the following Information section of this discussion. With respect to visiting hours, the study found that open visiting hours, as a single intervention, significantly improved family satisfaction. Again there were several limitations identified within the study. The nurses’ knowledge and education underpinning the interventions tested in this study, particularly in relation to open visiting hours, may have influenced and subsequently modified nurse/family interactions for all groups therefore influencing family satisfaction results.37 Restricted visiting hours are often felt by families to be negative and burdensome.20 Family members also tend to report a lack of control when time to visit their relative is restricted that results in feelings of helplessness and powerlessness.67

Information

The need for information reflects the family's goal of understanding the patient's condition.26 The study by Chien et al.29 demonstrated the importance of using identified family needs to provide information that will reduce anxiety and improve satisfaction. However, it is important to note that cultural differences may have impacted on the results of the study and further investigation of these types of family education programs in a wider context are required, particularly with families from different socio-economic and cultural backgrounds. The study authors recommend that the formulation of a family education program should be based on the results of an initial family needs assessment. If this strategy was implemented, ICU staff would have greater success in meeting the families’ individual needs.28–30,45,46 Chavez and Faber45 also utilized an informational program to the ICU in the form of an orientation program and the results suggest some decrease in the relatives’ stress symptoms. However, the reliability and validity of the outcome tool (Kerle and Bialek SSS) was not reported and therefore these results cannot be considered unequivocally.

The studies by Azoulay et al.28 and Henneman et al.38 tested the effectiveness of providing information to families through the use of an information leaflet and booklet. Azoulay et al.28 found that the use of this simple intervention significantly improved comprehension by family members. Similarly, Henneman et al.38 accredited the use of information booklets to be a practical method to address family informational needs; however, the results were not statistically significant. Knowledge and comprehension of the information provided by the ICU staff are essential if family members need to become active members in the patient's care and an information source about the patient's wishes.6

Both Kodali et al.52 and Wysham et al.16 considered the effects of a communication pathway or tool to ensure ICU clinicians were keeping relatives reliably informed of their critically ill relatives’ treatment and condition. In both the studies, no significant changes to the families’ satisfaction were achieved and it was surmised that families might be better engaged more directly, for example with the use of family conferences.

The study by Kirchhoff et al.20 that examined the effectiveness of providing families of dying patients in the ICU with four tailored messages to prepare them for the withdrawal of life support found that the information provided was helpful. However, the intervention was only tested on selected families and the sample size used for the study was small. This, therefore, limits the generalizability of the study results. The study by Johnson and Frank46 also tested the effectiveness of a telephone intervention for families of dying patients in the ICU. Although the authors found that this strategy is feasible and effective for meeting needs of such families, the sample size was small and the researchers did report reluctance on part of the nursing staff in making the telephone calls. Nurses are in a unique position to provide this intervention to families because they have an in-depth knowledge of the patient and have developed a relationship with the family.46,70 Additional research is needed to support the implementation of these two interventions.

McCannon et al.53 looked at providing an educational video for relatives in an effort to aid decision making regarding resuscitation. The results were not statistically significant; however, the participants who watched the video had a deeper knowledge of the concept of full resuscitation and were less likely to have a preference for full resuscitation of their critically or gravely ill relative than the control group.53

Nurses were also utilized by Watson48 in her PhD study examining the provision of information to families on a needs basis. Families in the information intervention were given specific information by an ICU nurse when they expressed an interest. The results, although not being statistically significant, did show some differences between the group given this specific information and the group who did not receive additional information apart from the ICU's usual practice.48

Comfort

This family need reflects a desire to be physically comfortable to reduce distress.26 In this initial review,27 no intervention study was found that investigated the use of comfort measures for families of patients in the ICU. However, the study by Appleyard et al.,44 which examined a support intervention, found that families reported significant improvement in comfort as a result of the nurse-coached volunteer program.

In 2012, Cox et al.50 examined the effects of a decisional aid to help families make decisions about continued treatment of their critically ill relative. Results of this study suggest that participants in the intervention group can more confidently make informed decisions about the treatment of their relatives.50 Jongerden et al.11 considered the effects of a change in the ICU physical environment on relatives of patients in the ICU. The results suggest that the physical surroundings are an important aspect of the ICU experience for relatives.11 Despite the paucity of research focused on comfort, results from these studies suggest that there is further scope for additional research in this area.

Limitations of the review

Several of the studies included in this review identified a number of limitations within their study design. In addition, the use of satisfaction outcomes in some of the studies was ineffective in providing clinically significant results for the intervention being tested.30,38,43 Several studies measured the effect of the intervention in reducing families’ anxiety levels; however, it is difficult to ascertain whether the reduction in anxiety is because of the intervention itself or the level of severity of the patient's illness.29,39,46 Another important limitation was the age of some of the studies included in the review. Studies published in the late 1980s or early 1990s had limited reporting of study methods, statistics used for analysis and results of some study outcomes. The lack of resources available meant that only those articles published in English were included and as a consequence studies published in other languages may have been missed. Overall, this review highlighted a gap in research and the need for more rigorous high-quality research studies to address the needs of family members with a relative admitted to an adult ICU.

Conclusion

This systematic review has made several recommendations for practice with regard to the appropriate interventions to meet family needs of critically ill patients in an adult ICU. The review has also highlighted the considerable need for more high-quality intervention studies in this area.

Recommendations for practice

Despite this update reviewing a further 14 recent studies, overall there is still no strong evidence to support the implementation of interventions to meet family needs of critically ill patients admitted to an adult ICU. The implications for practice to meet the needs of families with a relative admitted to an ICU are constrained by the absence of more rigorous research in this setting. However, there is limited evidence to support the use of support groups and family support co-ordinators, structured communication programs and communication interventions that promote family involvement in care, flexible visiting hours, a comfortable physical environment and information provided via leaflets/brochures and/or specifically designed programs.

The following interventions to meet the needs of families with a relative admitted to an ICU have been researched in the clinical area and have implications for clinical practice. The associated JBI grades of recommendations are provided, based on the study design.

  • The use of support groups for family members of patients admitted to an ICU may complement other types of support offered to the family such as bedside support and access to the patient (Grade A).
  • Family support co-ordinators improve communication between ICU clinicians and families and increase family satisfaction with care (Grade A).
  • Introducing structured communication programs for family members of patients in the ICU can decrease the number of incoming telephone calls from family members without compromising satisfaction with care or the family's need for information (Grade B).
  • Communication interventions help promote family involvement in care, improve clinician and family interaction and may reduce the development of post-traumatic stress-related symptoms after ICU discharge (Grade B).
  • Open or more flexible visiting hours for families of patients in the ICU may help improve family satisfaction (Grade A).
  • Providing a comfortable physical environment that promotes noise reduction may increase family satisfaction (Grade B).
  • Information provided to families via an information leaflet or specifically developed program may help alleviate anxiety and improve comprehension (Grade A).
  • Family participation in ward rounds increases frequency of communication with ICU clinicians and assists in decision making (Grade A).

Implications for research

What is apparent from the evidence and the recommendations is that families need in-person support and assistance, a comfortable physical environment and communication interventions that promote family participation and clinician interaction. This updated review strengthens the findings from the original systematic review – the need for more rigorous high-quality studies investigating interventions on this topic. A limitation of the review was that the majority of included studies evaluated the effect of the intervention through the family's satisfaction with care. More robust studies would establish the effect of interventions on family needs.

This systematic review has specifically highlighted that the most significant gap in research is the absence of primary studies that investigate the effectiveness of interventions to meet family needs of critically ill patients admitted to an adult ICU. Future research studies should focus on the use of technology to meet family information needs and designing interventions to address specific family needs areas and predictive observational studies to identify significant variables that influence the needs of the families of the patient in the ICU. More research in this area such as studies using two-group experimental or quasi-experimental designs with larger sample sizes to ensure sufficiently powered studies would assist in determining whether interventions specifically designed to meet the needs of family members would decrease family and patient anxiety and improve hope and uncertainty in illness while the patient is in the ICU. In addition, a qualitative systematic review on the experiences of families of the patients in the ICU would strengthen the knowledge within this area.

Appendix I: Search strategy

Family needs systematic review – search strategies

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Appendix II: Appraisal instruments

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Appendix III: Data extraction instruments

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Appendix IV: Excluded studies

2014 (update)

  1. Bailey, J J, Sabbagh, M, et al. (2010). Supporting families in the ICU: a descriptive correlational study of informational support, anxiety, and satisfaction with care. Intensive Crit Care Nurs. 26(2):114–122.
  2. Reason for exclusion: No intervention.
  3. Barber, H Z (2013). Exploring adult attachment style and conflict resolution strategies: a directed content analysis to improve communication with family members of patients in the intensive care unit. University of Washington. PhD.
  4. Reason for exclusion: Qualitative research.
  5. Black, MD, Vigorito, MC, et al. (2013). A multifaceted intervention to improve compliance with process measures for ICU clinician communication with ICU patients and families. Crit Care Med. 41(10):2275–2283.
  6. Reason for exclusion: Population not families (clinicians).
  7. Bloomer, M, Lee, S, et al. (2010). End of life clinician-family communication in ICU: a retrospective observational study – implications for nursing. Aus J Adv Nurs. 28(2):17–23.
  8. Reason for exclusion: Medical record review.
  9. Bloomer, M, Lee, S, et al. (2011). End of life clinician-family communication in ICU: a retrospective clinical study – implications for nursing. Aus Crit Care. 24(1):66.
  10. Reason for exclusion: Population not families (nurses).
  11. Carson, SS, Vu, M, et al. (2012). Development and validation of a printed information brochure for families of chronically critically ill patients. Crit Care Med. 40(1):73–78.
  12. Reason for exclusion: Not research – report on the development of a brochure.
  13. Carlet, J, Garrouste-Orgeas, M, et al. (2010). Managing intensive care units: make LOVE, not war! J Crit Care. 25(2):359 e359–359 e312.
  14. Reason for exclusion: Position paper describing quality improvement program.
  15. Cheung, W, Aggarwal, G, et al. (2010). Palliative care teams in the intensive care unit: a randomized, controlled, feasibility study. Crit Care Resusc. 12(1):28–35.
  16. Reason for exclusion: Not a validated tool.
  17. Curtis, JR, Ciechanowski, PS, et al. (2012). Development and evaluation of an interprofessional communication intervention to improve family outcomes in the ICU. Contemp Clin Trials. 33(6):1245–1254.
  18. Reason for exclusion: Not research – describes the development of a tool.
  19. Daly, BJ, Douglas, SL, et al. (2010). Effectiveness trial of an intensive communication structure for families of long-stay ICU patients. Chest. 138(6):1340–1348.
  20. Reason for exclusion: Population not families (patients).
  21. Higginson, IJ, Koffman, J, et al. (2013). Development and evaluation of the feasibility and effects on staff, patients, and families of a new tool, the Psychosocial Assessment and Communication Evaluation (PACE), to improve communication and palliative care in intensive care and during clinical uncertainty. BMC Med. 11(1).
  22. Reason for exclusion: Methods for determining sample size not clear.
  23. Hill, J, Fullerton, L, et al. (2012). Establishing a collaborative partnership with families in the ICU: addressing informational needs on admission. Dynam Crit Care. 23(2):26.
  24. Reason for exclusion: Qualitative research
  25. Hoffman, LA (2011). Family rounds in the ICU: a means to improve family satisfaction? Crit Care Alert. 19(2):12–13.
  26. Reason for exclusion: Commentary on another study.
  27. Huffines, RM, Johnson, KL, et al. (2013). Improving family satisfaction and participation in decision making in an intensive care unit. Crit Care Nurse. 33(5):56–68.
  28. Reason for exclusion: Quality improvement initiative.
  29. Jahrsdoerfer, M, Goran, S (2013). Voices of family members and significant others in the tele-intensive care unit. Crit Care Nurse. 33(1):57–67.
  30. Reason for exclusion: Survey tools not validated.
  31. Kauts, V, Hakim, KA, et al. (2014). Development and evaluation of a medical communication scale. Bahrain Med Bull. 36(2):90–93.
  32. Reason for exclusion: Survey tool not evaluated.
  33. Kodali, S, Stametz, RA, et al. (2014). Family experience with intensive care unit care: association of self-reported family conferences and family satisfaction. J Crit Care. 29(4):641–644.
  34. Reason for exclusion: Uses same data from another study.
  35. Krimshtein, NS, Luhrs, CA, et al. (2011). Training nurses for interdisciplinary communication with families in the intensive care unit: an intervention. J Palliat Med. 14(12):1325–1332.
  36. Reason for exclusion: Population not families (nurses).
  37. Schnell, D, Abadie, S, et al. (2013). Open visitation policies in the ICU: experience from relatives and clinicians. Intensive Care Med. 39(10):1873–1874.
  38. Reason for exclusion: No information on methods including ethical approval.
  39. Schwarzkopf, D, Behrend, S, et al. (2013). Family satisfaction in the intensive care unit: a quantitative and qualitative analysis. Intensive Care Med. 39(6):1071–1079.
  40. Reason for exclusion: Qualitative and descriptive study – does not evaluate effectiveness of an intervention.
  41. Shaw, DJ, Davidson, JE, et al. (2014). Multidisciplinary team training to enhance family communication in the ICU. Crit Care Med. 42(2):265–271.
  42. Reason for exclusion: Methods not clear.
  43. Simoni, RCM, da Silva, MJP (2012). The impact of the visit of nursing on the necessities of the host families of ICU. Revista da Escola de Enfermagem da USP. 46:65–70.
  44. Reason for exclusion: Survey tool not validated.
  45. Whitcomb, JJ, Roy, D, et al. (2010). Evidence-based practice in a military intensive care unit family visitation. Nurs Res. 59(1 Suppl):S32–S39.
  46. Reason for exclusion: Survey tool not validated.
  47. Yeager, S, Doust, C, et al. (2010). Embrace hope: an end-of-life intervention to support neurological critical care patients and their families. Crit Care Nurse. 30(1):47–59.
  48. Reason for exclusion: Report on the development of a specialized program.

2011

  1. Azoulay, Ã, et al. (2004). Half the family members of intensive care unit patients do not want to share in the decision-making process: a study in 78 French intensive care units. Crit Care Med. 32(9):1832–1838.
  2. Reason for exclusion: Descriptive study – does not evaluate effectiveness of an intervention.
  3. Baker, RA, Wu, W, Teno, J, Kreling, B, Damiano, A, Rubin, H, Roach, M, Wenger, N, Phillips, R, Desbiens, N, Connors, Jr A, Knaus, W, Lynn, J (2000). Family satisfaction with end-of-life care in seriously ill hospitalized adults. J Am Geriatr Soc. 48:S61–S69.
  4. Reason for exclusion: Did not meet objectives of the systematic review.
  5. Chui, WY, Chan, S W (2007). Stress and coping of Hong Kong Chinese family members during a critical illness. J Clin Nurs. 16(2):372–381.
  6. Reason for exclusion: Descriptive study – does not evaluate effectiveness of an intervention.
  7. Curry, S (1995). Identifying family needs and stresses in the intensive care unit. Brit J Nurs. 4(1):15–19.
  8. Reason for exclusion: Descriptive study – does not evaluate effectiveness of an intervention.
  9. Daly, K, Kleinpell, RM, Lawinger, S, Casey, G (1994). The effect of two nursing interventions on families of ICU patients. Clin Nurs Res. 3:414–422.
  10. Reason for exclusion: Poor study design, small sample size and no effects found.
  11. Delgado, EM, Callahan, A, Paganelli, G, Reville, B, Parks, S, Marik, P (2004). Multidisciplinary family meetings in the ICU facilitate end-of-life decision making. Am J Hosp Palliat Med. 26:295–302.
  12. Reason for exclusion: Study did not meet the objectives of the systematic review.
  13. Dyer, ID (1991). Meeting the needs of visitors – a practical approach. Inten Care Nurs. 7(3):p135–p147.
  14. Reason for exclusion: Discussion paper – not a research study.
  15. Halm, M (1991). Effects of support groups on anxiety of family members during critical illness. Heart Lung. 19(1):62–71.
  16. Reason for exclusion: Inappropriate statistics used for analysis.
  17. Jacobowski, N, Dugas, A, Foss, J, Girard, T, Ely, E, Mulder, J (2007). Family rounds in the ICU: improving communication and end-of-life experiences in critical care. Crit Care Med. 35:680.
  18. Reason for exclusion: Conference paper – unable to contact author for more information.
  19. McGaughey, J, Harrison, S (1994). Developing an information booklet to meet the needs of intensive care patients and relatives. Inten Crit Care Nurs. 10:271–277.
  20. Reason for exclusion: Not a research study.
  21. Plowright, C (1995). Needs of visitors in the intensive care unit. Brit J Nurs. 4:1081–1083.
  22. Reason for exclusion: Discussion paper – not a research study.
  23. Quinn, S, Redmond, K, Begley, C (1996). The needs of relatives visiting critical care units. Nurs Rev. 15(1):9–14.
  24. Reason for exclusion: Discussion paper – not a research study.
  25. Stapleton, RD, Engelberg, R, Wenrich, M, Goss, C, Curtis, J (2006). Clinician statements and family satisfaction with family conferences in the intensive care unit. Crit Care Med. 34:1679–1685.
  26. Reason for exclusion: Descriptive survey – not an effectiveness study.
  27. Travaline, JM (2002). Communication in the ICU: an essential component of patient care: strategies for communicating with patients and their families. J Crit Ill. 17(11):451–456.
  28. Reason for exclusion: Discussion paper – not a research study.
  29. Westphal, C, Rustom, M, Schwartz, S, Daly, G, Decamillo, P (2006). Effect of a workbook and family support service on emotional distress, need satisfaction, and resuscitation decisions. Am J Crit Care. 15:343–343.
  30. Reason for exclusion: Conference paper – unable to contact author for more information.
  31. Wesson, JS (1997). Meeting the informational, psychosocial and emotional needs of each ICU patient and family. Intens Crit Care Nurs. 13(2):111–118.
  32. Reason for exclusion: Discussion paper – not a research study.
  33. Whitcomb, JA, Roy, D, Blackman, V (2010). Evidence-based practice in a military intensive care unit family visitation. Nurs Res. 59:S32–S39.
  34. Reason for exclusion: Not a research study.
  35. Yang, S (2008). A mixed methods study on the needs of Korean families in the intensive care unit. Aust J Ad Nurs. 25(4):79–86.
  36. Reason for exclusion: Qualitative and descriptive study – does not evaluate effectiveness of an intervention.
  37. York, NL (2004). Implementing a family presence protocol option. Dim Crit Care Nurs. 23(2):84–88.
  38. Reason for exclusion: Discussion paper – not a research study.
  39. Zazpe, C, et al. (1997). Meeting needs of family members of critically ill patients in a Spanish intensive care unit. Inten Crit Care Nurs. 13(1):12–16.
  40. Reason for exclusion: Discussion paper – not a research study.

Appendix V: List of included studies

2014

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2011

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Keywords:

Critical care; family; family-centered care; intensive care; systematic review

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