Having a family member admitted to an intensive care unit is a stressful experience that may lead to psychological symptoms including depression, anxiety, and posttraumatic stress disorder.
To better understand the phenomenon of stress experienced by families of intensive care unit patients and identify nursing interventions that may help reduce it.
An integrative literature review was performed to identify principal stressors for families of patients receiving care in neonatal, pediatric, and adult intensive care units and recommended nursing interventions.
The principal stressors in the 3 types of intensive care units were change in parental role or family dynamics, appearance and behavior of the patient, the care setting, and communication with the health care staff. Nursing interventions should focus on valuing the role of family members in patient care, improving communication, and providing accurate information.
Family members of intensive care patients will benefit from nursing interventions that adequately acknowledge and address the stress they experience.
Nurses play a crucial role in helping to reduce the stress experienced by family members of intensive care unit patients.
This article has been designated for CE contact hour(s). The evaluation tests your knowledge of the following objectives:
Describe the stressful experience of family members of patients receiving intensive care.
Outline the principal stressors family members are exposed to when their relative is hospitalized in intensive care.
Analyze the multiple nursing interventions that adequately address the stress experienced by family members of intensive care patients.
To complete evaluation for CE contact hour(s) for test C2114, visit www.ccnonline.org and click the “CE Articles” button. No CE fee for AACN members. This test expires on February 1, 2023.
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Having a family member admitted to an intensive care unit (ICU) is a stressful event.1–20 Many studies have highlighted the impact of stress on the family members of a patient receiving care in a neonatal,2–4,9,11,14 pediatric,1,8,12,16–18 or adult ICU.5–7,10,13,15,19 Such stress may place family members at risk for symptoms of psychological disorders including depression, anxiety, and posttraumatic stress disorder.2,13,21–25
Recent studies have indicated high rates of stress among family members of ICU patients across varied settings. In a study of mothers of premature newborns admitted to neonatal ICUs (NICUs), Shanmugam and Ramachandra26 found that all participants in the study (N = 100) reported experiencing stress, and 38% reported experiencing severe stress. In a study of fathers, Koliouli et al11 found that 75% of the 48 participants reported moderate to severe stress after their premature child was admitted to the NICU. Young fathers may be at higher risk of stress than older fathers in this situation.3 In addition, parents may experience more stress when the baby’s gestational age and birth weight are low and when the baby spends more days in the NICU.9
The parents of children admitted to pediatric ICUs (PICUs) have also reported experiencing considerable stress related to the experience.1,8,12,16–18,20 The findings of a study by Gladston et al27 showed that 56% of fathers and 52% of mothers exhibited moderate stress during their child’s ICU hospitalization. Parents experienced significantly higher stress when the child was intubated,1,17,18 received inotropic agents,1 and had a more unstable health condition1,17 and when the hospital stay was prolonged.17
Families of patients admitted to adult ICUs have also reported high levels of stress.5–7,10,13,15,19 The reported prevalence of stress among family members of adult patients ranges from 42% to 71%,13,22,23 with significantly higher percentages associated with prolonged hospital stays. Higher levels of stress were associated with feelings of depression and the use of less effective coping strategies to deal with the situation.28 In addition, high levels of stress may lead to post–intensive care syndrome in family members, which refers to significant and chronic psychological sequelae after a relative’s hospitalization in an ICU.29
According to recently issued guidelines for family-centered care in the neonatal, pediatric, and adult ICU,30 part of the nurse’s role is to assess stress among family members of a patient receiving intensive care and to intervene to help reduce this stress. We conducted an integrative review to establish the state of knowledge regarding stress experienced by families of ICU patients and nursing interventions that may help reduce this stress. This work was based on the framework for conducting an integrative review described by Whittemore and Knafl.31 This framework involves identifying the problem, searching the literature, evaluating the data, analyzing the data, and presenting the results.
Identifying the Problem
We sought to explore the stress experienced by family members of a patient hospitalized in the ICU and nursing interventions that may be implemented to reduce this family stress. To obtain a complete picture of these phenomena, this integrative review included 3 different populations: patients in neonatal, pediatric, and adult ICUs.
Stress is a complex concept that has been defined in many different ways.32–34 Individual stress is different from parental or familial stress. According to Selye,33 stress occurs when a person evaluates a situation as exceeding their adaptive resources. A drastic change in circumstances may trigger this disruption of a person’s psychic and even somatic structure. Individual stress is therefore an individual response to a stressful situation that does not include interaction with other members of a system. In contrast, familial stress is a systemic response by the family unit to a loss, whether foreseen or unforeseen. It is manifested by a functional change in family dynamics.32 Familial stress, which is an important clinical concept in nursing sciences, is often confused with individual stress.27 Some nursing researchers have focused on parental stress, which has been defined as the interaction among environmental elements in a personal or familial setting that influence the parental response to stress.34,35 Given the similarity of family stress and parental stress, we used both terms in our integrative review.
Part of the nurse’s role is to assess stress among family members of a patient receiving intensive care and to intervene to help reduce this stress.
Because this integrative review focuses on the stress experienced by family members of a patient receiving intensive care, the concept of family must be defined. A family is a group of individuals who have a meaningful relationship with each other and are bound by mutual consent. Family members collectively assume life responsibilities and provide mutual support.30,36 This definition is meant to be inclusive to represent the various family contexts present in today’s society. The terms family members, parents, and family are used in this article to refer to the family.
As described above, stress is an integral part of a family’s experience when one of its members is admitted to an ICU. The nurses in an ICU have an important role to play in caring for family members of an ICU patient, which involves identifying family stressors and implementing individualized interventions to prevent or reduce them. The aim of this integrative review was to better understand the phenomenon of stress experienced by families with a member in the ICU and nursing interventions that may help reduce this stress.
Searching the Literature
We conducted a search of the literature using the MEDLINE, CINAHL, and Cochrane databases. Because of the large number of articles that have been published on the topic of family stress, we focused on the period from 2007 to 2019 in an attempt to ensure that our analysis was realistic, effective, and current. In addition to the broad nature of the topic, which includes 3 different clinical care settings, family stress has received increasing attention in recent years, resulting in many different research projects. The first guidelines for the support of family members of ICU patients were published in 2007, coinciding with an increase in scientific interest in the family-centered approach to intensive care. These guidelines were revised in 2017 after a profusion of studies carried out on the subject over the preceding decade.30
We searched the literature using the following keywords: NICU, neonatal intensive care unit, PICU, pediatric intensive care unit, pediatric intensive care, parental stress, ICU, intensive care unit, intensive care, and family stress. Articles were included if they met the following criteria: (1) publication in French or English, (2) presence of the keyword stress in the abstract or summary, (3) subject matter involving stress experienced by parents or family members of a patient hospitalized in an ICU, and (4) reporting research results. The search strategy led to the identification of 934 articles in the 3 databases. After the removal of duplicates and the application of inclusion criteria, a total of 38 articles were included in this integrative review, including quantitative and qualitative studies with different designs. The literature review process is summarized in the Figure, and details about the included studies are shown in Table 1.
Evaluating and Analyzing the Data
As suggested by Whittemore and Knafl,31 each selected article was evaluated for quality of the data provided, validity, methodological quality, and representativeness of the primary sources used. We used a self-constructed tool for this purpose. In cases of disagreement, we asked a third party to evaluate the discordant element. During the reading of each article, the elements were organized, coded, categorized, and summarized to allow analysis. At this stage, the extracted data on stressors and associated nursing interventions were listed as shown in Table 1. Analysis of the extracted data was carried out in 2 stages: (1) analysis of the main stressors and associated nursing interventions for each area of care included in the integrative review (neonatal, pediatric, and adult), and (2) overall analysis of all the data extracted on stressors and interventions to draw a complete portrait of the phenomenon under study.
Of the 38 articles included in this integrative review, 18 focused on neonatal care, 9 on pediatric care, and 11 on adult care. Our search of the literature yielded no systematic reviews of family stress in all of these settings. As stated previously, the first stage of analysis identified stressors and nursing interventions for each area of care.
For the neonatal population, the main stressors reported by the families were the alteration of parenting,2,3,9,11,37,39–43 the appearance and behavior of the child,2,3,9,11,14,37,38,42–44,46 the care environment,11,25,38,42,44,46 and communication with health care staff.40,44,46 These stressors are linked to the most frequently used measure of parental stress, the Parental Stress Scale (PSS): NICU.35 This scale consists of a series of questions addressing the various stressors that can be experienced by parents, namely change in the parental role, the appearance and behavior of the child, and the care environment. For these stressors, the main proposed nursing interventions are interrelated and complementary. The interventions suggested in the studies of neonatal care focused on strategies to promote parental involvement,9,14,40,43 which were aimed at supporting the development of parenting skills and parent-child attachment. For example, Busse et al39 suggested collaborating with parents to develop visiting habits that favor parent-child attachment. Other interventions involved fostering communication with parents,2,3,37,39,40,46 taking into account the stress factors present.3,11,24,31,42,44 For instance, Akkoyun and Arslan37 suggested providing support to mothers by giving them information. Finally, other recommended interventions involved encouraging parents to use social support during this experience to enable them to become actively involved as parents.2,3,25,38,40,43,45 As an example, Alkozei et al2 suggested encouraging the use of social services to facilitate parents’ access to the child when they live far away from the NICU.
For the PICU population, the main stressors identified by the families were similar to those found in the NICU population. These included the alteration of parenting,8,12,17,18,20,47 the appearance and behavior of the child,1,12,16–18,20 the care environment,1,16–18,20 and communication with the health care staff.17 These stressors are linked to the PSS: PICU.35 This measurement tool is similar to the PSS: NICU, which was adapted from the PSS: PICU. The PSS: PICU enables measurement of the level of perceived stress according to the stressors present, namely the child’s appearance, sights and sounds, alteration in parenting role, behaviors and emotional responses, staff behavior, and communication with the staff.
The interventions that have been suggested to help family members cope with these stressors aim to foster parental involvement.12,16,18,20 For example, Lisanti et al12 suggested encouraging mothers to become actively involved in their child’s care by teaching them to carry out simple procedures. The interventions also focused on the development of a visiting schedule for parents to enable them to be present in the ICU at appropriate times and rest at other times.8,18 As an example, Smith et al18 suggested allowing parents to be present on the unit at any time as well as promoting self-care by explaining to parents the importance of relaxation. Stress-reducing interventions also emphasized the importance of providing information needed by parents and enhancing communication with them.1,8,12,16,18,47 For instance, Dahav and Sjöström-Strand47 suggested giving the parents an opportunity to ask questions and to verbally process the experience of the PICU.
For the adult intensive care population, stressors were related to the changes experienced by the family,5,7,28,48,50 gaps in communication,15,49,50,54 and access to resources.28,50–52 Changes experienced by the family refer to changes in family dynamics as well as in the appearance of the family member and the environment around them. Communication gaps include difficulties in communicating with health care and medical staff members and inadequate information, whereas problems with access to resources point to difficulties in accessing personnel and support. The main interventions proposed for these stressors are promoting the family’s involvement in care and decision-making5,7,48,53 and providing required information and support according to the family’s specific needs.15,49–53 For example, to enhance family members’ involvement, Blom et al5 suggested collaborating with the family regarding direct care and decision-making. To improve the provision of information, Eggenberger and Nelms50 suggested explaining the specific aspects of the ICU environment to the family, including invasive technology and the patient’s condition. In addition, Martinez et al52 suggested including a clinical nurse specialist and a social worker in the interdisciplinary team to better serve the family and enhance their understanding of the situation.
The second phase of analysis focused on stressors experienced by families in all 3 areas of care. The results of the second phase of analysis are summarized in Table 2. The 4 overall significant stressors were a change in parental role or in family dynamics, the appearance and behavior of the patient, the care setting, and communication and counseling with the health care staff. Changes in parental role or in family dynamics refer to changes in the relationship of family members with the patient in the context of hospitalization in an ICU. Family members often do not know how to adapt to this role change or how to take care of the patient in the new context, which may increase their stress.5,9,12,37,53 Their relationship with the patient as known or desired is significantly altered by the intensive care context, forcing them to adapt. The appearance and behavior of the patient are altered during the ICU stay, which may lead to increased stress among family members, possibly related to misunderstandings of the patient’s condition. The care setting is a highly specialized environment filled with unfamiliar medical equipment and staff members, leading to increased stress for family members who are not accustomed to it. The multiple care interventions received by the patient in intensive care, which family members may not understand, add to the stress of the care environment. Communication and counseling with the health care staff may be stressful for family members who experience difficulties communicating effectively with caregivers and obtaining answers to their specific and general questions about the care situation of their relative. Nurses who work with patients receiving intensive care in NICUs, PICUs, or adult ICUs must therefore evaluate each family member to identify the presence of these stressors and implement appropriate stress-reducing interventions.
Nursing interventions should focus on valuing the role of family members in the care of the hospitalized patient, improving communication, and providing accurate information. To reduce stress related to a change in parental role or in family dynamics, nurses should allow family members to be present at any time at the patient’s bedside and on the unit.7,18,43 Nurses should ensure that family members feel welcome, and, if possible, the patient’s room should include a space for family members to spend time comfortably. In addition, nurses should encourage family members to be involved in patient care and decision-making. Family members should be consulted about care interventions and included in the decision-making process. They should be encouraged to participate in medical rounds to increase their involvement in decision-making. They can be taught to carry out simple interventions to participate in patient care. To reduce family members’ stress related to the appearance and behavior of the patient, nurses should provide information about specific changes observed and encourage asking questions about them. To reduce stress related to the care setting, nurses should take time to explain the specific features of the setting, providing reassurance that it is normal for family members to require clarification and repetition of the information provided. Finally, to reduce stress related to communication and counseling with the health care staff, nurses should establish a communication channel with family members and adapt information to their level of stress and ability to understand the situation. They should systematically evaluate family members’ level of knowledge in order to provide pertinent information. They should clarify with family members how, when, and to whom they will communicate key information about the patient’s status. They should also determine whether additional information or resources may be helpful for family members and take action to provide them.
The results of this integrative review highlight the major stressors faced by family members of a neonatal, pediatric, or adult intensive care patient. The principal stressors are changes in family dynamics, the appearance and behavior of the patient, the health care environment, and communication with the health care team. The results of this review also identify the multiple nursing interventions that should be implemented in intensive care settings to reduce the stress experienced by family members. Nurses should promote the presence of family members and their involvement in care, provide information about specific features of the patient’s appearance and behavior as well as the care setting, and work to ensure effective communication between family members and the health care staff.
Intensive care nurses should take a family-centered approach in all of their interventions to best support family members of patients receiving intensive care.9,44,53 They should follow up with family members on a daily basis to help them develop coping strategies and identify their needs for support24,28,42,45,52,53 and potential stressors,17,31,44 with consideration given to the family’s particular circumstances and previous experience11,45 as well as the potential impact of the present experience on the family.3,8,20 This approach may make it possible to implement tailored interventions, as needed, that are flexible and accommodate individualized coping strategies. The intensive care nurse is the main point of interaction between the health care team and the family and thus has a crucial role to play in supporting the family through the ICU experience.
The main stressors reported by neonatal families were the alteration of parenting, the appearance and behavior of the child, the care environment, and communication with health care staff.
Although this integrative review included a large number of studies, certain limitations are evident. First, some of the articles analyzed do not address in detail the specific role of the nurse in relation to family stressors. In some cases, the proposed interventions are rather general.1,11,24,38,41,48,51,52,54 For example, Koliouli et al11 suggested considering fathers’ life experience in efforts to reduce their stress. Also, several articles do not provide a specific definition of the family,37,38,41–43,46,47,49 and some do not describe the families involved (eg, inclusion of stepfamilies, adoptive families, and families with parents of the same sex).37,38,41–43,46,47,49 In addition, the measurement of stressors was not performed at the same time in all included studies. In some studies stressors were measured on the patient’s admission,28,38,41,43 whereas in others stressors were measured later in the patient’s hospitalization.1,37,46,47,49 Although this is a limitation, the identified stressors were similar no matter when they were measured, highlighting the importance of implementing nursing interventions to reduce stress in family members throughout their relative’s period of hospitalization.
The studies conducted in NICUs varied widely in terms of inclusion criteria and measurement times. Some studies involved premature infants with low gestational age,3,14,24,40,45 others focused on those with a higher gestational age,9 and still others included infants of various gestational ages.2,11,21,25,44 This is an important consideration because the infant’s gestational age may influence the stress that parents experience.52 Also, several studies involving neonates or children included only mothers, leading to proposed nursing interventions for only the mother and not any other family members.2,12,14,24,31,38,44
Studies on parental stress in PICUs were few and far between. No meta-analyses or systematic reviews were found on the subject, and many of the studies identified were conducted in developing countries.1,16,20,31,33 This is an important consideration because sociodemographic factors such as religious or cultural beliefs and socioeconomic status can influence the ICU experience.
Finally, although we found many articles on family stress in adult ICUs, they were not very diversified. Most of these studies involved medical and surgical ICUs, with very few focusing on cardiac, trauma, and burn ICUs. Moreover, almost all of the studies were conducted in North America and Europe, and they had many similarities in terms of conclusions and recommendations. Because sociodemographic factors may influence the ICU experience of family members, this lack of diversity is an important limitation.
Finally, the articles included in this integrative review do not address family stress after the ICU hospitalization. For example, does the stress felt by family members continue over time or fade as soon as the patient is discharged from the ICU? This is an interesting question, especially given the identification of the phenomenon of post–intensive care syndrome in family members described earlier.29 Thus, the identification of stressors for family members during the patient’s ICU hospitalization may lead to the identification of interventions to reduce the incidence of family post–intensive care syndrome.55
The nursing interventions identified in this integrative review are in line with the guidelines for family-centered care in the neonatal, pediatric, and adult ICU.30 In addition to supporting those guidelines, this review adds to the scientific literature in the field of family stress and nursing interventions. As mentioned by Davidson et al,30 who identified the interventions to be included in the guidelines, much research remains to be done to identify the most effective interventions to improve the family’s experience of intensive care.
This integrative review identified several nursing interventions to help involve patients’ families in intensive care, increase family members’ satisfaction with the ICU experience, and reduce their stress related to having a relative hospitalized in the ICU. Integrating the family into intensive care may take many forms. Nurses must be aware of these interventions and be ready to implement them when needed. We found no previous studies that included all intensive care populations—neonatal, pediatric, and adult—in the evaluation of stressors for family members. Our analysis provides a global perspective of the nurse’s role in reducing family stress related to a patient’s ICU stay. In order to implement relevant interventions, nurses must have access to a tool to systematically and effectively evaluate family members’ level of stress and principal stressors. Nurses in all types of ICUs should also be aware of resources that could help the family and personnel who may be consulted as needed, such as intensive care clinical counselors, social workers, and chaplains.
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To learn more about reducing stress in family members of critically ill patients, read “Stress Management Intervention to Prevent Post– Intensive Care Syndrome–Family in Patients’ Spouses” by Cairns et al in the American Journal of Critical Care, 2019;28(6):471-476. Available at www.ajcconline.org.