Healthcare is a multifaceted mission that requires a comprehensive approach to its delivery. Medical teams are expected to excel at a range of crucial tasks that are not limited to the immediate provision of physical care. In addition to diagnosis, treatment, and medication, these teams need to address the mental aspect of the situation. Any medical case is inevitably associated with concerns and anxiety, which are to be mitigated by the efforts of the medical unit, especially nurses. This falls under the principles of patient-centered care that is prioritized by the contemporary experts, researchers, policy-makers, and practitioners. Evidently, most of these efforts are targeted at the patients themselves in order to eliminate any doubts and build rapport. Nevertheless, critical situations emerge, in which the patient’s agency is compromised. Such circumstances usually come from accidents and other tragic events that put patients in a critical condition. Combined with the magnitude of the situation, the uncertainty regarding the individual’s recovery accumulates unprecedented stress among their family members. In this regard, one of the objectives of care is to ensure their mental comfort to prevent further complications
This type of stress is caused by the staggering development of the critical situation, as well as the general seriousness of the condition. Family members of to the intensive care unit (ICU) patients have certain unmet needs, which require attention from healthcare professionals and administration (Alsharari, 2019). These needs are related to the pursuit of comfort and reassurance regarding the positive outcome of the situation. Furthermore, the situation can be further complicated by sociodemographic variables that influence family member needs (Arofiati et al., 2020). For example, the overall stressful situation is further aggravated by the prospects of expensive treatment and recovery procedures in less fortunate household. Patients in the ICU experience troubled communication with medical teams and their relatives, which becomes another cause for anxiety and stress. These effects are present not only during the treatment but (Alsharari, 2012). Accordingly, exploring the needs of family members in ICU patient cases is integral to overcoming the challenges that are associated with this context.
Recent studies have shown that family members of patients admitted to ICU have elevated levels of needs in terms of support, information, comfort, and proximity. This data provides a foundation, upon which further efforts to Understanding the concept of family-centered care as an integral part of the healthcare process and management of the well-being of critical care patients is important in making further progress in this field. The sudden separation of the hospitalized critically ill relative from the family negatively affects the well-being of all parties involved, as well as the projected outcome of the situation. Therefore, the needs of critically ill patients’ family members are to be addressed and eliminated in order to have a positive influence on clinical outcomes.
In critical care units, admission to critical care is stressful and often causes mental trauma to both patients and their families. The ability to cope with such stress is limited among different individuals. Under these circumstances, the family’s stability and mental comfort decline below optimal levels. This research seeks to highlight the need for considering the well-being and comfort of the family in intensive care plans. The dimension of support includes the behaviors that support the family during critical illness in order to reduce anxiety. The dimension of information reflects information given to the family members concerning the critically ill patient. The dimension of comfort encompasses the personal comfort needs of the family of the critically ill such as physical rest. Proximity addresses being able to be beside the patient, while the dimension of assurance reflects hope about patient outcomes. (Almagharbeh et al., 2019). An effective combination of all four dimensions is expected to yield major improvements in intensive care outcomes.
Aims and Objectives
The aim of this research is to determine the needs of family members of critical care patients, as well as gaps that may exists between the identified needs of family members visiting critical care patients and their perceptions of whether the needs are met.
In order to fulfill the aim of the research, the objectives have been formulated as follows:
- Determine the context of critical patient care
- Determine the prevalent needs of critical patients’ family members
- Categorize the needs of critical patients’ family members by dimension of response
- Determine whether critical patients’ family members consider their needs met in an ICU setting.
In light of the specified aim and objectives, the research relies on a set of research questions that guide all activities within its scope:
- RQ-1: What are the main critically ill patients family members’ needs in the UAE?
- RQ-2: What is the impact of the critical illness patient on family members?
Review of the Literature
This chapter synthesizes the perspective on the subject matter that is observed within the contemporary body of literature. The proposed categorization is expected to reflect the complexity of the topic. First of all, it is important to acquire a full understanding of the context that is critical patient care. Next, the role of family needs to be described, as it is integral to the social aspect of the treatment, affecting the ultimate clinical outcome. Third, the contemporary literary perspective on the needs of families of critical care unit patients is explored. This way, the problem in its entirety is viewed from all pertinent angles, outlining the central concepts that are associated with it. In order to ensure the validity of the knowledge, only relevant sources have been selected. As per the inclusion criteria, they were to published as recently as 2015 or later to reflect the contemporary state of research on the subject matter.
Specificity of Critically Ill Patient Care
Critical care is a highly delicate sphere with major concerns associated with the process. As stated by Lewis et al. (2018), “during intensive care unit (ICU) admission, patients and their carers experience physical and psychological stressors that may result in psychological conditions including anxiety, depression, and post‐traumatic stress disorder” (p. 1). In other words, this setting is associated with immense psychological challenges that often entail serious repercussions for all parties. Interestingly, Lewis et al. (2018) include carers in their discussion, thus confirming the importance of considering family members as parts of the process. Indeed, one of the defining characteristics of most critical conditions is the patient’s agency being compromised (Johnson et al., 2016). In severe cases, patient may be non-responsive, which further impedes communication (Mclave et al., 2016). For family members, this lack of connection is likely to cause elevated anxiety and other psychological difficulties (Urden et al., 2017). They feel detached from the process, and normal medical procedures rarely extend beyond mere supply of factual information as the situation progresses. This is explained by the specificity of the clinical setting of critical care.
ICUs work with patients who experience serious injuries that are usually life-threatening. There are many possible causes of such conditions, most of which are associated with uncertainty regarding the final outcome (Ma et al., 2018). For example, some patients require critical care as a result of an automobile accident that instils major injuries. On the other hand, others enter such units in the fallout of other medical conditions that deteriorate or following a surgery (Madden & Speed, 2017; De Georgia et al., 2015). In the vast majority of the cases, the patient’s survival is not guaranteed, which imposes additional stress on the all actors involved in the process. Even for the most experienced medical teams, the outcome of each critical case is prone to indeterminacy (Lee et al., 2019; Moss et al., 2016). In simpler terms, doctors and nurses make efforts to save the life of each patient who goes into an ICU. Under such circumstances, their tendency to avoid extensive consultations with the family members can be understood. Nevertheless, the lack of attention toward the needs of the relatives is likely to cause negative consequences in the form of mental pressure and psychological complications.
As described above, the exact causes that force patients to be admitted into an intensive care unit may vary greatly. Nevertheless, they are united by several common aspects that are present in the majority of the cases. First, the admission tends to be an unexpected development from the perspective of the patient’s family (Pfrimmer et al., 2017). Such stunning occurrences are stressful on their own, which is why the entry conditions of each case are already complicated. When the normality is disrupted, people are likely to develop doubts and concerns with regards to the situation. Next, the second aspect factors into it, which is the seriousness of the condition (Jarrett, 2017). In most cases, the illness or injury is considerably severe to cause a hospitalization into the ICU.
Many of these conditions are associated with pain and suffering of the patient. As a result, their family members experience additional stress and anxiety that originates from the empathy that is exhibited toward their beloved ones. Finally, the future is not secured, because indeterminacy persists throughout the treatment process (Urden et al., 2017; Marra et al., 2017). The situation may take a dire turn, and it is natural for experienced medical professionals to avoid promises in such cases. For families that seek consolation and reassurance, these circumstances contribute to the overall severity of the stress, anxiety, and subsequent complications. Ultimately, these factors sufficiently explain the struggle of the relatives who visit their family members in a critical care unit.
The Role of Family in Care
In most healthcare settings, the role of patient-centered care has acquired a status of paramount importance. For Tzelepis et al. (2015), this paradigm is the leading determinant of the high quality of care that is prioritized by modern standards. This idea usually refers to a model of care, in which the emphasis is laid on the needs, values, and desires of the patient. Historically, medical decisions were guided by the professional knowledge and expertise of the healthcare team. However, the role of patient agency has been increased over the past decades, eventually causing the emergence of patient-centered care as a dominant paradigm. Within its framework, the importance of quality communication is highlighted by experts, researchers, and practitioners. In fact, the ability to build rapport with the patient and create the conditions under which they can fully execute their agency is one of the key competencies of modern nursing (Rubin et al., 2015). As can be inferred from the investigation of literature, the issue of communication and needs being met tends to be limited to the relationship between the patient and the medical team (Tulsky et al., 2017; Frow et al., 2016). In other words, the family is rarely included in this equation.
On the other hand, any individual lives in their own community, experiencing strong social bonds. Most of them have families, either by blood or by choice, and these people equally worry about the outcome of the situation (Rothrock, 2018). Yet, the focus of the patient-centered remains on the titular patient, which is reasonable. Nevertheless, the complete exclusion of the family members from communication is detrimental to the process, as it undermines the rapport between the two sides of care delivery (Chong et al., 2015). It is natural for the relatives to want to exercise at least some degree of control over the situation. In the case of critical care unit admission, this desire is multiplied, affected by the severity of the illness or injury. The lack of agency is a critical situation is an excruciating experience that causes major stress, further aggravating the mental state of the carers (Davis et al., 2015). Therefore, they will respond positively to substantial attempts to have them involved in communication and decision-making.
In fact, modern scholars observe the positive impact of family members’ input into the process of healthcare delivery. Chong et al. (2015) confirm that patient autonomy usually implies a desire to confer with the family members and ensure their comfort at any stage of the treatment. Their empirical research suggests that, when given an opportunity, family members are engaged in 65% of initial treatment decisions. This confirms that they are naturally prone to desire involvement in such procedures, being discontent with remaining on the margins. Furthermore, Jazieh et al. (2018) insist that family involvement contributes positively to patient outcomes. In part, this effect is ensured by the better level of mental comfort that is experienced by all parties. Under the circumstances of critical care, this process is impeded by the seriousness of the condition. However, when the patient is temporarily non-responsive, the importance of family engagement is only going to increase. Following a possible recovery, the patient may react negatively if they learn that their relatives were excluded from the communication (Mackie et al., 2019). Therefore, determining and meeting family members’ needs is an important step toward improving the quality of critical care.
Family Needs in Critically Ill Patient Care
The needs of the families of the patients admitted into critical care units are to be determined and addressed for the improvement of clinical outcomes. The examination of the contemporary body of academic literature reveals that there four leading categories of needs that exist in this context. First of all, there is the dimension of support, which is of utmost importance in such situations (Arofiati et al., 2020; Mackie et al., 2019). Critical conditions are associated with uncertain outcomes and high probability of lethality. Furthermore, in these unfortunate scenarios, people are likely to spiral and consider the worst possible outcomes (Liput et al., 2016). From this perspective, the support is mostly expected to be mental in nature. Family members are to be provided relevant facts that can mitigate their concerns and prevent unnecessary pessimism in their reasoning.
Next, the dimension of information is actively discussed by most researchers who address the subject matter. As determined above, the families of most patients naturally desire involvement in the process of decision-making. This desire is closely related to the ability to receive timely and relevant information on the patient’s condition and treatment progress, as well as the prognosis (Liput et al., 2016; Calabro et al., 2018). In critical care units, the work process is highly intense, as most cases tend to develop rapidly. Consequently, family members are often kept uninformed of the situation until a milestone is passed and the medical team finally has time to engage in communication. However, unless this interaction is regular and transparent, relatives may develop a lack of trust in the actions and word of medical professionals. Therefore, the primary need is to receive information in a timely and open manner, which opens the opportunity to feel engaged.
Third, the dimension of comfort represents another multi-faceted aspect of the discussed context. These needs are exhibited on two levels, which are mental and physical ones. For the former, the primary need to be at peace, eliminating stress and anxiety to the maximum extent possible (Candy et al., 2015; Liput et al., 2016; Arofiati et al., 2020). This dimension intersects with the needs for support in that nurses are expect to make genuine attempts to mitigate the fears of the patients’ relatives and prevent them from spiraling. At the same time, physical comfort is equally important to maintain high spirits. During the first days following the hospitalization, most family members remain on edge and stay at the hospital for as long as possible (Brown et al., 2015). This is combined with the avoidance of sleeping, eating, and self-care. However, these are basic needs that cannot be ignored in a serious situation.
Finally, the direction of proximity is the fourth major type of needs identified in the contemporary literature. The prospects of a possible loss of a family member are daunting for the relatives (Frampton et al., 2017). Especially in smaller families, this experience is often accompanied by a sense of alienation and related fears. In this context, proximity implies helping patients’ family member realize that they are not left alone in a dire situation (Whitgob et al., 2016; Arofiati et al., 2020). Therefore, medical teams cannot afford to remain distant from the patients’ relatives, as this need not being met is likely to contribute to the overall stress.
The present chapter focuses on the methodological aspect of the study. More specifically, it outlines the selected design that has informed the procedures undertaken with regards to the study’s aims and objectives. Next, the participants of the investigation are presented from the perspective of sampling description, setting characteristics, and rationale for both aspects. In addition, the instruments that have been employed in the process of completing this research are equally discussed. The methods of analysis are provided for further understanding, combined with the coverage of the ethical aspect of the project.
In terms of design, this research follows a descriptive cross-sectional model, accumulating empirical data over the course of four months. The collection of the data is completed with a standardized survey tool distributed to selected patients’ family members in Intensive Care Unit. The aim of this design is to understand the needs that are exhibited by this group in an actual environment of critical care for further determination of possible gaps between the desired situation and the actual state of the research problem.
Setting and Sampling
The collection of the data has been completed in Critical Care Units across hospitals in the United Arab Emirates that are authorized by the Ministry of Health and Prevention. The project encompasses several regions of the country that are Sharjah, Dubai, Umm Al Quwain, and Ras-Al-Khaimah. The sampling comprises the family members of the patients who undergo treatment in Critical Care Units in the following institutions:
- Al Qasimi hospital, Sharjah;
- Al Kuwait hospital, Sharjah;
- Albaraha, Dubai;
- Umm Al Quwain hospital;
- Saqr Hospital, Ras-Al-Khaimah.
The sampling procedures have included adult family members of critical care unit patients aged 18 or more, able to read and write in Arabic, having a first-degree relationship with the patient, and having visited the hospitalized relative within 48-72 post-hospitalization. It is theorized that this period suffices to form the needs that are pertinent to the subject matter. All the individuals who do not comply with the criteria described above are not eligible for participation.
The study utilizes two key instruments in obtaining the required data. First, a short socio-demographic questionnaire is provided about family member’ age, gender, educational level, previous hospital experience, the relationship to the patient, perceived health condition of the patient and type of hospital. The second tool is the Critical Care Family Needs Inventory (CCFNI) questionnaire originally developed by Melter and Lieske consisting of 45 need statements within 5 subscales. Internal consistency reliability for the total questionnaire using Cronbach’s alpha ranged from 0.88 to 0.98. Items in the CCFNI are scored on a Likert scale from (1, not important) to (4, very important) with higher scores indicating greater importance of the need being measured. The modified and translated CCFNI questionnaire to Arabic by Dr. Heikmat is employed for the purpose of this study. Permissions to use the CCFNI were obtained from the original and translating authors. A pilot test was conducted with 10% of the sample size to ensure its readability and clarity. Besides, the questionnaire has been supported to be valid in several previous studies both in English and Arabic.
All the responses obtained from the participants have been reviewed for completeness. Tools with incomplete answers were disregarded, and the response rate was calculated based on the completed surveys. As a next stage, the data was entered in the software for statistical analysis. Descriptive statistical analysis is used to determine the frequencies on the compliance and barrier items. Inferential statistics test the association of the demographic variables and barriers with the compliance score.
- An ethical approval for this study had been obtained from the university’s research board before initiation of the study.
- A formal letter was sent to hospitals directors to obtain their official approval.
- Healthcare workers and patient relatives were not exposed to any harm
- Data has been handled exclusively by the authorized people.
- Each participant has been informed of the project’s aims, objectives, and expectations, providing their informed consent.
To be added upon completing the remaining procedures.
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