Needs of family members of patients admitted to a university hospital critical care unit, Izmir Turkey: comparison of nurse and family perceptions

Introduction

The stress level of the relatives of the patients who are admitted to Intensive Care Unit (ICU) is quite high due to serious and unstable conditions of their patients (Khoshnodi, Masouleh & Seyed Fazelpour, 2017; Al Ghabeesh et al., 2014). Moreover, as these patients are mostly unable to communicate due to sedation, mechanical ventilation, confusion, and coma, their family members are asked to make treatment decisions on the patient’s behalf (Khatri Chhetri & Thulung, 2018). Procedures such as tracheotomy, operation consent, and transfer to the service can become very serious sources of conflict with the health care professionals at the point where the patient relatives have all decision-making rights. ICU nurses are in close contact with patients and their families, so they can support family members to overcome this process (Al Ghabeesh et al., 2014). In general, nursing practice plays a key role in the hospital setting. However, ICUs, where confusion and uncertainty prevail, are quite dynamic environments for nurse. This necessitates taking, fast and correct decisions. (Mendonca & Warren, 1998). Duties expected from a nurse under intensive care conditions may limit their ability to respond and support the needs of patient families when caring for intensive care patients (Hetl et al., 2018). The negligence contradicts with the holistic care approach, which is one of the professional features of the profession. Family participation, which is at the center of the holistic care approach, is an important component of the patient’s treatment process (Khatri Chhetri & Thulung, 2018; Al-Mutair et al., 2013). Because the family effect is an important component in the patient’s response to treatment, and nurses are medical personnel who best meet the emotional and social needs of families having patients treated in intensive care (Hetl et al., 2018). Organizational factors, work environment, nursing culture and the situation of the family affect the provision of family-centered services of nurses (McAndrew et al., 2020). Considering that patient-centered care is moving towards family-centered care in the provision of nursing services, it is very important to assess the needs of inpatient families, especially in intensive care units (Khoshnodi, Masouleh & Seyed Fazelpour, 2017).

Family members may experience extreme stress and anxiety, feel helpless and unable to cope with this situation (Khatri Chhetri & Thulung, 2018). Fear of death of their loved one, uncertainty about prognosis, financial concerns, changes in family roles, limited access to the critical care environment trigger feelings of shock, anger, denial, and despair within 72 h after admission to the ICU. They may even lead to feelings of guilt and depression in some cases (Azoulay et al., 2005; Bijttebier, Vanoost & Delva D. Ferdinande P. Frans, 2001).

Correct assessment of their needs is one of the first steps in providing appropriate health care to ICU patients and their families. Leske (1986) first described needs of the families of patients in critical care units under five dimensions; (1) support, (2) comfort, (3) information, (4) proximity, and (5) assurance (Molter, 1979; Leske, 1991). Nurses provide or coordinate requirements such as fulfilling the family’s need for in these five dimensions through bedside family/patient interactions. Problems in understanding these family needs may make it difficult to cope with the crisis, which may eventually affect the patient’s response to treatment (Maxwell, Stuenkel & Saylor, 2007).

Examining family members ’and nurses’ perceptions of the needs of inpatient families in the ICU can provide an overview of the improvement of practices in this unit. Despite increasing evidence obtained from studies conducted in this area, the number of studies conducted in the Turkish society in the literature is very low (Elay et al., 2020; Ozbayira, Tasdemir & Ozsekera, 2014).

The socio-cultural and geographic contexts responsible for the diversity of family needs of ICU patients can be very important factors, so evidence from different cultures of the world is important (Alsharari, 2019). The objective of this study is to compare the perceptions of nurses and families on the needs of the relatives of the patients in a university hospital Intensive Care Unit (ICU).

Methods

Results

The sociodemographic characteristics of the relatives and nurses are given in Table 1. Half of the members of patient families participated in the study were women, three quarters of them are in upper secondary education, six out of ten were children of ICU patients (Table 1). Overall, 6.6% of the relatives of the patients reported that they were in critical care units before and 45.1% of the relatives were previously admitted to ICU. When the patient characteristics were examined 60.6% of patients were male and 61.1% were over 65 years of age. Reasons for hospitalization among critical care patients were chronic obstructive pulmonary disease and post-operative care.

The mean age of the nurses was 31,9 ± 6,1 and %81,5 was female. Nurses with critical care experience of five years or more accounted for 35.2%. While 7.4% (n = 4) of the nurses reported that they were previously admitted to intensive care, 68.5% (n = 37) stated that at least one of their relatives was in an ICU.

A comparison of the mean item scores of patient families and nurses based on their answers to CFFNI items is shown in Table 2. Patient relatives gave the highest rank scores to items “To be assured the best care possible is being given to the patient,” “To be called at home about changes in the patient’s condition”, and “To be assured it is alright to leave the hospital for a while”. The needs ranked in the first and third places by the family members were equally important for the nurses. On the other hand, the mean score of patient relatives for both items were higher than that of nurses at a statistically significant level. The other two items perceived among the most important five needs for patient relatives were “To feel that the hospital personnel care about the patient” and “To know specific facts concerning the patient’s progress”. As for the nurses’ perception of needs of patient relatives, the items ranked among the top five except for the two items cited above were “To have questions answered honestly” (second), “To know exactly what is being done to the patient” (fourth), and “To feel accepted by the hospital personnel” (fifth). Six of the ten most important needs ranked by patient relatives were also perceived among the top ten by nurses. Of the top ten needs perceived by relatives six items were related to assurance/proximity and four to information. Of the top ten needs of family members perceived by nurses seven items were related to assurance/proximity, two to comfort/support and one to information.

All the items in the last 10 among the needs of patient relatives were related to comfort and support subtitles. Also, there was no statistically significant difference between mean scores of family members and nurses in nine of these items.

There were statistically significant differences in 26 items in terms of scores provided by nurses and family members. Among these items, in 24 items that demonstrated significant differences, the mean scores of family members were higher. The mean scores of nurses were found to be higher in “To be alone at any time” and “To be told about chaplain services” items where a significant difference existed between the scores of patient families and nurses (Table 2).

The mean score on assurance/proximity subscale was ranked first by both family members and nurses. No statistical significance existed between family members’ and nurses’perception of support/comfort needs. In terms of assurance/proximity and information, family members’ mean perceptions of needs and mean total scale scores were found to be significantly higher than those of nurses (Table 3).

The experience of nurses when their own relatives have been in ICUs has been evaluated. A statistically significant difference in scale between nurses who had and had no experience of having a relative staying in intensive care was found for only one article. While nurses (2,51 ± 0,90) who had experience of having a relative staying in intensive care unit gave higher score for “To talk to the same nurse every day” article nurses (1,94 ± 0,85) having no such experience gave lower score (p:0.035).

Discussion

This study evaluates the degree of coherence between the perceptions of the ICU nurses who assume the most important responsibility for fulfilling the needs of the patients as well as their families in ICU and the needs of patient relatives. It is very important to identify the difference between the perceptions of nurses and the needs of patients’ relatives in the provision of family-centered nursing services in intensive care units.

Coherent with the literature, the results of this study showed that there are similarities and differences in terms of family members and nurses’ perceived need for patient relatives (Maxwell, Stuenkel & Saylor, 2007; Moggai, Biagi & Pompei, 2005; Hinkle & Fitzpatrick, 2011; Alnajjar & Elarousy, 2017). Family scores were higher than those of nurses. This result is supported by the literature, which reports that nurses cannot adequately foresee the level of family needs and shows that the total quality of the services provided to family members of critical care patients is an area that should be improved (Gundo et al., 2014).

Assurance and proximity subscales in the CCFNI developed by Leske (1991), which reflect the need of the family to be physically and emotionally close to their critically ill family members, and have confidence in the patient’s future, were rephrased under a single title as assurance/proximity in the Turkish version of the scale (Büyükçoban, Ciceklioglu & Demiral Yılmaz N. Civaner, 2015). Although the mean assurance/proximity subscale of family members was higher than that of nurses, it was ranked as the most important need in both groups. The compassionate and honest attitude of intensive care nurses can play an important role in meeting family members’ e assurance and proximity need (Maxwell, Stuenkel & Saylor, 2007). Therefore, it is very important that the nurses in our work group be fully aware of the needs of family members in terms of assurance/proximity needs.

In many studies, assurance dimension was perceived as the highest priority need for both groups (Gundo et al., 2014; Intessar, 2019). In a literature review study, on the needs of family members, the assurance was found to be the top-ranked need regardless of the geographical region (Padilla, 2014). Furthermore, in the same study, the assurance subscale item “To ensure that the patient is being given the best possible care”, which is determined as the most important need for North American families, was ranked eleventh in Asian families (Padilla, 2014). In our study, this was the item with the highest score both by nurses and family members. This item was ranked among the top five needs by both nurses and family members in comparative studies conducted in the US (Hinkle & Fitzpatrick, 2011), Belgium (Bijttebier, Vanoost & Delva D. Ferdinande P. Frans, 2001), Egypt (Intessar, 2019), Turkey (Elay et al., 2020) and Iran (Shorofi et al., 2016).

Although the mean score of family members was higher, the second most important need dimension reported by both groups was ‘information’. In addition, the most basic needs of patient’s relatives, such as knowing what was done to the patient, what kind of treatment was applied and why these treatments were performed and obtaining information about the changes in the patient’s condition were not considered as priority by nurses. Moreover, the article titled “To be called at home about changes in the patient’s condition” regarding information dimension was in the second and 12th rank for families and nurses, respectively. This finding showed that patients’ need for information was not adequately perceived by nurses as described in the literature (Bijttebier, Vanoost & Delva D. Ferdinande P. Frans, 2001; Al-Mutair et al., 2014). In Turkey, especially information about treatment processes is mostly covered by doctors (Ozbayira, Tasdemir & Ozsekera, 2014; Ünver, 2003), which may have affected the perception of nurses.

Providing adequate information about the patient’s condition, treatment and prognosis also fulfills the needs of families to trust the health system as well as healthcare employees (Akhlak & Shdaifat, 2016). To fulfill patient families’, need for information, structured in-depth information tours rather than quick bedside conferences should be made, and nurses should be encouraged to get more actively involved in this process. Considering that this information to be provided to family members may be time consuming, there should be a sufficient number of personnel especially during visiting hours (Bijttebier, Vanoost & Delva D. Ferdinande P. Frans, 2001). In a study conducted in Turkey it is also found that ICU nurses have problems communicating with the patient’s family due to excessive workload, role conflict and uncertainty, environmental and institutional barriers (Çınar, Olgun & Koyuncu, 2005).

The “support and comfort” dimension of patient relatives’ needs was perceived as the least important factor by both nurses and patients as described in the literature (Padilla, 2014; Akhlak & Shdaifat, 2016; Bijttebier, Vanoost & Delva D. Ferdinande P. Frans, 2001). In the initial days of emotional distress and continuous search for information, it seems logical that comfort factors have a low priority (Bijttebier, Vanoost & Delva D. Ferdinande P. Frans, 2001).

Considering the fact that the study was performed in single center where the level of education of patient relatives is relatively high, it should be noted that the generalizability of our results to the population in Turkey is limited. However, the present study similar to other studies in different ICUs in Turkey (Elay et al., 2020; Ozbayira, Tasdemir & Ozsekera, 2014) in terms of priority needs of the patients. The low number of nurses that participated in the study should be noted as another limitation.

Conclusion

This study revealed that the most fundamental requirement for both patients and families was assurance and proximity in hospital staff. The second most important factor was the need for information that requires personal communication. However, in both dimensions, the fact that nurses’ scores were lower than those of patient relatives indicates that nurses perceive the needs of patient relatives less than their actual needs.

Our study results support the evidence that Turkish version of CCFNI is a valid tool that allows evaluation of the family’s needs and nurses’ perception on these needs (Büyükçoban, Ciceklioglu & Demiral Yılmaz N. Civaner, 2015). However, as highlighted in the literature, considering the nature of the concepts involving these needs, the results need to be expanded and analyzed in depth using qualitative methods. For the nurses to fulfill such needs of the family members, it is quite important to define and assess these needs accurately. Family-centered care in the intensive care unit is defined as the assurance, emotional support, decision-making support provided by the nurse and acceptance of the family contributions to care (McAndrew et al., 2020).

In this framework, new strategies such as, flexible visiting hours, improved participation of nurses in ’visiting and “informing” hours and enhancing the quality of information / counseling processes for patient relatives should be addressed (Bijttebier, Vanoost & Delva D. Ferdinande P. Frans, 2001; Padilla, 2014). However, owing to staff shortages and excessive workloads, it makes it difficult for nurses to assume this role. For this reason, the health system as well as health institutions should create organizational conditions to support nurses (Gundo et al., 2014).

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