Abstract
Background
Admission to an intensive care unit (ICU) is considered a mental crisis for patients and their families as they are unprepared for such a stressful and difficult situation. Hence, the objectives of this study are to assess the psychosocial needs of patient family members in the ICU in various dimensions such as assurance, proximity, information, support, and comfort; and to associate their psychosocial needs with their socio-demographic variables and clinical variables of the patient.
Methods
This was a cross-sectional analytical study conducted between December 2021 and January 2022 among 188 family members of patients admitted to the ICU using a convenience sampling technique in a tertiary hospital in Puducherry, India. The modified Critical Care Family Needs Inventory (CCFNI) questionnaire was administered to all consenting family members to determine their needs.
Results
The overall most important need among the five dimensions of modified CCFNI scores identified by the family members is the need for assurance (2.71±0.38). Using analysis of variance, statistical significances were found as follows. Education and comfort (F-statistic and P-value): 2.76 (0.029); relationship with the patient and assurance: 2.61 (0.036); relationship with the patient and support: 2.44 (0.048); level of consciousness and comfort: 4.63 (0.010); ICU visit restriction and assurance: 3.28 (0.022); ICU visit restriction and comfort: 8.08 (<0.001).
The family is the first social institution and represents the physical, mental, social, spiritual, and cultural well-being of its members through its culture, roles, and distinctive structure. A holistic sickness might result from any condition in its component parts. The time when one of the family members is hospitalized is one of the alterations that have an impact on the family system [1].
The critical point gets worse when someone is admitted to the intensive care unit (ICU) because it can be stressful followed by pain, physiological and emotional performance complications, lack of sleep, restricted movement, and visit limitation [2]. Admission to an ICU is considered a mental crisis for patients and their families as they are unprepared for such a stressful and difficult situation. It can also hamper family integrity and change the roles and responsibilities of family members [3]. The families and friends of the admitted patients are further burdened emotionally by the presence of an array of equipment, intravenous lines, medications, and sounds [4].
In a longitudinal study, up to 43% of family members of patients who had been in an ICU were found to have serious depression symptoms one year later. While they typically decline over time, in 16% of family members, they remained high [5]. Likewise, the occurrence of post-traumatic stress in the family members stands between 13% and 56%, and it is higher in the family members of adult patients [6].
Clinical recommendations in many nations advise open visiting policies for ICUs since it is thought that patients and their families need this type of access, in accordance with the family-centered care theory. Family members may experience less mental strain and be better able to follow instructions and support the patients with organizational support [4].
Bijttebier et al. [7] addressed that most healthcare professionals are not adequately aware of the particular needs of patients' families and that meeting the needs of family members can improve patients' outcomes. Family members' requirements are diverse, and nurses must be aware of these needs and have the necessary skills to better direct interventions to address these needs. Therefore, assessing the psychosocial needs of ICU patients’ family members becomes a matter of prime importance. A limited number of studies on the psychosocial needs of family members in India have been published, which limits our understanding of the aforementioned needs that are exclusive to this community. Hence, the objectives of this study are to assess the psychosocial needs of patient family members in the ICU in various dimensions such as assurance, proximity, information, support, and comfort; and to associate their psychosocial needs with their socio-demographic variables and clinical variables of the patient to understand better which variables affect their needs the most.
This was a cross-sectional analytical study conducted between December 2021 and January 2022 among family members of patients admitted to the ICU of a 2,400 bedded tertiary hospital in Puducherry, India where investigations and treatment for inpatients or outpatients with monthly income of less than Rs 25,000 are given free of cost. There are a total of 23 ICUs in different blocks and the study was conducted in the 15 permitted ICUs. A convenience sampling technique was used to recruit 188 family members (109 males and 79 females) based on the inclusion criteria such as being over 18 years of age (both patient and family members); related to the patient by blood or marriage; able to read, write or speak Tamil or English; has stayed as attender for more than 2 days; and attendee who has permission (Figure 1).
Ethical approval was granted by the Nursing Research Monitoring Committee (NRMC; No. CON/NRMC/M.Sc./2020/CHN/3) and the Institutional Ethics Committee (IEC; No. CON/IEC/M.Sc./2020/CHN/3). Permission to recruit the participants was sought from the hospital's Medical Superintendent. Participants received an envelope with a participant information sheet outlining the purpose of the study, a form requesting informed consent, and a questionnaire guaranteeing respondent anonymity and confidentiality. This was carried out in the waiting room that is accessible to family members visiting a critically ill patient outside of the ICUs. It took the participants fifteen to twenty minutes to finish the questionnaire. It was advised to participants to address any unclear areas immediately. The participants needed to seal the completed questionnaire inside the given envelope. To maintain confidentiality and anonymity, each completed and sealed questionnaire was put in a designated box.
The Critical Care Family Needs Inventory (CCFNI) was first designed by Molter [8] and Leske [9] and consists of a 45-item self-administered questionnaire with an internal consistency of 0.90 that explains the needs that relatives of ICU patients experience. Items are evaluated on a 4-point Likert scale with subscales for assurance, information, proximity, support, and comfort, ranging from 1 (not important) to 4 (very important). The last question consists of one open-ended question. However, a modified CCFNI is used in this study to suit the current culture of the Indian population after permission was obtained from both authors. It was scaled down and modified to 34 questions as advised by NRMC and IEC. The modified CCFNI consists of five dimensions such as assurance (n=6), proximity (n=6), information (n=5), support (n=10), comfort (n=6), and one open-ended question mentioned as “Other.” Items are evaluated with a 3-point Likert rating scale, ranging from 1 (not important) to 3 (very important) with the same subscales.
The validity of the modified tool (English and Tamil) was obtained from a group of five (5) experts from the Department of Public Health (n=1), Department of Nursing (n=1), and Department of Psychiatry (n=3). In addition, the questionnaire underwent a pilot test among 10 ICU family members before being given to the participant to enhance both its content and construct validity. Sentence structure was changed in the questions to make them more comprehensible in light of the data from the pilot study. To ensure the questionnaire’s reliability, Cronbach’s alpha was used as a measure of internal consistency and was estimated to be 0.92. The results of the internal consistency reliability of the modified CCFNI dimensions in this study were 0.95, 0.92, 0.88, 0.86, and 0.99 for assurance, proximity, information, support, and comfort respectively.
Data were entered into Microsoft Excel, and Stata version 16.0 was used for analysis. The categorical variables and the items under the five dimensions of the modified CCFNI were expressed as frequency with percentage. The five dimensions of modified CCFNI scores were expressed as mean with standard deviation. The association of psychosocial needs was assessed using an independent t-test and one-way analysis of variance. Bonferroni post-hoc analysis was used for comparing the five dimensions and socio-demographic variables of participants with clinical variables of the patient where there was an association. A P-value of <0.05 was deemed statistically significant for all statistical tests, which were run at a 5% level of significance.
The demographic variables of the family members are listed in Table 1. Overall, 76 (40.43%) family members were in the age group of 31–45 years with an average age of 36.71 years, and 109 (57.98%) were males. Also, 72 (38.30%) were either a daughter or a son, who had graduated consisting of 67 (35.64%), followed by 63 (33.51%) having secondary education, skilled workers consisted of 60 (31.91%), and more than half of the family members, 97 (51.60%) were a family of more than 6 members.
Furthermore, 30 patients (15.96%) were admitted to SICU, and 50 patients (26.60%) had cancer. At the time of the study, 106 (56.38%) of the ICU patients were reported by the family members to be conscious, 62 (32.98%) to be semiconscious, and 20 (10.64%) to be unconscious. The number of patients who had been staying in the ICU for less than or equal to 5 days was 79 (42.02%), 61 (32.45%) of the patients were ill for more than 121 days and 90 (47.87%) of the family members stated that visit was allowed as per need-based only. Lastly, more than half of the patients were admitted due to emergency, i.e., 102 (54.26%) as represented in Table 2.
Table 3 shows the five need items with the highest percentage in each dimension indicating that the need is “very important,” which are: “to know specific facts concerning the patient’s progress” with 85.64% (n=161) from the assurance dimension, “to see the patient once or twice a day” with 81.38% (n=153) from proximity dimension, “to know what and why things were done for the patient” with 82.97% (n=156) from information dimension, “to have explanations of the environment before going into the critical care unit for the first time” with 78.19% (n=147) from support dimension, and “to have good food available in the hospital” with 79.79% (n=150) from comfort dimension.
The overall most important need according to the five dimensions of modified CCFNI scores reported by the family members is the need for assurance (2.71±0.38), followed by proximity (2.67±0.33), comfort (2.53±0.47), information (2.49±0.36), and support (2.44±0.35) as shown in Table 4. There are statistical significances between education and comfort dimension: 2.76 (P=0.029), the relationship with the patient and scores of assurance: 2.61 (P=0.036) and support: 2.44 (P=0.048) dimensions, the level of consciousness and comfort dimension: 4.63 (P=0.010), ICU visit restriction (in hours/day) and scores of assurance: 3.28 (P=0.022) and comfort: 8.08 (P<0.001) dimensions as summarized in Table 5.
Post-hoc analysis was run between the relationship with the patient and assurance dimension; we found significance between sister/brother and cousin/uncle/aunty with a mean difference of –0.37 (P=0.022). Between the level of consciousness and comfort dimension; we found significance for semi-conscious and unconscious patients with a mean difference of –0.36 (P=0.009). For ICU visit restriction and assurance dimension; we found significance for as needed and 1 hour of visit restriction with a mean difference of –0.19 (P=0.013). With the comfort dimension; significance was present between as needed and 1 hour of visit restriction with a mean difference of –0.29 (P<0.001). Similarly, significance was seen between as needed and ≥3 hours of visit restriction with a mean difference of –0.52 (P=0.006). These comparisons are given in Table 6. It is known from Table 7 that out of 188 participants, 10 participants had given their additional needs apart from the needs mentioned in the questionnaire which was given as “Other.” It is known from their responses that; their needs mostly point towards comfort and assurance needs.
ICU hospitalization has a significant impact on patients' physical and psychological health, which will alter how well families can cope and how they view the situation [10]. It is also challenging because it puts patients, families, doctors, nurses, and other healthcare staff under a lot of stress. Burnout and posttraumatic stress disorder are frequently linked to critical care. For these reasons, a solid strategic plan is crucial to advance and deliver top-notch care for patients and their families, and to enable the effective use of resources.
The mean age of participants was 36.71 years which was also usually in the range of 33–39 years as compared to other studies [3,11-13], and unlike other studies where there are more female subjects than male; our study has recruited more male subjects. The clinical characteristics of family members were purely assessed by what the researchers anticipated as relevant to the study and as suggested by Shorofi et al [3] which made it impossible to compare with other studies.
The assurance dimension was perceived as the highest priority need in many studies [3-4,11-19]. Therefore, a compassionate and truthful attitude of intensive care nurses can play a vital role in meeting assurance. In addition, despite cultural differences in family duties and responsibilities, it appears that family members frequently sought reassurance regarding the state of their loved one's health.
A study done by Pandey et al. [20] to find out the perception of nurses regarding the family needs of critically ill patients also showed that “to know specific facts concerning the patient’s progress” is the first very important need in the assurance dimension. In the proximity dimension, “to see the patient once or twice a day” was modified from the original question “to see the patient frequently” as patients cannot be seen frequently where more than half of the ICUs in the hospital allow visits as needed. This indicates that an open visit policy is very much needed. Family members want “to know what and why things were done for the patient” in the information dimension. This question is a combination of “to know why things were done for the patient” and “to know exactly what is being done for the patient” from the original questionnaire. It indicates that knowing what things or procedures were done for the patients and the reason behind them is very important for their family members. This is consistent with previous studies done by Alsharari [15] and Pandey et al. [20]. However, “to talk to concerned people about the patient condition” is regarded as the least important in the overall questionnaire which is in the information dimension. In the support dimension, “to have explanations of the environment before going into the critical care unit for the first time” is the most important that is consistent with the findings from numerous studies [3,4,20]. This implies that family members are nervous on the first visit to the ICU and they do not know what to do, therefore they need support from the nurses or other staff. Lastly, “to have good food available in the hospital” being regarded as the most important need in the comfort dimension is in line with a study conducted by Pandey et al. [20]. It might be due to the hospital policy where family members who are staying with the patients are not provided food. They need to go to canteens to eat so they need good food in the hospital.
Regarding the evaluation of the association of the five dimensions of modified CCFNI scores with gender and type of admission using the student t-test, there was no statistical significance between them. And, there was no statistical significance between age, occupation, and number of ICU days with the five dimensions of modified CCFNI scores. Even though there was no significance between education and comfort dimension by post-hoc, 35.64% of the family members were graduate or even higher, which constitute the highest frequency in education. This may imply that having a family member with a higher degree not only encourages people to ask more insightful questions but also aids in their understanding of the information that is provided. They might need more comfort as they want to feel contented and relaxed in the waiting room.
Significance observed between sister/brother and cousin/uncle/aunty with a mean difference of –0.37 may be because they stay with the patient in the ICU for a longer period compared to the other family members. Post-hoc was also run between the relationship with the patient and support dimension, we found no significance between the variables. A study performed by Padilla-Fortunatti et al. [14] and Alsharari [15] describes an association between the relationship with the patient and the support dimension. Salameh et al. [16] also found that there was an association between the relationship with the patient and assurance and support dimensions. Post-hoc significance between semi-conscious and unconscious patients with a mean difference of –0.35 means that these patients might be admitted for a longer period which eventually will enlarge the requirement of comfort needs by the family members.
Similarly, statistical significance which was observed between ICU visit restriction and assurance, and comfort dimensions might be due to the limited hours of visit time. At this time, there is a great need to assure the family members as they may be unsure about the patient’s prognosis and want to know about the patient’s condition due to which their comfort needs may also be affected. Some of the participants had given their response to the open-ended question where they can mention any other needs not specified in the questionnaire, their needs mostly point towards comfort needs such as toilet facilities, an extension of the waiting room, provision of a microphone, drinking water facility, washing facility, etc. and assurance needs such as the provision of patient information at regular interval, any occurrence of emergency to the patient, etc. Another response apart from the additional comfort and assurance needs is the need for timely treatment. They want treatment to not be delayed and that it should be provided at the correct time and as soon as possible. Some participants, however, remarked positively about ICU staff and their work, such as everything being fine, and treatment being good, and they were highly satisfied with Jawaharlal Institute of Postgraduate Medical Education and Research.
The key strength of this study was that an acceptable sample size was used, enabling some sophisticated analysis to be done following the demographics of the participants. Recruiting subjects from different ICU settings was also another positive strength. It contributed positively to the literature by presenting further data on family needs. The drawback or limitation was that information was gathered from several family members for some of the patients and the results may not accurately reflect what families of ICU patients in private facilities need.
As we found that assurance is the most needed, nurses should concentrate on reassuring the family members, assisting them in emerging from crises through appropriate communication, offering support, and attending to their needs since family members are essential members of the treatment teams. Nurses can gratify and even reassure them, enabling medical personnel to provide the patient with greater care. However, only being aware of needs is not enough, the hospital administration should find ways to meet their needs and evaluate the degree to which they are satisfied.
The results of this study can help to raise awareness and discussion about how ICU nurses perceive family needs. Finally, research in adjacent fields is necessary to pinpoint family members' needs to offer them holistic treatment. Further studies are recommended to be done in the households of families whose members had been admitted to the ICU in the past to get their perspective on their previous experiences and to investigate family needs from a qualitative perspective to better comprehend met and unmet needs.
• Nurses should provide psychological support to the family members, be aware of the health status of the patient, acknowledge the families' emotional status, and follow the institution's protocol to alleviate their psychosocial stress.
• Counseling should be provided to the family members to take the best decision regarding treatments and investigations.
Notes
ACKNOWLEDGMENTS
I acknowledge all the study participants and their family members for their kind cooperation in the study.
AUTHOR CONTRIBUTIONS
Conceptualization: all authors. Methodology: LR, RRS, TM. Formal analysis: LR, RRS, TM. Data curation: LR. Visualization: all author. Project administration: all authors. Writing - original draft: LR, MJK. Writing - review & editing: MJK. All authors read and agreed to the published version of the manuscript.
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Table 1.
Table 2.
Table 3.
Table 4.
Dimension | Mean±SD |
---|---|
Assurance | 2.71±0.38 |
Proximity | 2.67±0.33 |
Comfort | 2.53±0.47 |
Information | 2.49±0.36 |
Support | 2.44±0.35 |