Informational Needs of the Families of Patients Discharged From Intensive Care Units: A Case of Iran

Abstract

Background

thousands of patients are admitted to intensive care units annually, which is a stressful event. Many of these patients still require particular care after discharge. In many countries, families play an essential role in taking care of these patients after discharge. This study aimed to determine the informational needs of families of patients discharged from Intensive Care Units (ICU), Kerman, southeast Iran.

Methods

this study had a cross-sectional design. Families were selected using the information extracted from patients’ medical records. One hundred forty family members of the ICU discharged patients participated in the survey using convenience sampling. Data collection tools were a validated researcher-made questionnaire about informational needs and a demographic characteristics form.

Results

the mean score of family informational needs was 31.18 ± 3.97 out of 40. Most families required a high level of information in all dimensions. However, the maximum need was associated with self-care subscale (4.89 out of 5), and the minimum need was associated with defecation (3.13 out of 5).

Conclusion

the families of patients discharged from intensive care units required much information about different areas of care particularly self-care. Health care providers, especially nurses, should be aware of the informational needs of the ICU patients’ families post-discharge to provide better care.

Keywords

care informational needs family intensive care units

Every year, thousands of patients are admitted to intensive care units (ICUs). Families believe that patients’ admission to the ICU is the saddest event of their lives.¹ In this critical situation, they will encounter a new environment, unknown outcomes, and even the death of their loved one.^2,3 Since most patients in this unit are not capable of self-determination, families are responsible for making decisions and supporting their patients.^2,4 Furthermore, many patients, given the physical and psychological injuries, need individual care after discharge, which must be provided by an educated and skilled person, but it is not possible due to families’ financial problems.⁵ Families will face many problems because they are not familiar with the proper type and method of care, which increases the likelihood of patients’ re-admission.⁶ Factors such as the lack of educational and professional systems, no supervision, and non-persistent care cause many problems for the families. Therefore, comprehensive caregiving training to these patients will save costs and reduce patients’ readmission in hospitals.^6,7 Hence, paying attention to families is one of the essential components of the treatment process, which is somehow neglected in the health care system.^2,4 In other words, caregivers do not have adequate oral education at the discharge time so they seek information from professional and non-professional sources.⁵

Few studies assessed the informational needs of families of patients discharged from ICUs. Pagani et al. showed that caregivers of patients with a low level of consciousness required easy communication with physicians and health care workers to receive information about complications and problems, to provide better care.⁸ Buchini et al. considered the lack of knowledge of caring for patients with vegetative state as one of the most common barriers to care provision.⁹ A study on 17 family caregivers of patients with a vegetative state found that caregivers of these patients needed urgent education.⁵ The results of another study showed that at the time of discharge, the majority of patients and their families required moderate to high information about caring for surgical wounds, activities and rest, medications, nutrition and others.¹⁰ Apparently, caregivers' views about the informational needs for caring their patients can lead to a better understanding of their needs and, consequently, providing appropriate care. The results of the studies showed that the needs of the patients and their families were not properly understood by the medical staff.^11,12 Therefore, nurses must consider the views of patients and their families when determining informational needs.¹³

The review of literature showed limited studies on the informational needs of the families of the patients discharged from ICUs.^5,8,9 Since caring for families is the healthcare providers' essential duties, awareness of their informational needs will enable them to provide proper care for ill patients and their families.¹⁴ In addition, providing care based on family needs increases their satisfaction.^15,16 Therefore, considering the importance of the family role in the post-discharge period of ICU patients, this study aimed to determine the informational needs of families of patients discharged from ICUs to home in southeast Iran.

Design and Methods

Study Design and Setting

This study had a cross-sectional design. The study settings were the ICUs of Shafa, Bahonar, and Afzalipour hospitals in Kerman. These centers provide specialized services to various intensive care patients in southeast Iran.

Sample Size and Sampling

The study population was the families of patients discharged from intensive care units who required specialized care for intra trachea, ventilation, position change, urine, skin, and bedsore. Sampling was conducted eith convenience method.

The sample size with a confidence interval of 95%, was estimated to be 89 individuals using a pilot study on 15 patients’ families (Mean = 3.54, Standard Deviation (SD) = 0.94, d = 0.05SD²). For drop out probability, questionnaire were distributed among 150 families, of whome 140 family members of the discharged patients participated in the study. The response rate was 93.33%. The pilot sample was included in the final analysis.

Data Collection Tools

Data collection tools were two researcher-made questionnaires: a demographic characteristics form and informational needs questionnaire. The patient's family demographic characteristics form included age, sex, marital status, educational level, occupation, monthly income of the family, and families-patients’ relationship. The patient's demographic characteristics form included age, sex, marital status, educational level, insurance coverage, patient diagnosis during admission, time passed from ICU discharge, the patient's health at the time of ICU discharge and the current condition.

The questionnaire of families of patients discharged from ICUs was developed by reviewing the literature and interviewing families of patients discharged from ICUs, experienced nurses, physicians working in ICUs, rehab centers personnel. The questionnaire consisted of 67 items and eight dimensions. The dimensions included: 1) public health (9 items), 2) airway care (15 items), 3) urinary care (8 items), 4) defecation care (6 items), 5) nutrition and medicine (9 items), 6) the mental health of the patient (3 items), 7) essential information (11 items), and 8) self-care (6 items). The response to the questionnaire was based on family needs from “No need” (0 scores) to “A lot” (5 scores). The minimum score for each dimension was 0, and the maximum score was 5. The total score was calculated by summing the scores of all dimensions. Therefore, the total score of the questionnaire ranged from 0 to 40. The higher the score, the higher the educational needs. Moreover, scores from 0 to 13.34 indicated low informational needs, scores from 13.35 to 26.67 showed moderate informational needs, and scores from 26.68 to 40 indicated high informational needs.

For content validity, the questionnaire was provided to 16 faculty members of Razi Nursing and Midwifery Faculty and Medicine Faculty. Then, the content validity index was calculated to be 0.99. In addition, 30 questionnaires were completed by the target population to determine the reliability, and the Cronbach's alpha was estimated to be 0.91.

Data Collection and Analysis

The researcher started sampling after obtaining the code of ethics, permission letter from Razi Nursing and Midwifery Faculty, and permission from the managers of hospitals and authorities of the ICUs. The contact information of the patients discharged from ICUs was extracted from the archived medical records (from 2016 to 2018). Then, the researcher asked the eligible families where they could participate in the study freely (at home, the rehab center, and in some cases, the nursing home care clinics). The inclusion criterion was being a family member of the patient who was the main caregiver of the patient (by self- administering test of the family members). The research process, its goals, and the confidentiality of the information were described, and informed consent was obtained from the participants. The data were collected using self-report questionnaires. In case the main caregiver had been illiterate, the researcher would have completed the questionnaire using the interview.

The data were analyzed through the SPSS v. 18.0. Frequency, percentage, mean and standard deviation were used to describe the socio-demographic characteristics of the participants. Mean and standard deviation was used to describe the informational needs of the participants. Given the normal distribution of the informational needs score, the Pearson Correlation Coefficient, Independent sample t-test, and ANOVA test were used to check the association between the informational needs and socio-demographic characteristics. The level of significance in all statistical analyses was less than 0.05.

Ethical Considerations

This research received the code of ethics from Kerman University of Medical Sciences (IR.KMU.REC.1396.1699). The researcher explained to participants that their participation was optional and they could withdraw whenever they wanted. The caregivers were also ensured that the collected information was confidential and would be used only for research. Informed consent was taken from the main caregivers of the patients.

Results

The mean age of the main caregivers was 40.86 ± 11.4 (minimum =19 years, and maximum = 63 years). The majority of the families (70.7%) were female and married (72.9%). Twenty-five percent of the caregivers had an academic degree. Most caregivers were housewives. Nearly half of the participants (41.4%) had income less than 10 million Rials (IRR) (237.50 USD at the time of the study) (Table 1). The mean age of the patients was 40.02 ± 17.38 and the mean time passed from ICU discharge was 129.72 ± 192.74 days. More than half of the patients were female (54.3%) and married (64.3%). Twenty-two percent of the patients had an academic degree. All patients had insurance. Neurosurgery was diagnosed in most patients (45.7%), and cardiovascular disease was diagnosed in the lowest number of patients (7.1%). 97% of the patients were discharged from ICU with some degree of unconsciousness while 76% of them were in coma status.

Table 1.

Informational Needs of the Families of Patients Discharged From ICUs According to Demographic Characteristics.

Variable	Mean	SD	Informational needs		Statistical test	P value
Variable	Mean	SD	Mean	SD	Statistical test	P value
Age (year)	40.86	11.40	31.18	3.97	r = -0.21	0.01
	Frequency	Percentage
Sex
Female	99	70.7	32.16	3.39	t = -0.96	0.34
Man	41	29.3	31.72	3.7	t = -0.96	0.34
Marital status
Married	102	72.9	31.74	3.35	F = 2.78	0.07
Single	28	20	33.14	3.69
Others	10	7.1	33.63	3.68
Education
illiterate	8	5.7	32.15	2.43	F = 0.62	0.65
reading and writing skill	15	10.7	31.68	3.94
middle/high school	35	25	31.68	3.61
Diploma	46	32.9	32.11	3.47
University education	36	25.7	32.89	3.42
Occupation
Unemployed	21	15	32.65	3.38	F = 1.72	0.14
Housewife	63	F	31.63	3.43
Worker	15	10.7	31.57	3.62
employed	21	15	32.84	3.29
self-employed	20	14.3	32.50	3.65
Income
< 10 million IRR (237.50 USD)	58	41.4	32.28	3.34	F = 0.10	0.90
10 - 20 million IRR	62	44.3	32.01	3.70
20 < million IRR (475 USD)	20	14.3	32.29	3.37
Residence
Kerman City	62	44.3	32.26	3.58	F = 1.25	0.29
Villages around Kerman city	34	24.3	31.38	3.42
Kerman province	44	31.4	32.61	3.37
Families-patients relationship
Father	16	11.4	31.28	3.83	F = 1.02	0.41
Mother	19	13.6	30.95	3.74
Sister	20	14.3	32.20	3.74
Brother	9	6.4	31.78	2.26
Spouse	45	32.2	32.65	3.02
Child	17	12.1	33.29	3.89
Others	14	10	32.00	3.83

r = Pearson Correlation Coefficient, t = Independent sample t-test, F = ANOVA.

The majority of patients’ families (80.7%) could not provide nursing care at home. Only 12.1% of them had experience of caring for a patient discharged from the ICU who required special nursing care. The majority of families (75.7%) referred to health centers for their caring informational needs. About 26% of families used the internet, 51.4% used other people's experiences, and 22.1% asked the health care staff to meet their informational needs in the care of their patients. Only 2.1% of families received full education and training, 81.4% were trained individually to some extent at the discharge time, and 16.4% did not receive any education and training at all. 17.9% learned practical skills and 0.7% read pamphlets and books.

The mean total score of families' informational needs was 31.18 ± 3.97 out of 40. 87.1% of them required a high level of information, and 12.9% required a moderate level of information. Among the various dimensions of informational needs, the maximum need was associated with self-care (a mean of 4.89) and the minimum need was associated with defecation (an average of 3.23) (Table 2).

Table 2.

The Informational Needs of Families of Patients Discharged From ICUs.

Dimension	Items	Mean	SD
Public Health	1. Hand hygiene (how to hand wash and disinfect with soap and disinfectants)	3.74	1.10
	2. Patient’s oral care and mouthwash use	3.67	1.01
	3. How to care for the patient's eyes and medication use	3.52	0.83
	4. How to care for the skin and hair	3.43	0.99
	5. Skin care to prevent bed sores	4.10	0.90
	6. How to care for bed sores	3.95	1.07
	7. How to take a bath in the bed	3.34	1.29
	8. How to perform limb physiotherapy	3.70	1.21
	9. How to care for the patient when there is a disease like flu	3.82	1.21
	Total Score	3.70	0.57
Airway Care	10. The importance of the appropriate pressure level of the tracheostomy cuff	3.79	1.02
	11. How to replace the retaining strip and place the gauze fabric around the tracheostomy tube	3.92	0.85
	12. How to remove and rinse the tracheostomy metal tube	4.05	0.91
	13. Knowing the right time for taking care of tracheostomy	3.82	0.99
	14. How to do oral or tracheostomy suctioning	4.01	1.09
	15. Knowing the right time for suctioning	3.91	0.99
	16. How to use a suction device	3.60	0.91
	17. How to work with a home ventilator	3.82	0.99
	18. How to use an oxygen container/oxygen maker	3.60	0.91
	19. How to use respiratory equipment (oxygen mask, nasal cannula, t-piece)	3.76	1.16
	20. How to wash and disinfect the mask or other respiratory equipment	3.80	1.04
	21. How to use Ambo Bag and how to disinfect it	3.90	1.10
	22. Chest physiotherapy	3.86	1.10
	23. Knowledge of lung infection symptoms	3.91	1.07
	24. Preventing the lung infection symptoms	3.88	1.01
	Total Score	3.86	0.70
Urinary Care	25. How to put an internal urinary catheter	3.85	1.19
	26. How to put an external urinary catheter	3.63	1.08
	27. How to work with a urine bag	2.54	1.65
	28. How to measure urine volume	3.12	1.21
	29. How to care for the urinary catheter	3.35	1.15
	30. Knowledge of urinary tract infection symptoms	3.93	0.85
	31. Prevention of urinary tract infection	3.82	1.33
	32. How to manage the patient in the reduction of urine volume	3.84	0.96
	Total Score	3.51	0.85
Defecation Care	33. Checking the frequency of bowel movements and stool color	3.46	1.28
	34. How to adjust proper bowel habits at the right time	3.40	1.38
	35. Prevention and control of constipation	3.35	1.40
	36. Prevention and control of diarrhea	3.50	1.36
	37. How to empty the ostomy pouching system and its reinstallation	3.33	1.06
	38. How to place a bedpan for the patient	3.75	1.78
	Total Score	3.23	1.11
Nutrition and Medicine	39. How to make, prepare and frequency of the patient feeding	3.67	1.90
	40. The method of feeding through the nasogastric tube or gastrostomy	3.75	0.94
	41. Checking the correct location of the nasogastric tube or gastrostomy	3.97	0.84
	42. Prevention of the complications associated with nutrition through the nasogastric tube	3.48	1.32
	43. How to feed the patient during GI intolerance	4.10	0.93
	44. How to give drugs to the patient through the nasogastric tube	3.52	1.46
	45. How to inject subcutaneous /intramuscular drugs	3.58	1.17
	46. How to inject intravenous drugs	4.06	1.12
	47. Knowledge of drug side effects	4.35	0.84
	Total score	3.83	0.69
The Mental Health of the Patient	48. How to control the patient's mental tensions and stresses	4.63	0.54
	49. How to deal with the patient's depression	4.83	0.37
	50. Psychological issues should be considered at the patient's visit	4.84	0.43
	Total Score	4.76	0.29
Essential Information	51. How to control the level of consciousness	4.21	0.73
	52. How to control vital signs	3.85	0.98
	53. How to care for a patient with a fever	3.88	0.86
	54. How to control and relieve patient’s pain	3.90	0.98
	55. How to prevent blood clots (deep vein thrombosis)	4.26	0.74
	56. Identification of warning signs in the patient (symptoms that endanger the patient's life)	4.62	0.48
	57. How to care for the patient during seizure	4.66	0.47
	58. How to perform basic cardiopulmonary resuscitation (how to do cardio massage and number of massages)	4.55	0.60
	59. How to remove tracheostomy tube and reinsert it in very emergency cases	4.87	0.56
	60. Knowing emergency numbers (No.115 in Iran) and the nearest emergency centers	3.36	1.50
	61. Knowing the rehabilitation centers for ICUs patients and how to contact them	4.81	0.39
	Total Score	4.25	0.46
Self-care	62. How to control stress and mental tensions caused by caring for the patient	4.59	0.21
	63. How to take care of his/her physical health, while caring for the patient (for changing the patient’s position, suction, etc.)	4.82	0.37
	64. How to adapt psychologically to the patient’s condition	4.91	0.28
	65. How to control the patient’s stress and psychological tensions associated with the patient's condition	4.72	0.44
	66. How to control anger in dealing with the patient's condition	4.96	0.18
	67. How to manage and plan for patient care	4.97	0.19
	Total Score	4.89	0.19
	Total Informational Needs Score	31.18	3.97

Among the caring needs of the “public health” dimension, the greatest need was associated with “skin care to prevent bed sores” (mean 4.10) and the minimum need was associated with “bathing in the bed” (mean 3.34). Among the caring needs of the “airway care” dimension, the greatest need was associated with the “removal and washing of the metal tracheostomy tube” (mean 4.05), and the minimum requirement was associated with “how to use a suction device and an oxygen container/oxygen maker” (mean 3.60). Among the caring needs of the “urinary care” dimension, the greatest need was associated with “the awareness of urinary tract infection symptoms” (mean 3.93) and the minimum need was associated with “how to use a urine bag” (mean 2.56). Among the caring needs of the “defecation care” dimension, the most need was associated with “how to place a bedpan for the patient” (mean 3.75) and the least need was associated with “how to adjust proper bowel habits at the right time” (mean 3.40). Among the caring needs of the “nutrition and medicine” dimension, the most requirement was associated with “knowledge of drug side-effects” (mean 4.35) and the least need was associated with “prevention of complications associated with gastric tube feeding” (mean 3.48). Among the caring needs of the “patient’s mental health” dimension, the greatest need was associated with “paying attention to mental problems when visiting the patient” (mean 4.84) and the least need was associated with “how to control patient’s stress and psychological tensions” (mean 4.63). Among the caring needs of the “essential information” dimension, the most essential care was “to remove the tracheostomy tube and re-install it in very emergency cases” (mean 4.87), and the least need was associated with “knowing emergency numbers (115 in Iran) and the nearest Emergency centers” (mean 3.36). Among the caring needs of “self-care” dimension, the greatest need was associated with “how to manage and plan for patient care” (mean 4.97), and the least need was associated with “how to control stress and mental tensions caused by caring for the patient” (average 4.59) (Table 2).

A statistically reverse significant association was found between families’ informational needs and age so that the older the age, the lower the informational needs and vice versa. No significant association was found between the families’ informational needs and other demographic characteristics (Table 1).

Discussion

The results of the study showed a high level of the informational needs of families of patients discharged from ICUs. A study on 17 family caregivers of patients with a vegetative state found that caregivers of these patients needed urgent education, but they received little training at the time of discharge, so they had to seek information from different sources after discharge.⁵

The present study showed high family needs for self-care, patient mental health, and essential information (score above 4 out of 5), and other informational needs were above the average (score above 3.23 out of 5). Unfortunately, limited studies have addressed the informational needs of the families of the patients discharged from ICUs,^5,10 and only the needs of the families during the ICU admission^3,4,17–19 and the needs of the discharged patients have been investigated.^18,20,21 In addition, Bassampour et al. showed that the majority of patients and their families required moderate to high information about caring for surgical wounds, activities and rest, medications, nutrition and others at the time of discharge and one month later.¹⁰ Alawiani et al. in Iran showed that 100 percent of the patients discharged from the medical ward required information about caring for indwelling catheters' and 'wound and dressing', and 92% required information about 'activity and mobility.' 100 percent of the patients discharged from the surgical department required information about 'caring for intrabody catheters, fractured limb, and wound and dressing.²⁰ Although the results of previous studies^10,20 support our results, in the present study the time passed from ICU discharge was more than one month and yet the families had moderate to high informational needs. Unfortunately, in Iran, particularly in the southeast, there are a few well-equipped rehabilitations, and home care centers for ICU discharged patients so that about 80% of the samples did not have access to home care services. Therefore, the families with minimal knowledge and experience had to take care of their patients. Only 12.1% of our samples had experience of caring for a patient at home. Thus, most families referred to health care centers to meet their informational needs. However only a few numbers of them asked health care staff for help and others had to seek for other resources such as the internet, and other people’s experiences. In addition, as Iran has been sanctioned for a long time, the economic condition affects patients' families and most of them are not capable of providing patients caring requirements let alone hiring private nurses. Therefore, the families seek for charity and other non-governmental organizations, which do not meet their actual needs. Unfortunately, inadequate education at the discharge time makes this situation worse for the families.

The majority of our samples received any or insufficient education at the time of discharge. Kerzman studied the level of knowledge of discharged patients about drug treatment and reported that the informational level of the patients was low and 40% of them did not receive any education.²¹ Vafaee et al. showed that 94% of the patients considered education and training inadequate and only 6% believed in enough training, which is consistent with the results of this study.²² In addition, Khezrullo et al. showed that 66.9% of nurses did not provide desirable education for patients.²³ Mitchell et al. in their mix method study confirmed that the nurses considered the needs of the families of trauma patients as less important than the families’ own needs.¹⁹ Therefore, it is necessary to pay particular attention to the education of patients’ families, especially the families of ICUs patients. Family-centered education can be provided with proper need assessment of these families. In addition, the discharge planning and education should begin with the admission. The relatives should then already be involved as their informational needs is high right from the patient admission.²⁴ The long length of stay of ICU patients (in the present study: patients stay 129.72 ± 192.72 days) will be an enough time to give information to their families. A possible solution also would be websites and videos that can provide such information.²⁵

In the present study, the families' informational needs were self-care, mental health of the patient, essential information, airway care, nutrition and medicine, public health, urinary care, and defecation, respectively. The results of studies showed that the needs of patients and families are not properly understood by the medical staff, which can lead to inappropriate care provision.^11,12 Cameron et al. showed a high level of depression in 67% of caregivers of patients discharged from ICU initially and in 43% one year after discharge.²⁶ Critical illness and post-discharge problems in ICUs have long-term complications for caregivers of these patients, including psychological factors such as depression, anxiety, post-traumatic stress syndrome, panic, and aggression, which result in reduction of the caregivers’ quality of life.^18,27 Therefore, it is necessary to pay particular attention to the psychosocial needs of the families of patients discharged from ICUs as well as other needs.

The results of the present study showed that the older the age, the lower the informational needs and vice versa. No association was found between other demographic variables and informational needs. Unfortunately, we could not find any article regarding this issue.

Limitations

This study had some limitations. We used a long questionnaire to examine the informational needs of the families, which might affect precise responses of the families. However, our response rate was high. In addition, we did not ask the participants directly about wound care, however there were several items related to wound care in the questionnaire such as skin care, bed sore care, and tracheostomy care. Moreover, we used convenience sampling so the results should be generalized to other communities with caution.

Conclusion

The results of this study showed that the families of patients discharged from ICUs required much information about different areas for taking care of their patients. It is suggested that educational programs be designed and implemented for the optimal education of these patients’ families. More researches are needed to evaluate families’ performance in caring for a patient discharged from ICUs and nurses’ performance in educating families.

Footnotes

Acknowledgment

We thank all caregivers of patients discharged from ICUs to participate in the present study.

Availability of Data and Materials

Data and material availability are available via corresponding email.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Mahlagha Dehghan

Author Biographies

Asma Hajalizadeh is an intensive unit nurse (MSc in critical care nursing) with more than 15 years’ experience of caring critical care patients. Her interest is patients and their family issues while admitted in ICU.

Mehdi Ahmadinejad is an assistant professor in Anesthesiology and Critical Medicine in Kerman University of Medical Sciences. His research interest is intensive care and medicine, and clinical trials.

Mahlagha Dehghan is an assistant professor in nursing school in Kerman University of Medical Sciences. She is the head of Critical Care Nursing department. Her research interests are spiritual issues, complementary and alternative medicine, scale development and critical care.

Mansoor Arab is a newly retired lecturer of nursing school of Bam University of Medical Sciences. His interest is all issues related to nursing care and improving the quality of nursing care.

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