1

Needs and Experiences of Family Members of Patients Admitted in Intensive Care Unit of B.P. Koirala Institute of Health Sciences Nepal

Mehta*1 RS, Basnet*2 S, Bhattari*3 BK, Rai*4 HK B.P. Koirala Institute of Health Sciences, Nepal

Email: ramsharanmehta@hotmail.com

Abstract: Intensive care unit (ICU) caregivers should seek to develop collaborative relationships with their patients’ family members, based on an open exchange of information and aimed at helping family members cope with their distress and allowing them to speak for the patient if necessary.1 The objective of this study was to explore the needs and experiences of family members of patients admitted in ICU of BPKIHS.

It was hospital based descriptive exploratory study conducted among the family members or caretakers of the patients admitted in ICU for more than three days at B.P. Koirala Institute of Health Sciences during the period of 1st May 2009 to 31st July 2009, i.e. three months. Using random sampling method twice weekly i.e. on Sunday and Wednesday, all the subjects who fulfill the set criteria and give consent was selected for interview using pre-tested interview questionnaire.

Half of the patient admitted in ICU was on ventilator, male (63.3%), married (80%), and Hindu (90%). Only 20% relatives reported they full understand the explanation given by Doctor/nurses and 73.3% reported partially and 6.7% reported not at all. Most of the relatives ware satisfied with the ICU services and information provided to them. The majority of relatives demand for toilet and bathroom nearby (80%) waiting room (78%) and provision of drinking water (50%).

On the basis of study researcher concludes that there is need for explanation to the relatives at their level of understanding by the Doctor/nurses. The facility of toilet, waiting room and drinking water is urgent needs of the family members of ICU patients. Note: *1 Ram Sharan Mehta, Associate Professor, Medical-Surgical Nursing Department, Email: ramsharanmehta@hotmail.com , *2 Sarsawti Basnet, ICUNurse, *3 Prof. Dr. Bal Krishna Bhattari, HOD, Department of Anesthesia and critical care unit, *4 Hari Kumari Rai, ICU Nursing Incharge.

2

Introduction: Meeting the needs of their patients’ family members is an essential part of the responsibilities of intensive care unit (ICU) physicians and nurses, who are committed to easing the pain and suffering of those who have a critically ill relative or close friend. A major task of ICU physicians is to provide family members with the appropriate, clear, and compassionate information they need to participate in making decisions about patients who are unable to speak for themselves. Evaluations of family needs supply valuable information for improving the comprehension, satisfaction, and decision-making capacity of families.1

Molter2 in his study reported that, studies suggest that family members want honest, intelligible, and timely information; liberal visiting policies; and the assurance that their loved one is being cared for by competent and compassionate people. Providing better information was associated with better results in terms of meeting the needs and increasing the level of satisfaction of family members. Similar study was reported by nelson3. Anyone entering an intensive care unit can feel bombarded by the huge array of sensory stimuli. Family members in ICU are typically in a state of fear and shock. Studies have shown that caring for the families of patients who are critically ill is believed to be an essential component of the nurse's role. However, despite the fact that the critical care nurse is cited as the one who is responsible for meeting the needs of such families, little is known about how nurses view this role.4 Nursing care must address not only the needs of the patient, but those of the whole family. The needs of patients in intensive care and those of their families are especially complicated by the physical and emotional demands on all concerned. Families experience severe stress and anxiety, and may feel helpless and unable to cope. Accurate assessment of their needs is one of the first steps in providing appropriate care to ICU patients and their families.5 Every year in the United States, approximately 20% of all deaths occur in an intensive care unit (ICU), and more than half of those occur after life-sustaining measures are withdrawn or

withheld. Many of these patients are unable to communicate their wishes because they are sedated, receiving mechanical ventilation, confused, or comatose. The non-communicative state of such patients places much of the burden of decision making and treatment choices on the patients’ family members. This type of experience may adversely affect family members by increasing their stress levels and increasing their risk for psychological and physical symptoms. 6 In B.P. Koirala Institute of Health Sciences there are 12 bedded ICU services with all the modern facilities. Insight into the needs and experiences of family members is an initial but necessary step in providing appropriate care for both family members and patients.3 keeping these concepts in mind investigator has conducted this study.

Objectives of the study:

The objective of this study was to explore the needs and experiences of family members of patients admitted in Intensive Care Unit of BPKIHS.

3

Rationale of the study:

Having a family member admitted to Intensive Care Unit (ICU) is stressful for the whole family. Stress can hinder family members' coping and thus affect the support that is given to patient. In order to lessen the effect of stress, family members' immediate needs must be identified and met. Concern for the family members of patients who are at high risk of dying in intensive care units is both a necessary and integral part of providing holistic nursing care. When patients are at high risk of dying, their families experience burdens such as decision making and treatment choices that can cause the families psychological and physical symptoms, most commonly stress, anxiety, and depression. These symptoms in turn can affect family members’ general well-being.

Family members of dying patients play an integral role in the patients’ care in the ICU. Patients families are expected to make unprecedented decisions and deal with many difficult situations. In turn, they may have psychological symptoms such as stress, PTSD-related symptoms, anxiety, and depression, which can affect their general well-being. Researchers have developed a knowledge base on variables associated with an increase in family members’ symptoms. However, additional research is critical to expand our knowledge of symptoms experienced by family members of patients in the ICU, especially at the patients’ end of life. This research will help clinicians to develop supportive measures to assist patients’ family members during this difficult time.

Methodology: It was hospital based descriptive exploratory study conducted among the family members of the patients admitted in ICU of B.P. Koirala Institute of Health Sciences during the period of 1st May 2009 to 31st July 2009, i.e. three months. The family members of admitted patients in ICU for more than 3 days constitute the population of the study. Using random sampling method twice weekly i.e. on Sunday and Wednesday, all the subjects who fulfill the set selection criteria and give the consent were selected for interview. The informed verbal consent was obtained from each subject prior to the interview and assured the relatives that this does not affect on the treatment of their patients. The interview was taken in a separate room maintaining confidentiality, using pre-tested interview questionnaire. The questionnaire consists of three parts i.e. Part-I, consists of the socio-demographic characteristics of patients, Part–II consists the socio-demographic characteristics of the family members and Part-III consists of satisfaction level and needs of family members. The interview questionnaire is prepared on the basis of “Needs Assessment Questionnaire1” and “ICU patient understanding study Interview2” which is widely used for ICU family need assessment world wide. The prepared questionnaire is pre-tested among 10% subjects i.e. on 4 subjects and few modifications in terminology was made to for easy understanding in our setting. The interview was obtained from the main family members who spent most of the time with the patients and involved in the care of patients. The collected data was entered in Excel software and analyzed using SPSS-12.5 Software package. The Results obtained was presented in appropriate table, graphs and charts.

4

Results: Socio-demographic characteristics of patient’s:- The mean age of patients ware 47.33 with SD 21.658 and range 12-83 years. Majority (63.3%) ware male, educated (76.7%), married (80%) and Hindu (90%). Majority of the patient’s (53.3%) duration of stay in ICU is 3-5 days with mean stay of 8.93, SD = 10.352 and range 3 – 43 days. Most of them (86.7%) were admitted in conscious state, and in 50% patient’s ventilator was used, most of the patients (66.7%) had acute nature of illness.

Satisfaction of family members related to ICU services:-All the relatives reported that doctor/nurse had talked about the care and condition of patient, 93.3% relatives reported ICU nurses had spoken about the patient’s condition and they spent less than 15 minute to explain the condition. Most of the nurses (93.4%) reported that they pay the ICU charges by self or with the help of relatives and 70% reported it is difficult to pay ICU charges. Regarding the level of satisfaction in ten likert scales, most of the family members are satisfied with the information about their patient’s condition and the information provided to them. The details are depicted in table 1.

Understanding about the patient’s condition by the family members: - Most of the relatives are a ware that their patient is in ventilator, receiving antibiotic, on N-G Tube, on ECU, and having Foly’s catheter. The details are in Table 2.

Needs of the family members:- Most of the relatives reported in four points liken scale towards positive side, which is 4 and 3, instead of 2 and 1. Regarding the prognosis of patients the responses of relatives is differ than the reality of patient i.e. 10% relatives said prognosis is poor where as in reality 36.7% patient’s condition is poor. Details are in Table 3.

Suggestions for better ICU patient care and welfare of family members: - Most of the family (80%) suggested for needs of toilet and bath room, 78% suggested for waiting room, 50% demands for p0rovision of drinking water and 50% request for round the clock security services.

Discussion:

Patients spent enormous amounts of energy trying to pull the pieces of the ICU experience together. At times, families were the source of this information. Patients in families that withheld information from them said they listened to the nurses and physicians during rounds to try to piece together that were happening to them. Nurses can work closely with family members to build trusting relationships with patients and families and they can include family members as part of the team. Family members in turn can help to provide support for patients. The age distribution of family members were between 12-83 years with mean 47.33 and SD 21.658, similarly the age of patient were between 16–70 years with mean 38.48 and SD 16–70. Most of the relatives were female (60%) and patients were male (63.3%). Similar demographic characteristics were also reported by the study conducted by Azoulay 1 , Akinci 7 and Colleen 8.

5

The overwhelming need of ICU patients was to feel safe. The perception of feeling safe was influenced by family and friends, ICU staff, religious beliefs, and feelings of knowing, regaining control, hoping and trusting, reported by David 5 which is similar to this study. Most of the relatives were satisfied with the information provided by the Doctor/nurses to them. They are also satisfied with the services of Doctor and Nurses provide in ICU. The satisfaction level on various components like: provided best possible care, explanation provided, understanding about therapies, courteousness of staff is high. Similar findings were reported by A Zoulay1, David5 and Akinci7 . David 5 reported the majority of respondents were satisfied with overall care and with over all decision making. The families reported the greatest satisfaction with nursing skill and competencies (92.4 +_ 14.0). The least satisfaction with waiting room atmosphere and physician communication. Most of the relatives were suggested for facilities of toilet (80%), waiting room (78%) and drinking water (50%). Similar Issues were addressed by Akinci7 in his stay as he reported 24% relatives were dissatisfied with waiting room services.

Conclusion:

Intensive care unit (ICU) caregivers should seek to develop collaborative relationships with their patients' family members, based on an open exchange of information and aimed at helping family members cope with their distress and allowing them to speak for the patient if necessary. On the basis of study researcher concludes that there is need for explanation to the relatives at their level of understanding by the Doctor/nurses. The facility of toilet, waiting room and drinking water is urgent needs of the family members of ICU patients

References:

1. Azoulay E, Pochard F, Chevret S, Lemaire F, Mokhtari M, Fall JL et al. Meeting the needs of intensive care unit patient families: A multicenter study. Am J Respir Crit Care Med. 2002;163: 135-139.

2. Molter NC. Needs of relatives of critically ill patients. Heart Lung. 1979;8: 332-339. 3. Nelson JE, Walker AS, Luhrs CA, Cortez TB, Pronovost PJ. J.Clin Nurs.2005; 14(4):501-9. 4. Hardcer J. Meeting the needs of families of patients in intensive care units. Nurse Times. 2003;

99(27): 26-7. 5. David J, Monique W, Brenda C, Candice B, Debra G, Otto M. Measuring the ability to meet family

needs in an intensive care unit: Clinical Investigations. Critical Care Medicine. 1998; 26(2): 266-271. 6. Angus DC, Barnato AE, Linde-Zwirble WT, et al. Use of intensive care at the end of life in the

United States: an epidemiologic study. Crit Care Med. 2004; 32(3):638–643. 7. Akinci SB, Salman N, Kanba KM, Ayparu. Assessement of family satisfaction in the ICU. European

Journal of Anesthesiology. 2004 ; 21 :7-8. 8. Colleen EG, Diane IC, Jeanne SE, Patricia AF. Heather JV. Visiting presence of patients in the ICU

and in a complex, care medical unit. Americal Journal of critical. 2004 ; 13 : 194 – 198.

6

Table 1 Level of satisfaction about ICU services among the family members

N= 30

SN ICU services Satisfaction level

1 2 3 4 5 6 7 8 9 10 Mean*

1 Understanding about disease process / illness of the patient.

0 0 6.7 13.3 30 13.3

20 6.7 3.3 6.7 5.93

2 Understanding about therapies / treatment of the patient.

0 3.3 6.7 6.7 23.3

23.3

13.3

3.3 6.7 13.3 6.23

3 Communication received from ICU nurses.

0 3.3 3.3 3.3 13.3

23.3

23.3

3.3 10.0

16.71

6.83

4 Communication received from ICU doctors

0 0 3.3 16.7 16.7

23.3

10.0

13.3 3.3 13.3 6.40

* Full Score = 10

Table 2 Understanding about the patient’s condition by the family members

N= 30

SN Information about patient

Responses of family members Chart reality

Yes (%)

No (%)

Yes (%)

No (%)

1. Patient on ventilator / breathing machine. 60 40 53.3 46.7

2. Receiving antibiotics. 66.7 33.3 70 30

3. On medication for pain or anxiety. 60 40 60 40

4. Have N-G tube insertion. 60 40 53.3 46.7

5. On N-G tube feeding. 26.7 69.3 16.7 83.3

6. Having EKG / cardiac monitor. 100 0 100 0

7. Receiving dialysis. 26.7 73.3 23.3 76.7

8. Having Foly’s catheter. 66.7 33.3 70 30

7

Table 3 Needs of the family members of patients admitted in ICU

N=30

SN Perception needs of the family members.

Responses.

4 (%)

3 (%)

2 (%)

1 (%)

Mean* Score

1. Feeling that best possible care is given to the patient. 23.3 70 0 6.7 3.0

2. Hospital personnel care about the patients. 23.3 73.3 3.3 0 3.20

3. Understanding level of explanations given by ICU personnel.

30 56.7 13.3 0 3.17

4. Feeling that honest information is given about the patients. 36.7 56.7 6.7 0 3.30

5. Understanding about patient’s therapies. 40.0 36.7 23.3 0 3.17

6. Courteousness of the ICU personnel. 13.3 76.7 10 0 3.3

7. Interest of ICU personnel regarding family members. 13.3 73.3 13.3 0 3.0

8. Explanations of equipments used to the patient. 33.3 50 16.7 0 3.17

9. Satisfaction with medical services. 33.3 50 16.7 0 3.17

10.

Feeling comfortable visiting the patient in ICU. 33.3 23.3 10 0 2.8

* Full Score= 4, 1= All most all of the time, 2= Most of the time, 3= Only some of the time, 4= None of the time