Jordanian survivors’ experiences of recovery from critical illness: a qualitative study M.S. Abdalrahim
MSC, PhD
& R.S. Zeilani
MSC, PhD
Associate Professor, Clinical Department, Faculty of Nursing, The University of Jordan, Amman, Jordan
ABDALRAHIM M.S. & ZEILANI R.S. (2014) Jordanian survivors’ experiences of recovery from critical illness: a qualitative study. International Nursing Review 61, 570–577 Background: Despite the fact that a lot of patients consider their discharge from hospitals as a positive sign of progress towards regained health, many of them start suffering from physical, psychological and social problems after discharge from intensive care units. Aim: This study aims to describe the experiences of Jordanian survivors of critical illnesses 3 months after discharge from a hospital intensive care unit. Methods: A descriptive qualitative approach was used to involve 18 Jordanian patients from two hospitals in a major Jordanian city using open-ended interviews. Interview transcripts were analysed using content analysis method. Results: Three main themes have emerged from the data: (1) new meaning of life; (2) different perspectives on the meaning of life, and (3) struggle for role identity. Limitation: The sample was chosen from one city in Jordan; longitudinal study might help identify the change in patients’ experiences over time. Conclusion: Patients described the discharge from the intensive care unit as a means of rescue from death; they began to value their spiritual and religious rituals. Negative traumatic experiences hindered the patients’ recovery process. During recovery, patients struggled to resume their power and role in family. Implications for Nurses and Health Policy: This study emphasizes the importance of providing care according to the patient’s individual needs, related to their cultural and spiritual milieu; there is a need to develop follow-up services for ICU survivors within a national health policy. Further educational and training programmes in the patient’s issues after discharge from hospital are needed. This will definitely help nurses care after this patient group. Keywords: Critical Care, Discharge, Intensive Care, Jordan, Patient Experiences, Qualitative Research, Recovery
Introduction Experiencing daily life after critical illness creates many challenges and struggles for patients. Although most patients consider their discharge from hospital as a positive indication of progress towards regained health (Chiang 2011), many continue Correspondence address: Ruqayya S. Zeilani, Clinical Department, Faculty of Nursing, The University of Jordan, Amman 11942, Jordan; Tel: +9626 5355000/Ext: 23140; Fax: +9626 5300244; E-mail: [email protected].
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to suffer from physical, psychological and existential problems (Cantlay 2012), whereas some of them find that quality of life was reduced for many months and years following critical illness (Williams & Leslie 2008). During the previous decade, qualitative research has shed light on how patients recall the experience of critical illness and intensive care. However, there was very little research – with a few exceptions – relating to the experiences or recollections of patients from non-Western cultures. This paper aims at
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describing the experiences of Jordanian survivors of critical illness during recovery 3 months after discharge from hospital to their home.
Background Experiences of critical illness and intensive care are said to have physical, emotional and social impacts on the patients’ lives (Kynoch et al. 2010). Previous studies have reported that the experience in intensive care unit (ICU) is traumatic for the majority of patients (Löf et al. 2008; Storli et al. 2008). These experiences had an impact on patients’ lives after they had been discharged home. Physical problems took many forms, which included physical pain, weakness, sleeping difficulty, loss of appetite, tiredness and shortness of breath (Choi et al. 2011; Deacon 2012). These symptoms had always been an obstacle to the patients’ abilities to perform daily living activities such as dressing, personal hygiene, cooking and cleaning (Agard et al. 2012). Many patients felt unsure of what to expect during their recovery; they also reported crucial need for detailed information and reassurance about the progress of their illness and regaining functional abilities so as to participate in normal activities of daily life (Agard et al. 2012; Deacon 2012; Lapum et al. 2011; Locsin & Kongsuwan 2013). Recent studies have emphasized the psychological experiences in the ICU; they showed that patients may experience panic, nightmares, flashbacks, anxiety and fear when flashing back their stay in ICU (Deacon 2012; Prescott & Iwashyna 2014; Storli et al. 2008). The majority of these studies focused on psychological problems such as severe anxiety, depression or delusional memories describing the experiences manifesting post-traumatic stress disorder. These problems have lasted for weeks and up to a year after discharge from the ICU (Brummel et al. 2014; Jackson et al. 2014; Svenningsen 2013). Samuelson (2011) described ICU memories in a total of 250 adult mechanically ventilated patients in Sweden, finding that 71% of patients who remembered their stay in the ICU experienced unpleasant memories such as nightmares, flashback of their time in the ICU that interrupted their optimal recovery after discharge. A number of studies examined the follow-up services of critically ill patients’ recollection of their memories and emotions while they were in recovery period. These studies provided an inside view of the meaning of their illness as they interpreted it, which included how their behaviour and perspectives about illness changed during the time of recovery (Herridge et al. 2008). Many studies of patients’ follow-up visits emphasized that the need for identifying patients’ rehabilitation has vital elements to recover after they had been in the ICU (Egerod et al. 2013; Williams & Leslie 2011). The National Institute for Health
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and Care Excellence (NICE) guidelines on rehabilitation following critical illness recommended individualized rehabilitation goals and a self-directed booklet for patient’s rehabilitation during the first 6 months of their discharge from the ICU to their homes (NICE 2009). According to the reviewed studies, there are a limited number of studies exploring the experiences of patients after discharge from hospital, focusing on the psychological impact on the patient’s life. The majority of research relates to Western culture, with only a few studies relating to Arabic culture. One of these studies explored Jordanian Muslim women patients’ experiences of suffering after transfer from ICU to general wards; the mentioned study showed how women had suffered from physical, social, spiritual and existential distressing experiences (Zeilani & Seymour 2010). Another study described Jordanian critically ill women’s experiences of bodily changes and how these experiences have developed over time (Zeilani & Seymour 2012). One of the basic roles of a nurse is to prepare patients well for this period. This paper contributes to nurses’ understanding of this little studied aspect of patients’ experiences.
Methods A descriptive qualitative design was applied with the aim to describe the participants’ experiences 3 months after being discharged from the ICU in the Jordanian context (Clandinin & Connelly 2000). The study used open-ended interviews of participants to identify main issues described by these participants from their own perspectives. This helps researchers explore their experiences, using their own words (Silverman 2013). To gain insight into participants’ experiences, content analysis of the text was used (Graneheim & Lundman 2004). Sample and settings
The study sample was drawn from three ICUs and involved patients who were discharged from a 10-bed medical and surgical (mixed) ICU in a private hospital and two ICUs with a capacity of 8 beds each and had medical and surgical patients at a governmental hospital in one main city in Jordan. All participants were interviewed in their own homes at a convenient time. Some participants invited their family members (daughter or wife) to serve coffee or tea as a part of the Jordanian cultural tradition. Participants were selected purposefully to provide rich information about their experiences of recovery from critical illness (Morse 1995). The aim was to obtain a deeper understanding of critically ill patients’ recovery after spending more than 24 h in the ICU, in hospital wards and being at home for at least 3 months after discharge. Inclusion criteria include participants
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above 18 years, can comprehend, able to speak Arabic language and willing to invite researchers to their home. Twenty-three potential participants who met the inclusion criteria were approached to take part according to their experience in the ICU. Those who agreed to participate voluntarily (19 participants) were included consecutively, irrespective of the diagnosis, gender and the length of stay in the ICU, of whom one withdrew from the interview due to travelling outside the country. Therefore, 18 participants, composed of 11 women and 7 men, aged between 28 and 86 years (mean = 49 years), shared their experiences 3 months after discharge. The participants’ demographics are summarized in Table 1. Recruitment and data collection
Data collection process was conducted from January to June 2013. All participants were contacted while they were at hospital by the ICU registered nurses. After agreeing to participate, the participants were approached by researchers who provided information about the research and explained the reason for the visit at home. Before obtaining participants’ informed consent, researchers phoned them at home and asked for their permission to visit at a convenient time. Participants who signed the consents were
interviewed for about 60–90 min 3 months after discharge from hospital. One open-ended interview with each participant was conducted by the first author, who immediately took notes, transcribed the tape recording and translated the text into English. The second author checked all the interviews to make sure that the meaning of the translation matched the Arabic– English version and the cultural transferability in language. The opening question for each interview was, ‘Can you tell me about your experience during the period after discharge from the hospital till this day.’ Subsequent ancillary questions were used to encourage participants to expand on their experiences and further explore meanings in the interview. Some of these questions were ‘Tell me more about your feelings and thoughts related to this experience. Can you clarify more how this experience affected you? Tell me more about the event.’ Data saturation was approached after conducting 16 interviews; however, interviewing process continued for further two participants until there were no new data describing the participants’ experiences after discharge from the ICU (Mason 2010). Ethical consideration
The study was approved by the University of Jordan’s ethical approval committee and ethical approvals were obtained from
Table 1 Participants’ demographics Pseudonumber
Age (years)
Gender
Type of ICU (M = medical; S = surgical)
No. of days in ICU
No. of days in hospital after transfer from ICU
Medical Dx
Marital status (M = married; S = single)
P1 P2 P3 P4 P5 P6 P7 P8 P9 P10 P11 P12 P13 P14 P15 P16 P17 P18
28 65 64 53 55 42 28 38 60 56 59 30 64 58 71 86 47 43
F F M F F F F F M M M M M F M F F F
M S M S S M S M M S S S M S S M M M
7 days 13 days 12 days 14 days 7 days 6 days 5 days 10 days 14 days 14 days 15 days 25 days 10 days 7 days 14 days 22 days 8 days 16 days
3 weeks 2 months 2 weeks 4 weeks 4 weeks 1 week 3 weeks 2 weeks 2 weeks
Systemic lupus erythematous Post-road traffic accident (RTA) Respiratory failure Kidney transplant Post-cardiac surgery Pulmonary oedema Post-cardiac surgery (coma) ARDS Pulmonary embolism Post-RTA Post-RTA Post-RTA Old stroke, uncontrolled DM hyperglycaemia Pulmonary embolism Fall down (unconscious) Respiratory acidosis (unconscious) Renal failure – drug overdose Multiple sclerosis
S M M M M M M M Divorced M M M Widow M Widow Widow M M
5 weeks 2 months 2 weeks 3 weeks 5 weeks 3 weeks 5 days 1 month
ARDS, acute respiratory distress syndrome; DM, diabetes mellitus; ICU, intensive care unit.
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both hospitals. As there is no standard national ethics committee in Jordan, all participants were informed about the study aim verbally and in writing, and all signed written consents. The participants were informed of voluntary participation, privacy and their rights to withdraw from the study as they wish without corrosiveness. Confidentiality and anonymity were assured.
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common themes were identified and a consensus on the final main themes was reached and demonstrated with samples from the texts. To achieve credibility, all the interviews were transcribed verbatim and translated into English and then the main themes were back-translated into Arabic (Zeilani & Seymour 2010, p. 178).
Results Data analysis
Data analysis was an iterative process that was initiated at an early stage of data collection and carried on throughout the study. The interview transcripts were analysed independently by two researchers (the study authors) using the qualitative latent content analysis method (Graneheim & Lundman 2004). This descriptive method emphasizes constantly deriving meanings from text with slight degree of interpretation and differences and similarities within codes and categories that characterize the study aim (Graneheim & Lundman 2004). Initially, the researchers read the whole manuscript several times to obtain a general feeling of the whole interview. This was followed by constructing meaning units from condensing the sentences and the participants’ words. The third step includes labelling condense meaning units and uniting them to make codes. In the fourth step, the codes were compared regarding their similarities and differences, and new subcategories and categories have emerged. In this stage, further analysis process was carried out in which the two researchers repeated the process for all transcripts and across all texts using the expression of the latent content analysis (Graneheim & Lundman 2004). The number of categories was reduced from 15 to 10, as some of the categories with similar meanings were collapsed and united into wider categories. Finally, the categories were grouped and the iterative analysis across all participants’ transcripts continued until three main themes were formulated. At the same time, the researchers negotiated their analysis processes many times to ensure that the systematic way in the analysis and the emergent themes were supported by the interview texts.
The demographics of the participants were described in Table 1. Three main themes emerged from the study: (1) new meaning of life, (2) different perspectives on the meaning of life, and (3) struggle for role identity. Each theme was presented and highlighted by indicative illustrations from the participants; in addition, the emergent themes and sub-themes are summarized in Table 2. New meaning of life
The experiences of illness took new dimensions as many of the participants started to think about how they appreciated the fact that they are still alive and at home as a gift from God ‘Allah’. The participants narrated that they gained new meanings to their lives; one aspect is related to keeping their spiritual values, while some of them learnt to thank ‘Allah’ for help, support and to praise Allah through prayer and making Dua˘ (the act of supplication or asking Allah for help). Others felt that they wanted to visit the holy places to show their obedience to Allah. This is clearly stated by one of the participants (P10): I cannot believe I am alive. In one time of my life I was placed with people who are nearly going to die, I thought that I would never get back home, cannot believe that. I am now with my family and this is all mercy from Allah. He gave me a second chance to live. I promise myself to stay close to Allah by praying and fasting. Some participants went further than self and started to advise other people to commit themselves to ‘Allah’. As one of the parTable 2 Theme and sub-themes
Rigor
To ensure trustworthiness of the study, the first author conducted all interviews. She has a wide experience in conducting qualitative interviews. Audit trail and reflexive memo were used throughout the data collection and data analysis process. The authors of this study are formally experienced clinical nurses in ICU who are recently instructors to university nursing students in the critical care field. They analysed the data independently at each level of the analysis process. Then, they met several occasions to discuss agreements and differences in the individual interpretations of the text and the coding process. Finally,
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Sub-themes
Themes
• • • • • • • •
New meaning of life
Saved by God Appreciate spiritual values Be more emotional Appreciate what they have in life Avoiding socialization Reunited with family Losing power Fear of getting back to illness
Different perspectives on the meaning of life Struggling for role identity
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ticipants (P16) mentioned that she would like to address other ICU patients and give them the following advice: My experience in the ICU motivated me to guide other people in the direction of good faith. Patients should thank Allah day and night, and always pray, not only in the time of sickness. Different perspectives on the meaning of life
Although many participants felt happy to resume their routine activities, the majority felt emotional when thinking that they had been ‘close to death’. However, this made them acquire a new look at what they used to take for granted; they decided to change their perception on what close people around them do. They talked about how they developed positive attitudes and understanding towards the things that they used to see see negatively before they were admitted to the ICU or during their illness. For example, one of the participants (P1) said:
A number of participants expressed that they avoid socialization with people trying to escape the memories of traumatic experiences; talking to people might provoke unpleasant memories. One of the participants (P18) stated: I do not enjoy being with people, usually I keep silent. I don’t want to be with them or to share their talks . . . they asked a lot . . . they asked about being in the unit . . . I feel that they sympathize with me . . . I do not want to remember that time. Struggling for role identity
Many participants felt relieved to be at home with their family and loved ones. They were pleased to resume their roles in the family as parents. Yet they felt that family members were overprotective and forbid them to resume normal life. Some of the participants explained that the family members were frightened to see them ill again and sometimes treated them as children. This was clearly explained by the participant (P15):
My experience gave me the courage to challenge everything, to see things from a different point of view. I mean, to look at things in a positive way. I promised myself that if I ever got out of that unit I would work hard at university, and be good with my parents. I used to complain if my mother asked me to study or interfere with my life . . . Now I understand it’s for my benefit.
Now I am home again with my family, I’m really glad to be with them and eager to take my role as a father. It’s good to have people who care about you and are afraid about your health, but sometimes I feel annoyed because they restrict my activities, they worry about my health. I feel suffocated and can’t act normally again. I’m fine and they should know that I’m back to take my position again.
Other participants felt thankful that they could eat, walk and interact with people again. They started to think and look positively towards having a normal life again. One participant (P12) said:
Other participants felt they lost their role among the family. They felt powerless and ignored. They declared that the family became dissociated and stayed away from them. The majority of participants said that family members did not involve them in their activities or decisions. It is not because of lack of love and attention but rather because they are getting used of having the participants absent from home. One participant (P11) said:
I can move now, before, I thought I will stay handicapped all my life. But never mind, I feel grateful just to have the ability to walk again. At one time when I was in the ICU and in the ward after that, I used to think “Why me, I’m a young man, this should not happen to me.” But I don’t feel that anymore, no.
I’m happy being back home, but I feel that my kids do not need me anymore. They use to take my opinion in every aspect of their lives, I can’t find this anymore. Now they consult their mother, and act as if I’m still in hospital.
On the contrary, other participants expressed negative emotions regarding going back to their ordinary life. They expressed having feelings of disappointment, exhaustion, losing interest and fears of becoming ill again. Some of them communicated sensations where they feel that they are still in the ICU, were connected to machines and have a sense of being restrained. One of the participants (P3) expressed:
On the contrary, some participants explained that they avoided being out of their home in crowds, and even avoided visiting relatives. They also disliked doing shopping or travelling. One participant explained being worried she would be ill again at any time and might collapse in the street. She found it safer to stay at home and call emergency services if needed.
I often wake up terrified because I had dreams of being in the unit with all the sounds and noises of machines. Even when I’m awake and with people, many things remind me of the unit, people talking, and images from the TV.
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Discussion This study presented the experiences of Jordanian survivors of recovery from critical illness 3 months after discharge from hospital. The findings showed that participants placed a great deal
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of emphasis on spiritual and religious values. Some participants longed to ‘get on’ with their life and celebrated that they were gifted to regain their life after being discharged home. Other participants had negative experiences of disappointment, losing interest and experiencing fear. Spirituality was apparent following critical illness experiences among all participants in this study. It seems that religious practices, such as prayer or making Dua˘, helped many patients cope with the new changes in their illness experiences. This is supported by Alcorn et al. (2010) who found that prayer was one of the shared spiritual rituals practised by many patients confronting serious illness and is a recurrent means by which religion and spirituality help patients endure illness. Also, it was found that people with serious illness who have well-defined spiritual beliefs are challenged by their health situation and enter the domain of spirituality to find meaning and purpose for their lives (O’Brian 2011). Connecting the patient in this study with their spiritual beliefs might give them a source or power (from Allah) and a new meaning for their illness. From the perspectives of Muslims, illness is perceived as the way that ‘Allah’ encourages the person to care of the body before it deteriorates (Kasule 1997). The patient’s attempts to express patience and tolerance of illness can be rewarded by God’s forgiveness and associated with high reward (Rasool 2000). In addition, thinking well of God is part of faith and having hope in God’s help in times of serious illness makes the process of illness and even dying more acceptable (Al-Shahri & Al-Khenaizan 2005). The second theme showed that emotional responses of ICU patients ranged from positive feeling towards getting back to their ordinary life to negative feeling that manifest themselves as fear, anxiety, depression and flashbacks of traumatic experiences in the ICU. Our participants were longing to move towards getting well and regain their role identity with their life. They appreciate the desire to be healthy again and regain independency in performing activities of daily living. This is in keeping with the research by Strahan & Brown (2005) who explored experiences of 10 ICU survivors 6 months after they left the ICU to their homes. The findings revealed that patients expressed positive regard to life, confidence that life must go on and moving from dependence on others into selfdependence. On the contrary, the findings revealed that some patients experienced negative emotional feelings. They exhibited signs of losing interest and fears of getting back to illness. The findings reported here resonate with other studies which confirmed that patients may experience having thoughts relating to traumatic experiences, which constantly recur and intrude their life and trigger severe distress (Brummel et al. 2014; Talisayon et al.
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2011). It seems that many events and images at home might remind the patients of their traumatic experiences in the ICU and induce flashbacks of bad memories. In this study, the participants expressed that social communications with people at home would trigger some old memories when people asked about their past experiences. Studies supported that those traumatic experiences might influence patients’ everyday lives by enduring enormous suffering that disturb their recovery (Löf et al. 2008; Talisayon et al. 2011). The third theme showed that although most patients felt ready to resume their role at home with family, they tended to feel a sense of powerlessness and perceived that they had lost their role within the family, being overprotected. This led to feeling of helplessness and frustration and was a threat to their identity. Previous studies in the same context reported that patients felt satisfied and happy to communicate with their family in the ICU or after transfer to the hospital wards (Löf et al. 2008; Zeilani & Seymour 2012). Cantlay (2012) explained that many ICU patients avoid communication with people around them to avoid remembering traumatic events in ICU. Regaining the previous role in the family and the restoration of self-identity needs to be understood as a basic need for these patients. Alpers et al. (2013) reported that during rehabilitation, the ICU patients tended to move on to the ordinary life when they felt that their physical strength had improved. The findings of this study showed many individual and culturally contextual patients’ needs reported by the ICU survivors according to their description. Recently, the International Council of Nurses and the International Alliance of Patients’ Organizations started a relationship to put patients health as priority and provide a universal health treatment for all patients with equal opportunities (Benton 2014). Caring for critically ill patients after discharge from the hospital is one area that needs close attention from the nurse leaders and health policy makers. However, limited numbers of guidelines or policies to meet the needs of this patient group have been implemented (NICE 2009).
Limitations This study has some limitations. Firstly, the sample was recruited from one city in Jordan. It might be that ICU patients who lived in rural areas have different experiences. Secondly, the data were collected 3 months after the participants were discharged home. There is a need for further longitudinal research into the ICU patient’s experiences over longer period of time such as 6 months to 2 years after discharge from the ICU to examine the change in the patients’ experiences over time.
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Conclusion The findings highlighted that ICU survivors thought that they had been rescued from death and gifted to regain their life; they valued their spiritual and religious rituals. The traumatic experiences in the ICU might hinder the patients’ optimal recovery; events in the surroundings might trigger the flashback emotions. The findings also suggest that patients felt that they lost their power, their independent role in the family and struggled to resume their role.
Implications for nursing and health policy This study emphasizes the importance of providing care according to the patient’s individual needs in the context of their cultural and spiritual milieu. The study indicates an important need to develop national follow-up services to be included in the hospitals’ policies that aim to identify patients suffering from post-traumatic stress reactions, offer supportive care and make referrals to counsellors or psychologists. This can speed up and enhance patient’s recovery after discharge from the ICU (Samuelson 2011; Talisayon et al. 2011). In many developing countries, and mainly in Jordan where healthcare services are limited to hospital settings, the most appropriate method of patient follow-up is to launch a community health nursing role. There is a need to provide training and educational programmes for the nurses on the patient’s issues after discharge from the hospital; this will enable the nurse to meet the patient’s individual needs and improve the quality of nurses’ care.
Acknowledgements Special thanks are due to the patients who participated in this study and invited the author to their homes.
Author contributions The second author (RQ) wrote the study proposal and was responsible for the data collection process, and the final draft and the revision of the manuscript. The first author (MA) wrote the literature review and was responsible for the analysis of the data.
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MSC, PhD
& R.S. Zeilani
MSC, PhD
Associate Professor, Clinical Department, Faculty of Nursing, The University of Jordan, Amman, Jordan
ABDALRAHIM M.S. & ZEILANI R.S. (2014) Jordanian survivors’ experiences of recovery from critical illness: a qualitative study. International Nursing Review 61, 570–577 Background: Despite the fact that a lot of patients consider their discharge from hospitals as a positive sign of progress towards regained health, many of them start suffering from physical, psychological and social problems after discharge from intensive care units. Aim: This study aims to describe the experiences of Jordanian survivors of critical illnesses 3 months after discharge from a hospital intensive care unit. Methods: A descriptive qualitative approach was used to involve 18 Jordanian patients from two hospitals in a major Jordanian city using open-ended interviews. Interview transcripts were analysed using content analysis method. Results: Three main themes have emerged from the data: (1) new meaning of life; (2) different perspectives on the meaning of life, and (3) struggle for role identity. Limitation: The sample was chosen from one city in Jordan; longitudinal study might help identify the change in patients’ experiences over time. Conclusion: Patients described the discharge from the intensive care unit as a means of rescue from death; they began to value their spiritual and religious rituals. Negative traumatic experiences hindered the patients’ recovery process. During recovery, patients struggled to resume their power and role in family. Implications for Nurses and Health Policy: This study emphasizes the importance of providing care according to the patient’s individual needs, related to their cultural and spiritual milieu; there is a need to develop follow-up services for ICU survivors within a national health policy. Further educational and training programmes in the patient’s issues after discharge from hospital are needed. This will definitely help nurses care after this patient group. Keywords: Critical Care, Discharge, Intensive Care, Jordan, Patient Experiences, Qualitative Research, Recovery
Introduction Experiencing daily life after critical illness creates many challenges and struggles for patients. Although most patients consider their discharge from hospital as a positive indication of progress towards regained health (Chiang 2011), many continue Correspondence address: Ruqayya S. Zeilani, Clinical Department, Faculty of Nursing, The University of Jordan, Amman 11942, Jordan; Tel: +9626 5355000/Ext: 23140; Fax: +9626 5300244; E-mail: [email protected].
© 2014 International Council of Nurses
to suffer from physical, psychological and existential problems (Cantlay 2012), whereas some of them find that quality of life was reduced for many months and years following critical illness (Williams & Leslie 2008). During the previous decade, qualitative research has shed light on how patients recall the experience of critical illness and intensive care. However, there was very little research – with a few exceptions – relating to the experiences or recollections of patients from non-Western cultures. This paper aims at
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describing the experiences of Jordanian survivors of critical illness during recovery 3 months after discharge from hospital to their home.
Background Experiences of critical illness and intensive care are said to have physical, emotional and social impacts on the patients’ lives (Kynoch et al. 2010). Previous studies have reported that the experience in intensive care unit (ICU) is traumatic for the majority of patients (Löf et al. 2008; Storli et al. 2008). These experiences had an impact on patients’ lives after they had been discharged home. Physical problems took many forms, which included physical pain, weakness, sleeping difficulty, loss of appetite, tiredness and shortness of breath (Choi et al. 2011; Deacon 2012). These symptoms had always been an obstacle to the patients’ abilities to perform daily living activities such as dressing, personal hygiene, cooking and cleaning (Agard et al. 2012). Many patients felt unsure of what to expect during their recovery; they also reported crucial need for detailed information and reassurance about the progress of their illness and regaining functional abilities so as to participate in normal activities of daily life (Agard et al. 2012; Deacon 2012; Lapum et al. 2011; Locsin & Kongsuwan 2013). Recent studies have emphasized the psychological experiences in the ICU; they showed that patients may experience panic, nightmares, flashbacks, anxiety and fear when flashing back their stay in ICU (Deacon 2012; Prescott & Iwashyna 2014; Storli et al. 2008). The majority of these studies focused on psychological problems such as severe anxiety, depression or delusional memories describing the experiences manifesting post-traumatic stress disorder. These problems have lasted for weeks and up to a year after discharge from the ICU (Brummel et al. 2014; Jackson et al. 2014; Svenningsen 2013). Samuelson (2011) described ICU memories in a total of 250 adult mechanically ventilated patients in Sweden, finding that 71% of patients who remembered their stay in the ICU experienced unpleasant memories such as nightmares, flashback of their time in the ICU that interrupted their optimal recovery after discharge. A number of studies examined the follow-up services of critically ill patients’ recollection of their memories and emotions while they were in recovery period. These studies provided an inside view of the meaning of their illness as they interpreted it, which included how their behaviour and perspectives about illness changed during the time of recovery (Herridge et al. 2008). Many studies of patients’ follow-up visits emphasized that the need for identifying patients’ rehabilitation has vital elements to recover after they had been in the ICU (Egerod et al. 2013; Williams & Leslie 2011). The National Institute for Health
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and Care Excellence (NICE) guidelines on rehabilitation following critical illness recommended individualized rehabilitation goals and a self-directed booklet for patient’s rehabilitation during the first 6 months of their discharge from the ICU to their homes (NICE 2009). According to the reviewed studies, there are a limited number of studies exploring the experiences of patients after discharge from hospital, focusing on the psychological impact on the patient’s life. The majority of research relates to Western culture, with only a few studies relating to Arabic culture. One of these studies explored Jordanian Muslim women patients’ experiences of suffering after transfer from ICU to general wards; the mentioned study showed how women had suffered from physical, social, spiritual and existential distressing experiences (Zeilani & Seymour 2010). Another study described Jordanian critically ill women’s experiences of bodily changes and how these experiences have developed over time (Zeilani & Seymour 2012). One of the basic roles of a nurse is to prepare patients well for this period. This paper contributes to nurses’ understanding of this little studied aspect of patients’ experiences.
Methods A descriptive qualitative design was applied with the aim to describe the participants’ experiences 3 months after being discharged from the ICU in the Jordanian context (Clandinin & Connelly 2000). The study used open-ended interviews of participants to identify main issues described by these participants from their own perspectives. This helps researchers explore their experiences, using their own words (Silverman 2013). To gain insight into participants’ experiences, content analysis of the text was used (Graneheim & Lundman 2004). Sample and settings
The study sample was drawn from three ICUs and involved patients who were discharged from a 10-bed medical and surgical (mixed) ICU in a private hospital and two ICUs with a capacity of 8 beds each and had medical and surgical patients at a governmental hospital in one main city in Jordan. All participants were interviewed in their own homes at a convenient time. Some participants invited their family members (daughter or wife) to serve coffee or tea as a part of the Jordanian cultural tradition. Participants were selected purposefully to provide rich information about their experiences of recovery from critical illness (Morse 1995). The aim was to obtain a deeper understanding of critically ill patients’ recovery after spending more than 24 h in the ICU, in hospital wards and being at home for at least 3 months after discharge. Inclusion criteria include participants
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above 18 years, can comprehend, able to speak Arabic language and willing to invite researchers to their home. Twenty-three potential participants who met the inclusion criteria were approached to take part according to their experience in the ICU. Those who agreed to participate voluntarily (19 participants) were included consecutively, irrespective of the diagnosis, gender and the length of stay in the ICU, of whom one withdrew from the interview due to travelling outside the country. Therefore, 18 participants, composed of 11 women and 7 men, aged between 28 and 86 years (mean = 49 years), shared their experiences 3 months after discharge. The participants’ demographics are summarized in Table 1. Recruitment and data collection
Data collection process was conducted from January to June 2013. All participants were contacted while they were at hospital by the ICU registered nurses. After agreeing to participate, the participants were approached by researchers who provided information about the research and explained the reason for the visit at home. Before obtaining participants’ informed consent, researchers phoned them at home and asked for their permission to visit at a convenient time. Participants who signed the consents were
interviewed for about 60–90 min 3 months after discharge from hospital. One open-ended interview with each participant was conducted by the first author, who immediately took notes, transcribed the tape recording and translated the text into English. The second author checked all the interviews to make sure that the meaning of the translation matched the Arabic– English version and the cultural transferability in language. The opening question for each interview was, ‘Can you tell me about your experience during the period after discharge from the hospital till this day.’ Subsequent ancillary questions were used to encourage participants to expand on their experiences and further explore meanings in the interview. Some of these questions were ‘Tell me more about your feelings and thoughts related to this experience. Can you clarify more how this experience affected you? Tell me more about the event.’ Data saturation was approached after conducting 16 interviews; however, interviewing process continued for further two participants until there were no new data describing the participants’ experiences after discharge from the ICU (Mason 2010). Ethical consideration
The study was approved by the University of Jordan’s ethical approval committee and ethical approvals were obtained from
Table 1 Participants’ demographics Pseudonumber
Age (years)
Gender
Type of ICU (M = medical; S = surgical)
No. of days in ICU
No. of days in hospital after transfer from ICU
Medical Dx
Marital status (M = married; S = single)
P1 P2 P3 P4 P5 P6 P7 P8 P9 P10 P11 P12 P13 P14 P15 P16 P17 P18
28 65 64 53 55 42 28 38 60 56 59 30 64 58 71 86 47 43
F F M F F F F F M M M M M F M F F F
M S M S S M S M M S S S M S S M M M
7 days 13 days 12 days 14 days 7 days 6 days 5 days 10 days 14 days 14 days 15 days 25 days 10 days 7 days 14 days 22 days 8 days 16 days
3 weeks 2 months 2 weeks 4 weeks 4 weeks 1 week 3 weeks 2 weeks 2 weeks
Systemic lupus erythematous Post-road traffic accident (RTA) Respiratory failure Kidney transplant Post-cardiac surgery Pulmonary oedema Post-cardiac surgery (coma) ARDS Pulmonary embolism Post-RTA Post-RTA Post-RTA Old stroke, uncontrolled DM hyperglycaemia Pulmonary embolism Fall down (unconscious) Respiratory acidosis (unconscious) Renal failure – drug overdose Multiple sclerosis
S M M M M M M M Divorced M M M Widow M Widow Widow M M
5 weeks 2 months 2 weeks 3 weeks 5 weeks 3 weeks 5 days 1 month
ARDS, acute respiratory distress syndrome; DM, diabetes mellitus; ICU, intensive care unit.
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both hospitals. As there is no standard national ethics committee in Jordan, all participants were informed about the study aim verbally and in writing, and all signed written consents. The participants were informed of voluntary participation, privacy and their rights to withdraw from the study as they wish without corrosiveness. Confidentiality and anonymity were assured.
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common themes were identified and a consensus on the final main themes was reached and demonstrated with samples from the texts. To achieve credibility, all the interviews were transcribed verbatim and translated into English and then the main themes were back-translated into Arabic (Zeilani & Seymour 2010, p. 178).
Results Data analysis
Data analysis was an iterative process that was initiated at an early stage of data collection and carried on throughout the study. The interview transcripts were analysed independently by two researchers (the study authors) using the qualitative latent content analysis method (Graneheim & Lundman 2004). This descriptive method emphasizes constantly deriving meanings from text with slight degree of interpretation and differences and similarities within codes and categories that characterize the study aim (Graneheim & Lundman 2004). Initially, the researchers read the whole manuscript several times to obtain a general feeling of the whole interview. This was followed by constructing meaning units from condensing the sentences and the participants’ words. The third step includes labelling condense meaning units and uniting them to make codes. In the fourth step, the codes were compared regarding their similarities and differences, and new subcategories and categories have emerged. In this stage, further analysis process was carried out in which the two researchers repeated the process for all transcripts and across all texts using the expression of the latent content analysis (Graneheim & Lundman 2004). The number of categories was reduced from 15 to 10, as some of the categories with similar meanings were collapsed and united into wider categories. Finally, the categories were grouped and the iterative analysis across all participants’ transcripts continued until three main themes were formulated. At the same time, the researchers negotiated their analysis processes many times to ensure that the systematic way in the analysis and the emergent themes were supported by the interview texts.
The demographics of the participants were described in Table 1. Three main themes emerged from the study: (1) new meaning of life, (2) different perspectives on the meaning of life, and (3) struggle for role identity. Each theme was presented and highlighted by indicative illustrations from the participants; in addition, the emergent themes and sub-themes are summarized in Table 2. New meaning of life
The experiences of illness took new dimensions as many of the participants started to think about how they appreciated the fact that they are still alive and at home as a gift from God ‘Allah’. The participants narrated that they gained new meanings to their lives; one aspect is related to keeping their spiritual values, while some of them learnt to thank ‘Allah’ for help, support and to praise Allah through prayer and making Dua˘ (the act of supplication or asking Allah for help). Others felt that they wanted to visit the holy places to show their obedience to Allah. This is clearly stated by one of the participants (P10): I cannot believe I am alive. In one time of my life I was placed with people who are nearly going to die, I thought that I would never get back home, cannot believe that. I am now with my family and this is all mercy from Allah. He gave me a second chance to live. I promise myself to stay close to Allah by praying and fasting. Some participants went further than self and started to advise other people to commit themselves to ‘Allah’. As one of the parTable 2 Theme and sub-themes
Rigor
To ensure trustworthiness of the study, the first author conducted all interviews. She has a wide experience in conducting qualitative interviews. Audit trail and reflexive memo were used throughout the data collection and data analysis process. The authors of this study are formally experienced clinical nurses in ICU who are recently instructors to university nursing students in the critical care field. They analysed the data independently at each level of the analysis process. Then, they met several occasions to discuss agreements and differences in the individual interpretations of the text and the coding process. Finally,
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Sub-themes
Themes
• • • • • • • •
New meaning of life
Saved by God Appreciate spiritual values Be more emotional Appreciate what they have in life Avoiding socialization Reunited with family Losing power Fear of getting back to illness
Different perspectives on the meaning of life Struggling for role identity
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ticipants (P16) mentioned that she would like to address other ICU patients and give them the following advice: My experience in the ICU motivated me to guide other people in the direction of good faith. Patients should thank Allah day and night, and always pray, not only in the time of sickness. Different perspectives on the meaning of life
Although many participants felt happy to resume their routine activities, the majority felt emotional when thinking that they had been ‘close to death’. However, this made them acquire a new look at what they used to take for granted; they decided to change their perception on what close people around them do. They talked about how they developed positive attitudes and understanding towards the things that they used to see see negatively before they were admitted to the ICU or during their illness. For example, one of the participants (P1) said:
A number of participants expressed that they avoid socialization with people trying to escape the memories of traumatic experiences; talking to people might provoke unpleasant memories. One of the participants (P18) stated: I do not enjoy being with people, usually I keep silent. I don’t want to be with them or to share their talks . . . they asked a lot . . . they asked about being in the unit . . . I feel that they sympathize with me . . . I do not want to remember that time. Struggling for role identity
Many participants felt relieved to be at home with their family and loved ones. They were pleased to resume their roles in the family as parents. Yet they felt that family members were overprotective and forbid them to resume normal life. Some of the participants explained that the family members were frightened to see them ill again and sometimes treated them as children. This was clearly explained by the participant (P15):
My experience gave me the courage to challenge everything, to see things from a different point of view. I mean, to look at things in a positive way. I promised myself that if I ever got out of that unit I would work hard at university, and be good with my parents. I used to complain if my mother asked me to study or interfere with my life . . . Now I understand it’s for my benefit.
Now I am home again with my family, I’m really glad to be with them and eager to take my role as a father. It’s good to have people who care about you and are afraid about your health, but sometimes I feel annoyed because they restrict my activities, they worry about my health. I feel suffocated and can’t act normally again. I’m fine and they should know that I’m back to take my position again.
Other participants felt thankful that they could eat, walk and interact with people again. They started to think and look positively towards having a normal life again. One participant (P12) said:
Other participants felt they lost their role among the family. They felt powerless and ignored. They declared that the family became dissociated and stayed away from them. The majority of participants said that family members did not involve them in their activities or decisions. It is not because of lack of love and attention but rather because they are getting used of having the participants absent from home. One participant (P11) said:
I can move now, before, I thought I will stay handicapped all my life. But never mind, I feel grateful just to have the ability to walk again. At one time when I was in the ICU and in the ward after that, I used to think “Why me, I’m a young man, this should not happen to me.” But I don’t feel that anymore, no.
I’m happy being back home, but I feel that my kids do not need me anymore. They use to take my opinion in every aspect of their lives, I can’t find this anymore. Now they consult their mother, and act as if I’m still in hospital.
On the contrary, other participants expressed negative emotions regarding going back to their ordinary life. They expressed having feelings of disappointment, exhaustion, losing interest and fears of becoming ill again. Some of them communicated sensations where they feel that they are still in the ICU, were connected to machines and have a sense of being restrained. One of the participants (P3) expressed:
On the contrary, some participants explained that they avoided being out of their home in crowds, and even avoided visiting relatives. They also disliked doing shopping or travelling. One participant explained being worried she would be ill again at any time and might collapse in the street. She found it safer to stay at home and call emergency services if needed.
I often wake up terrified because I had dreams of being in the unit with all the sounds and noises of machines. Even when I’m awake and with people, many things remind me of the unit, people talking, and images from the TV.
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Discussion This study presented the experiences of Jordanian survivors of recovery from critical illness 3 months after discharge from hospital. The findings showed that participants placed a great deal
Recovery from critical illness
of emphasis on spiritual and religious values. Some participants longed to ‘get on’ with their life and celebrated that they were gifted to regain their life after being discharged home. Other participants had negative experiences of disappointment, losing interest and experiencing fear. Spirituality was apparent following critical illness experiences among all participants in this study. It seems that religious practices, such as prayer or making Dua˘, helped many patients cope with the new changes in their illness experiences. This is supported by Alcorn et al. (2010) who found that prayer was one of the shared spiritual rituals practised by many patients confronting serious illness and is a recurrent means by which religion and spirituality help patients endure illness. Also, it was found that people with serious illness who have well-defined spiritual beliefs are challenged by their health situation and enter the domain of spirituality to find meaning and purpose for their lives (O’Brian 2011). Connecting the patient in this study with their spiritual beliefs might give them a source or power (from Allah) and a new meaning for their illness. From the perspectives of Muslims, illness is perceived as the way that ‘Allah’ encourages the person to care of the body before it deteriorates (Kasule 1997). The patient’s attempts to express patience and tolerance of illness can be rewarded by God’s forgiveness and associated with high reward (Rasool 2000). In addition, thinking well of God is part of faith and having hope in God’s help in times of serious illness makes the process of illness and even dying more acceptable (Al-Shahri & Al-Khenaizan 2005). The second theme showed that emotional responses of ICU patients ranged from positive feeling towards getting back to their ordinary life to negative feeling that manifest themselves as fear, anxiety, depression and flashbacks of traumatic experiences in the ICU. Our participants were longing to move towards getting well and regain their role identity with their life. They appreciate the desire to be healthy again and regain independency in performing activities of daily living. This is in keeping with the research by Strahan & Brown (2005) who explored experiences of 10 ICU survivors 6 months after they left the ICU to their homes. The findings revealed that patients expressed positive regard to life, confidence that life must go on and moving from dependence on others into selfdependence. On the contrary, the findings revealed that some patients experienced negative emotional feelings. They exhibited signs of losing interest and fears of getting back to illness. The findings reported here resonate with other studies which confirmed that patients may experience having thoughts relating to traumatic experiences, which constantly recur and intrude their life and trigger severe distress (Brummel et al. 2014; Talisayon et al.
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2011). It seems that many events and images at home might remind the patients of their traumatic experiences in the ICU and induce flashbacks of bad memories. In this study, the participants expressed that social communications with people at home would trigger some old memories when people asked about their past experiences. Studies supported that those traumatic experiences might influence patients’ everyday lives by enduring enormous suffering that disturb their recovery (Löf et al. 2008; Talisayon et al. 2011). The third theme showed that although most patients felt ready to resume their role at home with family, they tended to feel a sense of powerlessness and perceived that they had lost their role within the family, being overprotected. This led to feeling of helplessness and frustration and was a threat to their identity. Previous studies in the same context reported that patients felt satisfied and happy to communicate with their family in the ICU or after transfer to the hospital wards (Löf et al. 2008; Zeilani & Seymour 2012). Cantlay (2012) explained that many ICU patients avoid communication with people around them to avoid remembering traumatic events in ICU. Regaining the previous role in the family and the restoration of self-identity needs to be understood as a basic need for these patients. Alpers et al. (2013) reported that during rehabilitation, the ICU patients tended to move on to the ordinary life when they felt that their physical strength had improved. The findings of this study showed many individual and culturally contextual patients’ needs reported by the ICU survivors according to their description. Recently, the International Council of Nurses and the International Alliance of Patients’ Organizations started a relationship to put patients health as priority and provide a universal health treatment for all patients with equal opportunities (Benton 2014). Caring for critically ill patients after discharge from the hospital is one area that needs close attention from the nurse leaders and health policy makers. However, limited numbers of guidelines or policies to meet the needs of this patient group have been implemented (NICE 2009).
Limitations This study has some limitations. Firstly, the sample was recruited from one city in Jordan. It might be that ICU patients who lived in rural areas have different experiences. Secondly, the data were collected 3 months after the participants were discharged home. There is a need for further longitudinal research into the ICU patient’s experiences over longer period of time such as 6 months to 2 years after discharge from the ICU to examine the change in the patients’ experiences over time.
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Conclusion The findings highlighted that ICU survivors thought that they had been rescued from death and gifted to regain their life; they valued their spiritual and religious rituals. The traumatic experiences in the ICU might hinder the patients’ optimal recovery; events in the surroundings might trigger the flashback emotions. The findings also suggest that patients felt that they lost their power, their independent role in the family and struggled to resume their role.
Implications for nursing and health policy This study emphasizes the importance of providing care according to the patient’s individual needs in the context of their cultural and spiritual milieu. The study indicates an important need to develop national follow-up services to be included in the hospitals’ policies that aim to identify patients suffering from post-traumatic stress reactions, offer supportive care and make referrals to counsellors or psychologists. This can speed up and enhance patient’s recovery after discharge from the ICU (Samuelson 2011; Talisayon et al. 2011). In many developing countries, and mainly in Jordan where healthcare services are limited to hospital settings, the most appropriate method of patient follow-up is to launch a community health nursing role. There is a need to provide training and educational programmes for the nurses on the patient’s issues after discharge from the hospital; this will enable the nurse to meet the patient’s individual needs and improve the quality of nurses’ care.
Acknowledgements Special thanks are due to the patients who participated in this study and invited the author to their homes.
Author contributions The second author (RQ) wrote the study proposal and was responsible for the data collection process, and the final draft and the revision of the manuscript. The first author (MA) wrote the literature review and was responsible for the analysis of the data.
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