Identifying Patients' Support Needs Following Critical Illness

A Scoping Review of the Qualitative Literature

J. King; B. O'Neill; P. Ramsay; M. A. Linden; A. Darweish Medniuk; J. Outtrim; B. Blackwood

Disclosures

Crit Care. 2019;23(187) 

In This Article

Results

We identified 3035 papers. After removing duplicates and non-eligible studies, 32 studies were included in the review (see Figure 3). Table 1 presents the study characteristics. Study type methods included phenomenology (n = 6), grounded theory (n = 4), interpretive (n = 1), descriptive/narrative (n = 16) and survey (n = 4). Sample sizes ranged from five to 222, and the total number of participants in included studies was 702. Studies were conducted in the UK (n = 12, 38%), Australia (n = 5, 16%), the USA (n = 4, 13%), Canada (n = 2, 6%) and Sweden (n = 3, 8%); one study each (3%) conducted in Denmark, France, Jordan, Hong Kong and New Zealand, and one multinational study with participants from Australasia, Canada, the UK and the USA. Studies reported data either at single or multiple time points spanning the trajectory from ICU to post-discharge greater than 6 months (see Table 2).

Figure 3.

Review flow chart

Findings

We report findings in the four categories of support (i.e. information, emotional, instrumental, appraisal) with reference to the phases of the TIR framework.

Informational needs. Informational needs changed across the care continuum from event/diagnosis (ICU admission) to the adaptation phase.

Event/diagnosis (ICU admission). In ICU, patients' informational needs centred on the events surrounding the ICU admission, diagnosis, treatment and prognosis.[25,28] Reflecting the acuity of illness accompanied by prolonged use of sedation to facilitate treatment (e.g. mechanical ventilation) and the prevalence of delirium, patients reported memory loss and a sense of being 'drugged'.[24,28–32] Patients reported a need for information to enable them to understand the events surrounding their ICU admission and an understanding of their current health status, including their inability to speak and think clearly.[24,28] Patients struggled, however, to integrate their own fragmented memories with factual information provided by ICU staff.[28] A key support need reported during this phase was for repeated transfer of clear, easily understandable information from healthcare staff to patients and families.[25,28]

Stabilisation (ward care). The need for continued, clear communication was also apparent in the transition from ICU to the hospital ward. Patients reported a lack of communication between ICU and ward staff to facilitate continuity of care.[33–35] Although ICU discharge summaries were helpful, patients felt the information was too basic and needed more specific details, tailored to their unique presentation.[33,34,36] When information was provided, patients recalled periods of memory loss and not knowing where they were.[36] While some patients attributed this to not receiving information, others indicated that there was an element of forgetting because everything was 'blurred' and highlighted the need for continual repetition of information and orientation.[37]

Preparation (ward care). As patients progressed towards preparation for hospital discharge, their informational needs changed, to focus on progress made since ICU discharge and the treatments and medications needed to ensure ongoing recovery.[25] The reported information needs continued to focus on the illness event and prognosis, as patients began to realise the nature, severity and short and long-term implications of their critical illness.[25]

Implementation/adaptation (discharge home). At home, information needs continued to focus on understanding their critical illness, but with a greater emphasis on coping with the long-term sequelae and stress. Return visits to the ICU, seeing the room they had occupied, and using an ICU diary were seen as beneficial by some patients in filling in the gaps, but not for others.[38] Patients wanted information delivered in a more permanent fashion, such as pamphlets or booklets for ongoing review.[25] Patients indicated a sense of wanting more information, but not knowing where to obtain it.[24,25] They needed information and education to be extended to family members,[39] particularly as questions about their experience and medical condition persisted long after returning to the community.[24] The need for the full 'story' was expressed by survivors to enable them to make sense of, and reclaim ownership of, their lives.[28]

Emotional Needs

Event/diagnosis (ICU admission). Patients experienced a wide array of emotional reactions that changed over time. Recalled emotions prior to intubation in the ICU were terror, dread, uncertainty and facing imminent death.[31,40] Patients described regaining consciousness after a life-threatening condition as confusing, shattering and a feeling of emptiness.[40] Initial reactions included death anxiety,[5,28,31,32,40–43] feelings of loss of control,[30,37,40] powerlessness,[29] panic and abandonment.[5,44] Fear and anxiety were common reactions to being physically restrained, endotracheal suctioning, chest physiotherapy, nasogastric tune insertion, the inability to communicate and having a tracheostomy.[40,41,45]

Needs expressed during the early initial stages included the need for comfort[29] in words and touch[30] and the support of family.[25,28,32,44–47] The need for family support and attendance extended across time. Within the ICU, knowing relatives could be contacted easily helped patients to develop a coping strategy[46] and the family support led to feelings of happiness and security.[25]

Stabilisation (ward care). Not surprisingly, the need that patients expressed for security and familiarity was often jeopardised when they transitioned from the familiar environment of the ICU to the new environment of the ward. Relocation anxiety was experienced by some patients when transferred to the ward,[37] despite the presence of critical care outreach follow-up for some patients.[35,48] Conversely, some patients experienced a sense of detachment, compliance and acceptance resulting in contentment: they had entered a chain of events over which they had no control.[49] Patients cited difficulty adjusting to the change from a one nurse to one patient ratio in the ICU to a lower nurse to patient ratio in the ward.[49] The ratio change caused patients to feel abandoned and vulnerable because of the loss of closer relationships with nurses[50,51] as well as feeling unimportant,[50] isolated and neglected.[51] In addition, many patients felt depressed because of a perception of poor physical progress following transfer.[35,49]

Implementation/adaptation (discharge home). Patients found the first few months after hospital discharge the most difficult and felt insecure about no longer being in the safe hospital environment.[52] Following discharge, vivid memories of ICU experiences involving terrifying dreams and flashbacks,[41,42,50] and fear and worry about the complexities of their illness persisted for months.[24,25] During this time, patients needed a lot of reassurance. Yet, one study reported that patients were reticent about seeking telephone support from ICU follow-up clinic nurses, even though the nurses had urged them to do so, due to a presumption that they were busy or had forgotten them.[52] The lack of contact resulted in some patients feeling abandoned after hospital discharge,[52] and where scheduled follow-up ICU visits were provided, patients reported these were preceded with feelings of nervousness and tension brought on by unpleasant memories.[38] Follow-up sessions provided some security in allowing opportunity to ask questions and gain knowledge of their stay in the ICU.[38]

Variability in the emotional experiences of survivors was common on discharge and was influenced by the availability of support at home. Patients with no primary caregivers experienced more anxiety and fear, while those with family members and support networks were more optimistic and positive about their discharge.[25] Furthermore, other patients felt a loss of role within the family and feelings of being dissociated and not involved in family decisions[5] and helplessness.[53]

Adaptation (discharge home). Patients' reported that their re-integration back into the community caused increased stress and was a source of depression.[25] Some expressed a sense of isolation as they avoided socialising, such as visiting relatives because it provoked unpleasant memories.[5] As a result, some patients expressed a need for mechanisms to allow an emotional outlet for themselves and their family members, including the support of community-based healthcare providers.[25] Across a few studies, patients felt that, unlike their physical health, their emotional and psychological health had received little attention and would have valued psychological counselling, more support from community-based healthcare providers and support in re-building psychological independence and confidence.[25,39,46,52] Some patients reported they benefited from a support group where they had met others who truly understood the experience.

Instrumental Needs

Event/diagnosis (ICU admission). During their time in ICU, patients reported discomfort arising from a debilitating lack of sleep, noise, fatigue, pain and anxiety.[29,31,32,35,40,41] Key instrumental needs reported by patients were for personal care, hygiene and comfort, particularly relating to bathing, nutrition and pain relief.[31,54] As patients moved to the ward, they reported a need to progress from dependent to independent care, but needed adequate professional support to achieve that. Chiang et al.[46] summarised patients' views on needing structured continuity of care, such as that delivered by a critical care outreach service, and sufficient professional support before discharge home to the community. Additionally, patients in one study noted that they rarely experienced continuity of medical care.[24]

Stabilisation (ward care). Transferring from the ICU to the ward resulted in patients struggling to cope with basic care previously provided by nurses in the ICU.[49,51] Some patients assumed that they had to undertake their own basic care either because ward nurses were 'too busy' or because communication between the ICU and ward had broken down and ward staff were unaware of the patient's support needs.[51] Although some patients accepted they needed to be more independent on the ward, they still needed considerable physical help from either the staff[33,35] or family carers.[51]

Implementation/adaptation (discharge home). A dominant theme across all TIR phases and particularly in the post ICU discharge period was the profound and disturbing physical and cognitive disability experienced by patients. For some, there were trauma-related disabilities such as loss of a limb or paralysis,[41] loss of muscle strength and tone resulting in inability to stand,[29] and decreased strength and endurance.[24,39] Patients reported they struggled for independence to re-establish their premorbid physical strength.[40,55] Lesser-reported functional issues were problems with vision, speech and hearing.[53] Substantial, persistent cognitive deficits were also reported,[41,53,55] with a need for continued observation and support from caregivers to prevent harm due to patient forgetfulness.[41] Patients with cognitive impairment had to relearn performing basic behaviours in personal care and household activities; and at 1 year, goals shifted to higher level functioning such as planning, organisation, driving and returning to work.[55]

Patients reported feelings of being a burden resulting from their lack of independence, and felt that their weakened state compromised their ability to lead a normal life.[24] Patients reported they needed physical support at home from community-based healthcare providers to assist them to become independent.[25,43] They cited the need for earlier follow-up appointments where these were available, rather than months later.[52] Even after 1-year substantial training, many patients had not returned to their pre-ICU level of strength and activity.[55]

Changes in living status due to increased reliance on support from family and friends, inadequate financial assistance and reduced family income were problems cited by some survivors.[53] Swedish patients also described the need for support from society to find appropriate work to prevent falling into financial difficulties with paying housing and hospital bills.[43]

Appraisal Needs

Stabilisation (ward care). Appraisal needs were not evident during the ICU stay, but following transfer from ICU, many patients noted that ward staff knew little about them and therefore could not provide feedback on how they were progressing.[51] Some patients concluded this was due to lack of communication between the ICU and the ward.[51] Others expressed positive aspects of the transfer out of ICU; feeling this indicated an improvement in their recovery.[37]

Following ICU discharge, patients could appraise how far they had come, citing feelings of doing well since their ICU stay,[44,45] and feeling special to have survived critical illness.[42,45] In the study by Jones[42] which included only males, patients were able to identify their strong points and capitalise on them, but others failed to appreciate the mental and physical transformation required and how long this took after critical illness.[41,45] Palesjo et al.[43] described the critical illness recovery process as a time when patients struggled to return to ordinary life, strived for reconciliation and learned to live in the moment in a changed body. In some cases, patients described their visible and invisible body marks as continuous reminders of their critical condition[43] and these often resulted in family relationship strain and change.[41] Life adjustment to the changes occurring after ICU required building up defence and coping mechanisms such as active coping, positive reframing, humour, acceptance, optimism, hope, self-sufficiency, goal-setting and spirituality.[41,44]

Patients stated they benefited from meeting others who had been through the ICU experience and understood the challenges they were addressing.[39,53] They expressed an overwhelming desire to know that what they experienced was 'normal', and that it took a long time and should not be concerned with slow progress.[38,39,52] Patients gained comfort from identifying with others' experiences, and this helped normalise their own experiences.[53]

Spiritual needs. An additional category of spiritual support needs emerged from the literature and was not necessarily synonymous with religious needs. Three studies reported patients' views about having near death experiences and the need to believe in a higher entity.[5,32,49] A study conducted in Jordan reported survivors needing to thank and praise Allah for their recovery, making Dua (the act of supplication or asking Allah for help), and wishing to visit holy places to show obedience to Allah.[5] Similarly, Magarey and McCutcheon[32] reported that patients described a spiritual experience of moving from powerlessness to a sense of purpose and acceptance in their recovery. For some patients transferring from the ICU to the ward resulted in them realising that 'I could have died'.[32,49] This traumatic realisation caused many participants to revisit the meaning of their lives and make each day count.[49]

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