In addition to the paucity of patient-centred research concerned with recovery from cardiac arrest, it is evident that there is a similarly limited voice from the critically ill, but there are notable exceptions. The final part of this literature review has considered the publications that have reflected the patient experience of recovery from illnesses associated with cardiac arrest.
Wiles (1998) conducted in-depth interviews with a group of 25 patients who were recovering from myocardial infarction. The two main objectives of the study were to generate data about people’s experiences of recovering from a heart attack and their experience of the care they received thereafter, which was conducted to provide an improved, better informed recovery programme. The participants were interviewed a few weeks following discharge from hospital and then again about five months later. The findings from the initial interviews indicated that patients had feelings of disbelief and surprise at having suffered a heart attack as it was something that they had not foreseen, even though many understood that a heart attack was usually a sudden event.
During the in-hospital period of recovery patients had been provided with an information leaflet entitled ‘Back to Normal’, which had been published and provided by the British Heart Foundation. In addition to this reading material, cardiac liaison nurses and other healthcare professionals provided more generalised information about recovery and indicated to patients that they should make a full recovery after about three months. Whilst it was interesting to note that six patients had no recollection of receiving said input about their recovery, those that did recall receiving information and support, the information that they received was at odds with their personal views and expectations. Generally, patients appeared to have a pessimistic view regarding their recovery, as they would have expected to die or at least be permanently debilitated after having a heart attack, but many patients were surprised by how quickly they recovered and how well they felt. Accordingly, they came to terms with this by regarding their heart attack as mild (rather than serious). However, those who had suffered cardiac arrest as a consequence of the heart attack did indeed perceive that they had experienced a serious heart attack.
At the second interview patients considered that they had fully recovered if they reached the three-month period without any further symptoms or reliance upon healthcare interventions (other than routine follow up). Those who were reliant upon further healthcare interventions did not consider themselves fully recovered and both groups recognised that lifestyle adjustments would be necessary, some of the more seriously affected patients endured considerable physical impairment and their heart attack was seen as life-changing. With the exception of the most severely affected (who perceived that they were dying) all intended to make lifestyle adjustments in order to minimise the risks of further heart attacks.
Another study of patients recovering from myocardial infarction (MI) was published in Sweden by Eriksson, Asplund and Svedlund (2009), who conducted a series of in- depth interviews with 15 patients and their partners 4 – 8 weeks following discharge from hospital with a view to capturing their views and experiences of going home after MI. The main results revealed that the majority of patients and their partners viewed the return home from hospital as a major recovery milestone that signified a return to
normal life and feelings of security, safety and a return to ordinary social activities. However, for others they were less confident and retained anxieties about their physical frailties and vulnerability and the work offered helpful insights towards improved,
patient-centred discharge planning.
Rier (2000) discussed his own experiences within the context of his involvement in his care and the issues he experienced with regards to the information disclosed to him. His review of the literature provided useful clarity in that he differentiated critical illness from the critical phase of illness, which implied that this was a necessary component in the patient’s recovery. Rier was keen to state that the critically ill have a story to tell and indicated that it was one that had not previously been told from the perspective of the patient and provided uniquely informative insights that are pertinent to the research participants in this study who collapsed into unconsciousness as their heart ceased to beat effectively and arrested. Rier identified that his rapid deterioration offered him little or no time to contemplate or ready himself for what was to happen. In his recovery Rier also noted that barring his limited contact with hospital visitors, his social interactions were almost entirely confined to engaging with the healthcare professionals who provided his medical and nursing care, upon whom he was largely dependent.
Rier’s work goes some way to accommodate and position Bury’s (1982)
biographical disruption work into an acute recovery model. But, one must also remain mindful that Rier was in a dual role, as a patient and a medical sociologist and cannot be considered to be a layperson. Bury (1982) had recognised how patients had experienced illness in that it disturbed and disrupted the structure of the sufferer’s everyday life. Whilst, he reported that many patients with chronic illness did at times conform to the Parsons model of the ‘sick role’ (Parsons, 1975), many subtly asserted their independence and concealed their illness, moreover they were capable of
developing and utilising their own coping strategies, incorporating elements of self- determined rehabilitation; some may have even chose to completely opt out of formal rehabilitation programmes.
In her commissioned review, Lawton (2003) brought together the work of Bury with that of Charmaz (1983) and Williams (1984), all of whom who published similar insights into patient’s experiences of living with chronic illness. Charmaz (1983) conceptualised the loss of self as a psychological deficit that was associated with isolation, dependency and loneliness that often accompanied debilitating chronic illness. Williams (1984), who used narrative reconstruction to add a temporal, real-world context that considered the array of positive assets that people with long-standing chronic illness used to make sense of their position in the world and to re-establish a degree of order to their lives in the wake of their biographical disruption.
In terms of how patients are able to develop a sense of coherence, working in the field of health promotion, Antonovsky (1996) argued that people in (a health orientated) crisis develop a resilience that helps them to move towards a more stable healthy state and away from less stable, illness state. Antonovsky developed his positive assets model of resilience from two key constructs; generalised resistance resources and a sense of coherence. As a contrast to the origins of illness (pathogenesis) Antonovsky conceptualised the origins of health, which he labelled salutogenesis.
Antonovsky (1996) suggested that a person’s generalised resistance resources are a positive stress response to a cascade of internal and external stimuli that are sub- consciously constructed from their personal life experiences and incorporates an array of cognitive, physical, psychological, cultural and / or societal factors. Furthermore,
Antonovsky suggested that it is a person’s ability to harness and utilise the generalised resistance resources that determines the strength of their sense of coherence that subsequently influences their return to health. In other words, a person that is motivated to cope (meaningfulness), understands the challenge (comprehensibility) and has the resources available (manageability) is one that is more likely to return to health.
Prinjha, Field and Rowan (2009) undertook a qualitative study of the experiences of patients attending follow-up clinics after a period recovering in ICU. Despite the lack of an evidence-base, ICU follow-up services had been strongly recommended and introduced into policy in the early 2000’s as a support to patients who may have experienced physical and / or psychological difficulties after discharge from ICU. Additional service evaluation had also been planned and was seen as a key
performance indicator of ICU as a service. Thirty-four patients were interviewed as part of the Healthtalkonline project (http://www.healthtalk.org) and all had been admitted to ICU as emergency cases, notably, none had experienced cardiac arrest.
The authors conducted a grounded approach to the analysis of the transcripts and remarked that the emergent themes produced data that had not previously featured in health related quality of life assessment tools. The four key themes of the patients’ experiences were continuity of care, the receipt of information, the importance of expert reassurance and giving feedback to staff on the ICU. Generally speaking, patients afforded value to the ICU follow-up clinic and felt that having the service available had helped with the physical and psychological elements of their on-going recovery,
however there were a number of patients who chose not attend as they had not wanted to return to ICU as they did not want to be reminded of the difficulties experienced therein.