Exploring the experience of an enhanced recovery programme for gynaecological cancer patients: a qualitative study

Participants recruited for the study had taken part in the ERP between October 2010 and April 2011 and had undergone elective open surgery for gynaecological cancer. The clinical team identified qualifying patients through hospital records and contact details supplied by the ERP project lead. In total, 34 patients were identified with 33 of these being asked to take part in the study. The 34th patient had returned home to a country outside of the UK and her contact details were not available.

Patients were sent an information sheet, an invitation to participate and a reply slip on which they could indicate whether they were consenting to take part in the evaluation. Those who agreed to take part could choose a face-to-face or a telephone interview. In total, 25 women responded to the invitation; 11 of the respondents opted not to take part in the evaluation. Of the 14 who agreed, four patients chose to be interviewed by telephone and 10 chose face-to-face interviews.

All patients taking part in the evaluation had undergone a full open hysterectomy, +/- bilateral salpingo-oopherectomy, +/- omentectomy, +/- pelvic lymph node dissection at an East Midlands regional cancer centre. Patients were all living in the East Midlands at the time of the operation and spoke fluent English; the sample comprised of women from various ethnic origins. The age range of the patients was 53 to 80 years (mean age, 66 years).

A semi-structured interview method was utilised, allowing for all participants to be asked similar questions within a flexible framework [15, 16]. All interviews were conducted in a place suitable for the women (which was chosen by them) and were recorded on a digital voice recorder. Participants dictated the flow of the interview, covering topics in an order with which they felt most comfortable. Questions focused on the women’s experiences of participating in the ERP as well as any other aspects of their hospital care they felt to be important. If further clarification or exploration of a topic was required, the researcher ‘revisited’ these topics before the close of the interview.

The study conformed to British Psychological Society ethical standards [17]; the protocol was approved by the University of Derby Psychology Ethics Committee and was approved as a current audit by the NHS hospital audit team at the Royal Derby Hospital. Participants gave written informed consent, and pseudonyms were used to protect their anonymity. Patients were also debriefed after their participation in the study and directed to suitable support agencies where necessary.

The choice of a qualitative methodology for this study was informed by researchers such as Starks & Brown Trinidad [18], who state that ‘qualitative research methods enable health sciences researchers to delve into questions of meaning, examine institutional and social practices and processes, identify barriers and facilitators to change and discover the reasons for the success or failure of interventions’. Analysis was conducted using an interpretative phenomenological analysis (IPA) approach, a methodology frequently used in health services research [15, 19‐22]. IPA was developed to ‘explore the participant’s view of the world’ and to adopt, as far as possible, an ‘insider perspective’ [23] and is informed by phenomenology and hermeneutics [24].

In line with the IPA methodology, interviews were transcribed verbatim, and initially coded by reading and re-reading the transcript and making notes, drawing on observations made during the interviews and transcription. Transcripts were then coded line by line: describing, summarising and attending to linguistic elements such as pronoun and metaphor use [15]. Emergent themes were developed from these codes and clustered with related themes.

Overall, the introductory information provided to these women about enhanced recovery was reported as informative both for them and for significant others. Patients described available information as increasing their knowledge; leading to a greater understanding of why they were being asked to comply with each part of the programme.

Existing health psychology literature recognises that seeking and using information (or not) can be indicative of, or linked to, coping style [25‐27]. Those patients who use a problem focused coping strategy are suggested to benefit from the ERP’s enhanced information as it helps them to understand their experience [28‐30]. This was reflected in this group’s reported experiences, which suggested that they were more likely to use problem focused than emotion focused coping strategies in dealing with their illness. Enabling patients to actively participate in their own care through being informed maintains a sense of autonomy which in turn prompts their motivation to adhere to a care programme [31].

Patients cited getting active as an important part of the programme, and receiving information and gaining knowledge enabled them to achieve this more quickly. It seemed that knowing what was expected of them and why helped them regain the control that is often reported as lost when undergoing surgery [32, 33]. For this group, being active was the key to going home; once this was achieved then their return home was assured. The route to being active, however, was not straightforward and a number of barriers were identified, such as getting out of bed:

In some ways the ERP, with its emphasis on getting up and active rather than resting and recuperating, contradicts the traditional post-surgery behaviour that this group of women would be more familiar with. A number of them had undergone gynaecological surgery in the past and most had had contact with someone else who had undergone a similar experience; being asked to get up almost immediately seemed, therefore, to be counterintuitive.

Although patients included in an ERP are told that they will be expected to get out of bed, this does not transfer into intention, and subsequently, behaviour. There are several reasons why patients do not want to get out of bed and mobilise, such as discomfort or pain or because they believe that they cannot, or even that they should not, be getting out of bed so soon.

The role of the physiotherapist is integral to getting patients out of bed; they successfully get patients out of bed and encourage them to be mobile [34, 35]. Postoperatively, in particular, the visit from the physiotherapist forms a key part of the start of the mobility aspect of the programme. By giving the patient permission to mobilise, the physiotherapist can build confidence that no harm will result.

Once they are out of bed, patients report that being mobile is not as difficult as they expected. This enables them to move towards completing ‘everyday’ tasks such as getting dressed, brushing their teeth and bathing. This return to ‘normal activities’ is important post-surgery; it helps patients take some control of their own care and builds confidence. The women in the current study reported a belief that these are the first steps on the road to being able to return home and their rapid resumption of physical activity suggests a much less stressful post-surgery experience than might usually be the case.

Prior to surgery, the receipt of information about the coming days is particularly important for patients and their significant others. It allows them to understand why they are being asked to comply with the programme and helps set their expectations about what is required from them after surgery. This information moderates the relationship between instruction and intuition, which is an ongoing battle for patients taking part in ERPs. Patients find that initiating physical movement (getting out of bed) most difficult; physiotherapists have an important role to play in patients’ mobility as they, in part, give patients both permission and confidence to mobile within a structured environment.

Patients who see a physiotherapist at the preoperative appointment are shown how to get off the bed, and are given information to support this. This process was highlighted in the patients’ accounts of their experience as being important for them, so is something that should be encouraged, particularly as it may improve patients’ self-efficacy in getting out of bed and starting to mobilise [41‐43]. It is known that self-efficacy represents a personal resource factor that may facilitate coping both during and after surgery [44]. Bandura described that one of the ways to improve self-efficacy is though vicarious experience (watching someone else who is comparable with the patient) [43]. In light of this, it may be worthwhile having a resource available for patients to watch or use that shows patients how to correctly get out of bed (modelled by an appropriate actor), in something as simple as a video that could be distributed on CD, online or shown in clinic [45].

ERPs allow patients to go home sooner, and for many this is the place that they desire to be (albeit when they are confident to return home). However, home is not as ‘easy’ as before the operation. Early discharge with reduced mobility alters the role of home and the interaction that patients have with this place. Additionally, early discharge challenges the roles of those who are associated with home (primarily spouses or other close family members). Information about what patients should and should not do after their operation is detailed in the literature given to them at the preoperative stage and is followed by confirmation on discharge. As long ago as 1999, however, researchers found that physicians overestimate patients’ understandings of the post-discharge treatment plan, and suggested that steps should be taken to improve communication about post-discharge treatment [46]. More recently, research has found that husbands who were asked to watch videotaped information designed to assist patients in their recovery after surgery were more successful in helping their wives achieve this, thus suggesting that information specifically written for significant others may be of benefit [47].

The implementation of follow-up phone calls assists with the transition from the hospital to the home environment. The analysis highlights that patients are unlikely to contact the hospital themselves. Therefore, the follow-up phone calls must happen in order to prevent unnecessary readmission and use of primary care resources. An intervention that would encourage patients to call the ward when necessary would be beneficial. This may include some sort of prompt sheet in the discharge material that details the type of problems to look out for (that is, with wounds or bowel movements). This would be beneficial for both patients and significant others as it would raise awareness of some of the issues that are associated with this type of surgery and which ones are problematic and require hospital intervention. In addition to this, it may be beneficial for those completing the discharge to emphasise the availability of contact with the ward to the significant other who is staying with the patient on their return home. The significant other often becomes the main carer and is on occasion faced with the decision about whether to seek medical assistance [11]. The availability of communication with a healthcare professional on the ward may well reduce some of the worry or stress associated with caring for a patient at home who is on day two of recovery from surgery.

This is the first study looking at the experiences of taking part in an ERP for women undergoing surgery for gynaecological cancer. The analysis of the interview data gives a previously unseen view of ERPs from the patient experience and has highlighted a number of areas for consideration when designing perioperative care for gynaecological cancer patients. However, there are a number of limitations. Patients included in the analysis were recruited from a larger sample of women. All patients on the ERP within a given time frame were asked to take part, and out of 33 patients, only 14 chose to participate. This self-selecting sample may have been the patients who have ‘something to say’ about the programme and chose this evaluation as an avenue for discussion. Further to this, the interviews were conducted after a considerable period of time for some patients (up to 8 months after the operation). For future research it may be beneficial to interview patients closer to the time of surgery. However, for this study it was difficult to interview participants who were still on active treatment, as they did not have time to participate, and in some cases, did not feel ready to explore their experiences of surgery.

This sample also consisted of older women. With a mean age of 66 years, there was little reflection of the breadth of ages of patients with gynaecological cancer. Younger patients were invited to take part but declined the offer. It would be interesting to compare the experience of younger patients (that is, those with cervical cancer) with that of the older generation to explore any impact of age on the perception of the programme and their expectations. In addition to this, all patients in this sample were returning to their own home rather than an alternative place of discharge such as a nursing home or a long-term hospital bed. Research suggests that patients who return to a destination other than home experience longer lengths of stay than those who return home [36]. As the current analysis had such a large focus on home and the role of home in enhanced recovery, additional research with a diverse patient group is required to effectively explore other possible experiences.