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Patients’ Experience and Needs During Perioperative Care: A Focus Group Study

Authors Gobbo M , Saldaña R, Rodríguez M, Jiménez J, García-Vega MI, de Pedro JM, Cea-Calvo L

Received 5 March 2020

Accepted for publication 1 May 2020

Published 27 May 2020 Volume 2020:14 Pages 891—902

DOI https://doi.org/10.2147/PPA.S252670

Checked for plagiarism Yes

Review by Single anonymous peer review

Peer reviewer comments 2

Editor who approved publication: Dr Johnny Chen



Milena Gobbo,1 Roberto Saldaña,2 Marcos Rodríguez,3 Javier Jiménez,4 María I García-Vega,5 José M de Pedro,6 Luis Cea-Calvo6

1Positivamente Psychology Center, Madrid, Spain; 2Confederation of Patients with Crohn’s Disease and Ulcerative Colitis, Madrid, Spain; 3General Surgery Department, University Hospital Gregorio Marañón, Madrid, Spain; 4Anesthesiology Department, University Hospital of Getafe, Madrid, Spain; 5Anesthesiology Department, Jiménez Díaz Hospital Foundation, Madrid, Spain; 6Medical Affairs Department, Merck Sharp & Dohme Spain, Madrid, Spain

Correspondence: Milena Gobbo
Positivamente Psychology Center, Av. del Pdte. Carmona, 10 BIS, 1º A, Madrid 28020, Spain
Email [email protected]

Purpose: Information regarding patients’ needs, fears and experiences/perceptions in the perioperative setting is limited. Through two focus groups, we explored the needs, fears and experiences of patients who had recently undergone, or were scheduled for, surgery under general anaesthesia, with regard to the entire perioperative process.
Materials and Methods: Adults were invited to participate in a focus group if they had (a) undergone abdominal or gynaecological surgery with general anaesthesia in the past 4 months (focus group 1) or (b) been indicated for abdominal or gynaecological surgery and were waiting for the assigned surgery date (focus group 2). Discussions were audio recorded and, through thematic analysis, patients’ needs and experiences/perceptions regarding perioperative surgical stages were obtained/coded. Analysis of code co-occurrence was performed using a codes matrix.
Results: Focus groups consisted of 13 females, 1 male (50% aged > 45 years). The immediate postoperative period generated the highest number of co-occurrences, followed by the indication of surgery. The most frequent code was the need for information, especially at the indication of surgery, the pre-anaesthesia clinic and in the postoperative period. Fears were described particularly at the indication of surgery, the waiting period, the surgical room, anaesthesia induction and the postoperative period, particularly after hospital discharge; pain was cited most commonly in the postoperative period. Stress/anxiety and emotional impact were also cited in the postoperative period including home arrival.
Conclusion: Information collected in these patients’ focus groups should inform future research and healthcare planning. Patients demand receiving more comprehensive and understandable information and more involvement in several steps; this could reduce fears and stress/anxiety described across the perioperative process. Importantly, findings also extend to the postoperative period and home arrival.

Keywords: anaesthesia, experience, focus group, patients, perioperative care, surgery

Introduction

A fundamental priority for health-care systems worldwide is to improve the health of the population and, in this regard, they are responsible for the distribution of health in the population (health equity) and they should be responsive to the needs of the population and deliver services efficiently.1 The worldwide growth in the prevalence of chronic diseases2 places an enormous clinical and financial burden on health-care systems and it has been suggested that this requires the transformation of current acute-oriented health-care systems into more flexible systems able to deliver effective and high-quality chronic care and also preventive measures to patients and healthy populations.3 This transformation will require a “top down – bottom up” approach involving shared decision-making with well-informed patients at the centre of the care process.3 In this regard, Wagner et al developed a Chronic Care Model and proposed systematic transformation of health-care systems to provide proactive, integrated and patient-centred clinical assistance.4 This model has become a reference for quality-of-care for patients requiring chronic treatment, and pivotal to the success of this model is the interaction between well-informed active patients, and well-prepared proactive and coordinated health-care providers.

Together with clinical effectiveness and safety indicators, evaluation of patient experiences with the healthcare system can contribute to the overall care process through the development and assessment of quality indicators to identity areas for improvement. In a systematic review, Doyle et al described a positive association between patients’ experiences with clinical effectiveness and safety in a wide range of diseases and care settings, and with adherence to prescribed medicines and to preventive care.5

While research into the needs and experiences of patients in the chronic disease setting has expanded in recent years, information on the experiences of surgical patients with perioperative care is limited.6 A systematic review of five relevant studies highlighted several factors which can affect patients’ subjective experiences and satisfaction during the perioperative period, including the importance of pre-admission contact; provision of relevant, specific education and information; the need for improved communication skills; continuity of care after surgery by the same nurse whenever possible; and maintenance of patient privacy.7

The indication of surgery is a critical moment in a person’s life and can trigger different needs, feelings or fears. A positive patient experience may be important for obtaining favourable outcomes although results to date have been variable. Interestingly, Kennedy et al reported a significant relationship between high overall patient satisfaction and low mortality.8 A better understanding of patients’ feelings, beliefs or fears may help health-care providers to plan and optimize the management of individuals during the perioperative period. In addition, recording the experiences of patients that have previously undergone a surgical procedure may also help identify areas of the perioperative care process that can be improved.

Thus, the aim of the current exploratory focus group study was to obtain information pertaining to perioperative care from two groups: firstly, in patients who had previously undergone surgery, their experience over the entire perioperative period, with specific emphasis on several predefined relevant moments or situations was monitored; and secondly, the feelings, beliefs and fears/expectations of patients due to undergo a surgical procedure (but still waiting for a surgery date) was also surveyed. The information provided by these focus groups will be of the utmost importance to plan future research and to implement actions aimed to improve the patient’s experience with perioperative care.

Materials and Methods

We conducted a qualitative exploratory study with two focus groups of patients: (1) patients with a history of recent abdominal or gynaecological surgery and (2) patients who had recently been indicated for abdominal or gynaecological surgery.

Patients were invited to participate by two gastroenterologists, one abdominal surgeon, one gynaecologist, one anaesthesiologist, and from the Spanish Confederation of Patients with Inflammatory Bowel Disease (ACCU). Invited participants had to be adults (aged >18 years) who had (a) undergone abdominal or gynaecological surgery with general anaesthesia in the past 4 months (focus group 1) or (b) been indicated for abdominal or gynaecological surgery and were waiting for the assigned surgery date (or contacted if the surgery date had not been set; focus group 2). Patients who, in the opinion of the investigator, were not adequate participants for focus groups (cognitive impairment, major depression or other serious conditions [eg, end-stage disease], or with physical limitations), were not invited to participate. Theoretical sampling or structural sampling was performed to recruit patients with different demographic characteristics and background diseases, with the aim of including men and women, patients of different age ranges, with digestive or gynaecological surgery, affiliated or not to patients’ associations and with open laparoscopic surgery.

The study was approved by the appropriate Clinical Research Ethics Committee. All patients provided signed informed consent to participate in the focus groups and for audio recording.

The focus groups were conducted on consecutive days in a quiet, comfortable room, by a focus group moderator and an assistant. A discussion map (mainly depicting the different steps of the perioperative process from the patient perspective) was provided to patients to guide the discussion. Discussions were audio recorded, and subsequently transcribed verbatim. Nonverbal behaviour was monitored by the assistant moderator (who did not take part in the discussion) by taking field notes that were later incorporated into the transcript. A thematic analysis of the discourse content was performed using ATLAS.ti® software (version 8.4) to identify quotations and assign codes. The common themes and concepts that supported each of the categories were identified in two steps: (1) deductive analysis was used to assign codes previously identified about the perioperative process; (2) inductive analysis was performed to identify emergent codes relevant to the study goals. A list of the needs and experiences/perceptions of the patients with respect to each of the defined surgical stages was obtained, as well as other aspects that, in the opinion of the patients, were important for them and should be considered for planning the whole perioperative care period in the most satisfactory way possible.

Analysis of codes co-occurrence tables was performed using a codes matrix in which the figures reflect the number of times an inductive code (needs or experiences/perceptions) was associated with a deductive code (specific moments of the perioperative process) during patients’ discourse (co-occurrence). This association of co-occurrence identified important concepts that might be associated with each other and could play a key role in comprehending the perioperative process.

Because all patients in the focus groups had a history of surgery (all patients waiting for surgery had a surgical experience in the past) and the discourses did not yield meaningful differences, consolidated outcomes are presented.

Results

Description of the Sample

The sample of patients who accepted the invitation to participate in the focus groups consisted of 13 females and 1 male. Seven patients were aged <45 years, six were aged ≥45 years and one was aged >65 years. All patients had a history of past surgery with general anaesthesia and, with the exception of one patient, were from third-level hospitals (large hospitals with all specialties and facilities) in Spain. Table 1 summarises the participants’ characteristics.

Table 1 Main Characteristics of Participants in the Focus Groups

Codes and Co-Occurrences of Different Codes

Table 2 shows the overarching themes and different codes identified (different moments of the perioperative process, patients’ needs and experiences). By thematic analysis, 14 codes were assigned to the different moments of the perioperative process. Thirteen further emerging codes were identified representing patients’ needs (concrete requests with regard to the different steps of the process, 7 codes) and experiences or perceptions (6 codes).

Table 2 Codes Assigned

The different co-occurrences of codes are displayed in Table 3, identifying the codes that were discussed most frequently by patients. The immediate postoperative period was the moment of the process that generated the highest number of co-occurrences, followed by the indication of surgery. The code that appeared most frequently was the need for information, especially at the indication of surgery, the pre-anaesthesia clinic and in the postoperative period, including after home arrival. Material resources, companions (a relative or close friend) and some personalisation were cited as needs in the postoperative period. The need for a “health-care professional of reference” (one well-identified physician who knows the patient’s clinical history and current status) was cited across different steps of the process. Among the perceptions and experiences, fear was cited especially at the indication of surgery, the waiting period, the surgical room, anaesthesia induction and the postoperative period, particularly after hospital discharge, whilst pain was cited most commonly in the postoperative period. Stress/anxiety, emotional impact and pain were cited after home arrival.

Table 3 Co-Occurrence of Codes Which Emerged from the Patient Focus Groups: Needs and Experiences/Perceptions

Relevant Topics: Needs (Table 4)

Information

In general, patients complained about the complexity of the written information provided (information on the surgery or anaesthesia and informed consent) and missed more oral discussion with their physicians in an understandable language. They also discussed that information received should not be limited to the medical problem and the surgery itself as the solution, but also to possible alternative treatments and the potential consequences or subsequent limitations after surgery, including an approach to the length of sick leave considering patients’ professional activities. In this regard, several patients complained that their limitations after what was considered a successful surgery by their physicians had been much more severe than explained, if they were explained at all. Patients agreed that health-care professionals frequently assume that patients know obvious things that they are not really informed about. Finally, they agreed on the need to nominate a relative as a “person of reference” to receive information from health-care professionals, to avoid misunderstandings or missing information.

Table 4 Codes Which Emerged from the Patient Focus Groups: Needs

Relatives or Companion

Having a close relative or companion was highlighted by patients, particularly at several steps of the perioperative process in which they are missed. The two moments where patients missed the company of relatives the most were the transfer to the surgical area (specifically, the waiting period in the ward before patients finally enter the surgical room), and the immediate postoperative period, when the patient awakens from anaesthesia. Patients agreed that the waiting period in the ward before entering the surgical room was one of the situations that generated more anxiety, because many times they were left alone with no company or health-care professionals and the waiting seemed endless. They also highlighted the importance of company after discharge, and the inconvenience of an excess of visitors in the hospital room after surgery.

Other Needs

Other needs that arose from the discourse were the need for some degree of personalization – understanding the importance of protocols, but considering some patients’ situations or preferences, and the need to have a “health-care professional of reference” across the entire perioperative process. Patients with inflammatory bowel disease (IBD) treated in specialized IBD units acknowledged how important it was for them having had their usual gastroenterologist always involved in the overall process. Lack of coordination between health-care professionals was raised as an issue by several patients, sometimes leading to duplication of visits or lab tests, especially during the preoperative period. Finally, patients highlighted the importance of having access to different specialists (eg, psychologist, physiotherapist, nutritionist) during the entire period, but mainly after surgery, and of adapting several “material resources” like hospital clothes or devices (eg, oxygen masks) to patients’ size, or room temperature to a patient’s status and preferences.

Relevant Topics: Experiences or Perceptions (Table 5)

Fears

Most relevant fears of patients were concentrated in three moments: the waiting period, surgery itself (anaesthesia and surgery) and hospital discharge, including home arrival. The “waiting period” between the indication of surgery and the assigned surgery date triggered fear and anxiety/stress for the possibility that the underlying condition may worsen or even need emergency surgery. This feeling was more pronounced when a date for the surgery had not yet been assigned. Patients missed closer follow-up of their condition during this waiting period.

Table 5 Codes Which Emerged from the Patient Focus Groups: Experiences/Perceptions

With regard to anaesthesia, the main fears described by patients were fear of not waking up, fear of waking up during surgery and fear of waking up after surgery with a lack of control or inappropriate behaviour. Several patients highlighted that their fear of anaesthesia (especially of not waking up) was even higher than their fear of the surgery itself. With regard to surgery, patients agreed that the surgery room environment itself generates fear and was described as “intimidating”, and they feared the appearance of complications during surgery (including death).

The main fears described during the immediate postoperative period related to a lack of understanding of what is normal or not after surgery, especially pain or discomfort and, after hospital discharge, related to having to cope with a new situation, generally with limitations in everyday life when patients arrive home. Some patients complained that they perceived such limitations to be larger than they expected or were told by their clinical teams.

Emotional Impact

Patients agreed that surgical interventions trigger different emotions, many of them needing some solace or relief in different ways. Some patients felt the need for relief by crying or simply by being alone for some time. They acknowledged that, besides the surgery, the hospital environment itself generates feelings of sadness.

The postoperative period, especially when arriving home after hospital discharge, generates a strong emotional impact on patients for two reasons. Firstly, patients claimed that the “success of the surgery” does not always correlate with their feelings of “being well”. On the other hand, adapting to the new situation at home generates anxiety for the urgency to resume normal life and minimize any impact on patients’ relatives, particularly children. This is magnified when patients perceive that their limitations for everyday life are larger than expected. Patients missed more information on what to do/not do, or some recommendations for the convalescence period at home.

Pain

In general, patients perceived that pain is normal during the postoperative period (“it is part of the process”), but they claimed that sometimes the clinical teams are not flexible with analgesia. Patients considered that some flexibility with analgesics, including exceptional extra doses of potent drugs (when feasible), is important. They claimed to have experienced “unnecessary” pain due to the reluctance of physicians to use more potent analgesics. Having pain and needing to “wait for the next scheduled dose” was a frequent situation that generated unnecessary discomfort.

Stress and Anxiety

In general, stress and anxiety were linked to the above-mentioned patients’ fears, but were also described in situations with no “immediate threat”, the most important being the waiting period (due to uncertainty around the surgery date) and hospital discharge (due to the uncertainty of how to cope with everyday life and how long limitations would last).

Implication in Decisions

Some patients claimed that they wished to have been more informed and implicated in decisions taken by the clinical teams, at least regarding several aspects like the best moment to perform the surgery or the kind of anaesthesia when several options are available.

Privacy

Patients agreed that the lack of privacy in hospital is an issue. Whilst preferring individual rooms, patients acknowledge that this is rarely possible. However, they missed privacy when, for example, the clinical team inform a patient on the outcomes of surgery or on specific disease-related issues. Patients also complained that, although progress has been made in this regard, data privacy was not always guaranteed.

Discussion

In recent years, patient experiences, satisfaction and expectations have become increasingly important as outcome measures, and this is in line with the healthcare goal of improving the patient’s experience with clinical care.9 Key aims of perioperative medicine include the identification and optimal care of high-risk surgical patients, with a focus on patient-centred decision-making throughout the perioperative period. This should help limit unwarranted variations in practice, with consequent reductions in preventable complications, and improved patient satisfaction, long-term morbidity and survival.10 However, in general, there is a limited amount of information available regarding patients’ experiences across the different perioperative stages,6 and it is recognized that the traditional model of perioperative medicine requires improved coordination and organization.11 The current study assessed information provided during patient focus groups to ascertain the needs, fears and experiences of patients who had recently undergone, or were scheduled for, abdominal or gynaecological surgery under general anaesthesia, with regard to the entire perioperative process, and can be a basis for future quantitative research and healthcare planning.

The main topics highlighted by patients during the focus groups were reflected within specific moments during the perioperative process. The immediate postoperative period was the moment that generated the highest number of co-occurrences, followed by the indication of surgery, and the need for information was the code with the highest number of co-occurrences. Other key moments occurred at pre-anaesthesia, anaesthesia induction, surgical room and surgery, post-surgery prior to discharge and post-surgery at home. Specific fears with regard to surgery and anaesthesia were highlighted in patients’ discourse, as well as anxiety/emotional impact and pain after surgery. The first step in improving patients’ perioperative experience is recognition and awareness among the entire perioperative team of these specific moments, so that preventive measures can be implemented.

Previously, patients’ perceptions of quality-of-care during the perioperative period were investigated in a cross-sectional descriptive survey using the Quality from the Patient’s Perspective (QPP) questionnaire in 170 patients undergoing general (90) or orthopaedic (80) surgery in Sweden.12 Overall, patient perception of the quality-of-care was good with high levels of satisfaction for most QPP items. However, only about half the group were satisfied with their opportunity to participate in discussions relating to the operating room or post-anaesthesia care unit (PACU). The authors concluded that the participation and information needs in the postoperative setting seem to be personal and situation specific.12 These findings are in line with those from our patient focus groups which indicated that the main patient needs are for understandable information across the different steps of the perioperative process, particularly at the indication of surgery, pre-anaesthesia, as well as in the postoperative period. Moreover, our focus group findings highlight the importance of greater patient input and participation in decisions at several steps of the perioperative period, particularly at the indication of surgery and before hospital discharge, extending the findings from Forsberg et al12 beyond the operating room or PACU. It is worth noting that home arrival generated a high number of co-occurrences with important codes like information, stress/anxiety, emotional impact, pain and fears, suggesting that more attention must be placed on this part of the process by health-care professionals.

For patients undergoing surgery, there is a strong association between patient satisfaction and both “perceptions of good communication” and “transfer of information”. Confidence and trust in the clinical team is also an important determinant of the patient’s experience.13 Although patients who underwent surgery at a tertiary-care hospital in Spain generally rated their satisfaction with perioperative care as good, several areas of nursing care that could be improved were highlighted, including provision of better advice; keeping patients better informed; exhibiting more patience; and spending more time with patients.14 Increasing patients’ awareness of nursing interventions can also result in improved patients’ satisfaction with nursing care.15 A small exploratory study of patients who underwent abdominal surgery with a general anaesthetic revealed that patients felt they were not adequately informed of the procedure, were fearful of losing psychological and physical control, and lacked support from professionals to diminish their fears. Overall, they indicated that they would have liked to have known more about the surgical experience and what to expect.16 Interestingly, in this study, patients were more fearful of anaesthesia than of the actual surgical procedure and acknowledged the importance of the presence of nursing staff and family members as much as possible. Many of these factors were also discussed by patients in our focus groups, highlighting areas for improvement in the perioperative process.

The findings from our study also highlighted that the waiting period was one of the moments which was most associated with patient fear, triggering anxiety and stress. A recent qualitative study highlighted the complex relationship between greater symptom severity and less tolerance with wait times, challenging the commonly held belief that waiting for healthcare is always negative.17 In another study involving women undergoing outpatient surgery, participants described developing anxiety when walking to the operation room, which increased with prolonged preoperative waiting times.18 Breakdown or lack of communication during the preoperative period and preoperative waiting times were identified as major factors affecting patients’ experiences and satisfaction with care. Closer and more regular follow-up of patients by the perioperative team, particularly during waiting periods, should help to reduce anxiety and stress levels.

The above studies generally analysed the care process holistically over the entire perioperative period. However, similar to the moments (steps) identified in our study, Jones et al investigated patient-reported experiences by stages such as: admission, ward environment (including patient-staff interactions); pre-surgery, surgery, discharge and post-discharge.13 Some key factors which positively impacted overall patient satisfaction included: the need for privacy for clinical discussions and examinations; absence of night-time noise; high standards of cleanliness; confidence and trust in doctors and nurses; staff to provide emotional support; good communication skills, involving the patient and answering important questions; treated with dignity; involvement in discharge process with sufficient notice; discussions about home environment; discussions on potential warning signs post-discharge; provision of written information including contact information for any concerns; medication advice/instructions; and instructing the family about providing patient care.13 Interestingly, many of these factors which positively influence patient satisfaction also address concerns reported from the perioperative experience of patients undergoing hand and wrist surgery, based on patient journey maps.19 The entire patient experience was associated with insecurity, reassurance by staff, loneliness, and a lack of information. Prior to surgery, lack of control was the most prominent experience and, during surgery, acceptance and curiosity were present.19 Taken together with the findings from our qualitative focus groups, there are clearly areas of the perioperative process which can be improved to assist health-care providers in planning and optimising the management of individuals during the perioperative period.

The current study has some limitations. Only one male accepted participation in the focus groups and, although we did not detect specific differences with the needs and experiences of females, we cannot rule out different outcomes if more males had participated. All patients who were waiting for surgery had undergone surgery in the past, and thus the perceptions of “naïve to surgery” patients are not captured in this study. Surgical procedures were limited to abdominal or gynaecological. Consequently, the results do not cover the opinions of the overall population of individuals undergoing, or scheduled for, any surgery. In addition, with the exception of one patient, all patients came from third-level hospitals in the public Spanish Health System. These third-level hospitals have access to all the necessary specialists and facilities, and it is possible that the outcomes may have been different for patients coming from first- or second-level hospitals (smaller size, fewer specialties). However, the information obtained came from different patient profiles and pertained to the whole perioperative process, from the indication of surgery to home arrival, and is rich enough to serve as the basis for future quantitative research. Outcomes from this study provide valuable clues for simple actions that, regardless of the healthcare system, could improve patients’ experience and welfare.

Conclusion

In conclusion, given the current lack of information regarding patients’ needs, fears and perceptions across the different steps of the perioperative process, the outcomes of the focus groups reported herein should help to inform future research and healthcare planning. In general, patients demand receiving more comprehensive and understandable information across the whole perioperative process, more involvement in several steps and, when feasible, some degree of personalization. Setting appropriate expectations with regard to surgery outcomes was also mentioned as an important need: physicians’ and patients’ perceptions on “a positive outcome of surgery” seem to differ. Patients expressed several fears and stress/anxiety about surgery and anaesthesia that could be overcome with more targeted information and patients’ involvement. Finally, from these patients’ perspectives, pain management could be improved at the different steps. Importantly, findings also extend to the postoperative period and home arrival, an essential step in the process that seems to be poorly attended. On the basis of this research, quantitative studies will yield more information on patients’ needs and experiences with the entire perioperative process.

Ethics Approval

The study was approved by the Clinical Research Ethics Committee of the University Hospital of Getafe, Madrid, Spain.

Patient Consent

All patients provided signed informed consent to participate in the focus groups and for audio recording.

Acknowledgments

This study was endorsed by the Confederation of Patients with Crohn’s Disease and Ulcerative Colitis of Spain and by the Spanish SENSAR group (Safety Reporting System in Anesthesia and Resuscitation). Under the guidance of the authors, medical writing support was provided by David P. Figgitt PhD, ISMPP CMPP™ and Steve P. Clissold PhD, ISMPP CMPP™, Content Ed Net, with funding from Merck Sharp & Dohme Spain, a subsidiary of Merck & Co. Inc, Kenilworth, New Jersey, USA.

Author Contributions

All authors made substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; took part in drafting the article or revising it critically for important intellectual content; gave final approval of the version to be published; and agree to be accountable for all aspects of the work.

Disclosure

José M de Pedro and Luis Cea-Calvo are full-time employees of Merck Sharp & Dohme Spain. Milena Gobbo reports personal fees from MSD, during the conduct of the study; personal fees from Sanofi, Pfizer, Abbvie, Sandoz, outside the submitted work. Roberto Saldaña reports grants from MSD, during the conduct of the study; grants from MSD, Abbvie, Janssen, Pfizer, Roche, Dr. Falk, Ferring, and Takeda, outside the submitted work. María I García-Vega reports personal fees from MSD, during the conduct of the study. The rest of the authors report no other conflicts of interest in this work.

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