The aim of this study was to explore the lived experience of the symptoms, health, and illness reported by patients recovering after pancreaticoduodenectomy ad modum Whipple due to pancreatic or periampullary cancer. Thirteen patients with pancreatic or periampullary cancer who underwent pancreaticoduodenectomy ad modum Whipple between 2006 and 2008 were interviewed during postoperative recovery. Data were analysed using the phenomenological-hermeneutic method. The structural analysis of patient experiences revealed that recovery after pancreaticoduodenectomy was described as recapturing everyday life, being healthy, and looking to the future. Participants experienced symptoms but did not dwell on them, instead they stated that their general health was good. They strived to regain their former precancer selves and be a part of as well as contribute to the social context. Overall, the participants’ view of the future was positive, and improvement in their health generated further confidence and encouragement. This study suggests that persons recovering from pancreaticoduodenectomy ad modum Whipple due to a pancreatic or periampullary tumour experience health despite postoperative symptoms. They manage their symptoms by means of different strategies and express a positive view of the future. Nurses working with such patients should adopt a person-centred approach focusing on patient perspectives, participation, and possibilities.
This paper reports an inside perspective of persons who underwent pancreatic cancer surgery. It adds new knowledge about the needs and preferences of this group of surgical patients and the nursing interventions required to promote postoperative recovery and health.
Pancreatic cancer is a relatively rare type of gastric cancer with high mortality. In 2008, there were 144,859 cases of pancreatic cancer in the world [
About 90% of all pancreatic tumours originate in the exocrine part of the pancreas and are usually localised to the pancreatic head (caput). These tumours generally manifest earlier than those in distal parts of the gland due to jaundice related to obstruction of the bile duct. Periampullary cancer includes tumours in ampulla vateri, distal bile duct, and duodenum. These are not clinically separate from pancreatic tumours but have a better prognosis [
Common surgical procedures for pancreatic cancer are pylorus preserving pancreaticoduodenectomy or pancreaticoduodenectomy (classic Whipple). There are no differences in mortality, morbidity, or long-term survival between pylorus preserving pancreaticoduodenectomy and classic Whipple in the treatment of pancreatic and periampullary cancer [
Several studies have reported four main symptoms of pancreatic cancer that are still present during recovery after pancreatic surgery [
Fitzsimmons et al. [
In conclusion, previous research has been conducted with an outside perspective, based on the assumption that all patients treated by means of upper gastric surgery have a homogeneous experience of recovery. This paper builds on the view that every person is unique and that various forms of upper gastric cancer are experienced differently. Thus, there is a need for an inside perspective from persons who underwent surgery for pancreatic cancer. The aim of the present study was to explore the lived experience of the symptoms, health, and illness reported by patients recovering after pancreaticoduodenectomy ad modum Whipple due to pancreatic and periampullary cancers.
An inductive and exploratory study was conducted over a two-year period at the Sahlgrenska University hospital in Gothenburg.
Patients were identified through clinical records by the first author. Seventeen potential participants who had undergone pancreaticoduodenectomy ad modum Whipple between 2006 and 2008 were contacted. Inclusion criteria were having undergone pancreaticoduodenectomy ad modum Whipple for a pancreatic or periampullary tumour, no experience of other major surgery or reoperation, no mental disorder, no alcohol or drug abuse, time since discharge not less than 30 days.
Written information about the study including an invitation to participate was sent to the seventeen patients. A week later, the author contacted them by phone, provided verbal information about the study, and asked if they would like to take part. Thirteen patients, nine women, and four men, with a mean age of 66.5 years (54–76 years), agreed to participate and were interviewed on one occasion. Four patients declined participation. Demographic details are presented in Table
Demographic data (
Age (mean, range) | 66, 54–76 |
Sex (male/female) | 4/9 |
Civil status (married/single/widower) | 10/2/1 |
Employment status (full time/part time/retired/sick leave) | 0/3/8/2 |
Months since discharge (mean, range) | 6, 1–15 |
Tumour site (pancreas, duodenum, ampulla vateri) | 9, 3, 1 |
Prior to the interviews, which were conducted by the first author, the participants gave their written consent. They were allowed to choose the location of the interview, six of which took place at the surgical unit and seven in the informants’ own homes. Each interview lasted between 20 and 60 minutes and was audio taped and transcribed verbatim. The interviews began with an open question “
A phenomenological-hermeneutic method inspired by Ricoeur [
In the first step,
In the second step,
In the final phase,
According to Swedish law at the time this study was conducted, ethical approval was only required for research involving the risk of physical encroachment or aimed to affect the participants physically or psychologically and, therefore, not possible to obtain for this study [
The naive understanding of the text revealed that, postoperatively, the informants had a strong will to recapture everyday life and were aware that they had to undergo a process of recovery. In the thematic structural analysis, the informants’ experiences of recovery emerged as
Thematic structural analysis of the patients’ experiences of being in recovery after pancreaticoduodenectomy ad modum Whipple (
Subtheme | Main theme |
---|---|
Living with and managing symptoms | |
Mastering self-care | |
Planning daily life | Recapturing everyday life |
Receiving support from health care staff | |
Being part of a social context | |
| |
Feeling well as opposed to ill | |
Being active and independent | Being healthy |
Feeling needed and included | |
Returning to an active life | |
| |
Pondering about the future | |
Thinking positively | Looking to the future |
Being in a state of uncertainty |
After discharge from hospital, the informants were forced to confront everyday life on their own for the first time since surgery, without health care staff support. Postoperative symptom experiences at that time were lack of appetite, altered sense of taste, decreased physical functioning, and loose faeces.
Food and drink were associated with negative experiences due to symptoms such as altered taste. Eating was no longer something positive or pleasant and merely considered necessary for the recovery process.
Due to difficulties with food intake, weight did not stabilise for a while. Bodily changes led to various emotional problems, for example, the experience that clothes did not fit or loathing themselves and their body.
The decrease in physical functioning was experienced as difficult to master and demanded a great deal of adaptation. The physical limitations made the informants more dependent on other people.
Initially, the symptoms had quite a significant impact on everyday life, leading to isolation or having to adapt to negative changes in bodily functioning. However, the informants mastered these experiences by using self-care and controlled the symptoms pharmacologically, for example, by means of analgesics and enzyme substitutes. Gradually, the symptoms abated.
Recapturing everyday life involved planning in order to adapt to the new situation. This included planning meals and, in some cases, finding out the location of the nearest toilet. The unavoidable planning and daily changed routine were experienced as limiting. Before discharge, health care staff continuously provided the informants with attention and care, often creating a close relationship between them, which ceased after discharge. This was a shock for some informants, as they no longer had someone to rely on or with whom they could discuss their self-care experiences.
The informants underlined the importance of support from health care staff after discharge. It gave them an opportunity to discuss symptom management and self-care needs.
Informants with enjoyable hobbies or who were still working were eager to regain their strength and impatient to return to their former lives. A gradual increase in the level of activity as well as social support helped many informants through this difficult transition, ensuring that they kept going in the right direction.
Difficulties were experienced by those with no close relatives or other support person. All the informants described the value of social support in the recovery process, not just with practical matters, but also in terms of encouragement.
The informants described themselves as healthy. The most important aspect of health was the ability to play an active part in everyday life and feel that they contributed both socially and professionally at work.
Being healthy did not necessarily mean the absence of symptoms. In cases where the informants experienced very debilitating symptoms, they often coped by using successful symptom management.
The importance of being needed at work and in their social network was emphasized. The initial experience of social isolation due to their symptoms made the informants angry, and they felt frustrated that readjustment took time. They never described themselves as sick, but instead stated that they experienced good health in view of their condition,which was associated with being independent.
All informants reflected on their future to some extent, but their perceptions varied. Some had a cautious short-term perspective and made the most of each day. Their strategy was not to dwell on the disease or a future relapse. They coped by adopting a positive way of thinking, focusing on good aspects of their present life and accepting the fact that the cancer might return.
Older informants argued that having reached a considerable age, there was no point in speculating about life expectancy. However, all informants brooded and expressed uncertainty about the future. Sometimes, these uncertainties were related to information provided by health care staff or obtained by the informant herself/himself. Symptoms that reappeared gave rise to negative thoughts about the future and sometimes to frustration or anger. A contributory factor was a perception that health care staff had not provided straightforward and honest information. Sometimes informants searched for information about their condition, but had difficulty in understanding the content. When the informants were worried about the future, they frequently sought support, consolation, and motivation from their family members.
Overall, the informants’ view of the future was positive; they looked to the future with confidence, yet were aware of the risk of relapse. Improved health and recovery gradually contributed to a positive feeling and inspired them further in the healing process.
The main finding in this paper was that, despite experiencing several symptoms that affected everyday life, the informants perceived themselves as healthy. Hence, they managed the symptoms in order to regain their former selves and social lives.
The participants in the present study reported experiences similar to patients recovering from breast, prostate, myeloma, colorectal, and other forms of cancer [
Being healthy was described as being autonomous and part of a social context. Based on the analysis of the results, the experience of being in recovery after surgery for pancreatic or periampullary cancer was interpreted as recapturing everyday life, being healthy, and looking to the future. The informants appeared to be motivated and were proactive in self-care. The present self was characterised by recovery from various physical symptoms. The ideal self was described as their precancer self, which included being able to work and participate in family life as well as social activities. The main objective of their actions was interpreted as regaining their former status in the social context and returning to their former selves, which involved being independent of caregivers and relatives.
The informants’ desire for a quick recovery was a motivating factor. Obstacles that delayed the process could be the uncertainty of the cancer prognosis and the unpredictable future. The symptoms also constituted obstacles on the path to recovery and were mastered in different ways depending on severity and level of distress. Recovery after Whipple surgery for pancreatic or periampullary cancer meant being active and autonomous as well as needed in everyday life.
This type of surgery has a long-term influence on a person’s general state of health and can cause many postoperative symptoms that affect the recovery process. Lawler [
According to Allvin et al. [
The informants’ overall goal was to enjoy good health and be part of the social context. Their actions aimed at minimizing the gap between their initial condition before surgery and their actual condition during recovery. On the question of the meaning of health to the individual, the informants’ response was regaining their former selves, that is, the way they were before the cancer, which they considered their ideal self. Being independent was another aspect of health. Despite the fact that the participants were in various phases of recovery, they assessed their health as good in view of the circumstances. The development of a new life plan includes self-assessment, self-determination, and self-realisation [
The informants reflected on the cause, importance, and effects of the symptoms in their everyday lives and how they could be managed. During recovery, they consciously strived to improve their condition and master setbacks in order to continue the process. Other authors have described the physiological, emotional, social, and behavioural aspects of mastering [
The informants’ internal environment consisted of various types of emotion. Positive emotions such as hope and security sustained them through the recovery period, while self-evaluating emotions such as shame and guilt limited their repertoire of actions. For example, the informants expressed feelings of discomfort and shame about their own body as a result of bodily changes caused by weight loss.
When the social context was unable to offer adequate support, health care staff had to provide confirmation. However, some informants did not obtain such confirmation, which made them feel abandoned. This was reported by Forsberg et al. [
The participants in the present study experienced similar symptoms to patients treated for abdominal or thoracic cancer. In addition, decreased physical functioning, symptoms related to eating and the eating experience, defecation problems, for example, diarrhoea and pain reported by our informants were similar to the experiences of patients treated for oesophagus, ventricle, breast, colon, lung, and prostate cancer [
One unexpected and interesting finding was that the informants rarely dwelled on the reason for their present condition or on their prognosis. Nor did they reflect to any great extent on how they felt emotionally due to the fact that they had survived and were not dead or dying. The informants managed to cope with distressing symptoms, thoughts, and events. The ability to use coping strategies and be free of distressing symptoms fosters hope [
It is also important to reflect on the concept of denial. This is a common reaction among persons diagnosed with cancer and has been described by Vos et al. [
An important question is what contribution nurses can make to patients’ recovery process after discharge from hospital. We believe that it is possible for surgical nurses to support the patients’ recovery even after discharge. Regular telephone followup could be of value in the recovery process, as it would allow the suffering caused by symptoms as well as setbacks to be addressed and might strengthen the patients’ inner sense of security. The provision of adequate information adapted to the individual’s needs, and ability to understand is of the utmost importance for postoperative recovery [
A characteristic of the patients in the present study was their strong will to live and their motivation to regain good health. Caregivers need to be responsive in order not to overlook the hope and driving force in each person. Our results demonstrate the importance of discussing the extent to which the patient has been successful in his/her recovery plan following discharge. The main focus of a telephone followup after discharge should be identifying recovery markers, supporting independence, and alleviating any suffering caused by impaired emotional well being or temporary setbacks. A recommendation is collaboration between different categories of health care professionals to address the problems experienced by patients after pancreaticoduodenectomy ad modum Whipple and to prepare a care plan. The findings highlight the importance of confirming and focusing on patients’ resources and efforts to achieve good health during recovery.
The interpreted whole comprises the thematic analysis of the entire text, with focus on the meaning of patients’ lived experience of recovery after pancreaticoduodenectomy ad modum Whipple due to a pancreatic or periampullary tumour.
The informants represented a homogeneous group in terms of treatment but a heterogeneous group with regard to age, gender, and follow-up time. One limitation was that they were recruited from the same hospital, thus the findings reflect only one medical and nursing tradition. It is possible that the result could have been different had patients from other hospitals been included. However, the present trend is that this type of surgery is carried out in highly specialized centres. Our aim was not to evaluate the treatment but the experienced meaning of being in recovery from pancreaticoduodenectomy ad modum Whipple. It is important to consider the possibility that only patients who felt well agreed to participate while those who did not declined, which could have an impact on the result.
Trustworthiness is important in qualitative studies, which implies that the research process, as well as the final interpretation, must be transparent. Trustworthiness comprises credibility, transferability, dependability, and conformability [
Informants included in this study were all treated by means of surgery between 2006 and 2008. However, as the surgical procedure and nursing care for these patients are still the same today, the results are applicable to the current care of this patient group.
Our study indicates that patients recovering from pancreaticoduodenectomy ad modum Whipple due to a pancreatic or periampullary tumour experience health and express a positive view of the future, despite postoperative symptoms, which they manage by different strategies. This health process is driven by a will to belong to and be part of a social context. These patients use goal-oriented actions to recapture everyday life, be healthy, and look to the future. Nurses working with such patients should adopt a person-centred approach focusing on their perspectives, participation, and possibilities. The results presented in this paper demonstrate that despite being burdened by postoperative symptoms, the patients can experience health and look to the future.
This study was supported by grants from the R&D council of Gothenburg and the south of Bohuslän, Sweden, and Kamratförbundet Sahlgrensringen in Gothenburg, Sweden.