For all patients, regardless of diagnosis, treatment and outcomes, the impact of the changes and experiences that accompany the onset of illness can be frightening and challenging. Although treatment may address the original medical problems, the outcomes can include short-, medium- and long-term health issues. In addition, where major surgery such as stoma formation is needed, the physical changes can also be accompanied by psychological problems that are hard to resolve. Indeed, evidence suggests that more than 20% of stoma patients experience long-term significant psychological challenges and concerns that, unrecognised, can affect and impact not only the patient, but also their family, friends and work situation (Notter and Chalmers, 2012; Black 2018).
It is impossible to separate the psychological and physical self from who we are and what we do. Our daily activities of work, play, family and friends are perceived through our actions and interactions, with our bodies being integral elements in everything we do, including our relationships with others. Fundamentally implicated in all lived experiences, any action that impinges on or affects the mind and body affects individuals' lives. When medical help is sought and the diagnosis results in surgery, and individuals change their roles to become patients, they have to face the reality of the outcome of what may be radical and/or major surgery.
In becoming a stoma patient the diagnosis initiates a process in which the individual has to come to terms with the bodily changes that will happen and interpret the symptoms and try to understand the disease in their own body. Health professionals have to accept that, in the patient's early recovery stage, learning coping mechanisms and new skills to cope with a stoma is not easy. Patients can become overloaded as a result of issues of physical weakness and the effort involved in trying to recover. The situation is compounded by what is, for some, a perceived loss of independence, confidence and dignity (Black, 2004). Then too, the accompanying changes in body image can lead to patients ‘mourning’ for their lost body part, and for some, these psychological effects are recognised as being greater than the physical effects (Di Gesaro, 2016).
There is evidence that there is considerable reluctance from both the health professional and patient to discuss any of these problems even if the patient still has recourse to a specialist stoma care nurse (Notter and Chalmers, 2012; Vonk-Klaassen et al, 2016; Black, 2018). Clinical documentation and patient reports indicate that, for many patients, despite the long known need for improvements in support, the same concerns and challenges repeatedly arise, and that these problems are often not identified by health professionals (Department of Health (DH), 2007). It is evident from more than three decades of research that, regardless of medical advances and varying reasons for surgery, the challenges remain unchanged, as does the urgent need for reform and revision of the services (Black, 1992; Notter, 2002; Black, 2004; DH, 2007; Notter and Chalmers, 2012; Black, 2018). However, each patient's response is individual and, therefore, for changes in services and information offered to be successful, service providers need to recognise the different ways in which patients cope with disease and its resultant outcomes. Black's (2018) phenomenological study identified five different coping styles that stoma patients use. Information and guidance based on these could be developed to help support and empower patients to take control of their own lives to reach the best possible quality of life (QoL).
Background
More than two decades ago Bekkers et al's (1995) seminal study of patients' ability to cope with, and their expectations of life after, stoma surgery, included self-efficacy, task performance and adaptation. The researchers used the Psychological Adjustment to Illness Scale (PAIS-SR) at 4 and 12 months after surgery. Identifying the ability to self-care after surgery was influenced by sense of self and support. Patients with strong feelings of self-efficacy who received good support and developed strategies for adaptation had fewer post-surgical psychological problems and coped better with the physical changes. These findings were evident in later research (Black, 2018). Patients demonstrating poor psychological adaptation saw their lives much more negatively. Black's (2018) study found participants describing their ‘world had collapsed’ or that they had been ‘cast adrift’ (Black, 2018). Finlay (2011) reported that physical changes in mobility and motility had adversely affected stoma patients' sense of self and self-worth. For these patients, the physical pain accompanying what they saw as their body being ‘damaged by surgery’, led to them seeing their body as ‘alien—it's not me anymore’. This change in self-perception is not new (Svenaeus, 2001), and for patients to adapt to the changes and have the best possible quality of life, there needs to be professional support and guidance from diagnosis onwards.
Lack of recognition of the psychological impact and its potential adverse affect on lifestyle may in part be because, traditionally, patient outcome measures following bowel surgery have focused on specific medical complications, stoma problems, clinical health status and physical function (Vonk-Klaassen et al, 2016). This needs to change to assessing all aspects of need throughout the long trajectory of bowel surgery, stoma formation, recovery and the after-treatment phase. For a patient to have the best possible chance of positive life adjustment, psychological care needs to begin at diagnosis and continue throughout the lifespan.
Timely and appropriate information can help adjustment (and hence QoL), yet, the most frequently cited unmet needs are practical advice and short, medium and longer term information on coping strategies (Adams et al, 2009; Vonk-Klaassen et al, 2016). Information is available during treatment (from specialist nurses), but time after time, research indicates there is a strongly expressed need for information after cessation of therapeutic intervention (Black, 1992; Notter, 2002, DH, 2007; Notter and Chalmers, 2012; Black, 2018). The absence of long-term accessible guidance has resulted in patients having to seek information through comparison with others—they have often made their own contacts with other patients through personal and social media or, in some instances, patient support groups. Such social comparisons enable individuals to use external (to them) patient images to evaluate their own progress along the disease pathway. If these contacts are perceived to be progressing well in their disease trajectory, they are seen as offering an ‘upward comparison’, while those whose condition is worse are seen as giving a ‘downward comparison’ (Suls, 2012). Where a patient can compare themselves favourably with others, it appears to support positive adjustment to the diagnosis of disease, resultant surgery and long-term outcomes. Those who make an ‘upward comparison’ can then, in their own turn, help other patients struggling to adapt (Suls, 2012).
Within each society, changes in body image are perceived differently as each social group has their own perceptions of health and illness, with accompanying issues and taboos (Chelvanayagam, 2014). While the body in health is often taken for granted, in the presence of illness, it brings the realisation that it can no longer be relied on, but has ‘failed’, leaving the individual vulnerable to internal disharmony and conflict, unable to maintain the role they once unthinkingly held (Bekkers et al, 1996; Black, 2000; Helman, 2007; Black, 2017; Polidano et al, 2020). This change in body (and body image) accompanying stoma formation surgery can be compared with a social or cultural rite of passage. The individual crosses a barrier from which there is no return but, unlike rites of passage, which are positive and purificatory, the surgery is prophylactic, and by some is seen as retrogressive (Black, 1992; 2000). The individual's status within society is not being enhanced or restored, but redefined as they pass through a transitional social state to their permanent altered form, which may well cross social taboos. Patients report experiencing anxiety and fear of being ‘found out’ as no longer being able to fit within ‘normal’ behaviour, transgressing accepted patterns and practices for elimination. Such beliefs are cultural phenomena, but, for many, fear of social exclusion is part of the challenges faced by the individual as they try to find ways to modify their behaviour, hide what they see as their stigma and return to their culture and society from whence they came (Goffman, 1968; Black, 2000; Kilic et al, 2007; Black, 2012; 2018; Polidano et al, 2020).
Methodology
A qualitative approach was used for Black's previous studies (Black, 1992; 2004) and the latest (Black; 2018), which explored the coping styles patients use to cope with their altered lives, as this focuses on words and languages rather on statistical values, with an inductive relationship between theory and research (Creswell, 2014). Descriptive phenomenology is epistemological in nature, involving systematic investigation of consciousness to explore the lived experience of the individual (Giorgi, 2009). The assumption is that while the lived experience is individual, it is possible to explore and seek for the essence of this within specific groups (Giorgi, 2009). Using in-depth interviewing, each individual is asked to describe and explore their past and current experiences of the phenomena being studied, together with their accompanying interactions with others. The focus is on describing the individual's lived experiences with the aim of providing rich and detailed descriptors in which no one essence is prioritised over others, and all interpretation is within practice (Giorgi, 2009; Creswell, 2014). Phenomenological research can help the health professional to increase their knowledge of individuals' challenges and needs, enabling them to offer appropriate support and guidance (Van Mannen, 2014).
Key comparative findings
Reviewing the findings of the research by Black (1992), Notter (2002) and Black (2018), two main themes were found to cross the decades. These were psychological problems and long-term effects of the physical changes and challenges that arose after stoma formation. Although described separately, these were in reality linked, with those who had been able to overcome the psychological issues coping better with the physical ones.
Clinically significant psychological problems
The development of significant psychological problems can occur immediately after surgery, during the transition period or later, and for some may remain for the rest of their lives (Borwell, 1997; White, 1997; Black, 2000; Black, 2018). The suggestion by White (1997), more than two decades ago, that patients who expressed dissatisfaction with pre-operative information experienced more clinically significant psychological symptoms, has been found repeatedly in studies since then (Corner and Wagland, 2012; Black, 2018). These problems include alienation, the expression of feelings of difference after their stoma surgery, and loss of self-esteem and confidence. For others there are feelings of shock and disgust on first sight of the stoma, reactions reported to be elevated in individuals who have not been prepared pre-operatively for what to see or expect, and those for whom the surgery results from an emergency situation (Wade, 1989; Persson and Hellström, 2002; Black, 2004; Borwell, 2009; Mols et al, 2014; Burch and Black, 2017). It is at this point post-surgery that the individual has to accept their body has ‘failed’ them, necessitating surgical intervention, over which they had no actual control and which permanently altered their body and its functions (Notter and Chalmers, 2012; Black, 2018). This loss of autonomy is difficult for many patients. While they are grateful for the surgeon's expertise, nevertheless the reality of the outcomes can be hard to learn to live with. The challenge this brings can be seen to have remained unchanged across the decades. In Black's 1992 study a patient said:
‘… it's things you've never seen in your life before…a …stoma something you've never heard of…. It's all strange and has got to be learned’
Again, in Notter's 2002 study a respondent said:
‘It's not normal… one day I was myself… now I got this ‘thing’ on my stomach … I'm different…I'll never be me again…’
Similarly, in Black's 2018 study a patient commented:
‘… this is not normal is it…this… coming out of my abdomen…it should be coming out of my bottom… how do I learn to live with it…’
For a minority, the feeling of rejection of their ‘new’ body is so strong that they find it impossible to accept or relate to the stoma, referring to it as something that belongs to the surgeon who created it rather than being part of their own body (Notter and Burnard, 2006; Van Mannen, 2014). In extreme instances, patients totally dissociate themselves, as illustrated by a patient who, when asked about his stoma responded used third party, objective language:
‘… well there it is … it looks OK but I don't ask it … I don't care …’
When the specialist nurse went on to ask where ‘there’ was, he pointed to the empty chair beside him and went on to state:
‘it's on the chair there … the thing … I suppose I have to do it each day [change the stoma bag] but I try not to … I don't want people thinking it is part of me of who I am’
For such patients, without professional help to accept and adjust to life with a stoma, quality of life will be affected and their lifestyle restricted. Therefore, it has to be a cause for concern that this patient had not been recognised as having acceptance and adaptation issues at the time of surgery. Instead, he had gone on to develop entrenched negative views and did not even want to seek psychological help, seeing his problems as unchangeable as they were totally related to the stoma that he had rejected. Only once the need for help had been accepted could effective support be offered to him, but it has to be acknowledged that such delayed help may not be totally successful (Van Mannen, 2014).
For some patients, the feelings of anger, anxiety and depression are compounded if they struggle to cope with the physical effects and altered body functions following surgery. The intensity of emotional reactions appears to be related to both the physical evidence of the surgery (the stoma) and the assigned importance of fitting within accepted social norms (Polidano et al, 2020). Factors affecting adaptation include, but are not limited to, the disease process, diagnosis, treatment and medical and nursing care, both in the hospital and on return to the community (Black, 2000).
Long-term effects of the physical changes and challenges of living with a stoma
The social taboos that surround body matter elimination in western cultures are legion, with each individual's feelings about body matter elimination embedded deeply within the psyche. There are strong prohibitions in western societies on the uncontrolled passage of urine and faeces. Frequently referred to as unpleasant, smelly and dirty, faecal elimination is not seen as an appropriate subject for public discussion (Black, 1992; Chelvanayagam, 2014). Thus, the individual with a stoma may see themselves as a person who is being made to transgress social expectations and personal responsibilities, which adds to the difficulty of coming to terms with their changed body and body image, the stoma and the accompanying loss of control of continence (Annells, 2006; Corner and Wagland, 2012; Burch and Black, 2017). Accepting the changes requires refocusing and reassessment by the patient:
‘I'd been changed forever … there was no going back … it wasn't easy … but I had a family … I had to try …’
Only then could they continue their social and private roles and responsibilities and not become a marginal member of that society (Polidano et al, 2020). When bowel surgery, including stoma formation, is mooted as a surgical procedure, the individual's body image changes forever. The patient can feel that their body has become objectified, that they have lost their personal autonomy, with their personal bodily functions altered beyond acceptability (Black, 2018). When looking to their future, patients report feelings of shame, disgust, anger, resentment and intense disappointment as they see their hopes and dreams ‘disappear’ (Notter and Chalmers, 2012). In Black's 2018 study, one respondent said:
‘… I couldn't take it in … I thought how on earth will I manage … what am I going to do … I was devastated… the diagnosis was bad enough … but this …’
Learning to cope at the technical level is learning to accept and control what they see as pollution of their body, their personal environment and the associated uncontrollable phenomenon of crossing social taboos. They have had made public what are seen as very private activities. If patients can learn to cope with the physical changes and manage their body ‘technically’, then they can continue with what they see as normal life, performing their public role as if they are ‘still the same as I was' (Black, 2018). In this context, coping can be conceptualised as adaptation following illness, and includes the use of cognitive and motor activities to preserve external knowledge and awareness of their identity, in their own eyes compensating for what they see as their irreversible impairment (Polidano et al, 2020). Although this does not make the challenges associated with living with a stoma disappear, it does help hold them in check.
For some, even when they appear to have mastered the care needed, they do not have the self-confidence to believe they have been successful:
‘… every one tells me I don't smell … I know I do … I know they are not telling me to protect me’
This patient was convinced that it was impossible to prevent what she referred to as ‘bad smells'. Family and friends had tried to reassure her, but she was adamant, and needed long-term guidance and support to overcome her fear of crossing social taboos. In other instances, it was hard to determine whether the main concern sat with the patient or his/her partner as the following quote from a patient's partner illustrates:
… ‘The smell seems to permeate the whole house and my wife always has a tin of air freshener everywhere … in every room … it's most embarrassing when visitors are here … she always has the windows open’
Further discussion elicited the information that the partner had been excluded from advice and discussions before and after surgery. It was difficult to ascertain the extent to which odour was a problem, because it had not been discussed and possible solutions had not been sought. This fits with Notter and Chalmers (2012) finding that families reported being ‘left out’ of discussions, and were expected to cope as best they could, when in reality, they too needed help and guidance.
Managing the knowledge that others know about their changed physical status requires a sophisticated coping behaviour. Many patients make every effort for concealment from their ‘audience’ of all evidence of ‘dirt’ and the notion that faeces which many described as ‘dirt’ are looked after in private. In trying to hide their efforts for control, the individual often aims for ideal standards, which they maintain in public by the sacrifice of some of their private standards. At the inter-subjective level of coping, the individual constructs schema and rhetorics to make sense for themselves of what has happened and vocalise a plethora of questions and concerns:
‘… Am I going to be able to wear nice clothes again? Will I be able to go on holiday? Am I going to want to go out and meet people and do my shopping again … I felt different. I … in hospital it was OK, but when I got home and tried going out I felt different … exposed you could say … that everyone knew what was under my clothes'
This quote illustrates the frequently stated fear that everyone will know that thee patient has a stoma, and although reported nearly three decades ago, all these issues are still evident today, and continue to restrict day-to-day activities (Black, 2000; Borwell, 2009; Nichols and Reimer, 2011; Burch and Black, 2017; Black, 2017; 2018). In Black's 2018 study, one patient said:
‘… how can I use universal changing rooms when I go to get a new dress or whatever … if they all see a bag of shit hanging on me they will all run out…is this is what is going to define me forever now?’
For some it is the combination of factors that is hard to overcome. Coping with issues such as their diagnosis and the pain following surgery can be accepted and understood by family and friends. However, while in private they may have learned to cope, some of the resulting physical manifestations that are not in their eyes suitable for social sharing can lead to major changes in life and lifestyle:
‘… I coped with the pain, I coped with the diagnosis, but how can I be expected to carry on my job with this awful smell and the continual noise … I'll have to give up my job and stay at home … We will never be able to go on holiday again’
Box 1.Patients' comments showing anxious preoccupation, helplessness and hopelessness and avoidance
| Anxious preoccupation | |
|---|---|
| Searching for reassurance | ‘I go to my GP but he seems to have little time for me and he makes me feel I am time wasting … I go to the group meetings but there is never anyone there to ask … they are not medical … I have my yearly old age check but the practice nurse is so young she doesn't seem to know much about what I am talking about … she asks about my stoma but does not look at it’ |
| Constant worry | ‘… I lie awake at night wondering if the cancer will come back again … if it occurs the third time that will be the end … I cant go through that again I'm too old … will I die tonight or will I have another day with all this worry’ |
| Physical sensations perceived as disease progression | ‘… how will they know if it has come back … would it show … does the pain in my side mean it has come back … I weigh my self every day to see if I have lost weight … no I'm not trying to loose weight heaven forbid but that would be a sign wouldn't it’ |
| Helplessness and hopelessness | |
| Overwhelmed by diagnosis | ‘It has been a very difficult way … I was told I had a bowel cancer but could not believe what I was hearing … they must be talking about somebody else … they (the hospital) did the op … but did not have to have one of those awful bag things … but 6 years later they say I have bowel cancer again … does anyone know what they are doing any more I ask you (pt shouting) … I had to go to a specialist hospital in London who deals with things like this and had a Professor somebody or other … would he be any better … no because he gave me a bag for good … heaven help us!’ |
| No active coping strategies | ‘I was given poison [researcher asks patient to qualify] you know that, that chemo stuff … it was every week ….I had enough after 18 weeks and stopped … my veins were so bad ….I don't like the stoma, never have and never will …..I refuse to change it every day … I wait for a leak or it is so full … the special nurses told me how to do it and when to do it but what do they know … I refuse to empty it (the appliance) when I am out and do not take any spares with me’ |
| Self-blame and a burden to others | ‘… all my family have had cancer and I suppose it will come again … I have not spoken to the family they are not interested anyway and have their own lives (refuses to discuss close family support or if he has a wife) … death does not bother me … why should it … I was an engineer in Iraq so I know what is to come … just another burden for the family’ |
| Avoidance | |
| Minimisation of the disease threat | ‘… yes of course I realise there is always a possibility of recurrence but I shall keep up my activity and eat well …. it is not something I will worry about until it happens … I am sensible … I will not be complacent’ |
| Undertake distraction techniques | ‘… when I reached the five year mark and was discharged friends said I should do the cancer runs and raise money for research … why … I am OK … I'm off to do the things that I want to do that I had to put on hold … I'm better … what else is there to say … I don't want to dwell on what happened’ |
| Maintain life as if everything is normal | ‘… It is over a long time ago … I am well and carry on with my life … everyone always tells me how well I look and I agree with them … but … it is always there at the back of my head … but I just move forward all the time’ |
Source: Black, 2018
And in a more recent study, a patient said:
‘It is the fear that there may have to be someone else who will have to change the bag for me … I pray I can go on coping … I stay at home … I'm afraid the bag will swell of I go out … make people stare at me’
Such anxieties impact on long-term family and social interactions, adding to the risk of increasing social isolation. This in turn impacts on anxiety, which itself is affected by fatigue, pain, and the challenge of having to overcome these issues in combination with exacerbation of other comorbidities. Ways need to be found to prevent this negative cycle adding to the challenges faced by patients, who in many instances are also facing the long-term reality of the diagnosis that led to surgery. It is essential that information and support are developed to meet the needs of this group of patients, and to do this all guidance has to be in a format that can be tailor-made for each patient, accepting that one style does not work for all.
Individual coping styles
The research by Black (2018) was developed because of the consistency of the findings which, as indicated above, show that the same issues continue to persist. The cultural construction of illness is a personal and social adaptive response. The malfunctioning of the body and the psychological process involved becomes disease, while the psychosocial disruption becomes illness. Illness will invoke cognition, valuation of the symptoms and possible breakdown of family and social interaction. Therefore, illness shapes disease into behaviour and experience, created by personal, social, and cultural reactions to the disease. Van Mannen (2014) argued that the individuals can be seen as being out of step with their bodies after surgery and that these processes create explanations (an explanatory model) to help patients recover a relationship with their psycho-physical wellbeing that lets them move on.
All societies create these explanatory models to help construct reality and impose meaning on situations seen as unknown and challenging, but these may be hazardous if accepted as reality, rather than a way of organising and explaining alterations in normal functioning. In health care the different rationales supporting these models can be difficult to reconcile in practice. Each patient's individual, explanatory model comes from their response to a particular episode of illness and is not necessarily the same as general beliefs about illness held by the individual's particular society, which may be idiosyncratic, changeable and influenced by culture. By contrast, the medical model, which provides treatment, is based on learned scientific evidence that offers strategies to deal with each particular set of symptoms. The doctor and patient, each using their own explanatory model, need to interact to try to understand and interpret the other's model, recognising the individual's subjectivity (regarding their disease) and the doctor's objectivity (regarding the disease process). Led by the medical model, the clinical process is seen as a way for the individual to adapt to worrying news and circumstances with the adaptation process often reflected by the words ‘managing; ‘coping’, and ‘adapting’.
However, the way the individual constructs the news given to them about their diagnosis is a personal and social adaptive response, and the terminology of the medical model has a different meaning for different individuals. Black's (2018) study illustrated the range of individual difference. It revealed 30 consistent descriptors/feelings from the participants in the sample, which needed to be collated and combined into a format that would enable specialist nurses and other health professionals to offer patients appropriate information and guidance throughout their lifespan. These thematic insights, based on interviewee's stories, are insight cultivators, a reflection and interpretive process (Van Mannen, 2014). Therefore, further iterations of the analysis processes were used to refine the descriptors with the emergence of five distinct categories or coping styles:
- Anxious preoccupation
- Helplessness and hopelessness
- Avoidance
- Fatalism
- Fighting spirit.
Each of these different coping styles has implications for health professionals. For each group, the three main issues that arose have been illustrated by quotes from participants (Black, 2018).
Anxious preoccupation
Participants reported that they constantly worried about the stoma. Every time they looked at it and every time they had any symptom at all, for them there was the possibility of recurrence of disease. Insomnia was a problem for some of them and they would lie awake until the early hours feeling exhausted, but when they got up, they worried even more, including that they would never sleep properly again. Worry is a natural, instinctive reaction to bad news. However, those in this group, even after five years, still worried about all aspects of life. They worried that any perceived pain was a recurrence, that they smelled because of the stoma, that others would think they were incontinent. There appeared to be nowhere they could go for reassurance about their worries. Ending active treatment is a life event as much as diagnosis was, but support for all these worries was lacking.
Helplessness and hopelessness
For some of the interviewees, the original diagnosis was overwhelming, even though they often suspected what they were going to be told. The barrage of information coming at them was overwhelming and they were not able to form coherent coping strategies to deal with the diagnosis and treatment regimen. For many, the thought of having a permanent colostomy was so overwhelming that they felt they would never be able to continue with their life as they knew it. They saw themselves as a burden to their spouse and that no one would want to be near them as they would always smell (Black, 1989; 2000).
Avoidance
Cancer patients and/or family members often report being ashamed of their anxieties about their own or their loved one's diagnosis and treatment, even when they have been told that they are ‘cured’. They have received major input from professionals and support from family and friends, so once active treatment is complete they report thinking that they should now ‘feel OK’ feeling ashamed of themselves that they ‘cannot put it all behind me and move on’. They state that they do not want to upset their family and friends by expressing their ongoing anxieties. They feel this would be an unfair burden to place on others, but fret that they are holding up their own recovery. Although many can overcome this, for some this will continue throughout their lives and they will undertake activities to avoid family and friends asking how they are or how they are coping. Even after many years post-treatment discharge, some still employ distraction techniques to avoid the discussion of how they feel and how they are doing.
Fatalism
Goodhart and Atkins (2011) suggested that low mood, or even depression, is one of the most common side effects of cancer. Although none of the interviewees expressed thoughts of depression or treatment for depression at any time, it seemed clear from the patient quotes that there could be an element of depression arising from the situation the individual has found themselves in. One indicator of this was the report of fatigue without any obvious cause. Fatigue, also one of the common late-onset symptoms of cancer, was still evident and it has to remembered this can also be a sign of depression. Often with diagnosis and treatment the individual can be stretched to their limit and beyond and often grieving does not take place. The bottling up of all these symptoms can lead to a fatalistic attitude and feelings. See Box 2 for patient comments.
Box 2.Patients' comments, showing fatalism and fighting spirit
| Fatalism | |
|---|---|
| Lack of control | ‘… she was so furious with the surgeon you know … he had (the surgeon) ruined her life…yet it was me in the bed … I was the one having to go through all this entailed and I didn't know what was going to happen … When the stoma nurse came to teach me she would (Pts wife) say tell her (the SCN) that I am not helping you with this … I felt so embarrassed by her behaviour’ |
| Acceptance | ‘… we rubbed along for 10 years after the end of my treatment … I have not seen anyone since being written off by the surgeon … not exactly written off but you know what I mean … the fatigue is the worst … I wish I could do more but no-one would know who I was now if I asked for an appointment, who do I ask then?….We have separated now … she couldn't cope … that's what serious illness can do to a family (appears tearful) I try and cope … how could someone leave you when you have a life threatening illness? … I don't know … I wish I could talk to someone … there are so many things I need to ask’ |
| Fate will decide | ‘… one day the SCN turned up at the door … it was about 3 months after surgery and she (SCN) had taught me to irrigate … she always said she would pop in if she was that way … I felt embarrassed as it was afternoon and I was in my pyjamas and dressing gown … why … because my wife had gone her sisters to stay and I couldn't be bothered … the SCN looked a bit surprised but did not say anything … she asked if my wife had accepted the stoma now … no if anything she was worse … she asked if I thought counselling would help her and offered to talk to the Macmillan psychologist for me … it would be a good idea but whether she will accept it I don't know’ |
| Fighting spirit | |
| Cancer and stoma seen as a challenge | ‘… when I was diagnosed ….I thought OK, well, how am I going to approach this … we enjoy our life (with his wife) and love our holidays abroad and no way are they going to stop … I am sure people who have stomas go away when they are well … they do don't they … I must look into how to do this … I go to stoma days (open days) and talk to the companies … I need to find what will suit me best … I have seen over the years how the bags change.’ |
| Information sought to help with treatment | ‘when I felt better afterwards (after the surgery) I investigated on the computer what might happen next … I had heard of chemo and wanted to be prepared … I wrote for literature from those people who deal with colostomy. [Colostomy Association] … knew I was going to see another doctor [oncologist] in six weeks and wanted to be prepared with questions … I suppose all the patients are like me … keen to know what goes on … well it was only the best [the oncologist's news] and I was back on track … no chemo or side effects to put up with … but mind you I would have taken and put up with whatever he threw at me ….I have had excellent treatment from the GP and hospital’ |
| To keep life as normal as possible | ‘… I am a lay preacher and I will continue … my health is good at present … we have been married 60 years and I definitely expect some more (years). … I had no psychological or emotional problems … I back at Am Dram [Amateur Dramatics] now and the choir … yes there was fear of the unknown but nothing seems to be unknown these days with a computer … it's a minor inconvenience. … my bum in a different place now where I can see it.’ |
Source: Black, 2018
Fighting spirit
Although it is very common to have worries after being diagnosed with cancer and body image change, many individuals can have a ‘fighting spirit’ from diagnosis and through treatment and onwards as they return to their normal lives. They do not want to ‘wallow’ in self pity and have the temperament to continue their lifestyles and jobs. They will often research other forms of treatment so they can confidently discuss regimens with their doctor and how they want their treatment to progress. Once finally discharged they are able to continue their inquiring into cancer and will often want to help others who may be finding it hard to move on in their lives after treatment. See Box 2 for patient comments.
Manifestations of the five coping styles
The following patient quotations illustrate how these coping styles can manifest themselves when common and recurrent issues are considered. On the first sight of the stoma after surgery, the patient may look at their abdomen and stoma in a detached way or even as a curiosity and feel an existential amazement that what they are seeing is part of them (Van Mannen, 2014). After surgery and the raising of a stoma, patients will often state that their body is ‘rebelling’ when the stoma bag leaks while trying to change the appliance, as one participant graphically described:
‘…The nurse slowly removed the bag and kept asking if I was OK…I was dreading it … wondering what I would see…all I could see as she removed it was poo pouring out like a river of chocolate…at any other time I could have joked about the chocolate…but I just felt so embarrassed for the nurse…she was frantically mopping me and the floor with paper towels… as fast as she did there was more and more… luckily another nurse came into help…every time I saw the poor nurse I felt so embarrassed’
Coping style: anxious preoccupation
It is essential that this ongoing anxiety and embarrassment are addressed or permanent anxiety and worry can develop. Everyone has a special relationship with their body. If they are unhappy with the way they look, they can try and change their external image but they cannot hide from their surgically altered body (Polidano et al, 2020). One participant had joined a support group with the hope of accessing advice and help from those who had already been down the path he was now walking, but had not known how to raise his concerns. Coping style: anxious preoccupation:
‘…I go to the group meetings … but there is never anyone there to ask’
If not addressed, this fear can even impact on perceptions of consultations with health professionals, with the result that they gain less from their main link with services. For some participants, the solution had been to focus on creating an external reality that they believed was acceptable, while keeping their own reality secret for fear of rejection. Coping style: avoidance:
‘I keep it a secret from everyone that I have a colostomy’ I don't like meeting other people so I don't go out. When I have to I dress carefully making sure my abdomen is well covered and protected and pray that I do not have a lot of wind to swell the bag and people may stare at me’
The anxious preoccupation by patients, that they would be marginalised by their community once their condition is known, impacts on their willingness to participate in social interactions.
These comments are typical of patients for whom bodily functions such as excretion are not acceptable social subjects. As they expect others to share their perceptions, they place negative inferences on professional interactions, not raising what they see as unacceptable phenomena such as odour, noise and flatus, even with those in a stoma support group who may be experiencing similar issues. For some, this sense of no longer fitting into society begins at diagnosis, when without experience of what life will be like after surgery, they only see the worst possible outcomes, seeing themselves as social pariahs. This kind of initial response is not unusual, as Kelly (1985) first illustrated when he gave a graphic description of his shock and rejection when he first saw his stoma. The terms he used were mirrored by the participants in this study, including the following, showing the coping style helplessness and hopelessness:
‘…I said I did not want to be smelly and [have to] avoid social situations … I felt as if it was the end of my life and [I] would be seen as a leper’
It has to be a cause for concern that in the decades since Kelly's (1985) surgery, societal attitudes have changed so little that patients are still afraid of the stigma that could occur from people at work and socially knowing they have had surgery resulting in a stoma, as in this quote (showing the coping style avoidance):
‘… I don't know how I am going to be able to handle work…I have to stand up and give regular talks…just look how my bag blows up and the noise…well…it will show under my suit jacket and everyone will notice…what am I going to do…I can't retire I don't want to I'm too young … I need to find ways to look normal’
Although total rejection by patients of what they see as a distortion of their body image may be relatively rare, the participants in Black's (2018) study showed that, for some, anxiety continues in terms of elimination of bodily fluids through different orifices, changing social boundaries. One patient commented about joining a support group (coping style: fatalism):
‘the surgery and stoma have ruined my life…. I know it was cancer…but I was bullied into surgery and its outcomes… no information, not told how it would affect me…. I hate the stoma…always have…always will’
Ways need to be found to help patients adjust, recognising that they cannot return to their former state, but need to define and accept entrance to their new status, as the following quote from a pragmatic and realistic patient (showing the coping style fighting spirit) suggests:
‘…Well I thought…what do we have here…I had no idea what it was going to look like…I presumed just a hole in my abdomen…not this red thing…but let's be sensible…at the end of the day it's just my bum in a different place’
Coping with such disconcerting changes, needs to be discussed with the specialist stoma care nurse if long-term issues are to be avoided. Health professionals need to develop tools to recognise the different coping styles and adapt their approach accordingly to plan individualised long-term care plans. There will be challenges to implementation, but there are indicators that holistic care and services can be both cost-effective and used to improve care and QoL for this group of patients. However, it is essential because, in addition to improving health, wellbeing and quality of life, it is recognised that stoma patients who find adaptation to their new way of life difficult will more often experience long-term physical, social and economic consequences, which in turn leads to an extensive use of health services.
Conclusion and recommendations
The quotes used from the study by Black (2018), illustrate that all the interviewees reported some form of past or present psychological, psychosocial and physiological problems that they felt that no one addressed. Clinical nurse specialist (CNSs) in stoma care are key members of the multidisciplinary team and their perspectives are essential to inform future developments in long-term care provision for stoma patients and not just in the early months after surgery. However, while some patient participants felt that their CNS could and did discuss many of the issues that had arisen, others stated that their CNSs were diffident and not able to discuss key issues. There was also a group who had little contact with CNSs, and reported that general nurses lacked time to sit and discuss ongoing issues, while others reported nurses stating that they had no specific training and education in bowel and stoma issues.
The findings presented here have clear implications for nursing practice. The essence of specialised nursing knowledge is directed towards helping individuals regain health. CNSs in stoma care can use their skills, expertise, education and training in stoma care to provide physical and emotional support for the patient and family, coordinate care services and to inform and advise patients on clinical as well as practical issues, leading to positive patient outcomes. It is clear from the literature and the interviewees' comments that the CNSs in stoma care are key workers, treating and managing the health concerns of stoma patients, working to promote health and wellbeing in the patients they care for. They can also reduce treatment costs, increase efficiency, drive innovation and provide valuable information for service redesign as well as enable multidisciplinary care and communication between different teams (Johnston et al, 2018). Therefore, although there are currently no clearly defined pathways for this change, nurse specialists in colorectal and stoma care are well suited to prepare and deliver care-for-life plans, which will need to be delivered mainly in the community or at the GP practice.
There needs to be an adaptation in the way individuals are supported. The five shifts in care needed using patient recorded outcome measures (PROMS), as described by Corner and Wagland (2012) in their report on patients' responses to a National Cancer Survivorship Survey, are still not in use, but should urgently be considered for implementation. They are:
- A greater focus on recovery, health and wellbeing after cancer treatment
- Holistic assessment, information provision and personalised care planning
- Supported self-management
- A move away from clinical follow up to tailored support that enables early recognition of the consequences of treatment and the signs and symptoms of further disease
- Measuring experience and outcomes.
However, originally the PROMs (Corner and Wagland, 2012) did not go beyond the finalisation of treatment and the discharge of the patient, as one patient put it ‘abandoned to fall into the great black void.’ Therefore, the recommendation from this article is that these measures should be used for care throughout the lifespan.
Key Points
- Current models of care are not meeting the needs of the stoma patient
- Health professionals need to be more proactive in the care of the patient who has a stoma
- Research suggests that many stoma patients feel that the stoma care nurses are not easily available when the patient perceives they have a problem and needs help and information
- Stoma care nurses need to be able to offer the stoma patient a care-for-life plan to support the patient after their treatment and into the future
CPD reflective questions
- How do you think the service you currently offer could be improved to offer a better service for your stoma patients?
- Do your stoma patients often say that it is hard to contact the service?
- Consider some of your patients who may have had a stoma 5 or 10 years ago. When did you last see or hear from them? Are they managing their lives in the way they would want?
- Interviewees in the study said their GP or practice nurse had little time for them or said they could not help. How could you improve this situation for the patient?