I am a stoma nurse and a play/creative arts therapist. My main focus is in the area of the loss, grief and trauma that people may suffer following illness and stoma surgery and how it may affect them. Each person's experience in hospital and how they process this experience is unique to them. I developed the creative arts workshops with another therapist to provide a safe space for people who have stomas, to explore their emotions around illness and surgery and life with a stoma. I was pleased to be nominated and to be a runner-up in the Stoma Care Nurse of the Year category of the BJN Awards 2020.
It is important that, as professionals, we are aware that our stoma patients may potentially be traumatised by events that occur in hospital and this risk is increased in times of high stress when patients feel more isolated and may be feeling more vulnerable as a result.
The experience of undergoing surgery can be a significant trauma for some patients.
Loss is a unique experience for each individual, and it can derive from any significant loss, not necessarily just from a bereavement. Pinto et al (2016) state that postoperative complications and/or being left with a permanent disfigurement can not only impact a patient psychologically, but can leave him or her with high levels of distress, anxiety and depression, even more so than those who have suffered an actual bereavement.
Stoma formation can lead to serious psychological difficulties. Visceral emotions linked to disgust can harm body image and sexual intimacy (Smith et al, 2007). The common psychological repercussions of stoma formation—anxiety and depression compounded by life-impairing social isolation—have long been a subject of discussion. Likewise, providing appropriate psychological support has been a persistent concern for stoma care professionals (da Silva et al, 2008).
As stoma formation physically alters the body's function and appearance, it also alters a person's perception of their own physical appearance. People tend to be conscious of living in a society where social standing is linked to normative beauty standards, and the appearance of an internal organ and bodily waste outside the body can feel like a cause for shame and loss of status. Such a change in physical appearance can decrease a person's confidence, self-esteem and overall evaluation of their own worth, potentially leading to social isolation (Liao and Qin, 2014).
A negative body image has a particularly significant impact on sexual intimacy. Given that many feel sexuality is an intrinsic part of their being, it is essential that people with a stoma are helped to incorporate their stoma into their sense of self and to reconcile it with their sexuality (Houston, 2017).
Those who have experienced trauma and loss need to make sense of it and its consequences. This gradual process of relearning both the world and the self may begin with the acknowledgement of the loss. The objective of time for mourning is not to ‘get over’ a loss, but to allow a person to affirm their own existence in spite of what has happened to them (Neimeyer, 2001; Stroebe et al, 2011). The nature and intensity of this sense of loss and the necessary process of adaptation will depend on an individual's attitudes and life experiences.
‘Disenfranchised grief’ is the grief we feel over losses that we have difficulty talking about and therefore may not receive the support we need (Doka, 2002). This concept of disenfranchised grief was extended to include ‘self-disenfranchised grief’—this is a failure of an individual's self-empathy—that leads an individual to disapprove and disown part of themselves (Kauffman, 2002). We can prevent grief from becoming disenfranchised by exploring the grief that we feel and by expressing our emotions around this grief.
For those with a severely affected body image, the goal of this process may be to ‘establish or re-establish a sense of identity unrelated to the body' (Manderson, 2005)—in other words the stoma is one part of them not the whole. For some, this is too difficult to do alone, and they may require help to adapt and learn how to cope. Thus, many people with a stoma will not only need instruction in appliance management, but also professional psychological support to facilitate the integration of their bodily reality into their sense of self.
In my role as a stoma nurse and a creative arts therapist, I explored research suggesting that communication can be made easier and more direct through the use of symbols and images (Winner, 1981; Bolton, 2008). I found no literature to suggest that creative arts therapy might have a negative effect on those experiencing loss. In fact, research on creative arts therapies suggests that expressing feelings, even those related to a negative experience, is a positive experience overall that provides a sense of relief (Neimeyer and Thompson, 2014).
The workshops were designed to facilitate this exploration of loss and grief, as well as issues related to body image and sexuality. In response to the social isolation people with a stoma often experience, the workshops were centred on the creation of something in the presence of others. Participants had the opportunity to give mutual support and build relationships with each other. The contact they had with the therapists who were running the workshop was an essential part of the process. These therapists worked intuitively, with a deep level of empathy and understanding, and were attuned to the participants' needs. This emotional holding and containment was fundamental, because it is through empathy that people make their deepest connections.
Certain strong emotions can be difficult to make sense of and articulate as a verbal response to a direct question. However, these emotions can be more easily understood and expressed by physically attaching them to a created image or object—known as a transitional object—and this creative process allows emotional themes to be explored and identified (Souter-Anderson, 2010). Participants could then reflect on these feelings and develop self-empathy and self-love, which is essential for creating a new way of being in and with the world. It is the very experience of art making, of shaping the materials, that restores people to their authentic way of being.
Art can allow for the expression of inner experiences that are beyond words and it can be used as a valuable tool for symbolic communication without direct reference to a particular topic. Creative arts therapy gets us out of our thinking heads and into our bodies, where feelings and emotions are stored. All our creative expression begins with the sensory experience of the body. Feeling is held in the body. A renowned expert on post-traumatic stress, van der Kolk (2014), asked the question:
‘How can traumatised people learn to integrate ordinary sensory experiences so that they can feel secure and complete in their bodies?’
All of our experiences (stresses, injuries and traumas) shape our bodies, and our physical life and our feeling life depend on embodiment. Embodiment is how we are, and the way we are in the world, and how we perceive the world to be. It is essential to our existence. We need to make direct personal contact with the essence of the body's innate capacity to feel and to heal (Levine, 2010).
Clay was one of the creative mediums we used in our workshops. Clay work involves a very primal mode of expression and communication. Making something concrete out of a piece of clay, which is a symbol and a metaphor of one's inner world, is an alchemy-like process: transforming pain into meaningful expression (Souter-Anderson, 2010). Clay work requires body movements and endless opportunities for touching and moulding. It makes possible a non-verbal language for the creator.
‘When clay is available to touch, to hold and squeeze, the hand comes to life and before long, we can count on something special being created.’
As our scope of nursing practice states, nursing care is holistic in nature, grounded in an understanding of the social, emotional, cultural, spiritual, psychological and physical experiences of patients (Nursing and Midwifery Board of Ireland, 2015). The care of our patients is not limited to their stay on the ward—we need to search for ways that can support our patients to live as full a life as possible. This involves looking at a person as a whole, not just the illness/postoperative complication. Our every interaction has the potential to make a difference.
The main challenge for the future of the workshops is to ensure that they are accessible to all patients who might benefit from them. Nurses and other health professionals could also be offered access to creative arts workshops as a means of self-care and to provide them with ‘hands-on’ experience of the creative arts and their potential to be of benefit to their patients. Through these workshops we can explore the importance of giving a patient that space and opportunity to talk.
We should not underestimate the difference that can be made to a patient's recovery when we put our agendas aside, just for a moment, not simply to listen but to really hear what is being said.