Exposure to patients life worlds require reflective strategies

Exposure and then…..
Care ethics on exposure to patients life worlds and the reflective
strategies to get beyond exposure.
A Report on a seminar of researchers and care professionals in Flanders, Belgium, Sept. 2016

sTimul seminar on exposure in care ethics

From 6-8 September, sTimul Moorsele, a care ethics lab () organized a care ethics symposium on the topic of exposure. To this symposium, researchers were invited from Belgium and abroad (the Netherlands England, France, Denmark) who research exposure as well as practitioners who are involved in organizing  (variations of) exposure experiences. The “experiments” conducted by Linus Vanlaere with Nele Jannsens, Sarah Janssens, Karen Versluys and Mieke Grypdonck were the occasion that gave rise to this gathering. The symposium was to provide more insight into exposure as an experience and the place of exposure in fostering care ethically inspired care.  Katrien Ruytjens moderated the seminar. In what follows we will discuss some of the salient issues discussed in the symposium.

What is exposure

Exposure is a concept from the Theory of presence of Andries Baart (2001). The concept was derived from his empirical study of pastors working in disadvantaged neighborhoods. Their specific way of working was studied and gave rise to this Theory of presence. This theory is closely related to the relationally based ethics of care (Leget, Gastmans, and Verkerk, 2011;Tronto, 1993;Van Heijst, 2008;Van Heijst, 2005). Exposure is a period of latency and immersion into the world of the care receivers that professionals impose upon themselves in order to be more able to give care ethically inspired care, in this case care based on presence. Exposure experiences have become a regular ingredient of projects trying to bring about (more) present care and are set up as “learning experiences” by organizations such as the Presence Foundation (ww.presentie.nl). sTimul as a care ethics lab undertakes activities that are closely related to such exposure experiences, in fact, the aim is to produce similar effects.

The effects sought are in the first place a better understanding of the lifeworld of the care receivers. By being immersed in the daily live of their care receivers, the professional  learns to look at daily life from the perspective of the care receivers, instead of from the perspective of the care-givers. Indeed, the latter is what most are used to and have learned in school: they have been taught to convert living experiences into problems that match their professional frameworks and their professional competencies. Not being able to resist the temptation to express anger violently when offended is converted into post-traumatic stress syndrome (or even worse, PTSS); worrying, because of your experience of “not being seen”, whether your daughter will be cared for well, is converted in lack of trust or in excessive worrying or overprotective behavior; missing your deceased husband to the point of not feeling a sense in life is converted into maladaptive coping or maladaptive mourning. During their immersion in the world of the (potential) care receivers, the professionals learn another way of looking and acquire another vocabulary, a vocabulary that fits this lifeworld and describes what happens from their point of view. The immersion in the world of the care receivers, when successful, also makes the professionals more humble. They experience and learn that many problems are much more difficult to tackle than their professional education has made them think. They discover that solutions may require what is not present in the situation and living conditions of the care receivers; that, despite the care receivers’ strengths what is needed may be impossible for them to do; that what seem simple solutions, in their lives, is not simple at all. And they learn to recognize instead of negating it, that professional care cannot provide a solution to many ailments, pains and difficulties that human beings may be subjected to. They learn to recognize the tragic aspects of human life.

Exposure in sTimul

Baart et al. have studied the concept of exposure in detail and have developed several types of organized exposure experience which can be used to help professionals make their practice more based on the theory of presence, to make their practice more care ethically inspired (Andries Baart, Elly Beurskens). The exposure experiences they use consist of an immersion in the real world of the care receivers. The trainee tries, as much as possible, to maintain in what happens, the perspective the care receiver. The exposure experiences are supervised and the trainee is asked to write down reflections which can be discussed in this supervision.

In sTimul, a different modus of exposure is practiced (Linus Vanlaere, Mieke Grypdonck). Since several years the care ethics lab organizes what it  refers to as “empathizing sessions” (inleefsessies). Professionals, during one and a half day (and a night), take the place of a patient in a simulated nursing home. The last half of the second day is devoted to reflection, sharing and discussion. After about a month, the participants come back for a reflection day to discuss the meaning of the experience for their practice.

The participants choose a script that defines the ailments and limitations from which they suffer, e.g. a cerebral-vascular accident and a right side paralysis. The lab has aids to help make such limitations more real, such as glasses that prevent seeing clearly or weights that can be attached to the limbs to make movement difficult. The participants undergo what patients in nursing homes undergo: they are washed, are fed if they cannot feed themselves, they have to wait for care, they have nothing to do… They are cared for by student nurses who can decide what care they will give to the person. Other than in role play, only the limitations are defined, not the characters. The participants, thus, are left to their own to react to the situation. They undergo and react, rather than playing a role.

Participation in this type of exposure for many  proves to be an experience that really sinks in. Many professionals learn a lot from this type of exposure. They are often surprised how difficult it was to go through what patients they normally care for have to go through, and they have felt how good care can make the difference. Often, they are motivated to change their own practice or are more decided to do what can help the other person. A pitfall is that some participants may be inclined to generalize their own experiences. “I felt… and hence, I always will avoid or do …”. It requires vigilance from the coaches to avoid such unwarranted generalizations and to bring forward the need for attuned care instead.  (Joke Lemeingre and Leentje Dewachter). Also, not all participants benefit or benefit to the same extent. Some results of this type of exposure have been described already in the literature (De Bock, 2015;Vanlaere, Timmermann, Stevens, and Gastmans, 2012;Vanlaere, Timmermann, and Grypdonck, 2016). Ann Gallagher is researching the effects of these sTimul sessions in the RIPE project (see also Gallagher and Cox, 2015) and comparing them to other forms of ethical education.

Other forms of exposure

In the symposium two other forms of exposure with which sTimul has experimented, were discussed, the home care exposure and conversation as exposure.

The home care exposure

For persons working as home care-givers, a home care exposure was set up (Nele Janssens). Much in the same way as the sTimul residential sessions are conducted, care-givers are put in a simulated situation of needing care. In this case, it is care in their own home, as their care receivers do. They too have chosen a script with limitations that explain why they are in need of home care, and what limitations they have. Student care-givers provide care as they would do if the care receiver was really in need of care. The participants receive home care during half a day. The second half of the day is devoted to reflection, as is a follow-up day, about one month later. Because of the “experimental character” of the exposure sessions, the participants in the role of care receiver were interviewed afterwards, and the interviews have been analyzed. They show that this exposure experience too is a profound experience. Not only took the participants it very seriously, but their experiences were strong, profound and sinking in. The presence in their home of a care-giver, taking over their usual duties felt threatening. It felt like an invasion of their privacy and they experienced loss of control over their lives. They were amazed themselves about the strength of these feelings. They concluded that what seems nice and friendly, home care, can be disrupting. They understand how difficult it can be for patients to allow someone is one’s house and how important it is to give them as much control as they want to have. They understand that receiving care is at best ambivalent and that being grateful for it is not evident. They understand why their care receivers want to have things done in their own way, and why they can be very forceful about it. They also feel that what their supervisors ask of them, to give full consideration to what and how people want to have things done, is absolutely correct. Their motivation shifts form external (being obedient to what is asked by their management) to internal (understanding that, if they would not do so, the care receiver would suffer unnecessarily). The interviews also show how the exposure experience has contributed to their emancipation: what I do is really meaningful for those people and I can make an important difference by how I do my work. The “experiment” can be considered successful. This home care exposure, lasting only one day (including the time for reflection) is likely to produce the expected effects.

Exposure trough open conversation

Another “experimental” form of exposure, which was discussed at the conference (Sarah Janssens) consisted of an open conversation with a patient. The participants were asked to have an open conversation with one of their patients. The conversation had to deal with how life was for the patient, now that he/she had to be admitted to the hospital. The conversation did not deal with care, although care receiving could be discussed if the patient brought up the topic. It had to deal with his/her experiences or concerns, with his/her life. The care-givers did not have an agenda for this conversation, which was supposed to last about one hour. They were told to have the conversation with a patient of their choice, preferably a patient they had cared for in the week(s) before, and thus they (thought they) knew. The conversations were taped recorded, transcribed and the participants reread their conversations and discussed them in pairs and, if that was their choice  with the coaching of a project staff member. The exposure experience concluded with a focus group discussion, that was considered part of the experience, but also provided data for the researchers’ evaluation of it.

This short exposure experience proved to be very effectual. The care-givers found it difficult at first to talk with a patient without a task or specific questions, but found it very rewarding. They were amazed what it meant to them to learn to know a patient from a totally different angle. They became aware that, in their usual practice, they concentrated too much on their tasks, and lost out of sight what the patient (and his family) has (have) to go through. They drew conclusions from what they have heard for their own practice and wished that every care-giver in their team could have a similar experience. The data show that not only the conversations are producing these results, but that reflection and discussion are necessary parts of this exposure.

Exposure and then…

Exposure is not enough. It is not enough to make sure that the experiences are translated into practices. What is exactly needed, and what processes are needed for this translation is not clear yet. It is the topic of the doctoral research of Trees Coucke. Empathy certainly plays a role, but is likely not enough. Trees Coucke will investigate the role of moral imagination. Changes in practice depend on the balance between the power of the individual after the exposure experience and the barriers that need to be overcome and the facilitators present in the practice situation, one can hypothesize. We know that participants themselves consider allies among colleagues of great importance as well as support from the management. If the participants feel helpless to change the care in which they participate, their moral stress may increase (Joke Lemeingre and Leentje Dewachter)

In the hospital participating in the conversational exposure, an “expedition group” was set up, in which the participants of the conversational exposure were accompanying each other and coached by the project staff in finding ways to improve practice, their own as well as that of their team.

sTimul Moorsele has set up a Learning Community, a long lasting educational path for care ethical coaches to contribute to the care ethical content of care and education in the institutions that have participated in the sTimul residential exposure sessions (Madeleine Timmermann). The idea of fostering an ethical growth process is central. The participants want to foster their own growth as well as those of the persons with whom they work. In the Learning Community, the ethical growth process is reconstructed and structured around five ethical competencies, taken from the work of Gallagher (2006). In the course of the Learning Community the care ethical content of these competencies was (further) developed and deepened through discussing experiences. These competencies are: care ethical seeing (pars pro toto for using all senses); care ethical knowing; care ethical reflecting; care ethical doing and care ethical being. The latter competence is seen as the core and the basis of the others, defining to what degree the other can be used in a care ethical manner. As care in a care ethical sense in the first place concerns the way one relates to the care receiver this central place of care ethical being is evident.

The Learning Community is supposed to stimulate care ethical growth trough combining experience, reflections, sharing and theoretical frameworks. The experience may concern every day (work) experience or experience elicited by “exercises” the participants carry out (sitting in a waiting room and observing what happens to the care receivers; talking to staff about subjects relevant to care ethical practice but usually not talked about etc.). Reflections and observations (but not all) are shared in the group in order to expose them to different angels, to confront them with different view points, to come to a deeper understanding and refine them. The theoretical frameworks deliver the concepts or words that can be used to verbalize and analyze the experiences; the discussion also contributes to a finer elaboration of the concepts.

Action research was presented as a strategy fitting care ethics, and hence appropriate to foster care ethical changes. The relational aspect especially is in tune with the tenets of care ethics (Vivianne Bauer). However, action research covers a wide variation of designs and techniques, which can be closer or farther of the basic ideas of care ethics.

Questions…

The discussions at the seminar threw light on many issues. Looking at them from different angles, inspired by different experiences was very fruitful. However, the seminar ended with many questions unresolved. It provides a rich research agenda. Some of the questions require urgent answers in order to be able to foster care ethical care in situations of ever increasing scarcity.

Understanding the processes at play in exposure is, of course crucial to set up effective and efficient exposure experiences. Defining the “several virtues” of the different types of exposure would help to choose those exposure experiences that fit the person and the situation. An important issue is how persons not really inclined to care ethical care or hindered by something (personality, life experience, circumstances) can be brought closer to the ideal of care that does right to the person and takes in full consideration his/her vulnerability. Research into the (five) ethical competencies can help to further develop care ethical care as well as education in care ethics. And, of course, the questions pertaining the organization and societal context which can foster or hinder the deployment of care ethical care need to be dealt with.

Literature cited

Baart A. 2001. Een theorie van de presentie. Utrecht: Lemma.

De Bock, M. Een beklijvende ervaring? Een studie van zelfbeoordelingen van de gevolgen van deelname aan een sTimul-inleefsessie. 2015. Universiteit Gent.

Gallagher A. 2006. The teaching of nursing ethics: content and method. Promoting ethical competence. In: Davis A, Tschudin V, de Raeve L, editors. Essentials of Teaching and Learning in Nursing Ethics. p 223-239.

Gallagher A, Cox A. 2015. The RIPE Project protocol: Researching Interventions that Promote Ethics in Social Care. Working Papers in the Health Sciences, 1:1-8.

Leget C, Gastmans C, Verkerk M. 2011. Care, Compassion and Recognition: An Ethical Discussion. Leuven: Peeters.

Tronto JC. 1993. Moral boundaries: a political argument for an ethic of care. New York: Routledge.

Van Heijst A. 2008. Iemand zien staan. Zorgethiek over erkenning. Kampen: Klement.

Van Heijst A. 2005. Menslievende zorg. Een ethische kijk op professionaliteit. Kampen: Klement.

Vanlaere L, Timmermann M, Grypdonck M. 2016. Pflegehandeln am eigenen Körper erfahren – ‘Ausgesetztsein’ in simulierten Situationen. In: Conradi E, Vosman F, editors. Schlüsselbegriffe der Care-Ethik. Praxis der Achtsamkeit. Frankfurt: Campus.

Vanlaere L, Timmermann M, Stevens M, Gastmans C. 2012. An explorative study of experiences of healthcare providers posing as simulated care receivers in a ‘care-ethical’ lab. Nurs Ethics 19:68-79.

 

 

About the author: Mieke Grypdonck

Mieke Grypdonck

Mieke Grypdonck is emeritus professor of Nursing (Gent University, Belgium and Utrecht University, the Netherlands). She developed the concept of integrative nurgsing and contributed considerably to Nursing becoming a full-fledged scientific area.