=Paper=
{{Paper
|id=Vol-1103/paper7
|storemode=property
|title=SpirOnto: Semantically enhanced patient records for reflective learning on spiritual care in palliative care
|pdfUrl=https://ceur-ws.org/Vol-1103/paper7.pdf
|volume=Vol-1103
|dblpUrl=https://dblp.org/rec/conf/ectel/KunzmannRSS13
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==SpirOnto: Semantically enhanced patient records for reflective learning on spiritual care in palliative care==
https://ceur-ws.org/Vol-1103/paper7.pdf
SpirOnto: Semantically Enhanced Patient Records
for Reflective Learning on Spiritual Care
in Palliative Care
Christine Kunzmann1, Traugott Roser2, Andreas P. Schmidt3, Tanja Stiehl4
1
Pontydysgu, UK
{kontakt@christine-kunzmann.de}
4
University of Münster, Germany
{traugott.roser@uni-muenster.de}
3
Karlsruhe University of Applied Sciences, Germany
{andreas_peter.schmidt@hs-karlsruhe.de}
4
Center of Pediatric Palliative Care, LMU Munich, Germany
{tanja.stiehl@med.uni-muenchen.de}
Abstract. Ontologies as shared understanding of a domain of interest can sup-
port reflective processes in spiritual care. Such an ontology has been extracted
from an empirical analysis of historic patient records, which has identified a key
structure. This ontology is supposed to support the reflective learning process of
the palliative care team, which is interdisciplinary. A first prototype for a se-
mantically enhanced patient care documentation system has been developed
which embeds links to spiritual care into practice and helps to create awareness
among other disciplines about the systematic nature of spiritual care.
Keywords: ontologies, spiritual care, patient documentation, reflection
1 Introduction
Palliative care is a challenging multidisciplinary field where different perspectives
need to complement each other, including nurses, doctors, social workers but also the
frequently neglected aspect of spiritual care. Particularly this aspect has become more
complex as a consequence for an increasingly multi-cultural society with a myriad of
religious and spiritual ideas and beliefs.
Currently there is little awareness about spiritual aspects in palliative care in adja-
cent professions (such as physicians or nurses), and the perceived significance of this
part of palliative lags behind other professions. This is due to spiritual care not being
explicitly represented in boundary objects between the professions, most notably in
patient records, but also due to lack of evidence about the effectiveness of spiritual
interventions beyond anecdotal evidence.
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An analysis of their work and learning practices has revealed that due to the de-
manding nature of palliative care, reflective practice can already be identified on a
regular basis, particularly as regular, but informal group meetings, and as institution-
alized “supervision” in larger time intervals. This is an important element of coping
strategies. In these reflection sessions, narratives about patients (from varying time-
frames) are used to deepen the understanding about individual cases, but also to dis-
cover patterns across cases, to rationalise encounters of everyday practice. Team
members have developed a remarkably rich understanding of their work through these
practices.
To promote the understanding of spiritual care, building upon those reflective prac-
tices seems to be a very promising approach. Therefore the work presented in this
paper has concentrated on identifying and designing artefacts that can act as boundary
objects and support the reflective learning process and that can promote the maturing
of knowledge, especially through two activities: getting an overview about individual
cases and discovering patterns across cases.
The key idea of the approach is a spiritual care ontology, which represents a shared
understanding of the domain accessible to all involved professions. This ontology is
used to enhance patient records, represents a scaffold for reflection sessions, and cap-
tures evidence about relationship between patient situations and effective interven-
tions.
In the following sections, we present the ontology and how it was developed (sec-
tion 2) and the concept of how it is designed to support the (collective) learning pro-
cess (section 3) before we present a first prototype in section 4.
2 Spiritual Care Ontology
In order to come up with a meaningful and relevant ontology, an empirical ap-
proach has been chosen to develop the ontology (more details on the process are de-
scribed in Stiehl et al. (2011)). As a first step, a qualitative empirical analysis of 143
records of patients between 2004 and 2010 has been conducted. The concepts found
were iteratively integrated into an (informal) ontology using concept maps. This on-
tology was discussed with practitioners in workshops for relevance and comprehensi-
bility to align the empirical results with the needs in everyday practice.
The structure of the resulting ontology can be decomposed into the following key
elements:
• Facts about a patient or its social environment including relatives and
friends (expressed as direct properties). This includes demographic data, in-
formation about course of disease and care status, but also the cultural back-
ground (e.g., religion, migration background, or whether an individual has
been raised in rural or more urban areas).
• Observations that led to the identification of the facts (having a timestamp
and a possibly rich description of the observation.
• Spiritual concepts that interpret facts (and thus also observations). This in-
cludes a large set of concepts, such as eternity and finiteness, eternal love,
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love, guilt, purity, powerlessness vs. almightiness, or autonomy. The links to
observable behaviour or facts are context-dependent interpretations – different
individuals link the same “facts” to different concepts, depending on their
background and personal expectations. The spiritual concepts originate from
spiritual traditions, but are not limited to a single religion, which is particularly
important with the increasing diversity in religion and culture within society.
• Spiritual interventions are possible spiritual care activities. These can include
active spiritual support, meaningful silence, pastoral interviews, practical con-
sultancy, or rituals.
Figure 1: Small subset of the ontology for spiritual care
It is important that there is a connection between these key concepts. Observations
lead to facts about a patient (or their relatives). These can be linked to spiritual con-
cepts, such as concepts of death, purity, or forgiveness. These links show needs and
unresolved spiritual conflicts that are particularly important in palliative care process-
es. It should be noted that spiritual care is necessary for the patient, but also for the
relatives, and even for the palliative care team. Finally, the spiritual care interventions
link to spiritual concepts so that the identification of concepts can help to identify
appropriate interventions (and their contextualization). Such interventions could be
anointing in a catholic tradition, but also ritual cleansing in other cultures. But it could
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also identify topics for pastoral interviews. A small example of the ontology is shown
in figure 2 (the whole ontology consists of more than a hundred elements).
This ontology does not only allow for representing the knowledge about a patient
and their social environment in a systematic way; it also represents to a certain degree
the knowledge about appropriate spiritual care by providing the relevant concepts and
identifying the possible interventions, which is an analogy to diagnosis and treatment
in medical care.
3 Ontology & the Loops of Learning
The ontology is not only intended to act as a boundary object (together with the pa-
tient record) between the disciplines, but also as a bridge between operational and
reflective processes, which is common in reflective learning:
Figure 2: Levels of reflective learning and the role of the ontology
• On the operational level, carers document their activities as well as any ob-
servations on the state or other aspects deemed to be potentially relevant. This
usually takes place in a chronological way. Palliative care processes, however,
often extend over long periods of time (it also has to be taken into account that
not only the patient, but also relatives are to be cared for). The key idea is that
by annotating these incrementally collected notes with concepts from the on-
tology, a system can tie together distant observations about (possibly) the same
aspect. Also the ontology can guide towards possibly neglected aspects.
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• This forms then the basis for reflection about individual cases. Reflection is
already institutionalized as regular meetings. The ontology can help as a struc-
ture to have a systematic look at aspects that might be relevant for spiritual
care. It is important to note that these observations are typically made by the
various disciplines and need to be put together to have a reasonably complete
overview. The structure of the ontology can show gaps of information and its
use promotes awareness and understanding of relevant spiritual care aspects.
• On a longer timescale, multiple cases can be analysed to enhance the body of
evidence about effectiveness of spiritual care interventions in certain contexts.
Patterns can be discovered, such as differences in age with respect to dealing
with the prospect of dying (such as asking why). Such patterns can be then
used to further enhance the ontology and can feed into targeted research activi-
ties.
4 The System
A first prototype for a novel patient documentation system that is guided by the on-
tology has been developed in a participatory design approach. The resulting system is
based on a flexible backend implemented in Java ontop of Sesame RDF store and
Lucene for fulltext search. The front-end is has been implemented for Windows Tab-
lets and laptops in C# using the Windows Presentation Framework. The front-end is
designed to support offline operation so that the application does not depend on net-
work coverage at all times.
Figure 3: Screenshot showing an observation annotated with concepts from the ontology
(tabs at the bottom)
The prototype allows for entering notes about patients in a chronological way. In a
simple interface, the user can assign concepts from the ontology to the note. Only a
small part of the ontology is static (in the sense that it can only be changed by an ad-
ministrator); apart from that, users can extend the concepts in the ontology if they find
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that something relevant is missing (or rename concepts introduced by others, e.g.,
after a discussion in a meeting). This supports the gradual maturing of the ontology,
not only as part of the reflective sessions, but also as part of everyday practice by
capturing aspects that are not yet covered by the ontology.
5 Outlook
While spiritual care is often belittled as lacking evidence of its effectiveness com-
pared to other disciplines in palliative care, the development of the ontology has al-
ready shown that spiritual care follows a systematic approach. This systematic ap-
proach is made visible through the general structure of the ontology that has been
derived from historic patient records: observations/facts, spiritual concepts as inter-
pretations, and spiritual care interventions. Workshops with physicians, social work-
ers, and carers have shown that the ontology can act as a boundary object between the
disciplines and can create awareness about spiritual care and its relevance for holistic
care.
A first prototype has been built that demonstrates a novel approach to care docu-
mentations where observations can be associated with spiritual care concepts in a
lightweight way. This opens the possibility for enhancing the reflection on the indi-
vidual patient (that already takes place) with a structured representation about indi-
vidual cases (e.g., to more easily discover gaps), and for developing spiritual care
knowledge further (by analysing across cases and collecting the experiences).
We are aiming at trialling the prototype and gaining additional evidence about how
such an ontology can enhance both practice and associated learning processes.
Acknowledgements. This work is supported by the European Commission under the FP7
project LAYERS (no. 318209), http://www.learning-layers.eu. We wish to thank the student
teams at Karlsruhe University of Applied Sciences for their effort to create the first prototype.
They were part of the International Business Solutions Project in the Business Information
Systems program, which has received a teaching award from the Baden-Württemberg Stiftung
supporting its further internationalization.
References
Stiehl, Tanja, Führer, Monika, Roser, Traugott, Kunzmann, Christine, Schmidt, Andreas
(2011). Describing spiritual care within pediatric palliative care. An ontology-based method
for qualitative research In: 12th Congress of the European Association for Palliative Care
2011, Portugal, 2011
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