UvA-DARE is a service provided by the library of the University of Amsterdam (https://dare.uva.nl)
UvA-DARE (Digital Academic Repository)
Out of the blue
Experiences of contingency in advanced cancer patients
Kruizinga, R.
Publication date
2017
Document Version
Final published version
License
Other
Link to publication
Citation for published version (APA):
Kruizinga, R. (2017). Out of the blue: Experiences of contingency in advanced cancer
patients.
General rights
It is not permitted to download or to forward/distribute the text or part of it without the consent of the author(s) and/or copyright holder(s), other than for strictly personal, individual use, unless the work is under an open content license (like Creative Commons).
Disclaimer/Complaints regulations
If you believe that digital publication of certain material infringes any of your rights or (privacy) interests, please let the Library know, stating your reasons. In case of a legitimate complaint, the Library will make the material inaccessible and/or remove it from the website. Please Ask the Library: https://uba.uva.nl/en/contact, or a letter to: Library of the University of Amsterdam, Secretariat, Singel 425, 1012 WP Amsterdam, The Netherlands. You will be contacted as soon as possible.
Uitnodiging
Voor het bijwonen van
de openbare verdediging
van mijn proefschrift:
Donderdag 7 december
om 12:00 uur
Agnietenkapel Oudezijds Voorburgwal 231
te Amsterdam
Na afloop van de promotieplechtig-heid bent u van harte uitgenodigd
voor de receptie ter plaatse Paranimfen: Iris Hartog i.d.hartog@amc.uva.nl 0643039405 Marianne Snijdewind m.c.snijdewind@amc.uva.nl 0648971186 Renske Kruizinga r.kruizinga@amc.uva.nl
Out of the blue
experienc
es
of c
on
tingency
in advanc
ed
canc
er
patien
ts
Rensk
e
Kruizing
a
Throughout their lives, people are
confronted with unexpected life events,
which can have a profound impact on
their lives and can be difficult to
incorporate into their life narratives.
Such a confrontation can be called an
experience of contingency.
The aim of this thesis is to describe
experiences of contingency in advanced
cancer patients, qualiatative as well as
quantatative. Furthermore, this thesis
provides practical guidelines for placing
spiritual care in a multidisciplinary care
setting.
ISBN: 978-94-6299-569-7
experiences of contingency in advanced cancer patientsOut of the blue
Experiences of contingency in advanced cancer patients
Renske Kruizinga
Out of the blue
Out of the blue
Out of the blue
experiences of contingency
in advanced cancer patients
Out of the blue
experiences of contingency in advanced cancer patients PhD Thesis, Academic Medical Center, University of Amsterdam
ISBN: 978-94-6299-569-7
Cover illustration: © Kevin Carden, Dreamstime.com Printing: Ridderprint BV, the Netherlands Lay-out: Renske Kruizinga
This research was financially supported by KWF, the Dutch Cancer Society/Alpe du’HuZes, Janssen Pharmaceutical Companies, an anonymous donor (all chapters), the René Vogels Stichting (chapter 7).
Publication of this thesis was financially supported by: Stichting Sormani Fonds.
Copyright © 2017 R. Kruizinga, Amsterdam, the Netherlands. No parts of this thesis may be reproduced without prior permission from the author.
Out of the blue
experiences of contingency
in advanced cancer patients
ACADEMISCH PROEFSCHRIFT ter verkrijging van de graad van doctor
aan de Universiteit van Amsterdam op gezag van de Rector Magnificus
prof. dr. ir. K.I.J. Maex
ten overstaan van een door het College voor Promoties ingestelde commissie in het openbaar te verdedigen in de Agnietenkapel
op donderdag 7 december 2017, te 12.00 uur
door Renske Kruizinga geboren te Terneuzen
Promotiecommissie:
Promotoren: Prof. dr. H.W.M. van Laarhoven Universiteit van Amsterdam Prof. dr. J.B.A.M. Schilderman Radboud Universiteit Nijmegen Copromotor: Dr. M. Scherer-Rath Radboud Universiteit Nijmegen
Overige leden: Dr. J. Dezutter
Prof. dr. J.C.J.M. de Haes Prof. dr. A.J. Pols Prof. M.N. Walton Prof. dr. D.L. Willems Prof. E.J. van Wolde
Katholieke Universiteit Leuven AMC-Universiteit van Amsterdam AMC-Universiteit van Amsterdam Protestantse Theologische Universiteit AMC-Universiteit van Amsterdam Radboud Universiteit Nijmegen Faculteit: Faculteit der Geneeskunde
Au moment même où tout est perdu, tout est possible [At the very moment when everything is lost, everything is possible]
Table of Contents
9 21 35 51 63 77 93 107 121 134 138 140 142 146 General introduction and outline of the thesisDesign of a randomised controlled trial to assess the role of an assisted structured reflection on quality of life of cancer patients The effect of spiritual interventions on quality of life of cancer patients: a systematic review and meta-analysis
Factors of spiritual well-being: an exploratory side study of the EORTC QLQ-SWB32 validation study in palliative cancer patients Experiences of spiritual counsellors: professional identity at stake a phenomenological analysis of spiritual counsellors’ experiences Relating to Contingency I: an exploration of experiences of contin-gency in Dutch advanced cancer patients
Relating to Contingency II: an exploration of experiences of contin-gency in North-American advanced cancer patients
Evaluation of an assisted structured reflection in advanced cancer patients: outcomes of a randomised controlled trial
English summary and general discussion: towards a fully-fledged integration of medical and spiritual care
Nederlandse samenvatting Acknowledgements / Dankwoord About the author / Over de auteur PhD Portfolio Contributing authors Chapter 1 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7 Chapter 8 Chapter 9 Appendix
G
eneral introduction
General Introduction
General introduction
“It just comes out of nowhere” (female, 51, breast cancer). “This was a real shock to me, it was completely out of the blue” (male, 74, bone cancer).
When patients describe the moment they received the diagnosis of incurable cancer, they usually emphasize the unexpectedness of the event and its impact on their life as a whole. It often evokes existential questions like ‘Why me, why this, why now?’ and requires an adaptation of one’s life story. These experiences can be called experiences of contingency.
Experiences of contingency
Contingency means that everything – including one’s own life – could have been different, and according to one’s plans and expectations could have developed differently [1-3]. Every day people are confronted with experiences of contingency, which can be either positive or negative. The negative experiences, however, affect people most profoundly. These can differ in type – illness, loss, accident… – and their impact may depend on personal char-acteristics and attitudes and on social situations or support [1, 3]. Contingency is mostly experienced when an event is profound, when it undermines personal life goals and when it cannot be integrated naturally into one’s own life [4]. A diagnosis of incurable cancer is often an experience of contingency. The double negative of the term contingency (not necessary, not impossible) contains two opposing experiences. On the one hand there is the unfore-seen, referring to the accidental, random, unexpected and futile. On the other it refers to a field of creativity: it provides a place to act and make decisions [2, 5].
While in traditional societies individual life stories were embedded in binding structures, values and norms, in our late modern society people’s identities are no longer clearly defined by these basic structures [6, 7]. Nowadays, people have to create their own reaction and interpretation in accordance with their life view. According to Luhmann, dan-gerous situations are no longer – as they were in older forms of society – regarded as results of nature, god or destiny, but as the result of decisions [8]. So the concept of contingency makes people aware of the increased number of options for their choices and actions, and even more so to the possible consequences these individual options may have [9]. Contin-gency, therefore, enables people to create a meaningful relationship with the situation they are faced with in their own context – with “meaningful” implying acting in a way that shows a natural connection to the past and includes desires, wishes and needs for the future [10, 11].
The creation of an interpretation framework requires a creative process of narra-tive reconstruction [12]. Experiences of contingency create a possibility for the individual to reflect and create meaning. This is where the notion of spirituality comes in, by attributing meaning to something that cannot naturally be understood. Herein, contingency is directly associated with the concept of spirituality through the possibility whereby people can cre-ate their own interpretation. Spirituality may therefore be the opportunity for people to attribute meaning, thus helping them to reflect on experiences of contingency by using a narrative reconstruction of the situation which can be shaped and constructed in order to integrate the event into their lives [4,7].
Spirituality
One of the patients participating in a validation study on the measurement of spiritual well-be-ing, replied to me, “What is spiritualism anyway, something vague with believing in aliens
and stuff?” This reaction illustrates how the term ‘spirituality’ can be vague and
misinterpret-ed, particularly in a Dutch context where it used to have a different connotation. Spirituality used to be understood
as a smaller, specific part of religion, reserved for religious people who had mystical spiritual experiences [13]. Over the years, spirituality has shifted away from this particular connection to faith and religion to become a broader term including everything that transcends our tangible world. People who describe them-selves as being secular can also have spiritual experiences, and the term ‘secular spiritual-ity’ has even appeared [14]. A simplified rep-resentation of the
tradi-tional and modern understandings of spirituality is shown in figure 1.
As a result of this shift, there is now a need for a more inclusive definition of spirit-uality, encompassing both the religious and the secular linguistic fields to describe a dimen-sion of human experience [15]. Sheldrake describes three aspects of spirituality which are key to our modern understanding of the term. In the first place, spirituality is an holistic notion, understood as the integrating factor in life. Secondly, it is concerned with a quest for the “sacred”, which can be broadly interpreted (nature, arts, god, cosmos). Lastly, spirit-uality is often understood as a quest for meaning which derives from a decline in traditional religious views, especially in Western Europe [13]. In this thesis we use the definition of spirituality agreed upon in a 2009 Consensus Conference: "Spirituality is the aspect of hu-manity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred" [16]. In this understanding of spirituality, secular and religious elements are combined and the emphasis is on meaning, purpose and being connected. When performing research in the domain of spiritual care it is important to use an inclusive and broad definition of spirituality, combining the religious and secular linguistic fields, so as to ensure that spiritual care is provided to a broad patient population who may benefit from it. This is especially true for Western Europe, where fewer people characterize themselves as being religious [17].
Figure 1. Traditional and modern understanding of spirituality
Figure 2. Traditional and Modern understanding of Spirituality
Traditional understanding Modern understanding
Secular Secular Religion Religion Spirituality Spirituality
General Introduction
Spiritual care
When time is limited by an incurable disease, moments of reflection and reprioritising can be of ultimate value. Spiritual care can create time and space and can empower patients to reflect on what really matters. Two patients interviewed for this thesis perfectly illustrated the core of what spiritual care can do: “It was a very good experience, especially drawing
my life line. That was very enlightening to me, as was formulating my expectations of the future. To think about what is really important to me, what I should be investing my energy in” (male, 35, brain cancer). “What specifically lingered were the life goals that I formulated for the future. I’ve thought a lot about it and it keeps coming back. Do I dare to look this far into the future? Well, sometimes I do and then those are the reference points you strive for”
(female, 64, oesophageal cancer). Evidence of its positive effects has led over the years to more and more acceptance of spiritual care as an important part of health care. In 2002 the WHO included spiritual care as an aspect of palliative care, because it can offer patients a sense of comfort, meaning, control and personal growth [18]. Despite the fact that spiritual needs are now part of the WHO definition of palliative care, however, spiritual issues are still poorly addressed and underdeveloped [19, 20]. Physicians tend to underrate or ignore spirituality and patients indicate that their spiritual needs are neglected in standard clinical environments [20-23]. Moreover, there are still concerns about the concepts of quality of life and response shift in relation to spirituality.
The problems with the role of spiritual care in a clinical setting can be understood from the history of medicine and spiritual care. What we today call hospitals descend from the monastic tradition whereby nuns, for the most part, took care of the ill and the church sent missionaries to remote areas to help people with their spiritual and medical needs [24, 25]. During the ‘pillarization’ of Dutch society, the churches and the state became more in-dependent of one another and, consequently, spirituality was relegated to the ecclesiastical domain [26]. From 1970s, however, as secularization increased, spiritual care shifted from the churches back to hospitals. Over several decades, spiritual care professionals working in healthcare have moved from being emissaries of local religious communities to members of the healthcare team
[27-29]. Nowadays, spiritual care is no longer strictly a domain of the church but is gradually becoming an essential part of healthcare once again [24, 30-32]; see figure 2.
This new situation en¬tails all kind of questions and challenges: who is respon-sible for the soul, the spiritual counsellor or the doctor? And what are the interdisciplinary opportunities and risks? [33]. Another shift can be noticed in the profession of spiritual care, which has to do with the training of spiritual care pro-fessionals. In the America of
Figure 2. Simplified Scheme of Transitions in Spiritual Care
Figure 1: Simplified Scheme of the Transitions in Spiritual Care
Monasteries/guest houses (medical care is part of spiritual care)
State (medical care) Church
(spiritual care)
Integrated health care (spiritual care is part of medical care)
Until the ‘70
’70-‘90
the 1930s there were two different views on how to shape pastoral care and how to train the student, known as the New England and the New York group. The New England group was convinced that the use of underlying concepts and methodological research helps to improve pastoral care. The New York group focused on experiences of the counsellors and designed peer-reviewed and supervision training. The latter was strongly influenced by the work of Sigmund Freud and William James and their interests in personal competence, rath-er than work content. The ideas of the New York school wrath-ere adopted by Dutch theologians who designed the training for spiritual care professionals in the Netherlands and started Clinical Pastoral Education (CPE) [34]. From the 1970s, the question ‘Who must I be to be of help?’ became more central in the education of pastoral carers. The focus on their personal, professional and spiritual background implied that methods and underlying concepts had shifted to the background. The personal competence of ‘being present’ and being able to listen carefully without an agenda was central in many curricula [35]. Nowadays, there is an increasing interest in evidence-based research and in the use of different methods in spiritual care, although personal competences also remain part of the curriculum. In this thesis we aim to contribute to the scientific foundation of the field of spiritual care through empirical evidence-based research and the theory of experiences of contingency.
Advanced cancer patients
Amongst those people who are expected to benefit from spiritual care those who are con-fronted with the finitude of life. For many patients, receiving the diagnosis of cancer is a direct confrontation with the possibility of death. Cancer is a leading cause of death, with an estimated 8.2 million people worldwide dying from it each year – a number which is expected to increase because of the ageing population and the adoption of behaviours and lifestyle factors known to cause cancer [18]. Patients with cancer have to cope with loss of control over their lives, with anxiety or depression and with the fear of recurrence [36]. Knowing that their time is limited can bring an urgent need to deal with existential ques-tions, and therefore engender a need for spiritual care. This thesis will focus on advanced cancer patients, not limited to a particular type of tumour.
Rationale of the study
Studies have shown that advanced cancer patients benefit from spiritual interventions in terms of quality of life and overall well-being [37-39]. Various scientific studies and health-care protocols, especially in the United States, have contributed to the idea that spiritual care is of ultimate value to advanced cancer patients. However, studies in the field of spirit-uality still have important issues to resolve regarding validity, conceptualization and scien-tific accountability. Since spirituality is a broad, multifaceted term and different definitions of spirituality and spiritual care are used, the operationalisation of the term is difficult. Also, there is no consensus as to who should provide spiritual care to patients. When looking at spirituality studies, we see a wide range of spiritual care providers, from doctors, nurses, spiritual counsellors and psychologists to less clearly defined professions such as spiritual healers [40]. The main concern, however, is that most researchers in this field do not use a thorough, grounded theory on which to base their studies. Consequently, a large number of studies may be considered as ‘spiritual care studies’ but all have different underlying theories, ideas and assumptions, which in many cases are not explicitly mentioned. We might speak of a gap in the field of spirituality research, illustrated by a lack of knowledge
General Introduction
healthcare setting [41, 42].
Considering the current knowledge gaps in spirituality research, in this thesis we aim to contribute to the scientific foundation and evidence of spiritual care research in a healthcare setting. The studies we designed use a narrative approach, because we believe this is the most suitable one when dealing with the existential questions patients are con-fronted with. Advanced cancer patients often use narratives to construct their own mean-ingful framework. A narrative creates coherence by linking past, present, future and person-al goperson-als into an intelligible whole [2, 43]. In confrontation with experiences of contingency, an extra narrative effort is required to construct a new meaningful framework of interpre-tation [5]. In order to get a grip on other studies that used a narrative approach in providing spiritual care to cancer patients and to evaluate the effect of those studies on patients’ qual-ity of life, we set up a systematic review and meta-analysis. In this study we systematically address the question of whether spiritual interventions with a narrative approach improve quality of life of cancer patients.
Subsequently, we designed an intervention to address the spiritual concerns of cancer patients using a narrative approach and the assumptions of the contingency theory. The intervention is designed to be assisted by spiritual counsellors working in a hospital set-ting, as they are experts in the field of the existential needs of patients facing the finitude of life. We will evaluate the effects of the intervention by conducting a randomised controlled trial, in which one group receives the intervention and the other receives care as usual. By conducting evidence-based intervention studies, the professionalisation of spiritual care will further be improved and as a result of this study spiritual counsellors may become more structurally involved in the care of cancer patients.
Furthermore, the relationship between quality of life, spirituality and spiritual well-being needs more investigation. Studies have shown a direct relationship between quality of life and spiritual well-being, although the nature of this relationship is still rather fuzzy. It is not clear which factors influence it, making it harder to shape and target spiritual care interventions. Some previous studies in advanced cancer patients have shown that im-ages of God and attitudes towards death are directly or indirectly associated with quality of life, depression and hopelessness [44, 45]. Some other studies found a relationship between specific concepts of religiousness and spiritual well-being [46-48]. We will therefore con-duct an exploratory study on possible influencing factors, such as images of God, attitudes towards death and specific religious concepts, and how they affect the spiritual well-being and quality of life of cancer patients. The identification of such factors is an important step towards the development of interventions to improve spiritual well-being and to provide insights into this complex concept.
Since the spiritual care provider is the main person carrying out the intervention we have designed, assessment of his/her experiences with the intervention is of crucial importance for its further improvement and implementation. In many hospitals, spiritual counsellors are the designated professionals to provide care when patients indicate that they have spiritual needs. The professional identity of a spiritual counsellor is in general identified mainly by the ability to listen carefully, without an agenda, rather than by the use of more structural approaches. With the aim of professionalizing and substantiating spiritual care, it is important to have more evidence-based studies which include spiritual counsel-lors who apply a certain structure in their work. To understand the experiences of spiritual counsellors working with a new structured method in offering spiritual care to palliative patients in relation to a multidisciplinary healthcare team, we will carry out an interpretive
analysis of in-depth interviews. Understanding the difficulties that spiritual counsellors ex-perience in using more structured approaches will help by shaping intervention studies and incorporating such counsellors in a way that is in line with their professional identity.
Many studies have been conducted in the field of coping, focusing on how cancer patients deal with their condition as an unexpected life event, but these have concentrated primarily on functional aspects. In order to understand how people actually evaluate these unexpected life events in relation to their own world view, however, a more religious-phil-osophical approach is desirable. A functionalistic approach focuses only on the way can-cer patients display how they are dealing with the event, whereas a religious-philosophical approach allows us to unravel their underlying beliefs and so provides an insight into how they interpret the situation and attribute meaning to it. We believe that focusing on how patients relate to a situation that is an existential given and looking into their interpretative framework is a valuable perspective in understanding the depth of their experiences. Opting for this religious-philosophical approach also allows us to better shape and target spiritual care. Starting with the experiences of contingency, we studied the content of the interviews from our randomised controlled trial with advanced cancer patients in the Netherlands. In addition, we conducted a small interview study with American patients.
Research questions
The central questions we answer in order to provide insight into experiences of contingency in advanced cancer patients and to improve the clinical practice of spiritual care are as follows.
The research questions are answered by using a mixed-method study design. A qualitative approach was chosen when analysing the interview data, but a quantitative approach was used when assessing factors that influence spiritual well-being, the effects of spiritual in-terventions and the effects of our randomised controlled trial. Both quantitative and quali-How can we assess the effect of a structured reflection on life events and ultimate life goals of cancer patients to improve their quality of life and spiritual well-being? (chapter 2)
Do spiritual intervention studies that use a narrative approach improve the quality of life of cancer patients? (chapter 3)
Is there a relationship between spiritual well-being and specific images of God and attitudes towards death and afterlife? (chapter 4)
How do spiritual care professionals experience and give meaning to their experiences in learning to work with a structured model in offering spiritual care? (chapter 5) How do advanced cancer patients relate to the experience of contingency in having incurable cancer in a Dutch patient population (chapter 6) and in a North American patient population. (chapter 7)
What is the effect of a structured reflection on life events and ultimate life goals of cancer patients in improving quality of life and spiritual well-being? (chapter 8) 1. 2. 3. 4. 5. 6.
General Introduction
the most of different research methods. The contingency theory was used as a theoretical foundation to this thesis. Details about the specific method used in the various studies is provided in each chapter.
Outline
In outline, this thesis follows the four basic questions of journalism: how, where, who and what [49]? Beginning with the first question, in chapter 2 we explain how we are going to evaluate the role of a semi-structured interview model in providing spiritual care to cancer patients. The design of the randomised controlled trial is set out, the underlying theories are described and the operationalisation is explained. The inclusion of a study protocol increas-es the transparency of the rincreas-esearch, enabling the reader to compare what was originally intended with what was actually done.
The third and fourth chapters answer the question of where our research can be placed in relation to other research fields. First, we present a meta-analysis of all spiritual intervention studies with a narrative approach that have been conducted in advanced can-cer patients to measure quality of life. The outcomes of this study helps to gain an overview of what other studies have done and what their findings are, so that we can relate our study to this wider field of research. Second, the field of spirituality and spiritual well-being is examined in relation to images of God and attitudes towards death. Because the field of spiritual well-being is relatively new, it is important to understand what factors can possibly be influential in unravelling the concept of spiritual well-being. Other studies have shown that there is a connection between quality of life and images of God and attitudes towards death in advanced cancer patients in the Netherlands.
Chapter five answers the question of ‘who’ provides spiritual care. A phenomeno-logical analysis of spiritual counsellors’ experiences in using a structured model is conducted to deepen our understanding of their professional roles. We asked the spiritual counsel-lors participating in our randomised controlled trial how they experienced working with the structured model and the e-application. This aspect of the study deepens our understanding of the professional roles and identities of spiritual counsellors in an inter-professional team.
The question at the heart of our study, and that most frequently asked by peo-ple around us, was: what is the role of a structured interview model on the quality of life and spiritual well-being of cancer patients? We can now finally answer this question, over three chapters. The qualitative analysis of the structured interviews is presented in chapter six. We describe how patients relate to the experience of contingency in having incurable cancer. Then, in chapter seven, we look beyond the Dutch borders to find out if our model of describing these experiences of contingency is also applicable to an American cancer pa-tient population. The quantitative results of our study are described in chapter eight. Here we outline the different results of the intervention study and interpret them in relation to other studies.
Finally, we end with a summary and general discussion reflecting on spiritual care in a healthcare setting. We describe current problems in the field and ways to achieve a fully-fledged integration of spiritual and medical care.
References
1. Scherer-Rath M, van den Brand JAM, van Straten C et al. Experience of contingency and congruence of interpre-tation of life-events in clinical psychiatric settings: a qualitative pilot study. J Empirical Theology 2012;25:127–152. 2. Zirfas J. Kontingenz und Tragik: Eine moderne Figur und ihre ästhetischen Konsequenzen. In: Liebau E, Zirfas J eds. Drama der Moderne. Kontingenz und Tragik im Zeitalter der Freiheit. Bielefeld: Transcript Verlag; 2010. 3. Makropoulos M. Kontingenz. Aspekte einer theoretischen Semantik der Moderne. European Journal of Sociology 2004;45(3):369-399.
4. Dalferth IU, Stoellger P. Religion zwischen Selbstverständlichkeit, Unselbstverständlichkeit und Unverständlich-keit. Hermeneutik der Religion 2007:1-21.
5. Schwemmer O. Das Neue und das Andere: zum Verhältnis von Kontingenz und Kreativität. In: Der Mensch - ein kreatives Wesen? Kunst - Technik - Innovation 2008:183–204.
6. Giddens A. Modernity and Self-identity: Self and Society in the Late Modern Age. Stanford: Stanford University Press; 1991.
7. Bauman Z. Liquid times: Living in an age of uncertainty. New York City: John Wiley & Sons; 2013. 8. Luhmann N. Risk: a sociological theory. Transl. Barrett R. Berlin and New York: Walter de Gruyter 1993;12. 9. Joas H. Morality in an Age of Contingency. Acta sociologica 2004;47(4): 392-399.
10. Scherer-Rath M, Van der Ven JA, Felling JA. Images of death as perspectives in a life crisis. J Empirical Theology 2001;14:5–26.
11. Scherer-Rath M. Pastorale zorg: kritisch pastoraat voor het leven van alledag. In: Sterkens C, van der Meer J eds.
Kerk aan de stadsrand. 2004;87–106.
12. Scherer-Rath M. Narrative reconstruction as creative contingency. In: Ganzevoort RR, de Haardt M. Scherer-Ra-th M eds. Religious stories we live by. Narrative approaches in Scherer-Ra-theology and religious studies. Leiden: Brill; 2013. P. 131-142.
13. Sheldrake P. A brief history of spirituality. New York City: John Wiley & Sons; 2009.
14. Du Toit CW. Secular spirituality versus secular dualism: Towards postsecular holism as model for a natural the-ology. HTS Teologiese Studies/Theological Studies 2006;62(4):1251-1268.
15. Breitbart W. The spiritual domain of palliative care: Who should be “spiritual care professionals”? Palliat
Sup-port Care 2009;7(02):139-141.
16. Puchalski CM, Ferrell B, Virani R et al. Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference. J Palliat Med 2009;12:885-904.
17. Smith TW. Beliefs about God across time and countries. Chicago: NORC University of Chicago; 2012.
18. World Health Organization: The definition palliative care. http://www.who.int/cancer/palliative/definition/en/ (2002). Accessed 24 May 2016.
19. Nolan S, Saltmarsh P, Leget CJW. Spiritual care in palliative care: working towards an EAPC Task Force. European
Journal of Palliative Care 2011: 86-89.
20. Best M, Aldridge L, Butow P et al. Assessment of spiritual suffering in the cancer context: a systematic literature review. Palliat Support Care 2015;13(5):1335-1361.
21. Payne S, Haines R. The contribution of psychologists to specialist palliative care. Int J Palliat Nurs 2002;8(8):401– 406.
22. Williams FG, Kirkman-Liff B, Netting FE. Lessons learned across sites. In: Netting FE, Williams FG eds. Enhanced
primary care for elder people. Oxford: Taylor and Francis; 1999:219–234.
23. Post SG, Puchalski CM, Larson DB. Physicians and patient spirituality: professional boundaries, competency, and ethics. Ann Intern Med 2000;132(7):578-583.
24. Van de Geer J, Leget C. How spirituality is integrated systemwide in the Netherlands palliative care national programme. Progr Palliat Care 2012;20(2):98–105.
25. Doolaard J. Nieuw handboek geestelijke verzorging in zorginstellingen. Kampen: Kok; 2006.
26. Smeets W, Morice-Calkhoven T. From ministry towards spiritual competence. Changing perspectives in spiritual care in the Netherlands. J Empirical Theology 2014;27:103–129.
27. Handzo GF, Cobb M, Holmes C et al. Outcomes for professional health care chaplaincy: An international call to action. Journal of Health Care Chaplaincy 2014;20(2):43-53.
28. Otis-Green SF, Betty R. Professional Education in Psychosocial Oncology. In: Holland JC ed. Psycho-Oncology. Oxford: Oxford University Press; 2010. P. 610.
29. Sinclair S, Chochinov HM. The role of chaplains within oncology interdisciplinary teams. Current Opinion in
Supportive and Palliative Care 2012;6(2):259-268.
30. Sepúlveda C, Marlin A, Yoshida T et al. Palliative care: the World Health Organization’s global perspective. J Pain
General Introduction
31. De Swaan A. In care of the state: Health care, education, and welfare in Europe and the USA in the modern era. Oxford: Oxford University Press; 1988.
32. Frick E, Roser T, editors. Spiritualität und Medizin: gemeinsame Sorge für den kranken Menschen. Stuttgart: W. Kohlhammer Verlag; 2009.
33. Kohli C, Noth I. Palliative und Spiritual Care. Aktuelle Perspektiven in Medizin und Theologie. Zürich: Theologi-scher Verlag; 2014.
34. Van der Ven JA. Education for reflective ministry. Leuven: Peeters Publishers; 1998.
35. Baart A. The fragile power of listening. Practical Theology in South Africa 2003;18(3):136–156.
36. Dow KH, Ferrell BR, Leigh S et al. An evaluation of the quality of life among long-term survivors of breast cancer.
Breast Cancer Research and Treatment 1996;39(3):261-273.
37. Cohen SR, Mount BM, Tomas JJ et al. Existential well-being is an important determinant of quality of life: evi-dence from the McGill quality of life questionnaire. Cancer 1996;77(3):576–586.
38. Balboni TA, Vanderwerker LC, Block SD et al. Religiousness and spiritual support among advanced cancer pa-tients and associations with end-of-life treatment preferences and quality of life. J Clin Oncol 2007;25:555–560. 39. Balboni TA, Paulk ME, Balboni MJ et al. Provision of spiritual care to patients with advanced cancer: associations with medical care and quality of life near death. J Clin Oncol 2010;28(3): 445–452.
40. Jafari N, et al. Spiritual therapy to improve the spiritual well-being of Iranian women with breast cancer: a randomised controlled trial. Evid Based Complement Alternat Med 2013; 353262.
41. Kalish N. Evidence-based spiritual care: a literature review. Curr Opin Support Palliat Care 2012;6(2):242–246. 42. Henoch I, Danielson E. Existential concerns among patients with cancer and interventions to meet them: an integrative literature review. Psychooncology 2009;18(3):225–236.
43. Ricoeur P. Oneself as another. Chicago: University of Chicago Press; 1995.
44. Van Laarhoven HWM, Schilderman JBAM, Verhagen CA et al. Perspectives on death and an afterlife in relation to quality of life, depression, and hopelessness in cancer patients without evidence of disease and advanced cancer patients. J Pain Symptom Manage 2011;41(6):1048-1059.
45. Van Laarhoven HWM, Schilderman JBAM, Vissers KC et al. Images of god in relation to coping strategies of palliative cancer patients. J Pain Symptom Manage 2010;40(4):495-501.
46. Wong-McDonald A, Gorsuch RL. A multivariate theory of God concept, religious motivation, locus of control, coping, and spiritual well-being. J Psychol Theol 2004;32(4):318.
47. Fehring RJ, Miller JF, Shaw C. Spiritual well-being, religiosity, hope, depression, and other mood states in elderly people coping with cancer. Oncol Nurs Forum 1997:663-671.
48. Wink P, Dillon M. Religiousness, spirituality, and psychosocial functioning in late adulthood: findings from a longitudinal study. Psycholog Relig Spiritual 2008;1:102-115.
49. Spencer-Thomas O. Press release: getting the facts straight. http://www.owenspencer-thomas.com/journa-lism/media-tips/writing-a-press-release. (2012) Accessed 5 April 2017.
This chapter is based on:
Kruizinga R, Scherer-Rath M, Schilderman JBAM et al. The life in sight application study (LISA): design of a randomised controlled trial to assess the role of an assisted structured reflection on life events and ultimate life goals to improve quality of life of cancer patients. BMC Cancer 2013;13(1):360.
D
esign of a trial
Abstract
Background
It is widely recognized that spiritual care plays an important role in physical and psychosocial well-being of cancer patients, but there is little evidence based research on the effects of spiritual care. We will conduct a randomised controlled trial on spiritual care using a brief structured interview scheme supported by an e-application. The aim is to examine whether an assisted reflection on life events and ultimate life goals can improve quality of life of cancer patients.
Methods/Design
Based on the findings of our previous research, we have developed a brief interview model that allows spiritual counsellors to explore, explicate and discuss life events and ultimate life goals with cancer patients. To support the interview, we created an e-ap-plication for a PC or tablet. To examine whether this assisted reflection improves quality of life we will conduct a randomised trial. Patients with advanced cancer not amenable to curative treatment options will be randomised to either the intervention or the con-trol group. The intervention group will have two consultations with a spiritual coun-sellor using the interview scheme supported by the e-application. The control group will receive care as usual. At baseline and one and three months after randomisation all patients fill out questionnaires regarding quality of life, spiritual well-being, empow-erment, satisfaction with life, anxiety and depression and health care consumption.
Discussion
Having insight into one’s ultimate life goals may help integrating a life event such as cancer into one’s life story. This is the first randomised controlled trial to evaluate the role of an assisted structured reflection on ultimate life goals to improve patients’ quality of life and spiritual well being. The intervention is brief and based on concepts and skills that spiritual counsellors are familiar with, it can be easily implemented in routine patient care and incor-porated in guidelines on spiritual care.
Trial registration
Design of a Trial
Background
Spirituality is increasingly recognized as an important domain to include in the care for pa-tients with a life threatening illness [1-5]. In a recent Consensus Conference, spirituality has been defined as “the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred” [4]. “According to reports in the United States and Canada, 50%-90% of cancer patients view religion or spirituality as personally important [6-8]. Religion and spirituality can offer a source of comfort, meaning, control and personal growth to patients who are confronted with a life threatening disease” [9-11]. Spirituality may be especially relevant for patients’ well-being.
In a recent systematic review on the relationship between spirituality and well-be-ing in cancer patients, the majority of identified studies observed a positive association between spirituality and well-being [12]. Recommendations from the 2005 National Con-sensus Project on Quality Palliative Care called for increased efforts to understand patients’ existential needs and to conduct and evaluate interventions to address these concerns [4]. Nevertheless, appropriate, effective, and brief interventions to address spiritual concerns are still lacking. One of the key-elements in these spiritual concerns is the experience of contingency: the experience that something is neither a necessity, nor an impossibility, everything could have been different [13]. Contingency will be experienced when it is prob-lematic to incorporate an event into one’s story of life. The diagnosis of advanced cancer may be such an event. The aim of our study is to examine whether an assisted reflection on contingent life events and ultimate life goals can improve cancer patients’ quality of life.
The experience of contingency
Cancer patients are confronted with a diagnosis and subsequent treatment that may have a large impact on their life perspective [14, 15]. Their life lines are suddenly disrupted, which necessitates a reinterpretation of their lives. This experience is called experience of contin-gency [13]. Experiences of contincontin-gency prompt people to shape a meaningful relation to the situations they are confronted with. Meaningful implies: acting in such a way that it logically and plausibly connects to one’s actions in the past, as well as to desires, wishes and needs for the future [16,17].
In a traditional society, the contingency of action and choice was limited [14], but nowadays people have become individuals with their own personal, biographical story that they have to construct and justify by themselves [18, 19]. They increasingly feel obliged to shape their own framework of interpretation for situations they are confronted with. Shap-ing such a framework of interpretation can be facilitated by the construction of a narrative [20, 21]. A narrative configures separate events into an intelligible whole [21]. It creates a temporal coherence whereby a so-called plot links past, present and future to one another and to the personal goals that people pursue. In confrontation with a contingent situation an extra narrative effort is required to construct a new framework of interpretation which fits with one’s ultimate life goals [22].
Ultimate life goals
In the way people react to the experience of contingency and the stories people tell about their life events, we can decipher the underlying life goals [23]. Personal goals express what people find really important. They are the intrinsic source of human action [21, 24].
A distinction can be made between instrumental and ultimate life goals [25]. Instrumental goals refer directly to actions and the way actions are carried out, whereas more abstract goals provide information on the purpose or implications of actions [26]. Instrumental goals can be achieved in order to reach ultimate goals [27]. Unlike instrumental goals, ultimate life goals locate concrete situations in a person’s mental and behavioural framework that forms the core of self-identity [25]. They are irreplaceable in that they give meaning to our lives and without them our lives become meaningless [28].
However, in the course of one’s life, goals that give meaning may change. A recon-struction of the ultimate life goals in confrontation with contingency could assist patients to (re)access their own resources and come to terms with the unexpected aspects of life, ultimately improving their quality of life [29-31].
Methods/Design
This study primarily aims to answer the following question: does an assisted structured re-flection on life events and ultimate life goals of cancer patients improve quality of life? To evaluate the effect of the structured reflection we will conduct a multicenter two-armed randomised non-blinded controlled trial. Previous randomised studies on spiritual inter-ventions in cancer patients have included patients from hospices or palliative care units [32-35]. However, spirituality is not restricted to end of life [36]. Therefore, in this study we will include patients who have been confronted with advanced cancer, but still have a life expectancy of at least half a year. The following inclusion and exclusion criteria apply:
Eligible patients will be invited by their treating oncologists and asked to give written informed consent. A baseline assessment will take place in consenting patients, including an evaluation of quality of life and spiritual well-being. Within two weeks after the baseline assessments patients will be randomised between an intervention and a control group (care as usual), see figure 1. Two months and four months after randomisation, patients of both the intervention and the control group will complete questionnaires regarding quality of life, spiritual well being, empowerment and health care consumption. In the intervention group we will also conduct a telephone evaluation to examine the satisfaction with the intervention. Patients declining participation will be asked to answer a few questions by telephone, to explore whether participants and non-participants differ.
Inclusion criteria
1. Patients ≥ 18 years of age with advanced cancer not amenable to curative treatment.
2. Life expectancy ≥ 6 months.
Exclusion criteria
1. Karnofsky Performance Score < 60.
2. Insufficient command of the Dutch language to fill out Dutch questionnaires.
Design of a Trial
Intervention
We have developed a semi-structured interview model for the interpretation of contingent life events in life stories, based on literature on the experiences of contingency and the importance of ultimate life goals. In this interview we inquire into (a) the life events, (b) ulti-mate life goals, (c) the interpretation of contingent life events (d) reconstruction of life story. Since 2008 this interview model has been used in various populations, including mentally handicapped people, young people with problem behaviour, individuals > 30 years, highly qualified young people in their twenties, Zen meditation trainees, volunteers in hospices, cancer patients, primary school teachers, and asylum seekers [25]. The respondents were from a religious and non-religious background. In all populations, the interviews were eval-uated positively by most of the respondents. They did not experience the semi-structured nature of the interview as a drawback and frequently indicated that it was a very special experience to reconstruct their life stories in collaboration with an interviewer. In the exper-imental arm of our randomised study we will use this interview model for an assisted, struc-tured reflection on contingent life events and ultimate life goals, which will be supported by a newly developed e-application. The assisted reflection is carried out in two consultations with a spiritual counsellor. The counsellor analyses the first consultation in the interim and discusses this analysis with the patient during the second consultation, see table 1.
Consultation I
In the first consultation with the spiritual counsellor, the patients draw their lifelines (Figure 2). The patients choose from their life line the three or four most important events and discuss these events with the counsellor. Next the patients draw their future life line and define life goals. In this first consultation, the spiritual counsellors use the interview model with specified questions in a given order.
Table 1. Summary of the intervention Figure 1. Study Flow chart
The interview model requires a probing technique, which implies that the spiritual counsellor keeps asking questions to unravel aspects of ultimate life goals as well as differ-ent layers in the interpretation of life evdiffer-ents. The result of consultation I is a reconstruction of the patient’s life story and the reflection of the patients on this story.
Analysis of consultation I
The analysis of consultation I is performed by the spiritual counsellor and concerns three steps. First, using the e-application, the spiritual counsellor classifies the most important life events identified by the patient as active or passive and positive or negative. An active interpretation implies that the person views the event as an active effort in order to reach his/her own goals. A passive interpretation implies that the event happened to the person in a sense that something befalls you. A positive event means that the event foster’s you in your striving to achieve a goal. Negative implies that the event hinders you in your striving to achieve a goal. The positive and negative interpretations relate to three dimensions of human thought and action [25]. These three dimensions are: ‘here and now’, ‘whole life’ and ‘a higher reality’ (Figure 3).
Figure 2. Life line drawn by patients indicating highs and lows
Design of a Trial
Here and now implies that the event is situational; it has an impact on the person in the concrete situation. Whole life implies that the event is existential; it transcends the situational meaning and has an effect on the person’s whole existence in time and space. Higher reality implies that the event is transcendental; it transcends the situational and existential meaning and has an effect on the person and his whole view of life. Second, the life goals that the patient defined in the first consultation are being weighed. Three different dimensions are taken into account: pre-intentional, intentional and meta-intentional [37]. The different dimensions help distinguishing between instrumental and ultimate life goals. The pre-intentional dimension describes instrumental life goals and comprises simple in-tentional ad hoc decisions such as eating when you are hungry. The inin-tentional dimension describes more awareness for the good and evil in the environment. Finally, the meta-inten-tion stage is where people define very abstract possibilities to transcend the world they are living in [25]. This results in a distinction between direct goals, valuable goals and ultimate goals (Figure 4). In the third and last step of the analysis the coherence between life goals and life events is indicated by the. The result of this whole analysis is a framework for obser-vation and interpretation of contingent life events and ultimate life goals.
Consultation II
Using the analysis of Consultation I, the spiritual counsellor will summarize the results and present them to the patient in a transparent and organized way. The patient is thus aided during a one-hour session to reflect on his/her own framework for interpretation on a more profound level. Methodologically, this may be regarded as a member-check. However, at the same time the patient will be challenged to creatively respond to the results. The last screen on the e-application is built to be changed by the patients themselves. They discuss with the spiritual counsellor what kind of tension or coherence between life events and life goals can be identified (Figure 5). The patients are challenged to search for (in) coherence in their lives. This may aid patients accommodating their contingent life events [38].
Primary endpoints
Two primary endpoints are distinguished. First, general quality of life as measured with the general quality of life scale of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15 Palliative Care (EORTC QLQ-C15-PAL). The EO-RTC QLQ-C15-PAL is a shortened version of the EOEO-RTC QLQ-C30, which is one of the most rigorously studied and widely used health-related quality-of-life questionnaires in oncology research [39-42]. Second, spiritual well-being as measured by the subscale meaning/peace of the Functional Assessment of Chronic Illness Therapy - Spiritual well-being 12 (FACIT-Sp12). The FACIT-Sp-12 is a widely used measure and is not restricted to a particular religion and is valid and reliable [43]. The FACIT-sp-12 demonstrates good internal consistency re-liability and a significant relation with quality of life in a large, multi-ethnic sample [44,45].
Secondary endpoints
Specific aspects of quality of life, as measured with the physical functioning and role func-tioning, and symptom scales of the EORTC QLQ-C15-PAL and the Faith subscale of the FAC-IT-Sp-12 will be treated as secondary endpoints. Patient empowerment is becoming more and more important, both from health care professionals’ and from patients’ perspective [46]. Reconstructing a life story and also defining life goals and intention for the future can lead to a feeling of empowerment to undertake actions which are important. We will assess patients’ empowerment with a Dutch version of the Pearlin Mastery Scale developed by Pearlin en Schooler (1978) [47]. The Pearlin Mastery Scale measures the extent to which Figure 5. Identification of coherence and non-coherence between life events and life goals
Design of a Trial
It consists of a 7-item scale. In previous studies, the instrument yielded satisfactory psycho-metric properties [48,49]. Furthermore, as patients’ view on spirituality can change over time as a result of the intervention, we will measure spirituality by the Spiritual Attitude en Interests List (SAIL), developed by the Helen Dowling Institute in the Netherlands. The SAIL is a multidimensional questionnaire for studying spiritual experiences of religious and non-religious people with good internal consistency reliability [44].
Tertiary endpoints
Changes in patients’ perspective on satisfaction with life will be measured by the Diener Sat-isfaction with Life Scale [50]. Furthermore, as feelings of anxiety and depression may arise when patients realize the limited amount of time that is left to achieve life goals, feelings of anxiety and depression will be measured by the Hospital Anxiety and Depression Scale [51]. Also, patients’ health consumption is assessed according to a shortened and for this study adapted version of the Trimbos/iMTA questionnaire for Costs associated with Psychiatric Illness (TICP) [52]. Finally, we will explore patients’ satisfaction with the intervention by a telephone interview using a study-specific topic list.
Background variables
Demographic data, including data on religious/spiritual background, images of God and as-pects of religious salience, as well as medical data, including tumour type, time since diag-nosis and previous treatments, will be collected at baseline [53].
Sample size calculation
The primary aim of our study is to improve quality of life and spiritual well-being. We will conduct a mixed design measures ANOVA to detect differences between the control-group and the intervention-group over pre-, post- and follow-up measurement. To detect a small effect (effect size f = .10) with statistical power 80%, alpha 5%, and a correlation between repeated assessments of r = .63, we need a sample of 122 patients. With an expected drop out of 20%, we will include 153 patients.
Randomisation
Randomisation will be performed on-line via a secure internet facility in a 1:1 ratio by the TENALEA Clinical Trial Data Management System using randomly permuted blocks with maximum block size 4 within strata formed by nine spiritual counsellors. The researcher contacts the randomisation website after patients have signed informed consent. The re-searcher enters the patient into the randomisation program linked to the spiritual counsel-lor of the patients’ hospital. In case in a specific hospital more than one spiritual counselcounsel-lor is involved in the study a counsellor from that hospital is randomly allocated to the patient. Then the researcher receives the random treatment allocation (intervention versus control) for the patient.
Recruitment
Seven hospitals accepted the invitation to join the study. Participating hospitals are two academic hospitals: the Academic Medical Centre in Amsterdam, University Medical Centre Utrecht in Utrecht. One categorical hospital: Antoni van Leeuwenhoek Ziekenhuis, and four local hospitals: Onze Lieve Vrouwe Gasthuis in Amsterdam, Elkerliek Ziekenhuis in Helmond, Westfriesgasthuis in Hoorn, and Spaarne Gasthuis in Hoofddorp.
Ethical and legal considerations
The Medical Ethics Review Committee of the Academic Medical Centre Amsterdam con-firmed that the Medical Research Involving Human Subjects Act (WMO) does not apply to our study and therefore an official approval of this study by the committee was not re-quired. (Letter, June, 27th, 2012)
Discussion
This is the first randomised controlled trial to evaluate the role of an assisted structured re-flection on life events and ultimate life goals to improve patients’ quality of life and spiritual well-being. Insight into one’s ultimate life goals is expected to help patients to integrate a life event such as cancer into their lives. A prospective study in patients is needed to empirically examine whether insight into one’s ultimate life goals improves quality of life and spiritual well-being. Since the intervention is brief and based on concepts and skills that spiritual counsellors are familiar with, it can be easily implemented in usual patient care and incor-porated in guidelines on spiritual care [2].
Although we expect to find a positive outcome of our intervention on quality of life and spiritual well-being, we do realize that negative experiences may also be induced. For example, patients can become anxious or depressed when they bring life events from the past back into their memories [54,55]. We believe it is of utmost importance to assess the effects of our intervention therefore we will also measure for anxiety and depression. Health care can benefit from technical innovations [56]. In our study we will use an e-ap-plication to support the analyses of the spiritual counsellor in a visually attractive way. The e-application will help obtaining a clearer view of the consultations’ content. Afterwards when patients receive the second questionnaire they also receive a printed version of the counsellor’s analysis. This printed version gives patients the opportunity to continue reflect-ing on their lifelines, interpretations of life events, life goals and the coherence between this all. Additionally, family and friends can have a look at this summary and discuss the results together, which may be of further benefit to the patients and their families.
As a result of this study, spiritual counsellors may be become more structurally involved in the health care of cancer patients. Referral to spiritual counsellors is already ex-plicitly included in guidelines such as the NCCN guideline on distress [1]. However, in clinical practice only few spiritual counsellors are an integral part of the clinical team. We believe that evidence-based interventions on spiritual care will further improve the professionalisa-tion of spiritual counselling and structural incorporaprofessionalisa-tion into daily patient care.
Potential limitations of our study can be identified. The success of this study crit-ically depends on the skills of the spiritual counsellors participating in the trial. However, spiritual counsellors involved in the study will all be experienced in patient care and will be trained to work with the interview model and e-application. This study will be conducted as a multicentre study, involving academic as well as peripheral hospitals. Therefore, we expect the generalizability of our results to be high. Nevertheless, generalizability will be limited by the national context of the study. In conclusion, by the conduction of this randomised con-trolled trial we aim to show the effectiveness oft a brief intervention that addresses spiritual concerns of cancer patients to improve quality of life.
Design of a Trial
References
1. Holland JC, Bultz BD. The NCCN guideline for distress management: a case for making distress the sixth vital sign.
J Natl Compr Canc Netw 2007;5:3–7.
2. Oncoline: Guideline Spiritual Care. http://www.oncoline.nl/spiritual-care (2013). Accessed 20 January 2013. 3. McCue JD. The naturalness of dying. JAMA 1995;273:1039–1043.
4. Puchalski CM, Ferrell B, Virani R et al. Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference. J Palliat Med 2009;12:885–904.
5. World Health Organization: The definition palliative care. http://www.who.int/cancer/palliative/definition/en/ (2002). Accessed 20 January 2013.
6. True G, Phipps EJ, Braitman LE et al. Treatment preferences and advance care planning at end of life: the role of ethnicity and spiritual coping in cancer patients. Ann Behav Med 2005;30:174–179.
7. Gall TL. Relationship with God and the quality of life of prostate cancer survivors. Qual Life Res 2004;13:1357– 1368.
8. Balboni TA, Vanderwerker LC, Block SD et al. Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. J Clin Oncol 2007;25:555–560. 9. Van Laarhoven HWM, Schilderman JBAM, Vissers KC et al. Images of god in relation to coping strategies of palli-ative cancer patients. J Pain Symptom Manage 2010;40(4):495-501.
10. Pargament KI, Koenig HG, Perez LM. The many methods of religious coping: development and initial validation of the RCOPE. J Clin Psychol 2000;56:519–543.
11. Vachon ML. Meaning, spirituality, and wellness in cancer survivors. Semin Oncol Nurs 2008;24:218–225. 12. Visser A, Garssen B, Vingerhoets A. Spirituality and well-being in cancer patients: a review. Psychooncology 2010; 19:565–572.
13. Holzinger M. Kontingenz in der Gegenwartsgesellschaft: Dimensionen eines Leitbegriffs moderner Sozialtheorie. Transcript Verlag: Bielefeld; 2015.
14. Keupp HI, Ahbe T, Gmür W et al. Identitätskonstruktionen: Das Patchwork der Identitäten in der Spätmoderne. Hamburg: Rowohlt Taschenbuch Verlag; 1999.
15. Yang W, Staps T, Hijmans E. Existential crisis and the awareness of dying: the role of meaning and spirituality.
Omega (Westport) 2010;61:53–69.
16. Scherer-Rath M, Van der Ven JA, Felling JA. Images of death as perspectives in a life crisis. J Empirical Theology 2001;14:5–26.
17. Scherer-Rath M. Pastorale zorg: kritisch pastoraat voor het leven van alledag. In: Sterkens C, van der Meer J eds.
Kerk aan de stadsrand. 2004;87–106.
18. Ganzevoort RR, Bouwer J: Life story methods and care for the elderly. An empirical research project in practical theology, in Ziebertz HG, Schweitzer F eds. Dreaming the land, Theologies of resistance and hope. Münster, LIT Verlag, 2007, pp 140-151
19. Zirfas J. Kontingenz und Tragik: Eine moderne Figur und ihre ästhetischen Konsequenzen. In: Liebau E, Zirfas J eds. Drama der Moderne. Kontingenz und Tragik im Zeitalter der Freiheit. Bielefeld: Transcript Verlag; 2010. 20. Ricoeur P. Zufall und Vernunft in der Geschichte. Tübingen: Konkursbuch Verlag; 1986.
21. Straub J. Telling stories, Making History: Toward a Narrative Psychology of the Historical Construction of Me-aning. In: Narration, identity, and historical consciousness. Oxford/New York: Berghahn Books; 2005. P. 44-98. 22. Schwemmer O. Das Neue und das Andere: zum Verhältnis von Kontingenz und Kreativität. In: Der Mensch - ein kreatives Wesen? Kunst - Technik - Innovation 2008:183–204.
23. Deci EL, Ryan RM. The ‘what’ and ‘why’ of goal pursuits: human needs and the self-determination of behavior.
Psychological Inquiry 2000;11:227–268.
24. Van den Brand JAM, Hermans CAM, Scherer-Rath M et al. An instrument for reconstructing interpretation of life stories. In: Ganzevoort RR, de Haardt M. Scherer-Rath M eds. Religious stories we live by. Narrative approaches in
theology and religious studies. Leiden: Brill; 2013. p. 169-182.
25. Scherer-Rath M, van den Brand JAM, van Straten C et al. Experience of contingency and congruence of interpre-tation of life-events in clinical psychiatric settings: a qualitative pilot study. J Empirical Theology 2012;25:127–152. 26. Emmons RA. Abstract versus concrete goals: personal striving level, physical illness, and psychological well-being. J Pers Soc Psychol 1992;62:292–300.
27. Frijda NH. The laws of emotion. London: Erlbaum; 2007.
28. Tillich P. Christianity and the encounter of the world religions. New York: Columbia University Press; 1963. 29. Dijkstra J. Gespreksvoering bij geestelijke verzorging. Een methodische ondersteuning om betekenisvolle
ge-spreksvoering te voeren. Nelissen: Soest; 2007.
30. Van Schrojenstein Lantman R. Levensverhalen in het ziekteproces. Over geestelijke verzorging en
31. Morgenthaler C. Lehrbuch Praktische Theologie: Seelsorge. Gütersloh: Gütersloher Verlagshaus; 2009. 32. Steinhauser KE, Alexander SC, Byock IR et al. Do preparation and life completion discussions improve functio-ning and quality of life in seriously ill patients? Pilot randomised control trial. J Palliat Med 2008;11:1234–1240. 33. Steinhauser KE, Alexander SC, Byock IR et al. Seriously ill patients’ discussions of preparation and life completi-on: an intervention to assist with transition at the end of life. Palliat Support Care 2009;7:393–404.
34. Ando M, Morita T, Akechi T, et al. Efficacy of short-term life-review interviews on the spiritual well-being of terminally ill cancer patients. J Pain Symptom Manage 2010;39:993–1002.
35. Ando M, Morita T, Okamoto T, et al. One-week Short-Term Life Review interview can improve spiritual well-being of terminally ill cancer patients. Psychooncology 2008;17:885–890.
36. Surbone A, Baider L. The spiritual dimension of cancer care. Crit Rev Oncol Hematol 2010;73:228–235. 37. Strasser S. Das Gemüt: Grundgedanken zu einer phänomenologischen Philosophie und Theorie des
menschli-chen Gefühlslebens. Freiburg: Herder; 1956.
38. Reker GT. Manual of Life Attitude Profile-Revisited. Student Psychologists Press: Petersborough; 1992. 39. Shin DW, Choi JE, Miyashita M et al: Cross-cultural application of the Korean version of the European Organi-zation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative Care. J Pain Symptom
Manage 2011;41:478–484.
40. Kaasa S, Loge JH. Quality of life in palliative care: principles and practice. Palliat Med 2003;17:11–20. 41. Jordhoy MS, Fayers P, Loge JH, et al. Quality of life in palliative cancer care: results from a cluster randomised trial. J Clin Oncol 2001;19:3884-3894.
42. Stromgren AS, Goldschmidt D, Groenvold M et al. Self-assessment in cancer patients referred to palliative care: a study of feasibility and symptom epidemiology. Cancer 2002;94:512–520.
43. Brady MJ, Peterman AH, Fitchett G, et al. A case for including spirituality in quality of life measurement in on-cology. Psychooncology 1999;8:417–428.
44. de Jager Meezenbroek E, Garssen B, van den Berg M et al. Measuring spirituality as a universal human expe-rience: development of the Spiritual Attitude and Involvement List (SAIL). J Psychosoc Oncol 2012;30:141–167. 45. Peterman AH, Fitchett G, Brady MJ et al. Measuring spiritual well-being in people with cancer: the functional assessment of chronic illness therapy–Spiritual Well-being Scale (FACIT-Sp). Ann Behav Med 2002;24:49–58. 46. Kvåle K, Bondevik M. What is important for patient centred care? A qualitative study about the perceptions of patients with cancer. Scandinavian J Caring Sci 2008;22:582–589.
47. Pearlin LI, Schooler C. The structure of coping. J Health Soc Behav 1978;19:2–21.
48. Pearlin LI, Lieberman MA, Menaghan EG et al. The stress process. J Health Soc Behav 1981;22:337–356. 49. Turner RJ, Noh S. Physical disability and depression: a longitudinal analysis. J Health Soc Behav 1988;29:23–37. 50. Diener E, Emmons RA, Larsen RJ et al. The satisfaction with life scale. J Pers Assess 1985;49:71–75.
51. Spinhoven P, Ormel J, Sloekers PPA et al. A validation study of the Hospital Anxiety and Depression Scale (HADS) in different groups of Dutch subjects. Psychol Med 1997;27:363–370.
52. van Roijen L, van Straten A, Tiemens B et al. Manual Trimbos/iMTA questionnaire for costs associated with
psychiatric illness (TIC-P). Rotterdam: Institute for Medical Technology Assessment; 2002.
53. Zaccaria F. Participation and Beliefs in Popular Religiosity: An Empirical-Theological Exploration Among Italian
Catholics. Leiden: Brill; 2010.
54. Higginson S, Mansell W. What is the mechanism of psychological change? A qualitative analysis of six individuals who experienced personal change and recovery. Psychol Psychother 2008;81:309–328.
55. Lloyd-Williams M, Cobb M, O’Connor C, Dunn L et al. A pilot randomised controlled trial to reduce suffering and emotional distress in patients with advanced cancer. J Affect Disord 2013;148.1: 141-145.
This chapter is based on:
Kruizinga R, Hartog ID, Jacobs M et al. The effect of spiritual interventions addressing existential themes using a narrative approach on quality of life of cancer patients: A systematic review and meta-analysis. Psychooncology 2016;25(3):253–265.
