Certain life events, such as falling seriously ill, have so much
impact that these disrupt our life story. Because of the connection
between our life story and identity, such events can lead to a
“crisis of meaning” and evoke existential questions. In
religious studies, these crises of meaning are called
“experiences of contingency”: experiences that make us
aware of our vulnerability and finitude and confront us with the
randomness of life.
Although several findings suggest that adverse life events negatively impact people’s “quality of life”, some people find remarkably positive ways to relate to such events, leading to a better quality of life than would be expected.
This dissertation is about experiences of contingency caused by disruptive life events, and the ways people make meaning of such events and integrate them into their life narratives, influencing their quality of life. It describes the results of theoretical, qualitative and quantitative research, combining perspectives from both humanities and medical
In Chapter 1, the background, aims and research questions of
this dissertation are presented. Next, the status quaestionis is
described: the research that has previously been done on the subject
of this study, both in empirical and practical religious studies and
in the social sciences. Finally, the theoretical model
“Narrative meaning making and integration of life
events” is presented, followed by the development and structure of the Reconstruction of Life Events questionnaire (RE-LIFE) that was based on this theoretical model (see Appendix 1 for the questionnaire).
In Chapter 2, the results of the qualitative study into
experiences of contingency of
advanced cancer patients are presented. In a development and validation phase, 23 and 45 in-depth interviews we analyzed, respectively. This resulted in four modes of relating to contingency, indicating increasing narrative integration: “denying”, “acknowledging”, “accepting”, and “receiving”.
In Chapter 3, the psychometric properties of the RE-LIFE Questionnaire are presented. The RE-LIFE was tested in a large-scale study on quality of life among cardiac patients following revascularization. This chapter reports on its scale structure, the internal consistency and reliability of the scales and the convergent validity of the two key scales “experience of contingency” and “narrative integration”.
In Chapter 4, the results are presented of a mediation analysis that assessed the relationships between the concepts of our theoretical model underlying the RE-LIFE Questionnaire. Two models with variables possibly mediating the influence of “experience of contingency” on “acknowledging” and “quality of life” were assessed using regression-based serial multiple mediation analysis.
In Chapter 5, a literature review is presented of the effects of meaning making interventions (often referred to as “spiritual” interventions) using a narrative approach. A systematic search was conducted for randomized controlled trials comparing such interventions with standard care, for its effect on the quality of life or subjective wellbeing of advanced cancer patients.
In Chapter 6, influences of response shifts (“shifts of meaning”) and dispositions (stable characteristics of patients) on patient-reported outcomes such as quality of life are discussed. In addition, possible unintended consequences of these influences on medical decision-making in individual patient care and policy making are mapped. Examples of these consequences are provided, and analyzed from a medical ethics perspective.
In Chapter 7, the preceding chapters are summarized and an overview is given of the research questions, answers and directions for future research. In the subsequent general discussion, the added value of this study is evaluated and a few overarching topics are discussed such as “contingency competence” of counselors, the question whether all people are “narrative beings”, the possible relationship between response shift and life goals, and the possibility of a narrative conceptualization of quality of life.
Iris Hartog (1983) works as a researcher at the Center of Expertise
Palliative Care, Leiden
University Medical Center, as a teacher in medical ethics at the Department of Medical
Ethics, Philosophy and History, Erasmus Medical Center Rotterdam, and as an ethicist
for the Regional Euthanasia Review Committees. She conducted her doctoral research
at the chair of Empirical and Practical Religious Studies, Radboud University, in collaboration with the Department of Medical Psychology, Amsterdam UMC.