Effect of methodically writing the spiritual autobiography on personal life orientation and resilience for people treated for cancer.

A Randomized controlled trial study.

Introduction

A cancer diagnosis and the associated intensive medical treatment profoundly confront people with the limits of their existence and death. This will often invoke existential questions. On the one hand, these are questions about identity, such as "Who am I ',' what can I do',' what do I want? On the other hand, these are questions about meaning: 'what is the meaning, purpose and direction in my life" and "what is of ultimate concern to me"? This existential questioning can have such impact, that it results in a crisis of meaning and meaning making. Research shows that seventy percent of people with cancer in the Netherlands say they are struggling with the above questions and many report that they need professional assistance with this.
An estimated 400,000 people in the Netherlands live with a cancer diagnosis and this number will increase further. As a result, the number of outpatient, ambulatory patients will grow strongly. Simultaneously, evidence-based outpatient interventions aimed at existential questions, are not yet available.
To meet the growing demand for outpatient spiritual care, the Pastoral and Spiritual Care Department at VU University Medical Center developed the intervention 'Methodically writing the Spiritual Autobiography", based on existing methodology and clinical experience. It is the aim of the intervention that reflecting on one’s own life experiences, will result in an articulation and transformation of one’s life-orientation and resilience. Life-orientation refers to a reflected or non-reflected personal vision on what is of ultimate concern to a person and how he or she gives concrete form to this in their life. Resilience refers to the ability to tap into internal and external sources to deal with setbacks and threats. The idea is that awareness and / or transformation of personal life-orientation will strengthen resilience, and enable to fit cancer into one’s life and shape one’s future.

Objectives

1. Determining the effectiveness of the intervention "methodically writing spiritual autobiography" (immediately, 10 weeks and 9 months after the intervention) in terms of personal life orientation and resilience (primary outcomes) and psychological well-being, coping and quality of life (secondary outcome measurements).

2. Gain insight into the way in which the intervention contributes to the degree of reflection, shaping and appropriating one’s personal life orientation and its effect on resilience.

3. Gain insight into predictive factors for success of the intervention

Method

Randomized, controlled trial with two study arms (n = 63 per arm). The experimental group receives 'care as usual’ and the intervention ‘methodically writing the spiritual autobiography’. The control group will receive during the study period (six months) only "care as usual” and will be put on a waiting list. After the study period, the intervention will still be offered to them.
The effect of the intervention is measured and explained in quantitative and qualitative research. In the quantitative part psychological questionnaires are composed, using several reliable and valid instruments. The qualitative part consist of a content analysis of the texts that participants have written, and of semi-structured interviews with 20 randomly invited participants in the experimental group nine months after the intervention.

The research objectives are examined in the following ways:

1. The primary outcome measures are the effect on personal life-orientation (Spiritual Attitude and Interest List and Northwestern Ego Integrity Scale) and the effect on resilience (Ryff conceptual well-being scale). Secondary outcome measures are the effect on the psychological well-being (Hospital Anxiety and Depression Scale), adjustment to cancer (Mental Adjustment to Cancer Scale) and quality of life (EORTC QLQ-C30).
2. The relationship between the intervention, resilience and personal life orientation is examined by content analysis of the texts written during the intervention and verbata of semi-structured interviews. Texts and interviews are analyzed for content, categorized and rated using a coding system based on scientific analysis of autobiographical material as developed by McAdams (1999)

3. To understand the predictors of success of the intervention, a regression analysis will be performed with socio-demographic, medical and psychological factors as independent variables.

Results
Not available yet

Project duration
3,5 year

Permission METC
Not applicable.

Funding
Adessium Foundation; Roomsch Catholijck Armen en Ouderen Kantoor; VU University Medical Center (VUmc)

Staff
PhD student 
L. Post, MA, Theologian, PhD student, dpt. of Pastoral and Spiritual Care, VUmc
Project leaders 
J.A. Delver, MSc.Theologian, Spiritual Counselor, dpt. of Pastoral and Spiritual Care, VUmc

Prof I.M. Verdonck-de Leeuw, PhD, Psychologist, Speech and Language Therapist, Linguïst, dpt. Otolaryngology-Head&Neck Surgery, VUmc.
Prof R.R. Ganzevoort, PhD  Professor of Practical Theology, VU Faculty of Theology
Project members

Prof J. Bonjer, PhD MD, Head of Surgery department, VUmc
Dr. R. Paul, PhD MD  Lung sSurgeon, dpt. of Surgery, VUmc
L. ter Velde, PhD MD  Oncological Surgeon, dpt. of Surgery, VUmc;
Prof W.R. Gerritsen, PhD MD  Medical Oncologist, dpt. of Medical Oncology, VUmc
Prof P. Huijgens, PhD MD, Internist-Hematologist, dpt. of Hematology, VUmc

Questions?
For questions, please contact:
Lenneke Post, MA, Theologian
E-mail: h.post@vumc.nl
Phone: + 31( 0)20-4443475