Repeated use of rich pictures to explore changes in subjective experiences over time of patients with advanced cancer.

BACKGROUND: The combination of verbal and visual tools may help unravel the experiences of advanced cancer patients. However, most previous studies have focused on a specific symptom, at only one moment in time. We recently found that a specific visual tool, originating from systems thinking, that is, rich pictures (RPs), could provide a more comprehensive view of the experiences of patients with advanced cancer. AIMS: To examine whether the repeated use of RPs can make changes in subjective experiences of patients living with advanced cancer visible over time. METHODS AND RESULTS: We performed a prospective study with a generic qualitative approach that was mostly informed by the process of grounded theory. We invited patients to make an RP twice, at the start of the study, and again after 2 months. Both RP drawing sessions were directly followed by a semi-structured interview. Patients with all types of solid tumors, above the age of 18, and with a diagnosis of advanced, incurable cancer, were eligible. Eighteen patients participated and 15 patients were able to draw an RP twice. In eight RP-sets, considerable differences between the first and second RP were noticeable. Two patterns were distinguished: (1) a change (decline or improvement) in physical health (five patients), and/or (2) a change in the way patients related to cancer (three patients). CONCLUSION: RPs are a valuable qualitative research method that can be used to explore the experiences of patients with advanced cancer, not only at a single point in time but also over time.

Living with advanced cancer: Rich Pictures as a means for health care providers to explore the experiences of advanced cancer patients.

BACKGROUND: To provide holistic care to patients with advanced cancer, health care professionals need to gain insight in patients' experiences across the different domains of health. However, describing such complex experiences verbally may be difficult for patients. The use of a visual tool, such as Rich Pictures (RPs) could be helpful. We explore the use of RPs to gain insight in the experiences of patients with advanced cancer. METHODS: Eighteen patients with advanced cancer were asked to draw a RP expressing how they experienced living with cancer, followed by a semi-structured interview. Qualitative content analysis, including the examination of all elements in the drawings and their interrelationships, was used to analyze the RPs, which was further informed by the interviews. RESULTS: The RPs clearly showed what was most important to an individual patient and made relations between elements visible at a glance. Themes identified included: medical aspects, the experience of loss, feelings related to loss, support from others and meaningful activities, and integration of cancer in one's life. The added value of RPs lies in the ability to represent these themes in one single snapshot. CONCLUSIONS: RPs allow for a complementary view on the experiences of advanced cancer patients, as they show and relate different aspects of patients' lives. A RP can provide health care professionals a visual summary of the experiences of a patient. For patients, telling their story to health care professionals might be facilitated when using RPs.

Toward a Fully Fledged Integration of Spiritual Care and Medical Care.

In this article, we aimed to set out current problems that hinder a fully fledged integration of spiritual and medical care, which address these obstacles. We discuss the following five statements: 1) spiritual care requires a clear and inclusive definition of spirituality; 2) empirical evidence for spiritual care interventions should be improved; 3) understanding patients' experiences of contingency is paramount to deliver effective spiritual care; 4) attention to spiritual needs of patients is a task for every health care practitioner; 5) courses on spirituality and spiritual care should be mandatory in the medical curriculum. Current problems might be overcome by speaking each other's language, which is crucial in interdisciplinary research and in good interdisciplinary collaboration. Using a clear and inclusive definition of spirituality and substantiating spiritual care using medical standards of evidence-based practice is a way to speak each other's language and to increase mutual understanding. Furthermore, including spirituality in the medical curriculum would raise awareness of medical practitioners for their task of attending to patients' spiritual needs and, subsequently, to better and more appropriate referral for spiritual care.

Relating to the Experience of Contingency in Patients With Advanced Cancer: An Interview Study in U.S. Patients.

CONTEXT: Being diagnosed with incurable cancer can be a life-changing experience, evoking different spiritual questions and needs. Confronting a serious life-threatening event occurs not only often unexpected but also can disrupt a person's self-image and ideals of their personhood. This confrontation makes it difficult for people to integrate it into their personal life story-otherwise referred to as an experience of contingency. OBJECTIVES: Different modes of relating to the contingent life event of having cancer have been studied in a Dutch patient population. Here we present an interview study in an U.S. population with advanced cancer patients. METHODS: We included eight American patients with advanced cancer from the George Washington University Cancer Center. All patients were interviewed twice discussing their life events and life goals using a semistructured interview model. All interviews were transcribed and analyzed focusing on how patients described the way they related to the experience of having advanced cancer. The constant comparative method with a directed content analysis approach was used to code the themes in the interviews. RESULTS: The analyses show that the four modes of relating to contingency that we found in the Dutch study population can also be found in an American advanced cancer patient population. Differences were found in the extended way American patients described the fourth mode of "receiving." CONCLUSION: This study ensures a broader and deeper understanding of relating to the experience of contingency in having incurable cancer, which is crucial in developing accurate spiritual care in the palliative phase of patients.

Images of God and attitudes towards death in relation to spiritual wellbeing: an exploratory side study of the EORTC QLQ-SWB32 validation study in palliative cancer patients.

BACKGROUND: When patients are facing the ends of their lives, spiritual concerns often become more important. It is argued that effective, integrated palliative care should include addressing patients' spiritual wellbeing. In 2002 the EORTC Quality of Life Group began an international study to develop an spiritual wellbeing measure for palliative patients (SWB). Spiritual wellbeing is a complex construct, which comprises multiple contributory components. While conducting the EORTC SWB validation study with Dutch palliative cancer patients we also conducted an exploratory side study to examine the relationship between their spiritual wellbeing, images of God, and attitudes towards death. METHODS: Patients with incurable cancer who were able to understand Dutch and were well enough to participate, completed the provisional SWB measure and two scales assessing "Images of God" and "attitudes towards death and afterlife". Linear stepwise regression analysis was conducted to assess the relation between SWB and other factors. RESULTS: Fifty two Dutch patients, 28 females and 24 males, participated. The whole SWB measure validation identified four scoring scales: Existential (EX), Relationship with Self (RS), Relationships with Others (RO), Relationship with Something Greater (RSG) and Relationship with God (RG, for believers only). Adherence to an image of an Unknowable God and a worse WHO performance status were negatively associated with the EX scale. The image of an Unknowable God was also found to be negatively associated with the RS scale. Higher education correlated positively with the RO scale. Adherence to a Personal or Non-Personal Image of God was not found to be positively influencing any of the domains of SWB. CONCLUSIONS: For our participants, an Unknowable Image of God had a negative relationship with their SWB. Furthermore, specific images of God (Personal or Non Personal) are not associated with domains of SWB. Together, these findings suggest that spiritual wellbeing surpasses traditional religious views. The development of a new language which more naturally expresses different images of a higher being amongst patients in western late-modern societies may further aid our understanding and subsequently lead to an improvement in patients' spiritual wellbeing.

Modes of relating to contingency: An exploration of experiences in advanced cancer patients.

OBJECTIVE: Throughout their lives, people are confronted with unexpected life events, which can be difficult to incorporate into their life narratives. Such a confrontation can result in an experience of contingency. Different ways of relating to contingency have been described by Wuchterl: denying, acknowledging, and "encounter with the Other." In the present article, we aim to trace these theoretical distinctions in real-life experiences of patients. METHOD: We analyzed 45 interviews using the constant comparative method with a directed content analysis approach in the Atlas.ti coding program. The interviews originated from a randomized controlled trial evaluating an assisted reflection on life events and ultimate life goals. Seven spiritual counselors from six hospitals in the Netherlands conducted the interviews from July of 2014 to March of 2016. All 45 patients had advanced cancer. RESULTS: We found four different modes into which relating to contingency can be classified: denying, acknowledging, accepting, and receiving. With denying, patients did not mention any impact of the life event on their lives. In acknowledging, the impact was recognized and a start was made to incorporate the event into their life. In accepting, patients went through a process of reinterpretation of the event. In receiving, patients talked about receiving insights from their illness and living a more conscious life. SIGNIFICANCE OF RESULTS: Our study is the first to investigate the different ways of relating to contingency in clinical practice. The defined modes will improve our understanding of the various ways in which cancer patients relate to their disease, allowing caregivers to better target and shape individual care.

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.

OBJECTIVE: The aim of this study was to examine the effect of spiritual interventions on quality of life of cancer patients. METHODS: We conducted our search on June 6, 2014 in Medline, PsycINFO, Embase, and PubMed. All clinical trials were included that compared standard care with a spiritual intervention that addressed existential themes using a narrative approach. Study quality was evaluated by the Cochrane Risk of Bias Tool. RESULTS: A total of 4972 studies were identified, of which 14 clinical trials (2050 patients) met the inclusion criteria, and 12 trials (1878 patients) were included in the meta-analysis. The overall risk of bias was high. When combined, all studies showed a moderate effect (d) 0.50 (95% CI = 0.20-0.79) 0-2 weeks after the intervention on overall quality of life in favor of the spiritual interventions. Meta-analysis at 3-6 months after the intervention showed a small insignificant effect (0.14, 95% CI = -0.08 to 0.35). Subgroup analysis including only the western studies showed a small effect of 0.17 (95% CI = 0.05-0.29). Including only studies that met the allocation concealment criteria showed an insignificant effect of 0.14 (95% CI = -0.05 to 0.33). CONCLUSIONS: Directly after the intervention, spiritual interventions had a moderate beneficial effect in terms of improving quality of life of cancer patients compared with that of a control group. No evidence was found that the interventions maintained this effect up to 3-6 months after the intervention. Further research is needed to understand how spiritual interventions could contribute to a long-term effect of increasing or maintaining quality of life.

The life in sight application study (LISA): design of a randomized 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.

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 randomized 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-application for a PC or tablet. To examine whether this assisted reflection improves quality of life we will conduct a randomized trial. Patients with advanced cancer not amenable to curative treatment options will be randomized to either the intervention or the control group. The intervention group will have two consultations with a spiritual counsellor 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 randomization all patients fill out questionnaires regarding quality of life, spiritual wellbeing, empowerment, 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 randomized 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 incorporated in guidelines on spiritual care. TRIAL REGISTRATION: The study is registered at ClinicalTrials.gov: NCT01830075.