Exploring resonance theory and uncontrollability during co-creative art making: A qualitative study among cancer patients.

PURPOSE: Co-creation, characterised by artists and patients creating a joint work of art, may support patients with the integration of life events, such as living with cancer, into their life story. In the process of co-creation, resonance relationships between patients, artists and material may evolve that support such integration. Using the framework of resonance theory, we aim to investigate if and how patients move through the three phases of resonance during a process of co-creation and explore the role of uncontrollability in this process. METHODS: Ten patients who received cancer treatment with palliative intent completed co-creation processes, which were audio recorded. These recordings were imported in Atlas-Ti and analysed by applying content analysis. We searched for the three phases of resonance, Being affected, touched and moved; Self-efficacy and responding; Adaptive transformation. We additionally searched for signs of uncontrollability. RESULTS: Patients used 4-8 sessions (median 5 sessions) with a duration 90-240 min per session (median duration 120 min). We found that patients move through the three phases of resonance during co-creation processes. Uncontrollability both presents a challenge and an invitation to integrate experiences of contingency into one's life narrative. Patients express self-recognition and the experience of contingency in their work of art. CONCLUSIONS: Integration of experiences of contingency into a life narrative can be supported by the process of co-creation of art, which invites patients to relate to their illness, their environment and themselves. The phases of resonance in combination with uncontrollability as a continuously present factor, provide a means to both study and support the integration of experiences of contingency into the life narrative.

The expression of ultimate life goals in co-creative art processes with palliative cancer patients.

BACKGROUND: Co-creation, characterized by artists and patients creating a joint work of art, may support patients with the integration of disruptive life events into their life story, such as living with cancer. Focusing on experiences of contingency and life goals could support this process. The research questions are: (1) 'how are patient's ultimate life goals and experiences of contingency expressed in the work of art as created in a process of co-creation?'; (2) 'how do the four phases of integration of experiences of contingency unfold during co-creation?' METHODS: Ten patients who were in a palliative stage of cancer treatment completed co-creation processes. Audio recordings of these co-creation processes were imported in Atlas-Ti and analysed by applying directed content analysis. We searched for life goals and experiences of contingency in the four phases of co-creation; Art communications, Element compilation, Consolidation, Reflection. RESULTS: Patients used 4-8 sessions (median 5 sessions) with a duration of 90-240 min each (median duration 120 min). All patients expressed their experience of contingency and their ultimate life goals within the four phases of co-creation and in their work of art. A case description is presented illustrating the co-creation process. CONCLUSIONS: During co-creation, patients move through four phases in which experiences of contingency and ultimate life goals can be made explicit through art making and can be expressed in the work of art, supporting integration of experiences of contingency into one's life narrative.

Co-creative art processes with cancer patients from the artists' perspective: a qualitative study exploring resonance theory.

PURPOSE: Co-creation, characterised by artists and patients creating a joint work of art, may support patients with the integration of life events into their life story, such as living with cancer. In the process of co-creation, resonance relationships between patients, artists and material may evolve that support integration. We aim to investigate if and if so, how resonance relationships occur from the perspective of the artist. METHODS: We used the first 10 audio recordings of supervision sessions between eight artists and their two supervisors on ongoing co-creation processes with cancer patients. By conducting a qualitative template analysis in AtlasTi, we searched for the presence of resonance, as defined by its four main characteristics, Being affected, touched and moved; Self-efficacy and responding; Moments of uncontrollability; and Adaptive transformation. In addition, two case descriptions are presented. RESULTS: We found resonance relationships to be present in the studied co-creation processes where moments of uncontrollability can lead to a next step in the process of co-creation and as such form an important factor within co-creation. CONCLUSIONS: The current study suggests focus on elements of resonance relationships within co-creation, specifically practising with uncontrollability while working with art, could strengthen interventions targeting integration of life events in advanced cancer patients.

Co-creative art processes with patients: A theoretical framework and qualitative study among artists.

A cancer diagnosis may be experienced as a contingent life event. Co-creation-in which artists together with patients create a work of art reflecting on aspects of the patients' life story-may be used to support patients to integrate such a contingent life event into their life story. We conducted a qualitative study in which we interviewed 10 professional artists to explore if co-creative art processes could facilitate integration of experiences of contingency in patients. Template analyses were performed in AtlasTi. We identified co-creation as a specific form of support to the process of integration of experiences of contingency. In the formation of a new life narrative, patients transcend the boundaries of their previous life narrative by changing their perspective. Self-transcendence forms a pivotal point in co-creation, which may be helpful for patients to integrate experiences of contingency into their life narratives.

This is what life with cancer looks like: exploring experiences of adolescent and young adults with cancer using two visual approaches.

INTRODUCTION: Talking about illness experience can be challenging for adolescents and young adults (AYAs) with cancer. Visual tools, in addition to spoken language, might make this easier, such as rich pictures and photovoice. We aimed to obtain a comprehensive view of the cancer experience of AYAs by using rich pictures and photovoice. METHODS: AYAs (18-35 years old) who had any type of cancer, or were in remission from cancer, were eligible. AYAs drew rich pictures about their experience of living with cancer and explained these during subsequent interviews. Some of the AYAs also participated in photovoice and spent two days with a photographer to make photos about their illness experience. Rich pictures and photos were first analyzed separately, using open coding, after which the identified themes were compared. RESULTS: Twelve AYAs made rich pictures (RPs), of whom seven also participated in photovoice. The two most predominant themes emerging from the data were struggles related to the future and defining one's identity. The AYAs expressed concerns for the future related to relationships, education, and employment. Relating to defining one's identity, many AYAs expressed that the cancer had a negative impact on their body- and self-image. The main themes were visible in the RPs as well as in the photovoice; however, subtle differences in sub-themes were found. CONCLUSIONS: We found that cancer has an effect on many aspects of AYAs' lives. Further research on how the identified themes play a role in the lives of AYAs with cancer is needed.

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.

Response shift after coronary revascularization.

PURPOSE: The aims of this study were to investigate (1) the extent to which response shift occurs among patients with coronary artery disease (CAD) after coronary revascularization, (2) whether the assessment of changes in health-related quality of life (HRQoL), controlled for response shift, yield more valid estimates of changes in HRQoL, as indicated by stronger associations with criterion measures of change, than without controlling for response shift, and (3) if occurrences of response shift are related to patient characteristics. METHODS: Patients with CAD completed the SF-36 and the Seattle Angina Questionnaire (SAQ7) at baseline and 3 months after coronary revascularization. Sociodemographic, clinical and psychosocial variables were measured with the patient version of the New York Heart Association-class, Subjective Significance Questionnaire, Reconstruction of Life Events Questionnaire (RE-LIFE), and HEXACO personality inventory. Oort's Structural Equation Modeling (SEM) approach was used to investigate response shift. RESULTS: 191 patient completed questionnaires at baseline and at 3 months after treatment. The SF-36 showed recalibration and reprioritization response shift and the SAQ7 reconceptualization response shift. Controlling for these response shift effects did not result in more valid estimates of change. One significant association was found between reprioritization response shift and complete integration of having CAD into their life story, as indicated by the RE-LIFE. CONCLUSION: Results indicate response shift in HRQoL following coronary revascularization. While we did not find an impact of response shift on the estimates of change, the SEM approach provides a more comprehensive insight into the different types of change in HRQoL following coronary revascularization.

Narrative recognition and identification: a qualitative pilot study into reading literary texts with advanced cancer patients.

PURPOSE: Patients with advanced cancer can experience their disease as a contingent life event. The sudden interruption of their life stories can obscure life goals and disrupt meaning making. In the context of the research project "In search of stories," we aim to investigate the reading and discussion of selected stories which present ways of dealing with a contingent life event. In addition, we examine the use of a newly developed guide for reading these exemplary texts together with advanced cancer patients. METHODS: This qualitative study describes the experiences of five patients with advanced cancer who participated in a guided reading and discussion about selected literary texts. The intervention consisted of reading a selected story, after which each patient was interviewed, using the reading guide as a conversation template. The interviews were then thematically analyzed for their conceptual content using a template analysis. RESULTS: All five conversations showed some form of recognition in reaction to the chosen text, which led to personal identification of experiences of contingency, such as loss of life goals, impending death, or feelings of uncertainty. Besides the important role of identification, revealed by the responses to the questions in the reading guide, the discussion of the text helped them articulate their own experience and sources of meaning. Diverse worldviews came to the fore and concepts of meaning such as fate, life goals, quality of life, and death. CONCLUSIONS: First experiences with our newly developed reading guide designed to support a structured reading of stories containing experiences of contingency suggest that it may help patients to express their own experiences of contingency and to reflect on these experiences. IMPLICATIONS FOR CANCER SURVIVORS: The intervention tested in this study may contribute to supportive care for survivors with advanced cancer, but further research is needed to evaluate its effect on quality of life.

Ecological momentary assessment versus retrospective assessment for measuring change in health-related quality of life following cardiac intervention.

BACKGROUND: Measuring change in health-related quality-of-life (HRQoL) is important to assess the impact of disease and/or treatment. Ecological momentary assessment (EMA) comprises the repeated assessment of momentary HRQoL in the natural environment and is particularly suited to capture daily experiences. Our objective was to study whether change in momentary measures or retrospective measures of HRQoL are more strongly associated with criterion measures of change in HRQoL. Twenty-six coronary artery disease patients completed momentary and retrospective HRQoL questionnaires before and after coronary revascularization. Momentary HRQoL was assessed with 14 items which were repeatedly presented 9 times a day for 7 consecutive days. Each momentary assessment period was followed by a retrospective HRQoL questionnaire that used the same items, albeit phrased in the past tense and employing a one-week time frame. Criterion measures of change comprised the New York Heart Association functioning classification system and the Subjective Significance Change Questionnaire. Regression analysis was used to determine the association of momentary and retrospective HRQoL change with the criterion measures of change. RESULTS: Change according to momentary HRQoL items was more strongly associated with criterion measures of change than change according to retrospective HRQoL items. Five of 14 momentary items were significantly associated with the criterion measures. One association was found for the retrospective items, however, in the unexpected direction. CONCLUSION: Momentary HRQoL measures better captured change in HRQoL after cardiac intervention than retrospective HRQoL measures. EMA is a valuable expansion of the armamentarium of psychometrically sound HRQoL measures.

Gender differences in quality of life in coronary artery disease patients with comorbidities undergoing coronary revascularization.

In comparison to male patients with coronary artery disease, female patients suffer from more comorbidities, experience symptoms of coronary artery disease differently and report poorer health-related quality of life (HRQoL) after coronary revascularization. However, there is limited data on the impact of comorbidity burden on the recovery in HRQoL in female and male patients. We investigated the impact of comorbidity burden on the change in HRQoL following coronary revascularization in female patients versus male patients. 230 patients (60 female) with coronary artery disease were assessed before, and two weeks, three months and six months after coronary revascularization. Disease-specific HRQoL was measured with the Short-Form Seattle Angina Questionnaire. Physical and mental health was measured with the Short-Form Health Survey. Comorbidity burden was assessed by the total number of identified comorbidity conditions and by the Charlson comorbidity score. Linear mixed models were used to estimate the effects of time, gender and comorbidity burden on HRQoL. Whereas HRQoL improved after coronary revascularization in all patients, female patients reported poorer physical health and disease-specific HRQoL and their physical health improved more slowly than male patients. A higher comorbidity burden was related with poorer physical health and disease-specific HRQoL in male patients, but not in female patients. A higher comorbidity burden was associated with slower improvement in HRQoL for both female and male patients. Female patients reported poorer HRQoL and their physical health improved more slowly after coronary revascularization, irrespective of comorbidity burden. Higher comorbidity burden was associated with poorer physical health and disease-specific HRQoL in male patients only. Our results indicate that female and male patients recover differently after coronary revascularization. These findings highlight the importance of comorbidity- and gender-specific approaches for evaluating coronary artery disease and coronary revascularization procedures.

Narrative meaning making and integration: Toward a better understanding of the way falling ill influences quality of life.

Falling seriously ill is often experienced as a life event that causes conflict with people's personal goals and expectations in life and evokes existential questions. This article presents a new humanities approach to the way people make meaning of such events and how this influences their quality of life. Incorporating theories on contingency, narrative identity, and quality of life, we developed a theoretical model entailing the concepts life event, worldview, ultimate life goals, experience of contingency, narrative meaning making, narrative integration, and quality of life. We formulate testable hypotheses and describe the self-report questionnaire that was developed based on the model.

Influence of response shift and disposition on patient-reported outcomes may lead to suboptimal medical decisions: a medical ethics perspective.

BACKGROUND: Patient-reported outcomes (PROs) are frequently used for medical decision making, at the levels of both individual patient care and healthcare policy. Evidence increasingly shows that PROs may be influenced by patients' response shifts (changes in interpretation) and dispositions (stable characteristics). MAIN TEXT: We identify how response shifts and dispositions may influence medical decisions on both the levels of individual patient care and health policy. We provide examples of these influences and analyse the consequences from the perspectives of ethical principles and theories of just distribution. CONCLUSION: If influences of response shift and disposition on PROs and consequently medical decision making are not considered, patients may not receive optimal treatment and health insurance packages may include treatments that are not the most effective or cost-effective. We call on healthcare practitioners, researchers, policy makers, health insurers, and other stakeholders to critically reflect on why and how such patient reports are used.

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.

The dynamics in health-related quality of life of patients with stable coronary artery disease were revealed: a network analysis.

OBJECTIVE: Health-related quality of life (HRQoL) is a dynamic construct. Experience sampling methods (ESM) are becoming increasingly popular to capture within-person fluctuations in HRQoL. An emerging approach to analyze such momentary data is network analysis. Our aim was to explore the use of network analysis for investigating the dynamics within individual's HRQoL. STUDY DESIGN AND SETTING: We analyzed ESM data of 30 patients with stable coronary artery disease (CAD). Patients completed eight HRQoL items representing four scales (i.e., positive mood, negative mood, CAD symptoms, and physical state) at nine times a day for seven consecutive days. Network analysis was used to analyze the data at group level to estimate the average HRQoL dynamics and at patient level to estimate HRQoL dynamics of individual patients. RESULTS: Group-level analysis showed that, on average, feeling "tired" and feeling "anxious" are the most central items in patients' HRQoL. Patient-level analysis revealed differences in patients' network structures, indicating within-person differences in HRQoL dynamics. CONCLUSION: This study is one of the first to apply network analysis to momentary HRQoL data. To the extent that network models are meaningful representations of HRQoL dynamics, they may help deepening our insight into experienced HRQoL and provide targets for personalized treatment.

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.