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05 januari 2022, Contains fulltext : 242585.pdf (Publisher’s version ) (Open Access), 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.

28 juli 2021, Contains fulltext : 235716.pdf (Publisher’s version ) (Open Access), Background: To provide holistic care to patients with advanced cancer, health care professionals need to gain insight in patients’ experiences across the different do- mains 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 express- ing how they experienced living with cancer, followed by a semi‐structured inter- view. 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.

18 januari 2021, Contains fulltext : 231668pub.pdf (publisher's version ) (Closed access)

15 juni 2021, Contains fulltext : 234107.pdf (Publisher’s version ) (Open Access), 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.

22 juni 2021, Contains fulltext : 234305.pdf (Publisher’s version ) (Open Access), 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.

Radboud University, 01 april 2021, Promotor : Laarhoven, H.W.M. van Co-promotor : Scherer-Rath, M., Contains fulltext : 231734.pdf (publisher's version ) (Open Access), Titel: Shattered worlds and new possibilities. How narrative integration of contingent life events influences people’s quality of life Publiekssamenvatting NL: Narratieve integratie van ingrijpende levensgebeurtenissen Ingrijpende gebeurtenissen, zoals het krijgen van een ernstige ziekte, kunnen een “ervaring van contingentie” veroorzaken: een confrontatie met de willekeur van het leven, die allerlei levensvragen veroorzaakt (“Waarom overkomt dit mij? Wat betekent het voor wie ik ben?”) Soms vinden mensen verbazingwekkend positieve manieren om met zo’n gebeurtenis om te gaan, zelfs wanneer het gaat om een ongeneeslijke ziekte. In dit promotieonderzoek is een theoretisch model ontwikkeld over deze ervaringen van contingentie als gevolg van een conflict tussen een levensgebeurtenis en iemands belangrijkste levensdoelen. Het beschrijft hoe zo’n gebeurtenis via betekenisgeving in het levensverhaal kan worden geïntegreerd, wat de ervaren kwaliteit van leven beïnvloedt. Op basis van dit model is een vragenlijst ontwikkeld waarmee o.a. de ervaring van contingentie en de narratieve integratie worden gemeten. De vragenlijst draagt bij aan de mogelijkheden van het onderzoeken van ervaringen van contingentie. Ook kan het bijdragen aan de begeleiding van patiënten bij het omgaan met hun ziekte. Publiekssamenvatting ENG: Shattered worlds and new possibilities after disruptive life events Disruptive life events, such as falling seriously ill, can lead to an “experience of contingency”: a confrontation with the randomness of life, evoking existential questions (“Why did it happen to me? What does it mean for who I am?”) Some people find remarkably positive ways to deal with such events, even when confronted with an incurable disease. In this study, a theoretical model was developed about these experiences of contingency as a result of a conflict between a life event and one’s most important life goals. It describes how such an event, through meaning making, may be integrated in on

27 augustus 2020, Contains fulltext : 231718pub.pdf (publisher's version ) (Open Access), 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 app

27 augustus 2020, Contains fulltext : 228000pub.pdf (publisher's version ) (Open Access), 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 app

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27 augustus 2020, Contains fulltext : 228062pub.pdf (publisher's version ) (Open Access), Background: To provide holistic care to patients with advanced cancer, health care professionals need to gain insight in patients’ experiences across the different do- mains 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 express- ing how they experienced living with cancer, followed by a semi‐structured inter- view. 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.

11 september 2019, Contains fulltext : 207410pub.pdf (publisher's version ) (Open Access)

Contains fulltext : 208309pub.pdf (publisher's version ) (Closed access)

08 december 2018, Contains fulltext : 200246pub.pdf (publisher's version ) (Open Access), 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.

27 augustus 2019, Contains fulltext : 205169.pdf (publisher's version ) (Open Access) Contains fulltext : 205169pub.pdf (publisher's version ) (Open Access), Background: To provide holistic care to patients with advanced cancer, health care professionals need to gain insight in patients’ experiences across the different do- mains 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 express- ing how they experienced living with cancer, followed by a semi‐structured inter- view. 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.

Radboud University, 08 november 2019, Promotores : Hermans, C.A.M., Wiegers, G.A., Scherer - Rath, M., Contains fulltext : 209569.pdf (publisher's version ) (Open Access)

16 oktober 2019, Contains fulltext : 208298pub.pdf (publisher's version ) (Closed access)

Contains fulltext : 208302pub.pdf (publisher's version ) (Open Access)

8 december 2018, Contains fulltext : 198448pub.pdf (publisher's version ) (Closed access), Background: Diagnosis and treatment of incurable cancer as a life-changing experience evokes difficult existential questions. Aim: A structured reflection could improve patients’ quality of life and spiritual well-being. We developed an interview model on life events and ultimate life goals and performed a randomized controlled trial to evaluate the effect thereof on quality of life and spiritual well-being. Design: The intervention group had two consultations with a spiritual counselor. The control group received care as usual. EORTC QLQ-C15-PAL and the FACIT-sp were administered at baseline and 2 and 4 months after baseline. Linear mixed model analysis was performed to test between-group differences over time. Participants: Adult patients with incurable cancer and a life expectancy ⩾6 months were randomized in a 1:1 ratio to the intervention or control group. Results: A total of 153 patients from six different hospitals were included: 77 in the intervention group and 76 in the control group. Quality of life and spiritual well-being did not significantly change over time between groups. The experience of Meaning/Peace was found to significantly influence quality of life (β = 0.52, adj. R2 = 0.26) and satisfaction with life (β = 0.61, adj. R2 = 0.37). Conclusion: Although our newly developed interview model was well perceived by patients, we were not able to demonstrate a significant difference in quality of life and spiritual well-being between groups. Future interventions by spiritual counselors aimed at improving quality of life, and spiritual well-being should focus on the provision of sources of meaning and peace.

24 november 2017, Contains fulltext : 178939pub.pdf (publisher's version ) (Closed access), Introduction: Being diagnosed with incurable cancer can be a life changing experience, evoking different spiritual questions and needs. Confronting a serious life-threatening event that occurs not only often unexpected but can also 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. 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 American 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 semi-structured 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’. Discussion: 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. Keywords: experiences of contingency, advanced cancer, spirituality, interview study, American cancer patients

Radboud University, Promotor : Hermans, C.A.M. Co-promotor : Scherer - Rath, M., Contains fulltext : 194918.pdf (publisher's version ) (Open Access)

21 november 2017, Contains fulltext : 183667pub.pdf (publisher's version ) (Closed access), 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.

Contains fulltext : 121465pub.pdf (publisher's version ) (Closed access)

Contains fulltext : 122454.pdf (publisher's version ) (Closed access)

08 december 2017, Contains fulltext : 181536.pdf (publisher's version ) (Open Access), 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 spiritua

Radboud University, 20 januari 2017, Promotores : Hermans, C.A.M., Verschuren, P.J.M. Co-promotor : Scherer - Rath, M., Contains fulltext : 166032.pdf (publisher's version ) (Open Access)

26 september 2017, Contains fulltext : 176716pub.pdf (publisher's version ) (Open Access), 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.

University of Amsterdam, 7 december 2017, Promotores : Laarhoven, H.W.M. van, Schilderman, J.B.A.M. Co-promotor : Scherer - Rath, M., Item does not contain fulltext

Contains fulltext : 71826pub.pdf (publisher's version ) (Closed access)

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