There is increasing recognition of the emotional dimensions of the cancer experience, and in Australia a number of resources have been developed to enhance health professionals’ ability to provide psychosocial support for patients. Unfortunately patients with advanced cancer are not well-served in terms of resources, most of which focus on early disease and survival. Children of parents with advanced cancer face a considerable burden, but parents may avoid discussion with their children, partly because they wish to protect them from distress, partly because of lack of support and limited access to information to guide them in this challenging task. There are limited numbers of health professionals with the psychosocial knowledge and skills to assist parents, and they are largely confined to metropolitan centres, making timely and equitable access to appropriate information and support for parents a major problem. Improving access to information and support could be achieved through extension of existing educational and supportive roles of a variety of health professionals. However health professionals may avoid discussion about emotionally-challenging issues because of perceived lack of training, and low professional confidence. Avoidance is also known to be a common defence mechanism for health professionals who find that the burden of caring arouses painful and sad feelings. Professional education has traditionally not encouraged reflection on the emotional dimensions of work, or assisted in the development of coping strategies. The aim of this study was to develop and evaluate the effectiveness of an educational intervention to enhance the capacity of health professionals to provide timely, evidence-based information and support for parents with advanced cancer, to guide them in talking with their children. Selection of oncology nurses for this purpose was based on their accessibility across treatment settings, their existing skills in education and support, and the fact that patients find supportive care provided by nurses highly acceptable. The study employed mixed methods across several phases to achieve this aim. In the first instance, relevant literature was used as a framework for developing an educational intervention. Qualitative methods were used to refine the educational intervention: - focus groups with oncology nurses examined perceptions of their supportive care roles including barriers and educational needs, and critical feedback was sought from a group of nurse experts regarding the scope and style of the intervention. This data informed the development of the final intervention which comprised a self-directed educational manual and day-long interactive communication skills training workshop, supplemented with a brochure for parents with advanced cancer. The brochure was developed in response to nurses’ expressed need for written resources to support them in their interactions with parents with advanced cancer. The brochure was based on relevant literature and refined using information gathered through in-depth interviews with parents with advanced cancer. A quasi-experimental design was used to evaluate the effectiveness of the intervention using pre and post-measures. Thirty-five oncology nurses were recruited from three oncology centres in Brisbane, three withdrawing prior to completion of the educational intervention. Nurses’ stress, burnout and psychological morbidity were assessed by structured measures; attitudes and confidence were assessed by study-developed questionnaires. Knowledge was assessed by examination of nurses’ responses to two clinical vignettes describing a parent requesting help from the nurse about how to respond to their child. Changes in communication skills were evaluated by video-taped interviews with simulated cancer patients trained to deliver a number of scripted cues. Following participation in the educational intervention there were significant improvements in nurses’ self-reported confidence in ability to provide information and support for parents with advanced cancer, and initiate discussion with parents about emotionally-challenging topics. After the intervention nurses were significantly more likely to take an active role in self-care strategies. There were significant improvements in generic communication techniques and communication skills specific to this study: emphasising to a parent the importance of open communication with their children; confidence in responding to an overtly distressed patient, and openly discussing poor prognosis. Analysis of responses to the vignettes revealed significant post-training reduction in focus on practical issues, reduced referral of the parent to other health professionals, and significant increases in empathic engagement and supportive advice likely to assist the parent to respond to their child. There were no changes in stress and burnout or psychological morbidity. The response rate for an acceptability survey was low, but respondents enthusiastically endorsed the educational intervention, describing changes in clinical practice: improved listening; increased engagement with patients about emotional concerns, and reduced avoidance of potentially-distressing discussion. Study participants were a self-selected group which may not be representative of all oncology nurses, meaning that the results of this study many not be generalisable. Hence the next step is a randomised controlled trial, in which the evaluation is expanded to include an examination of parental satisfaction with a brief supportive intervention delivered by a trained nurse, using structured measures of family adjustment.

Indiana University-Purdue University Indianapolis (IUPUI) / Mindfulness-based interventions (MBIs) have demonstrated efficacy in reducing symptoms in survivors of early-stage cancer and have shown promise in adults with advanced cancer and their family caregivers. These interventions may be especially helpful for coping with advanced cancer because acceptance and a greater focus on present-moment experiences are central to the adjustment process. Mindfulness may be a potential mechanism underlying MBI’s health effects, yet suboptimal assessment of mindfulness hinders examination of this hypothesis. Widely used self-report measures of mindfulness require participants to have high self-awareness and comprehend a complex skill and show limited responsiveness to MBIs. Behavioral assessment of mindfulness may address the limitations of self-report measures. The goal of the current study was to obtain preliminary evidence of the validity of a behavioral measure of mindfulness, Levinson and colleagues’ breath counting task, and its responsiveness to MBI among patients and caregivers coping with advanced cancer. Fifty-five patient-caregiver dyads were recruited from a university hospital and community clinics in Indiana. Dyads were randomized to either a 6-week MBI or a usual care control condition. Measures were administered at baseline prior to intervention (week 0), at the end of the 6-week intervention period (week 6), and 1-month post-intervention (week 10). Measures included the breath counting task, self-reported mindfulness, avoidant coping, and distress. Linear mixed modeling was used to determine whether the MEANING intervention led to increased behavioral and self-reported mindfulness compared to the usual care group. Caregivers in the MEANING condition showed improved behavioral mindfulness relative to caregivers in usual care, whereas patients in both the MEANING and usual care conditions showed relatively stable behavioral mindfulness over time. Additionally, there was no evidence that the MEANING intervention impacted behavioral mindfulness to a greater extent than self-reported mindfulness. To further examine the behavioral mindfulness measure’s validity, its relations with self-reported mindfulness, avoidant coping, and distress were examined at all time points. For both patients and caregivers, correlations between behavioral and self-reported mindfulness were small or nearly zero and were not uniformly positive. In the MEANING condition, correlations showed mostly small changes over time, and in the control condition, correlations generally showed little change over time. In addition, for patients and caregivers, most correlations between behavioral mindfulness and distress and avoidant coping were approaching zero or small. Results support the feasibility of the breath counting task in adults with advanced cancer and their caregivers, but provide limited support for its validity. The task warrants further evaluation in populations coping with chronic illness.

This descriptive phenomenology had two purposes: first, to explore the experience of making decisions for women with advanced cancer; and second, to explore the experience for significant others and health care team members as women made their decisions. A plethora of research exists on making decisions during the cancer experience, including research regarding: 1) decision-making styles; 2) factors or determinants which play a role in decision making; 3) information: needs, seeking behaviours, and utilization; and 4) decision support technologies. However, a gap exists in the literature regarding the experience of making decisions. Conversational interviews were conducted with five women and three relevant others for each woman: her primary nurse, her oncologist, and one significant other. Women were also provided with the opportunity to journal in a diary or email their memories of decisions and the surrounding experience. Van Manens (1990) phenomenology guided the analysis of data. For the women, analysis centered on the four existentials of lived time, lived other, lived space, and lived body, revealing four themes of the lived experience of making decisions: 1) control, 2) influence, 3) normalcy, and 4) vulnerability. Phenomenological analysis on data from the significant others revealed three themes: 1) what used to be, 2) power shift, and 3) life on hold. Themes for the health care teams experience as women made decisions were: 1) emotional detachment, 2) discomfort, and 3) acquiescing. Understanding the perspectives from these lived experiences will assist the health care team to support women, and their significant others, through the experience of making decisions.

This descriptive phenomenology had two purposes: first, to explore the experience of making decisions for women with advanced cancer; and second, to explore the experience for significant others and health care team members as women made their decisions. A plethora of research exists on making decisions during the cancer experience, including research regarding: 1) decision-making styles; 2) factors or determinants which play a role in decision making; 3) information: needs, seeking behaviours, and utilization; and 4) decision support technologies. However, a gap exists in the literature regarding the experience of making decisions. Conversational interviews were conducted with five women and three relevant others for each woman: her primary nurse, her oncologist, and one significant other. Women were also provided with the opportunity to journal in a diary or email their memories of decisions and the surrounding experience. Van Manens (1990) phenomenology guided the analysis of data. For the women, analysis centered on the four existentials of lived time, lived other, lived space, and lived body, revealing four themes of the lived experience of making decisions: 1) control, 2) influence, 3) normalcy, and 4) vulnerability. Phenomenological analysis on data from the significant others revealed three themes: 1) what used to be, 2) power shift, and 3) life on hold. Themes for the health care teams experience as women made decisions were: 1) emotional detachment, 2) discomfort, and 3) acquiescing. Understanding the perspectives from these lived experiences will assist the health care team to support women, and their significant others, through the experience of making decisions.

Nursing care of patients with advanced cancer is challenging because it touches many dimensions of a patient’s life. The study of spiritual pain is relatively new although potentially very important in understanding how to help patients with advanced cancer achieve a sense of well-being. The purpose of this pilot study was to increase scientific knowledge from the participants‟ perspectives about experiences of spiritual pain and physical pain, and identify correlates of well-being from the participants‟ own perspectives in the context of advanced cancer. Four research questions were examined in this study: 1. What is the relationship between physical pain and spiritual pain, as perceived by participants who have advanced cancer? 2. What is the relationship between spiritual pain and existential well-being, as perceived by participants who have advanced cancer? 3. What is the relationship between spiritual pain and physical pain in the context of the demographic and health-related variables of age, gender, years of education, and months since diagnosis? 4. What factors do participants with advanced cancer identify as important to their existential well-being? A descriptive correlational design was used to study the research questions in a convenience sample of 30 adult participants from an outpatient oncology clinic in Southern Arizona. Quantitative data were obtained through interviews using the Providence Saint Vincent Medical Center Pastoral staff’s Spiritual Pain Assessment Tool and Paloutzian and Ellison’s (2009) Existential Well-Being Scale, and a Physical Pain Rating scale along with a demographic and health-related form. Qualitative data were also obtained from the participants. Descriptive, correlational, and content analyses generated results of a significant relationship between Spiritual Pain and Existential Well-Being, and a non-significant relationship between Physical Pain and Spiritual Pain. The following themes (with the first three being most frequently mentioned) were identified as important to the participants‟ well-being during their experience of advanced cancer: Meaningful activity, family and friends, and spiritual aspects, followed by health/nutrition, symptom management, and finances. Results warrant continued research into spiritual pain as it relates to existential well-being in persons with advanced cancer

An individual with advanced cancer moves through his or her illness trajectory engaged in an ongoing process of negotiation with the health care system, caregivers, and family members. The ability to maintain control is a key principle upheld in western society, but it may be difficult to do so if cognitive or physical decline occurs during the palliative phase of advanced cancer. Cognitive decline in progressive dementias such as Alzheimers disease or AIDS Dementia Complex is often gradual, allowing such individuals and their family members time to reassign responsibilities for illness management that protect the sense of control of the ill family member. When the onset of cognitive decline occurs more quickly, as is often the case in advanced cancer, ill individuals and their family members may not have the luxury of time to incorporate a transition in responsibilities for illness management into their collective decision-making process, leading to a sense on the part of the person with advanced cancer that he or she has lost control. Current understanding of this transition is limited, and thus the qualitative, grounded theory study, Decision-Making in Family Dyads in the Context of Advanced Cancer was conducted. Advanced cancer patients (n = 5), family caregivers (n = 3), and bereaved caregivers (n = 9) from palliative home care settings in Ontario were recruited for the study. Purposive and theoretical sampling of participants occurred until saturation was reached. Data collection, coding, and analysis occurred simultaneously. Results indicated that family caregivers who tried to fulfill their dying family members wishes often did so at the expense of their own health or finances. The core category Covering captured the strategies caregivers used to enable their family members to die in the manner of his or her choosing. The basic social process Dancing on the Stairs chronicled the stages of the patient-caregiver relationship as they navigated through the grey areas of decision-making in their final months together. The findings may assist health care personnel striving to help individuals with advanced cancer and their family caregivers maintain a sense of control during the palliative phase of an illness.

No description available.

People with advanced cancer may have significant challenges to their physical, emotional, spiritual, and social well-being. However, some individuals are able to experience an overall sense of well-being in spite of these challenges. This study sought to understand the experience of well-being from the perspective of people with advanced cancer. Guided by interpretive descriptive methodology, eight participants were interviewed and the data were analyzed using the constant comparative approach. The participants took an active role in their well-being experience and described four main themes: view of self, the fluctuating nature of well-being, choices made to enhance well-being (including choosing supportive relationships, putting one‟s own needs first, treatments, focusing on the positive, and honoring the negative), and living in ambiguity. These findings have implications for nursing practice, nursing education, and health care organizations. / Graduate

Patients with advanced cancer (PWAC) are living months-years longer. With advances in oncological care, their illness can be considered chronic rather than terminal. This population of survivors emerged within the last two decades and their needs are not well understood nor are appropriate resources available. A particular concern is depression. Both clinical and subclinical depressive symptomatology can impede functioning and quality of life (QOL). Using secondary clinical data from a palliative rehabilitation program (PRP), the thesis objectives were to a) examine pre-post changes in functioning and QOL, b) examine the mechanisms of change in depressive symptomatology, and c) examine the longitudinal course of depressive symptomatology. Study 1 examined pre-post changes in QOL and functioning. Outcomes from 67 PRP patients were analyzed using paired t-tests. Results revealed ameliorations in the majority of domains (e.g. physical functioning, malnutrition) including self-reported “depression.” These results counter the existing literature that has shown that these typically stay stable until one month before death, when they drastically worsen. This begins to support that rehabilitation may be beneficial for PWAC. Study 2 focused on the finding that depression scores decreased. Changes in systemic inflammation, exercise, and general self-efficacy (GSE) from 80 PRP patients were examined as predictors of change in depressive symptomatology using a hierarchical linear regression. The model accounted for 15% of change in depression symptomatology, and GSE was the only significant predictor. This suggests that a GSE theoretical framework may be helpful in reducing depressive symptomatology in interdisciplinary palliative rehabilitation. Study 3 focused on longitudinal depressive symptomatology. Three-month follow-up data from 80 patients were analyzed using a repeated measures ANOVA for continuous data and a Cochrane’s Q analysis for grouped data. Results revealed that patients maintained reduced scores at follow-up. This counters the existing literature, in which longitudinal maintenance is poor following exercise-based interventions. Therefore, PRP may offer something beyond what other published interventions have previously. These finding will be discussed in the context of other existing literatures and the implications will be discussed.

Indiana University-Purdue University Indianapolis (IUPUI) / Many advanced cancer patients receive intensive treatment near the end of life (EOL). Intensive treatment near the EOL is often associated with worse outcomes, such as worse quality of life (QOL), greater distress in patients and caregivers, and higher health care costs. For cancers typically unresponsive to chemotherapy such as lung and gastro-intestinal (GI), the side effects of intensive treatment are endured without increasing survival time. To date, research on EOL care in advanced cancer patients has focused on patient prognostic understanding, physician communication, and patient distress. These factors do not fully explain why many patients receive intensive treatment near the EOL when there is no hope for cure. Hence, there is a need to better understand the factors that influence EOL treatment in order to improve patient and caregiver outcomes. Self-Regulation Theory (SRT) provides a framework that may help explain motivations and care decisions in this population. This study had two aims: 1) to examine the associations between EOL clinical encounters (i.e., EOL conversations with a physician) and treatment intensity in advanced cancer patients near the EOL; and 2) to examine the associations between important SRT constructs (i.e., goal flexibility, hope, and optimism) and treatment intensity in advanced cancer patients near the EOL. A sample of 76 advanced lung and GI cancer patients was recruited from Indiana University Simon Cancer Center. Hope predicted receiving chemotherapy closer to death (β = -.41, t (66) = -2.31, p = .025), indicating more intensive treatment near EOL. Other predictor variables were not significantly associated with intensive treatment. Implications and methodological limitations are discussed.