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Young adults (YAs), defined as individuals between the ages of 18 and 39 years, experience unique challenges when diagnosed with advanced cancer. Using the social constructivist grounded theory approach, we aimed to develop a theoretical understanding of how YAs live day to day with their diagnosis. A sample of 25 YAs (aged 22–39 years) with advanced cancer from across Canada participated in semi-structured interviews. Findings illustrate that the YAs described day-to-day life as an oscillating experience swinging between two opposing disease outcomes: (1) hoping for a cure and (2) facing the possibility of premature death. Oscillating between these potential outcomes was characterized as living in a liminal space wherein participants were unsure how to live from one day to the next. The participants oscillated at various rates, with different factors influencing the rate of oscillation, including inconsistent and poor messaging from their oncologists or treatment team, progression or regression of their cancer, and changes in their physical functioning and mental health. These findings provide a theoretical framework for designing interventions to help YAs adapt to their circumstance. [ABSTRACT FROM AUTHOR]

In cancer care, gaps in support to help patients manage and live with the side-effects from cancer treatments have increased the emphasis on empowering patients to be more active and involved in managing their own health. However, empowerment in relation to promoting self-management behaviors is not well understood. Using the social constructivist grounded theory approach, our goal was to develop a theoretical understanding of this phenomenon in relation to the self-management behaviors of post-treatment cancer patients. Twenty-two post-treatment cancer patients participated in a semi-structured focused interview to co-construct with us how empowerment is defined, described, and experienced in relation to their capacity to self-manage. Through this co-construction, we defined empowerment as a process of personal growth, a display of fortitude and strength when participants confronted the impact of their illness that emerged in two dynamic and paradoxical ways: 1) establishing control over the impact of the illness as a means to maintain normalcy and to circumvent change over an eroding and changing sense of self and 2) relinquishing control over aspects of the illness deemed irrepressible and acknowledging and accepting change. When successful at establishing and/or relinquishing control, participants no longer viewed cancer as a threat, but re-interpreted their illness as also having a beneficial "empowering" experience and more capable of managing. Findings will guide the development of self-management interventions that use empowerment as a core construct. [ABSTRACT FROM AUTHOR]

Adolescents and young adult (AYA) oncology care has evolved to address their unique supportive care needs, yet deficiencies remain. We planned a multiphase sequential mixed methods study beginning with focus groups (FGs) with AYAs receiving care at the Princess Margaret Cancer Centre, to improve supportive care delivery. Herewith, we report on the preliminary findings from first phase of project and outline future expected goals. Our findings suggest four major themes identified from FG discussion with AYAs: (1) having peer-driven support, (2) incorporating hybrid approach to information delivery, (3) integrating general practitioners in AYAs care, and (4) providing AYAs-specific supportive care programs. [ABSTRACT FROM AUTHOR]

Background: The importance of patient-centered measurement in cancer care has led to recognition of the potential for caregiver-reported outcomes to improve caregiver, patient and healthcare system outcomes. Yet, there is limited evidence to inform caregiver-reported outcome implementation. Our purpose was to generate evidence to inform the meaningful and constructive integration of caregiver-reported outcomes into cancer care to benefit caregivers, including exploration of the question of the extent to which these assessments should be shared with patients. We focused on caregivers of patients with colorectal cancer (CRC) because CRC is common, and associated caregiving can be complex. Results: From our Interpretive Description analysis of qualitative interview data from 78 participants (25 caregivers, 37 patients, and 16 healthcare providers [HCPs]), we identified contrasting perspectives about the sharing of caregiver-reported outcome assessments with patients with CRC. Those who preferred open communication with both the patient and caregiver present considered this essential for supporting the caregiver. The participants who preferred private communication without the patient, cited concern about caregiver- and patient-burden and guilt. Recognizing these perspectives, HCPs described strategies used to navigate sensitivities inherent in preferences for open versus private communication. Conclusions: The integration of caregiver-reported outcomes into cancer care will require careful consideration of caregiver and patient preferences regarding the communication of caregiver assessments to prevent additional burden. [ABSTRACT FROM AUTHOR]

Background: Medical Assistance in Dying comprises interventions that can be provided by medical practitioners to cause death of a person at their request if they meet predefined criteria. In June 2016, Medical Assistance in Dying became legal in Canada, sparking intense debate in the palliative care community. Aim: This study aims to explore the experience of frontline palliative care providers about the impact of Medical Assistance in Dying on palliative care practice. Design: Qualitative descriptive design using semi-structured interviews and thematic analysis Settings/participants: We interviewed palliative care physicians and nurses who practiced in settings where patients could access Medical Assistance in Dying for at least 6 months before and after its legalization. Purposeful sampling was used to recruit participants with diverse personal views and experiences with assisted death. Conceptual saturation was achieved after interviewing 23 palliative care providers (13 physicians and 10 nurses) in Southern Ontario. Results: Themes identified included a new dying experience with assisted death; challenges with symptom control; challenges with communication; impact on palliative care providers personally and on their relationships with patients; and consumption of palliative care resources to support assisted death. Conclusion: Medical Assistance in Dying has had a profound impact on palliative care providers and their practice. Communication training with access to resources for ethical decision-making and a review of legislation may help address new challenges. Further research is needed to understand palliative care provider distress around Medical Assistance in Dying, and additional resources are necessary to support palliative care delivery. [ABSTRACT FROM AUTHOR]

PURPOSE Young adults (YAs; defined as 18-39 years of age) with advanced cancer are a group for whom standardized age-appropriate palliative care has not been established. The purpose of this study was to explore the YA experience and perceptions of palliative care in an outpatient interdisciplinary palliative care clinic for this population. PATIENTS AND METHODS Using an interpretive descriptive design, semistructured interviews were conducted with 12 YAs with advanced cancer who were being seen jointly by a palliative care physician and psychiatrist in an ambulatory palliative care clinic. Interviews explored participants' understanding and experiences of receiving palliative care. Six family members were also interviewed to build on the YA experience. Data collection and analysis occurred concurrently, drawing on the constructivist grounded theory method to analyze the data. RESULTS Participants described being referred to and seen in the interdisciplinary palliative care clinic as a conflicting and at times difficult experience because of the feeling of being categorized as palliative as YAs. Even so, there were key aspects associated with the specific palliative care approach that allowed YAs to cope with this new label, leading to a beneficial experience, specifically: provided YAs with time and space to explore the experience of having cancer at a younger age, created repeat opportunities to talk openly with people who "got it," and highlighted the importance of including family support in the care of YAs. CONCLUSION YAs who were referred to the interdisciplinary palliative care clinic struggled with the category of palliative care but also found the care they received beneficial. Findings provide an approach to palliative care tailored to YAs with advanced cancer. [ABSTRACT FROM AUTHOR]

PURPOSE: Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely provided for health care providers (HCPs) in oncology. This study aims to explore the experiences of HCPs involved in introducing and providing palliative care caring for AYAs with advanced cancer and their families to understand the unique challenges HCPs experience. METHODS: Using a qualitative descriptive design, semistructured interviews were conducted with medical and radiation oncologists, palliative care physicians, psychiatrists, and advanced practice nurses involved in caring for AYAs diagnosed with advanced cancer (N = 19). Interviews were transcribed verbatim and analyzed using thematic analysis in combination with constant comparative analysis and theoretical sampling. RESULTS: There were 19 participants, 9 men and 10 women, with a median age of 45 years (range, 24-67 years). Six were palliative care physicians, 5 medical oncologists, 4 nurse practitioners, and 2 each radiation oncologists and psychiatrists. Overall, participants perceived the provision of palliative care for AYAs to be more difficult compared with older adults. Four themes emerged: (1) challenges helping AYAs/families to engage in and accept palliative care, (2) uncertainty regarding how to involve the family, (3) HCP sense of tragedy, and (4) HCP sense of emotional proximity. CONCLUSION: Findings from this study support the development of dedicated training for HCPs involved in palliative care for AYA. [ABSTRACT FROM AUTHOR]