Citations

Evidence-based practice is critical to providing high-quality hospice and palliative nursing care. Professional organizations, such as the Hospice and Palliative Nurses Association (HPNA), play a critical role in shaping the future of the hospice and palliative nursing field by identifying gaps in the science and fostering collaborative research efforts to inform evidence-based practices. One such driver is the tri-annual HPNA Research Agenda, which outlines key research priorities in hospice and palliative nursing, ultimately aiming to accelerate translation of research into practice and practice improvements. In this article, 6 emerging research scholars in the field and present and former co-chairs of the HPNA Emerging Research Scholar Special Interest Group reflect on the experiences that led them to pursue research careers in hospice and palliative nursing. Through a process of collective self-assessment, these scholars articulated their shared progress toward addressing the research priorities outlined in the 2023–2026 HPNA Research Agenda as a means of generating insights to direct future research efforts in the field.

Spousal caregivers of persons living with serious illnesses experience significant emotional and social challenges related to their caregiving role. The purpose of this study was to gain a deeper understanding of how spousal caregivers perceive current and anticipated losses associated with caring for a partner living with advanced cancer. Spousal caregiver participants engaged in semistructured interviews about their caregiving experiences and subsequent changes that occurred in their lives. Caregivers experienced social changes, emotional energy investment, and relationship changes as sources of grief. Social changes involved a loss of freedom and increased isolation, while emotional energy investment manifested as suppressed emotions and fears about the future. Relationship changes encompassed both positive and negative shifts in communication and roles. Targeted interventions, such as support groups and counseling, are essential to mitigate the negative impacts of caregiving and improve the well-being of older adult spousal caregivers.

Adolescents and young adults living with advanced cancer must often discover new rules for living during cancer treatment. Such experiences may lead them to emerge to higher levels of consciousness and find personal meaning in these experiences. Newman’s theory of health as expanding consciousness was this qualitative research study’s framework examining hope’s role for adolescents and young adults living with advanced cancer. Fifteen participants aged 12-21 years created written narratives and illustrations to describe their experiences with hope. We propose an updated theoretical model in which hope facilitates expanding consciousness in adolescents and young adults living with advanced cancer.

Background: Adolescents and young adults (AYAs) living with advanced cancer may experience a heightened risk for existential distress. Addressing AYAs’ hopes can stimulate a dialogue about their concerns, values, and goals, provide a path to holistically support their existential needs, and potentially alleviate their distress. This study aimed to evaluate hope's role in a sample of AYAs living with advanced cancer. Method: This study used a Husserlian phenomenology-informed descriptive qualitative research design to elicit AYAs’ experiences with hope while living with advanced cancer. Participants were virtually recruited from an academic medical center and an online non-profit organization. Thematic analyses were performed across the data set to identify final themes. Results: Fifteen AYAs aged 12–21 years diagnosed with advanced hematological (80%) or solid (20%) malignancies participated in this study. A main theme of Simple Supports of Hope with a subtheme of Diversion was identified. Participants described music as a form of diversion, which supported their hope. Participants found listening to music calming and comforting and helped them cope with their distress. Performing music provided a creative outlet for negative feelings associated with cancer treatment. Participants reported creating music transformed and deintensified the treatment environment and helped spread hope to healthcare staff. Discussion: AYAs may intentionally use music to improve emotional expression, empowerment, connection, and coping strategies throughout the treatment process for cancer. Additional research needs to be conducted exploring the use of music interventions such as therapeutic songwriting or compositional music therapy to assist AYAs with building coping strategies during treatment for cancer.

Despite evidence that specialized care for seriously ill nursing home (NH) residents is needed, barriers to accessing palliative care (PC) remain. A significant issue is the complexity of the referral process that inhibits timely and equitable access to care. This qualitative descriptive study explored the PC referral process in NHs. Using rapid qualitative analysis with semi-structured interview data from NH staff, primary care, and specialty PC providers ( N = 17) in six states, this study outlines a multistep referral process along with barriers and proposed solutions. Key recommendations include comprehensive PC education program development, implementation of an evidence-based PC screening tool, and the holistic integration of PC services in NHs.

Abstract Purpose: Describe spirituality’s role in a sample of Hispanic adolescent and young adult (AYA) cancer survivors. Methods: This convergent parallel mixed-methods study aimed to explore participants’ lived experiences with hope during cancer treatments and cancer survivorship. A purposive sample of Hispanic AYAs aged 18-39 years who completed cancer treatments 2-5 years ago were virtually recruited for participation. First, participants completed surveys about hope, demoralization, depression and anxiety, and health related quality of life. Second, participants completed virtual semi-structured interviews about their experiences with hope during cancer treatments and cancer survivorship and prepared narratives about their experiences. Thematic analyses were iteratively performed across the data set to identify final themes. Results: Ten Hispanic AYA cancer survivors aged 22-36 years old participated in this pilot study. Seven participants (70%) were female, and three participants (30%) were male. Six participants (60%) experienced non-hematologic malignancies, and four participants (40%) experienced hematologic malignancies. Eight participants (80%) preferred to participate using Spanish, while two (20%) preferred to participate using English. The theme Spirituality, and subthemes Living by Faith, God as a Resource, and Spiritual Gratitude were identified as concepts participants linked to their conceptualization of hope during cancer treatment and survivorship. Conclusions: Hope and spirituality may be conceptually linked to coping behaviors among Hispanic AYA cancer survivors. Hope through faith may be a learned spiritual value in Hispanic AYAs and might play a role in their spiritual and cognitive development. Further research is needed to explore the potentially protective value of hope and spirituality for the Hispanic AYA population.

Abstract Background Patients with cancer may face a significant knowledge deficit as they battle their illness. We developed a first of its kind comprehensive patient symposia (Living with Cancer (LWC): A Mayo Clinic Symposia for Patients and Loved Ones) with 8 hours of general sessions (covering nutrition, exercise, cancer inheritance, financial and legal challenges, communication, survivorship, and cancer therapy) and a 4-hour disease specific breakout (myeloid diseases, myeloma, lymphoma, chronic lymphocytic leukemia, breast cancer, lung cancer, cutaneous malignancy, colorectal cancer, and prostate cancer). Through voluntary questionnaires, we studied the impact of this cancer symposium on quality of life, cancer specific knowledge, and symptom management among cancer patients. Methods LWC meeting attendees were provided surveys prior to and 3 months following the convention. Surveys included 1) EORTC-QLQ-C30; 2) new disease understanding tool developed specifically for this conference; 3) distress thermometer and problems checklist; 4) validated disease-specific questionnaires. Changes over time were assessed using McNemar’s tests and paired t-tests for categorical and continuous variables, respectively. Results Patients:158 attendees completed the pre-convention survey. The median age was 67.5 (range 30-86), 49% males, 76% over 1 year from diagnosis. Cancer type included 37% hematologic malignancies, 23% breast cancer, 23% prostate cancer, and 17% other. The hematologic malignancies were comprised of 34% leukemia, 31% CLL/lymphoma, 25% amyloid/multiple myeloma, and 9.3% myeloproliferative neoplasms. Baseline Disease Understanding, Symptoms, QOL: Most attendees endorsed understanding their disease quite a bit (54%) or very much (29%). Most respondents reported at least “quite a bit” of understanding regarding treatment options (84%), screening modalities (83%), symptomatology (74%), and cancer-related side effects (71%). Attendees endorsed the least understanding of disease-related stress (49%), risk factors (49%), management of disease related fatigue (41%), and legal issues related to disease/treatment (27%) Mean QLQ-C30 scores were 84.4 for physical functioning, 83 for role functioning, 80.7 for social functioning, and 72.7 for global health status. The symptoms with highest mean scores were insomnia, fatigue, and pain. Knowledge Improvement Durable at 3 Months: 115 (73%) patients completed the post-symposium survey. There was improvement in 12 of 14 areas of self-reported knowledge (Table 1) especially in areas of nutrition, and management of disease related stress and fatigue (all p<0.001). Symptomatic Changes at 3 Months: There was no significant change in QLQ-C30 physical/role/emotional functioning, fatigue, pain, or insomnia. Conclusions This first evaluation of a patient centered cancer symposium as an education intervention suggests patients selecting to participate in such an event seek to improve an already solid knowledge base regarding their malignant disease. Participating in the event improved disease specific knowledge in numerous areas. However, as a single intervention, function and symptoms tended not to improve with participation. Future efforts on 1) improving participation with disease knowledge “naïve” patients and 2) targeted efforts aimed at specific symptom management (i.e. insomnia, stress) are planned. This study serves as an avenue to empower patients and inform physicians to improve the experience of living with cancer. Disclosures: No relevant conflicts of interest to declare.

Abstract Background: Patients diagnosed with cancer experience a significant influx of health care information while continuing to demonstrate understanding deficit regarding their disease and health. This knowledge deficit can negatively impact a patient’s acute and long term health care experience. By identifying patient information deficits and needs, health care providers may be better able to provide targeted education to patients and families. Aims: The aim of this study is to evaluate the impact of a patient centered cancer symposium on knowledge level, reported symptom burden, and desired information from a broad population of cancer patients. Methods: Surveys were distributed to the attendees of the third annual Mayo Clinic “Living with Cancer” patient symposium in January 2014. While 700 individuals registered for the event, only individuals with a past or present cancer diagnosis were asked to participate. Surveys included demographic data in addition to a questionnaire evaluating disease comprehension, symptom burden, desired information and desired role in the health care decision making process. Results: 75 patients completed the pre-intervention and post-intervention survey. There were slightly more female participants (60.2%). Disease types included 40% hematologic malignancies, 27% breast cancer, 20% prostate cancer and 13% other. The majority of patients were greater than 3 years from cancer diagnosis (62%). Baseline Patient Understanding: Most respondents reported understanding their disease quite a bit (54%) or very much (30%). Respondents reported the majority of their knowledge regarding their disease came from their oncologist (56%), oncology nurse (24%), previous symposiums (22%), or the internet (15%). Most respondents reported “quite a bit” or greater comprehension of screening tests (75%), monitoring disease response to treatment (70%), monitoring disease recurrence (70%), treatment options (67%) and treatment side effects (73%). There was no consensus among participants regarding understanding or limiting risk factors, symptoms associated with disease relapse, fatigue and pain management, navigating the health care system, financial considerations, or confidence in their primary care physician’s involvement in their cancer or post-cancer care. A large proportion of attendees reported “quite a bit” or greater desire for increased information/understanding regarding their disease (83%), risk factors (83%), nutrition (80%), screening tests (69%), and management of fatigue (69%) and stress (68%). Knowledge Improvement Durable at 3 months: There was improvement in 18 of 20 areas of self-reported knowledge. This was noted in increased percentage of respondents reporting “quite a bit” or greater comprehension, especially in areas of disease risk factors(55%pre vs 63%post), disease side effects(55%pre vs 63%post), and health care navigation(53%pre vs 69%post). The reported desire for “quite a bit” or more increased understanding on various topics did decrease post symposium regarding their disease(87.9% pre vs 68.9%post), disease risk factors(86.3%pre vs 64.0%post), screening tests(74.7%pre vs 63.3%post), and nutrition(78.4%pre vs 64.9%post)(all p<0.05). There was no significant decrease in the desire for increased understanding managing stress and fatigue. Summary: Demonstrated in this study, individuals choosing to attend a patient-centered cancer symposium, seek to improve an already solid knowledge base. Study participants indicate a significant desire for increased information on all topics, even those with sufficient level of knowledge reported. This indicates that some cancer patients’ thirst for knowledge is difficult to quench, and may benefit from recurrent education opportunities. The improvement in almost all topics assessed indicates a patient centered symposium is an effective method to provide information to patients regarding the spectrum of cancer health management. Disclosures No relevant conflicts of interest to declare.

Abstract Background: A cancer diagnosis results in a multitude of health care decisions that require adequate patient understanding to navigate the health care system. Understanding the type and degree of information needs of cancer patients is imperative to instructing effective and pertinent patient education. This study sought to evaluate the impact of a patient centered cancer symposium on knowledge level, knowledge needs and symptom burden in a cancer patient population. Methods: Surveys were distributed to attendees of the Mayo Clinic "Living with and Surviving Cancer" patient symposium in January 2016. A follow up survey was sent to participants 3 months after the symposium. Surveys included demographic data, questionnaire evaluating disease comprehension and information assessment, symptom burden, desired information and quality of life assessment. Responses were compared between patients with hematologic and solid tumor malignancies by chi-square test. Pre and post comparisons were done in patients completing both surveys by McNemar test. Results: Demographics: 150 patients completed the pre-intervention survey. Average age of participants 67.5 years. Some patients reported more than 1 malignancy. Disease types represented included hematologic malignancies (N=60), specifically multiple myeloma (N=23), lymphoma (N=26), leukemia (N=8) and MPNs (N=3) as well as solid tumor malignancies (N=90). Most patients were diagnosed with cancer at least 1 year prior to the intervention (N=137). Patients with hematologic malignancies were more likely to be on active treatment at the time of the convention (N=35, 58%) compared to solid tumor malignancies (N=37,41%). Baseline Knowledge: Most patients reported an adequate level of knowledge defined as the proportion of participants reporting "quite a bit" or "very much understanding" on the topic of disease understanding (76%). Lowest levels of knowledge were legal issues (18%), pain management (31%), disease relapse symptoms(46%), fatigue management (48%), end of life decision making (50%) and financial management (50%). Patients with hematologic malignancies were more likely to report understanding of fatigue management (N=36, 60%) but less like to report understanding disease risk factors (N=20, 33%), or increased nutritional interest following diagnosis (N=32, 53%) compared to solid tumor malignancy (N=33,37%) (N=55,61%)(N=70,78%), respectively (all p <0.05). The EORTC-INFO25 at baseline revealed hematologic patients had received less information on sexual side effects of treatments (N=7, 14%) compared to solid tumor patients (N=30, 35%; p=0.004), and reported a lower score of treatment information (50 vs 59; p=0.04). Pre and Post Analysis: Of the 150 initial participants, 81 completed the pre and post-convention surveys (54%). Post-symposium, significant improvement defined as the proportion of participants reporting "quite a bit" or "very much" understanding was noted of disease (pre 75% vs post 89%), stress management (pre 56% vs post 69%), maintain relationships (pre 60% vs post 75%) and pain management (pre 33% vs post 51%)(p-value<0.05). The desire for increased information decreased post-symposium regarding all 9 topics, with significant decreases noted in disease, treatment options and side effects, legal issues and stress management. The EORTC INFO25 analysis revealed a decrease in the reported desire for more information (mean; pre 70 vs post 53, p-value <0.05) Discussion: Cancer patients have a variety of information needs. A patient centered educational conference was able to produce significant improvement in understanding in 4 of 17 topics (24%), including general disease, stress and pain management, and relationship maintenance that was durable at 3 months. At least some improvement in understanding was noted in 10 of 17(59%) additional topics. Knowledge deficit improved in all 9 topics assessed, significantly in five. Cancer patient knowledge needs are varied, and likely evolve over time as a patient progress through stages of disease and treatment. Education should re-evaluate and redistribute information to cancer patients over the course of treatment and survivorship. Disclosures Mikhael: Abbvie: Research Funding; Celgene: Research Funding; Sanofi: Research Funding; Onyx: Research Funding. Dueck:Bayer: Honoraria. Mesa:Novartis: Consultancy; Ariad: Consultancy; Promedior: Research Funding; Galena: Consultancy; Incyte: Research Funding; Celgene: Research Funding; CTI Biopharma: Research Funding; Gilead: Research Funding.