Bennett, Claire

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.