"God is going to help me get through this": spirituality perspectives from Hispanic adolescent and young adult cancer survivors.

PURPOSE: Describe spirituality's role in a sample of Hispanic adolescent and young adult (AYA) cancer survivors. METHODS: This phenomenology-informed 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 who completed cancer treatments 2-5 years ago were virtually recruited for participation. 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 (mean age 30.2, SD = 4.5) years 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 (80%) participants' language preference was Spanish, while two (20%) participants' language preference was 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.

Home-Based Palliative Care: Perspectives of Chronic Obstructive Pulmonary Disease Patients and Their Caregivers.

BACKGROUND: Home-based palliative care (HBPC) is an important aspect of care for patients with moderate to advanced stages of chronic obstructive pulmonary disease (COPD) and their caregivers. HBPC provides symptom management, advanced care planning and goals of care conversations in the home, with the goal of maximizing quality of life and minimizing health care utilization. There is a gap in the knowledge of how the patients with COPD and their caregivers experience HBPC. The overall purpose of this study is to describe which aspects of HBPC were the most meaningful to patients with COPD, and their caregivers. METHODS: Through a descriptive design with narrative analysis methodology, we interviewed COPD patients and their caregivers to investigate their experience of HBPC received in the 30 days post hospitalization for a COPD exacerbation. A thematic analysis was conducted and the patient and caregiver interviews were analyzed in dyad using thematic analysis. RESULTS: A total of 10 dyads were interviewed. Patients and their caregivers perceived 3 times as many facilitators as barriers of receiving home-based palliative care in the 30 days post hospitalization for a COPD exacerbation. The outcomes of this study provide information that describes the aspects of HBPC that patients and their caregivers found most meaningful. CONCLUSION: An understanding of the most meaningful aspects of HBPC from the perspectives of the patients with COPD and their caregivers can be used to inform the development of the best model for HBPC for this patient population.

Development and testing of a goals of care intervention in advanced heart failure.

AIM: The purpose of this paper is to describe the conceptual framework for a goals of care (GoC) intervention, elements, and findings of intervention feasibility, acceptability, and benefits from both patients with heart failure (HF) and their providers. BACKGROUND: Receiving care at a mechanical circulatory support center for advanced HF offers new opportunities for treatment, making the implementation of a GoC intervention timely and crucial in helping patients determine next steps in HF treatment. METHODS: The GoC intervention was designed using a self-management framework, incorporating the concepts of self-efficacy, patient activation, and patient motivation. At the conclusion of the study, open-ended exit interviews were conducted with patients and providers. Content analysis was used to derive the feasibility, acceptability, and benefits of the intervention. RESULTS: Forty-one patients with HF, with average age 58.2±11.3years, LVEF=30.3±9.7%, and New York Heart Association Functional Class (NYHA FC)=2.4±0.8, and nine HF providers participated in the study. Patient benefits from the intervention included enhanced communication with their provider and family members, increased confidence to have a conversation with the provider, and refreshed HF knowledge. Provider benefits from the intervention were facilitating a conversation with the patient and learning new information about the patient's goals and values. CONCLUSION: The GoC intervention provides an avenue to align patient goals and values with treatment choices in the context of advanced heart failure, so that patient quality of life is enhanced and costs of care can be reduced.

Is There Hope? Is She There? How Families and Clinicians Experience Severe Acute Brain Injury.

BACKGROUND: Patients with severe acute brain injury (SABI) raise important palliative care considerations associated with sudden devastating injury and uncertain prognosis. OBJECTIVE: The goal of this study was to explore how family members, nurses, and physicians experience the palliative and supportive care needs of patients with SABI receiving care in the neuroscience intensive care unit (neuro-ICU). DESIGN: Semistructured interviews were audiotaped, transcribed, and analyzed using thematic analysis. SETTING/SUBJECTS: Thirty-bed neuro-ICU in a regional comprehensive stroke and level-one trauma center in the United States. We completed 47 interviews regarding 15 patients with family members (n = 16), nurses (n = 15), and physicians (n = 16). RESULTS: Two themes were identified: (1) hope and (2) personhood. (1) Families linked prognostic uncertainty to a need for hope and expressed a desire for physicians to acknowledge this relationship. The language of hope varied depending on the participant: clinicians used hope as an object that can be given or taken away, generally in the process of conveying prognosis, while families expressed hope as an action that supported coping with their loved one's acute illness and its prognostic uncertainty. (2) Participants described the loss of personhood through brain injury, the need to recognize and treat the brain-injured patient as a person, and the importance of relatedness and connection, including personal support of families by clinicians. CONCLUSIONS: Support for hope and preservation of personhood challenge care in the neuro-ICU as identified by families and clinicians of patients with SABI. Specific practical approaches can address these challenges and improve the palliative care provided to patients and families in the neuro-ICU.