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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.
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Sobreviventes de Câncer , Hispânico ou Latino , Espiritualidade , Humanos , Feminino , Sobreviventes de Câncer/psicologia , Masculino , Hispânico ou Latino/psicologia , Adulto , Adolescente , Adulto Jovem , Projetos Piloto , Esperança , Neoplasias/psicologia , Neoplasias/terapia , Pesquisa Qualitativa , Adaptação PsicológicaRESUMO
OBJECTIVES: Considering the ethnic, racial, and cultural diversity in the U.S., we aim to explore the experiences of healthcare chaplains as they provide culturally sensitive care to diverse patients and their families. METHODS: This is a qualitative study. Individual interviews were conducted with 14 healthcare chaplains recruited from 3 U.S. chaplaincy organizations. RESULTS: Thematic analysis with constant comparison yielded 6 themes in the chaplains' experiences: (1) the diverse roles of chaplains; (2) their high levels of comfort in working with diverse populations, attributed to cultural sensitivity and humility training; (3) cues for trust-building; (4) common topics of diversity, equity, and inclusion discussed; (5) gaps in chaplaincy training; and (6) the importance of collaboration and negotiation with healthcare professionals to accommodate cultural needs. SIGNIFICANCE OF RESULTS: This research highlights the valuable role of chaplains in providing culturally sensitive care and suggests areas for improving chaplaincy training and education to better serve diverse patient populations.
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BACKGROUND: A cancer diagnosis may lead to existential despair but potentially also to perceived inner growth. This growth may be fostered through meaningful connections with others. We sought to describe existential and related psychosocial outcomes and their association with a sense of connection with others in individuals with gynecological and breast cancers. METHODS: We used cross-sectional data from two ongoing cohort studies of gynecologic (N = 236) and breast (N = 62) cancer survivors at the University of Minnesota. We summarized self-reported post-traumatic growth (PTG), sense of meaning, peace, spirituality, hopelessness, loneliness, and three exploratory measures of sense of connections with others, and used multivariate linear regression models to describe the associations between them. RESULTS: Hope, sense of meaning, peace, and spirituality were generally high among participants, but PTG and loneliness scores varied more. Sense of connection with others was consistently associated with greater PTG and decreased loneliness with medium effect sizes: for example having positive interactions with most/all versus nobody on one's medical team, PTG (coefficient 10.49, 95% CI: 4.10, 16.87, Cohen's D 0.44); loneliness (coefficient - 0.85, 95% CI: - 1.36, - 0.34, Cohen's D 0.43). Those who knew someone in a similar life situation felt a strong sense of connection with such a person; however, 28% of participants had not met anyone in a similar situation. CONCLUSIONS: There may be untapped opportunities to nurture beneficial existential outcomes in cancer survivors. Potential interventions include connecting survivors with one another and creating opportunities for more authentic patient-provider relationships, for example, within palliative care.
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Neoplasias da Mama , Sobreviventes de Câncer , Adaptação Psicológica , Neoplasias da Mama/psicologia , Estudos Transversais , Existencialismo , Feminino , Humanos , Sobreviventes/psicologiaRESUMO
Palliative care chaplains conduct spiritual assessments for those within their care. This narrative review examined the literature concerning existing spiritual assessment models developed or designated for palliative care chaplain use. The literature review was performed using four databases, including a hand search of references due to the variability of keywords used within the spiritual care literature. Five spiritual assessment models were identified. The analysis of the models focused on three areas: (1) Foundational basis, (2) Spiritual needs, and (3) Structural frameworks. Published spiritual assessment models for palliative care chaplain use are variable in how each one was formed, how each tool describes and structures spiritual care needs, and how the models are implemented within their respective contexts. The PC-7 advances the field, especially through its mixed methods approach. Future validation and reliability research is needed as well as investigations concerning which models are taught by chaplain educators and used by palliative care chaplains.
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Prison populations are rapidly aging. Persons in prison age quicker and suffer more chronic illness and disability than their nonincarcerated peers, posing challenges to caring for prisoners who are chronically ill and dying. The goal of our study was to describe state prisons' practices and policies addressing persons in prison with advanced chronic and life limiting illness through a national web-based survey of state-level prison health care professionals. In particular, we focused on advanced care planning, use of health care directives, decision-making about goals of care, including life sustaining treatments, The response rate was 22% for a sample size 152 completed surveys. The average age of respondent was 52 years; majority were female and Caucasian, and had worked in corrections more than 8 years. Nearly half were registered nurses. Most reported their prison did not have a dedicated end-of-life care program and only 11% offered a peer-care program. However, two-thirds indicated their facility provided the opportunity to designate a health care agent with physicians most likely responsible for facilitating completion of a health care directive. It is evident the care of persons aging and dying in prison is complex and requires further investigation addressing staff and prison population education, ethics guidelines for care, compassionate release, and advance care planning. This study suggests that hospice and palliative care professionals could collaborate with corrections professionals and national organizations to provide innovative education and support to enhance the humane care of this vulnerable population.
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Planejamento Antecipado de Cuidados , Pessoal de Saúde , Prisões , Assistência Terminal , Humanos , Planejamento Antecipado de Cuidados/organização & administração , Feminino , Masculino , Pessoa de Meia-Idade , Prisões/organização & administração , Assistência Terminal/organização & administração , Adulto , Pessoal de Saúde/psicologia , Diretivas Antecipadas/estatística & dados numéricos , Tomada de Decisões , Prisioneiros/psicologia , Prisioneiros/estatística & dados numéricos , Idoso , Estados Unidos , Inquéritos e Questionários , Cuidados Paliativos/organização & administraçãoRESUMO
Identifying and attending to the existential needs of persons with serious illness and their care partners are integral to whole-person palliative care (PC). Yet, many PC clinicians, due to individual factors and wider systemic barriers, are ill-prepared and under-resourced to navigate the existential dimension. In this article, written from clinical, research, and lived experiences, we offer tips to empower PC clinicians to understand, recognize, and respond to patients' and care partners' existential experiences by leveraging their existing skills, collaborating closely with colleagues, exploring their own existential experience, and implementing evidence-based interventions. We propose that by prioritizing existential care within PC, we can shift the culture of health care to better affirm the humanity of both patients and clinicians.
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The COVID-19 pandemic significantly impacted North American health care chaplains' modes of work and emotions. To capture the experiences of health care chaplains across the United States, 30 Board Certified (or eligible) chaplains were asked to keep a weekly narrative journal of their experiences and emotions during the pandemic from April of 2020 through June of 2020. Twenty-one chaplains submitted their journals for qualitative analysis, amounting to over 90,000 words of chaplain reflection containing rich, descriptive, and often personal stories of health care chaplains. Journals were analyzed using hermeneutic phenomenological methodology. The overarching patterns identified included: The World of Chaplaincy, Policies/Procedures/Visitation, Staff Care, Rituals, Chaplain Emotional Responses, Coping, and Racism. A significant finding was the resiliency and creativity of chaplains despite the rapid changes, uncertainty, and fear brought on by the pandemic. The results further suggest that journaling is a feasible and acceptable method in chaplaincy research.
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COVID-19 , Serviço Religioso no Hospital , Assistência Religiosa , Humanos , Estados Unidos , Clero/psicologia , Pandemias , Narração , Atenção à Saúde , Assistência Religiosa/métodos , EspiritualidadeRESUMO
Background: As thousands of patients, often with complex care needs, were hospitalized due to the coronavirus disease 2019 (COVID-19) pandemic, demand for palliative care was magnified. Part of hospitals' palliative care teams, palliative chaplains delivered emotional support while specializing in the religious, spiritual, and the existential aspects of care. With COVID-19 containment measures increasing isolation and disrupting supportive family connections, the emotional and spiritual well-being of the patients and families were unclear. Objectives: Through the unique perspectives and insights of inpatient palliative care chaplains, we sought to qualitatively capture their perceptions and the patient-family experience as the pandemic emerged. Setting/Subjects: This investigation was based in the United States. Design: Individual semistructured telephone interviews (n = 10) were conducted between April 22 and May 6, 2020. Through thematic analysis, analyses progressed through initial coding sessions, refining a codebook, identifying representative quotes, and recognizing themes. Results: Five themes were identified and described through the coding process and recognizing representative quotes: (1) visitor restrictions-patients, (2) visitor restrictions-families, (3) religious struggle, (4) spiritual distress, and (5) decision making. Conclusions: Inpatient palliative care chaplains were active interprofessional partners caring for patients and families as the uncertainty of the pandemic unfolded. The crises of this pandemic magnified chaplain specialization as they attended to emotional, spiritual, and religious suffering and as well as complex decision making with patients and their family members.
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COVID-19 , Clero , Clero/psicologia , Família , Humanos , Cuidados Paliativos/psicologia , Espiritualidade , Estados UnidosRESUMO
Assessment of spiritual suffering and provision of spiritual care are a central component of palliative care (PC). Unfortunately, many PC clinicians, like most medical providers, have received limited or superficial training in spirituality and spiritual distress. This article, written by a group of spiritual care providers, and other PC and hospice clinicians, offers a more in-depth look at religion and spirituality to help to enhance readers' current skills while offering a practical roadmap for screening for spiritual distress and an overview of partnering with colleagues to ensure patients receive values-aligned spiritual care provision.
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Cuidados Paliativos na Terminalidade da Vida , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Terapias Espirituais , Humanos , Cuidados Paliativos , EspiritualidadeRESUMO
This article reflects a project to create, refine, and use a palliative care specific spiritual assessment, with the intent to implement its use for both an inpatient Palliative Consult Service (PCS) and a Spiritual Health Service (SHS) team. Extensive meetings with these services to confirm a shared understanding of the use of this spiritual assessment to facilitate communication with PCS through consistent language about the patient's story, suffering, spirit, and sense-making. Following a pilot phase of using this palliative care spiritual assessment, five presentations were shared with the SHS team to explore using this assessment. Although the SHS team decided not to use its content, these presentations spurred dialogue toward what was to become a SHS standardized documentation process, eventually called data, intervention, outcome, plan (DIOP).