Top Ten Tips Palliative Clinicians Should Know About Rural Palliative Care in the United States.

Palliative care improves outcomes, yet rural residents often lack adequate and equitable access. This study provides practical tips to address palliative care (PC)-related challenges in rural communities. Strategies include engaging trusted community partners, addressing cultural factors, improving pediatric care, utilizing telehealth, networking with rural teams including caregivers, and expanding roles for nurses and advanced practice providers. Despite complex barriers to access, providers can tailor PC to be patient-centered, respect local values, and bridge gaps. The "Top 10" format emphasizes the relevant issues to enable clinicians to provide optimal care for people from rural areas.

Palliative care needs and preferences of older adults with advanced or serious chronic illnesses and their families in rural communities of Indiana, USA.

PURPOSE: To explore the palliative care needs and preferences of older adults with advanced or serious chronic illnesses and their families. Also, to propose strategies to promote supportive palliative care in the rural communities of Indiana, USA. METHOD: We conducted qualitative interviews to gather rural caregivers' experiences of palliative care. Recruitment was done in collaboration with community partners using social media, flyers, emails, invitations, and word-of-mouth. A purposive sample of family caregivers was obtained. All the interviews were conducted online. The average interview was 30-45 minutes. Data were analyzed using a thematic analysis approach. FINDINGS: Our findings showed 6 major themes that indicated several palliative care needs and preferences of older patients and their families in rural communities that include: (1) difficulties in pain and symptom burden; (2) perceived discrimination and lack of trust; (3) longer distances to care facilities; (4) difficult conversations; (5) caregiving burden; and (6) use of telehealth in a rural palliative care context. CONCLUSION: Rural family caregivers experience several social inequities and disparities causing a lack of access to and low utilization of palliative care. All these disparities cause several challenges for patients and their families trying to manage serious illnesses and die in place with peace and comfort. Inadequate access and lack of resources cause pain and distress for both patients and their families. Provider education and trainings, initiating early palliative care models, integrating behavioral health in palliative care, and using culturally congruent care delivery approaches in support of community partners can improve palliative care services in rural communities.

Nursing and Medical Students' Responses About End-of-Life Communication Reveal Educational Opportunities for Spiritual Care.

BACKGROUND: The need for improved spiritual care education is a national directive, prompting many nursing and medical education programs to respond with spiritual curriculum. This article reports on research that tested an educational intervention to enhance nursing and medical students' understanding of end-of-life communication with families. METHOD: This mixed-methods study included three reflection questions to ascertain students' attitudes about their own death and dying. RESULTS: Many of the students' responses were spiritual in nature. Findings revealed two important misconceptions about death and one educational strategy that can be used to help students identify potential sources of spiritual discomfort in clinical situations. CONCLUSION: The findings offer a glimpse into the attitudes and beliefs of nursing and medical students that could influence how they view and deliver spiritual care, contributing to the evidence base for spiritual care education and curriculum. [J Nurs Educ. 2023;62(11):601-605.].

Structural equation model of coping and life satisfaction of community-dwelling older people during the COVID-19 pandemic.

BACKGROUND: COVID-19 put older individuals at high risk for morbidity and mortality, isolation, reduced coping, and lower satisfaction with life. Many older adults experienced social isolation, fear, and anxiety. We hypothesized that successful coping with these stressors would maintain or improve satisfaction with life, a crucial psychological outcome during the pandemic. Our study investigated relationships between older people's coping and life satisfaction during the pandemic and their optimism, sense of mastery, closeness with spouse, family, and friends, and vulnerabilities from frailty, comorbid diseases, memory problems, and dependencies in instrumental activities of daily living (IADL). METHODS: The study was based on a special COVID-19 sample of 1351 community-dwelling older adults who participated in the 2020 Health and Retirement Survey. A comprehensive structural equation modeling was used to test direct and indirect effects, with life satisfaction as the main outcome and coping as a mediator between the other variables and coping. RESULTS: Most survey respondents were female and between the ages of 65-74 years. They averaged 1.7 chronic conditions, one in seven was frail, about one-third rated their memory as fair or poor, and about one in seven reported one or more difficulties in IADL. As hypothesized-older people with increased sense of mastery and optimism were better able to cope and had greater life satisfaction. In addition, close relationships with friends and with other family members besides the spouse/partner or children contributed to more successful coping, while the interpersonal closeness of all types contributed directly to greater life satisfaction. Finally, older people with more IADL limitations reported greater difficulty coping and lower life satisfaction, and those older people who were frail or had multiple comorbid diseases reported lower life satisfaction. CONCLUSIONS: Optimism, sense of mastery and closeness with family/friends promotes coping and life satisfaction, whereas frailty and comorbidities make coping more challenging and lead to lower life satisfaction particularly during a pandemic. Our study improves on prior research because of its nationally representative sample and formal specification and testing of a comprehensive theoretical framework.

Qualities of the dying experience of persons who access medical assistance in dying: A scoping review.

Defining a "good death" is complex and grounded in diverse cultural, social, and personal factors. Although there is a significant body of literature exploring the broad concepts of death and dying, there is a dearth in literature that has explored what constitutes a good death for persons undergoing assisted dying such as Medical Assistance in Dying (MAiD). In this scoping review of 19 articles, we explore dying experiences and what a good death entails for people accessing MAiD. Understanding personal values and ideas about positive dying experiences can guide patients, care partners, and clinicians in their preparation toward, and facilitation of, a good death experience particularly among persons who access MAiD.

Reflective Journaling as Preparation for Spiritual Care of Patients.

Death is a human experience; however, an understanding of dying, grief, and loss continues to elude many cultures, even more elusive is the understanding of complicated grief for families and burnout for providers caring for the dying patient and their families. To prepare students taking care of dying patients and their families, the Catalyzing Relationships at the End of Life program included addressing perceptions of one's own death through journal reflection. The Catalyzing Relationships at the End of Life program utilized journals to ascertain student understanding of issues surrounding family communication at the end of life. Journal reflections were embedded in an online learning management system and utilized structured prompts as the journaling method. These prompts addressed what students desire for their own family relationships during their own death. Results from the qualitative descriptive analysis included 4 themes: meaning, beliefs, connections, and good death. Reflections about their own death were a powerful experience for student participants. Although questions about spirituality were not specifically asked, themes relating to spirituality emerged from the data.

Testing a Pediatric Palliative Care Education Workplace Intervention.

Pediatric palliative care is aimed at pain and symptom management, reducing hospitalization, promoting psychosocial care, and improving quality of life for children with serious illness. As a professional caregiver, nurses play an essential role in the provision of appropriate pediatric palliative care in clinical care settings. The purpose of this quality improvement study was to improve pediatric nurses' awareness and perceptions of palliative care. A 1-group pretest-posttest design was used in the study. A 20-minute education video was used as an intervention to enhance nurses' awareness and perception about pediatric palliative care. Twenty-one pediatric medical-surgical nurses participated in the intervention. Posttest results indicated raised awareness about palliative care, more nurses were able to define palliative care correctly, and nurses were more likely to encourage a palliative care consult. Future studies are needed using larger sample sizes with robust measures to further evaluate the effectiveness of the intervention on enhancing pediatric palliative care awareness among nurses.

"Hard to Say Goodbye Over iPad": Experiences of Palliative Care Providers and Lessons Learned During the COVID-19 Pandemic in Rural Communities of Indiana, United States.

The need for palliative care (PC) has gained increased attention during the COVID-19 pandemic. Palliative care adds an extra layer of support and care for patients with advanced chronic illnesses and their families. Because of pandemic restrictions, access and provision of PC services were challenging and resulted in huge suffering and caregiving burden among patients with advanced chronic illnesses and their families, especially those living in smaller towns and rural communities. The study aimed to describe the impact of COVID-19 on PC services and examine various ethical, moral, and practice issues and challenges experienced by rural providers. Using a community-based participatory research approach, a purposive sample of health care providers (n = 15) was obtained from smaller towns and rural communities in Indiana, United States. Online individual interviews were used for data collection. Thematic analysis showed several concerns including restricted visitation, communication challenges, "hard to say goodbye over iPad", moral distress among providers, and preference for home hospice services. Findings call for strategies to implement best PC practices and programs to support providers and families in smaller towns and rural communities.

Palliative care for rural growth and wellbeing: identifying perceived barriers and facilitators in access to palliative care in rural Indiana, USA.

With the growing aging population and high prevalence of chronic illnesses, there is an increasing demand for palliative care. In the US state of Indiana, an estimated 6.3 million people are living with one or more chronic illnesses, a large proportion of them reside in rural areas where there is limited access to palliative care leading to major healthcare inequities and disparities. This study aims to identify common barriers and facilitators to access palliative care services in rural areas of Indiana from the perspectives of healthcare providers including clinicians, educators, and community stakeholders. Using a community-based participatory approach, a purposive sample of palliative care  providers (n = 15) in rural areas of Indiana was obtained. Penchansky and Thomas (1981) theoretical framework of access was used to guide the study. A semi-structured individual in-depth interview guide was used to collect the data. All the interviews were conducted online, audio-recorded, and transcribed. Barriers to palliative care  include: misconceptions about palliative care as an underrecognized specialty; lack of trained palliative care providers; late involvement of inpatient palliative care and community hospice services; inadequate palliative care education and training; financial barriers, attitudes and beliefs around PC; and geographical barriers. Facilitators to palliative care include financial gains supporting palliative care growth, enhanced nurses' role in identifying patients with palliative care needs and creating awareness and informing the community about palliative care. Robust education and awareness, enhancing advanced practice nurses' roles, increasing funding and resources are essential to improve the access of palliative care services in the rural communities of Indiana.

Examining Barriers and Facilitators to Palliative Care Access in Rural Areas: A Scoping Review.

BACKGROUND: Despite the growth of palliative care (PC), access to PC remains challenging for rural Americans living with chronic diseases. Given the demand and benefits of PC, a comprehensive view of PC access would inform policymakers in developing PC services in rural areas. OBJECTIVE: This scoping review aimed to understand the barriers and facilitators to PC access in rural areas from the voices of service users and service providers during the past decade. METHODS: A scoping literature review was conducted from 2010 to 2020 using MEDLINE, CINAHL, and PsychINFO databases. Results: Twenty-eight studies met inclusion criteria. Barriers to PC access in rural areas mostly arose in structural issues: (1) the inadequate knowledge and awareness of PC among both service users and providers and (2) the poorly structured PC system. Other barriers included communication gaps/challenges between providers and patients/families and cultural barriers. The facilitators mainly originated in patients/families' connectedness with local providers and with other social networks such as friends. CONCLUSIONS: These findings highlight the need for funding support to increase provider competency, service availability and accessibility, and the public knowledge and awareness of PC in rural areas. A holistic and tailored PC model that standardizes care delivery, referral and coordination, including family caregiver support programs, can improve care access. Future practice and research are warranted to implement and evaluate innovative approaches, such as a coordinated community-based approach, to the successful integration of PC in rural communities.

Nurturing Spiritual Resilience to Promote Post-disaster Community Recovery: The 2016 Alberta Wildfire in Canada.

The 2016 Alberta wildfire, the largest insured natural disaster in Canada, led to a mass evacuation of residents of Fort McMurray, a small city in northern Alberta. The wildfire resulted in significant damages to housing and community infrastructure. The entire community was displaced for several weeks. Post-disaster, community members experienced individual and collective trauma, and other negative mental health impacts in response to the significant losses and grief they endured. Spirituality has been found to be a major protective factor in facilitating resiliency and recovery following the experience of disaster. Nonetheless, little focus has been directed toward how spirituality can strengthen and empower community capacity and growth during post-disaster recovery. Our study explored various meanings and concerns, along with tools and strategies that helped to nurture spiritual resilience and well-being among residents of Fort McMurray following the Alberta wildfire. Data were collected through interviews and focus group discussions with community influencers working to support long-term recovery efforts in the city. Participants identified a number of spiritual resources such as a strong sense of belonging, a shared positive outlook, faith and hope, compassion, and sense of gratitude, which contributed to increased resilience and positive health and well-being and helped them to support families and communities in the post disaster recovery period. Our findings indicate that spiritual values and beliefs can play a significant role in building resilience and promoting individual and communal healing and recovery post-disaster. These findings have important implications for post-disaster recovery strategies, as they highlight the need to ensure supports for interventions and initiatives that strengthen a collective sense of identity and social cohesion, informed by communal norms and beliefs, including programs and resources which support opportunities for reflexivity to foster shared healing and ongoing recovery processes.

Spirituality in Nursing and Health: A Historical Context, Challenges, and Way Forward.

This article aims to share the historical context of spirituality in nursing, meanings and expressions of spirituality, and different models of spirituality along with its significance in nursing education and practice. Several challenges and tools for the successful integration of spirituality in education and practice are also discussed.

"I Need Presence and a Listening Ear": Perspectives of Spirituality and Spiritual Care Among Healthcare Providers in a Hospice Setting in Pakistan.

This paper aims to describe how healthcare providers perceived spirituality and spiritual care while caring for dying patients and their families in a hospice setting in Karachi, Pakistan. Using a qualitative interpretive description design, individual in-depth interviews were conducted among healthcare providers. Thematic analysis approach was used for data analysis. Spirituality and spiritual care were perceived as shared human connections, relating to each other, acts of compassion, showing mutual respect while maintaining dignity in care and empowering patients and families. Developing spiritual competency, self-awareness, training and education, and self-care strategies for healthcare providers are essential components promoting spiritual care in a hospice setting.

Methodological and ethical challenges while conducting qualitative research on spirituality and end of life in a Muslim context: a guide to novice researchers.

Abstract Spirituality could be understood as a personal belief, a relation with sacred, divine experience, a sense of purpose and meaning towards life, authenticity and connectedness. It is a continually evolving, highly complex, contextual, subjective, and sensitive construct. A continuous development is seen around understanding about spirituality and spiritual concepts, such as spiritual experiences, spiritual pain and spiritual distress, especially among patients and families at the end of life. The concepts, values, attitudes, and beliefs around spirituality, spiritual needs and expressions vary among different individuals, cultures, and religions. There is a dearth of literature around spirituality, especially among Muslim patients and families at the end of life. The complexities around the concept of spirituality in the literature raise several ethical and methodological concerns for a novice researcher while planning and conducting a study on spirituality during end-of-life care in a hospice setting, especially among a Muslim population. This paper aims to share some of the methodological and ethical challenges that can be faced by qualitative researchers while conducting research around spirituality and end-of-life care in an Islamic/Muslim context. Major challenges include defining the term spirituality, spirituality and culture, communication, power relations, language and translation, recruitment and selection of the participants, emotional distress, and reflexivity and reciprocity. Having an in-depth understanding of these challenges can guide researchers to address these issues adequately in their spirituality research in a Muslim context.

Rise Above: Experiences of Spirituality Among Family Caregivers Caring for Their Dying Family Member in a Hospice Setting in Pakistan.

Family caregivers experience multiple transitions, resolutions, loss, and grief where their search for meaning becomes evident. Spirituality is an important dimension of palliative care, yet little attention has been given to this important aspect of spirituality especially among the family caregivers in a hospice setting. The study aimed to bring the hidden voices of family caregivers, their own spiritual experiences caring for their dying patients in a hospice setting, to guide and direct the care practices of health care professionals. An interpretive descriptive approach guided the study using a purposive sample of 18 family caregivers from a hospice in Karachi, Pakistan. Major themes were family love, attachment, and belongingness; honoring family values and dignity; acts of compassion and selfless service; and seeking God's kindness and grace. Spirituality enabled family caregivers to uncover meaningful engagement and provided strength and peace while serving a dying family member in challenging caregiving situations such as adversity and limited resources. They highly valued the love, respect, and honor of the family; showed compassion; believed in God's blessings; and experienced spiritual growth and self-transcendence. Spirituality was found to be a major resource of coping among family caregivers. Health care professionals need to integrate spirituality while developing family-centered interventions in hospice care.

Spirituality among family caregivers in palliative care: an integrative literature review.

BACKGROUND: Family caregivers experience spiritual and existential concerns while caring for their terminally ill family members. AIM: To evaluate and synthesise studies on spirituality among family caregivers in palliative care. DESIGN: An integrative literature review of peer-reviewed articles published between 2000 and 2016. SAMPLE: Participants were family caregivers (parents, spouses, relatives or friends) caring for an adult (age>18 years) family member with a terminal illness in a palliative care setting. RESULTS: Data from 26 published research papers were systematically analysed. Five themes were identified regarding spirituality and family caregiving: a close and meaningful connection, spirituality as a way of coping, spiritual needs and expressions among family caregivers, spirituality to transcend fears, and spirituality in family caregivers' decision-making. IMPLICATIONS FOR PRACTICE: Nurses are encouraged to explore the spirituality and spiritual experiences of family caregivers to support their spiritual wellbeing while caring for their terminally ill family members.

Community mental health initiatives in Pakistan.

AIM: To identify mental health needs in local communities, and provide and evaluate nurse-led services to promote community mental health in Karachi, Pakistan. METHOD: Using an action research approach, mental health nurses implemented activities to promote mental health and psychiatric rehabilitation in 15 urban communities in Karachi. The activities were planned and implemented in collaboration with a community-based social welfare organisation. FINDINGS: Community mental health interventions were implemented by a multidisciplinary team including nursing educators and postgraduate nursing students. Positive transformation of the mental health of clients in the community was found. CONCLUSION: The challenges in identifying, diagnosing and rehabilitating clients with mental health needs in the community in Pakistan is acknowledged, and the benefits of enhanced support for clients and their families provided by community mental health nurses are described.

Complementary and alternative medicine in oncology nursing.

Use of complementary and alternative medicine (CAM) has increased globally, particularly among oncology patients. This study investigated the knowledge, experience and attitudes of oncology nurses towards CAM. A quantitative study was conducted in tertiary care hospitals in Karachi, Pakistan, where 132 oncology nurses were surveyed. The survey revealed that more than 50% of nurses had never heard about many of the CAM therapies used in Pakistan. Approximately 65% of the nurses had knowledge about prayer and less than 30% had experience of CAM education or training. In addition, the majority of nurses had seen patients using CAM and felt that their health status could be enhanced with the use of CAM. This study showed that oncology nurses had a positive experience of and attitude towards CAM, although they needed to enhance their knowledge of it to maximise patient satisfaction and quality of care.

The role transition of nurses in a university teaching hospital in Pakistan.

In a private university teaching hospital in Pakistan, a study using grounded theory design was conducted among new nursing graduates to elicit their transitional experiences from a student to a staff nurse role. Four major themes emerged highlighting the core category of "sailing forward": stepping into the new role, initial adjustment, support systems, and resolution phase. A substantive theory on role transition was the outcome.