Church Matters: Education About Advance Care Planning and End-of-Life Care in Black Churches.

For many African American adults, the church has the potential to be a place to receive education about advance care planning (ACP). The current study was conducted to (1) identify the frequency of ACP conversations and caregiving and (2) evaluate interest in church-placed end-of-life (EOL) care education. Data were collected from parishioners in 2 African American churches in an urban city in the mid-Atlantic region of the United States. Individuals older than 50 years reported a higher frequency of caregiving ( P < .001) and were more likely to have talked to someone about EOL care ( P < .001) than individuals younger than 50 years. Nearly all respondents considered EOL conversations "important" or "very important" (99.1%) and wanted more information about EOL conversations available via the church (95.8%). Our findings suggest EOL conversations are happening within families and with health care providers, but they are not documented in ways (eg, in writing) that research has focused on previously. Future EOL education will focus more on the importance of documenting and sharing EOL care wishes with family and health care professionals.

End-of-Life Care for Transgender Older Adults.

As the number of transgender older adults increases, the need for respectful and inclusive end-of-life (EOL) care for this population is becoming more apparent. Aging transgender adults often face discrimination, inadequate access to care, and poor quality of care. In response, we organized a think tank that invited participation from 19 transgender older adults, scholars in EOL care, and palliative care providers in the United States to generate recommendations for EOL care for transgender older adults. Subsequently, we conducted a qualitative descriptive exploration of the written record of think tank discussions for the purpose of identifying key EOL care considerations for transgender older adults. We identified four themes that highlight the importance of understanding the experiences of transgender older adults for the advancement of future research, policy, and education initiatives aiming to ensure inclusive and equitable provision of EOL care by nurses and other clinicians for this population.

Fifteen-minute guide to managing oligoarticular juvenile idiopathic arthritis.

Juvenile idiopathic arthritis (JIA) is the most common chronic rheumatic disease affecting children and young people today. However, it is not a single disease entity, but an umbrella term that gathers together a heterogeneous collection of complex, chronic inflammatory conditions with oligoarticular JIA the most common form in both Europe and North America. Due to its relative rarity in daily practice and potential to mimic other conditions, oligoarticular JIA can present a diagnostic and management challenge to healthcare professionals in both primary care and general paediatrics. The aim of this article is to provide a summary of the key aspects of diagnosis, investigation and management of this condition, with the hopes of building clinicians' confidence when facing a possible case of oligoarticular JIA.

Palliative Care Practices in a Rural Community: Cultural Context and the Role of Community Health Worker.

In many communities in South Africa, no palliative care (PC) services exist. One strategy for increasing access to PC services is to integrate Community Health Workers (CHWS) into PC practice. The purpose of the study was to describe the palliative care practices of CHWS. A qualitative, explorative descriptive design guided the study. Thirty-four people participated in the study. Mean age of the participants was 53.7 years old, 98% were female, and 100% were affiliated with with non-governmental organizations. The mean numbers of years in practice was 10.2 and 36.5 for the CHWS and professional nurses respectively. After analysis of the data three major themes emerged: the influence of the Vha-venda cultural context, HBC palliative care practices, and the lack of palliative care resources & supplies. Despite a lack of resources, CHWS play an important role in PC by providing physical comfort, providing spiritual comfort, educating patient-family, and supporting medication management.

Advance Care Planning and End of Life Care Literacy Initiatives in African American Faith Communities: A Systematic Integrative Review.

African Americans (AA) experience health inequalities that affect their utilization of advance care planning (ACP) and hospice and palliative care at end of life (EOL). Faith-based health promotion models may be applicable to ACP and EOL care literacy for this population. The purpose of this integrative review was to examine the literature highlighting participant responses to ACP and EOL care literacy initiatives in AA faith communities. An integrative literature review was conducted using the following databases: PubMed, CINAHL, Web of Science, and PsychINFO. Eight primary sources met inclusion criteria. Findings from these studies indicate that integration of AA religious beliefs and practices into ACP and EOL care educational programs may enhance the efficacy of these efforts in promoting ACP, advance directive completion, and hospice use. Building trust, creating community partnerships, and involving church leadership in ACP and EOL care literacy promotion efforts serve as important elements to inform future initiatives.

A systematic review of interventions for family caregivers who care for patients with advanced cancer at home.

OBJECTIVE: To examine the characteristics of interventions to support family caregivers of patients with advanced cancer. METHODS: Five databases (CINAHL, Medline, PsycINFO, Web of Science, and the Cochrane Library) were searched for English language articles of intervention studies utilizing randomized controlled trials or quasi-experimental designs, reporting caregiver-related outcomes of interventions for family caregivers caring for patients with advanced cancer at home. RESULTS: A total of 11 studies met the inclusion criteria. Based on these studies, the types of interventions were categorized into psychosocial, educational, or both. The characteristics of interventions varied. Most interventions demonstrated statistically significant results of reducing psychological distress and caregiving burden and improving quality of life, self-efficacy, and competence for caregiving. However, there was inconsistency in the use of measures. CONCLUSIONS: Most studies showed positive effects of the interventions on caregiver-specific outcomes, yet direct comparisons of the effectiveness were limited. There is a lack of research aimed to support family caregivers' physical health. PRACTICE IMPLICATIONS: Given caregivers' needs to maintain their wellbeing and the positive effects of support for them, research examining long-term efficacy of interventions and measuring objective health outcomes with rigorous quality of studies is still needed for better outcomes for family caregivers of patients with advanced cancer.

The Impact of Performing Medical/Nursing Tasks at Home Among Caregivers of Individuals With Cognitive Impairment.

Caregiving for older adults with cognitive impairment can be more difficult as caregivers are required to perform medical/nursing tasks at home. Little is known about medical/nursing tasks and their relationship to caregivers' characteristics and their effects on caregiver burden. Secondary data analyses were conducted with 423 caregivers of individuals with cognitive impairment from the 2015 National Alliance for Caregiving (NAC) and American Association of Retired Persons (AARP) data. In terms of the caregiving context, caregivers who performed medical/nursing tasks lived with the care recipients and provided longer hours of care than caregivers who did not perform medical/nursing tasks. When caregivers delivered medical/nursing tasks, they were 2 times more likely to experience higher levels of caregiver burden. Medical/nursing tasks can exacerbate caregiver burden. Health care providers' explanations of the needs and the benefits of performing medical/nursing tasks, as well as education and training for the tasks, are needed to reduce caregiver burden.

Silent Illumination: A Case Study Exploring the Spiritual Needs of a Transgender-Identified Elder Receiving Hospice Care.

With a growing population of transgender-identified elders in the United States, their unique spiritual end-of-life needs are coming to light. This article presents a case study of a hospice volunteer who used skillful means as an artist to help a transgender-identified woman express her spirituality in the last 6 months of her life. After data analysis, 4 themes emerged related to the expression of spirituality by lesbian, gay, bisexual, transgender, and queer (LGBTQ) elders at end of life. The themes that emerged included (1) the human element in advocacy for spiritual care, (2) the importance of safe spaces for reflection and meditation, (3) the importance of skillful means to work with LGBTQ people, and (4) acknowledgement of gender identity as a spiritual need. This case study serves as a springboard to advance research into the end-of-life needs of LGBTQ elders and the ways in which members of the hospice team can support spiritual care and alleviate suffering for this population.

Exploring the challenges of medical/nursing tasks in home care experienced by caregivers of older adults with dementia: An integrative review.

AIMS: To examine prevalence, types, challenges and the impact of medical/nursing tasks (MNT) on caregivers of older adults with dementia. BACKGROUND: Medical/nursing tasks have been perceived as a professional healthcare role; however, research shows that many caregivers of older adults with dementia perform those tasks in the home, such as giving injections, tube feedings or operation of medical equipment. Little is known about the caregivers' challenges in engaging in these MNT. DESIGN: Integrative review. METHODS: Ovid MEDLINE, CINAHL, PsycINFO and Web of Science databases were searched to explore MNT among caregivers of older adults with dementia who lived in a community setting. Four quantitative and nine qualitative studies published between 1980-2018 were included. Overall, process of the review was guided by PRISMA. RESULTS: About 67% of U.S. caregivers of older adults with dementia performed MNT, including managing multiple medications, wound care and nutritional management. Care recipients' cognitive impairment complicated the provision of those tasks due to their limited cognitive functioning, behavioural changes, comorbidities and complex medication regimen. Insufficient information and training from healthcare professionals as well as caregivers' age and their own health problems made performance of those tasks even more challenging. As a result, caregivers frequently suffered from emotional distress such as worrying, anxiety and sleep disturbance. CONCLUSIONS: Medical/nursing tasks have become one of the daily tasks of caregivers of older adults with dementia within the home. However, the tasks are difficult and complicated, and inadequate support from healthcare professionals may compromise the caregivers' well-being. RELEVANCE TO CLINICAL PRACTICE: Healthcare professionals should provide education and should be aware of caregivers' needs related to MNT. Structured-medical information, skill-based instructions and hands-on training may be beneficial to decrease the caregivers' distress from MNT.

Testicular ischemia in deficiency of adenosine deaminase 2 (DADA2).

BACKGROUND: Deficiency of adenosine deaminase 2 (DADA2) is a rare autosomal recessive autoinflammatory condition. Recognised features include vasculitis predominantly affecting medium sized vessels, livedoid skin rash, central and peripheral nervous system involvement, variable degrees of immunodeficiency, and marrow failure, amongst other clinical presentations. We present the case of a six year old male with DADA2 who presented with acute testicular ischaemia secondary to vasculitis, the first such description in DADA2. CASE PRESENTATION: A six year old male presented acute right-sided testicular pain. His history included transient infantile neutropenia, resolved hepatosplenomegaly, and longstanding livedo racemosa, leading to screening and confirmation of DADA2 caused by homozygous c.139G > C (p.G47R) mutation of ADA2. As his only clinical feature was that of mild livedo racemosa with normal laboratory parameters at diagnosis, he was being actively monitored prior to starting any treatment. At a routine clinic follow-up a 24 h history of testicular pain was noted on systems review. He was afebrile, and his only physical signs were that of moderate livedo racemosa, and tenderness of the right testicle. Laboratory parameters revealed C-reactive protein (CRP) 8 mg/L (reference range [RR] < 20 mg/L); erythrocyte sedimentation rate (ESR) 28 mm/hr. (RR < 10); and serum amyloid A (SAA)5 mg/L (RR < 10). Ultrasound-scan of the scrotum revealed significantly reduced perfusion of the right testes, without torsion. Surgical scrotal exploration confirmed testicular ischaemia without torsion. Histology demonstrated ischaemic seminiferous tubules with intervening haemorrhage and acute inflammatory cells, consistent with vasculitis of the testis as the cause. He was treated with high dose intravenous methyl-prednisolone followed by a weaning course of oral prednisolone, and subcutaneous adalimumab (anti-tumour necrosis factor alpha, anti-TNFα). Repeat ultrasound-scan 3 weeks later revealed good testicular perfusion, with a small area of focal infarction. At last follow-up (11 months post-event) he remained asymptomatic, on treatment with adalimumab. CONCLUSION: The phenotype of DADA2 continues to expand, and we add testicular infarction to the features of DADA2. CRP and SAA cannot be relied on as reliable biomarkers to predict tissue ischaemia and hence who to target for anti-TNFα therapy in DADA2, since these remained steadfastly normal before, during, and after testicular infarction in this case.

Using video education to improve outcomes in heart failure.

BACKGROUND: Heart Failure (HF) guidelines recommend HF self-care education. An optimal method of educating HF patients does not currently exist. OBJECTIVES: To evaluate the effectiveness of supplementing usual HF education with video education and evaluate patients' satisfaction with video education. METHODS: A mixed methods design was used. A convenience sample of 70 patients was recruited from an academic medical center. Participants completed the Atlanta Heart Failure Knowledge Test and the Self-care of Heart Failure Index before and after receiving video education, to measure HF knowledge, self-efficacy, and self-care respectively. Video usage and satisfaction with video education data were collected. All-cause 30-day readmissions data were compared to a historical group. RESULTS: HF knowledge and self-care maintenance scores increased significantly. Self-efficacy, self-care management and all-cause 30-day readmissions did not significantly improve. Most HF patients were highly satisfied. CONCLUSION: Supplementing usual HF education with VE was associated with improved HF knowledge and self-care maintenance.

Charitable Food Systems' Capacity to Address Food Insecurity: An Australian Capital City Audit.

Australian efforts to address food insecurity are delivered by a charitable food system (CFS) which fails to meet demand. The scope and nature of the CFS is unknown. This study audits the organisational capacity of the CFS within the 10.9 square kilometres of inner-city Perth, Western Australia. A desktop analysis of services and 12 face-to-face interviews with representatives from CFS organisations was conducted. All CFS organisations were not-for⁻profit and guided by humanitarian or faith-based values. The CFS comprised three indirect services (IS) sourcing, banking and/or distributing food to 15 direct services (DS) providing food to recipients. DS offered 30 different food services at 34 locations feeding over 5670 people/week via 16 models including mobile and seated meals, food parcels, supermarket vouchers, and food pantries. Volunteer to paid staff ratios were 33:1 (DS) and 19:1 (IS). System-wide, food was mainly donated and most funding was philanthropic. Only three organisations received government funds. No organisation had a nutrition policy. The organisational capacity of the CFS was precarious due to unreliable, insufficient and inappropriate financial, human and food resources and structures. System-wide reforms are needed to ensure adequate and appropriate food relief for Australians experiencing food insecurity.

Community Health Workers and the Management of Noncommunicable Diseases Among Rural Health Clinics in Limpopo Province, South Africa: A Pilot Study.

South Africa's rise in noncommunicable diseases (NCDs) and health care provider shortages has generated the need for community health workers (CHWs) in rural areas. However, roles and interactions with clinic staff are not well understood. Interviews with health care workers at community clinics in Limpopo Province revealed common themes, including resource scarcity, clinic-patient partnerships, management of NCDs, and collaboration between professionals. The data did not support CHW-physician interactions, necessitating further research to describe these practices and to evaluate CHWs' impact on patient outcomes. The CHW involvement in rural clinics is essential to patient-clinic partnerships and may help close treatment gaps in resource-poor areas.

Pain management in home hospice patients: A retrospective descriptive study.

The development and evaluation of evidence-based, safe, and effective home-based pain management models for caregivers implementation is receiving greater attention in the literature because of international initiatives intended to increase the number of people who receive end-of-life care in home-based settings. The purpose of this "retrospective descriptive design" study was to describe pharmacological pain management and outcomes for 40 cancer and non-cancer patients receiving hospice care at home. While the median pain score was higher at admission in the cancer group than in the hospice care at home group, the difference was not significant at or within 48 hour of admission. Overall, there was a significant decrease in pain from the first measurement to the second. Within the last seven days of life, the majority of participants were not able to provide a pain severity score when asked to evaluate the effectiveness of pain management, thus their caregiver provided a proxy evaluation. Pain management was effective in the home setting. More research is needed on the best methods to teach lay caregivers to assess pain and evaluate the effectiveness of pharmacological modalities to manage pain.

A team approach to recruitment in hospice research: engaging patients, close people and health professionals.

Research is vital to the future development of hospice care. However, research in hospice settings is very challenging. This paper describes a case study of a successful multidisciplinary research team approach (MDRT) to the recruitment of participants (hospice patients, family members and health professionals) for a study in a hospice setting on the economic evaluation of end-of-life care. A successful recruitment plan includes three key strategies: identifying key members of the MDRT early in the research process; having a clear and constant communication stream; and creating an environment where all team members have a shared commitment to the research, all voices are heard and valued, and everyone contributes to the research aims. An MDRT approach will be helpful to guide the development of successful recruitment plans for academic-community research partnerships in the hospice setting.

Community Health Workers' Palliative Care Learning Needs and Training: Results from a Partnership between a US University and a Rural Community Organization in Mpumalanga Province, South Africa.

The lack of palliative care knowledge among health care providers is a major barrier to adequate care in the rural provinces of South Africa (SA). Three aims: (1) to identify palliative care learning needs of community health workers (CHWs) working in a non-governmental organization (NGO) in Mpumalanga province SA, (2) to develop a training session based on the needs identified by the CHWs, and (3) to describe CHWs' perceptions of the usefulness of the training content. Data were collected from 29 CHWs in focus group interviews. Content analysis identified eight palliative care learning needs: HIV/AIDS, palliative care, TB, sexually-transmitted illnesses, debriefing, care of bedridden patients, other chronic diseases. Based on three of the most salient learning needs, a training session was planned and delivered. Future program development should consider interventions to provide emotional support for CHWs and how to evaluate the quality and impact of care provided on the community.

The effectiveness of nurse-led outpatient referral triage decision making in pediatric otolaryngology.

OBJECTIVES: To assess the effectiveness of nurse-led triage of outpatient referrals in an academic pediatric otolaryngology practice. METHODS: Three hundred consecutive outpatient referrals were reviewed and triaged by two otolaryngology registered nurses and two attending pediatric otolaryngologists. The nurses received triage training. The referrals were triaged as 'routine' (to be seen within 2-3 months), 'semi-urgent' (to be seen within 6 weeks), or 'urgent' (to be seen within 2 weeks). Weighted Kappa statistics (correcting for chance agreement) were performed to assess for the degree of agreement. After the consultation visits, patient records were reviewed to determine whether any referrals had been inappropriately triaged by the nurses. RESULTS: Overall, there was substantial agreement between all raters. Specifically, weighted Kappa statistics were as follows: surgeon 1, nurse 1: 0.708; surgeon 1, nurse 2: 0.670; surgeon 2, nurse 1: 0.762; surgeon 2, nurse 2: 0.647; nurse 1, nurse 2: 0.756; and surgeon 1, surgeon 2: 0.784. Review of patient charts after consultation showed that no referrals were deemed to be inappropriately triaged and no urgent cases had been missed. CONCLUSIONS: Our model of nurse-led triage of outpatient referrals was found to be effective and safe. Similar systems may be considered in other areas of medicine as a viable and acceptable alternative to the traditional physician-led triage practice.

Quality of hospice care: comparison between rural and urban residents.

Discrepancies between needed and received hospice care exist, especially in rural areas. Hospice care quality ratings for 743 rural and urban patients and their families were compared. Rural participants reported higher overall satisfaction and with pain/symptom management. Regardless of geographic location, satisfaction was higher when patients were informed and emotionally supported. Patients and family ratings did not differ. Findings support prior reports using retrospective rather than our study's point-of-care surveys.

Palliative care in Thailand.

In Thailand, several barriers exist that prevent people with life-limiting illnesses from accessing good-quality palliative care, namely: lack of palliative care providers; lack of training and education for the palliative care workforce; and issues with availability and distribution of opioids. Without palliative care, people suffer needlessly during the last months of their life. This paper gives an analysis of these issues and provides recommendations for clinical practice, research and health policy that may help to alleviate these issues.