Spiritual End-of-Life Care in Dutch Nursing Homes: An Ethnographic Study

ObjectivesThe aim of this study was to explore if and how spiritual needs are assessed and if spiritual care is provided to Dutch nursing home residents, including residents suffering from dementia, and if and how caregivers communicate and collaborate regarding the residents' spiritual needs.DesignTwo researchers conducted an ethnographic participatory study in a Dutch nursing home between April 2010 and June 2011, on a psychogeriatric unit (mostly dementia) and a somatic unit for residents suffering from physical disabilities. Inductive thematic analysis was used to identify patterns and trends and to interpret the data.ResultsThe physicians did not actively address spiritual issues, nor was it part of the official job of care staff. There was no communication between the physicians and the spiritual counselor. When a resident was about to die, the nurses started an informal care process aimed at (spiritual) well-being, including cuddling, rituals, and music. This was not mentioned in the care plan or the medical chart. The nurses even supported the residents outside their professional role in their spare time. Furthermore, we identified different occupational subcultures (eg, nurses and physicians), in which behavior of residents was given different meaning, depending on the frame of reference within the subculture.ConclusionSpiritual issues were addressed only informally and were not part of the formal care process, either for residents suffering from dementia or for those with physical disabilities. Our results raise questions about how the lack of communication about spiritual end-of-life care between disciplines, and the informal and formal care processes affect spiritual well-being.     

Explaining the Process of Spiritual healing of Critically-ill Patients: A Grounded Theory Study

Background:Spiritual healing is one of the most intriguing category of alternative and complementary medicine. The aim of this study was to explain the process of spiritual healing in patients with refractory diseases in Iran.Methods:This grounded theory study was conducted in Iran from 2018 to 2019. The participants were 14 patients with refractory diseases and 4 healers whom were first selected through purposeful and then theoretical sampling. Semi-structured interviews were used to collect data on patients and healers. All the interviews were transcribed verbatim. Data were coded and grouped under specific categories and analyzed using the Strauss and Corbin''s approach (2008).Results:Four main categories emerged from data analysis including: I) frustration to initial acceptance II) disbelief to trust III) evaluation to action and IV) doubt to certainty.Conclusion:The results of our study provide context-specific factors affecting the complex and multifactorial nature of spiritual healing process in patients with refractory diseases. Health care professional can use these findings in designing and implementing appropriate interventions to integrate spiritual healing into their holistic practices of care.     

Impact of spiritual symptoms and their interactions on health services and life satisfaction

PURPOSE Recent work suggests that the biopsychosocial model should be expanded to include the spiritual dimension as well. The purpose of this study was to assess the independent effects of spiritual symptoms and their interactions with biopsychosocial symptoms on health care utilization, extreme use of services, and life satisfaction among primary care patients.     

Comparison of Gender Minority Stress and Resilience Among Transmasculine,Transfeminine, and Nonbinary Adolescents and Young Adults

PurposeThis study examined whether transmasculine, transfeminine, and nonbinary adolescents and young adults (AYA) experience different levels of gender minority stress and resilience.MethodsDemographic and clinical information were abstracted from medical charts from AYA initiating gender-affirming care. Group comparisons between transgender and nonbinary groups were examined using one-way analyses of variance and Tukey's honestly significant difference post hoc tests.ResultsParticipants were 638 transgender and nonbinary AYA (65.5% transmasculine, 24.6% transfeminine, and 9.9% nonbinary). Transmasculine and transfeminine AYA reported more discrimination (ps = .008 and .006, respectively) compared to non-binary AYA. Transfeminine and nonbinary AYA reported more negative future expectations (ps = .006 and .016, respectively) and pride (ps ≤ .001 and .032, respectively) than transmasculine AYA.ConclusionsFindings suggest that transmasculine, transfeminine, and nonbinary AYA experience different levels of gender minority stress and resilience. Future research is warranted to further examine between-group differences and differential impact on mental health outcomes.     

Alleviating the suffering of seriously ill children.

Modern medicine has largely focused on the physical aspects of disease, aggressively attacking the illness, often at the expense of caring for pain and suffering. Medical interventions based solely on the diagnosis and treatment of disease limit the medical care of the severely ill child. Such an approach is particularly detrimental when caring for the terminally ill. Successful care of children with chronic, life-threatening, or terminal illnesses requires a comprehensive assessment of their physical, psychological, and spiritual needs as well as a process of collaboration between members of the multiple disciplines involved in the care of the patient and the family unit as a whole. Supportive/palliative care serves as a bridge between a scientific (disease-oriented) and humanistic (person-oriented) approach to patient care. Bridging this gap early in the course of life-threatening illness is essential for successful palliative intervention to relieve suffering and improve the quality of life for the child and his or her family. A model that introduces supportive, palliative, and hospice services into the mainstream of medical therapy is emphasized as a standard for the care of all children with significant chronic, life-threatening, or terminal illness. This article expands on a previous paper published in the American Journal of Hospice & Palliative Care (Kane JR, Barber RG, Jordan M, et al.: Supportive/palliative care of children suffering from life-threatening and terminal illness. May/June 2000; 17(3): 165-172).     

Exploring the Process of Spiritual Health of the Elderly Living in Nursing Homes: A Grounded Theory Study

BackgroundSpiritual health is one of the important dimensions of the elderly''s health, which plays an important role in other dimensions of their health. This study aimed to explain the process of spiritual health of the elderly living in nursing homes.MethodsThis grounded theory study was conducted in 4 nursing homes in the city of Arak Iran between October 2019 and September 2020. The participants were 24 elderly people living in nursing homes, two health care providers, one nurse and one family member, first selected through purposive sampling and then, through theoretical sampling. The data were collected through semi-structured interviews and field notes. All the interviews were transcribed verbatim and analyzed based on Strauss and Corbin approach (2008).ResultsSix main categories were identified, including helplessness, inefficient supportive environment, spiritual distress, seeking support, relative improvement of spiritual health and factors affecting spiritual health, each of which explains a part of the whole process of spiritual health of the elderly living in nursing homes.ConclusionSupporting the elderly living in nursing homes is necessary in order to meet their spiritual needs and preserve and promote their spiritual health.     

Gender Differences in Routine Health Maintenance Examinations Before and During the COVID-19 Pandemic

PurposeAdolescent and young adult (AYA) males historically have lower healthcare utilization than their female peers.MethodsElectronic health record data from an Adolescent/Young Adult Medicine outpatient practice were reviewed to assess gender differences in routine health maintenance examinations before and during the COVID-19 pandemic.ResultsRoutine health maintenance examinations decreased for both males and females during the pandemic. However, a two-proportion z-test demonstrated that established male patients were statistically less likely (p < .01) to have a routine health maintenance examination from December 2020 to December 2021 than their female counterparts.DiscussionAYA males are at a higher risk for persistent disengagement in healthcare and exacerbates future gender gaps in healthcare utilization. Primary care providers need to focus efforts on re-engaging all young people in preventive care, with specific efforts tailored to AYA males.     

The role of geriatric palliative care in hospitalized older adults

ABSTRACT

Take-Away Points:

1. Geriatric palliative care requires integrating the disciplines of hospital medicine and palliative care in pursuit of delivering comprehensive, whole-person care to aging patients with serious illnesses.

2. Older adults have unique palliative care needs compared to the general population, different prevalence and intensity of symptoms, more frequent neuropsychiatric challenges, increased social needs, distinct spiritual, religious, and cultural considerations, and complex medicolegal and ethical issues.

3. Hospital-based palliative care interdisciplinary teams can take many forms and provide high-quality, goal-concordant care to older adults and their families.     

Development of System Performance Indicators for Adolescent and Young Adult Cancer Care and Control in Canada

ObjectivesTo develop an expert-group, consensus-based list of system performance indicators to be used for monitoring, evaluating, and benchmarking progress for cancer care and control in adolescents and young adults (AYAs) in Canada.MethodsA national multidisciplinary panel of AYA oncology experts was convened; they prepared a literature review and undertook a brainstorming exercise to create a comprehensive list of indicators based on a previously defined framework for AYA cancer care and control in Canada. A modified Delphi process was then undertaken to cull the list based on 3 quick screen criteria. Three rounds of ranking were required. The fourth stage employed a face-to-face meeting, and the final stage utilized a survey to rank the indicators on the basis of importance and feasibility.ResultsNineteen participants contributed to the 5-stage process. From an initial list of 114 indicators, 14 were ultimately endorsed, representing 5 themes: active care, survivorship, psychosocial issues, palliative care, and research. The 5 highest ranked indicators were assessed as very to moderately feasible, with only a single indicator (clinical trial enrollment) in the top 5 assigned a least feasible ranking.ConclusionThe 14 indicators provide a starting point for the development of a standard set of metrics for AYA cancer care and control in Canada and have potential for international utility.     

Pediatrie HIV Adherence

Summary

Providers working with children living with HIV strive to achieve “good adherence,” often viewed only as consistent pill taking by the infected child. This goal, while important, needs to be expanded with a thorough examination of the many biopsychosocial factors impacting the HIV affected family. The complexity of the issues affecting adherence to a pediatrie HIV medical regimen can overwhelm both the practitioner and the patient. By utilizing a developmental framework and emphasizing the critical importance of the relationship between provider, patient and family, the authors (both of whom are social workers who have worked over a period of many years with children and families living with terminal and serious chronic illnesses) describe a developmental approach that includes comprehensive assessment to address the multiple challenges faced by individuals and families they have worked with.     

Spousal caregivers’ experiences of participation in everyday life when living in shifting contexts

Abstract

Background: To promote health and well-being, and to meet the desires of the growing elderly population to age in place, elderly spousal caregivers need adequate support such as respite care services. More knowledge is needed about elderly spousal caregivers’ experiences in relation to participation, which is an aspect of health that remains relatively unexplored for this group.

Aim: To explore and describe how elderly spousal caregivers experience and discuss participation in everyday life when living in shifting contexts due to the use of respite care.

Method: A grounded theory approach was used during data generation and analysis, which involved repeated focus group interviews with 12 spousal caregivers.

Results: Complexity and ambiguity was understood to imbue participation in everyday life. Being in charge of everyday life was challenging for spousal caregivers, and created a need for personal time. Respite care and home care service gave them time, although when interacting with social contexts other issues arose that influenced their own recovery.

Conclusions: A holistic ‘situation centered’ approach that focuses on the elderly couple’s life story and needs might capture a wider perspective and enable adequate support that influences their health, well-being, and participation in everyday life.     

The place of spirituality in managed care. Attending to spiritual needs can help managed care systems achieve their goals

If managed care leaders are able to achieve their goals of enhancing total well-being within a capitated system of care, they must attend to the broad new societal interest in spiritual perspectives and find ways to integrate them into their structure of care. Imaginative and sensitive members of many professions, particularly those who acknowledge the value of spirituality in their own lives and are convinced of its value in healing, will likely spearhead this integrated movement. Promoting individuals' total well-being necessitates an acknowledgement that everyone has a unique personal spirituality that needs to be addressed at times of crisis, such as illness or hospitalization. Further, attention to the spiritual dimensions of problems that result in high healthcare costs, such as violence, alcoholism, and the fear of death, can help reduce those costs. The process of grief also needs to be addressed in healthcare settings, for professionals as well as patients, to enhance understanding, acceptance, and the quality of care. People recover and retain health through a balanced integration of physical, spiritual, and community aspects of their lives. If professional chaplains who have emphasized crisis and acute care in their ministry styles are to contribute to this integrative healing and its adoption into managed care systems, they may need to explore broader frameworks, holistic concepts of healing processes, motivations for self-care, and a personal holistic balance.     

Impact of COVID-19: Nursing challenges to meeting the care needs of people with developmental disabilities

BackgroundPeople with developmental disabilities (DD) are a population at high-risk for poor outcomes related to COVID-19. COVID-19-specific risks, including greater comorbidities and congregate living situations in persons with DD compound existing health disparities. With their expertise in care of persons with DD and understanding of basic principles of infection control, DD nurses are well-prepared to advocate for the needs of people with DD during the COVID-19 pandemic.ObjectiveTo assess the challenges faced by nurses caring for persons with DD during the COVID-19 pandemic and how the challenges impact people with DD.MethodsWe surveyed 556 DD nurses, from April 6–20, 2020. The 35-item mixed-method survey asked nurses to rate the degree of challenges faced in meeting the care needs of people with DD. We analyzed responses based on presence of COVID-19 in the care setting and geographically. One open-ended question elicited challenges not included in the survey, which we analyzed using manifest content analysis.ResultsStartlingly, nurses reported being excluded from COVID-19 planning, and an absence of public health guidelines specific to persons with DD, despite their high-risk status. Obtaining PPE and sanitizers and meeting social-behavioral care needs were the most highly ranked challenges. COVID-19 impacted nurses’ ability to maintain adequate staffing and perform essential aspects of care. No significant geographic differences were noted.ConclusionsDD nurses must be involved in public health planning and policy development to ensure that basic care needs of persons with DD are met, and the disproportionate burden of COVID-19 in this vulnerable population is reduced.     

Perceived inequalities in care and support for older women from Black and minority ethnic backgrounds in Wales: findings from a survey exploring dignity from service providers’ perspectives

ABSTRACT

Objective: As part of a large mixed-method study aimed at capturing understandings of dignity, and care expectations of community dwelling older women from Black and minority ethnic (BME) backgrounds living in Wales, the aim of this paper is to compare service providers’ perceptions of their care and support provided to older people in general, and to older women from BME backgrounds in particular, with a focus on two dignity indicators: care and support needs, and effective communication.

Design: A survey design was used.

Results: A total of 124 responses from service providers in Wales were received. Perceived inequalities in care and support were found. Although most respondents reported that care and support provision was generally acceptable, more respondents believed that compared to older people in general, older women from BME backgrounds were seldom or never offered opportunities and support to express their needs, were involved in their own care, were provided appropriate information, had their key needs especially less visible needs (psychological and religious needs) been taken into account, or were communicated with effectively (all p?<?0.05). In some cases, respondents tended to report more positively in areas related to their own practice.

Conclusion: We suggest that learning from the views and perceptions of service providers, as well as older people and their families, remains key to developing services for the UK's increasingly diverse and ageing population. A better understanding of how inequalities may occur, their impact on older people and their families, and how they may be minimised can inform the development of high quality care for older people regardless of their ethnic and cultural backgrounds in Wales, other parts of the UK and beyond.     

Symptom Burden and Unmet Support Needs of Patients With Parkinson's Disease: A Cross-Sectional Study in Asia-Pacific Regions

ObjectivesSupport care is rarely assessed and offered to people with long-term neurologic conditions, particularly Parkinson's disease. This study aimed to assess the symptom burden and unmet support care needs in people with mild to severe Parkinson's disease.DesignCross-sectional study.Setting and ParticipantsPatients with Parkinson's disease were recruited from neurologic outpatient clinics from 3 East and Southeast Asian regions, including Hong Kong, Taiwan, and Thailand.MethodsA standardized set of questionnaires assessing unmet care needs [Palliative care Outcome Scale (POS)], disease-specific symptom burden (POS–Symptoms–Parkinson's Disease), generic health-related quality of life (HRQOL) (EQ-5D-3L), and sociodemographic and clinical background.ResultsCompleted questionnaires (n = 186) were collected from 64 Hong Kong Chinese, 64 Taiwanese, and 58 Thai patients. Their mean age was 67.23 ± 8.07, 54% were female, and 80% had mild-to-moderate disease. Their mean POS score was 10.48 ± 6.38, indicating moderate unmet support needs. Two-thirds of the participants rated constipation, fatigue, leg problem, and daytime somnolence as the most prevalent and burdensome symptoms. Patients from Hong Kong and Taiwan prioritized psychosocial and spiritual support, whereas Thai patients prioritized physical needs and emotional concerns. Multivariate adjustment for demographics and clinical characteristics showed that high psychological, spiritual, and practical burdens are associated with young age, male gender, and advanced disease stages.Conclusions and ImplicationsPatients experience significant symptom burden and moderate unmet support needs at the early to middle stage of Parkinson's disease. Routine assessment of changes in symptom burden should start early. The timely referral of support care services should provide appropriate psychospiritual and practical support in addition to motor training. Planning for support care services should consider cultural and health service contexts.