Integrative review of the needs and challenges of indigenous palliative care in rural and remote settings.

AIMS: To appraise and synthesize the empirical literature on the needs and challenges of Indigenous peoples' accessibility to palliative care in rural and remote settings. DESIGN: Whittemore and Knafl's updated approach to integrative reviews, PRISMA guidelines and CASP (2020) checklists for narrative analysis were followed. DATA SOURCES: A systematic search of the published empirical literature from 1 January 2015 to 31 December 2021 was undertaken in five databases. REVIEW METHODS: Twenty-four studies met the research question and the inclusion criteria. RESULTS: Four themes describe the findings: Respect of Indigenous cultural beliefs on death and dying, connection to the land, needs for culturally responsive care and presence of institutional and systemic barriers. These themes indicate a pressing need to increase the accessibility and utilization of palliative care. Most of the studies were qualitative and conducted by teams of Indigenous and non-Indigenous researchers. CONCLUSION: Integrating Indigenous knowledge and providing culturally responsive palliative care are steps towards achieving the decolonization of palliative care and responding to Indigenous people's needs of palliative care services. Institutional and systemic racism affect Indigenous peoples' access and delivery of palliative services in Canada and globally. IMPACT: The review highlights the need for establishing partnerships and building local capacity with Indigenous communities to develop and implement culturally responsive palliative care programmes in remote locations.

An integrative review of Indigenous informal caregiving in the context of dementia care.

AIMS: To appraise the empirical literature on the needs of Indigenous informal caregivers caring for people living with dementia in Indigenous communities. DESIGN: Whittemore and Knafl's updated approach to integrative reviews, PRISMA guidelines, and CASP checklists for narrative analysis were followed. DATA SOURCES: A systematic search of published empirical literature from January 2010 to August 2020 was undertaken in six databases. REVIEW METHODS: Fifty-one studies met the research question and the inclusion criteria. RESULTS: Five themes describe the findings: Decolonizing Western perspectives on dementia, the centrality of cultural safety, caregivers' experiences, pre-dementia community education and family and community-centred care emerged from the thematic analysis. Most of the studies used quantitative methodologies, and few studies were conducted using community-based approaches. CONCLUSION: This review shows that Indigenous caregiving represents an emerging field in nursing and health sciences in a context of a global crisis. Researchers need to focus on Indigenous values and voices to adapt care and support informal caregivers. Our review emphasizes that working with Indigenous communities will likely translate into new care delivery models, policies and practices to support Indigenous informal caregivers and address the specific social determinants impacting caregivers' roles and tasks. IMPACT: This review highlights the necessity of having community and family-based discussions on enhancing the delivery of dementia care for Indigenous peoples in Canada and worldwide. Decolonizing Western perspectives of dementia translate into culturally safe approaches that aim to integrate Indigenous cultural perspectives of holism, reciprocity, wisdom, respect of older people and relationality into nursing practice. The support of Indigenous informal caregivers requires future studies to address the stigmatizing Western views of dementia.

An integrative review of empirical literature on indigenous cognitive impairment and dementia.

AIMS: To synthesize research findings about Indigenous perspectives on cognitive impairment and dementia. DESIGN: Whittemore and Knafl's updated approach to integrative review and PRISMA guidelines for narrative analysis was followed. DATA SOURCES: A systematic search of the published literature from 2010-June 2020 was undertaken in four databases and complemented by supplementary searches. REVIEW METHODS: Thirty-four studies met the research question and inclusion criteria. RESULTS: Four themes describe the findings. Most of the studies were conducted by non-Indigenous researchers and may reflect Western perspectives on dementia rather than Indigenous views. A majority of the studies report epidemiological data or the testing of clinical tools. CONCLUSION: The review indicates a dearth of knowledge about Indigenous perspectives on ageing and understanding of cognitive impairment and dementia. Researchers need to draw on Indigenous traditional knowledge, culture, and traditions through a meaningful engagement with Indigenous communities and Elders to indigenize and decolonize dementia care. IMPACT: This integrative review highlights the need for community-led discussions and community engagement around Indigenous perspectives, needs, and understandings of ageing, cognitive impairment, and dementia care.

Priorities for global research into children's palliative care: results of an International Delphi Study.

BACKGROUND: There is an urgent need to develop an evidence base for children's palliative care (CPC) globally, and in particular in resource-limited settings. Whilst the volume of CPC research has increased in the last decade, it has not been focused on countries where the burden of disease is highest. For example, a review of CPC literature in sub Saharan Africa (SSA) found only five peer-reviewed papers on CPC. This lack of evidence is not confined to SSA, but can be seen globally in specific areas, such as an insufficient research and evidence base on the treatment of pain and other symptoms in children. This need for an evidence base for CPC has been recognised for some time, however without understanding the priorities for research in CPC organisations, many struggle with how to allocate scarce resources to research. METHOD: The International Children's Palliative Care Network (ICPCN) undertook a Delphi study between October 2012 and February 2013 in order to identify the global research priorities for CPC. Members of the ICPCN Scientific Committee formed a project working group and were asked to suggest areas of research that they considered to be important. The list of 70 areas for research was put through two rounds of the Delphi process via a web-based questionnaire. ICPCN members and affiliated stakeholders (n = 153 from round 1 and n = 95 from round 2) completed the survey. Participants from SSA were the second largest group of respondents (28.1 % round 1, 24.2 % round 2) followed by Europe. RESULTS: A list of 26 research areas reached consensus. The top five priorities were: Children's understanding of death and dying; Managing pain in children where there is no morphine; Funding; Training; and Assessment of the WHO two-step analgesic ladder for pain management in children. CONCLUSIONS: Information from this study is important for policy makers, educators, advocates, funding agencies, and governments. Priorities for research pertinent to CPC throughout the world have been identified. This provides a much needed starting place for the allocation of funds and building research infrastructure. Researchers working in CPC are in a unique position to collaborate and produce the evidence that is needed.

Examination of Breast Cancer Screening Knowledge, Attitudes, and Beliefs among Syrian Refugee Women in a Western Canadian Province.

BACKGROUND: Women living in the Arab world present low breast cancer screening rates, delayed diagnosis, and higher mortality rates. PURPOSE: To further explore the Muslim Syrian refugee women's breast self-examination (BSE), utilization of clinical breast examination (CBE) and mammography. METHODS: A cross-sectional descriptive exploratory study design was used. The sample consisted of 75 refugee women. Data were collected using Champion's Health Belief Model Scale, the Cancer Stigma Scale, and the Arab Culture-Specific Barriers to Breast Cancer Questionnaire. Descriptive, Pearson correlation and logistic regression analyses were used to analyze the data. RESULTS: A minority of women had BSE (32%), CBE (12%) and mammograms (6.7%) anytime during their lifetime. Women's breast cancer screening (BCS) knowledge ranked at a medium level (M = 10.57, SD = 0.40). Low knowledge score, BSE information, policy opposition, responsibility, barriers to BSE, and seriousness were found to be statistically significant in women's BSE practice. BSE benefits and religious beliefs significantly predict CBE Age, education, knowledge, responsibility, susceptibility, social barriers, and religious beliefs were statistically significant in women's mammography use (p < .01). CONCLUSIONS: Participants' breast cancer screening practices were low. Health beliefs, Arab culture and stigma about cancer affected women's BCS practices. Faith-based interventions may improve knowledge and practices.

Hidden Tales of Ebola: Airing the Forgotten Voices of Ugandan "Ebola Nurses".

INTRODUCTION: According to the Centers for Disease Control and Prevention, Ebola has affected the lives of thousands, including health care workers. With few studies describing the experience of nurses who survived Ebola, the study aimed to describe Ugandan nurses' experiences. METHOD: Using a phenomenological design, in-depth interviews were conducted among five Ugandan nurses who contracted Ebola and survived. RESULT: Thematic analysis revealed themes of expectations of dying, hopelessness, loneliness, and betrayal by family, community, and the health system. DISCUSSION: Results support the need for policies targeting holistic practice protocols to protect all health care professionals during future outbreaks. Last, nursing survivors should have access to government-guaranteed support programs, including free health care and financial stipends. These results and recommendations transcend to the current reality of living with COVID-19 (coronavirus disease 2019). Efficient practice protocols could protect all rights and privileges and contribute to access to treatment and stigma removal.

Pediatric palliative care provision around the world: a systematic review.

Pediatric palliative care is recommended by many organizations. Yet, there is no information available on the progress that has been made in providing this care or the gaps that still exist in provision around the world. We conducted a systematic review to address this gap in knowledge. The systematic review identified 117 peer-reviewed and non-peer reviewed resources. Based on this information, each country was assigned a level of provision; 65.6% of countries had no known activities, 18.8% had capacity building activities, 9.9% had localized provision, and 5.7% had provision that was reaching mainstream providers. Understanding the geographic distribution in the level of provision is crucial for policy makers and funders.

A qualitative examination of othering processes within international nursing placements.

BACKGROUND: International placements represent a popular choice to develop cultural competency and safety in nursing. The question as to whether study abroad programs enable the development of cultural competency and safety skills or provide exotic travel experiences needs further clarifications. OBJECTIVE: The study explores the usefulness of international placements in developing cultural safety among undergraduate nursing students. DESIGN: An exploratory qualitative design was used to answer these research questions: 1) How do undergraduate students make sense of their study abroad experiences? And 2) How international placements facilitate the acquisition of cultural safety and consciousness-raising about racial and social privileges? PARTICIPANTS: A sample of 7 participants who completed a 4th-year community and acute care stages in Global South countries were recruited. METHODS: A postcolonial feminist theoretical approach was used to guide the study. DATA COLLECTION: Semi-structured interviews explored participants' perceptions of cultural differences, ways of adapting to cultural diversity, and the benefits and challenges of their global experiences. Thematic content analysis was used to analyze the data. RESULTS: Thematic analysis revealed three themes: 1) Self-knowledge, 2) othering, and 3) consciousness of neocolonialism. DISCUSSION: Results raise some concerns about the usefulness of international stages in developing cultural competency and cultural safety in undergraduate nursing students. Results indicate that international placements can be useful to raise consciousness about racial and social privileges. Yet, international placements involve some risks to the receiving Global South countries. This study unmasks Othering's processes, where participants reproduce harmful neocolonial relations. CONCLUSIONS: International placements involve cultural risks that translate into Othering processes where Global South nurses and students are represented as powerless. Postcolonial feminist theories are relevant to study international placements as they enable the critical examination of race, gender, and social class and how they play out in international placements in Global South countries.

Exploring healthcare providers' perspectives of the paediatric discharge process in Uganda: a qualitative exploratory study.

INTRODUCTION: The burden of childhood mortality continues to be born largely by low-income and middle-income countries. The critical postdischarge period has been largely neglected despite evidence that mortality rates during this period can exceed inpatient mortality rates. However, there is a paucity of data on the paediatric discharge process from the perspective of the healthcare provider. Provider perspectives may be important in the development of an improved understanding of the barriers and facilitators to improving the transition from hospital to home. OBJECTIVES: To explore healthcare providers' and facility administrators' perspectives of the paediatric discharge process with respect to: (1) current procedures, (2) barriers and challenges, (3) ideas for change, (4) facilitators for change and (5) the importance of discharge planning. DESIGN: A qualitative exploratory approach using focus groups (14) and in-depth interviews (7). SETTING: This study was conducted at seven hospitals providing paediatric care in Uganda. RESULTS: Current discharge procedures are largely based on hospital-specific protocols or clinician opinion, as opposed to national guidelines. Some key barriers to an improved discharge process included caregiver resources and education, critical communication gaps, traditional practices, and a lack of human and physical resources. Teamwork and motivation to see improved paediatric transitions to home were identified as facilitators to implementing the ideas for change proposed by participants. The need for a standardised national policy guiding paediatric discharges, implemented through education at many levels and coupled with appropriate community referral and follow-up, was broadly perceived as essential to improving outcomes for children. CONCLUSIONS: Although significant challenges and gaps were identified within the current health system, participants' ideas and the identified facilitators provide a significant basis from which change may occur. This work can facilitate the development of sustainable and effective interventions to improve postdischarge outcomes in Uganda and other similar settings.

Paediatric postdischarge mortality in developing countries: a systematic review.

OBJECTIVES: To update the current evidence base on paediatric postdischarge mortality (PDM) in developing countries. Secondary objectives included an evaluation of risk factors, timing and location of PDM. DESIGN: Systematic literature review without meta-analysis. DATA SOURCES: Searches of Medline and EMBASE were conducted from October 2012 to July 2017. ELIGIBILITY CRITERIA: Studies were included if they were conducted in developing countries and examined paediatric PDM. 1238 articles were screened, yielding 11 eligible studies. These were added to 13 studies identified in a previous systematic review including studies prior to October 2012. In total, 24 studies were included for analysis. DATA EXTRACTION AND SYNTHESIS: Two independent reviewers extracted and synthesised data using Microsoft Excel. RESULTS: Studies were conducted mostly within African countries (19 of 24) and looked at all admissions or specific subsets of admissions. The primary subpopulations included malnutrition, respiratory infections, diarrhoeal diseases, malaria and anaemia. The anaemia and malaria subpopulations had the lowest PDM rates (typically 1%-2%), while those with malnutrition and respiratory infections had the highest (typically 3%-20%). Although there was significant heterogeneity between study populations and follow-up periods, studies consistently found rates of PDM to be similar, or to exceed, in-hospital mortality. Furthermore, over two-thirds of deaths after discharge occurred at home. Highly significant risk factors for PDM across all infectious admissions included HIV status, young age, pneumonia, malnutrition, anthropometric variables, hypoxia, anaemia, leaving hospital against medical advice and previous hospitalisations. CONCLUSIONS: Postdischarge mortality rates are often as high as in-hospital mortality, yet remain largely unaddressed. Most children who die following discharge do so at home, suggesting that interventions applied prior to discharge are ideal to addressing this neglected cause of mortality. The development, therefore, of evidence-based, risk-guided, interventions must be a focus to achieve the sustainable development goals.

Predictor variables for post-discharge mortality modelling in infants: a protocol development project.

BACKGROUND: Over two-thirds of the five million annual deaths in children under five occur in infants, mostly in developing countries and many after hospital discharge. However, there is a lack of understanding of which children are at higher risk based on early clinical predictors. Early identification of vulnerable infants at high-risk for death post-discharge is important in order to craft interventional programs. OBJECTIVES: To determine potential predictor variables for post-discharge mortality in infants less than one year of age who are likely to die after discharge from health facilities in the developing world. METHODS: A two-round modified Delphi process was conducted, wherein a panel of experts evaluated variables selected from a systematic literature review. Variables were evaluated based on (1) predictive value, (2) measurement reliability, (3) availability, and (4) applicability in low-resource settings. RESULTS: In the first round, 18 experts evaluated 37 candidate variables and suggested 26 additional variables. Twenty-seven variables derived from those suggested in the first round were evaluated by 17 experts during the second round. A final total of 55 candidate variables were retained. CONCLUSION: A systematic approach yielded 55 candidate predictor variables to use in devising predictive models for post-discharge mortality in infants in a low-resource setting.

Spef1, a conserved novel testis protein found in mouse sperm flagella.

We describe the cloning and characterisation of Spef1, a novel testis-specific gene. Spef1 has evolutionary orthologues in a wide range of species including mammals, other vertebrates, Drosophila, and protozoans with motile cilia or flagella. A second homologue of the gene, Spef2, is also present in several species, suggesting that these genes form part of a novel gene family. The Spef1 protein has two conserved domains, one of which is more strongly conserved in both homologues of the gene. Expression analysis of Spef1 in mice shows that it is expressed predominantly in adult testis, suggesting a role in spermatogenesis. Using an antibody generated to recombinant Spef1, we demonstrate a specific pattern of Spef1 localisation in the seminiferous epithelium of adult mouse testis. Further immunohistochemical analysis using electron microscopy shows Spef1 to be present in the tails of developing and epididymal sperm, internal to the fibrous sheath and around the outer dense fibres of the sperm flagellum.

Management of injection pain in children.

Researchers have come to understand a great deal about pain mechanisms, especially in the past 30 years. This understanding has spawned the development of a number of psychological pain control strategies which have been extensively assessed for use with adults. Less is known about pain control strategies in children. The purpose of this study was to assess the value of 2 cognitive strategies (suggestion and music distraction) in reducing pain in children. Two hundred children, aged 4.5-6.5 years, receiving routine immunization injections were randomly assigned to one of the intervention groups in this factorial study. The groups were designated as: distraction, distraction with suggestion, suggestion and control. Subjects reported their pain using a 4-point pain scale. Distraction was found to significantly decrease pain whereas suggestion did not. Combining suggestion and distraction did not further enhance pain relief compared to use of distraction alone. Age was found to be an important determinant of the success of distraction. Furthermore, age was found to be related to amount of pain reported by children regardless of type of treatment. The results of this study support the use of music distraction in the reduction of injection pain in children.

TENS for children's procedural pain.

A 3 x 6 factorial design with a double blind and placebo control was employed to investigate the effect of TENS treatment on pain produced by venipuncture. The three treatment groups consisted of TENS, placebo-TENS and control. Subjects were blocked into six 2-year age groups (ages: 5-17 years). During the period of the study, 896 children attending the outpatient laboratory of a general hospital were screened and 514 children completed the study. The data which were collected before venipuncture included expected pain and state anxiety. Following venipuncture, pain intensity was measured with a vertical visual analogue scale (VAS) and pain affect was assessed with McGrath's faces scale. Significant main effects for treatment and age groups were obtained. Pain intensity and affect were lowest for the TENS group and highest for the control group. The pain scores were greatest for lower age groups and lowest for higher age groups. The results of this study support the use of TENS for children's pain and the need for interventions for children's procedural pain.

The use of a topical refrigerant anesthetic to reduce injection pain in children.

Early childhood experiences with painful injections may lead to anxiety and fear. These reactions need not develop if steps are taken to reduce the pain associated with injections. The purpose of this study was to assess the efficacy of a refrigerant topical anesthetic in reducing injection pain in preschool children experiencing routine diphtheria-pertussis-tetanus (DPT) immunizations. This double-blind placebo-controlled study was conducted in community health clinics in conjunction with ongoing immunization programs. Ninety subjects, aged 4-5.5 years, were randomly assigned to one of three groups: (a) refrigerant topical anesthetic; (b) placebo topical spray; and (c) no-spray control. Pain was measured subjectively using a four-point visual analogue scale. Both the refrigerant topical anesthetic spray and the placebo spray significantly reduced injection pain. Age was found to be an important factor influencing pain response in this study. Parental anxiety was not a significant factor influencing pain response. In addition, parents were not good at predicting their child's pain. The results of the study support the use of an intervention, such as refrigerant topical anesthetic, as a practical, simple, and effective treatment strategy for reduction of short-term painful procedures like injections.

Children's venipuncture pain: influence of technical factors.

Several aspects of venipuncture technique were evaluated to assess their relationship to reported pain. Subjects were 514 children aged 5-17 who had venipuncture performed by a technician in a hospital outpatient laboratory. A research assistant timed the duration of venipuncture and then obtained visual analogue pain scores from the children following venipuncture. Blood volume obtained from venipuncture was also measured. The technician who performed the procedure, amount of blood drawn, and time required to complete the venipuncture did not contribute to the prediction of children's pain. Age and anxiety, which were treated as covariates, were significant predictors of pain. The distribution of pain experienced by children was positively skewed and about one-third of children were above the mean pain score. From the results of this study, venipuncture pain can be recommended for the study of issues in children's pain. Further, the findings recommend the development and utilization of interventions to reduce children's venipuncture pain.

Assessing children's state anxiety.

Anxiety is an important component of children's pain and is routinely assessed in pain research. Two forms of the State-Trait Anxiety Inventory have been used frequently by researchers investigating children's pain and state anxiety (form C-1 and Y-1). We were unable to find psychometric information about this tool when used with a population of hospitalized children. Therefore, we undertook to assess reliability and validity, and identify problem items using data from 881 hospitalized children (aged 5-18 years) whom we had tested. Considering results of all analyses together, we concluded that the tools lack validity and reliability, and contain many problem items that are in need of revision.

Children's pain predictions and memories.

A cross-sectional descriptive design was utilized to explore expected, experienced and recalled pain, and anxiety. Subjects were 138 children (5-17 yr) who were attending an outpatient laboratory for venipuncture. They reported state anxiety and expected visual analogue scale pain prior to having venipuncture. Following venipuncture, they reported sensory and affective pain. Two months afterward, subjects were contacted and asked to recall sensory and affective pain from the venipuncture. Analysis of data determined that children's recall of pain was quite good although better for affective pain than sensory pain. Prediction accuracy for pain was not good. From analysis it was determined that overestimation of pain was related to anxiety but not to greater experienced pain. Four patterns of responses were identified when prediction and recall accuracy were further examined. These patterns were designated as realism, irrelevance, over-reaction and denial. It was suggested that these patterns of response may provide clues about avoidance and coping behavior for children's pain. In general, the results of this study did not support previous research. It was demonstrated that various statistical techniques which have been employed in research on this topic have influenced the interpretation of pain prediction and recall data.