Overview of Perinatal Palliative Care in Brazil
quality of life; palliative care; Brazil; mothers; epidemiology; pregnancy; Chordata; eukaryotes; health care; Hominidae; Homo; human diseases; Latin America; mammals; man; primates; South America; vertebrates; birth; America; animals; neonates; epidemics; gestation; women; guidelines; recommendations; birth defects; Community of Portuguese Language Countries; congenital abnormalities; congenital malformations; drug abusers; drug users; high Human Development Index countries; malformations; microcephaly; upper-middle income countries
Significant attention to palliative care in terminally ill patients has only been effective in Brazil since the year 2000, although there have been isolated actions since the 1980s. When the case involves fetuses or neonates unable to cure, communication and care with the family members only received attention and effective organization starting in 2017. Notably in the years 2015 and 2016 there was an epidemic of microcephaly and along with the persistent crisis of drug users has raised the indices of malformations to a level higher than 3% of the world average. Here we aim the evaluation of: (a) social, educational and spiritual profile of the mothers; (b) structure of the specific teams related to palliative care in neonatology; (c) recommendations and protocols currently used in the country. The method used is an electronic retrospective on databases and government data; evaluation of the location and composition of palliative care teams in the country. The data found clearly point out that for Brazilian women, the characteristics of regionality in the country, educational level, religiousness and quality of life directly influence pregnancy and the acceptance or not of the possibility of death, directly influencing perinatal palliative care, which, by the way, is still developing methodologies for this type of action.
Saffi Junior MC; de Moraes AMSM; Favero GM
Brazilian Archives of Biology and Technology
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1590/1678-4324-2022210615" target="_blank" rel="noreferrer noopener">10.1590/1678-4324-2022210615</a>
Community health workers in palliative care provision in low-income and middle-income countries: a systematic scoping review of the literature
children; palliative care; India; methods; Developing Countries; Asia; health care; recommendations; Chordata; eukaryotes; Hominidae; Homo; human diseases; mammals; man; primates; vertebrates; animals; Commonwealth of Nations; sustainability; methodology; systematic reviews; allied health occupations; community health; effects; grey literature; guidelines; health services; health workers; literature reviews; medical auxiliaries; Newly Industrialized Countries; NICS; non-conventional literature; South Asia; techniques; Third World; threshold countries; Underdeveloped Countries; workers
Background: Community health workers (CHWs) are currently deployed in improving access to palliative care in a limited number of low-income or middle-income countries (LMICs). This review therefore aimed to document evidence from LMICs regarding (1) where and how CHWs are currently deployed in palliative care delivery, (2) the methods used to train and support CHWs in this domain, (3) the evidence surrounding the costs attached with deploying CHWs in palliative care provision and (4) challenges and barriers to this approach. Methods: We conducted a systematic scoping review of the literature, adhering to established guidelines. 11 major databases were searched for literature published between 1978 and 2019, as well as the grey literature. Findings: 13 original studies were included, all of which were conducted in sub-Saharan African countries (n=10) or in India (n=3). Ten described a role for CHWs in adult palliative care services, while three described paediatric services. Roles for CHWs include raising awareness and identifying individuals requiring palliative care in the community, therapeutic management for pain, holistic home-based care and visitation, and provision of psychological support and spiritual guidance. Reports on training context, duration and outcomes were variable. No studies conducted a formal cost analysis. Challenges to this approach include training design and sustainability; CHW recruitment, retention and support; and stigma surrounding palliative care. Conclusion: Despite relatively limited existing evidence, CHWs have important roles in the delivery of palliative care services in LMIC settings. There is a need for a greater number of studies from different geographical contexts to further explore the effectiveness of this approach.
MacRae M C; Fazal O; O'Donovan J
BMJ Global Health
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjgh-2020-002368" target="_blank" rel="noreferrer noopener">10.1136/bmjgh-2020-002368</a>
When a child is sick: the role of social tourism in palliative and end-of-life care
animals; Britain; British Isles; child care; childhood diseases; children; Chordata; Commonwealth of Nations; Developed Countries; emotions; eukaryotes; Europe; European Union Countries; health care; health policy; Hominidae; Homo; mammals; man; OECD Countries; primates; social tourism; UK; United Kingdom; vertebrates; Western Europe
Drawing upon transformative service research and social tourism literature, this paper explores the relationship between respite care and childhood illness. It focuses specifically upon the short break opportunities attached to respite care offered in children's hospices in the United Kingdom. Pathographies (illness narratives), shared by patients, siblings and family (n = 23), provide unique insights into ways in which each participate in respite care. Participation prompts inclusivity and normality. It offers a break from illness, and contributes to uplifting feelings of optimism, escapism and new beginnings. Conclusions drawn argue the need for healthcare policy to move beyond 'Dying Well' narratives into ones which celebrate 'Living Well with Dying'. Tourism participation has much to offer such a progressive healthcare policy.
Hunter-Jones P; Sudbury-Riley L; Al-Abdin A; Menzies L; Neary K
Annals of Tourism Research
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.annals.2020.102900" target="_blank" rel="noreferrer noopener">10.1016/j.annals.2020.102900</a>
Effectiveness of psychotherapeutic interventions on psychological distress in women who have experienced perinatal loss: a systematic review protocol
animals; Chordata; eukaryotes; gestation; Hominidae; Homo; human diseases; mammals; man; mental disorders; mental health; mental illness; meta-analysis; perinatal mortality; pregnancy; pregnancy complications; pregnant women; primates; psychotherapy; randomized controlled trials; systematic reviews; vertebrates; women
Background: Perinatal loss is a traumatic and complex experience that contributes to negative maternal psychological states and adverse outcomes impacting fetal development, maternal-fetal/infant bonding, marital/partner relationships, and child cognitive, emotional, and behavioral development. These outcomes present preventable disease burden and financial liability to individuals, families, and the healthcare system. Psychological interventions have the potential to improve outcomes for women and their families after perinatal loss. A few studies have explored the effectiveness of individual psychotherapeutic interventions in reducing maternal psychological distress after perinatal loss; however, a systematic review to compare these interventions has not been conducted. The primary objective of this systematic review is to determine the effectiveness of psychotherapeutic intervention on psychological distress and perception, coping, and adjustment in women who have experienced perinatal loss. The secondary objective of this review is to examine the content and delivery methods of effective psychotherapeutic interventions. Methods: We endeavor to search electronic databases (PsycINFO, MEDLINE, Embase, Cochrane Central Register of Controlled Trials (CENTRAL), Scopus, CINAHL, Social Work Abstracts, Family and Society Studies Worldwide, Family Studies Abstracts, Academic Search Premier), gray literature databases (Proquest Dissertation and Theses Global, Web of Science Conference Proceedings Citation Index, OAIster, Open-Grey, Canadian Electronic Library, Canadian Research Index), and relevant organizational websites and conduct forward and backward citation searches of included studies. Inclusion criteria will consider studies that (1) are randomized controlled trials (RCTs), quasi-experimental (e.g., before-after design), and observational (prospective cohort); (2) include women affected by perinatal loss accessing psychotherapeutic intervention or support; and (3) evaluate a mental health or related outcome. Two authors will independently screen all citations, full-text articles, and abstract data. The study methodological quality (or bias) will be appraised using an appropriate tool. The primary outcome(s) will be measurements on the severity of depressive, anxiety, grief, and post-traumatic stress symptoms. Secondary outcomes will include measurements on difficulties in perception, coping, social, or dyadic adjustment. Conducting a narrative synthesis will identify relationships within study findings, and if appropriate, a random effects meta-analysis will be performed. Discussion: This systematic review will summarize the effectiveness of psychological interventions, including their content and delivery method, in reducing psychological distress and improving outcomes for women affected by perinatal loss. The evidence generated from this review can inform researchers and policymakers in expanding on related research and developing customized interventions or programs.
Charrois E M; Bright K S; Wajid A; Mughal M K; Hayden K A; Kingston D
Systematic Reviews
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s13643-020-01387-6" target="_blank" rel="noreferrer noopener">10.1186/s13643-020-01387-6</a>
The "lactation after infant death (AID) framework": a guide for online health information provision about lactation after stillbirth and infant death
animals; Chordata; eukaryotes; health; Hominidae; Homo; infant mortality; infants; lactation; mammals; man; primates; stillbirths; vertebrates
This article collated and critically reviewed international evidence-based lactation and bereavement information to devise a comprehensive framework on the diverse options for lactation management after stillbirth and infant death by outlining the development of the 25-point evidence-based Lactation AID Framework intended for use by health organizations that provide written online lactation health information to bereaved parents.
Carroll K; Noble-Carr D; Sweeney L; Waldby C
Journal of Human Lactation
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0890334420926946" target="_blank" rel="noreferrer noopener">10.1177/0890334420926946</a>
Trends in incidence, prevalence, and mortality of neuromuscular disease in Ontario, Canada: a population-based retrospective cohort study (2003-2014)
children; adolescent; adult; article; child; cohort analysis; female; human; major clinical study; male; palliative therapy; retrospective study; controlled study; palliative care; school child; Ontario; aged; health insurance; infant; young adult; age; America; amyotrophic lateral sclerosis; amyotrophic lateral sclerosis/ep [Epidemiology]; animals; APEC countries; Canada; childhood disease/ep [Epidemiology]; childhood diseases; Chordata; cohort studies; Commonwealth of Nations; data base; death rate; Developed Countries; disease course; disease prevalence; disease progression; eukaryotes; health care; Hominidae; Homo; human diseases; incidence; International Classification of Diseases; mammals; man; middle aged; mortality; mortality rates; muscles; neuromuscular disease/ep [Epidemiology]; neuromuscular diseases; neuromuscular disorders; North America; OECD Countries; planning; population research; preschool child; prevalence; primates; retrospective studies; sclerosis; spinal muscular atrophy/ep [Epidemiology]; spine; survival; trend study; trends; vertebrates
Background: Population trends of disease prevalence and incidence over time measure burden of disease and inform healthcare planning. Neuromuscular disorders (NMD) affect muscle and nerve function with varying degrees of severity and disease progression. Objective: Using health administrative databases we described trends in incidence, prevalence, and mortality of adults and children with NMD. We also explored place of death and use of palliative care. Methods: Population-based (Ontario, Canada) cohort study (2003 to 2014) of adults and children with NMD identified using International Classification of Disease and health insurance billing codes within administrative health databases. Results: Adult disease prevalence increased on average per year by 8% (95% confidence interval (CI) 6% to 10%, P<.001), with the largest increase in adults 18-39 years. Childhood disease prevalence increased by 10% (95% CI 8% to 11%, P<.0001) per year, with the largest increase in children 0 to 5 years. Prevalence increased across all diagnoses except amyotrophic lateral sclerosis and spinal muscular atrophy for adults and all diagnoses for children. Adult incidence decreased by 3% (95% CI -4% to -2%, P<.0001) but incidence remained stable in children. Death occurred in 34,336 (18.5%) adults; 21,236 (61.8%) of whom received palliative care. Death occurred in 1,009 (5.6%) children; 507 (50.2%) of whom received palliative care. Mortality decreased over time in adults (odds ratio (OR) 0.86, 95% CI 0.86-0.87, P<.0001) and children (OR 0.79, 95% CI 0.76-0.82, P<.0001). Use of palliative care over time increased for adults (OR 1.18, 95% CI 1.09 to 1.28, P <.0001) and children (OR 1.22, 95% CI 1.20 to 1.23, P <.0001). Conclusions: In both adults and children, NMD prevalence is rising and mortality rates are declining. In adults incidence is decreasing while in children it remains stable. This confirms on a population-based level the increased survival of children and adults with NMD.
Rose L; McKim D; Leasa D; Nonoyama M; Tandon A; Bai Y; Amin R; Katz S; Goldstein R; Gershon A
PLoS ONE
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1371/journal.pone.0210574" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0210574</a>
Association of mortality with the death of a sibling in childhood
Animals; bereavement; causes of death; Children; Chordata; Cohort Studies; Death; death rate; Denmark; Developed Countries; eukaryotes; Europe; European Union Countries; Hominidae; Homo; mammals; man; mortality; Nordic Countries; Northern Europe; OECD Countries; primates; Risk Factors; Scandinavia; Siblings; Sweden; vertebrates
Importance: The death of a close relative is associated with an increased mortality risk among the bereaved, but much less is known about the potential association of the death of a sibling in childhood with mortality in this population. Objective: To examine the association between sibling death in childhood and subsequent mortality risk. Design, Setting, and Participants: This population-based cohort study of 5 005 029 participants evaluated linked national registers in Denmark (January 1, 1973, through December 31, 2009) and Sweden (January 1, 1973, through December 31, 2008). A total of 2 060 354 Danish and 2 944 675 Swedish children who survived the first 6 months of their life were included. We excluded 14 children who died of the same external cause as their siblings within 30 days. Data were analyzed from November 2, 2015, through October 14, 2016. Exposures: Participants were classified as exposed if a sibling died in childhood (age <18 years). Main Outcomes and Measures: Poisson regression was used to estimate mortality rate ratio (MRR) with the exposure as a time-varying variable. Results: Among the 55 818 participants who experienced sibling death in childhood (51.5% male and 48.5% female; median age at loss, 7.0 [interquartile range, 3.3-12.1] years), all-cause mortality risk was increased by 71% (MRR, 1.71; 95% CI, 1.57-1.87) during the follow-up of 37 years. The excess mortality risk was observed for groups with specific causes of death, and the higher MRRs were found when the sibling pairs died of the same cause (death due to disease [MRR, 2.16; 95% CI, 1.87-2.49]; death due to external cause [MRR, 1.91; 95% CI, 1.54-2.37]). The increased mortality risk after sibling death was seen across the follow-up period, regardless of the age at bereavement and the type of death among bereaved siblings, but the magnitude of association was stronger during the first year after sibling death (MRR, 2.51; 95% CI, 1.79-3.54). Higher MRRs were found among sibling pairs with the same sex (MRR, 1.92; 95% CI, 1.70-2.18) and close age (MRR, 1.94; 95% CI, 1.58-2.37). Conclusions and Relevance: Bereavement in childhood because of the death of a sibling was associated with an increased risk for mortality in the short and long term. Health care professionals should be aware of individuals' vulnerability due to sibling death, especially for sibling pairs of close age or the same sex. Social and health care support may help to minimize the potential adverse effects on the bereaved sibling.
Yu YongFu; Liew ZeYan; Cnattingius S; Olsen J; Vestergaard M; Fu Bo; Parner ET; Qin GuoYou; Zhao NaiQing; Li Jiong
Jama Pediatrics
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1001/jamapediatrics.2017.0197" target="_blank" rel="noreferrer">10.1001/jamapediatrics.2017.0197</a>
Directives of adequacy of the therapeutic effort in children. Experience of the Pediatric Palliative Care Unit of Pereira Rossell Hospital Center (2009-2015)
America; Animals; Children; Choice; Chordata; Decision Making; Developing Countries; Eukaryotes; Health Care; Hominidae; Homo; Human Diseases; Latin America; Mammals; Man; Paediatrics; Palliative Care; Pediatrics; Primates; South America; Threshold Countries; Uruguay; Vertebrates
Introduction: In certain patients, "directives on the adequacy of therapeutic effort" (DAET) known as advanced care planning are important tools to align medical care to patient's and family's objectives of care. Purpose: To describe characteristics of patients assisted by a paediatric palliative care unit (PPCU) with DAET and the degree in which they were respected in children who died. Methods: Descriptive, retrospective study. Period: 1/January/2009-31/December/2015. Population: children assisted by the UCPP with DAET. Variables: age, pathology, prosthesis carried, primary caregiver, participants in decision-making process, form of registration, measures "TO PERFORM" and "NOT TO PERFORM", time between recruitment by PPCU/DAET, death, time between DAET/death, place of death, DAET accomplished. Results: DAET was found in 11.8% (73/618) of patients; median age: 3.8 years old; 75.3% had severe neurological impairment; 84.9% carried at least one prosthesis; primary caregiver: mother 72.6%. Participants in decision-making process: healthcare team and primary caregiver 94.5%. Registration in specific document: 60.3%. DAET included: "TO PERFORM": analgesia and comfort care: 100%, admission to moderate care: 86.3% and "NOT TO PERFORM": cardiopulmonary resuscitation: 100%, admission to intensive care: 86.3%, mechanical ventilator assistance 83.5%. Time between recruitment by PPCU/DAET: median: 13 months. 53.4% (39/73) died, in the hospital 76.9%. Time between DAET/death, median: 7 months. DAET were followed in 97.4%. Discussion and conclusions: 11.8% of children assisted by PPCU had DAET. Decision-making was shared between health providers and caregivers in most cases. DAET were respected in almost all children who had them and died.
Pereira I; Koziol S; Mauvezin J; Notejane M; Bernadá M
Revista Medica Del Uruguay
2017
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<a href="http://www.rmu.org.uy/revista/33/1/2/en/4/abstract/" target="_blank" rel="noreferrer">[direct link; no identifier]</a>