Parent engagement in perinatal mortality reviews: an online survey of clinicians from six high-income countries
Female; Humans; Male; Infant Newborn; Health Care Surveys; Parents; Cross-Sectional Studies; Developed Countries; Patient Participation; Stillbirth; Perinatal Mortality; stillbirth; Patient Safety; Bereavement care; parent engagement; perinatal mortality review; Medical Audit/methods
OBJECTIVE: Parent engagement in perinatal mortality review meetings following stillbirth may benefit parents and improve patient safety. We investigated perinatal mortality review meeting practices, including the extent of parent engagement, based on self-reports from healthcare professionals from maternity care facilities in six high-income countries. DESIGN: Cross-sectional online survey. SETTING: Australia, Canada, Ireland, New Zealand, UK and USA. POPULATION: A total of 1104 healthcare professionals, comprising mainly obstetricians, gynaecologists, midwives and nurses. METHODS: Data were drawn from responses to a survey covering stillbirth-related topics. Open- and closed-items that focused on 'Data quality on causes of stillbirth' were analysed. MAIN OUTCOME MEASURES: Healthcare professionals' self-reported practices around perinatal mortality review meetings following stillbirth. RESULTS: Most clinicians (81.0%) were aware of regular audit meetings to review stillbirth at their maternity facility, although this was true for only 35.5% of US respondents. For the 854 respondents whose facility held regular meetings, less than a third (31.1%) reported some form of parent engagement, and this was usually in the form of one-way post-meeting feedback. Across all six countries, only 17.1% of respondents described an explicit approach where parents provided input, received feedback and were represented at meetings. CONCLUSIONS: We found no established practice of involving parents in the perinatal mortality review process in six high-income countries. Parent engagement may hold the key to important lessons for stillbirth prevention and care. Further understanding of approaches, barriers and enablers is warranted. TWEETABLE ABSTRACT: Parent engagement in mortality review after stillbirth is rare, based on data from six countries. We need to understand the barriers.
Boyle FM; Horey D; Siassakos D; Burden C; Bakhbakhi D; Silver RM; Flenady V
Bjog
2021
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/10.1111/1471-0528.16529" target="_blank" rel="noreferrer noopener">10.1111/1471-0528.16529</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>
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
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<a href="http://doi.org/10.1371/journal.pone.0210574" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0210574</a>
Child death in high-income countries
Child; Humans; Perinatal Care; cause of death; child mortality; Developed Countries; Early Diagnosis; Primary Prevention
Reductions in child mortality in high-income settings have been substantial over recent decades, although variations remain between and within countries. A three-part Series outlines the epidemiology of child mortality and a standardised approach to child death reviews in high-income countries. The Series authors delineate patterns of child mortality at different ages into five broad categories (perinatal causes, congenital abnormalities, acquired natural causes, external causes, and unexplained deaths), and describe contributory factors across four broad domains—biological and psychological factors, the physical environment, the social environment, and service delivery. In a Comment, the conclusions of these three reports are reviewed, and practical recommendations on strategies are proposed in three key areas: perinatal causes, notably preterm birth; acquired natural causes, such as sepsis or acute respiratory problems; and external causes, including road traffic fatalities.
2014-09
Petrou S; Fraser J; Sidebotham P
Lancet
2014
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).
Journal Article
<a href="http://doi.org/10.1016/S0140-6736(14)61372-6" target="_blank" rel="noreferrer">10.1016/S0140-6736(14)61372-6</a>
An update on master's degrees in medical education
Humans; Education; Curriculum; Schools; Medical; Graduate; Developed Countries; Information Storage and Retrieval
Planning and implementing educational programs in medicine optimally requires a background in educational theory and practice. An aven
2005
Cohen R; Murnaghan L; Collins JJ; Pratt D
Medical Teacher
2005
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).
Journal Article
<a href="http://doi.org/10.1080/01421590500315170" target="_blank" rel="noreferrer">10.1080/01421590500315170</a>
Health care access and utilization among pregnant adolescents
Delivery of Health Care; Female; Humans; United States; Pregnancy; Adult; Age Factors; New York; Risk Factors; North America; adolescent; Adolescent Transitions; Health; Pregnancy in Adolescence; Adolescent Health Services/utilization; Adolescents; Primary Health Care/utilization; Developed Countries; Americas; Demographic Factors; Health Services Accessibility/statistics & numerical data; Northern America; Population; Population Characteristics; Pregnant Women; Prenatal Care/utilization; Reproductive Health; Research Report; Youth
PURPOSE: To assess access to and use of health care by adolescents prior to their becoming pregnant. METHODS: An interviewer-administered questionnaire was completed by all pregnant adolescents (n = 65) entering the Rochester Adolescent Maternity Program (RAMP) between January and June 1994. Questions addressed access and utilization issues including routine care and other services used, and existence of a regular source of care prior to pregnancy. RESULTS: Sixty-one adolescents (94%) completed questionnaires. Almost all (93%) had made a doctor or clinic visit, and 77% had had a checkup in the prior year. Most had Medicaid (85%) or private insurance (13%). The median number of visits to a regular source of care was 2.0 (range 0-10). Most frequently reported sources of regular care were hospital clinics (43%), community health centers (26%), and private physician offices (15%). Two-thirds (66%) reported having used multiple sources of care. Of those who used other sources in addition to a primary care source, 40% used reproductive health clinics. Adolescents whose primary care source was a traditional physician's office were more likely to also use reproductive health clinics than those who reported using more comprehensive primary care sources. CONCLUSIONS: Most pregnant adolescents in this sample had previously used routine primary care, usually in hospital clinics or health centers. Many of those adolescents also use multiple sources of care, most often for reproductive services. Access to reproductive health services does not seem to have been a problem for these adolescents prior to their pregnancies.; PIP: An interviewer-administered questionnaire was administered to all 65 pregnant adolescents entering the Rochester Adolescent Maternity Program (RAMP) between January and June 1994 as part of a study to measure access to and the use of health care by respondents before they became pregnant. 61 (94%) young women completed the questionnaires. 93% had made a doctor or clinic visit and 77% had had a checkup in the prior year. 85% had Medicaid and 13% had private insurance. The median number of visits to a regular source of care was 2.0 in the range of 0-10. 43% reported receiving regular care from hospital clinics, 26% from community health centers, and 15% from private physician offices. 66% reported having used multiple sources of care. 40% of those who used other sources in addition to a primary care source used reproductive health clinics. Adolescents whose source of primary care was a traditional physician's office were more likely to also use reproductive health clinics than those who reported using more comprehensive primary care sources.
1997
Galbraith AA; Stevens J; Klein JD
The Journal Of Adolescent Health : Official Publication Of The Society For Adolescent Medicine
1997
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Journal Article
<a href="http://doi.org/10.1016/S1054-139X(97)00124-9" target="_blank" rel="noreferrer">10.1016/S1054-139X(97)00124-9</a>
Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review
Patient Satisfaction; Psychology; quality of life; Non-U.S. Gov't; Human; Support; Developed Countries; Social; patient care team; Neoplasms/therapy; Outcome Assessment (Health Care); Palliative Care/economics/organization & administration/utilization
The objective of the study was to determine whether teams providing specialist palliative care improve the health outcomes of patients with advanced cancer and their families or carers when compared to conventional services. The study involved a systematic literature review of published research. The source of the data included studies identified from a systematic search of computerized databases (Medline, psychINFO, CINAHL and BIDS to the end of 1996), hand-searching specialist palliative care journals, and studying bibliographies and reference lists. The inclusion criteria for articles were that the study considered the use of specialist palliative care teams caring for patients with advanced cancer. Articles were assessed and data extracted and synthesized, with studies graded according to design. A variety of outcomes were considered by the authors. These addressed aspects of symptom control, patient and family or carer satisfaction, health care utilization and cost, place of death, psychosocial indices and quality of life. Overall, 18 relevant studies were identified, including five randomized controlled trials. Improved outcomes were seen in the amount of time spent at home by patients, satisfaction by both patients and their carers, symptom control, a reduction in the number of inpatient hospital days, a reduction in overall cost, and the patients' likelihood of dying where they wished to for those receiving specialist care from a multiprofessional palliative care team. It was concluded that all evaluations were of services considered to be leading the field, or were pioneering training and treatments. However, when compared to conventional care, there is evidence that specialist teams in palliative care improve satisfaction and identify and deal with more patient and family needs. Moreover, multiprofessional approaches to palliative care reduce the overall cost of care by reducing the amount of time patients spend in acute hospital settings.
1998
Hearn J; Higginson IJ
Palliative Medicine
1998
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Journal Article
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
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<a href="http://doi.org/10.1001/jamapediatrics.2017.0197" target="_blank" rel="noreferrer">10.1001/jamapediatrics.2017.0197</a>