scholarly journals The Voice of Parents of Children With a Congenital Anomaly – A EUROlinkCAT Study

2021 ◽  
Vol 9 ◽  
Author(s):  
Kristina Garne Holm ◽  
Amanda Julie Neville ◽  
Anna Pierini ◽  
Anna Latos Bielenska ◽  
Anna Jamry-Dziurla ◽  
...  
Keyword(s):  
Congenital Anomaly ◽  
Focus Groups ◽  
Congenital Anomalies ◽  
Cleft Lip ◽  
Research Priorities ◽  
Reciprocal Relationship ◽  
Future Research ◽  
Health And Social Care ◽  
Need For Support ◽  
Families With Children

EUROlinkCAT aims to investigate the health and educational outcomes of children with congenital anomalies for the first 10 years of their lives. We also aim to facilitate the development of a more reciprocal relationship between families with children with congenital anomalies, health and social care professionals, and researchers by conducting focus groups. The aim of the focus groups and parent interviews was to investigate parental experiences of having a child with a heart defect requiring surgery, cleft lip, spina bifida or Down Syndrome and to identify their research priorities. In total, seven interviews with 12 parents and eight focus groups with 58 parents and two caregivers were conducted in four European countries. We found that parents request more positive information with a focus on quality of life and what the children can achieve rather than solely on the negative aspects and limitations of the congenital anomaly. Some parents also highlighted discrepancies between the family's need for support and the lack of support received from the local authority. Finally, it was challenging for the parents to address specific research priorities. Future research should therefore focus on the potential of a child with a congenital anomaly.

scholarly journals Public priorities for osteoporosis and fracture research: results from a focus group study

2020 ◽  
Vol 15 (1) ◽  
Author(s):  
Ashley Hawarden ◽  
Clare Jinks ◽  
Waheed Mahmood ◽  
Laurna Bullock ◽  
Steven Blackburn ◽  
...  
Keyword(s):  
Focus Groups ◽  
National Survey ◽  
Public Awareness ◽  
Research Priorities ◽  
Fragility Fractures ◽  
Healthcare Services ◽  
Future Research ◽  
The Public ◽  
Delays In Diagnosis

Abstract Summary Four focus groups were conducted with members of the public to identify important areas for future osteoporosis research. Participants identified priorities to increase public awareness of osteoporosis, reduce delays in diagnosis, improve communication between healthcare providers and to improve follow-up and information provision about causes of osteoporosis, medication harms and prognosis. Purpose Patients and the public must be involved in setting research agendas to ensure relevant and impactful questions are prioritised. This study aimed to understand what people living with osteoporosis and fragility fractures felt was important to research, to inform the content of a national survey on research priorities in this area. Methods Focus groups were conducted with members of the public with experience of osteoporosis or fragility fractures. The topic guide was co-developed with a patient and public involvement research user group, and explored participants’ experiences of osteoporosis including diagnosis, management and effect upon their lives, what aspects of their ongoing care was most important to them and what about their care or condition could be improved. Focus groups were audio-recorded, transcribed and analysed thematically. Results A total of twenty-three participants were recruited to four focus groups. Analysis identified two main themes: challenges in living with osteoporosis and healthcare services for osteoporosis. Information needs was a further cross-cutting theme. Participants called for increased public awareness of osteoporosis and wanted healthcare services to address conflicting messages about diet, exercise and medication. Participants described long delays in diagnosis, poor communication between primary and secondary care and the need for structured follow-up as important areas for future research to address. Conclusion The findings from this study provide an understanding of research priorities from the perspective of patients and the public, have informed the content of a national survey and have implications for patient education, health services research and policy.

scholarly journals Association of other congenital anomalies in children with cleft lip and palate: a prospective hospital based observational study

2019 ◽  
Vol 6 (3) ◽  
pp. 1059
Author(s):  
Padmasani Venkat Ramanan ◽  
Rajesh Balan ◽  
Jyotsna Murthy ◽  
Syed Altaf Hussain
Keyword(s):  
Congenital Anomaly ◽  
Congenital Anomalies ◽  
Congenital Malformations ◽  
Congenital Heart ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Associated Anomalies ◽  
Live Births ◽  
Associated Malformations ◽  
Syndrome Association

Background: Cleft lip and palate is a common congenital anomaly affecting approximately 1 in 700 live births in south Asia. It is often associated with syndromes and other malformations but the exact incidence of these in Asians is not known. The present study was carried out to determine the association of other congenital anomalies in children with cleft.Methods: The study was carried out in the patients attending the Cleft centre of our Hospital. They were examined for other major external congenital malformations and syndrome association.  Where ever relevant, appropriate investigations were done.Results: Of the total of 2367 children examined, 262 (11.06%) had congenital malformations.  Among the non-syndromic children, 9% had associated malformations.  The commonest was congenital heart disease (1.4%) following by genitourinary and skeletal anomalies.  The highest number of anomalies was seen in patients with cleft palate alone (24.89%). 1.4% patients had identifiable syndromes.Conclusions: The study emphasizes the need for a thorough examination of all children with cleft.  The overall lower incidence of syndromic clefts and associated anomalies in present study suggests that other etiological factors may be involved in our country.

scholarly journals Identifying research priorities for occupational therapy in the UK: A James Lind Alliance Priority Setting Partnership

2021 ◽  
pp. 030802262110265
Author(s):  
Jo Watson ◽  
Katherine Cowan ◽  
Hannah Spring ◽  
Jenny Mac Donnell ◽  
Ruth Unstead-Joss
Keyword(s):  
Lived Experience ◽  
Nominal Group Technique ◽  
Research Priorities ◽  
Occupational Therapists ◽  
Evidence Base ◽  
Nominal Group ◽  
Future Research ◽  
Health And Social Care ◽  
James Lind Alliance ◽  
The Uk

Introduction As the scope and nature of practice evolves in an ever-changing health and social care landscape, it is imperative the profession continues to expand the evidence base underpinning interventions. The Royal College of Occupational Therapists partnered with the James Lind Alliance to bring together people with lived experience, occupational therapists and other people working in the health and care sector to identify contemporary research priorities for the profession in the United Kingdom. Method The JLA’s well-established methodology was adopted. An opening consultation survey gathered unanswered questions. Analysis of responses and evidence checking preceded an initial prioritisation survey. The final prioritisation workshop drew on nominal group technique. Findings 927 respondents submitted 2193 questions. Those within the project’s scope were captured in 66 overarching summary questions using thematic analysis. These were initially ranked by 1140 respondents. 18 questions comprising the 10 most highly ranked by people with lived experience and by those with professional experience were considered by 19 participants in the final workshop. Together, they reached consensus on the Top 10 priorities. Conclusion These research priorities provide a contemporary framework influencing and guiding future research, ensuring it addresses the issues of greatest importance to people accessing and delivering services.

scholarly journals Prevalence of clinically-evident congenital anomalies in the Western highlands of Guatemala

2020 ◽  
Vol 17 (S2) ◽  
Author(s):  
Lester Figueroa ◽  
Ana Garces ◽  
K. Michael Hambidge ◽  
Elizabeth M. McClure ◽  
Janet Moore ◽  
...  
Keyword(s):  
Congenital Anomaly ◽  
Nervous System ◽  
Neonatal Mortality ◽  
Congenital Anomalies ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Survival Rates ◽  
Population Based ◽  
Global Network ◽  
Icd 10

Abstract Background Congenital anomalies are a significant cause of death and disability for infants, especially in low and middle-income countries (LMIC), where 95% of all deaths due to anomalies occur. Limited data on the prevalence and survival of infants with congenital anomalies are available from Central America. Estimates have indicated that 53 of every 10,000 live births in Guatemala are associated with a congenital anomaly. We aim to report on the incidence and survival of infants with congenital anomalies from a population-based registry and classify the anomalies according to the International Classification of Disease, Tenth Revision (ICD-10). Methods We conducted a planned secondary analysis of data from the Maternal Newborn Health Registry (MNHR), a prospective, population-based study carried out by the Global Network for Women’s and Children’s Health Research in seven research sites. We included all deliveries between 2014 and 2018 in urban and rural settings in Chimaltenango, in the Western Highlands of Guatemala. These cases of clinically evident anomalies were reported by field staff and reviewed by medically trained staff, who classified them according to ICD – 10 categories. The incidence of congenital anomalies and associated stillbirth, neonatal mortality, and survival rates were determined for up to 42 days. Results Out of 60,142 births, 384 infants were found to have a clinically evident congenital anomaly (63.8 per 10,000 births). The most common were anomalies of the nervous system (28.8 per 10,000), malformations and deformations of the musculoskeletal system (10.8 per 10,000), and cleft lip and palate (10.0 per 10,000). Infants born with nervous system anomalies had the highest stillbirth and neonatal mortality rates (14.6 and 9.0 per 10,000, respectively). Conclusions This is the first population-based report on congenital anomalies in Guatemala. The rates we found of overall anomalies are higher than previously reported estimates. These data will be useful to increase the focus on congenital anomalies and hopefully increase the use of interventions of proven benefit. Trial registration ClinalTrial.gov ID: NCT01073475.

scholarly journals Suffering eases over time: the experience of families in the care of children with congenital anomalies

2009 ◽  
Vol 17 (4) ◽  
pp. 495-500 ◽  
Author(s):  
Cristiana Araújo Guiller ◽  
Giselle Dupas ◽  
Myriam Aparecida Mandetta Pettengill
Keyword(s):  
Congenital Anomaly ◽  
Data Analysis ◽  
Data Collection ◽  
Nursing Care ◽  
Congenital Anomalies ◽  
Observation Data ◽  
Structured Interviews ◽  
Axial Coding ◽  
Families With Children ◽  
Over Time

This study aimed to understand the experience of caring for a child with a congenital anomaly from the family's perspective. Symbolic Interactionism and Grounded Theory were the theoretical and methodological references, respectively. Data collection was carried out with eight families with children having congenital anomalies through semi-structured interviews and participating observation. Data analysis reached axial coding. Results revealed two phenomena in the experience of families in delivering care to children with congenital anomalies - Facing an initially difficult experience and suffering eases over time. We concluded that the understanding of this experience supports the need to reconsider the nursing care provided to families in the care of children with congenital anomalies.

scholarly journals Risk Factors Associated with Non-Cardiac Congenital Anomalies of Fetus Admitted in Chittagong Medical College Hospital

2020 ◽  
Vol 13 (1) ◽  
pp. 40-45
Author(s):  
Jahanara Akhter ◽  
Suman Nazmul Hosain ◽  
Zakia Mamataz ◽  
Sulekha Bhattacharjee ◽  
Chowdhury Sharmila Barua
Keyword(s):  
Diabetes Mellitus ◽  
Risk Factors ◽  
Congenital Anomaly ◽  
Congenital Anomalies ◽  
Cleft Lip ◽  
First Trimester ◽  
Obstetrics And Gynecology ◽  
High Grade ◽  
High Grade Fever ◽  
The Mean

Background: Congenital anomalies make an important contribution to infant mortality and they remain a leading cause of death in many countries of the world. Many babies also died in our country due to congenital anomalies. Methods: This retrospective cross-sectional study was conducted at the Departments of Obstetrics and Gynecology of CMCH between October 2016 to March 2017. Objective of the study was to find out the risk factors of non-cardiac congenital anomaly of fetus. The study population of those women who delivered a baby with different non-cardiac congenital anomalies admitted in Departments of Obstetrics and Gynecology of CMCH. Results: The mean maternal age was found 26.6±5.6 years and the mean paternal age was found 35.8±7.9 years. 28 (28.0%) patients had hydrocephalus, 25 (25.0%) had Anencephaly, 7 (7.0%) had Omphalocele, 7 (7.0%) had Hydrops fetalis, 6 (6.0%) had cleft lip, 6 (6.0%) had cleft palate, 4 (4.0%) had cleft lip and cleft palate. 20 (20.0%) patients had consanguinity, history of high-grade fever with rash in first trimester was 12 (12.0%). 16(16.0%) was diabetes mellitus. Majority (63.0%) patients belonged to gestational age 16-28 weeks. The mean gestational age was found 29.5±7.1 weeks with ranged from 16 to 42 weeks. Majority (89.0%) were singleton pregnancy. 60% reveal congenital anomaly in USG. Conclusion: Risk factors of non-cardiac congenital anomalies were consanguinity, maternal obesity, high grade fever with rash in first trimester due to viral infection, diabetes mellitus (uncontrolled), uncontrolled gestational diabetes mellitus, previous birth defect, inadequate intake of folic acid in first trimester, blood group Rh negative, male baby. Hydrocephalus and anencephaly were the most common congenital anomalies. Cardiovasc. j. 2020; 13(1): 40-45

scholarly journals A genome-wide scan of cleft lip triads identifies parent-of-origin interaction effects between ANK3 and maternal smoking, and between ARHGEF10 and alcohol consumption

F1000Research ◽  
2019 ◽  
Vol 8 ◽  
pp. 960
Author(s):  
Øystein Ariansen Haaland ◽  
Julia Romanowska ◽  
Miriam Gjerdevik ◽  
Rolv Terje Lie ◽  
Håkon Kristian Gjessing ◽  
...  
Keyword(s):  
Cleft Lip ◽  
Genome Wide Association Study ◽  
Environmental Exposures ◽  
Future Research ◽  
Maternal Cigarette Smoking ◽  
Genome Wide ◽  
A Genome ◽  
Parent Of Origin ◽  
Genetic And Environmental Factors ◽  
Families With Children

Background: Although both genetic and environmental factors have been reported to influence the risk of isolated cleft lip with or without cleft palate (CL/P), the exact mechanisms behind CL/P are still largely unaccounted for. We recently developed new methods to identify parent-of-origin (PoO) interactions with environmental exposures (PoOxE) and now apply them to data from a genome-wide association study (GWAS) of families with children born with isolated CL/P. Methods: Genotypes from 1594 complete triads and 314 dyads (1908 nuclear families in total) with CL/P were available for the current analyses. Of these families, 1024 were Asian, 825 were European and 59 had other ancestries. After quality control, 341,191 SNPs remained from the original 569,244. The exposures were maternal cigarette smoking, use of alcohol, and use of vitamin supplements in the periconceptional period. Our new methodology detects if PoO effects are different across environmental strata and is implemented in the R-package Haplin. Results: Among Europeans, there was evidence of a PoOxSmoke effect for ANK3 with three SNPs (rs3793861, q=0.20, p=2.6e-6; rs7087489, q=0.20, p=3.1e-6; rs4310561, q=0.67, p=4.0e-5) and a PoOxAlcohol effect for ARHGEF10 with two SNPs (rs2294035, q=0.32, p=2.9e-6; rs4876274, q=0.76, p=1.3e-5). Conclusion: Our results indicate that the detected PoOxE effects have a plausible biological basis, and thus warrant replication in other independent cleft samples. Our demonstration of the feasibility of identifying complex interactions between relevant environmental exposures and PoO effects offers new avenues for future research aimed at unravelling the complex etiology of cleft lip defects.

Current Postvention Research and Priorities for the Future

Crisis ◽  
2017 ◽  
Vol 38 (3) ◽  
pp. 202-206 ◽  
Author(s):  
Karl Andriessen ◽  
Dolores Angela Castelli Dransart ◽  
Julie Cerel ◽  
Myfanwy Maple
Keyword(s):  
Social Life ◽  
Online Survey ◽  
Research Priorities ◽  
Future Research ◽  
Physical And Mental Health ◽  
Intercultural Collaboration ◽  
The Social ◽  
The Future ◽  
Suicide Bereavement ◽  
Ethical Approval

Abstract. Background: Suicide can have a lasting impact on the social life as well as the physical and mental health of the bereaved. Targeted research is needed to better understand the nature of suicide bereavement and the effectiveness of support. Aims: To take stock of ongoing studies, and to inquire about future research priorities regarding suicide bereavement and postvention. Method: In March 2015, an online survey was widely disseminated in the suicidology community. Results: The questionnaire was accessed 77 times, and 22 records were included in the analysis. The respondents provided valuable information regarding current research projects and recommendations for the future. Limitations: Bearing in mind the modest number of replies, all from respondents in Westernized countries, it is not known how representative the findings are. Conclusion: The survey generated three strategies for future postvention research: increase intercultural collaboration, increase theory-driven research, and build bonds between research and practice. Future surveys should include experiences with obtaining research grants and ethical approval for postvention studies.

scholarly journals Applied sport science and medicine of women’s rugby codes: a systematic-scoping review and consensus on future research priorities protocol

2021 ◽  
Vol 7 (3) ◽  
pp. e001108
Author(s):  
Omar Heyward ◽  
Stacey Emmonds ◽  
Gregory Roe ◽  
Sean Scantlebury ◽  
Keith Stokes ◽  
...  
Keyword(s):  
Scoping Review ◽  
Research Priorities ◽  
Consensus Method ◽  
Future Research ◽  
Delphi Consensus ◽  
Medicine Research ◽  
Sport Science ◽  
Priority Areas ◽  
Wide Range ◽  
Scoping Reviews

Women’s rugby (rugby league, rugby union and rugby sevens) has recently grown in participation and professionalisation. There is under-representation of women-only cohorts within applied sport science and medicine research and within the women’s rugby evidence base. The aims of this article are: Part 1: to undertake a systematic-scoping review of the applied sport science and medicine of women’s rugby, and Part 2: to develop a consensus statement on future research priorities. This article will be designed in two parts: Part 1: a systematic-scoping review, and Part 2: a three-round Delphi consensus method. For Part 1, systematic searches of three electronic databases (PubMed (MEDLINE), Scopus, SPORTDiscus (EBSCOhost)) will be performed from the earliest record. These databases will be searched to identify any sport science and medicine themed studies within women’s rugby. The Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping Reviews will be adhered to. Part 2 involves a three-round Delphi consensus method to identify future research priorities. Identified experts in women’s rugby will be provided with overall findings from Part 1 to inform decision-making. Participants will then be asked to provide a list of research priority areas. Over the three rounds, priority areas achieving consensus (≥70% agreement) will be identified. This study has received institutional ethical approval. When complete, the manuscript will be submitted for publication in a peer-reviewed journal. The findings of this article will have relevance for a wide range of stakeholders in women’s rugby, including policymakers and governing bodies.

Police BWCs as ‘Neutral Observers’: Perceptions of public defenders

2020 ◽  
Author(s):  
Janne E Gaub ◽  
Carolyn Naoroz ◽  
Aili Malm
Keyword(s):  
Criminal Justice ◽  
Focus Groups ◽  
Qualitative Data ◽  
Future Research ◽  
End User ◽  
Public Defenders

Abstract The research on police body-worn cameras (BWCs) has rapidly expanded to evaluate the technology’s impact on a range of police outcomes. Far fewer studies have addressed the various effects on downstream criminal justice actors, and those that do have focused almost entirely on prosecutors. Thus, public defenders have remained on the periphery of the police BWC discussion, despite playing an important role as an end-user of the technology. This study draws on qualitative data from focus groups with public defenders in the Commonwealth of Virginia to discuss the perception of BWCs as neutral observers in a police–citizen encounter. We then provide implications and recommend avenues for future research.

Sign in / Sign up

Export Citation Format

Share Document