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  1. Artikel ; Online: What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders.

    Scott, Hannah May / Coombes, Lucy / Braybrook, Debbie / Harðardóttir, Daney / Roach, Anna / Bristowe, Katherine / Bluebond-Langner, Myra / Fraser, Lorna K / Downing, Julia / Farsides, Bobbie / Murtagh, Fliss Em / Ellis-Smith, Clare / Harding, Richard

    Palliative medicine

    2024  Band 38, Heft 4, Seite(n) 471–484

    Abstract: Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is ... ...

    Abstract Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited.
    Aim: To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions.
    Design: Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research.
    Setting/participants: A total of
    Results: All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage 'buy-in' and administering measures with known and trusted professional.
    Conclusions: Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation.
    Mesh-Begriff(e) Adult ; Child ; Humans ; Adolescent ; Cross-Sectional Studies ; Palliative Care ; Qualitative Research ; Caregivers ; Outcome Assessment, Health Care
    Sprache Englisch
    Erscheinungsdatum 2024-03-13
    Erscheinungsland England
    Dokumenttyp Journal Article
    ZDB-ID 639247-7
    ISSN 1477-030X ; 0269-2163
    ISSN (online) 1477-030X
    ISSN 0269-2163
    DOI 10.1177/02692163241234797
    Datenquelle MEDical Literature Analysis and Retrieval System OnLINE

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  2. Artikel ; Online: Medical Student Perspectives on Choosing a Career in Vascular Surgery.

    DeAngelo, Madeline / Hakim, Anne / Darelli-Anderson, Anna M / Harding, Joel P / Smith, Brigitte K

    Annals of vascular surgery

    2021  Band 83, Seite(n) 152–157

    Abstract: Background: Vascular surgery is facing an impending workforce shortage as the population ages and the demand for vascular surgical services increases. The integrated vascular surgery residency (0+5) paradigm is well-established and provides a mechanism ... ...

    Abstract Background: Vascular surgery is facing an impending workforce shortage as the population ages and the demand for vascular surgical services increases. The integrated vascular surgery residency (0+5) paradigm is well-established and provides a mechanism to increase the number of board-certified vascular surgeons. Recruitment of medical students to these programs has proven challenging with unfilled positions in each of the past 2 years. The aim of this study is to explore factors that influence medical students' interest in vascular surgery and their decision to ultimately pursue a career in the field.
    Methods: Medical students listed on the Society for Vascular Surgery "Find a VSIG (Vascular Surgery Interest Group)" webpage were contacted via email to participate in the study. A snowball sampling technique was employed to recruit additional participants, including recent medical school graduates who had matched into a 0+5 program. Fifteen students participated in 5 focus groups. Directed content analysis was employed to qualitatively analyze focus group transcripts.
    Results: Five domains were identified as influencing students' decision to pursue vascular surgery. Experiential learning facilitated early exploration of the field. The intellectuality of the specialty was a feature that attracted students to vascular surgery. In addition, the professional identify of vascular surgeons as comprehensive care providers was appealing. Students identified with their mentors' relationships as observed during clinical encounters. Long-term mentorship was important in sustaining students' interest.
    Conclusion: Medical students pursue a career in vascular surgery based on early exposure to the specialty, experiential learning through hands-on VSIG events, clinical experiences, and longitudinal faculty mentorship. The unique aspects of the specialty, including professional identity and intellectuality, should be highlighted to both attract and maintain students' interest in the field. These findings can be used by national vascular surgery leaders, practicing vascular surgeons, and faculty and student leadership of VSIGs to optimize recruitment programs and increase the vascular surgery workforce.
    Mesh-Begriff(e) Career Choice ; Humans ; Specialties, Surgical ; Students, Medical ; Surveys and Questionnaires ; Treatment Outcome ; Vascular Surgical Procedures/education
    Sprache Englisch
    Erscheinungsdatum 2021-12-20
    Erscheinungsland Netherlands
    Dokumenttyp Journal Article
    ZDB-ID 1027366-9
    ISSN 1615-5947 ; 0890-5096
    ISSN (online) 1615-5947
    ISSN 0890-5096
    DOI 10.1016/j.avsg.2021.11.015
    Datenquelle MEDical Literature Analysis and Retrieval System OnLINE

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  3. Artikel ; Online: Exposure to microplastics and human reproductive outcomes: A systematic review.

    Hunt, Kathryn / Davies, Anna / Fraser, Abigail / Burden, Christy / Howell, Amy / Buckley, Kirsten / Harding, Sam / Bakhbakhi, Danya

    BJOG : an international journal of obstetrics and gynaecology

    2024  Band 131, Heft 5, Seite(n) 675–683

    Abstract: Background: Microplastics, produced through degradation of environmental plastic pollution, have been detected in human tissues including placenta and fetal meconium. Cell culture and animal studies have demonstrated potential reproductive toxicity of ... ...

    Abstract Background: Microplastics, produced through degradation of environmental plastic pollution, have been detected in human tissues including placenta and fetal meconium. Cell culture and animal studies have demonstrated potential reproductive toxicity of these particles; however, their association with adverse fertility or pregnancy outcomes in humans is not known.
    Objectives: To synthesise evidence for the presence of microplastics in human reproductive tissue and their associations with environmental exposures and reproductive outcomes.
    Search strategy: MEDLINE, Embase, Emcare, CINAHL, ClinicalTrials.gov and ICTRP were searched from inception to 03/02/2023.
    Selection criteria: Studies of human participants, assessing presence of microplastics in reproductive tissues, environmental exposures to microplastics, and fertility- or pregnancy-related outcomes.
    Data collection and analysis: Two independent reviewers selected studies and extracted data on study characteristics, microplastics detected, environmental exposures and reproductive outcomes. Narrative synthesis was performed due to methodological heterogeneity.
    Main results: Of 1094 citations, seven studies were included, covering 96 participants. Microplastics composed of 16 different polymer types were detected in both placental and meconium samples. Two studies reported associations between lifestyle factors (daily water intake, use of scrub cleanser or toothpaste, bottled water and takeaway food) and placental microplastics. One study reported associations between meconium microplastics and reduced microbiota diversity. One reported placental microplastic levels correlated with reduced birthweights and 1-minute Apgar scores.
    Conclusions: There is a need for high-quality observational studies to assess the effects of microplastics on human reproductive health.
    Mesh-Begriff(e) Female ; Humans ; Pregnancy ; Microplastics/toxicity ; Placenta ; Plastics/toxicity ; Pregnancy Outcome ; Prenatal Care
    Chemische Substanzen Microplastics ; Plastics
    Sprache Englisch
    Erscheinungsdatum 2024-01-29
    Erscheinungsland England
    Dokumenttyp Journal Article ; Systematic Review
    ZDB-ID 2000931-8
    ISSN 1471-0528 ; 0306-5456 ; 1470-0328
    ISSN (online) 1471-0528
    ISSN 0306-5456 ; 1470-0328
    DOI 10.1111/1471-0528.17756
    Datenquelle MEDical Literature Analysis and Retrieval System OnLINE

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  4. Artikel ; Online: Primary palliative care in low- and middle-income countries: A systematic review and thematic synthesis of the evidence for models and outcomes.

    Peeler, Anna / Afolabi, Oladayo / Adcock, Michael / Evans, Catherine / Nkhoma, Kennedy / van Breevoort, Dorothee / Farrant, Lindsay / Harding, Richard

    Palliative medicine

    2024  , Seite(n) 2692163241248324

    Abstract: Background: Serious health-related suffering is predicted to double in low- and middle-income countries by 2060. Primary care offers the best opportunity to meet Universal Health Coverage in an equitable way. Primary palliative care growth should be ... ...

    Abstract Background: Serious health-related suffering is predicted to double in low- and middle-income countries by 2060. Primary care offers the best opportunity to meet Universal Health Coverage in an equitable way. Primary palliative care growth should be evidence-based to ensure provision is feasible, acceptable and culturally congruent.
    Aim: To identify the current evidence related to primary palliative care and to describe how primary palliative is defined in this setting, dominant typologies of care and meaningful outcome measures in LMICs.
    Design: A systematic review and thematic synthesis was conducted. We described the nature, extent and distribution of published literature on primary palliative care in low- and middle-income countries, use thematic synthesis to characterize typologies of primary palliative care and design a process model for care delivery in low- and middle-income countries.
    Data sources: Medline, Psychinfo, Global Health, Embase and CINAHL.
    Results: Thirty-five publications were included. Nearly half took place in Asia (
    Conclusion: Evidence supporting primary palliative care in low- and middle-income countries is limited, and much of the published literature comes from Asia and southern Africa. Health systems in low- and middle-income countries have unique strengths and needs that affect primary palliative care services that should guide how services evolve to meet future need.
    Sprache Englisch
    Erscheinungsdatum 2024-05-01
    Erscheinungsland England
    Dokumenttyp Journal Article ; Review
    ZDB-ID 639247-7
    ISSN 1477-030X ; 0269-2163
    ISSN (online) 1477-030X
    ISSN 0269-2163
    DOI 10.1177/02692163241248324
    Datenquelle MEDical Literature Analysis and Retrieval System OnLINE

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  5. Artikel ; Online: 'I just need a plan': Consumer perceptions of waiting for healthcare.

    Harding, Katherine E / Lewis, Annie K / Taylor, Nicholas F

    Journal of evaluation in clinical practice

    2023  Band 29, Heft 6, Seite(n) 976–983

    Abstract: Rationale: Wait lists are common in the provision of publicly funded services in outpatient and community settings.: Aims and objectives: We aimed to explore the experiences of consumers on wait lists across a broad range of services and to ... ...

    Abstract Rationale: Wait lists are common in the provision of publicly funded services in outpatient and community settings.
    Aims and objectives: We aimed to explore the experiences of consumers on wait lists across a broad range of services and to understand the impact of delays in access to services on people's lives.
    Methods: Consumers with experience of being on a wait list for an outpatient or community-based health service participated in one of three focus groups. Data were transcribed and analysed inductively using a thematic approach.
    Results: Waiting for healthcare has detrimental impacts on health and well-being. Consumers on wait lists want their health needs addressed, but they also want the ability to plan, clear communication and to feel like someone cares. Instead, they feel forgotten by impersonal and inflexible systems with very little communication, with emergency departments and general practitioners often left to fill in the gaps.
    Conclusions: More consumer-centred approaches are needed for access systems for outpatient and community services, featuring honesty about what services can realistically be provided, early access to initial assessment and information and clear lines of communication.
    Mesh-Begriff(e) Humans ; Health Services Accessibility ; Waiting Lists ; Focus Groups
    Sprache Englisch
    Erscheinungsdatum 2023-03-01
    Erscheinungsland England
    Dokumenttyp Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 1327355-3
    ISSN 1365-2753 ; 1356-1294
    ISSN (online) 1365-2753
    ISSN 1356-1294
    DOI 10.1111/jep.13821
    Datenquelle MEDical Literature Analysis and Retrieval System OnLINE

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  6. Artikel ; Online: Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members.

    Coombes, Lucy / Harðardóttir, Daney / Braybrook, Debbie / Roach, Anna / Scott, Hannah / Bristowe, Katherine / Ellis-Smith, Clare / Downing, Julia / Bluebond-Langner, Myra / Fraser, Lorna K / Murtagh, Fliss E M / Harding, Richard

    The patient

    2023  Band 16, Heft 5, Seite(n) 473–483

    Abstract: Background: Self-reported health data from children with life-limiting conditions is rarely collected. To improve acceptability and feasibility of child and family-centred outcome measures for children, they need to be designed in a way that reflects ... ...

    Abstract Background: Self-reported health data from children with life-limiting conditions is rarely collected. To improve acceptability and feasibility of child and family-centred outcome measures for children, they need to be designed in a way that reflects preferences, priorities and abilities.
    Objectives: The aim was to identify preferences for patient-reported outcome measure design (recall period, response format, length, administration mode) to improve the feasibility, acceptability, comprehensibility and relevance of a child and family-centred outcome measure, among children with life-limiting conditions and their family members.
    Method: A semi-structured qualitative interview study seeking the perspectives of children with life-limiting conditions, their siblings and parents on measure design was conducted. Participants were purposively sampled and recruited from nine UK sites. Verbatim transcripts were analysed using framework analysis.
    Results: A total of 79 participants were recruited: 39 children aged 5-17 years (26 living with a life-limiting condition; 13 healthy siblings) and 40 parents (of children aged 0-17 years). Children found a short recall period and a visually appealing measure with ten questions or fewer most acceptable. Children with life-limiting conditions were more familiar with using rating scales such as numeric and Likert than their healthy siblings. Children emphasised the importance of completing the measure alongside interactions with a healthcare professional to enable them to talk about their responses. While parents assumed that electronic completion methods would be most feasible and acceptable, a small number of children preferred paper.
    Conclusions: This study demonstrates that children with life-limiting conditions can engage in communicating preferences regarding the design of a patient-centred outcome measure. Where possible, children should be given the opportunity to participate in the measure development process to enhance acceptability and uptake in clinical practice. Results of this study should be considered in future research on outcome measure development in children.
    Mesh-Begriff(e) Child ; Humans ; Adolescent ; Family ; Parents ; Palliative Care ; Health Personnel ; Health Status
    Sprache Englisch
    Erscheinungsdatum 2023-05-23
    Erscheinungsland New Zealand
    Dokumenttyp Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 2466680-4
    ISSN 1178-1661 ; 1178-1653
    ISSN (online) 1178-1661
    ISSN 1178-1653
    DOI 10.1007/s40271-023-00627-w
    Datenquelle MEDical Literature Analysis and Retrieval System OnLINE

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  7. Artikel ; Online: Spiritual, religious, and existential concerns of children and young people with life-limiting and life-threatening conditions: A qualitative interview study.

    Scott, Hannah May / Coombes, Lucy / Braybrook, Debbie / Roach, Anna / Harðardóttir, Daney / Bristowe, Katherine / Ellis-Smith, Clare / Downing, Julia / Murtagh, Fliss Em / Farsides, Bobbie / Fraser, Lorna K / Bluebond-Langner, Myra / Harding, Richard

    Palliative medicine

    2023  Band 37, Heft 6, Seite(n) 856–865

    Abstract: Background: Despite being a core domain of palliative care, primary data on spiritual and existential concerns has rarely been collected among children with life-limiting and life-threatening conditions and their families. Existing evidence has tended ... ...

    Abstract Background: Despite being a core domain of palliative care, primary data on spiritual and existential concerns has rarely been collected among children with life-limiting and life-threatening conditions and their families. Existing evidence has tended to focus on the religious aspects among children with cancer.
    Aim: To identify the spiritual needs of children with life-limiting and life-threatening conditions.
    Design: Cross-sectional semi-structured, qualitative interview study with children, families and health and social care professionals. Verbatim transcripts were analysed using Framework analysis.
    Setting/participants: Purposively sampled children with life-limiting and life-threatening conditions, their parents and siblings, health and social care professionals recruited from six hospitals and three children's hospices in the UK, and commissioners of paediatric palliative care services recruited through networks and a national charity.
    Results: One hundred six participants were interviewed: 26 children (5-17 years), 53 family members (parents/carers of children 0-17 years and siblings (5-17 years)), 27 professionals (health and social care professionals and commissioners of paediatric palliative care). Themes included: living life to the fullest, meaning of life and leaving a legacy, uncertainty about the future, determination to survive, accepting or fighting the future and role of religion. Children as young as 5 years old identified needs or concerns in the spiritual domain of care.
    Conclusions: Addressing spiritual concerns is essential to providing child- and family-centred palliative care. Eliciting spiritual concerns may enable health and social care professionals to identify the things that can support and enhance a meaningful life and legacy for children and their families.
    Mesh-Begriff(e) Humans ; Child ; Adolescent ; Child, Preschool ; Cross-Sectional Studies ; Palliative Care ; Hospice Care ; Family ; Qualitative Research
    Sprache Englisch
    Erscheinungsdatum 2023-03-28
    Erscheinungsland England
    Dokumenttyp Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 639247-7
    ISSN 1477-030X ; 0269-2163
    ISSN (online) 1477-030X
    ISSN 0269-2163
    DOI 10.1177/02692163231165101
    Datenquelle MEDical Literature Analysis and Retrieval System OnLINE

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  8. Artikel ; Online: COVID-19: Impact on Pediatric Palliative Care.

    Scott, Hannah May / Coombes, Lucy / Braybrook, Debbie / Roach, Anna / Harðardóttir, Daney / Bristowe, Katherine / Ellis-Smith, Clare / Higginson, Irene / Gao, Wei / Bluebond-Langner, Myra / Farsides, Bobbie / Murtagh, Fliss Em / Fraser, Lorna K / Harding, Richard

    Journal of pain and symptom management

    2022  Band 64, Heft 1, Seite(n) e1–e5

    Abstract: Context: Children and young people with life-limiting or life-threatening conditions and their families are potentially vulnerable during COVID-19 lockdowns due to pre-existing high clinical support needs and social participation limitations.: ... ...

    Abstract Context: Children and young people with life-limiting or life-threatening conditions and their families are potentially vulnerable during COVID-19 lockdowns due to pre-existing high clinical support needs and social participation limitations.
    Objectives: To explore the impact of the COVID-19 pandemic and lockdowns on this population.
    Methods: Sub-analysis of an emergent COVID-19 related theme from a larger semi-structured interview study investigating priority pediatric palliative care outcomes. One hundred and six United Kingdom-wide purposively-sampled Children and young people with life-limiting or life-threatening conditions, parent/carers, siblings, health professionals, and commissioners.
    Results: COVID-19 was raised by participants in 12/44 interviews conducted after the United Kingdom's first confirmed COVID-19 case. Key themes included loss of vital social support, disruption to services important to families, and additional psychological distress.
    Conclusion: Continued delivery of child- and family-centered palliative care requires innovative assessment and delivery of psycho-social support. Disruptions within treatment and care providers may compound support needs, requiring cordination for families facing multiagency delays.
    Mesh-Begriff(e) Adolescent ; COVID-19 ; Child ; Communicable Disease Control ; Family/psychology ; Humans ; Palliative Care/psychology ; Pandemics
    Sprache Englisch
    Erscheinungsdatum 2022-02-26
    Erscheinungsland United States
    Dokumenttyp Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 639142-4
    ISSN 1873-6513 ; 0885-3924
    ISSN (online) 1873-6513
    ISSN 0885-3924
    DOI 10.1016/j.jpainsymman.2022.02.330
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  9. Artikel ; Online: Genetic analysis of disease resilience of wean-to-finish pigs under a natural disease challenge model using reaction norms.

    Cheng, Jian / Lim, KyuSang / Putz, Austin M / Wolc, Anna / Harding, John C S / Dyck, Michael K / Fortin, Frederic / Plastow, Graham S / Dekkers, Jack C M

    Genetics, selection, evolution : GSE

    2022  Band 54, Heft 1, Seite(n) 11

    Abstract: Background: Disease resilience is the ability to maintain performance across environments with different disease challenge loads (CL). A reaction norm describes the phenotypes that a genotype can produce across a range of environments and can be ... ...

    Abstract Background: Disease resilience is the ability to maintain performance across environments with different disease challenge loads (CL). A reaction norm describes the phenotypes that a genotype can produce across a range of environments and can be implemented using random regression models. The objectives of this study were to: (1) develop measures of CL using growth rate and clinical disease data recorded under a natural polymicrobial disease challenge model; and (2) quantify genetic variation in disease resilience using reaction norm models.
    Methods: Different CL were derived from contemporary group effect estimates for average daily gain (ADG) and clinical disease phenotypes, including medical treatment rate (TRT), mortality rate, and subjective health scores. Resulting CL were then used as environmental covariates in reaction norm analyses of ADG and TRT in the challenge nursery and finisher, and compared using model loglikelihoods and estimates of genetic variance associated with CL. Linear and cubic spline reaction norm models were compared based on goodness-of-fit and with multi-variate analyses, for which phenotypes were separated into three traits based on low, medium, or high CL.
    Results: Based on model likelihoods and estimates of genetic variance explained by the reaction norm, the best CL for ADG in the nursery was based on early ADG in the finisher, while the CL derived from clinical disease traits across the nursery and finisher was best for ADG in the finisher and for TRT in the nursery and across the nursery and finisher. With increasing CL, estimates of heritability for nursery and finisher ADG initially decreased, then increased, while estimates for TRT generally increased with CL. Genetic correlations for ADG and TRT were low between high versus low CL, but high for close CL. Linear reaction norm models fitted the data significantly better than the standard genetic model without genetic slopes, while the cubic spline model fitted the data significantly better than the linear reaction norm model for most traits. Reaction norm models also fitted the data better than multi-variate models.
    Conclusions: Reaction norm models identified genotype-by-environment interactions related to disease CL. Results can be used to select more resilient animals across different levels of CL, high-performance animals at a given CL, or a combination of these.
    Mesh-Begriff(e) Animals ; Genotype ; Phenotype ; Swine/genetics ; Weaning
    Sprache Englisch
    Erscheinungsdatum 2022-02-08
    Erscheinungsland France
    Dokumenttyp Journal Article
    ZDB-ID 1005838-2
    ISSN 1297-9686 ; 0754-0264 ; 0999-193X
    ISSN (online) 1297-9686
    ISSN 0754-0264 ; 0999-193X
    DOI 10.1186/s12711-022-00702-0
    Datenquelle MEDical Literature Analysis and Retrieval System OnLINE

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  10. Artikel ; Online: Achieving child-centred care for children and young people with life-limiting and life-threatening conditions-a qualitative interview study.

    Coombes, Lucy / Braybrook, Debbie / Roach, Anna / Scott, Hannah / Harðardóttir, Daney / Bristowe, Katherine / Ellis-Smith, Clare / Bluebond-Langner, Myra / Fraser, Lorna K / Downing, Julia / Farsides, Bobbie / Murtagh, Fliss E M / Harding, Richard

    European journal of pediatrics

    2022  Band 181, Heft 10, Seite(n) 3739–3752

    Abstract: This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, ...

    Abstract This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, other concerns, and care priorities of children and young people with life limiting and life-threatening conditions and their families. Participants were recruited from six hospitals and three children's hospices in the UK. Verbatim transcripts were analysed using framework analysis. A total of 106 participants were recruited: 26 children (5-17 years), 40 parents (of children 0-17 years), 13 siblings (5-17 years), 15 health and social care professionals, 12 commissioners. Participants described many inter-related symptoms, concerns, and care priorities impacting on all aspects of life. Burdensome symptoms included pain and seizures. Participants spoke of the emotional and social impacts of living with life-limiting conditions, such as being able to see friends, and accessing education and psychological support. Spiritual/existential concerns included the meaning of illness and planning for an uncertain future. Data revealed an overarching theme of pursuing 'normality', described as children's desire to undertake usual childhood activities. Parents need support with practical aspects of care to help realise this desire for normality.
    Conclusion: Children with life-limiting conditions and their families experience a wide range of inter-related symptoms, concerns, and care priorities. A holistic, child-centred approach to care is needed, allowing focus on pursuit of normal childhood activities. Improvements in accessibility, co-ordination, and availability of health services are required to achieve this.
    What is known: • Existing evidence regarding symptoms, concerns, and care priorities for children with life-limiting conditions is largely limited to proxy-reported data and those with a cancer diagnosis. • Child-centred care provision must be directed by children's perspectives on their priorities for care.
    What is new: • Social and educational activities are more important to children with life-limiting conditions than their medical concerns. • A holistic approach to care is required that extends beyond addressing medical needs, in order to support children with life-limiting conditions to focus on pursuit of normal childhood activities.
    Mesh-Begriff(e) Adolescent ; Child ; Child Care ; Family/psychology ; Humans ; Parents/psychology ; Qualitative Research ; Social Support
    Sprache Englisch
    Erscheinungsdatum 2022-08-12
    Erscheinungsland Germany
    Dokumenttyp Journal Article
    ZDB-ID 194196-3
    ISSN 1432-1076 ; 0340-6199 ; 0943-9676
    ISSN (online) 1432-1076
    ISSN 0340-6199 ; 0943-9676
    DOI 10.1007/s00431-022-04566-w
    Datenquelle MEDical Literature Analysis and Retrieval System OnLINE

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