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  1. Article ; Online: Paediatric palliative care research

    Wolfe, Joanne / Bluebond-Langner, Myra

    Palliative medicine

    2020  Volume 34, Issue 3, Page(s) 259–261

    MeSH term(s) Humans ; Palliative Care ; Palliative Medicine ; Pediatrics
    Language English
    Publishing date 2020-03-10
    Publishing country England
    Document type Editorial ; Introductory Journal Article
    ZDB-ID 639247-7
    ISSN 1477-030X ; 0269-2163
    ISSN (online) 1477-030X
    ISSN 0269-2163
    DOI 10.1177/0269216320905029
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  2. Book: Psychosocial aspects of cystic fibrosis

    Bluebond-Langner, Myra

    2001  

    Author's details ed. by Myra Bluebond-Langner
    Keywords Mukoviszidose ; Psychosoziale Medizin
    Subject Cystische Fibrose ; Zystische Fibrose ; Mucoviscidose ; Zystische Pankreasfibrose
    Language English
    Size XVI, 482 S. : Ill., graph. Darst.
    Publisher Arnold
    Publishing place London u.a.
    Publishing country Great Britain
    Document type Book
    HBZ-ID HT012928180
    ISBN 0-340-75891-0 ; 978-0-340-75891-5
    Database Catalogue ZB MED Medicine, Health

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    2001 A 815 order for loan Magazin

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  3. Article ; Online: British Congenital Cardiac Association Fetal Cardiology Standards: impact of Patient and Public involvement exercise on the development of clinical standards.

    Bluebond-Langner, Myra / Wakeling, Sara / Vincent, Katherine / Butler, Ashleigh / Brown, Kate / Jowett, Victoria

    Cardiology in the young

    2023  , Page(s) 1–5

    Abstract: Objective: To examine the impact of a Patient and Public Involvement exercise on the development of British Congenital Cardiac Association Fetal Cardiology Standards 2021.: Design: Open-ended, semi-structured interviews were undertaken to inform the ... ...

    Abstract Objective: To examine the impact of a Patient and Public Involvement exercise on the development of British Congenital Cardiac Association Fetal Cardiology Standards 2021.
    Design: Open-ended, semi-structured interviews were undertaken to inform the design of a study to improve the quality of parents' experiences during antenatal and perinatal care of their child with CHD. This Patient and Public Involvement exercise was used to inform the final version of the drafted 'Standards'.
    Setting: One-on-one interviews with parents who responded to a request on the closed Facebook page of the user group "Little Hearts Matter": "Would you be interested in helping us to design a study about parents' experience on learning that their child had CHD"?
    Patients: Parents of children with single ventricle CHD.
    Results: Twenty-one parents (18 mothers, 3 fathers) participated. Parents responses were reported to have variably reinforced, augmented, and added specificity in the later stages of drafting to six of the seven subsections of Section C Information and Support for Parents including: "At the time of the Scan"; "Counselling following the identification of an abnormality"; "Written information/resources"; "Parent support"; "Communication with other teams and ongoing care"; and "Bereavement support".
    Conclusions: This Patient and Public Involvement exercise successfully informed the development of Standards after the initial drafting. It contributed to the establishment of face validity of the 'Standards', especially when consistent with what is reported in the literature. Further research is needed to explore approaches to involving and standardising Patient and Public Involvement in the development of clinical standards.
    Language English
    Publishing date 2023-12-22
    Publishing country England
    Document type Journal Article
    ZDB-ID 1078466-4
    ISSN 1467-1107 ; 1047-9511
    ISSN (online) 1467-1107
    ISSN 1047-9511
    DOI 10.1017/S1047951123004298
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article ; Online: The NeoPACE study: study protocol for the development of a core outcome set for neonatal palliative care.

    Gallagher, Katie / Chant, Kathy / Mancini, Alex / Bluebond-Langner, Myra / Marlow, Neil

    BMC palliative care

    2023  Volume 22, Issue 1, Page(s) 203

    Abstract: Background: Neonatal death is the leading category of death in children under the age of 5 in the UK. Many babies die following decisions between parents and the neonatal team; when a baby is critically unwell, with the support of healthcare ... ...

    Abstract Background: Neonatal death is the leading category of death in children under the age of 5 in the UK. Many babies die following decisions between parents and the neonatal team; when a baby is critically unwell, with the support of healthcare professionals, parents may make the decision to stop active treatment and focus on ensuring their baby has a 'good' death. There is very little evidence to support the clinical application of neonatal palliative care and/or end-of-life care, resulting in variation in clinical provision between neonatal units. Developing core outcomes for neonatal palliative care would enable the development of measures of good practice and enhance our care of families. The aim of this study is to develop a core outcome set with associated tools for measuring neonatal palliative care.
    Method: This study has four phases: (1) identification of potential outcomes through systematic review and qualitative interviews with key stakeholders, including parents and healthcare professionals (2) an online Delphi process with key stakeholders to determine core outcomes (3) identification of outcome measures to support clinical application of outcome use (4) dissemination of the core outcome set for use across neonatal units in the UK. Key stakeholders include parents, healthcare professionals, and researchers with a background in neonatal palliative care.
    Discussion: Developing a core outcome set will standardise minimum reported outcomes for future research and quality improvement projects designed to determine the effectiveness of interventions and clinical care during neonatal palliative and/or end-of-life care. The core outcome set will provide healthcare professionals working in neonatal palliative and/or end-of-life support with an increased and consistent evidence base to enhance practice in this area.
    Trial registration: The study has been registered with the COMET initiative ( https://www.comet-initiative.org/Studies/Details/1470 ) and the systematic review is registered with the International Prospective Register of Systematic Reviews (PROSPERO) (CRD42023451068).
    MeSH term(s) Child ; Humans ; Infant, Newborn ; Delphi Technique ; Outcome Assessment, Health Care/methods ; Palliative Care ; Research Design ; Treatment Outcome
    Language English
    Publishing date 2023-12-19
    Publishing country England
    Document type Journal Article ; Systematic Review
    ZDB-ID 2091556-1
    ISSN 1472-684X ; 1472-684X
    ISSN (online) 1472-684X
    ISSN 1472-684X
    DOI 10.1186/s12904-023-01326-x
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  5. Article ; Online: Commentary: Treating the Pediatric Cancer Patient: Insights That Have Stood the Test of Time.

    Wiener, Lori / Bluebond-Langner, Myra

    Journal of pediatric psychology

    2019  Volume 44, Issue 7, Page(s) 764–767

    Language English
    Publishing date 2019-04-29
    Publishing country United States
    Document type Journal Article
    ZDB-ID 625329-5
    ISSN 1465-735X ; 0146-8693
    ISSN (online) 1465-735X
    ISSN 0146-8693
    DOI 10.1093/jpepsy/jsz022
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  6. Article ; Online: Advances and Challenges in European Paediatric Palliative Care.

    Fraser, Lorna K / Bluebond-Langner, Myra / Ling, Julie

    Medical sciences (Basel, Switzerland)

    2020  Volume 8, Issue 2

    Abstract: Advances in both public health and medical interventions have resulted in a reduction in childhood mortality worldwide over the last few decades; however, children still have life-threatening conditions that require palliative care. Children's palliative ...

    Abstract Advances in both public health and medical interventions have resulted in a reduction in childhood mortality worldwide over the last few decades; however, children still have life-threatening conditions that require palliative care. Children's palliative care is a specialty that differs from palliative care for adults in many ways. This paper discusses some of the challenges, and some of the recent advances in paediatric palliative care. Developing responsive services requires good epidemiological data, as well as a clarity on services currently available and a robust definition of the group of children who would benefit from palliative care. Once a child is diagnosed with a life-limiting condition or life-limiting illness, parents face a number of complex and difficult decisions; not only about care and treatment, but also about the place of care and ultimately, place of death. The best way to address the needs of children requiring palliative care and their families is complex and requires further research and the routine collection of high-quality data. Although research in children's palliative care has dramatically increased, there is still a dearth of evidence on key components of palliative care notably decision making, communication and pain and symptom management specifically as it relates to children. This evidence is required in order to ensure that the care that these children and their families require is delivered.
    Language English
    Publishing date 2020-04-17
    Publishing country Switzerland
    Document type Journal Article
    ZDB-ID 2754473-4
    ISSN 2076-3271 ; 2076-3271
    ISSN (online) 2076-3271
    ISSN 2076-3271
    DOI 10.3390/medsci8020020
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  7. Article: Advancing the science of outcome measurement in paediatric palliative care.

    Harding, Richard / Chambers, Lizzie / Bluebond-Langner, Myra

    International journal of palliative nursing

    2019  Volume 25, Issue 2, Page(s) 72–79

    Abstract: Background:: There is a lack of appropriate, validated person-centred outcome measures (PCOM) for paediatric palliative care in the scientific literature, and as a result there is not a tool to drive and evaluate care of children and young people.: ... ...

    Abstract Background:: There is a lack of appropriate, validated person-centred outcome measures (PCOM) for paediatric palliative care in the scientific literature, and as a result there is not a tool to drive and evaluate care of children and young people.
    Methods:: In line with COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidance, an expert group was convened to elicit views on the domains/items to include in a PCOM, implementation challenges and requirements for use in routine care by practitioners. Data were content analysed.
    Results:: 36 UK-wide clinicians, advocates, and researchers participated. 1) Items included were: specific symptoms, education, play and social interaction, parental time for partner and other children, sex and intimacy, and sibling wellbeing. 2) Implementation challenges: supporting children and young people to engage meaningfully, that the instrument could be seen as a 'test' of parents' care quality, raising unrealistic expectations, proxy validity. 3) There is a need for clear administration and interpretation guidance and for data ownership/access to be agreed.
    Conclusions:: This expert meeting addressed the initial step in COSMIN guidance, informing face validity and acceptability. It provides the information necessary for the first phase of tool development and informs potential use and implementation.
    MeSH term(s) Child ; Hospice and Palliative Care Nursing ; Humans ; Outcome Assessment (Health Care) ; Pediatric Nursing ; Reproducibility of Results ; State Medicine ; United Kingdom
    Language English
    Publishing date 2019-02-20
    Publishing country England
    Document type Consensus Development Conference ; Journal Article
    ZDB-ID 2115109-X
    ISSN 1357-6321
    ISSN 1357-6321
    DOI 10.12968/ijpn.2019.25.2.72
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  8. Article ; Online: Insights into the perception that research ethics committees are a barrier to research with seriously ill children: A study of committee minutes and correspondence with researchers studying seriously ill children.

    Butler, Ashleigh E / Vincent, Katherine / Bluebond-Langner, Myra

    Palliative medicine

    2019  Volume 34, Issue 3, Page(s) 413–423

    Abstract: Background: Research ethics committees are commonly perceived as a 'barrier' to research involving seriously ill children. Researchers studying seriously ill children often feel that committees view their applications more harshly compared to ... ...

    Abstract Background: Research ethics committees are commonly perceived as a 'barrier' to research involving seriously ill children. Researchers studying seriously ill children often feel that committees view their applications more harshly compared to applications for research with other populations. Whether or not this is the case in practice is unknown.
    Aim: The aim of this study was to explore committees' concerns, expectations and decisions for research applications involving seriously ill children submitted for review in the United Kingdom.
    Design: Content analysis of committee meeting minutes, decision letters and researcher response letters.
    Setting/participants: Chief investigators for National Institute of Health Research portfolio studies involving seriously ill children were contacted for permission to review their study documents.
    Results: Of the 77 applications included in this study, 57 received requests for revisions at first review. Committee expectations and concerns commonly related to participant information sheets, methodology, consent, recruitment or formatting. Changes were made to 53 of these studies, all of which were subsequently approved.
    Conclusion: Our findings suggest that committees review applications for research involving seriously ill children with the same scrutiny as applications for research with other populations. Yet, the perception that committees act as a barrier to this type of research persists. We suggest that this perception remains due to other factors including, but not limited to, the high levels of formatting or administrative revisions requested by committees or additional study requirements needed for research involving children, such as multiple versions of consent forms or participant information sheets.
    MeSH term(s) Adolescent ; Child ; Child, Preschool ; Ethics Committees, Research ; Female ; Human Experimentation/ethics ; Humans ; Infant ; Infant, Newborn ; Male ; Research Design ; Terminally Ill ; United Kingdom
    Language English
    Publishing date 2019-11-04
    Publishing country England
    Document type 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 10.1177/0269216319885566
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  9. Article ; Online: 'My life is a mess but I cope': An analysis of the language children and young people use to describe their own life-limiting or life-threatening condition.

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

    Palliative medicine

    2024  Volume 38, Issue 3, Page(s) 379–388

    Abstract: Background: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to ...

    Abstract Background: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each individual child.
    Aim: To explore the language children and young people use to describe their own condition, to inform strategies for discussing needs and priorities.
    Design: Positioned within a
    Setting/participants: A total of 26 children and young people aged 5-17 years with life-limiting or life-threatening conditions (6 cancer; 20 non-cancer) were recruited from nine clinical services (six hospitals and three hospices) across two UK nations.
    Results: The language children and young people use positions them as 'experts in their condition'. They combine medical terminology with their preferred terms for their body to describe symptoms and treatments, and use comparatives and superlatives to communicate their health status. Their language depicts their condition as a 'series of (functional and social) losses', which single them out from their peers as 'the sick one'. Older children and young people also incorporate figurative language to expand their descriptions.
    Conclusion/discussion: Children and young people can provide rich descriptions of their condition. Paying attention to their lexical choices, and converging one's language towards theirs, may enable more child-centred discussions. Expanding discussions about 'what matters most' with consideration of the losses and differences they have experienced may facilitate a fuller assessment of their concerns, preferences and priorities.
    MeSH term(s) Humans ; Child ; Adolescent ; Qualitative Research ; Palliative Care/psychology ; Hospice Care ; Language ; Communication
    Language English
    Publishing date 2024-03-04
    Publishing country England
    Document type Journal Article
    ZDB-ID 639247-7
    ISSN 1477-030X ; 0269-2163
    ISSN (online) 1477-030X
    ISSN 0269-2163
    DOI 10.1177/02692163241233977
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  10. Article ; 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  Volume 38, Issue 4, Page(s) 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 term(s) Adult ; Child ; Humans ; Adolescent ; Cross-Sectional Studies ; Palliative Care ; Qualitative Research ; Caregivers ; Outcome Assessment, Health Care
    Language English
    Publishing date 2024-03-13
    Publishing country England
    Document type Journal Article
    ZDB-ID 639247-7
    ISSN 1477-030X ; 0269-2163
    ISSN (online) 1477-030X
    ISSN 0269-2163
    DOI 10.1177/02692163241234797
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