1
40
9
-
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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October 2023 List
Text
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October List 2023
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<a href="http://doi.org/10.1186/s12904-023-01238-w" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01238-w</a>
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Title
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Regional perspectives on the coordination and delivery of paediatric end-of-life care in the UK: a qualitative study
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Terminal Care; child; terminal care; article; female; human; male; palliative therapy; clinical article; education; child health care; awareness; qualitative research; funding; human experiment; semi structured interview; thematic analysis; organization; specialization
Creator
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Papworth A; Hackett J; Beresford B; Murtagh F; Weatherly H; Hinde S; Bedendo A; Walker G; Noyes J; Oddie S; Vasudevan C; Feltbower RG; Phillips B; Hain R; Subramanian G; Haynes A; Fraser LK
Description
An account of the resource
Background: Provision of and access to paediatric end-of-life care is inequitable, but previous research on this area has focused on perspectives of health professionals in specific settings or children with specific conditions. This qualitative study aimed to explore regional perspectives of the successes, and challenges to the equitable coordination and delivery of end-of-life care for children in the UK. The study provides an overarching perspective on the challenges of delivering and coordinating end-of-life care for children in the UK, and the impact of these on health professionals and organisations. Previous research has not highlighted the successes in the sector, such as the formal and informal coordination of care between different services and sectors. Method(s): Semi-structured interviews with Chairs of the regional Palliative Care Networks across the UK. Chairs or co-Chairs (n = 19) of 15/16 Networks were interviewed between October-December 2021. Data were analysed using thematic analysis. Result(s): Three main themes were identified: one standalone theme ("Communication during end-of-life care"); and two overarching themes ("Getting end-of-life services and staff in the right place", with two themes: "Access to, and staffing of end-of-life care" and "Inconsistent and insufficient funding for end-of-life care services"; and "Linking up healthcare provision", with three sub-themes: "Coordination successes", "Role of the networks", and "Coordination challenges"). Good end-of-life care was facilitated through collaborative and network approaches to service provision, and effective communication with families. The implementation of 24/7 advice lines and the formalisation of joint-working arrangements were highlighted as a way to address the current challenges in the specialism. Conclusion(s): Findings demonstrate how informal and formal relationships between organisations and individuals, enabled early communication with families, and collaborative working with specialist services. Formalising these could increase knowledge and awareness of end of life care, improve staff confidence, and overall improve professionals' experiences of delivering care, and families' experiences of receiving it. There are considerable positives that come from collaborative working between different organisations and sectors, and care could be improved if these approaches are funded and formalised. There needs to be consistent funding for paediatric palliative care and there is a clear need for education and training to improve staff knowledge and confidence.Copyright © 2023, BioMed Central Ltd., part of Springer Nature.
Identifier
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<a href="http://doi.org/10.1186/s12904-023-01238-w" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01238-w</a>
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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).
2023
Article
Awareness
Bedendo A
Beresford B
BMC Palliative Care
Child
Child Health Care
Clinical Article
Education
Feltbower RG
Female
Fraser LK
Funding
Hackett J
Hain R
Haynes A
Hinde S
Human
Human Experiment
Male
Murtagh F
Noyes J
October List 2040
Oddie S
Organization
Palliative Therapy
Papworth A
Phillips B
Qualitative Research
Semi Structured Interview
Specialization
Subramanian G
Terminal Care
Thematic Analysis
Vasudevan C
Walker G
Weatherly H
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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October 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October List 2023
URL Address
<a href="https://bmcpediatr.biomedcentral.com/articles/10.1186/s12887-023-04151-6"> http://doi.org/10.1186/s12887-023-04151-6</a>
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Title
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Hospital healthcare experiences of children and young people with life-threatening or life-shortening conditions, and their parents: scoping reviews and resultant conceptual frameworks.
Publisher
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BMC Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Child; Only Child
Creator
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Mukherjee S; Richardson N; Beresford B
Description
An account of the resource
Background: Patient experience is a core component of healthcare quality. Patient-reported experience measures (PREMs) are increasingly used to assess this, but there are few paediatric PREMs. This paper reports the first stage of developing two such measures, one for children and young people (0-18 years) (CYP) with a life-threatening or life-shortening condition (LT/LSC), and one for their parents. It comprised parallel scoping reviews of qualitative evidence on the elements of health service delivery and care that matter to, or impact on, CYP (Review 1) and parents (Review 2). Methods: Medline and PsychINFO (1/1/2010 - 11/8/2020) and CINAHL Complete (1/1/2010 - 4/7/2020) were searched and records identified screened against inclusion criteria. A thematic approach was used to manage and analyse relevant data, informed by existing understandings of patient/family experiences as comprising aspects of staff's attributes, their actions and behaviours, and organisational features. The objective was to identity the data discrete elements of health service delivery and care which matter to, or impact on, CYP or parents which, when organised under higher order conceptual domains, created separate conceptual frameworks. Results: 18,531 records were identified. Sparsity of data on community-based services meant the reviews focused only on hospital-based (inpatient and outpatient) experiences. 53 studies were included in Review 1 and 64 in Review 2. For Review 1 (CYP), 36 discrete elements of healthcare experience were identified and organized under 8 higher order domains (e.g. staff's empathetic qualities; information-sharing/decision making; resources for socializing/play). In Review 2 (parents), 55 elements were identified and organized under 9 higher order domains. Some domains were similar to those identified in Review 1 (e.g. professionalism; information-sharing/decision-making), others were unique (e.g. supporting parenting; access to additional support). Conclusions: Multiple and wide-ranging aspects of the way hospital healthcare is organized and delivered matters to and impacts on CYP with LT/LSCs, and their parents. The aspects that matter differ between CYP and parents, highlighting the importance of measuring and understanding CYP and parent experience seperately. These findings are key to the development of patient/parent experience measures for this patient population and the resultant conceptual frameworks have potential application in service development.
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<a href="https://bmcpediatr.biomedcentral.com/articles/10.1186/s12887-023-04151-6">10.1186/s12887-023-04151-6</a>
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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).
2023
Beresford B
Bmc Pediatrics
Child
Mukherjee S
October List 2026
Only Child
Richardson N
-
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Title
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June 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2022 List
URL Address
<a href="https://spcare.bmj.com/content/early/2023/04/24/spcare-2022-004012">https://spcare.bmj.com/content/early/2023/04/24/spcare-2022-004012</a>
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Psychological well-being of hospice staff: systematic review
Publisher
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BMJ Supportive and Palliative Care
Date
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2023
Subject
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Hospices; Supportive care; Psychological care; Education and training; Hospice care
Creator
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Papworth A; Ziegler L; Beresford B; Mukherjee S; Fraser L; Fisher V; O'Neill M; Golder S; Bedendo A; Taylor J
Description
An account of the resource
BACKGROUND: Poor psychological well-being among healthcare staff has implications for staff sickness and absence rates, and impacts on the quality, cost and safety of patient care. Although numerous studies have explored the well-being of hospice staff, study findings vary and the evidence has not yet been reviewed and synthesised. Using job demands-resources (JD-R) theory, this review aimed to investigate what factors are associated with the well-being of hospice staff. METHODS: We searched MEDLINE, CINAHL and PsycINFO for peer-reviewed quantitative, qualitative or mixed-methods studies focused on understanding what contributes to the well-being of hospice staff who provide care to patients (adults and children). The date of the last search was 11 March 2022. Studies were published from 2000 onwards in the English language and conducted in Organisation for Economic Co-operation and Development countries. Study quality was assessed using the Mixed Methods Appraisal Tool. Data synthesis was conducted using a result-based convergent design, which involved an iterative, thematic approach of collating data into distinct factors and mapping these to the JD-R theory. RESULTS: A total of 4016 unique records were screened by title and abstract, 115 full-text articles were retrieved and reviewed and 27 articles describing 23 studies were included in the review. The majority of the evidence came from studies of staff working with adult patients. Twenty-seven individual factors were identified in the included studies. There is a strong and moderate evidence that 21 of the 27 identified factors can influence hospice staff well-being. These 21 factors can be grouped into three categories: (1) those that are specific to the hospice environment and role, such as the complexity and diversity of the hospice role; (2) those that have been found to be associated with well-being in other similar settings, such as relationships with patients and their families; and (3) those that affect workers regardless of their role and work environment, that is, that are not unique to working in a healthcare role, such as workload and working relationships. There was strong evidence that neither staff demographic characteristics nor education level can influence well-being. DISCUSSION: The factors identified in this review highlight the importance of assessing both positive and negative domains of experience to determine coping interventions. Hospice organisations should aim to offer a wide range of interventions to ensure their staff have access to something that works for them. These should involve continuing or commencing initiatives to protect the factors that make hospices good environments in which to work, as well as recognising that hospice staff are also subject to many of the same factors that affect psychological well-being in all work environments. Only two studies included in the review were set in children's hospices, suggesting that more research is needed in these settings. PROSPERO REGISTRATION NUMBER: CRD42019136721 (Deviations from the protocol are noted in Table 8, Supplementary material).
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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).
Identifier
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<a href="https://spcare.bmj.com/content/early/2023/04/24/spcare-2022-004012">10.1136/spcare-2022-004012</a>
2023
Bedendo A
Beresford B
BMJ Supportive and Palliative Care
Education And Training
Fisher V
Fraser L
Golder S
Hospice Care
Hospices
June 2022 List
Mukherjee S
O'Neill M
Papworth A
Psychological care
Supportive Care
Taylor J
Ziegler L
-
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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January 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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January List 2023
URL Address
<a href="http://doi.org/10.1038/s41390-022-02370-8" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1038/s41390-022-02370-8</a>
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Title
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Incidence of anxiety and depression in children and young people with life-limiting conditions
Publisher
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Pediatric Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Anxiety; Child; Depression; Young People
Creator
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Barker MM; Beresford B; Fraser LK
Description
An account of the resource
BACKGROUND: The aim of this study was to investigate the incidence of anxiety and depression in children and young people with life-limiting conditions. METHODS: A comparative cohort study was conducted, using primary and secondary care data from the Clinical Practice Research Datalink (CPRD) in England. Anxiety and depression codes were identified using diagnostic, symptom and prescription codes. Incidence rates of anxiety and depression were compared across condition groups using Poisson regression, adjusting for sex, age, ethnicity, and deprivation status. RESULTS: A total of 25,313 children and young people were included in the study: 5527 with life-limiting conditions, 6729 with chronic conditions, and 13,057 with no long-term conditions. The incidence of anxiety (IRR(adj): 1.39, 95% CI: 1.09-1.77) and depression (IRR(adj): 1.41, 95% CI: 1.08-1.83) was significantly higher in children and young people with life-limiting conditions, compared to children and young people with no long-term conditions. CONCLUSIONS: The higher incidence of anxiety and depression observed among children and young people with life-limiting conditions highlights the need for psychological support in this population, including further efforts to prevent, identify, and treat anxiety and depression. IMPACT: The analysis of primary and secondary healthcare data from England revealed that the incidence of anxiety and depression was higher among children and young people with life-limiting conditions, compared to those with no long-term conditions. This is the first study to investigate the incidence of anxiety and depression in children and young people with a wide range of life-limiting conditions. The higher incidence of anxiety and depression observed in children and young people with life-limiting conditions highlights the need for psychological support aiming to prevent, identify, and treat anxiety and depression in this population group.
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<a href="http://doi.org/10.1038/s41390-022-02370-8" target="_blank" rel="noreferrer noopener">10.1038/s41390-022-02370-8</a>
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Child
2022
anxiety
Barker MM
Beresford B
Depression
Fraser LK
January List 2023
Pediatric Research
Young People
-
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Title
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March 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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March 2022 List
URL Address
<a href="http://doi.org/10.1177/02692163211059345" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/02692163211059345</a>
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Title
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It was like an airbag, it cushioned the blow': A multi-site qualitative study of bereaved parents' experiences of using cooling facilities
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Bereavement; grief; qualitative; paediatric palliative care; cold cot; cooling blanket; cooling facilities; cold bedrooms
Creator
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Hackett J; Heavey E; Beresford B
Description
An account of the resource
BACKGROUND: Evidence on the benefits to parents of spending time with their child in the hours after their death means this is now routine practice. UK children's hospices offer parents the opportunity to extend this period by using cooling facilities (i.e. cooled 'bedrooms'; cooling blankets/mattresses) to slow deterioration. AIM: To explore parents' experiences of using cooling facilities and beliefs about how it shaped experiences of the very early days of bereavement, and on-going grieving processes. METHODS: Multi-site study involving in-depth interviews with parents bereaved in the previous 3 years. Grief theories informed data analysis, which employed narrative and thematic approaches. Eight hospices supported recruitment. RESULTS: Twenty-two mothers and eight fathers were recruited, representing 25% of families approached. Duration of use of a cooling facility varied, as did the amount of time spent with the child. All parents treasured this period, valuing the way it eased separation from their child and gave some control over when this happened. They believed all bereaved parents should have the opportunity to use a cooling facility. Using a cooling facility supported parents' engagement with grief tasks including acceptance of loss, processing emotional pain and facing changes to their lives brought about by their child's death. Memories and mementoes created during this period served to support on-going connections with the child. Parents who used a cooling facility at a hospice reported benefits of the setting itself. CONCLUSIONS: As well as easing the very early days of loss, use of cooling facilities may influence longer-term bereavement outcomes.
Identifier
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<a href="http://doi.org/10.1177/02692163211059345" target="_blank" rel="noreferrer noopener">10.1177/02692163211059345</a>
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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).
2022
Bereavement
Beresford B
Cold bedrooms
Cold cot
cooling blanket
cooling facilities
Grief
Hackett J
Heavey E
March 2022 List
paediatric palliative care
Palliative Medicine
Qualitative
-
Dublin Core
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Title
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March 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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March 2021 List
URL Address
<a href="http://doi.org/10.1177/0269216320984335" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216320984335</a>
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Title
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Cold bedrooms' and other cooling facilities in UK children's hospices, how they are used and why they are offered: A mixed methods study
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
grief; paediatric palliative care; bereavement; Cold bedrooms; cold cot; cooling blanket; cooling facilities
Creator
An entity primarily responsible for making the resource
Hackett J; Beresford B
Description
An account of the resource
BACKGROUND: The death of a child is acutely distressing. Evidence on the benefits and value to parents of spending time with their dead child have now been integrated into routine practice and is regarded as a bereavement support intervention. UK children's hospices have a tradition of using 'cooling facilities' (cold bedrooms, cooled blanket/mattress) to extend this period of time by slowing deterioration of the body. AIMS: To describe: (1) type and use of cooling facilities in UK children's hospices, policies and practices regarding their use, and any changes over time. (2) Director of care's views on the purpose of cooling facilities and the rationale for hospice-specific practices. METHODS: An explanatory mixed-methods design consisting two phases: a crosssectional survey of directors of care of UK children's hospices (n = 52) followed by semi-structured telephone interviews with a sub-sample of respondents. Survey data were analysed using descriptive statistics and interview data using directed content analysis. RESULTS: 41/52 hospices completed the survey and 13 directors of care were interviewed. All hospices had cooling facilities. Some offered use of portable cooling facilities at home, though take-up appears low. Hospices differed in approaches to managing care and duration of use. Views on whether parents should observe deterioration informed the latter. Directors of care believed they provide families with time to say 'goodbye' and process their loss. Challenges for staff were reported.
Identifier
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<a href="http://doi.org/10.1177/0269216320984335" target="_blank" rel="noreferrer noopener">10.1177/0269216320984335</a>
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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).
2021
Bereavement
Beresford B
Cold bedrooms
Cold cot
cooling blanket
cooling facilities
Grief
Hackett J
March 2021 List
paediatric palliative care
Palliative Medicine
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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February 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February 2019 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2018-hospiceabs.100" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1136/bmjspcare-2018-hospiceabs.100</a>
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Title
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P-75?�cold bedrooms, cooling blankets, and cuddle cots� provided by children�s hospices: mapping practice
Publisher
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BMJ Supportive & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
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Hackett J; Beresford B; Fraser L
Description
An account of the resource
Background The ways parents are supported at the end of their child�s life and after death can profoundly affect the grieving process. Within children�s hospices cold bedrooms, cooling blankets and cuddle cots are provided to enable families to be close and have unrestricted access to their child after death. Such facilities are thought to support parents in the initial stages of grief. However, there is wide variation in practice and almost no evidence to inform parents� decision-making during advance care planning.Aim We aim to map current practice and explore parents� experiences of using cold bedrooms and/or cooling blankets and/or cuddle cots � either in the hospice or at home � and the perceived impact of this on immediate and long term bereavement.Methods This study comprises two stages. First, a cross-sectional survey to gather data on previous and current practice, and reasons for inclusion of these facilities within the portfolio of care and support, collected via structured telephone interviews with heads of care in all UK children�s hospices (n=52). Second, qualitative interviews with parents (n=30) exploring stories of the early days of bereavement and the support received from the hospice, their needs and desires in those early days and the perceived role of these facilities on early and subsequent experiences of bereavement. Survey data will be analysed using descriptive statistics and content analysis. Interviews will be analysed using narrative and thematic approaches.Results We will not have data to report but hope presenting this work will alert others to this research and generate connections and meaningful conversations with others with an interest in this area.Conclusions Findings will have implications for practice within children�s hospices and also for statutory services which are beginning to offer this provision.
Identifier
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<a href="http://doi.org/10.1136/bmjspcare-2018-hospiceabs.100" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-hospiceabs.100</a>
2018
Beresford B
BMJ Supportive & Palliative Care
February 2019 List
Fraser L
Hackett J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.7861/clinmedicine.14-4-404" target="_blank" rel="noreferrer">http://doi.org/10.7861/clinmedicine.14-4-404</a>
Dublin Core
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Title
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Young adults as users of adult healthcare: experiences of young adults with complex or life-limiting conditions
Publisher
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Clinical Medicine (london, England)
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
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Female; Humans; Male; Young Adult; Great Britain; Adult; Parents; Attitude of Health Personnel; Inpatients; Health Services; Minority Groups
Creator
An entity primarily responsible for making the resource
Beresford B; Stuttard L
Description
An account of the resource
Awareness is growing that young adults may have distinctive experiences of adult healthcare and that their needs may differ from those of other adult users. In addition, the role of adult health teams in supporting positive transitions from paediatrics is increasingly under discussion. This paper contributes to these debates. It reports a qualitative study of the experiences of young adults - all with complex chronic health conditions - as users of adult health services. Key findings from the study are reported, including an exploration of factors that help to explain interviewees' experiences. Study findings are discussed in the context of existing evidence from young adults in adult healthcare settings and theories of 'young adulthood'. Implications for training and practice are considered, and priorities for future research are identified.
2014-08
Identifier
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<a href="http://doi.org/10.7861/clinmedicine.14-4-404" target="_blank" rel="noreferrer">10.7861/clinmedicine.14-4-404</a>
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Type
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Journal Article
2014
Adult
Attitude Of Health Personnel
Backlog
Beresford B
Clinical Medicine (london, England)
Female
Great Britain
Health Services
Humans
Inpatients
Journal Article
Male
Minority Groups
Parents
Stuttard L
Young Adult
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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Backlog
URL Address
<a href="http://doi.org/10.1111/j.1365-2524.2005.00578.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1365-2524.2005.00578.x</a>
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Title
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Desired outcomes for children and young people with complex health care needs, and children who do not use speech for communication
Publisher
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Health & Social Care in the Community
Date
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2005
Subject
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Communication Barriers; Preschool; Non-U.S. Gov't; PedPal Lit; Adolescent Child Child; Disabled Persons Female Great Britain; Health Services Needs and Demand Humans Infant Infant; Newborn Interviews Male; Outcome Assessment (Health Care) Research Support
Creator
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Rabiee P; Sloper P; Beresford B
Identifier
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<a href="http://doi.org/10.1111/j.1365-2524.2005.00578.x" target="_blank" rel="noreferrer">10.1111/j.1365-2524.2005.00578.x</a>
Rights
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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).
Type
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Journal Article
Description
An account of the resource
2005
2005
Adolescent Child Child
Backlog
Beresford B
Communication Barriers
Disabled Persons Female Great Britain
Health & Social Care in the Community
Health Services Needs and Demand Humans Infant Infant
Journal Article
Newborn Interviews Male
Non-U.S. Gov't
Outcome Assessment (Health Care) Research Support
PedPal Lit
Preschool
Rabiee P
Sloper P