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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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April 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
April 2019 List
URL Address
<a href="http://doi.org/10.1111/cch.12652" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1111/cch.12652</a>
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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The usefulness and acceptability of a personal health record to children and young people living with a complex health condition: a realist review of the literature
Publisher
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Child: care, health and development
Date
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2019
Subject
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implementation; communication; children and young people; evaluation; context; Personal-health record; realist review
Creator
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Diffin J; Byrne B; Kerr H; Price J; Abbott A; McLaughlin D; O'Halloran P
Description
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BACKGROUND: There are a growing number of children and young people (CYP) with chronic health needs or complex disabilities. Increasingly CYP with life-limiting or life-threatening conditions are surviving into adulthood. Communication between CYP, their family and health professionals can be challenging. The use of a personal-health record (PHR) is one potential strategy for improving communication by promoting CYP's health advocacy skills. However, PHR implementation has proved difficult due to technical, organisational and professional barriers. The aim of this realist review is to identify the factors which help or hinder the use of PHRs with CYP living with a complex health condition. METHODS: Systematic realist review. Literature was sourced from six databases: Medline, Embase, CINAHL, PsychInfo, The Cochrane Library and Science Direct (from 1946 to August Week 3 2018). The web was searched to identify grey literature. Articles were sourced from reference lists of included studies. Data were extracted using a standardised data extraction form. Two reviewers completed data extraction and synthesis. Methodological rigor was assessed using the relevant Critical Appraisal Skills Programme (CASP) tool. RESULTS: Nine articles were included. Contextual factors which helped implementation included the CYP having a high perception of need for a PHR, and a high level of desire for self-management. Service providers and CYP need knowledge about the purpose and benefits of the PHR, and organisations need a dedicated person to facilitate PHR use. Mechanisms triggered by the PHR included improved understanding and knowledge of healthcare condition(s) for CYP, an increased feeling of control over condition(s), and more active engagement in their healthcare. Outcomes for CYP included improved self-advocacy and communication. CONCLUSION: Clearer definitions of which young people would benefit from using a PHR must be established to inform which organisations and service providers would be best suited to PHR implementation.
Identifier
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<a href="http://doi.org/10.1111/cch.12652" target="_blank" rel="noreferrer noopener">10.1111/cch.12652</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).
2019
Abbott A
April 2019 List
Byrne B
Child: Care
Child: Care, Health and Development
children and young people
Communication
CONTEXT
Diffin J
Evaluation
Health and Development
Implementation
Kerr H
McLaughlin D
O'Halloran P
Personal-health record
Price J
realist review
-
Dublin Core
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Title
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2023 Special Edition 1 - Parent Perspectives List
Text
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Citation List Month
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1177/2374373520938909" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/2374373520938909</a>
Dublin Core
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Title
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Patient Experience Research in Children and Young People's Mental Health Services in England: A Route to Genuine Service Transformation or Just Pretty Pictures and Tasteful Color Schemes?
Publisher
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Journal of Patient Experience
Date
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2020
Creator
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Crosier A; Knightsmith P
Description
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The personalization of service provision and responding to patients' expressed needs are key components of government plans to improve children and young people's mental health services in England. This qualitative study explored the use of patient experience research in these services. Despite national level commitments to listening to and acting on the "patient's voice," both service users (young people) and parents of this group reported never having been invited to participate in patient experience research. Most professional respondents reported that such research was frequently tokenistic and conducted solely to meet an administrative requirement. Senior policy makers justified the limited investment in, and use made of patient experience research, by pointing to what they felt were more urgent priorities facing children and young people's mental health services. These included unprecedented levels of demand and critical underfunding of mental health services and related youth- and community-based services. The conceptualization of patient experience research within the National Health Service (NHS) as a service improvement issue was found to have led to its status being diminished to one concerned with relatively cosmetic matters, such as the color scheme or choice of pictures on the walls of clinics. Senior policy makers argued that it was important to rethink the role and value of patient experience research, and to recognize its unique contribution to addressing the existential questions facing services.
Identifier
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<a href="http://doi.org/10.1177/2374373520938909" target="_blank" rel="noreferrer noopener">10.1177/2374373520938909</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).
2020
2023 SE1 - Parent Perspectives
children and young people
Crosier A
Journal of Patient Experience
Knightsmith P
Mental Health
patient feedback
patient perspectives/narratives
Patient Safety
Patient Satisfaction
Qualitative Methods
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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
September 2016 List
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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Keeping All Options Open: Parents' Approaches To Advance Care Planning
Publisher
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Health Expectations
Date
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2016
Subject
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Advance Care Planning; ChildrenĀ and Young People; Interviews; Life-limiting Conditions; Life-threatening Illnesses; Parents
Creator
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Beecham E; Oostendorp L; Crocker J; Kelly P; Dinsdale A; Hemsley J; Russell J; Jones L; Bluebond-Langner M
Description
An account of the resource
BACKGROUND:
Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or experience of ACP.
OBJECTIVE:
To investigate how parents of children and young people with LLCs approach and experience ACP.
METHODS:
Open-ended, semi-structured interviews were conducted with parents of 18 children; nine children who were currently receiving palliative care services, and nine children who had received palliative care and died. Verbatim transcripts of audiotaped interviews were analysed following principles of grounded theory while acknowledging the use of deductive strategies, taking account of both the child's condition, and the timing and nature of decisions made.
RESULTS:
Parents reported having discussions and making decisions about the place of care, place of death and the limitation of treatment. Most decisions were made relatively late in the illness and by parents who wished to keep their options open. Parents reported different levels of involvement in a range of decisions; many wished to be involved in decision making but did not always feel able to do so.
DISCUSSION:
This study highlights that parents' approaches to decision making vary by the type of decision required. Their views may change over time, and it is important to allow them to keep their options open. We recommend that clinicians have regular discussions over the course of the illness in an effort to understand parents' approaches to particular decisions rather than to drive to closure prematurely.
Identifier
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10.1111/hex.12500
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).
2016
Advance Care Planning
Beecham E
Bluebond-Langner M
children and young people
Crocker J
Dinsdale A
Health Expectations
Hemsley J
Interviews
Jones L
Kelly P
Life-limiting Conditions
Life-threatening Illnesses
Oostendorp L
Parents
Russell J
September 2016 List