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40
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Dublin Core
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February 2024 List
Text
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Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.1002/14651858.CD014873.pub2" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/14651858.CD014873.pub2</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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A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments
Publisher
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Cochrane Database of Systematic Reviews
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Child; child; Adolescent; Quality of Life; human; inflammatory bowel disease; quality of life; Family; chronic pain; social support; family; child parent relation; social work; prognosis; systematic review; sibling; Chronic Pain; Analgesics Opioid; ethnography; Anthropology Cultural; personal experience; cultural anthropology; outcome assessment; health care personnel; wellbeing; health service; disease severity; adolescent; social isolation; headache; analgesia; pediatric patient; abdominal pain; social care; peer group; patient-reported outcome; pain assessment; Review; racism; narcotic analgesic agent; pain severity; fibromyalgia; complex regional pain syndrome; endometriosis; family life; juvenile rheumatoid arthritis; migraine; musculoskeletal pain
Creator
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France E; Uny I; Turley R; Thomson K; Noyes J; Jordan A; Forbat L; Caes L; Silveira Bianchim M
Description
An account of the resource
Background: Chronic non-cancer pain in childhood is widespread, affecting 20% to 35% of children and young people worldwide. For a sizeable number of children, chronic non-cancer pain has considerable negative impacts on their lives and quality of life, and leads to increased use of healthcare services and medication. In many countries, there are few services for managing children’s chronic non-cancer pain, with many services being inadequate. Fourteen Cochrane Reviews assessing the effects of pharmacological, psychological, psychosocial, dietary or physical activity interventions for managing children’s chronic non-cancer pain identified a lack of high-quality evidence to inform pain management. To design and deliver services and interventions that meet the needs of patients and their families, we need to understand how children with chronic non-cancer pain and their families experience pain, their views of services and treatments for chronic pain, and which outcomes are important to them. Objectives: 1. To synthesise qualitative studies that examine the experiences and perceptions of children with chronic non-cancer pain and their families regarding chronic non-cancer pain, treatments and services to inform the design and delivery of health and social care services, interventions and future research. 2. To explore whether our review findings help to explain the results of Cochrane Reviews of intervention effects of treatments for children's chronic non-cancer pain. 3. To determine if programme theories and outcomes of interventions match children and their families’ views of desired treatments and outcomes. 4. To use our findings to inform the selection and design of patient-reported outcome measures for use in chronic non-cancer pain studies and interventions and care provision to children and their families. The review questions are:. 1. How do children with chronic non-cancer pain and their families conceptualise chronic pain?. 2. How do children with chronic non-cancer pain and their families live with chronic pain?. 3. What do children with chronic non-cancer pain and their families think of how health and social care services respond to and manage their child’s chronic pain?. 4. What do children with chronic non-cancer pain and their families conceptualise as ‘good’ chronic pain management and what do they want to achieve from chronic pain management interventions and services?. Search methods: Review strategy: we comprehensively searched 12 bibliographic databases including MEDLINE, CINAHL, PsycInfo and grey literature sources, and conducted supplementary searches in 2020. We updated the database searches in September 2022. Selection criteria: To identify published and unpublished qualitative research with children aged 3 months to 18 years with chronic non-cancer pain and their families focusing on their perceptions, experiences and views of chronic pain, services and treatments. The final inclusion criteria were agreed with a patient and public involvement group of children and young people with chronic non-cancer pain and their families. Data collection and analysis: We conducted a qualitative evidence synthesis using meta-ethnography, a seven-phase, systematic, interpretive, inductive methodology that takes into account the contexts and meanings of the original studies. We assessed the richness of eligible studies and purposively sampled rich studies ensuring they addressed the review questions. Cochrane Qualitative Methods Implementation Group guidance guided sampling. We assessed the methodological limitations of studies using the Critical Appraisal Skills Programme tool. We extracted data on study aims, focus, characteristics and conceptual findings from study reports using NVivo software. We compared these study data to determine how the studies related to one another and grouped studies by pain conditions for synthesis. We used meta-ethnography to synthesise each group of studies separately before synthesising them all together. Analysis and interpretation of studies involved children ith chronic non-cancer pain and their families and has resulted in theory to inform service design and delivery. Sampling, organising studies for synthesis, and analysis and interpretation involved our patient and public involvement group who contributed throughout the conduct of the review. We used the GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) approach to assess our confidence in each review finding. We used a matrix approach to integrate our findings with existing Cochrane Reviews on treatment effectiveness for children’s chronic non-cancer pain. Main results: We synthesised 43 studies sampled from 170 eligible studies reported in 182 publications. Included studies involved 633 participants. GRADE-CERQual assessments of findings were mostly high (n = 21, 58%) or moderate (n = 12, 33%) confidence with three (8%) low or very low confidence. Poorly managed, moderate or severe chronic non-cancer pain had profound adverse impacts on family dynamics and relationships; family members’ emotions, well-being, autonomy and sense of self-identity; parenting strategies; friendships and socialising; children’s education and future employment prospects; and parental employment. Most children and parents understood chronic non-cancer pain as having an underlying biological cause and wanted curative treatment. However, families had difficulties seeking and obtaining support from health services to manage their child’s pain and its impacts. Children and parents felt that healthcare professionals did not always listen to their experiences and expertise, or believe the child's pain. Some families repeatedly visited health services seeking a diagnosis and cure. Over time, some children and families gave up hope of effective treatment. Outcomes measured within trials and Cochrane Reviews of intervention effects did not include some outcomes of importance to children and families, including impacts of pain on the whole family and absence of pain. Cochrane Reviews have mainly neglected a holistic biopsychosocial approach, which specifies the interrelatedness of biological, psychological and social aspects of illness, when selecting outcome measures and considering how chronic pain management interventions work. Authors' conclusions: We had high or moderate confidence in the evidence contributing to most review findings. Further research, especially into families' experiences of treatments and services, could strengthen the evidence for low or very low confidence findings. Future research should also explore families' experiences in low- to middle-income contexts; of pain treatments including opioid use in children, which remains controversial; and of social care services. We need development and testing of family-centred interventions and services acceptable to families. Future trials of children's chronic non-cancer pain interventions should include family-centred outcomes. Copyright © 2023 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/14651858.CD014873.pub2" target="_blank" rel="noreferrer noopener">10.1002/14651858.CD014873.pub2</a>
Rights
Information about rights held in and over the resource
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
abdominal pain
Adolescent
Analgesia
Analgesics Opioid
Anthropology Cultural
Caes L
Child
Child Parent Relation
Chronic Pain
Cochrane Database of Systematic Reviews
Complex Regional Pain Syndrome
cultural anthropology
Disease Severity
endometriosis
ethnography
Family
Family Life
February List 2024
Fibromyalgia
Forbat L
France E
Headache
Health Care Personnel
Health Service
Human
Humans
inflammatory bowel disease
Jordan A
juvenile rheumatoid arthritis
migraine
musculoskeletal pain
narcotic analgesic agent
Noyes J
outcome assessment
Pain Assessment
Pain Severity
patient-reported outcome
pediatric patient
Peer Group
Personal Experience
Prognosis
Quality Of Life
racism
Review
Sibling
Silveira Bianchim M
Social Care
Social Isolation
Social Support
Social Work
Systematic Review
Thomson K
Turley R
Uny I
Wellbeing
-
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/10.1177/1367493513485825" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493513485825</a>
<a href="http://chc.sagepub.com/content/18/3/230" target="_blank" rel="noreferrer">http://chc.sagepub.com/content/18/3/230</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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A relational understanding of sibling experiences of children with rare life-limiting conditions Findings from a qualitative study
Publisher
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Journal Of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Palliative Care; qualitative approaches; Siblings
Creator
An entity primarily responsible for making the resource
Malcolm C; Gibson F; Adams S; Anderson G; Forbat L
Description
An account of the resource
Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterised by progressive and permanent physical and cognitive decline. The impact of such conditions on families, and notably on siblings, has not yet been described or documented. This paper presents data from a UK-wide study that sought to understand the family experience of supporting a child with the rare degenerative LLCs of MPS and Batten disease. The aim of this paper is to report sibling experiences related to these rare degenerative and progressive conditions, in order to inform the future development of supportive interventions. Eight siblings of children with MPS (n = 7) and Batten Disease (n = 1) participated in semi-structured qualitative interviews. A card sort technique was utilised to support and engage the children. Siblings are clearly impacted emotionally, pragmatically and relationally by the ill health of another child in the family. The data indicate four key themes which demonstrate impacts on siblings: perceptions of the condition and its symptoms, impact on daily life, emotional consequences and ways of coping. Siblings often had considerable knowledge of the condition and took on important roles in symptom management. However, these experiences were in the context of managing relationships within the family (often protecting parents from an awareness of how much they knew) and relationships at school (including distraction from learning and being bullied by peers). The data highlight how sibling experiences are generated through a combination of negative disability discourses and support through peers and family members. The data indicate how these features shift as a consequence of witnessing the advancement of their brother’s or sister’s condition and the emotional sequelae of disease progression. Exploration of siblings’ experiences of living with such rare progressive and degenerative LLCs suggest the focus of interventions to support this group should address their emotional health and ways to overcome isolation and build connections with other siblings who share their unique experiences. Critically, the data suggest that sibling support should be cognisant of the trajectory of the illness as well as the family, school and peer relational contexts that siblings inhabit.
2014-09
Identifier
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<a href="http://doi.org/10.1177/1367493513485825" target="_blank" rel="noreferrer">10.1177/1367493513485825</a>
Rights
Information about rights held in and over the resource
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
The nature or genre of the resource
Journal Article
2014
Adams S
Anderson G
Backlog
Forbat L
Gibson F
Journal Article
Journal Of Child Health Care
Malcolm C
Palliative Care
qualitative approaches
Siblings
-
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/10.1177/0269216308098214" target="_blank" rel="noreferrer">http://doi.org/10.1177/0269216308098214</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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Exploring the experiences and perspectives of families using a children's hospice and professionals providing hospice care to identify future research priorities for children's hospice care
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Humans; Attitude of Health Personnel; Health Services Accessibility; Health Services Needs and Demand; Qualitative Research; Focus Groups; Needs Assessment; Respite Care; Scotland; Charting the Territory; Family/psychology; Research/organization & administration; Palliative Care/organization & administration/standards; Hospice Care/organization & administration/standards; Terminal Care/organization & administration/psychology/standards
Creator
An entity primarily responsible for making the resource
Malcolm C; Forbat L; Knighting K; Kearney N
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216308098214" target="_blank" rel="noreferrer">10.1177/0269216308098214</a>
Rights
Information about rights held in and over the resource
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
The nature or genre of the resource
Journal Article
Description
An account of the resource
The main objective of this study is to generate a list of priority topics for children's hospice care research in Scotland from the perspective of its key stakeholders. The method consists of qualitative semi-structured interviews with families using hospice services (n = 5), four focus groups with hospice staff and volunteers (n = 44) and telephone interviews with professionals associated with the hospice (n = 18). Fourteen broad themes emerged following thematic content and interpretive analysis of the interview data. Some of the research themes were specific to certain stakeholder groups, whereas other themes were identified unanimously across all the stakeholder groups as being priority areas for future research. Increasing awareness of and improving access to children's hospice care, hospice and respite care needs of young people, community/home care and issues related to supporting the wider family arose, independently, in all three stakeholder groups as being priority topics for future research. In conclusion, a greater evidence base is required in the field of children's palliative care and the topics researched should be identified and led by those most closely involved in the hospices. Engaging families and care providers in the process of identifying research priorities resulted in the development of an extensive research agenda, which will contribute to quality hospice care for children and families.
2008
Attitude Of Health Personnel
Backlog
Family/psychology
Focus Groups
Forbat L
Health Services Accessibility
Health Services Needs And Demand
Hospice Care/organization & administration/standards
Humans
Journal Article
Kearney N
Knighting K
Malcolm C
Needs Assessment
Palliative Care/organization & administration/standards
Palliative Medicine
Qualitative Research
Research/organization & administration
Respite Care
Scotland
Terminal Care/organization & administration/psychology/standards
-
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/10.1177/0269216309104061" target="_blank" rel="noreferrer">http://doi.org/10.1177/0269216309104061</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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Prioritization of future research topics for children's hospice care by its key stakeholders: a Delphi study
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Child; Humans; Terminally Ill; Family; Attitude of Health Personnel; Focus Groups; Needs Assessment; Delphi Technique; Scotland; adolescent; Palliative Care/organization & administration; Charting the Territory; Research/organization & administration; Hospice Care/organization & administration
Creator
An entity primarily responsible for making the resource
Malcolm C; Knighting K; Forbat L; Kearney N
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216309104061" target="_blank" rel="noreferrer">10.1177/0269216309104061</a>
Rights
Information about rights held in and over the resource
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
The nature or genre of the resource
Journal Article
Description
An account of the resource
The Delphi process, widely used in health research to seek consensus on key issues amongst large stakeholder groups, was adopted to allow families, hospice staff/volunteers and linked professionals to identify and prioritize future research priorities for children's hospice care. In the qualitative Round 1, interviews with families (n = 5), linked professionals (n = 18) and focus groups with hospice staff and volunteers (n = 44) led to the generation of 56 research topics categorised within 14 broad themes. To give a larger number of stakeholders (n = 621) (including families n = 293; hospice staff/volunteers n = 216 and professionals n = 112) the opportunity to rate the importance of each research topic and seek group consensus on the future research priorities for children's hospice care, subsequent Rounds 2 and 3 involved the use of postal questionnaires. Response rates to questionnaires were 44% in Round 2 (274/621) and 83% in Round 3 (204/247). Participants prioritized research topics relating to 1) hospice and respite care needs of young people (aged 16 +), 2) pain and symptom management and 3) bereavement and end-of-life care. There was wide acknowledgement by those took part in the process of the difficulty in rating the topics, and emphasis on the fact that all of the topics raised during the project are of high importance and merit further research. The current salient issues perceived by key stakeholders as being the research priorities for children's hospice care were identified. Addressing these priority topics for research would further contribute to the development of a much needed evidence base in children's hospice and palliative care research and optimise the delivery of children's hospice services that are underpinned by valid and robust research.
2009
Adolescent
Attitude Of Health Personnel
Backlog
Child
Delphi Technique
Family
Focus Groups
Forbat L
Hospice Care/organization & administration
Humans
Journal Article
Kearney N
Knighting K
Malcolm C
Needs Assessment
Palliative Care/organization & Administration
Palliative Medicine
Research/organization & administration
Scotland
Terminally Ill
-
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/10.1177/0269216310391346" target="_blank" rel="noreferrer">http://doi.org/10.1177/0269216310391346</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
A name given to the resource
Challenging symptom profiles of life-limiting conditions in children: a survey of care professionals and families
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Creator
An entity primarily responsible for making the resource
Malcolm C; Forbat L; Anderson G; Gibson F; Hain R
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216310391346" target="_blank" rel="noreferrer">10.1177/0269216310391346</a>
Rights
Information about rights held in and over the resource
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
The nature or genre of the resource
Journal Article
2011
Anderson G
Backlog
Forbat L
Gibson F
Hain R
Journal Article
Malcolm C
Palliative Medicine
-
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/10.1111/j.1651-2227.2012.02680.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1651-2227.2012.02680.x</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
A name given to the resource
Challenging symptoms in children with rare life-limiting conditions: findings from a prospective diary and interview study with families
Publisher
An entity responsible for making the resource available
Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
Child; Female; Humans; Male; Young Adult; Interviews as Topic; Prospective Studies; Disease Progression; Medical Records; Family Health; adolescent; Preschool; Charting the Territory; Psychological; Stress; Mucopolysaccharidoses/diagnosis/psychology/therapy; Mucopolysaccharidosis I/diagnosis/therapy; Mucopolysaccharidosis III/diagnosis/therapy; Neuronal Ceroid-Lipofuscinoses/diagnosis/psychology/therapy
Creator
An entity primarily responsible for making the resource
Malcolm C; Hain R; Gibson F; Adams S; Anderson G; Forbat L
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1651-2227.2012.02680.x" target="_blank" rel="noreferrer">10.1111/j.1651-2227.2012.02680.x</a>
Rights
Information about rights held in and over the resource
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
The nature or genre of the resource
Journal Article
2012
Acta Paediatrica
Adams S
Adolescent
Anderson G
Backlog
Child
Disease Progression
Family Health
Female
Forbat L
Gibson F
Hain R
Humans
Interviews As Topic
Journal Article
Malcolm C
Male
Medical Records
Mucopolysaccharidoses/diagnosis/psychology/therapy
Mucopolysaccharidosis I/diagnosis/therapy
Mucopolysaccharidosis III/diagnosis/therapy
Neuronal Ceroid-Lipofuscinoses/diagnosis/psychology/therapy
Preschool
Prospective Studies
Psychological
Stress
Young Adult