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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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February 2024 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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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
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2023
Subject
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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
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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
A name given to the resource
March 2024 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
March List 2024
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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Family-Centered Culture Care: Touched by an Angel
Publisher
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Journal of Clinical Ethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
ethics; mental stress; morality; psychology; religion; attitude to death; child; cultural anthropology; empathy; ethnology; family nursing; Hinduism; human; human relation; Impatiens; infant; newborn; nursing staff; Touch; treatment refusal
Creator
An entity primarily responsible for making the resource
Hernandez JA
Description
An account of the resource
An Asian Indian Hindu family chose no intervention and hospice care for their newborn with hypoplastic right heart syndrome as an ethical option, and the newborn expired after five days. Professional nursing integrates values-based practice and evidence-based care with cultural humility when providing culturally responsive family-centered culture care. Each person's worldview is unique as influenced by culture, language, and religion, among other factors. The Nursing Team sought to understand this family's collective Indian Hindu worldview and end-of-life beliefs, values, and practices, in view of the unique aspects of the situation while the team integrated evidence-based strategies to provide family-centered culture care. Parental care choices conflicted with those of the Nursing Team, and some nurses experienced moral distress and cultural dissonance when negotiating their deeply held cultural and religious views to advocate for the family. The inability to reconcile and integrate a stressful or traumatic experience impacts nurses' well-being and contributes to compassion fatigue. Nurses need to be intentional in accessing interventions that promote coping and healing and moral resilience. Reflection and cultural humility, assessment, and knowledge in context, increase evidence-based culture care and positive outcomes. U.S. society's views on ethical behavior continue to evolve, and some may argue that the law should place more limits on parents' right to choose or to refuse treatment for their infants and children. Moral distress can lead to moral resilience and satisfaction of compassion when nurses provide family-centered culture care with cultural responsiveness and integrate values-based practice with evidence-based care, and aim to first do no harm.
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).
2019
Attitude To Death
Child
cultural anthropology
Empathy
Ethics
ethnology
Family Nursing
Hernandez JA
Hinduism
Human
Human Relation
Impatiens
Infant
Journal of Clinical Ethics
March List 2024
Mental Stress
Morality
Newborn
Nursing Staff
Psychology
Religion
touch
Treatment Refusal
-
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
July 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
July List 2023
URL Address
<a href="http://doi.org/10.1016/j.phoj.2019.11.001" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.phoj.2019.11.001</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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Religious and cultural challenges in paediatrics palliative care: A review of literature
Publisher
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Journal of Pediatric Hematology/Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
cultural anthropology; palliative therapy; pediatrics; religion; autopsy; caregiver; coping behavior; data base; decision making; human; interpersonal communication; life; organ donor; Palliative Care; review; software; systematic review; terminal care; terminally ill patient
Creator
An entity primarily responsible for making the resource
Khalid K; Ku Md Saad S; Abd Ghani NA; Mohamed Abdul Kadher AN
Description
An account of the resource
Introduction: Paediatric palliative care aims to improve the quality of life of both the patients and their families when facing life-threatening illnesses. However, regions with strong religious and cultural practices made caring for ill children even more challenging due to the various, and at times, contrasting expectations from the families and the healthcare providers. Objective(s): This article aimed to discover the challenges of paediatric palliative care delivery in the context of culture and religion. Method(s): A systematic review was conducted through an online search of three databases for free open access articles and book chapters published between 2000 and 2018: Medline, Scopus and Google Scholar. Search key terms included: culture, custom, spiritual, ethnic, or religion [AND] end-of-life, palliative care, cancer, hospice, [AND] children or paediatrics. Result(s): Thirty-two (32) articles met the eligibility criteria. Out of these, five distinct themes emerged on the basis of implications for paediatrics palliative care. These include the (i) role of religion and culture in decision-making, (ii) the involvement of clerics towards the end-of-life, (iii) specific communication with the children and their caregivers about imminent death, (iv) the acceptance of autopsy and organ donation, and (v) spiritual coping strategies. Discussion(s): This review paper provided an insight into the impact of religion and topographical culture to the paediatrics end-of-life care. Cultural and religious traditions are dynamic and cannot be generalized to all families, hence a guided framework is recommended for clinicians working in diverse ethnic population in dealing with culturally sensitive, end-of-life care.Copyright © 2019 Pediatric Hematology Oncology Chapter of Indian Academy of Pediatrics
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.phoj.2019.11.001" target="_blank" rel="noreferrer noopener">10.1016/j.phoj.2019.11.001</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).
2019
Abd Ghani NA
Autopsy
Caregiver
Coping Behavior
cultural anthropology
Data Base
Decision Making
Human
Interpersonal Communication
Journal Of Pediatric Hematology/oncology
July List 2023
Khalid K
Ku Md Saad S
Life
Mohamed Abdul Kadher AN
organ donor
Palliative Care
Palliative Therapy
Pediatrics
Religion
Review
Software
Systematic Review
Terminal Care
terminally Ill Patient
-
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
October 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
October 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2019.0203" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2019.0203</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 Role of Child Life Specialists in Providing Culturally Responsive Palliative Care to the Mexican Origin Community
Publisher
An entity responsible for making the resource available
Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
human; palliative therapy; pediatric patient; coping behavior; terminal care; bereavement; grief; medical specialist; health care system; bereavement support; breathing exercise; child life specialist; communication skill; cultural anthropology; family centered care; guided imagery; health care delivery; health personnel attitude; letter; medical procedures; Mexican; relaxation training; religion; scope of practice
Creator
An entity primarily responsible for making the resource
Petkus J M
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2019.0203" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0203</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).
2019
Bereavement
Bereavement Support
breathing exercise
child life specialist
Communication Skill
Coping Behavior
cultural anthropology
Family Centered Care
Grief
guided imagery
Health Care Delivery
Health Care System
Health Personnel Attitude
Human
Journal of Palliative Medicine
Letter
Medical Procedures
Medical Specialist
Mexican
October 2019 List
Palliative Therapy
pediatric patient
Petkus J M
relaxation training
Religion
Scope Of Practice
Terminal Care