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40
2310
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April 2024 List
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April List 2024
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<a href="http://doi.org/10.1371/journal.pone.0293025" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1371/journal.pone.0293025</a>
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Consumer and provider perceptions of the specialist unit model of care: A qualitative study
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PLoS One
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2024
Subject
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Humans; Child; Qualitative Research; Palliative Care; Australia
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Long JC; Carrigan A; Roberts N; Clay-Williams R; Hibbert PD; Zurynski Y; Maka K; Loy G; Braithwaite J
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Background: Specialist care units cater to targeted cohorts of patients, applying evidence-based practice to people with a specific condition (e.g., dementia) or meeting other specific criteria (e.g., children). This paper aimed to collate perceptions of local consumers and health providers around specialist care units, as a model of care that may be considered for a new local healthcare facility. Methods: This was a qualitative study using two-hour workshops and interviews to collect data. Participants were consumers and health providers in the planned facility's catchment: 49 suburbs in metropolitan Australia. Consumers and health providers were recruited through advertisements and emails. An initial survey collected demographic details. Consumers and health providers participated in separate two-hour workshops in which a scenario around the specialist unit model was presented and discussion on benefits, barriers and enablers of the model was led by researchers. Detailed notes were taken for analysis. Results: Five consumer workshops (n = 22 participants) and five health provider workshops (n = 42) were conducted. Participants were representative of this culturally diverse region. Factors identified by participants as relevant to the specialist unit model of care included: accessibility; a perceived narrow scope of practice; coordination with other services; resources and infrastructure; and awareness and expectations of the units. Some factors identified as risks or barriers when absent were identified as strengths and enablers when present by both groups of participants. Conclusions: Positive views of the model centred on the higher perceived quality of care received in the units. Negative views centred on a perceived narrow scope of care and lack of flexibility. Consumers hinted, and providers stated explicitly, that the model needed to be complemented by an integrated model of care model to enable continuity of care and easy transfer of patients into and out of the specialist unit.
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<a href="http://doi.org/10.1371/journal.pone.0293025" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0293025</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).
2024
April List 2024
Australia
Braithwaite J
Carrigan A
Child
Clay-Williams R
Hibbert PD
Humans
Long JC
Loy G
Maka K
Palliative Care
PLoS One
Qualitative Research
Roberts N
Zurynski Y
-
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April 2024 List
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April List 2024
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<a href="http://doi.org/10.1080/17482631.2024.2321645" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/17482631.2024.2321645</a>
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"What about me?": lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition
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International Journal of Qualitative Studies on Health and Well-being
Date
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2024
Subject
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Humans; Parents; Child; child; Male; Attention; Emotions; sibling; life-threatening condition; Adaptation Psychological; life-limiting condition; paediatric palliative care; lived experience; Siblings; Hermeneutics
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Kittelsen TB; Castor C; Lee A; Kvarme LG; Winger A
Description
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BACKGROUND: There is a lack of knowledge regarding siblings' experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings' perspectives are often expressed through their parents and not by siblings themselves. METHOD: This study has a qualitative design within hermeneutic phenomenology. Thirteen siblings (ages 3-29) of children with cancer or genetic conditions participated in semi-structured interviews. Analyses followed a thematic analysis guided by van Manen's lifeexistentials. RESULTS: One overall theme, "What about me?", illustrates that siblings of children with LT/LL conditions are dealing with their own challenges and needs in the situation while also struggling to receive attention from their parents. The overall theme derives from three subthemes: living with heavy strains, feeling disregarded, and having needs of one's own. CONCLUSION: The study revealed that siblings' own needs compete with the needs of the ill child, resulting in the risk of siblings taking a step back rather than expressing what they might actually need themselves. These findings can inform healthcare professionals on the importance of educating and supporting parents and the surrounding community close to the sibling, for example, by helping schoolteachers understand how to meet siblings' needs.
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<a href="http://doi.org/10.1080/17482631.2024.2321645" target="_blank" rel="noreferrer noopener">10.1080/17482631.2024.2321645</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).
2024
Adaptation Psychological
April List 2024
Attention
Castor C
Child
Emotions
Hermeneutics
Humans
International Journal Of Qualitative Studies On Health And Well-being
Kittelsen TB
Kvarme LG
Lee A
Life-limiting Condition
Life-threatening Condition
lived experience
Male
paediatric palliative care
Parents
Sibling
Siblings
Winger A
-
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April List 2024
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<a href="http://doi.org/10.1089/jpm.2023.0134" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2023.0134</a>
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Title
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Grieving Children' Death in an Intensive Care Unit: Implementation of a Standardized Process
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Journal of Palliative Medicine
Date
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2024
Subject
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Humans; Child; Grief; Intensive Care Units; Health Personnel; Only Child; Terminal Care; Bereavement; Burnout Professional
Creator
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Delgado-Corcoran C; Wawrzynski SE; Mansfield K; Fuchs E; Yeates C; Flaherty BF; Harousseau M; Cook L; Epps JV
Description
An account of the resource
Background: The grief that accompanies witnessing the death of a child puts health care professionals at risk of secondary trauma, burnout, and turnover when left unaddressed. Objective: Support staff well-being and promote resiliency. Methods: Descriptive implementation of a structured, peer-to-peer bereavement support program for intensive care unit (ICU) staff at a tertiary children's hospital. Results: Thirty-five virtual sessions were held over the period of one year.Through these sessions, participants shared perspectives and normalized reactions, and explored potential coping strategies. Post-session feedback surveys demonstrated the negative impact of a death on the personal or work life of ICU staff. Additionally, nearly all reported some level of burnout. Conclusions: The sessions were feasible and positively impacted staff coping and well-being. Barriers and facilitators to session attendance, as well as suggestions for improvement, were also explored. Implications for practice and future research are discussed. No clinical trial registration is applicable.
Identifier
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<a href="http://doi.org/10.1089/jpm.2023.0134" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0134</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).
2024
April List 2024
Bereavement
Burnout Professional
Child
Cook L
Delgado-Corcoran C
Epps JV
Flaherty BF
Fuchs E
Grief
Harousseau M
Health Personnel
Humans
Intensive Care Units
Journal of Palliative Medicine
Mansfield K
Only Child
Terminal Care
Wawrzynski SE
Yeates C
-
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February 2024 List
Text
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February List 2024
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<a href="http://doi.org/10.1002/14651858.CD014873.pub2" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/14651858.CD014873.pub2</a>
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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
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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
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<a href="http://doi.org/10.1002/14651858.CD014873.pub2" target="_blank" rel="noreferrer noopener">10.1002/14651858.CD014873.pub2</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
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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Title
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1111/ajr.12958" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/ajr.12958</a>
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Fifteen years of shared care for paediatric oncology, haematology and palliative patients across Queensland: The role of Regional Case Managers
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Australian Journal of Rural Health
Date
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2023
Subject
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Humans; Child; Hospitals; Neoplasms/th [Therapy]; Case Management; Neoplasms; Queensland; Case Managers; Hematology
Creator
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Slater P; Hastings Y; Nicholson J; Noyes M; Benitez L; Pollock K; Peacock R; Cox A; Gunning R; Caris K; Petersen D; Henry C; Spanner R; Beckett K; Chisholm C
Description
An account of the resource
Objective: A shared care model was implemented in 2006 in Queensland to facilitate paediatric oncology, haematology and palliative care patients receiving care as close to home as possible. Following initial diagnosis, care planning and treatment at the tertiary children's hospital, appropriate local care was coordinated by Regional Case Managers (RCMs) established at each of 10 Shared Care Units (SCUs). This enabled safe and quality regional care supported by a statewide network providing clinical governance and education. This paper examines learnings from 15 years of this shared care.
Setting: Ten hospitals throughout Queensland facilitated a statewide model of shared care for paediatric oncology, haematology and palliative care patients, supported by a tertiary hub in Brisbane.
Participants: Regional Case Managers in Shared Care Units and their supporting staff.
Design: Staff from SCUs were surveyed and focus group interviews conducted.
Results: The paper reviews the attributes, knowledge and experience required for RCMs. Standards of care were supported through education workshops, clinical placements, chemotherapy credentialing, guidelines and standards. RCMs facilitated communication and information sharing with the tertiary centre, advocated for their cohort of patients locally and streamlined and supported the family's experience of care.
Conclusion: The RCM role provided invaluable clinical leadership for the care of paediatric oncology, haematology and palliative patients across Queensland. As new treatments evolve, the expertise and coordination provided by the RCMs will be even more critical. Achieving high-quality shared care outcomes is underpinned by the RCMs drive to achieve statewide safety and support for this cohort of children.
Identifier
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<a href="http://doi.org/10.1111/ajr.12958" target="_blank" rel="noreferrer noopener">10.1111/ajr.12958</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
2023 SE5 - Low Resource Setting
Australian Journal of Rural Health
Beckett K
Benitez L
Caris K
Case Management
Case Managers
Child
Chisholm C
Cox A
Gunning R
Hastings Y
Hematology
Henry C
Hospitals
Humans
Neoplasms
Neoplasms/th [therapy]
Nicholson J
Noyes M
Peacock R
Petersen D
Pollock K
Queensland
Slater P
Spanner R
-
Dublin Core
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1200/go.22.00281" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1200/go.22.00281</a>
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Title
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Communication of Early Integration of Palliative Care for Children With Cancer in Latin America: The Care as a Vessel Metaphor
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JCO Global Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Humans; Child; Communication; Palliative Care; Latin America; Neoplasms/therapy; Metaphor; Latin America/epidemiology
Creator
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Garcia-Quintero X; Cleves D; Cuervo MI; McNeil M; Salek M; Robertson EG; Gomez W; Baker JN; Kaye EC
Description
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``Over the past two decades, pediatric palliative care (PPC) has evolved significantly, moving away from the concept of care provided solely at end-of-life and toward the concept of holistic, supportive care provided synergistically with disease-directed therapy across the illness course.1 Presently, the WHO defines PPC as holistic care involving all aspects of the life of a child with serious illness and their family, including the care and support of the body, mind, and spirit.2 As such, the WHO advocates for PPC provision to begin at the time of diagnosis of a life-limiting condition and continue across treatment, regardless of whether the goal is cure, life prolongation, or comfort.3 Numerous guidelines endorsed by national organizations similarly advocate for early integration of PPC in the care of patients with pediatric cancer,4-7 recognizing that involvement of PPC concurrently with cancer-directed treatment promotes patient-and family-centered care, aligns treatment with goals of care, and optimizes supportive care and quality of life.2,4-8...``
Identifier
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<a href="http://doi.org/10.1200/go.22.00281" target="_blank" rel="noreferrer noopener">10.1200/go.22.00281</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
2023 SE5 - Low Resource Setting
Baker JN
Child
Cleves D
Communication
Cuervo MI
García-Quintero X
Gomez W
Humans
JCO Global Oncology
Kaye EC
Latin America
Latin America/epidemiology
McNeil M
Metaphor
Neoplasms/therapy
Palliative Care
Robertson EG
Salek M
-
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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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2022.51496" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1001/jamanetworkopen.2022.51496</a>
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Title
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Ideal vs Actual Timing of Palliative Care Integration for Children With Cancer in Latin America
Publisher
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JAMA Network Open
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; Female; Palliative Care; Quality of Life; Physicians; Only Child; Latin America; Neoplasms/therapy
Creator
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McNeil MJ; Ehrlich B; Wang H; Bustamante M; Dussel V; Friedrich P; Garcia Quintero X; Gillipelli SR; Gómez García W; Graetz D; Kaye EC; Metzger M; Sabato Danon CV; Devidas M; Baker JN; Agulnik A
Description
An account of the resource
IMPORTANCE: Early integration of pediatric palliative care (PPC) for children with cancer is critical for the quality of life of both patient and family. To improve access to PPC in resource-limited settings, barriers to early integration must be understood. OBJECTIVES: To evaluate the ideal vs actual timing of PPC integration for children with cancer and to uncover barriers to early integration identified by physicians in Latin America. DESIGN, SETTING, AND PARTICIPANTS: The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey was distributed electronically from August 1, 2020, to January 31, 2021, to physicians who treat children with cancer in 17 countries in Latin America. MAIN OUTCOMES AND MEASURES: The ADAPT survey queried for understanding of ideal vs actual timing of PPC for children with cancer and for identification of barriers to PPC integration. Descriptive statistics were used to summarize the data. For secondary analyses, a comparison of the associations of previous palliative care training with physician specialty was performed using the Pearson χ2 test or the Fisher exact test. The McNemar test was used to assess responses regarding the actual vs ideal timing of PPC consultation. Analysis of variance was used to compare mean values for perceived barriers by country income level. Answers to open-ended questions were analyzed qualitatively. RESULTS: A total of 831 physicians (578 women [69.6%]; 275 physicians [33.1%] aged <35 years and 556 physicians [66.9%] aged ≥35 years) from 17 countries participated, with an overall response rate of 37.9% (831 of 2193) and a median country response rate of 51.4% (range, 22.2%-88.9%). Most respondents (572 [68.8%]) said that PPC should be involved from diagnosis, but only 117 (14.1%) stated that this occurred at their institution (P < .001). The most significantly ranked barriers to PPC were lack of home-based services (713 [85.8%]), personnel (654 [78.7%]), and knowledge about PPC (693 [83.4%]), along with physician (676 [81.3%]) and family (603 [72.6%]) discomfort about PPC involvement. In addition, these barriers were rated as more important in lower-middle income countries compared with upper-middle income countries and high-income countries. CONCLUSIONS AND RELEVANCE: This study highlights the discrepancy between ideal and actual timing of PPC for children with cancer and barriers to early PPC integration in Latin America. Interventions addressing access to PPC resources, didactic training, and clinical education (with a particular focus on equitable access to basic resources and support) are critical to improve the timing and quality of PPC in the region.
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<a href="http://doi.org/10.1001/jamanetworkopen.2022.51496" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2022.51496</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
2023 SE5 - Low Resource Setting
Agulnik A
Baker JN
Bustamante M
Child
Devidas M
Dussel V
Ehrlich B
Female
Friedrich P
Garcia Quintero X
Gillipelli SR
Gomez Garcia W
Graetz D
Humans
JAMA Network Open
Kaye EC
Latin America
McNeil MJ
Metzger M
Neoplasms/therapy
Only Child
Palliative Care
Physicians
Quality Of Life
Sabato Danon CV
Wang H
-
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2023 Special Edition 5 - Low Resource Setting List
Text
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2023 SE5 - Low Resource Setting
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<a href="http://doi.org/10.1002/pon.6002" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pon.6002</a>
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Unmet palliative care needs of a child with cancer in Indonesia
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Psycho-Oncology
Date
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2023
Subject
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Humans; Child; Palliative Care; Neoplasms/th [Therapy]; Neoplasms; Only Child; Hospice and Palliative Care Nursing; Indonesia
Creator
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Vassileva S; Pangarso AWS; Mulatsih S; Sitaresmi M; Kaspers G; Mostert S
Description
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Key points Childhood cancer survival varies greatly between high-income (80%) versus Low and middle-income countries (LMIC) (<20%). To bridge this gap, provision of aggressive curative treatment has been prioritized in latter countries. Palliative care (PC), by contrast, has received little or no attention When children who can no longer be cured from cancer continue aggressive treatment, they may suffer unnecessarily from pain, discomfort and low quality-of-life during prolonged periods In many LMIC, families are often not given the opportunity to participate in decision-making whether they want to extend the life of their children or focus on relieving pain and discomfort This case report illustrates difficulties that Indonesian families may face when their child is diagnosed with cancer, receives intensive chemotherapy despite poor prognosis and severe side-effects, and is not informed about choices of treatment children have during final illness This study highlights the importance to start PC immediately at diagnosis. Both physical and psychosocial wellbeing of patients need to be closely monitored through regular symptom burden assessments. Training on open communication in PC is required in universities and hospitals to enable shared decision-making and improve quality-of-life of children and their families
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<a href="http://doi.org/10.1002/pon.6002" target="_blank" rel="noreferrer noopener">10.1002/pon.6002</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
2023 SE5 - Low Resource Setting
Child
Hospice And Palliative Care Nursing
Humans
Indonesia
Kaspers G
Mostert S
Mulatsih S
Neoplasms
Neoplasms/th [therapy]
Only Child
Palliative Care
Pangarso AWS
Psycho-Oncology
Sitaresmi M
Vassileva S
-
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2023 Special Edition 5 - Low Resource Setting List
Text
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2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1002/cam4.5213" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/cam4.5213</a>
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Regional adaptation of the education in palliative and end-of-life Care Pediatrics (EPEC-Pediatrics) curriculum in Eurasia
Publisher
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Cancer Medicine
Date
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2023
Subject
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Humans; Child; pediatric palliative care; Terminal Care; education; Palliative Care/methods; Curriculum; Covid-19; Terminal Care; pediatric oncology; Eurasia; Enteropathogenic Escherichia coli
Creator
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McNeil MJ; Ehrlich B; Yakimkova T; Wang H; Mishkova V; Bezler Z; Kumirova E; Madni A; Movsisyan N; Williams K; Baizakova B; Borisevich M; Chatman G; Erimbetova I; Quintero XG; Golban R; Kirby B; Nunez P; Ranadive R; Sakhar N; Sonnenfelt J; Volkova A; Moreira D; Friedrichsdorf SJ; Wolfe J; Remke S; Hauser J; Devidas M; Baker JN; Agulnik A
Description
An account of the resource
BACKGROUND: Pediatric palliative care (PPC) is a priority to improve pediatric hematology oncology (PHO) care in Eurasia. However, there are limited regional opportunities for PPC education. We describe the adaptation and implementation of a bilingual end-user Education in Palliative and End-of-Life Care (EPEC)-Pediatrics course for PHO clinicians in Eurasia. METHODS: Due to COVID-19, this course was delivered virtually, consisting of prerecorded, asynchronous lectures, and a bilingual workshop with interactive lectures and small group sessions. A pre-postcourse design was used to evaluate the knowledge acquisition of the participants including their knowledge alignment with World Health Organization (WHO) guidance, ideal timing of palliative care, and comfort in providing palliative care to their patients. Questions were mostly quantitative with multiple choice or Likert scale options, supplemented by free-text responses. RESULTS: A total of 44 (76%) participants from 14 countries completed all components of the course including pre- and postcourse assessments. Participant alignment with WHO guidance improved from 75% in the pre- to 90% in the postcourse assessments (p < 0.001). After participation, 93% felt more confident controlling the suffering of children at the end of life, 91% felt more confident in prescribing opioids and managing pain, and 98% better understood how to hold difficult conversations with patients and families. Most participants (98%) stated that they will change their clinical practice based on the skills and knowledge gained in this course. CONCLUSIONS: We present a successful regional adaptation of the EPEC-Pediatrics curriculum, including novel delivery of course content via a virtual bilingual format. This course resulted in significant improvement in participant attitudes and knowledge of PPC along with an understanding of the ideal timing of palliative care consultation and comfort in providing PPC to children with cancer. We plan to incorporate participant feedback to improve the course and repeat it annually to improve access to high-quality palliative care education for PHO clinicians in Eurasia.
Identifier
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<a href="http://doi.org/10.1002/cam4.5213" target="_blank" rel="noreferrer noopener">10.1002/cam4.5213</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
2023 SE5 - Low Resource Setting
Agulnik A
Baizakova B
Baker JN
Bezler Z
Borisevich M
Cancer Medicine
Chatman G
Child
COVID-19
Curriculum
Devidas M
Education
Ehrlich B
Enteropathogenic Escherichia coli
Erimbetova I
Eurasia
Friedrichsdorf SJ
Golban R
Hauser J
Humans
Kirby B
Kumirova E
Madni A
McNeil MJ
Mishkova V
Moreira D
Movsisyan N
Nunez P
Palliative Care/methods
Pediatric Oncology
Pediatric Palliative Care
Quintero XG
Ranadive R
Remke S
Sakhar N
Sonnenfelt J
Terminal Care
Volkova A
Wang H
Williams K
Wolfe J
Yakimkova T
-
Dublin Core
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1177/02692163221136896" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163221136896</a>
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Serious health-related suffering experienced by children with disability and their families living in Bangladesh: A scoping review
Publisher
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Palliative Medicine
Date
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2023
Subject
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Humans; Child; Bangladesh; Disabled Children; Palliative Care/mt [Methods]; Hospice Care; Hospices; Only Child; Disabled Children
Creator
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Smith SE; Chowdhury MK; Doherty M; Morgan DD
Description
An account of the resource
BACKGROUND: In 2020, the International Association for Hospice and Palliative Care redefined palliative care to incorporate the concept of serious health-related suffering. An estimated 21 million children globally live with conditions which would benefit from a palliative approach to relieve suffering. Bangladesh is a lower-middle income country with isolated provision of palliative care., AIM: To synthesise existing evidence describing serious health-related suffering of children with disability and their families living in Bangladesh and the intersection between this suffering, palliative care and rehabilitation., DESIGN: Scoping review methodology., DATA SOURCES: A search strategy related to serious health-related suffering and childhood disability was applied to online databases and grey literature. English language studies (1990-2021) were included. Papers pertaining to serious health-related suffering of typically developing children and those over eighteen years were excluded. Data which addressed the three domains of serious health-related suffering (physical, social and emotional/spiritual) were extracted. Palliative care interventions were assessed with a pre-existing checklist., RESULTS: Forty-six studies were included, representing ten different methodologies. Sample sizes ranged from 11 to 2582 participants, with 87% of studies including children with cerebral palsy. Serious health-related suffering was described in 100% of the studies, only 14 of the studies described specific interventions to mitigate suffering. Convergence between palliative care and rehabilitation approaches was evident., CONCLUSION: Findings document the extensive nature and burden of serious childhood health-related suffering that may be remediated by a palliative approach. They highlight the urgent need to prioritise service development and research in this area.
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<a href="http://doi.org/10.1177/02692163221136896" target="_blank" rel="noreferrer noopener">10.1177/02692163221136896</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
2023 SE5 - Low Resource Setting
Bangladesh
Child
Chowdhury MK
Disabled Children
Doherty M
Hospice Care
Hospices
Humans
Morgan DD
Only Child
Palliative Care/mt [methods]
Palliative Medicine
Smith SE
-
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1080/24694193.2022.2085821" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/24694193.2022.2085821</a>
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The Cry to Be Involved: Experiences of Caregivers on Participation in Decision Making and Care Provision at Mercy James PICU in Blantyre, Malawi
Publisher
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Comprehensive Child and Adolescent Nursing
Date
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2023
Subject
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Humans; Child; Female; Male; Decision Making; Intensive Care Units Pediatric; Qualitative Research; Hospitalization; Crying; Malawi; Caregivers
Creator
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Chasweka G; Majamanda MD; Namathanga A
Description
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A child's illness and admission in a hospital are stressful and can negatively affect the child and his/her caregivers. The stress is further exacerbated when a child is critically ill and has been admitted to an intensive care unit (ICU). The effects can be reduced when caregivers of the sick children are present and involved in decision making and actual care of their hospitalized children, a care model called family-centered care. Malawi has adopted family-centered care model in the newly instituted Mercy James Pediatric ICU. Little is known about experiences of caregivers with FCC in Malawi. This qualitative study was therefore conducted to explore experiences of caregivers on their involvement in decision making and care at Mercy James Pediatric ICU in Blantyre, Malawi. This was a descriptive qualitative study with a sample size of fifteen participants, however, data saturation was reached with ten participants. One on one in-depth interviews were conducted among a purposively selected sample of ten caregivers whose children had been discharged from the PICU. Content analysis was deductively and manually undertaken to analyze data with the aid of delve software to organize the data. Findings show that not every caregiver was involved in the decision making of their children's care, and if they did, it was not adequate. Barriers to effective involvement such as using a foreign language had a negative impact on comprehensive involvement of caregivers in decision making for their children's care. All participants were, however, involved in the physical care of their children. It is important that health care workers should continuously encourage caregivers to get involved in the decision making and care of their children.
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<a href="http://doi.org/10.1080/24694193.2022.2085821" target="_blank" rel="noreferrer noopener">10.1080/24694193.2022.2085821</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
2023 SE5 - Low Resource Setting
Caregivers
Chasweka G
Child
Comprehensive Child and Adolescent Nursing
Crying
Decision Making
Female
Hospitalization
Humans
Intensive Care Units Pediatric
Majamanda MD
Malawi
Male
Namathanga A
Qualitative Research
-
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1186/s12904-023-01195-4" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01195-4</a>
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Impact of an outpatient palliative care consultation and symptom clusters in terminal patients at a tertiary care center in Pakistan
Publisher
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BMC Palliative Care
Date
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2023
Subject
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Humans; Female; Male; Palliative Care; Infant; Quality of Life; Syndrome; Tertiary Care Centers; Outpatients; Palliative Care; Referral and Consultation; Neoplasms/th [Therapy]; Symptom Assessment; Neoplasms; Neoplasms/co [Complications]; Neoplasms/ep [Epidemiology]; Pakistan
Creator
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Rafaqat W; Syed AR; Ahmed IM; Hashmi S; Jabeen I; Rajwani S; Qamar U; Waqar MA
Description
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Background: Patients with terminal diseases may benefit physically and psychosocially from an outpatient palliative care visit. Palliative care services are limited in Pakistan. An improved understanding of the symptom clusters present in our population is needed. The first outpatient palliative care center in Karachi, Pakistan, was established at our tertiary care institution. The primary aim of this study was to evaluate the impact of a palliative care outpatient consultation on symptom burden in patients with a terminal diagnosis. The secondary aim was to analyze the symptom clusters present in our population. Methods: Patients with a terminal diagnosis referred to our outpatient palliative department between August 2020-August 2022 were enrolled. The Edmonton Symptom Assessment Scale (ESAS) questionnaire was administered at the initial visit and the first follow-up visit at one month. Change in symptom burden was assessed using a Wilcoxon signed ranks test. A principal component analysis with varimax rotation was performed on the symptoms reported at the initial visit to evaluate symptom clusters. The palliative performance scale (PPS) was used to measure the performance status of palliative care patients. Results: Among the 78 patients included in this study, the average age was 59 ± 16.6 years, 52.6% were males, 99% patients had an oncological diagnosis, and the median duration between two visits was 14 (Q1-Q3: (7.0, 21.0) days. The median PPS level was 60% (Q1-Q3: 50-70). Overall, ESAS scores decreased between the two visits (6.0 (2.8, 11.0), p < 0.001) with statistically significant improvement in pain (5.0 vs. 2.5, p < 0.001), loss of appetite (5.0 vs. 4.0, p = 0.004), depression (2.0 vs. 0.0, p < 0.001), and anxiety (1.5 vs. 0.0, p = 0.032). Based on symptoms at the initial visit, 3 clusters were present in our population. Cluster 1 included anxiety, depression, and wellbeing; cluster 2 included nausea, loss of appetite, tiredness, and shortness of breath; and cluster 3 included drowsiness. Conclusion: An outpatient palliative care visit significantly improved symptom burden in patients with a terminal diagnosis. Patients may benefit from further development of outpatient palliative care facilities to improve the quality of life in terminally ill patients.
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<a href="http://doi.org/10.1186/s12904-023-01195-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01195-4</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
2023 SE5 - Low Resource Setting
Ahmed IM
BMC Palliative Care
Female
Hashmi S
Humans
Infant
Jabeen I
Male
Neoplasms
Neoplasms/co [complications]
Neoplasms/ep [Epidemiology]
Neoplasms/th [therapy]
Outpatients
Pakistan
Palliative Care
Qamar U
Quality Of Life
Rafaqat W
Rajwani S
Referral And Consultation
Syed AR
Symptom Assessment
Syndrome
Tertiary Care Centers
Waqar MA
-
Dublin Core
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1136/bmjopen-2022-066620" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjopen-2022-066620</a>
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Doctors' experiences of referring and admitting patients to the intensive care unit: a qualitative study of doctors' practices at two tertiary hospitals in Malawi
Publisher
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BMJ Open
Date
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2023
Subject
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Humans; Critical Care; Tertiary Care Centers; Intensive Care Units; Intensive Care Units; Hospitalization; Malawi; Paediatric intensive & critical care; Adult intensive & critical care; Quality in health care
Creator
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Gundo R; Kayambankadzanja RK; Chipeta D; Gundo B; Chikumbanje SS; Baker T
Description
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OBJECTIVE: To explore doctors' experiences of referring and admitting patients to the intensive care unit (ICU) at two tertiary hospitals in Malawi. DESIGN: This was a qualitative study that used face-to-face interviews. The interviews were audiotaped and transcribed verbatim into English. The data were analysed manually through conventional content analysis. SETTING: Two public tertiary hospitals in the central and southern regions of Malawi. Interviews were conducted from January to June 2021. PARTICIPANTS: Sixteen doctors who were involved in the referral and admission of patients to the ICU. RESULTS: Four themes were identified namely, lack of clear admission criteria, ICU admission requires a complex chain of consultations, shortage of ICU resources, and lack of an ethical and legal framework for discontinuing treatment of critically ill patients who were too sick to benefit from ICU. CONCLUSION: Despite the acute disease burden and increased demand for ICU care, the two hospitals lack clear processes for referring and admitting patients to the ICU. Given the limited bed space in ICUs, hospitals in low-income countries, including Malawi, need to improve or develop admission criteria, severity scoring systems, ongoing professional development activities, and legislation for discontinuing intensive care treatments and end-of-life care.
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<a href="http://doi.org/10.1136/bmjopen-2022-066620" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2022-066620</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
2023 SE5 - Low Resource Setting
Adult intensive & critical care
Baker T
Bmj Open
Chikumbanje SS
Chipeta D
Critical Care
Gundo B
Gundo R
Hospitalization
Humans
Intensive Care Units
Kayambankadzanja RK
Malawi
Paediatric intensive & critical care
Quality In Health Care
Tertiary Care Centers
-
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1371/journal.pone.0288938" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1371/journal.pone.0288938</a>
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Title
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Doing our best and doing no harm: A focused ethnography of staff moral experiences of providing palliative care at a Médecins Sans Frontières pediatric hospital in Cox's Bazar, Bangladesh
Publisher
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PLoS One
Date
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2023
Subject
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Humans; Child; Hospitals Pediatric; Palliative Care; Infant; Bangladesh; Palliative Care; Morals; Hospitals Pediatric; Anthropology Cultural
Creator
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Yantzi R; Hadiuzzaman M; Sen Gupta PK; Lamrous A; Richardson K; Pringle J; Schwartz L; Hossain P; Kizito D; Burza S
Description
An account of the resource
INTRODUCTION: The Médecins Sans Frontières (MSF) Goyalmara Hospital in Cox's Bazar, Bangladesh is a referral centre offering the highest level of care available in the Rohingya camps for pediatrics and neonatology. Efforts are underway to integrate pediatric palliative care due to high mortality and medical complexity of patients, yet little is known about the experiences of staff delivering palliative and end-of-life care. The purpose of this study was to understand the moral experiences of MSF staff to inform program planning and implementation. METHODS: This focused ethnography was conducted between March-August 2021 at Goyalmara Hospital. Data collection involved participant-observation, individual interviews (22), focus group discussions (5), and analysis of documents including MSF clinical guidelines, admission and referral criteria, reports, and training materials. Data analysis followed a modified version of the Qualitative Analysis Guide of Leuven and data were coded using NVivo software. RESULTS: The prevailing understanding of pediatric palliative care among national and international staff was care that prioritized comfort for infants and children who were not expected to survive. Staff's views were informed by their sense of obligation to do no harm, to do their best on behalf of their patients, and religious beliefs about God's role in determining the child's outcome. The authority of doctors, international staff, as well as protocols and guidelines shaped palliative care decision-making. Staff saw clinical guidelines as valuable resources that supported a consistent approach to care over time, while others were concerned that palliative care guidelines were rigidly applied. CONCLUSION: When integrating palliative care into humanitarian programs, it is important to emphasize the active role of palliative care in reducing suffering. Advocacy for access to the highest level of care possible should continue alongside palliative care integration. While palliative care guidelines are valuable, it is essential to encourage open discussion of staff concerns and adapt care plans based on the family's needs and preferences.
Identifier
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<a href="http://doi.org/10.1371/journal.pone.0288938" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0288938</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
2023 SE5 - Low Resource Setting
Anthropology Cultural
Bangladesh
Burza S
Child
Hadiuzzaman M
Hospitals Pediatric
Hossain P
Humans
Infant
Kizito D
Lamrous A
Morals
Palliative Care
PLoS One
Pringle J
Richardson K
Schwartz L
Sen Gupta PK
Yantzi R
-
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2023 Special Edition 4 - Parent Perspectives List
Text
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Citation List Month
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1111/jocn.15368" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/jocn.15368</a>
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The views and experiences of fathers regarding their young child's intellectual and developmental disability diagnosis: Findings from a qualitative study.
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Journal of Clinical Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Humans; Child; Child, Preschool; Female; Male; Middle Aged; Adult; Qualitative Research; Attitude of Health Personnel; Developmental Disabilities/di [Diagnosis]; Intellectual Disability/di [Diagnosis]; *Fathers/px [Psychology]; *Intellectual Disability/px [Psychology]; *Developmental Disabilities/px [Psychology]
Creator
An entity primarily responsible for making the resource
Marsh, Lynne; Brown, Michael; McCann, Edward
Description
An account of the resource
AIMS AND OBJECTIVES: To report the views and experiences of fathers following their child's diagnosis of an intellectual and developmental disability (IDD)., BACKGROUND: There is a growing interest in understanding the experiences of fathers of children with IDD given the transformation of the structural change of fathers' roles within the family and wider society., DESIGN: A qualitative design was used to elicit the view and experiences of fathers., METHODS: A total of ten Irish fathers participated in face-to-face interviews. The data were thematically analysed. The COREQ guidelines for reporting qualitative studies were used in the development of this paper., RESULTS: The key themes that emerged were (a) the confirmation of the child's diagnosis (b) the impact of the diagnosis and (c) father's motivation to participate in disability research., CONCLUSIONS: This study informs and develops a further understanding of the international evidence base of fathers receiving a confirmation of a child's diagnosis of an intellectual and developmental disability, the impact of the diagnosis on fathers and their motivation to share their stories to add to the disability research. Health and social care practitioners have important contributions to make in meeting the needs of fathers. There are specific areas to consider in terms of practice, education and research that require further attention and development to ensure fathers' distinct needs regarding their child's diagnosis of IDD are known and responded to effectively., RELEVANCE TO CLINICAL PRACTICE: This study highlights that when the child's disability is confirmed, fathers experience a diverse range of mixed emotions. Health and social care practitioners including nurses need to be aware of the impact of the diagnosis upon fathers. There is scope to develop the knowledge, skills and confidence of health and social care practitioners regarding the experiences of fathers and how they can further support fathers and their families during the critical time of a disability disclosure. Copyright © 2020 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/jocn.15368" target="_blank" rel="noreferrer noopener">10.1111/jocn.15368</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).
*Developmental Disabilities/px [Psychology]
*Fathers/px [Psychology]
*Intellectual Disability/px [Psychology]
2020
2023 SE4 - Parent Perspectives
Adult
Attitude Of Health Personnel
Brown, Michael
Child
Child, Preschool
Developmental Disabilities/di [Diagnosis]
Female
Humans
Intellectual Disability/di [Diagnosis]
Journal of Clinical Nursing
Male
Marsh, Lynne
McCann, Edward
Middle Aged
Qualitative Research
-
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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2023 Special Edition 4 - Parent Perspectives 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
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1177/1359104517730115" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/1359104517730115</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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Fathers' experiences of their child's life-limiting condition: An attachment narrative perspective.
Publisher
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Clinical Child Psychology and Psychiatry
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Humans; Child; Female; Male; Adolescent; Middle Aged; Adult; Qualitative Research; *Object Attachment; *Fathers/px [Psychology]; *Chronic Disease/px [Psychology]; *Father-Child Relations
Creator
An entity primarily responsible for making the resource
Bailey-Pearce, Oliver; Stedmon, Jacqui; Dallos, Rudi; Davis, George
Description
An account of the resource
When a child has a life-limiting illness, parental involvement is amplified, having to respond to the increased needs of the child. Both parents are affected by the illness, yet research has largely under-represented fathers' experiences of their child's illness. Seven fathers were interviewed about their experiences with their child's life-limiting illness. In addition, fathers' attachment strategies were assessed using the Adult Attachment Interview. Narrative analysis was implemented to explore the interviews, and indicators of attachment markers employed in the Adult Attachment Interview were also identified. The dominant themes were found to be 'experience of the diagnosis', 'living with the illness', 'struggling with emotions' and 'relationship with staff'. Within each theme, there were differences which related to the father's attachment strategies. This was particularly evident in parts of their narratives recounting critical moments of threat and anxiety in the course of discovering and adjusting to their child's illness. Importantly, the findings also suggested that the experience for the fathers stressed, and in some cases disrupted, their attachment coping strategies. All fathers told stories of trying to get it right for their children and family. Their experiences of, and adjustment to, the illness were related to their attachment strategies. The clinical implications for health professionals are discussed.
Identifier
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<a href="http://doi.org/10.1177/1359104517730115" target="_blank" rel="noreferrer noopener">10.1177/1359104517730115</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).
*Chronic Disease/px [Psychology]
*Father-Child Relations
*Fathers/px [Psychology]
*Object Attachment
2018
2023 SE4 - Parent Perspectives
Adolescent
Adult
Bailey-Pearce, Oliver
Child
Clinical Child Psychology And Psychiatry
Dallos, Rudi
Davis, George
Female
Humans
Male
Middle Aged
Qualitative Research
Stedmon, Jacqui
-
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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2023 Special Edition 4 - Parent Perspectives 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
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1177/1744629518787606" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/1744629518787606</a>
Dublin Core
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Title
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We would have missed out so much had we terminated': What fathers of a child with Down syndrome think about current non-invasive prenatal testing for Down syndrome.
Publisher
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Journal of Intellectual Disabilities
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Humans; Child; Male; Adult; Qualitative Research; *Health Knowledge, Attitudes, Practice; *Choice Behavior; *Fathers; *Father-Child Relations; *Down Syndrome/di [Diagnosis]; *Noninvasive Prenatal Testing
Creator
An entity primarily responsible for making the resource
How, Bethea; Smidt, Andy; Wilson, Nathan J; Barton, Rebecca; Valentin, Chelsea
Description
An account of the resource
Non-invasive prenatal testing (NIPT) allows early, accurate diagnosis of Down syndrome that has resulted in increased terminations. This qualitative study involved in-depth interviews of fathers of children with Down syndrome about their views on the availability of NIPT. Thematic network analysis revealed that although fathers appreciated an early diagnosis with NIPT, they saw the test as being a predetermined pathway to termination. Fathers felt that expectation to terminate reflects negative societal attitudes towards those with Down syndrome and disability, fearing that NIPT may become a form of eugenics. Fathers retrospectively contrasted these attitudes with the actual reality of raising their children with Down syndrome, which they described as bringing joy to their lives. Findings suggest that although fathers valued NIPT as an information-giving tool that allowed autonomous parental choices about the pregnancy, they believe that it should be accompanied by balanced information about the reality of raising a child with Down syndrome.
Identifier
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<a href="http://doi.org/10.1177/1744629518787606" target="_blank" rel="noreferrer noopener">10.1177/1744629518787606</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).
*Choice Behavior
*Down Syndrome/di [Diagnosis]
*Father-Child Relations
*Fathers
*Health Knowledge, Attitudes, Practice
*Noninvasive Prenatal Testing
2019
2023 SE4 - Parent Perspectives
Adult
Barton, Rebecca
Child
How, Bethea
Humans
Journal of Intellectual Disabilities
Male
Qualitative Research
Smidt, Andy
Valentin, Chelsea
Wilson, Nathan J
-
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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2023 Special Edition 4 - Parent Perspectives 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
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1111/jar.12313" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/jar.12313</a>
Dublin Core
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Title
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Shutting the World Out': An Interpretative Phenomenological Analysis Exploring the Paternal Experience of Parenting a Young Adult with a Developmental Disability.
Publisher
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Journal of Applied Research in Intellectual Disabilities
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Humans; Male; Young Adult; Middle Aged; Adult; Qualitative Research; *Fathers/px [Psychology]; *Adult Children; *Developmental Disabilities; *Parenting/px [Psychology]
Creator
An entity primarily responsible for making the resource
Thackeray, Lisa A; Eatough, Virginia
Description
An account of the resource
BACKGROUND: An in-depth exploration of the experience of midlife fathers of developmentally disabled young adults (aged 19-32 years) was motivated by a dearth of research in this area (McKnight, PsyPAG Quarterly, 94, 2015, 10)., METHOD: Five fathers participated in semi-structured interviews which were subjected to interpretative phenomenological analysis (Smith, Flowers and Larkin, 2009, Interpretative Phenomenological Analysis: Theory, Method, and Research. London: Sage)., RESULTS: The final thematic structure comprises four inter-related themes. They demonstrate a high degree of concern for children's well-being; the joy adult children confers on their father's lives as well as the difficulties men experience in response to the limited opportunities available to their offspring. Importantly findings also illustrate the way in which men struggle to contend with painful emotions., CONCLUSIONS: Societal conceptions of masculinity, fatherhood and disability necessarily influence the way fathers experience the world (Yarwood, Fathering, 9, 2011, 150). It is imperative that service providers recognize the particular challenges faced by fathers, seeking ways to better engage and support them. Copyright © 2016 John Wiley & Sons Ltd.
Identifier
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<a href="http://doi.org/10.1111/jar.12313" target="_blank" rel="noreferrer noopener">10.1111/jar.12313</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).
*Adult Children
*Developmental Disabilities
*Fathers/px [Psychology]
*Parenting/px [Psychology]
2018
2023 SE4 - Parent Perspectives
Adult
Eatough, Virginia
Humans
Journal Of Applied Research In Intellectual Disabilities
Male
Middle Aged
Qualitative Research
Thackeray, Lisa A
Young Adult
-
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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2023 Special Edition 4 - Parent Perspectives 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
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1111/j.1365-2702.2010.03523.x" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/j.1365-2702.2010.03523.x</a>
Dublin Core
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Title
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Development and implementation of a bereavement follow-up intervention for grieving fathers: an action research.
Publisher
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Journal of Clinical Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Humans; Male; Health Services Research; Finland; Program Development; *Bereavement; *Fathers/px [Psychology]; *Social Support; Evidence-Based Nursing
Creator
An entity primarily responsible for making the resource
Aho, Anna L; Astedt-Kurki, Paivi; Tarkka, Marja-Terttu; Kaunonen, Marja
Description
An account of the resource
AIMS AND OBJECTIVES: The aim is to present the development and implementation of a bereavement follow-up intervention for grieving fathers. The development and implementation process and components of the intervention are presented., BACKGROUND: There is a lack of research into fathers' grief and bereavement support for them after the death of a child. Promotion of evidence-based nursing requires transparent development and implementation of nursing interventions and models to be able to repeat, evaluate their effectiveness and redevelop them., DESIGN: Phases of action research were used when developing and implementing the intervention., METHODS: Results of the baseline study of father's grief and social support, the study of current bereavement support and the literature review were combined using triangulation., RESULTS: In this action research, the development of a bereavement follow-up intervention for grieving fathers began with the planning phase that included a baseline study about fathers' grief and social support, a study of current bereavement support systems in Finnish university hospitals and a systematic review of literature on the topic area and collaboration with a panel of experts. The developed bereavement follow-up intervention included three complementary components: support package, peer supporters' contact and health care personnel's contact. Implementation of the intervention included the development of a programme to be used in nursing practice, intervention training for programme implementers and intervention implementation., CONCLUSIONS: Developing and implementing an intervention is a complex, demanding and long-term process. The planning required theoretical knowledge as well as understanding the experiences of fathers, nursing practice and collaboration with those who implemented the intervention., RELEVANCE TO CLINICAL PRACTICE: New information about the fathers' grief and bereavement follow-up support is described. The model developed is evidence-based and can be applied in nursing care where grieving fathers and families are met. Copyright © 2010 Blackwell Publishing Ltd.
Identifier
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<a href="http://doi.org/10.1111/j.1365-2702.2010.03523.x" target="_blank" rel="noreferrer noopener">10.1111/j.1365-2702.2010.03523.x</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).
*Bereavement
*Fathers/px [Psychology]
*Social Support
2011
2023 SE4 - Parent Perspectives
Aho, Anna L
Astedt-Kurki, Paivi
Evidence-Based Nursing
Finland
Health Services Research
Humans
Journal of Clinical Nursing
Kaunonen, Marja
Male
Program Development
Tarkka, Marja-Terttu
-
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
2023 Special Edition 4 - Parent Perspectives 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
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1111/jir.12093" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/jir.12093</a>
Dublin Core
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Title
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Openness and avoidance--a longitudinal study of fathers of children with intellectual disability.
Publisher
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Journal of Intellectual Disability Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Humans; Child, Preschool; Female; Male; Infant; Longitudinal Studies; Adult; Qualitative Research; *Fathers/px [Psychology]; *Father-Child Relations; *Intellectual Disability/px [Psychology]; *Parenting/px [Psychology]; *Developmental Disabilities/px [Psychology]
Creator
An entity primarily responsible for making the resource
Bostrom, P K; Broberg, M
Description
An account of the resource
BACKGROUND: Fathers' interactions with children who have intellectual disabilities (ID) or developmental delays (DD) have increased over the past few decades and may be expected to continue to increase as maternal and paternal roles, along with other gender roles, become more equal. The aim of the present study was to explore fathers' experiences of parenthood in relation to a child with ID/DD from the initial discovery of the disability to 5 years later., METHODS: Fathers' experiences of parenting children with ID/DD were explored in a longitudinal framework. Seven Swedish fathers of young children with ID/DD participated in a series of semi-structured interviews from 2005 to 2010, and their accounts were subjected to interpretative phenomenological analysis., RESULTS: The analysis revealed three themes: (1) An interrupted path - no longer taking things for granted, which describes the fathers' reactions to their children's diagnosis; (2) Being a good father, which describes the fathers' overall perceptions of their parenting of a child with ID/DD; and (3) Dealing with the unexpected, which describes fathers' individual ways of integrating, managing, and living with the knowledge of their child's disability over the 5 years during which fathers were interviewed., CONCLUSIONS: Fathers' individual paths need to be taken into consideration when offering psychological support to families of children with ID/DD. Copyright © 2013 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.
Identifier
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<a href="http://doi.org/10.1111/jir.12093" target="_blank" rel="noreferrer noopener">10.1111/jir.12093</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).
*Developmental Disabilities/px [Psychology]
*Father-Child Relations
*Fathers/px [Psychology]
*Intellectual Disability/px [Psychology]
*Parenting/px [Psychology]
2014
2023 SE4 - Parent Perspectives
Adult
Bostrom, P K
Broberg, M
Child, Preschool
Female
Humans
Infant
Journal Of Intellectual Disability Research
Longitudinal Studies
Male
Qualitative Research
-
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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2023 Special Edition 4 - Parent Perspectives 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
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1080/07347330903516902" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/07347330903516902</a>
Dublin Core
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Title
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Challenges and coping styles of fathers as primary medical caretakers: a multicultural qualitative study.
Publisher
An entity responsible for making the resource available
Journal of Psychosocial Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Humans; Male; United States; Neoplasms; Middle Aged; Adult; Qualitative Research; Socioeconomic Factors; Social Support; Anemia, Sickle Cell; *Adaptation, Psychological; *Caregivers/px [Psychology]; *Fathers/px [Psychology]; *Father-Child Relations/eh [Ethnology]; Ethnicity/px [Psychology]; Family Conflict
Creator
An entity primarily responsible for making the resource
Wolff, Joshua; Pak, Jenny; Meeske, Kathleen; Worden, J William; Katz, Ernest
Description
An account of the resource
Research has focused heavily on mother's experiences of children with life-threatening illnesses. In contrast, fathers' experiences, especially among minorities, are scarcely discussed. This study examined the experiences of 15 fathers as primary medical caretakers of children diagnosed with cancer or sickle cell disease. Using a life story method, fathers completed semistructured interviews regarding their overall experiences. Data was analyzed using narrative analysis with multiple case studies. Results indicated single, low socioeconomic status, and immigrant fathers with limited English proficiencies were at highest risk for coping difficulties. This study also examined gender biases that men experienced and masculine norms in coping.
Identifier
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<a href="http://doi.org/10.1080/07347330903516902" target="_blank" rel="noreferrer noopener">10.1080/07347330903516902</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).
*Adaptation, Psychological
*Caregivers/px [Psychology]
*Father-Child Relations/eh [Ethnology]
*Fathers/px [Psychology]
2010
2023 SE4 - Parent Perspectives
Adult
Anemia, Sickle Cell
Ethnicity/px [Psychology]
Family Conflict
Humans
Journal Of Psychosocial Oncology
Katz, Ernest
Male
Meeske, Kathleen
Middle Aged
Neoplasms
Pak, Jenny
Qualitative Research
Social Support
Socioeconomic Factors
United States
Wolff, Joshua
Worden, J William
-
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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2023 Special Edition 4 - Parent Perspectives 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
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1177/0269216309354396" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/0269216309354396</a>
Dublin Core
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Title
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Gender imbalance in pediatric palliative care research samples.
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Humans; Child; Child, Preschool; Female; Male; Adolescent; Infant; Sex Factors; Research Design; Sampling Studies; *Palliative Care/sn [Statistics & Numerical Data]; *Fathers/sn [Statistics & Numerical Data]; *Mothers/sn [Statistics & Numerical Data]; *Pediatrics/sn [Statistics & Numerical Data]; *Research/sn [Statistics & Numerical Data]
Creator
An entity primarily responsible for making the resource
Macdonald, Mary Ellen; Chilibeck, Gillian; Affleck, William; Cadell, Susan
Description
An account of the resource
We assessed the sampling performance of research on parental perspectives in pediatric palliative care and examined if and how gender imbalance was treated. We undertook a systematic review of parental perspectives research in pediatric palliative care using MEDLINE, CINAHL, and PsycINFO. Study selection inclusion criteria were: (1) published between 1988 and 2008; (2) in English; (3) conducted in North America; (4) focused on parents of children aged 0-18 years who were expected to die or had died; (5) had 'parent' in the title; and (6) focused on parents' experiences or on parents' perspectives regarding the child's illness/death. Keyword searches produced a list of 2103 studies, of which 45 met the criteria for inclusion. The ratio of mothers to fathers participating in the studies was examined. We found that there has been an increase in research on parental perspectives in pediatric palliative care over the last 5 years, but what constitutes 'parental' in this literature continues to be primarily 'maternal'. Mothers constituted 75% of the overall sample of parents. In only four studies was the gender imbalance addressed as one of the limitations of the study. There is a growing interest in parental perspectives in pediatric palliative care, but the research does not equally reflect the experiences and needs of mothers and fathers. Gender can shape experiences of both parenthood and grief; balanced gender sampling and accurate analysis is essential for research on 'parental perspectives'. Gender imbalance in research samples, designs, recruitment strategies, and data gathering methods must be addressed.
Identifier
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<a href="http://doi.org/10.1177/0269216309354396" target="_blank" rel="noreferrer noopener">10.1177/0269216309354396</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).
*Fathers/sn [Statistics & Numerical Data]
*Mothers/sn [Statistics & Numerical Data]
*Palliative Care/sn [Statistics & Numerical Data]
*Pediatrics/sn [Statistics & Numerical Data]
*Research/sn [Statistics & Numerical Data]
2010
2023 SE4 - Parent Perspectives
Adolescent
Affleck, William
Cadell, Susan
Child
Child, Preschool
Chilibeck, Gillian
Female
Humans
Infant
Macdonald, Mary Ellen
Male
Palliative Medicine
Research Design
Sampling Studies
Sex Factors
-
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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2023 Special Edition 4 - Parent Perspectives 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
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1542/peds.2007-1005" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1542/peds.2007-1005</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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Fathers' experiences in the neonatal intensive care unit: a search for control.
Publisher
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Pediatrics
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; Infant, Newborn; Critical Illness; Male; Professional-Family Relations; Communication; Qualitative Research; Interviews as Topic; Religion; Stress, Psychological; Infant, Premature; Father-Child Relations; *Intensive Care Units, Neonatal; *Fathers/px [Psychology]; Intensive Care Units, Neonatal/og [Organization & Administration]; *Internal-External Control
Creator
An entity primarily responsible for making the resource
Arockiasamy, Vincent; Holsti, Liisa; Albersheim, Susan
Description
An account of the resource
OBJECTIVE: This qualitative study aimed at understanding the experiences of fathers of very ill neonates in the NICU., METHODS: Sixteen fathers of very ill and/or very preterm infants who had been in the NICU for >30 days were interviewed by a male physician. Fathers were asked about their level of comfort with or concerns about staff communication regarding their infant, about accessing information, and about more general perceptions of their experience in the neonatal intensive care unit. Interviews were audiotaped and transcribed for analysis. Coding used content analysis with construction of themes by 3 researchers., RESULTS: The overarching theme for fathers was a sense of lack of control. Their world view, as a "backdrop" theme, provided context for all of the themes. Four other interrelated subthemes were identified, including information; communication, particularly with the health care team; fathers' various roles; and external activities. Fathers reported that relationships with friends/family/health care team, receiving information consistently, and receiving short written materials on common conditions were ways of giving them support. The fathers said that speaking to a male physician was a positive and useful experience., CONCLUSIONS: Fathers experience a sense of lack of control when they have an extremely ill infant in the NICU. Specific activities help fathers regain a sense of control and help them fulfill their various roles of protectors, fathers, partners, and breadwinners. Understanding these experiences helps the health care team offer targeted supports for fathers in the NICU.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2007-1005" target="_blank" rel="noreferrer noopener">10.1542/peds.2007-1005</a>
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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).
*Fathers/px [Psychology]
*Intensive Care Units, Neonatal
*Internal-External Control
2008
2023 SE4 - Parent Perspectives
Albersheim, Susan
Arockiasamy, Vincent
Communication
Critical Illness
Father-child Relations
Holsti, Liisa
Humans
Infant, Newborn
Infant, Premature
Intensive Care Units, Neonatal/og [Organization & Administration]
Interviews As Topic
Male
Pediatrics
Professional-family Relations
Qualitative Research
Religion
Stress, Psychological
-
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
2023 Special Edition 4 - Parent Perspectives 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
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1177/13674935030074001" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/13674935030074001</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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Differences and similarities between mothers' and fathers' experiences of parenting a child with a disability.
Publisher
An entity responsible for making the resource available
Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Humans; Child; Child, Preschool; Female; Male; Middle Aged; Parent-Child Relations; Communication; Adult; Qualitative Research; Gender Identity; Adaptation, Psychological; Focus Groups; Nursing Methodology Research; *Attitude to Health; *Disabled Children/px [Psychology]; Early Intervention, Educational; *Fathers/px [Psychology]; Stereotyping; Marriage/px [Psychology]; *Mothers/px [Psychology]; *Parenting/px [Psychology]; *Down Syndrome/px [Psychology]; Disabled Children/rh [Rehabilitation]; Down Syndrome/rh [Rehabilitation]
Creator
An entity primarily responsible for making the resource
Pelchat, Diane; Lefebvre, Helene; Perreault, Michel
Description
An account of the resource
This qualitative study used focus groups to identify the differences and similarities in the experiences of parents of children with a disability. Two main themes emerged, showing the ways in which the mothers and fathers are alike or different. One concerns roles, actual and expected, in the various subsystems of family life. The other concerns the normalization and stigmatization that arise because of the child's problem. Mothers tend to score better in terms of interpersonal and group communications. It would seem that the fathers' expectations are harder to fulfil than the mothers'. The fathers' expectations are attuned to the outer world; the actual day-to-day tasks related to the child's care are not their priority. The mothers are less demanding and their expectations are more self-focused. Interestingly, these families are similar to families of children without a disability; however, the difficulties they experience are accentuated by the presence of a child with a problem.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/13674935030074001" target="_blank" rel="noreferrer noopener">10.1177/13674935030074001</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).
*Attitude to Health
*Disabled Children/px [Psychology]
*Down Syndrome/px [Psychology]
*Fathers/px [Psychology]
*Mothers/px [Psychology]
*Parenting/px [Psychology]
2003
2023 SE4 - Parent Perspectives
Adaptation, Psychological
Adult
Child
Child, Preschool
Communication
Disabled Children/rh [Rehabilitation]
Down Syndrome/rh [Rehabilitation]
Early Intervention, Educational
Female
Focus Groups
Gender Identity
Humans
Journal Of Child Health Care
Lefebvre, Helene
Male
Marriage/px [Psychology]
Middle Aged
Nursing Methodology Research
Parent-child Relations
Pelchat, Diane
Perreault, Michel
Qualitative Research
Stereotyping
-
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
2023 Special Edition 4 - Parent Perspectives 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
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1111/jar.12563" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/jar.12563</a>
Dublin Core
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Title
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Being a dad to a child with Down's syndrome: Overcoming the challenges to adjustment.
Publisher
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Journal of Applied Research in Intellectual Disabilities
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Humans; Child; Child, Preschool; Male; Infant; Middle Aged; Adult; Qualitative Research; Grounded Theory; *Fathers/px [Psychology]; *Down Syndrome/nu [Nursing]
Creator
An entity primarily responsible for making the resource
Ridding, Anna; Williams, James
Description
An account of the resource
BACKGROUND: Historically, research exploring the impact of having a child with an Intellectual Disability (ID), has focussed exclusively on mothers. The present study aimed to investigate fathers' experiences of parenting a child with Down's syndrome (DS), their contributions, influences on family functioning and inclusion in their child's support provision., METHOD: Semi-structured interviews were conducted with 15 fathers. Interviews were analysed using Grounded Theory (GT)., RESULTS: Fathers' adjustment appeared to be on a fluid trajectory with three key categories influencing this: "Accommodating the Child," "Adapting the Parental/Spousal Role" and "Adapting Society.", CONCLUSIONS: The accounts uncovered fathers' adjustment trajectory to parenting a child with DS, concluding that despite practical and emotional challenges, fathers employed strategies to achieve positive adjustment. Fathers identified the need for services to recognize their role and involve them in their child's support provision. Implications for clinical practice and future research are discussed. Copyright © 2019 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.
Identifier
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<a href="http://doi.org/10.1111/jar.12563" target="_blank" rel="noreferrer noopener">10.1111/jar.12563</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).
*Down Syndrome/nu [Nursing]
*Fathers/px [Psychology]
2019
2023 SE4 - Parent Perspectives
Adult
Child
Child, Preschool
Grounded Theory
Humans
Infant
Journal Of Applied Research In Intellectual Disabilities
Male
Middle Aged
Qualitative Research
Ridding, Anna
Williams, James
-
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
2023 Special Edition 4 - Parent Perspectives 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
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1186/s12887-016-0631-9" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12887-016-0631-9</a>
Dublin Core
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Title
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Differences and similarities between mothers and fathers of premature children: a qualitative study of parents' coping experiences in a neonatal intensive care unit.
Publisher
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BMC Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Humans; Infant, Newborn; Female; Male; Middle Aged; Adult; Qualitative Research; *Parent-Child Relations; Social Support; Object Attachment; *Professional-Family Relations; *Adaptation, Psychological; *Intensive Care Units, Neonatal; *Fathers/px [Psychology]; *Mothers/px [Psychology]; Intensive Care, Neonatal/mt [Methods]; *Intensive Care, Neonatal/px [Psychology]; Intensive Care Units, Neonatal/og [Organization & Administration]; Intensive Care, Neonatal/og [Organization & Administration]
Creator
An entity primarily responsible for making the resource
Hagen, I H; Iversen, V C; Svindseth, M F
Description
An account of the resource
BACKGROUND: The aim of this study was to explore and describe the coping experiences of parents to children admitted to a neonatal unit., METHODS: A qualitative research approach was chosen, using in-depth interviews with eight fathers and eight mothers., RESULTS: The main findings were that parents with previous complicated births had more difficulties in coping compared to those parents with no experience with complications. Coping seemed easier where parents' opinions were heard regarding their baby's care and when both parents were present in the neonatal intensive care unit (NICU). The main similarities between mothers and fathers were the reluctance to speak their opinions on childcare, and both experienced a sense of alienation and problems in bonding with the baby. They also needed a limitation on the number of visitors in the NICU. Differences between mothers and fathers were that fathers tried hard to be the strong partner in the relationship, and were more concerned with the mother if she was seriously ill postpartum, while mothers were more concerned for their baby. Mothers' postpartum period was felt as more stressful if the father was not present, but mothers were also better at welcoming support from the health personnel., CONCLUSION: This study highlights the parent's coping experiences in NICUs. Coping seemed easier where parents' opinions were heard. Nurses in the NICU should take the former experiences of the parents into consideration when nursing in the NICU and planning for discharge.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12887-016-0631-9" target="_blank" rel="noreferrer noopener">10.1186/s12887-016-0631-9</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).
*Adaptation, Psychological
*Fathers/px [Psychology]
*Intensive Care Units, Neonatal
*Intensive Care, Neonatal/px [Psychology]
*Mothers/px [Psychology]
*Parent-Child Relations
*Professional-Family Relations
2016
2023 SE4 - Parent Perspectives
Adult
Bmc Pediatrics
Female
Hagen, I H
Humans
Infant, Newborn
Intensive Care Units, Neonatal/og [Organization & Administration]
Intensive Care, Neonatal/mt [Methods]
Intensive Care, Neonatal/og [Organization & Administration]
Iversen, V C
Male
Middle Aged
Object Attachment
Qualitative Research
Social Support
Svindseth, M F
-
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
2023 Special Edition 4 - Parent Perspectives 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
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1007/s10912-015-9359-z" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s10912-015-9359-z</a>
Dublin Core
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Title
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Losing Thomas & Ella: A Father's Story (A Research Comic).
Publisher
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Journal of Medical Humanities
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Humans; Male; Qualitative Research; Narration; *Graphic Novels as Topic; *Perinatal Death; *Stillbirth; Death; *Fathers/px [Psychology]; *Grief
Creator
An entity primarily responsible for making the resource
Weaver-Hightower, Marcus B
Description
An account of the resource
"Losing Thomas & Ella" presents a research comic about one father's perinatal loss of twins. The comic recounts Paul's experience of the hospital and the babies' deaths, and it details the complex grieving process afterward, including themes of anger, distance, relationship stress, self-blame, religious challenges, and resignation. A methodological appendix explains the process of constructing the comic and provides a rationale for the use of comics-based research for illness, death, and grief among practitioners, policy makers, and the bereaved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s10912-015-9359-z" target="_blank" rel="noreferrer noopener">10.1007/s10912-015-9359-z</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).
*Fathers/px [Psychology]
*Graphic Novels as Topic
*Grief
*Perinatal Death
*Stillbirth
2017
2023 SE4 - Parent Perspectives
Death
Humans
Journal Of Medical Humanities
Male
Narration
Qualitative Research
Weaver-Hightower, Marcus B
-
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
2023 Special Edition 4 - Parent Perspectives 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
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1080/15524256.2019.1703877" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/15524256.2019.1703877</a>
Dublin Core
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Title
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Engaging Fathers in Pediatric Palliative Care Research
Publisher
An entity responsible for making the resource available
Journal Of Social Work In End-Of-Life and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Humans; Child; child; Male; pediatrics; Professional-Family Relations; controlled study; male; Adult; child health; perception; palliative therapy; Adaptation, Psychological; Caregiver; *Palliative Care/px [Psychology]; interview; health care personnel; wellbeing; qualitative research; father; *Fathers/px [Psychology]; *Father-Child Relations; Paternal caregivers; research engagement; sample recruitment challenges; *Paternal Behavior/px [Psychology]
Creator
An entity primarily responsible for making the resource
Nicholas, D.; Beaune, L.; Belletrutti, M.; Blumberg, J.; Ing, S.; Rapoport, A.; Barrera, M.
Description
An account of the resource
Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A secondary mixed-methods evaluation design guided examination of interview and focus group data as well as field notes from a qualitative study that examined the experiences and support needs of fathers of children with a life-limiting illness. Facilitators of paternal participation in the study consisted of: fathers' desire to gain from study participation either for themselves or others, perception of the study's importance, sense of appreciation for the study's focus on fathers and an established relationship with recruiting health care providers. Barriers to study participation included: recruiting health care providers' appraisal of fathers' lack of well-being, bereaved fathers' self-reported poor coping and the inability to locate and contact fathers, particularly after a child's death. Strategies for improving the engagement of fathers into research entailed: educating recruitment personnel, designing "father-focused" studies, communicating the value of the research to recruitment personnel and potential participants, and ensuring that child health records are accurate and include fathers' contact information.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/15524256.2019.1703877" target="_blank" rel="noreferrer noopener">10.1080/15524256.2019.1703877</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).
*Father-Child Relations
*Fathers/px [Psychology]
*Palliative Care/px [Psychology]
*Paternal Behavior/px [Psychology]
2020
2023 SE4 - Parent Perspectives
Adaptation, Psychological
Adult
Barrera, M.
Beaune, L.
Belletrutti, M.
Blumberg, J.
Caregiver
Child
Child Health
Controlled Study
Father
Health Care Personnel
Humans
Ing, S.
Interview
Journal of social work in end-of-life and palliative care
Male
Nicholas, D.
Palliative Therapy
Paternal caregivers
Pediatrics
Perception
Professional-family Relations
Qualitative Research
Rapoport, A.
research engagement
sample recruitment challenges
Wellbeing
-
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
2023 Special Edition 4 - Parent Perspectives 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
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1177/0269216320979153" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/0269216320979153</a>
Dublin Core
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Title
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A meta-ethnographic study of fathers' experiences of caring for a child with a life-limiting illness
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
2020
Subject
The topic of the resource
Humans; Child; children; Male; Palliative care; Qualitative Research; *Parents; Anthropology, Cultural; fathers; healthcare; life-limiting; meta-ethnography; *Fathers
Creator
An entity primarily responsible for making the resource
Postavaru, G. I.; Swaby, H.; Swaby, R.
Description
An account of the resource
BACKGROUND: There is a growing body of qualitative studies examining parents' experiences of caring for a child with a life-limiting condition, coinciding with recent evidence that indicates an increasing incidence of paediatric life-limiting conditions. However, research focusing on fathers' needs remains sparse and is often diluted among a predominant 'mother's voice', raising questions about whether practices in clinical settings meet fathers' needs. AIM: To provide an in-depth assembly of the current state of knowledge around fathers' experiences of caring for their children diagnosed with life-limiting conditions and understand the implications for healthcare services and policies. DESIGN: A meta-ethnography was conducted to synthesise findings from existing qualitative studies exploring fathers' experiences of caring. DATA SOURCES: Four electronic databases (PubMed, PsycINFO, CINAHL and Science Direct) were searched up until April 2020. Qualitative studies exploring fathers' care experience and published in English language were included. The Critical Appraisal Skills Programme (CASP) checklist was employed for study quality appraisal. No temporal limits were used. RESULTS: Sixty-three studies met the inclusion criteria. Thirty life-limiting conditions were included. Based on responses from 496 fathers, a conceptual model was developed which translates key experiences within the fathers' caregiving journeys. The overarching concepts identified were: the paradox of support, challenges in the caring process, 'nobody thinks of men', impact on family life and the fall of the curtain: an irrevocably altered world. These and associated sub-concepts are discussed, with recommendations for future research and practice provided. CONCLUSION: The findings indicate the value of a family-oriented approach to develop psychosocial interventions and support channels for fathers, thus empowering them whilst reducing the care-giving burden on the family unit.
Identifier
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<a href="http://doi.org/10.1177/0269216320979153" target="_blank" rel="noreferrer noopener">10.1177/0269216320979153</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).
*Fathers
*Parents
2020
2023 SE4 - Parent Perspectives
Anthropology, Cultural
Child
Children
Fathers
healthcare
Humans
Life-limiting
Male
meta-ethnography
Palliative Care
Palliative Medicine
Postavaru, G. I.
Qualitative Research
Swaby, H.
Swaby, R.
-
Dublin Core
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Title
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2023 Special Edition 4 - Parent Perspectives 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
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1111/jar.12804" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/jar.12804</a>
Dublin Core
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Title
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"They just get it" an exploration of father's experiences and perceptions of a support group for men caring for children with disabilities and/or developmental delay
Publisher
An entity responsible for making the resource available
Journal of Applied Research in Intellectual Disabilities
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Humans; Child; Female; Male; Qualitative Research; Perception; Fathers; Self-Help Groups; *Intellectual Disability; *Disabled Children
Creator
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Batchelor, Molly; Maguire, Sabine; Shearn, Julia
Description
An account of the resource
BACKGROUND: Support groups available to parents/carers of children with a disability or developmental delay (DDD) are predominately attended by women. Limited data exists reporting experiences of the few male-only support groups. This paper examines experiences of fathers of children with DDD attending a male-only support group from South Wales., METHOD: All fifteen members from a support group for fathers/male carers of children with DDD were invited to take part in qualitative interviews and seven participated. The data were analysed following Braun and Clarke's (Qualitative research in psychology, 2006, 3:77) thematic framework., RESULTS: Within the group, fathers felt understood by similarly situated men, and a sense of connectivity and belonging. Fathers perceived exclusion elsewhere, including mixed-gender groups. Fathers felt permission to talk in a way consistent with their male identities, and valued receiving, and giving, support., CONCLUSIONS: Mixed-gender support groups may not meet the needs of fathers, and there are potential benefits in providing male-only groups. Copyright � 2020 John Wiley & Sons Ltd.
Identifier
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<a href="http://doi.org/10.1111/jar.12804" target="_blank" rel="noreferrer noopener">10.1111/jar.12804</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).
*Disabled Children
*Intellectual Disability
2021
2023 SE4 - Parent Perspectives
Batchelor, Molly
Child
Fathers
Female
Humans
Journal Of Applied Research In Intellectual Disabilities
Maguire, Sabine
Male
Perception
Qualitative Research
Self-Help Groups
Shearn, Julia
-
Dublin Core
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Title
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2023 Special Edition 4 - Parent Perspectives 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
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2021-003019" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjspcare-2021-003019</a>
Dublin Core
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Title
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Experiences of fathers of children with a life-limiting condition: a systematic review and qualitative synthesis
Publisher
An entity responsible for making the resource available
BMJ Supportive and Palliative Care
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; Female; Male; Qualitative Research; Emotions; *Neoplasms; Parents/px [Psychology]; Mothers/px [Psychology]; *Fathers; Fathers/px [Psychology]
Creator
An entity primarily responsible for making the resource
Fisher, Victoria; Fraser, Lorna; Taylor, Johanna
Description
An account of the resource
BACKGROUND: Children with a life-limiting condition often require extensive and complex care, much of which is provided by their parents at home. There is a growing body of research that aims to understand the experiences of these parents, but the majority of this research is from mothers' perspectives, meaning that fathers' experiences are not well understood., OBJECTIVES: To identify and synthesise findings from existing qualitative studies that have explored the experiences of fathers of children with a life-limiting condition., METHODS: A systematic review of qualitative research was conducted using thematic synthesis. Searches were conducted in MEDLINE, CINAHL, EMBASE, PsycINFO and Social Science Citation Index., RESULTS: Findings from 30 studies were included, representing the experiences of 576 fathers of children with a range of diagnoses including cancer, cystic fibrosis, genetic and neurological conditions. Themes detailed fathers' experiences of uncertainty and shock around the time of their child's diagnosis, their accounts of a 'new normal', difficulties in discussing their emotions, forming relationships with and seeking support from professionals and working fathers' role conflicts. They discussed the life-changing nature of their child's diagnosis, an event that affected all aspects of their lives from everyday activities, to their relationships, spirituality, values and ambitions., CONCLUSIONS: Fathers experience many difficulties in response to their child's diagnosis and ongoing treatment. Findings highlight the need for healthcare professionals to recognise individual family dynamics and the evolving role of the father. Fathers' responses are not widely understood, and research that directly addresses their own well-being is warranted. Copyright � Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY. Published by BMJ.
Identifier
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<a href="http://doi.org/10.1136/bmjspcare-2021-003019" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2021-003019</a>
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*Fathers
*Neoplasms
2023
2023 SE4 - Parent Perspectives
BMJ Supportive and Palliative Care
Child
Emotions
Fathers/px [Psychology]
Female
Fisher, Victoria
Fraser, Lorna
Humans
Male
Mothers/px [Psychology]
Parents/px [psychology]
Qualitative Research
Taylor, Johanna
-
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.30115" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.30115</a>
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The impact of clinical trial enrollment on specialty palliative care utilization in pediatric patients with high-grade gliomas
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Pediatric Blood and Cancer
Date
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2023
Subject
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Humans; Child; palliative care; Palliative Care; Disease Progression; Palliative Care; Clinical Trials as Topic; clinical trial; Glioma; Glioma/therapy/pathology; high-grade glioma; pediatric brain tumor
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Roberts HJ; Wang Y; Spruit JL; Taylor L; Franson AT
Description
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BACKGROUND: Palliative care (PC) provides numerous benefits for children with cancer. Pediatric patients with high-grade glioma (HGG) are particularly well suited for early PC involvement given their high symptom burden and poor prognosis. However, studies continue to reveal that children with cancer, including HGG, have delayed PC involvement. We hypothesized that clinical trial enrollment may lead to a lack of or delay in PC involvement in this population. PROCEDURE: For each patient in our cohort of 43 pediatric patients with HGG, demographic, diagnostic, therapeutic, clinical trial enrollment, and PC information were collected. Statistical analysis was performed comparing PC characteristics between patients who did and did not enroll in a clinical trial. RESULTS: Seventy-two percent of patients had at least one visit with a PC provider. Fifty-six percent of patients enrolled in a clinical trial with HGG-directed therapy. Seventy-one percent of patients who enrolled in a clinical trial received specialty PC compared to 74% of non-trial participants (p = 1.000). Patients who enrolled in clinical trials received PC earlier in their disease course measured in days before death (mean = 177 days) compared to those who did not enroll (mean = 113 days, p = .180), though not statistically significant. CONCLUSIONS: The prevalence of clinical trial enrollment is high in patients with HGG and will likely increase as the genomic/epigenomic landscape of these tumors is better understood. As such, our data reassuringly suggest that trial participation does not interfere with the receipt of specialty PC in this population.
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<a href="http://doi.org/10.1002/pbc.30115" target="_blank" rel="noreferrer noopener">10.1002/pbc.30115</a>
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2023
2023 SE3 - Oncology
Child
Clinical Trial
Clinical Trials as Topic
Disease Progression
Franson AT
Glioma
Glioma/therapy/pathology
high-grade glioma
Humans
Palliative Care
Pediatric Blood and Cancer
Pediatric Brain Tumor
Roberts HJ
Spruit JL
Taylor L
Wang Y
-
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Title
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.30081" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.30081</a>
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Differences in palliative opportunities across diagnosis groups in children with cancer.
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Pediatric Blood and Cancer
Date
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2023
Subject
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Humans; Infant Newborn; Child; Child Preschool; Palliative Care; Retrospective Studies; Adolescent; Infant; Quality of Life; Recurrence; Only Child; Terminal Care/psychology; Neoplasms/therapy; Leukemia; Clinical Trials Phase I as Topic; Lymphoma
Creator
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Ebelhar J; DeGroote NP; Massie AM; Labudde E; Allen KE; Castellino SM; Wasilewski-Masker K; Brock KE
Description
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BACKGROUND: Childhood cancer causes significant physical and emotional stress. Patients and families benefit from palliative care (PC) to reduce symptom burden, improve quality of life, and enhance family-centered care. We evaluated palliative opportunities across leukemia/lymphoma (LL), solid tumors (ST), and central nervous system (CNS) tumor groups. PROCEDURE: A priori, nine palliative opportunities were defined: disease progression/relapse, hematopoietic stem cell transplant, phase 1 trial enrollment, admission for severe symptoms, social concerns or end-of-life (EOL) care, intensive care admission, do-not-resuscitate (DNR) status, and hospice enrollment. A single-center retrospective review was completed on 0-18-year olds with cancer who died from January 1, 2012 to November 30, 2017. Demographic, disease, and treatment data were collected. Descriptive statistics were performed. Opportunities were evaluated from diagnosis to death and across disease groups. RESULTS: Included patients (n = 296) had LL (n = 87), ST (n = 114), or CNS tumors (n = 95). Palliative opportunities were more frequent in patients with ST (median 8) and CNS tumors (median 7) versus LL (median 5, p = .0005). While patients with ST had more progression/relapse opportunities (p < .0001), patients with CNS tumors had more EOL opportunities (p < .0001), earlier PC consultation, DNR status, and hospice enrollment. Palliative opportunities increased toward the EOL in all diseases (p < .0001). PC was consulted in 108 (36%) patients: LL (48%), ST (30%), and CNS (34%, p = .02). CONCLUSIONS: All children with cancer incur many events warranting PC support. Patients with ST and CNS tumors had more palliative opportunities than LL, yet received less subspecialty PC. Understanding palliative opportunities within each disease group can guide PC utilization to ease patient and family stress.
Identifier
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<a href="http://doi.org/10.1002/pbc.30081" target="_blank" rel="noreferrer noopener">10.1002/pbc.30081</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
2023 SE3 - Oncology
Adolescent
Allen KE
Brock KE
Castellino SM
Child
Child Preschool
Clinical Trials Phase I as Topic
DeGroote NP
Ebelhar J
Humans
Infant
Infant Newborn
Labudde E
Leukemia
Lymphoma
Massie AM
Neoplasms/therapy
Only Child
Palliative Care
Pediatric Blood and Cancer
Quality Of Life
Recurrence
Retrospective Studies
Terminal Care/psychology
Wasilewski-Masker K
-
Dublin Core
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Title
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1016/j.pedn.2022.12.004" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.pedn.2022.12.004</a>
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Experiences with the end-of-life decision-making process in children with cancer, their parents, and healthcare professionals: A systematic review and meta-ethnography
Publisher
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Journal of Pediatric Nursing
Date
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2023
Subject
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Humans; Child; Delivery of Health Care; Decision Making; Pediatric; Qualitative Research; Decision-making; Cancer; Anthropology Cultural; Only Child; Death; End-of-life; Neoplasms/therapy; Parents/psychology; Meta-ethnography
Creator
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Hirata M; Kobayashi K
Description
An account of the resource
BACKGROUND: Decision-making during the end-of-life (EOL) phase for children with cancer is extremely difficult for parents. We synthesized the qualitative experiences of children with cancer, parents, and healthcare professionals (HCPs), and their social interactions during the EOL decision-making process in the pediatric oncology setting. METHODS: Meta-ethnography was used to conduct a systematic review and meta-synthesis. We searched four online databases to identify original studies published in English and Japanese and examined 21 relevant studies. Two Japanese reviewers discussed the differences/relationships and included studies that synthesized the translated qualitative findings. A conceptual model of social interactions was created. RESULTS: We identified four themes regarding children's, parents', and HCPs' experiences: hope and confrontation with the child's death, guidance and support during uncertainty, awareness of being protected and having hope, and mutual unspoken integration of values. CONCLUSIONS: These themes evince the experiences of children, parents, and HCPs during the EOL decision-making process and suggests a complex three-way social interaction model. While considering such distinctive social interactions during a child's EOL, this study revealed the sharing of prudent information and psychosocial support by HCPs. The findings indicate that hope and uncertainty are key elements for effectively understanding the experiences of children and parents and that EOL decision-making should not be rushed but should be supported by leaving room for uncertainty and acknowledging parents' emotional needs and fostering new hope. Further research into how hope can be further supported in situations that are rife with uncertainty is needed.
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<a href="http://doi.org/10.1016/j.pedn.2022.12.004" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2022.12.004</a>
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2023
2023 SE3 - Oncology
Anthropology Cultural
Cancer
Child
Death
Decision Making
Decision-making
Delivery of Health Care
end-of-life
Hirata M
Humans
Journal of Pediatric Nursing
Kobayashi K
meta-ethnography
Neoplasms/therapy
Only Child
Parents/psychology
Pediatric
Qualitative Research
-
Dublin Core
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Title
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2023 Special Edition 3 - Oncology 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1177/02692163231165100" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163231165100</a>
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Title
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Existential experiences and perceptions of death among children with terminal cancer: An interpretative qualitative study
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Humans; Parents; Child; Palliative Care; Quality of Life; Qualitative Research; Neoplasms; Only Child; Terminal Care; Death
Creator
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Lin N; Lv D; Hu Y; Zhu J; Xu H; Lai D
Description
An account of the resource
BACKGROUND: Exploring the experience and understanding of death in children with terminal cancer is important to provide them with appropriate care. However, most studies have focused on the perspectives of parents and healthcare professionals, and few have focused on the end-of-life experiences of children., AIM: To advance the understanding of end-of-life experiences and perceptions of death in children with cancer., DESIGN: Interpretative qualitative study using semi-structured interviews. Data were analyzed using reflexive thematic analysis., SETTING/PARTICIPANTS: The study was conducted at the department of oncological surgery, Children's Hospital, Zhejiang University School of Medicine. Ten children aged 8-17 with terminal cancer were included in the study., RESULTS: Four major themes (and eight sub-themes) were identified from the findings: (1) helplessness in the face of death (loneliness, loss of control); (2) desire to connect with the world they left (reluctantly to be forgotten, sense of self-worth); (3) perceptions and attitudes toward death (separating from loved ones, embracing death); (4) expectations of future life (promoting comfort, fulfilling wishes)., CONCLUSIONS: Children with terminal cancer have a strong sense of loneliness and a desire to connect with the world they have left behind. Differences in children's perceptions and attitudes about death suggest that healthcare professionals should focus on their experiences and needs and provide personalized palliative care services to children and their families to improve their quality of life.
Identifier
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<a href="http://doi.org/10.1177/02692163231165100" target="_blank" rel="noreferrer noopener">10.1177/02692163231165100</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
2023 SE3 - Oncology
Child
Death
Hu Y
Humans
Lai D
Lin N
Lv D
Neoplasms
Only Child
Palliative Care
Palliative Medicine
Parents
Qualitative Research
Quality Of Life
Terminal Care
Xu H
Zhu J
-
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Title
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October 2023 List
Text
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Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.1136/medhum-2022-012507" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/medhum-2022-012507</a>
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Metaphors and decision making in parental blogs about their children with life-limiting diseases: who's afraid of the war metaphor?
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Med Humanit
Date
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2023
Subject
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Humans; Child; Decision Making; child health; War; linguistics; Blogging; Metaphor; metaphor; Metaphor; patient narratives
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Neefjes V
Description
An account of the resource
The use of metaphors aids understanding by allowing us to think of complex problems in terms of relatively simple and more concrete information. As such, metaphors shape thought and guide future action. While metaphors are known to play a role in medical treatment decision-making, the effect of particular metaphors is unknown.This paper explores the metaphors West-European parents use for their child suffering from a life-limiting condition by analysing 15 blogs from Dutch, German and English and Welsh parents. The analysis found that all parents use war metaphors to describe their child and their disease. Describing their child in war metaphors, for example, 'fighter', 'hero' or 'trooper' allows parents to express their pride in their child. To describe the familial situation parents use both 'life as a fight' and a 'time as space' metaphor. Time is conceptualised as a space to be filled with positive experiences to allow the child to live as full a life as possible. In medical treatment decisions, parents balance 'fighting the disease' against their child's ability to live a good life. No evidence was found that the use of war metaphors increase a tendency to treat when benefit is unlikely. Instead, parents primarily use war metaphors as a conduit to express their love for their child and to empower them to manage the familial situation.
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<a href="http://doi.org/10.1136/medhum-2022-012507" target="_blank" rel="noreferrer noopener">10.1136/medhum-2022-012507</a>
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2023
Blogging
Child
Child Health
Decision Making
Humans
Linguistics
Med Humanit
Metaphor
Neefjes V
October List 2044
patient narratives
War
-
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October 2023 List
Text
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Citation List Month
October List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.10.015" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.10.015</a>
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End of Life in Pediatrics: The "Relief" of Poetry on Pain by Reaching Children's Spirituality
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Journal of Pain and Symptom Management
Date
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2023
Subject
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Pain; Humans; Child; Palliative Care; Pediatrics; Spirituality; Poetry; Only Child; Death; Humanities; Pediatrics; Spiritual Therapies
Creator
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Calandrino A
Description
An account of the resource
This article provides a brief overview on the role of poetry into the pediatric palliative and end-of-life care setting. Starting from examples, the author deepens possible applications to the world of children and offers a poem, from his direct experience, which deals with the cited thematic.
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.10.015" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.10.015</a>
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2023
Calandrino A
Child
Death
Humanities
Humans
J Pain Symptom Manage
October List 2023
Only Child
Pain
Palliative Care
Pediatrics
Poetry
Spiritual therapies
Spirituality
-
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Title
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September 2023 List
Text
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Citation List Month
September List 2023
URL Address
<a href="http://doi.org/10.1590/0034-7167-2022-0476" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1590/0034-7167-2022-0476</a>
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Title
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Searching for human connection to transcend symbolisms in pediatric palliative care
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Revista Brasileira de Enfermagem
Date
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2023
Subject
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Humans; Child; Palliative Care; Adolescent; Qualitative Research; Health Personnel; Symbolism; Humanism; Palliative Care/methods; Humanities; Empathy
Creator
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Moreira-Dias PL; Franco LF; Bonelli MA; Ferreira EAL; Wernet M
Description
An account of the resource
OBJECTIVES: to present a theoretical model for the interactional context of health professionals and families of children and adolescents under palliative care. METHODS: qualitative study based on the theoretical frameworks of Grounded Theory and Symbolic Interactionism. Ten palliative care professionals took part in this study through semi-structured interviews employing snowball technique from 2020 to 2021. RESULTS: the comparative data analysis resulted in the theoretical model "Searching for human connection to transcend symbolisms in pediatric palliative care". It reveals symbolic elements that substantiate the construction of a collaborative context integrating two phenomena: "Overcoming boundaries and intertwining paths" and "Embracing suffering to weave meaningful experiences". Symbolisms in palliative care guide the behavior of families and professionals, which makes them the key factor to be managed. FINAL CONSIDERATIONS: symbolisms and suffering continually integrate the interactional experience of professionals. Empathy and compassion are fundamental elements to enable their connection with families.
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<a href="http://doi.org/10.1590/0034-7167-2022-0476" target="_blank" rel="noreferrer noopener">10.1590/0034-7167-2022-0476</a>
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2023
Adolescent
Bonelli MA
Child
Empathy
Ferreira EAL
Franco LF
Health Personnel
Humanism
Humanities
Humans
Moreira-Dias PL
Palliative Care
Palliative Care/methods
Qualitative Research
Revista Brasileira de Enfermagem
September List 2046
Symbolism
Wernet M
-
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September 2023 List
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Citation List Month
September List 2023
URL Address
<a href="http://doi.org/10.1136/jme-2022-108448" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/jme-2022-108448</a>
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The age limit for euthanasia requests in the Netherlands: a Delphi study among paediatric experts
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Journal of Medical Ethics
Date
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2023
Subject
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Humans; Child; Consensus; Netherlands; Delphi Technique; Minors; Euthanasia
Creator
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de Keijzer SC; Widdershoven G; Verhagen AAE; Pasman HR
Description
An account of the resource
Background The Dutch Euthanasia Act applies to patients 12 years and older, which makes euthanasia for minors younger than 12 legally impossible. The issue under discussion specifically regards the capacity of minors to request euthanasia. Objective Gain insight in paediatric experts’ views about which criteria are important to assess capacity, from what age minors can meet those criteria, what an assessment procedure should look like and what role parents should have. Methods A Delphi study with 16 experts (paediatricians, paediatric nurses and paediatric psychologists) who work in Children Comfort Teams in Dutch academic hospitals. The questionnaire contained statements concerning criteria for capacity and procedural criteria. Consensus was defined as ≥80% agreement. Results The experts agreed that five criteria for capacity, found in a previous literature study, are all important. They agreed that some children between ages 9 and 11 could meet all the criteria. Consensus was reached for the statements that the entire medical team should be involved in the decision making and that a second independent expert must assess the case. Experts agreed that the parents’ opinion is relevant and should always be taken into account, but it need not be decisive. Conclusion This study shows that the age limit of 12 years in the Dutch Euthanasia Act is too strong according to paediatric experts. Letting go of the age limit or lowering the age limit combined with adequate capacity assessment for minors younger than 12 are options that should be discussed further.
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<a href="http://doi.org/10.1136/jme-2022-108448" target="_blank" rel="noreferrer noopener">10.1136/jme-2022-108448</a>
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2023
Child
Consensus
de Keijzer SC
Delphi Technique
Euthanasia
Humans
Journal of Medical Ethics
Minors
Netherlands
Pasman HR
September List 2032
Verhagen AAE
Widdershoven G
-
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Title
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September 2023 List
Text
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Citation List Month
September List 2023
URL Address
<a href="http://doi.org/10.1186/s12904-023-01206-4" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01206-4</a>
Dublin Core
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Title
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The dignity of terminally ill children in pediatric palliative care: perspectives of parents and healthcare providers
Publisher
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BMC Palliative Care
Date
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2023
Subject
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Humans; Parents; Child; Palliative Care; Adult; Qualitative Research; Health Personnel; Palliative Care; Terminally Ill; Terminally Ill; Terminally ill children; Dignity; Mainland China; Pediatric Palliative care; Respect
Creator
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Cai S; Guo Q; Lin J; Deng C; Li H; Zhou X
Description
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BACKGROUND: The Chochinov Dignity Model was developed based on a cohort of adult patients with advanced cancer, but its role among dying children is not clear. This study aims to develop a model of dignity for children receiving pediatric palliative care based on the Chochinov Dignity Model. METHODS: This is a descriptive qualitative study. Participants included a total of 11 parents and 14 healthcare providers who were recruited from a tertiary children's hospital in Beijing and the Pediatric Palliative Care Subspecialty Group of the Pediatrics Society of the Chinese Medical Association using purposive sampling. Thematic framework analysis was used to analyze data. RESULTS: The themes of the empirical Dignity Model were broadly supported in this study, but some themes were interpreted differently in the child population. Compared with the original model, some child-specific themes were identified including acknowledging regret, a sense of security, the company of important loved ones, realizing unfinished wishes, decent and dignified death, resolving family disputes, and fairness. CONCLUSIONS: This is the first study on Dignity Model for terminal children. Knowledge of children's dignity can promote reflection of healthcare providers and caregivers regarding the values underlying their performance in pediatric palliative care, and develop certain practical interventions to strengthen children and their families' sense of dignity at end of life.
Identifier
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<a href="http://doi.org/10.1186/s12904-023-01206-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01206-4</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).
2023
Adult
BMC Palliative Care
Cai S
Child
Deng C
Dignity
Guo Q
Health Personnel
Humans
Li H
Lin J
Mainland China
Palliative Care
Parents
Pediatric Palliative Care
Qualitative Research
Respect
September List 2028
Terminally Ill
Terminally Ill Children
Zhou X