1
40
34
-
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Title
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July 2023 List
Text
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July List 2023
URL Address
<a href="http://doi.org/10.1007/s40271-023-00627-w" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s40271-023-00627-w</a>
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Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members
Publisher
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The Patient
Date
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2023
Subject
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communication; family; Patient Participation; preference for care; qualitative; self report; siblings
Creator
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Coombes L; Harðardóttir D; Braybrook D; Roach A; Scott H; Bristowe K; Ellis-Smith C; Downing J; Bluebond-Langner M; Fraser LK; Murtagh FEM; Harding R
Description
An account of the resource
BACKGROUND: Self-reported health data from children with life-limiting conditions is rarely collected. To improve acceptability and feasibility of child and family-centred outcome measures for children, they need to be designed in a way that reflects preferences, priorities and abilities. OBJECTIVES: The aim was to identify preferences for patient-reported outcome measure design (recall period, response format, length, administration mode) to improve the feasibility, acceptability, comprehensibility and relevance of a child and family-centred outcome measure, among children with life-limiting conditions and their family members. METHOD: A semi-structured qualitative interview study seeking the perspectives of children with life-limiting conditions, their siblings and parents on measure design was conducted. Participants were purposively sampled and recruited from nine UK sites. Verbatim transcripts were analysed using framework analysis. RESULTS: A total of 79 participants were recruited: 39 children aged 5-17 years (26 living with a life-limiting condition; 13 healthy siblings) and 40 parents (of children aged 0-17 years). Children found a short recall period and a visually appealing measure with ten questions or fewer most acceptable. Children with life-limiting conditions were more familiar with using rating scales such as numeric and Likert than their healthy siblings. Children emphasised the importance of completing the measure alongside interactions with a healthcare professional to enable them to talk about their responses. While parents assumed that electronic completion methods would be most feasible and acceptable, a small number of children preferred paper. CONCLUSIONS: This study demonstrates that children with life-limiting conditions can engage in communicating preferences regarding the design of a patient-centred outcome measure. Where possible, children should be given the opportunity to participate in the measure development process to enhance acceptability and uptake in clinical practice. Results of this study should be considered in future research on outcome measure development in children.
Identifier
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<a href="http://doi.org/10.1007/s40271-023-00627-w" target="_blank" rel="noreferrer noopener">10.1007/s40271-023-00627-w</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Bluebond-Langner M
Braybrook D
Bristowe K
Communication
Coombes L
Downing J
Ellis-Smith C
Family
Fraser LK
Harding R
Harðardóttir D
July List 2023
Murtagh FEM
Patient Participation
preference for care
Qualitative
Roach A
Scott H
Self Report
Siblings
the patient
-
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7e0b20cadf41ae133b9456a7d02ace12
Dublin Core
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Title
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PedPalASCNet Member Posters
Still Image
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Title
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The Impact of a Diagnosis among Parents of Children with Severe, Progressive, Life-Limiting Diseases (Poster)
Creator
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Romines V; van Karnebeek C; Siden H; Adam S; Birch P; Andrews G
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Rights
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Article information provided for research and reference use. It is licensed under the Creative Commons License: <a href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)</a>
Description
An account of the resource
Background: Children affected by severe, progressive life-limiting diseases experience a variety of symptoms and disease trajectories that are not well understood or described. Many of these children do not have a specific medical diagnosis, but are assigned a broad diagnosis that simply describes a cluster of their symptoms (e.g. “Severe Epilepsy”). Parents of these children may experience exclusion from their community, and feelings of helplessness, because their child does not have an “explainable” disease.
Aim: The objective of this study is to examine the impact of a diagnosis on the parents of children with severe, progressive, undiagnosed conditions, who were eligible for genetic testing.
Method: Eligible children had neurological impairment, limited communication, full-time caregivers and typically mobilized in wheelchairs. Children ranged in age from 5-20 years, with an average age of 11.5, and the average number of years since their symptoms first appeared was 11.2 years. Six parents were given a semi-structured interview by a genetic counselor in order to further understand their experience with their child’s condition and how reaching a diagnosis might impact their life and their child’s life. The parents were also given the opportunity to participate in genome-wide sequencing to potentially achieve a specific diagnosis for their child. The interview data was transcribed and coded into themes using the grounded theory approach.
Results: Five out of six of the parents interviewed felt a diagnosis for their child was of no, or very little, importance. All six parents felt school resources would not be impacted by a diagnosis and five of the parents felt community support would not be impacted either. The most influential reason to pursue a diagnosis was the chance to be better prepared for the child’s future and to gain insight into the future trajectory of the child’s condition. This reason was presented by all four parents who decided to subsequently undergo genome-wide sequencing.
Conclusion: Further research should look into comparing the parents’ experiences between younger children and older children to see if there is a greater level of acceptance associated among parents of children who have been affected for a longer time.
Charting the territory
Genetic Testing
Qualitative
-
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Title
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2021 Special Edition 1 - Low Resource Settings
Text
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Citation List Month
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.3889/oamjms.2021.6202" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3889/oamjms.2021.6202</a>
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Qualitative Analysis of Family-centered Care for Children with Cancer in Palliative Wards: An Evaluation of Needs and Barriers in Resource-limited Settings
Publisher
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Open Access Macedonian Journal of Medical Sciences
Date
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2021
Subject
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Low resource setting; qualitative; oncology
Creator
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Margaretha SEPM; Mulatsih S; Effendy C; Kusnanto H
Description
An account of the resource
Background: Many children with cancer are faced with fatal diagnosis and unbearable pain, and palliative care is highly needed. In Indonesia, the provision of palliative care is only accessible in a few major cities where most cancer treatment facilities are located and development has been slow. While, the implementation of family center care identified a number of challenges related to family empowerment to be included in the development and implementation of interventions. Objectives: This study aimed to assess the perspectives of nurses regarding family-centered treatment in Indonesia’s palliative wards for children with cancer. Methods: A qualitative approach to content analysis was employed. The study participants were 10 primary nurses in pediatric units who worked with cancer patients regularly. These participants were purposefully chosen. The interview session included 10 study participants. Participants’ work experience ranged from 2 to 11 years, and their age ranged from 27 to 51 years. Data were collected via face-to-face, semi-structured interviews that lasted for an average of 30 to 45 minutes. The interviews were performed to explore the participants’ understanding about the definition of family-centered palliative care, including the needs and obstacles to implementation. These were analyzed using content analysis methodology that includes five main segments: introduction, coding, theme creation, thematic classification, and reporting. Results: The themes from the study included an appreciation of palliative and family-centered care, palliative care capability and family-centered care, and multidisciplinary cooperation under three principles concerning needs and barriers. Conclusion: Integrating family-centered care approaches in providing palliative care for children with cancer as well as the resources required for such programs to be implemented by hospital management in working toward improved quality care for patients. Communication and continuity of care remain a challenge; training and equipping clinicians with skills and confidence to carry out family-centered care approaches and palliative care for children with cancer can aid in this process.
Identifier
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<a href="http://doi.org/10.3889/oamjms.2021.6202" target="_blank" rel="noreferrer noopener">10.3889/oamjms.2021.6202</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2021 Special Edition 1 - Low Resource Settings
Effendy C
Kusnanto H
Low resource setting
Margaretha SEPM
Mulatsih S
Oncology
Open Access Macedonian Journal of Medical Sciences
Qualitative
-
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Title
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2023 Special Edition 1 - Parent Perspectives List
Text
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Citation List Month
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1177/1355819618762960" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/1355819618762960</a>
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Title
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What constitutes meaningful engagement for patients and families as partners on research teams?
Publisher
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Journal of Health Services Research & Policy
Date
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2018
Creator
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Black A; Strain K; Wallsworth C; Charlton SG; Chang W; McNamee K; Hamilton C
Description
An account of the resource
Objective There is growing emphasis on health care organizations to ensure that lay people are meaningfully engaged as partners on research teams. Our aim was to explore the perspectives of patients, family members and informal caregivers who have been involved on health care research teams in Canada and elicit their recommendations for meaningful engagement. Methods We conducted a qualitative study guided by thematic analysis of transcripts of focus groups and interviews of 19 experienced patient research partners in Canada. Results We identified four main themes: research environment, expectations, support and value, which highlight participants' combined perspectives on important factors to ensure their engagement in research is meaningful. Conclusions Our findings add to the evolving evidence base on the perspectives of lay people involved in health care research and their recommendations for research leaders on meaningful engagement. Our study suggests that research leaders should provide a welcoming research environment, outline appropriate expectations for patient research partners on research teams, support patient research partners' engagement in projects and recognize the value patient research partners bring to health research.
Identifier
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<a href="http://doi.org/10.1177/1355819618762960" target="_blank" rel="noreferrer noopener">10.1177/1355819618762960</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).
2018
2023 SE1 - Parent Perspectives
Adult Aged
Aged
Attitude To Health
Black A
Canada
Caregivers
Chang W
Charlton SG
Family and Patient Participation
family engagement
Hamilton C
Journal of Health Services Research & Policy
McNamee K
patient engagement in research
Patient experience
patient-oriented research
Psychology
Qualitative
Research Subjects
Researcher-Subject Relations
Strain K
Wallsworth C
Young Adult
-
Dublin Core
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Title
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November 2022 List
Text
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Citation List Month
November 2022 List
URL Address
<a href="http://doi.org/10.1177/02692163221122325" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163221122325</a>
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The Health of Mothers of Children with a Life-Limiting Condition: A Qualitative Interview Study
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Life-Limiting Condition; Child; Paediatrics; Palliative Care; Qualitative
Creator
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Fisher V; Atkin K; Fraser LK
Description
An account of the resource
BACKGROUND: The number of children with a life-limiting condition is increasing. The mothers of these children commonly provide extensive care at home for their child and are at a higher risk of poor health than other mothers. The impact of this is rarely explored from mothers' perspectives. AIM: To explore mothers' accounts of their physical and mental health, experiences of accessing healthcare and who they think should support their health. DESIGN: Qualitative semi-structured interviews were conducted and analysed using thematic analysis. SETTING/PARTICIPANTS: Thirty mothers of children with a life-limiting condition were recruited via three UK children's hospices and social media. RESULTS: Mothers felt that their health concerns could be misunderstood by professionals, describing untimely and inappropriate support that failed to recognise the nature of caring for a child with a life-limiting condition. This led to mothers' reluctance in addressing these concerns. Mothers felt unable to prioritise their own needs, relative to those of their child and worried about who would look after their child if they did become unwell. They described stress as a result of battles with services rather than as a result of caregiving. Mothers valued feeling recognised as caregivers, which made it easier to look after their health alongside their child's. Hospice support was particularly valuable in this respect. CONCLUSIONS: A more unified system that recognises not only the unique set of challenges presented to mothers caring for a child with a life-limiting condition, but the value of palliative care services in supporting these mothers, is required.
Identifier
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<a href="http://doi.org/10.1177/02692163221122325" target="_blank" rel="noreferrer noopener">10.1177/02692163221122325</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).
Child
Paediatrics
Palliative Care
2022
Atkin K
Fisher V
Fraser LK
Life-limiting Condition
November 2022 List
Palliative Medicine
Qualitative
-
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Title
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October 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2022 List
URL Address
<a href="http://doi.org/10.1089/jpm.2022.0154">http://doi.org/10.1089/jpm.2022.0154</a>
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"Between Wings of Hope and Fear": Muslim Parents' Experiences with the American Health Care System
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
qualitative; barrier; health; transcription; pediatrics; communication; human; article; child; female; male; interview; fear; population; sample; patients; research; evaluation; care; clinical; genetic; person; analysis; size; system; content; semi; structured; United; marginalized; married; Muslim; States; thematic; wing
Creator
An entity primarily responsible for making the resource
Kolmar A; Kamal AH; Steinhauser KE
Description
An account of the resource
Background and Objectives: Historically marginalized religious and cultural groups are at risk for lower quality of care than majority groups. No study to date specifically queries Muslim experiences with the American health care system (AHCS). We performed a thematic analysis of Muslim parents' interactions with the AHCS and how their background informs their approach to care. Method(s): This was a qualitative study of Muslim parents of children with life-limiting conditions in the Research Triangle Area from December 2019 to March 2019. We conducted semistructured interviews with parents to assess their experiences with the AHCS. We probed interview transcripts using descriptive content analysis with NVivo10. Result(s): We interviewed 10 parents in the Research Triangle Area. All patients were female, most were married, most spoke at least one other language in addition to English, and most were not born in the United States. Several themes emerged highlighting open communication with care teams, willingness to share religious affiliations, and the importance of leaning into faith and accepting God's will. Conclusion(s): A thematic analysis of Muslim parents' interactions with the AHCS describes value in honest communication, mixed concerns about how providers will react to their religious affiliation, and emphasizes the importance of leaning heavily into faith and accepting God's plan. Future studies evaluating needs of Muslim patients, especially those with different diagnoses, language barriers, and a larger sample size will further delineate needs to minimize inequalities in care.
Identifier
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<a href="http://doi.org/10.1089/jpm.2022.0154">10.1089/jpm.2022.0154</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Analysis
Article
barrier
CARE
Child
Clinical
Communication
content
Evaluation
Fear
Female
Genetic
Health
Human
Interview
Journal of Palliative Medicine
Kamal AH
Kolmar A
Male
marginalized
married
Muslim
October 2022 List
Patients
Pediatrics
person
Population
Qualitative
Research
sample
semi
size
States
Steinhauser KE
structured
system
thematic
transcription
United
wing
-
Dublin Core
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Title
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September 2022 List
Text
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Citation List Month
September 2022 List
URL Address
<a href="http://doi.org/10.1007/s00134-022-06771-5" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00134-022-06771-5</a>
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Title
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How doctors manage conflicts with families of critically ill patients during conversations about end-of-life decisions in neonatal, pediatric, and adult intensive care
Publisher
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Intensive Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
child; human; female; male; article; adult; newborn; responsibility; conversation; family; morality; uncertainty; emotion; conflict; conflict; health; research; literacy; management; patient; clinical; genetic; qualitative; care; ill; intensive; unit; decision; making; clinical; critically; intensive; transcription
Creator
An entity primarily responsible for making the resource
Spijkers A S; Akkermans A; Smets EMA; Schultz MJ; Cherpanath TGV; van Woensel JBM; van Heerde M; van Kaam AH; van de Loo M; Willems DL; de Vos MA
Description
An account of the resource
Purpose Intensive care is a stressful environment in which team-family conflicts commonly occur. If managed poorly, conflicts can have negative effects on all parties involved. Previous studies mainly investigated these conflicts and their management in a retrospective way. This study aimed to prospectively explore team-family conflicts, including its main topics, complicating factors, doctors’ conflict management strategies and the effect of these strategies. Methods Conversations between doctors in the neonatal, pediatric, and adult intensive care unit of a large university-based hospital and families of critically ill patients were audio-recorded from the moment doubts arose whether treatment was still in patients’ best interest. Transcripts were coded and analyzed using a qualitative deductive approach. Results Team-family conflicts occurred in 29 out of 101 conversations (29%) concerning 20 out of 36 patients (56%). Conflicts mostly concerned more than one topic. We identified four complicating context- and/or family-related factors: diagnostic and prognostic uncertainty, families’ strong negative emotions, limited health literacy, and burden of responsibility. Doctors used four overarching strategies to manage conflicts, namely content-oriented, process-oriented, moral and empathic strategies. Doctors mostly used content-oriented strategies, independent of the intensive care setting. They were able to effectively address conflicts in most conversations. Yet, if they did not acknowledge families’ cues indicating the existence of one or more complicating factors, conflicts were likely to linger on during the conversation. Conclusion This study underlines the importance of doctors tailoring their communication strategies to the concrete conflict topic(s) and to the context- and family-related factors which complicate a specific conflict.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00134-022-06771-5" target="_blank" rel="noreferrer noopener">10.1007/s00134-022-06771-5</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Adult
Akkermans A
Article
CARE
Cherpanath TGV
Child
Clinical
Conflict
Conversation
critically
de Vos MA
decision
Emotion
Family
Female
Genetic
Health
Human
ill
intensive
Intensive Care Medicine
literacy
making
Male
Management
Morality
Newborn
Patient
Qualitative
Research
responsibility
Schultz MJ
September 2022 List
Smets EMA
Spijkers AS
transcription
Uncertainty
Unit
van de Loo M
van Heerde M
van Kaam AH
van Woensel JBM
Willems DL
-
Dublin Core
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Title
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September 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2022 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.05.009" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2022.05.009</a>
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Title
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Provider Perceptions for Withdrawing Life Sustaining Therapies at a Large Pediatric Hospital
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
child; human; female; male; article; perception; software; qualitative; health; hospital; life; analysis; therapy; practice; treatment; quality; study; erratum; clinical; withdrawal; drug; pediatric; neonatal; experiment; palliative; care; intensive; major; unit; sustaining; quantitative; guideline; coronary; data
Creator
An entity primarily responsible for making the resource
Sawyer K E; Carpenter AT; Coleman RD; Tume SC; Crawford CA; Casas JA
Description
An account of the resource
Context: More than 74% of pediatric deaths occur in an intensive care unit (ICU), with 40% occurring after withdrawal of life-sustaining therapies (WOLST). No needs assessment has described provider needs or suggestions for improving the WOLST process in pediatrics.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2022.05.009" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.05.009</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Analysis
Article
CARE
Carpenter AT
Casas JA
Child
Clinical
Coleman RD
coronary
Crawford CA
data
Drug
erratum
experiment
Female
guideline
Health
Hospital
Human
intensive
Journal of Pain and Symptom Management.
Life
Major
Male
Neonatal
Palliative
Pediatric
Perception
Practice
Qualitative
Quality
quantitative
Sawyer K E
September 2022 List
Software
study
sustaining
Therapy
Treatment
Tume SC
Unit
Withdrawal
-
Dublin Core
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Title
A name given to the resource
Special Edition #2 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Special Edition #2
URL Address
<a href="http://doi.org/10.1016/j.iccn.2021.103089" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.iccn.2021.103089</a>
Dublin Core
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Parents’ experiences during and after their child’s stay in the paediatric intensive care unit – A qualitative interview study
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Intensive and Critical Care Nursing
Date
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2021
Subject
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Child; Follow-up; Interview; Paediatric intensive care unit (PICU); Parents; Qualitative
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Jakobsen L; Kristensen KK; Laerkner E
Description
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Background Having a child admitted to the paediatric intensive care unit (PICU) is often an emotional and stressful experience for parents. Aim The aim of the study was to explore parents’ experiences during and after their child’s hospitalization in the PICU and to investigate whether parents have a need for post-PICU follow-up. Material and methods The research design was a qualitative study inspired by Ricoeur’s phenomenological-hermeneutic approach. The context of the study was a six-bed PICU in a university hospital in Denmark. In 2017, semi-structured interviews were conducted with four couples and three mothers six to 14 weeks after their child had been discharged from the PICU. The data were analysed and interpreted through Ricoeur’s three analytical levels and presented in themes and subthemes. Findings Three themes were identified in the analytical process: “The challenging PICU stay”, “The value of a network” and “The uncertain post-PICU trajectory”. Conclusion Information, dialogue and interaction with familiar health professionals, the diary written by PICU nurses, the parents’ personal network and social media supported the parents during and after the PICU stay. The parents expressed that post-PICU follow-up was not the most essential but that follow-up initiatives may be arranged individually.
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<a href="http://doi.org/10.1016/j.iccn.2021.103089" target="_blank" rel="noreferrer noopener">10.1016/j.iccn.2021.103089</a>
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2021
2022 Special Edition 2 - Parent Perspectives
Child
Follow-up
Intensive and Critical Care Nursing
Interview
Jakobsen L
Kristensen KK
Laerkner E
Paediatric intensive care unit (PICU)
Parents
Qualitative
-
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April 2022 List
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April 2022 List
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<a href="http://doi.org/10.1016/j.iccn.2022.103216" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.iccn.2022.103216</a>
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Shifting and intersecting needs: Parents' experiences during and following the withdrawal of life sustaining treatments in the paediatric intensive care unit
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Intensive and Critical Care Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Bereavement; End-of-life care; Family-centred care; Grief; Long-term outcomes; Qualitative
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Broden EG; Werner-Lin A; Curley MAQ; Hinds Rnps
Description
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OBJECTIVES: To examine parents' perceptions of nursing care needs; including specific concerns, preferences and supportive actions for themselves and their dying child during and following the withdrawal of life support in the paediatric intensive care unit. RESEARCH DESIGN: Qualitative description with content analysis. SETTING: Interviews with eight parents of eight children who died in the paediatric intensive care unit 7-11 years prior. MAIN OUTCOME MEASURES: Descriptive categories of parents' perceptions of end-of-life needs. FINDINGS: Parents identified four shifting and intersecting categories of needs: To be together, To make sense of the child's evolving clinical care, To manage institutional, situational, and structural factors, and To navigate an array of emotions in a sterile context. Being closely connected with the child was highly important, but often intersected with other domains, requiring nurses' support. Parents' memories demonstrated persistent uncertainty about their child's end-of-life care that influenced their long-term grief. CONCLUSIONS: Intersections between parent-identified care needs suggest potential mechanisms to strengthen nurses' care for dying children. Equipped with the knowledge that the parent-child bond often shapes parents' priorities; nurses should aim to facilitate connections amidst paediatric intensive care unit processes. Ongoing uncertainty in parents' adaptation to loss suggests that attention to instances when needs intersect can have a lasting impact on parents' grief.
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<a href="http://doi.org/10.1016/j.iccn.2022.103216" target="_blank" rel="noreferrer noopener">10.1016/j.iccn.2022.103216</a>
2022
April 2022 List
Bereavement
Broden EG
Curley MAQ
End-of-life Care
Family-centred Care
Grief
Hinds Rnps
Intensive and Critical Care Nursing
Long-term outcomes
Qualitative
Werner-Lin A
-
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March 2022 List
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March 2022 List
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<a href="http://doi.org/10.1177/02692163211059345" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/02692163211059345</a>
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It was like an airbag, it cushioned the blow': A multi-site qualitative study of bereaved parents' experiences of using cooling facilities
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Palliative Medicine
Date
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2022
Subject
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Bereavement; grief; qualitative; paediatric palliative care; cold cot; cooling blanket; cooling facilities; cold bedrooms
Creator
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Hackett J; Heavey E; Beresford B
Description
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BACKGROUND: Evidence on the benefits to parents of spending time with their child in the hours after their death means this is now routine practice. UK children's hospices offer parents the opportunity to extend this period by using cooling facilities (i.e. cooled 'bedrooms'; cooling blankets/mattresses) to slow deterioration. AIM: To explore parents' experiences of using cooling facilities and beliefs about how it shaped experiences of the very early days of bereavement, and on-going grieving processes. METHODS: Multi-site study involving in-depth interviews with parents bereaved in the previous 3 years. Grief theories informed data analysis, which employed narrative and thematic approaches. Eight hospices supported recruitment. RESULTS: Twenty-two mothers and eight fathers were recruited, representing 25% of families approached. Duration of use of a cooling facility varied, as did the amount of time spent with the child. All parents treasured this period, valuing the way it eased separation from their child and gave some control over when this happened. They believed all bereaved parents should have the opportunity to use a cooling facility. Using a cooling facility supported parents' engagement with grief tasks including acceptance of loss, processing emotional pain and facing changes to their lives brought about by their child's death. Memories and mementoes created during this period served to support on-going connections with the child. Parents who used a cooling facility at a hospice reported benefits of the setting itself. CONCLUSIONS: As well as easing the very early days of loss, use of cooling facilities may influence longer-term bereavement outcomes.
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<a href="http://doi.org/10.1177/02692163211059345" target="_blank" rel="noreferrer noopener">10.1177/02692163211059345</a>
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2022
Bereavement
Beresford B
Cold bedrooms
Cold cot
cooling blanket
cooling facilities
Grief
Hackett J
Heavey E
March 2022 List
paediatric palliative care
Palliative Medicine
Qualitative
-
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March 2022 List
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March 2022 List
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<a href="http://doi.org/10.1016/j.pedn.2022.01.013" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pedn.2022.01.013</a>
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Family-centered care and pediatric death in the emergency department: A qualitative study using framework analysis
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Journal of Pediatric Nursing
Date
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2022
Subject
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Family-centered care; Emergency department; Nursing; Qualitative; Pediatric death
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McKenna L; Shimoinaba K; Copnell B
Description
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Background Family-centered care is an important concept underpinning care of children. Although much researched in some settings, little research has explored specialist settings, or areas where both children and adults are cared for, such as the emergency department. Methods This study sought to explore how nurses employ family-centered care in delivering care to children and families when a child dies in the emergency department. Using a descriptive, qualitative approach, semi-structured interviews were conducted with 24 emergency nurses from six Australian states. Interviews were audio-recorded and transcribed verbatim. Framework analysis was applied to examine alignment with family-centered care principles. Findings Nurses described providing support and education, and encouraged families to engage in care decisions, including about ceasing resuscitation efforts. Commonly, senior staff members were allocated during emergencies to support parents. Discussion Emergency nurses should be offered education on family-centered care, and research undertaken to explore families' experiences of their child dying in the emergency department. Practice Implication Family-centered care should be a focus for the care of children and their families in the emergency department, regardless of the pressure from rapidly occurring events.
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<a href="http://doi.org/10.1016/j.pedn.2022.01.013" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2022.01.013</a>
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2022
Copnell B
Emergency Department
Family-centered Care
Journal of Pediatric Nursing
March 2022 List
McKenna L
Nursing
Pediatric Death
Qualitative
Shimoinaba K
-
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May 2021 List
Text
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May 2021 List
URL Address
<a href="http://doi.org/10.1177/02692163211000238" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/02692163211000238</a>
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Hearing the voices of children diagnosed with a life-threatening or life-limiting illness and their parents' accounts in a palliative care setting: A qualitative study
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Palliative Medicine
Date
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2021
Subject
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Children; palliative care; qualitative; experiences; life-limiting; life-threatening
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Ciobanu E; Preston N
Description
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BACKGROUND: Exploring children's experiences of a life-threatening or life-limiting diagnosis is essential in offering appropriate care for them. There have been few studies examining these and they are often from the parent's perspective. Even if adults are frequently unwilling to share information with children, they become aware of their diagnosis and prognosis. The theory of awareness contexts provided a theoretical framework through which it can be understood what children knew about their condition. AIM: To advance the understanding of the experiences of children with a life-threatening or life-limiting condition. DESIGN: A qualitative study using dyadic interviews and thematic analysis. SETTING/PARTICIPANTS: Ten children between 14 to 17 years old with a life-threatening or life-limiting illness who were supported by a palliative care service in Romania. Interviews were also undertaken with their mothers. RESULTS: Interview data demonstrated that there was a gap in the child's experience and understanding of their condition compared to their parents. The data produced six major themes: awareness of the illness, death and dying, the spiritual response to illness, the emotional response to illness, striving for normality and independence and coping strategies. The study showed that children can read subtle cues or they may talk with other children to learn about their illness when information is not openly available to them. CONCLUSIONS: Children in the study often know more about their condition than their parents realised. Using this understanding, healthcare professionals can advise parents and children about how to communicate with one another which would enable the children to give voice to their thoughts, emotions and experiences.
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<a href="http://doi.org/10.1177/02692163211000238" target="_blank" rel="noreferrer noopener">10.1177/02692163211000238</a>
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2021
Children
Ciobanu E
Experiences
Life-limiting
Life-threatening
May 2021 List
Palliative Care
Palliative Medicine
Preston N
Qualitative
-
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Title
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2020 Oncology List
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Oncology 2020 List
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<a href="http://doi.org/10.3390/children7080086" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/children7080086</a>
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Defining a "Good Death" in Pediatric Oncology: A Mixed Methods Study of Healthcare Providers
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Children (Basel)
Date
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2020
Subject
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palliative care; cancer; qualitative; adolescent and young adult; interdisciplinary
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Taylor M R; Barton K S; Kingsley J M; Heunis J; Rosenberg A R
Description
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Delivering optimal end-of-life (EOL) care to children and adolescents is a healthcare priority, yet relatively little is known about what patients, families, and healthcare providers (HCPs) consider "best" practices. The objective of this study was to identify factors that pediatric oncology HCPs consider important for EOL care. This was a cross-sectional mixed methods study. Participants were multidisciplinary pediatric oncology staff who completed surveys and participated in semi-structured qualitative interviews. Interviews were analyzed using a modified grounded theory approach. Provider statements were compared based on years of experience (≤10 or >10 years) and discipline (non-physician or physician). A total of n = 19 staff (74% female) enrolled, including physicians (n = 8), advanced practice providers (n = 4), nurses (n = 2), music/art therapists (n = 2), physical therapists (n = 1), educators (n = 1), and chaplains (n = 1). Most HCPs identified communication, symptom control, and acceptance as features of a "good" death. Compared to physicians, non-physicians focused on relationships (67% vs. 33%, p = 0.007); HCPs with ≤10 years of experience (n = 11) more frequently identified the benefits of a multidisciplinary team (74% vs. 26%, p = 0.004). This study identified many common HCP-defined components of "good" pediatric EOL care in addition to some differing perspectives depending on discipline and experience. Incorporating diverse HCP perspectives with those of the patient and family can guide contemporary high-quality pediatric EOL clinical care and education.
Identifier
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<a href="http://doi.org/10.3390/children7080086" target="_blank" rel="noreferrer noopener">10.3390/children7080086</a>
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2020
adolescent and young adult
Barton K S
Cancer
Children (Basel)
Heunis J
Interdisciplinary
Kingsley J M
Oncology 2020 List
Palliative Care
Qualitative
Rosenberg A R
Taylor M R
-
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June 2020 List
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June 2020 List
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<a href="http://doi.org/10.1080/17482631.2020.1756686" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/17482631.2020.1756686</a>
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Consulting with a folk deity before making decisions: spiritual practices in parents facing end-of-life decisions for their child on life support with brain stem dysfunction
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International Journal of Qualitative Studies on Health and Well-being
Date
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2020
Subject
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brain stem dysfunction; decision making; end-of-life; parents; qualitative; Spiritual practices
Creator
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Lin S C; Huang M C
Description
An account of the resource
Background: Adolescents with brain stem dysfunction may undergo many invasive treatments, and parents are often faced with making the decision to withdraw treatment. However, in the face of their child's death, the spiritual practices of parents dealing with end-of-life decision-making remain under investigated.Purpose: This study explores the spiritual practices in parents making end-of-life decisions for adolescents on life support with brain stem dysfunction.Method: A descriptive phenomenological study was conducted through in-depth interviews with three parents of two adolescents in Taiwan. Data were analysed using Colaizzi's seven-step protocol.Results: Three main themes emerged: (1) faith during decision-making, (2) struggles during decision-making, (3) transformation during decision-making. The findings indicate that "transforming the nature of hope" is the essence of the experience.Conclusion: Family-centred care, gaining insight into parental spiritual practices, and developing culturally-appropriate care are recommended.
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<a href="http://doi.org/10.1080/17482631.2020.1756686" target="_blank" rel="noreferrer noopener">10.1080/17482631.2020.1756686</a>
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2020
brain stem dysfunction
Decision Making
end-of-life
Huang M C
International Journal Of Qualitative Studies On Health And Well-being
June 2020 List
Lin S C
Parents
Qualitative
Spiritual practices
-
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June 2020 List
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June 2020 List
URL Address
<a href="http://doi.org/10.1177/1049732320911627" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049732320911627</a>
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Title
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Health Care Professionals' Awareness of a Child's Impending Death
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Qualitative Health Research
Date
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2020
Subject
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case study; children; decision-making; end-of-life issues; Midwest; professional; qualitative; theory development
Creator
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Kobler K; Bell C; Kavanaugh K; Gallo A M; Corte C; Vincent C
Description
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Health care professionals' (HCPs) experiences during early pediatric end-of-life care were explored using a theory-building case study approach. Multiple data collection methods including observation, electronic medical record review, and semi-structured interviews were collected with 15 interdisciplinary HCPs across four cases. Within- and across-case analyses resulted in an emerging theory. HCPs' initial awareness of a child's impending death is fluid, ongoing, and informed through both relational and internal dimensions. Initial cognitive awareness is followed by a deeper focus on the child through time-oriented attention to the past, present, and future. HCPs engage in a "delicate dance of figuring out" key issues. Awareness was exemplified through four themes: professional responsibility, staying connected, grounded uncertainty, and holding in. The emerging theoretical model provides a framework for HCPs to assess their ongoing awareness, identify personal assumptions, and inform gaps in understanding when facilitating early end-of-life care discussions with families.
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<a href="http://doi.org/10.1177/1049732320911627" target="_blank" rel="noreferrer noopener">10.1177/1049732320911627</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).
2020
Bell C
Case Study
Children
Corte C
Decision-making
End-Of-Life Issues
Gallo A M
June 2020 List
Kavanaugh K
Kobler K
Midwest
Professional
Qualitative
Qualitative Health Research
theory development
Vincent C
-
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Title
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April 2020 List
Text
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April 2020 List
URL Address
<a href="http://doi.org/10.1007/s10943-020-00991-z" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s10943-020-00991-z</a>
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“Give them the door but don’t push them through it”: Family Attitudes Toward Physician-Led Spiritual Care in Pediatric Palliative Medicine
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Journal of Religion and Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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Family Attitudes; palliative care; pediatric; pediatric palliative care; pediatric palliative medicine; physicians; qualitative; religious care; spiritual care
Creator
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McNamara L C; Okoniewski W; Maurer S H; Moehling K; Hall D E; Schenker Y
Description
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Little is known about pediatric caregivers’ perceptions of religious or spiritual (R/S) care provided by physicians. We conducted a qualitative, semistructured interview study to understand perceptions of pediatric caregivers toward physician-led R/S care. Participants were 20 primary caregivers whose children were hospitalized and receiving palliative care services. Interviews were audio recorded, transcribed verbatim, and analyzed using constant comparative methods. Three recurrent themes emerged regarding physician-led R/S care: (1) Most caregivers view providing R/S care as a positive sign of physician empathy, while a minority (3/20) prefer to keep R/S and medical care separate, (2) many caregivers prefer R/S care from a physician with whom they have a close relationship and/or share a faith background, and (3) physicians should open the door, but allow families to lead conversations about R/S care. Caregivers have mixed perceptions on physicians engaging in R/S care; most prefer that families set the direction of R/S care for themselves and their loved ones. Physicians should be trained to evaluate families’ spiritual backgrounds and needs in ways that respectfully open the door to these conversations.
Identifier
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<a href="http://doi.org/10.1007/s10943-020-00991-z" target="_blank" rel="noreferrer noopener">10.1007/s10943-020-00991-z</a>
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2020
April 2020 List
Family Attitudes
Hall D E
Journal Of Religion And Health
Maurer S H
McNamara L C
Moehling K
Okoniewski W
Palliative Care
Pediatric
Pediatric Palliative Care
pediatric palliative medicine
Physicians
Qualitative
religious care
Schenker Y
Spiritual Care
-
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Title
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April 2020 List
Text
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April 2020 List
URL Address
<a href="http://doi.org/10.1542/hpeds.2019-0185" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/hpeds.2019-0185</a>
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Title
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Parent Perspectives During Hospital Readmissions for Children With Medical Complexity: A Qualitative Study
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Hospital Pediatrics
Date
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2020
Subject
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child; children; children with medical complexity; parent perspectives; parental perspectives; pediatric; qualitative; qualitative study; readmission
Creator
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Leary J C; Krcmar R; Yoon G H; Freund K M; LeClair A M
Description
An account of the resource
OBJECTIVES: Children with medical complexity (CMC) have high readmission rates, but relatively little is known from the parent perspective regarding care experiences surrounding and factors contributing to readmissions. We aimed to elicit parent perspectives on circumstances surrounding 30-day readmissions for CMC. METHODS: We conducted 20 semistructured interviews with parents of CMC experiencing an unplanned 30-day readmission at 1 academic medical center between December 2016 and January 2018, asking about topics such as previous discharge experiences, medical services and resources, and home environment and social support. Interviews were recorded, professionally transcribed, and analyzed thematically by using a modified grounded theory approach. RESULTS: Children ranged in age from 0 to 15 years, with neurologic complex chronic conditions being predominant (35%). Although the majority of parents did not identify any factors that they perceived to have contributed to readmission, themes emerged regarding challenges associated with chronicity of care and transitions of care that might influence readmissions, including frequency of hospital use, symptom confusion, lack of inpatient continuity, resources needed but not received, and difficulty filling prescriptions. CONCLUSIONS: Parents identified multiple challenges associated with chronicity of medical management and transitions of care for CMC. Future interventions aiming to improve continuity and communication between admissions, ensure that home services are provided when applicable and prescriptions are filled, and provide comprehensive support for families in both the short- and long-term may help improve patient and family experiences while potentially decreasing readmissions.
Identifier
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<a href="http://doi.org/10.1542/hpeds.2019-0185" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2019-0185</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).
2020
April 2020 List
Child
Children
Children With Medical Complexity
Freund K M
Hospital Pediatrics
Krcmar R
Leary J C
LeClair A M
parent perspectives
Parental Perspectives
Pediatric
Qualitative
Qualitative Study
Readmission
Yoon G H
-
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Title
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2019 Developing World List
Text
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Citation List Month
Developing World 2019 List
URL Address
<a href="http://doi.org/10.1016/j.pedn.2018.12.004" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pedn.2018.12.004</a>
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The practice of mutual protection in the care of children with palliative care needs: A multiple qualitative case study approach from Jordan
Publisher
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Journal of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Child; Communication; Jordan; Life- limiting; Mutual protection; Palliative care; Qualitative
Creator
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Atout M; Hemingway P; Seymour J
Description
An account of the resource
PURPOSE: This study explores the experience of disclosing critical information in the care of children with palliative care needs, from the perspective of physicians, nurses, and mothers in Jordan. DESIGN AND METHODS: This study employed a qualitative case study approach. It was conducted in three paediatric units in a Jordanian hospital. Each case comprised a child aged 1-12years with a condition eligible for palliative care who received health care in one of these units, and their most involved carers (e.g. mother, physician and nurse). Two data collection methods were employed: participant observation and semi-structured interviews with three categories of participants: mothers, physicians, and nurses. Ethical approval was obtained from the hospital ethical review board. Written consent was obtained from all participants. RESULTS: Qualitative case studies were developed around 15 children (aged 1-12years, nine were boys and six were girls, with varying diagnoses: renal disease, neurological conditions, and congenital heart defects). A total of 197 observational hours and 60 interviews were completed (15 mothers, 12 physicians and 21 nurses). The findings demonstrate that the practice of 'mutual protection' dominated communication between children, parents and clinical staff. Parents protected their children by disclosing only partial information about their disease, and by avoiding any information they thought would cause the child distress or loss of hope. Similarly, children avoided expression to their parents of their anxieties or fears, in order to protect them. In turn, nurses attempted to ensure observance of professional boundaries with children and mothers to avoid a sense of loss when a child died. CONCLUSION: The findings of the current study indicate that while open and honest communication between parents and children is generally recommended by literature, not all mothers agree with adopting open communication with their children concerning their illnesses. Therefore, any future intervention planned for them should respect parents' autonomy and decisions in addition to their cultural backgrounds. PRACTICAL IMPLICATIONS: The provision of ongoing education and specialised training for professionals to provide them with culturally sensitive skills in communication and provision of emotional support for children and parents is needed to improve clinical practice in healthcare settings with limited access to specialist palliative care such as Jordan.
Identifier
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<a href="http://doi.org/10.1016/j.pedn.2018.12.004" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2018.12.004</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).
2018
Atout M
Child
Communication
Developing World 2019 List
Hemingway P
Jordan
Journal of Pediatric Nursing
Life- limiting
Mutual protection
Palliative Care
Qualitative
Seymour J
-
Dublin Core
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Title
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January 2020 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
January 2020 List
URL Address
<a href="http://doi.org/10.1186/s12887-019-1849-0" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12887-019-1849-0</a>
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Title
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The clinical practice guideline palliative care for children and other strategies to enhance shared decision-making in pediatric palliative care; pediatricians' critical reflections
Publisher
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BMC Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Children; Clinical practice guideline; Interviews; Palliative care; Qualitative; Shared decision-making
Creator
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Dreesens D; Veul L; Westermann J; Wijnands N; Kremer L; van der Weijden T; Verhagen E
Description
An account of the resource
BACKGROUND: Because of practice variation and new developments in palliative pediatric care, the Dutch Association of Pediatrics decided to develop the clinical practice guideline (CPG) palliative care for children. With this guideline, the association also wanted to precipitate an attitude shift towards shared decision-making (SDM) and therefore integrated SDM in the CPG Palliative care for children. The aim was to gain insight if integrating SDM in CPGs can potentially encourage pediatricians to practice SDM. Its objectives were to explore pediatricians' attitudes and thoughts regarding (1) recommendations on SDM in CPGs in general and the guideline Palliative care for children specifically; (2) other SDM enhancing strategies or tools linked to CPGs. METHODS: Semi-structured face-to-face interviews. Pediatricians (15) were recruited through purposive sampling in three university-based pediatric centers in the Netherlands. The interviews were audio-recorded and transcribed verbatim, coded by at least two authors and analyzed with NVivo. RESULTS: Some pediatricians considered SDM a skill or attitude that cannot be addressed by clinical practice guidelines. According to others, however, clinical practice guidelines could enhance SDM. In case of the guideline Palliative care for children, the recommendations needed to focus more on how to practice SDM, and offer more detailed recommendations, preferring a recommendation stating multiple options. Most interviewed pediatricians felt that patient decisions aids were beneficial to patients, and could ensure that all topics relevant to the patient are covered, even topics the pediatrician might not consider him or herself, or deems less important. Regardless of the perceived benefit, some pediatricians preferred providing the information themselves instead of using a patient decision aid. CONCLUSIONS: For clinical practice guidelines to potentially enhance SDM, guideline developers should avoid blanket recommendations in the case of preference sensitive choices, and SDM should not be limited to recommendations on non-treatment decisions. Furthermore, preference sensitive recommendations are preferably linked with patient decision aids.
Identifier
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<a href="http://doi.org/10.1186/s12887-019-1849-0" target="_blank" rel="noreferrer noopener">10.1186/s12887-019-1849-0</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).
2019
Bmc Pediatrics
Children
Clinical practice guideline
Dreesens D
Interviews
January 2020 List
Kremer L
Palliative Care
Qualitative
Shared Decision-making
van der Weijden T
Verhagen E
Veul L
Westermann J
Wijnands N
-
Dublin Core
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Title
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December 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2019 List
URL Address
<a href="http://doi.org/10.1177/1367493519875593" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1367493519875593</a>
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Title
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The core features and outcomes of a specialised camp programme for children with life-limiting conditions and their families: A qualitative multi-perspective approach
Publisher
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Journal of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Family camp programme; paediatric life-limiting illness; qualitative
Creator
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Mulligan S; Guerin S; McKiernan A; Brown A; Hartnett M; Gray D; Kiernan G
Description
An account of the resource
Previous research has reported that the families of children with enduring and life-limiting health conditions are at risk of negative psychosocial effects. Adjunct to medical interventions, specialist camp programmes have been developed to promote familial adjustment. However, limited research has been carried out in this area. The aim of this study was to describe the core features and outcomes of a specialised camp programme for children with life-limiting conditions (LLC) and their family. Semi-structured interviews were conducted with four professionals, three volunteers involved in facilitating the programme and two mothers representing families that attended the programme. Multiple perspectives were sought to gain a detailed understanding of the programme and outcomes. Data were analysed through an inductive thematic approach. There was considerable overlap among participant groups on the core features and outcomes of the programme. Thematically, core features are described in terms of familial togetherness, peer interaction, safety and positive experiences. Noted outcomes include lasting memories, continued peer relations for parents and siblings and enhancement of relationships between family members and professionals. Findings suggest that specialised camp programmes may provide families of children with LLC with positive experiences that support adjustment, although further research is required.
Identifier
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<a href="http://doi.org/10.1177/1367493519875593" target="_blank" rel="noreferrer noopener">10.1177/1367493519875593</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).
2019
Brown A
December 2019 List
Family camp programme
Gray D
Guerin S
Hartnett M
Journal Of Child Health Care
Kiernan G
McKiernan A
Mulligan S
paediatric life-limiting illness
Qualitative
-
Dublin Core
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Title
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October 2019 List
Text
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Citation List Month
October 2019 List
URL Address
<a href="http://doi.org/10.1007/s10897-018-0294-9" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s10897-018-0294-9</a>
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Title
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Alone in a Crowd? Parents of Children with Rare Diseases’ Experiences of Navigating the Healthcare System
Publisher
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Journal of Genetic Counseling
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Family caregiving; Healthcare system; Navigation; Patient experience; Qualitative; Rare disease
Creator
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Baumbusch J; Mayer S; Sloan-Yip I
Description
An account of the resource
A disorder is considered a rare disease if it affects 1 in 2000, hence, while independently unique, collectively, these conditions are quite common. Many rare diseases are diagnosed during childhood, and therefore parents become primary caregivers in addition to their parental role. Despite the prevalence of rare diseases among children, there has been little research focused on parents’ experiences of navigating the healthcare system, a gap we begin to address in this study. Guided by an interpretive description methodology, participants were recruited through online listservs and posting flyers at a pediatric hospital in Western Canada. Sixteen parents (15 mothers and 1 father) participated in in-depth, semi-structured interviews between April 2013 and March 2014. Data were analyzed inductively, generating the main study themes. Findings illuminated the challenges parents’ experienced on their child’s diagnostic journey—from seeking, to receiving, to adjusting to the rare disease diagnosis. Following diagnosis, gaps, and barriers to services resulted in parents pursuing services that could support their child’s unique care needs, which often resulted in out-of-pocket payments and changes to employment. Parents found peer support, both online and in person, to be an effective resource. This study illustrates the common challenges experienced by parents of children with rare diseases as they navigate the healthcare system. Parents’ role as “expert caregiver” was rarely acknowledged by healthcare providers, pointing to the need to foster more egalitarian relationships. As well, parents were burdened with the additional role of care coordinator, a role that could be filled formally by a healthcare provider. Lastly, peer support was a key resource in terms of information and emotional support for parents who often begin their journey feeling isolated and alone. Policies and programs are needed that validate the invisible care work of parents and ensure adequate formal supports are in place to mitigate potential sources of inequity for these families. Furthermore, genetic counselors can play a key role in ensuring parents’ informational needs are addressed at the time of diagnosis and in connecting families who share common experiences regardless of the rare disease diagnosis.
Identifier
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<a href="http://doi.org/10.1007/s10897-018-0294-9" target="_blank" rel="noreferrer noopener">10.1007/s10897-018-0294-9</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).
2018
Baumbusch J
Family caregiving
Healthcare system
Journal of Genetic Counseling
Mayer S
Navigation
October 2019 List
Patient experience
Qualitative
Rare Disease
Sloan-Yip I
-
Dublin Core
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Title
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May 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2019 List
URL Address
<a href="http://doi.org/10.1177/1049732319837228" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049732319837228</a>
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Title
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Sibling Relationships Over the Life Course: Growing Up With a Disability
Publisher
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Qualitative Health Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
lived experience; Israel; qualitative; developmental disability; health; families; interpretive phenomenological analysis
Creator
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Avieli H; Band-Winterstein T; Araten BT
Identifier
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<a href="http://doi.org/10.1177/1049732319837228" target="_blank" rel="noreferrer noopener">10.1177/1049732319837228</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).
Description
An account of the resource
The research explores sibling relationships, and the ways in which they are shaped over the life course by family members, in families with a lifelong disability. In-depth, semistructured interviews were conducted with 15 family units including a parent, a sibling, and an adult sibling with a disability. The content analysis revealed five sibling relationship patterns: (a) "Not a child, but a parent caretaker"-the parent-surrogate sibling; (b) "We somehow grew apart"-the estranged sibling; (c) "It is important for me to maintain some kind of distance"-the bystander sibling; (d) "When there's something they want to tell him, they always send me"-the mediator sibling; and (e) "I love him to death"-the friend sibling. These patterns of adult sibling relationships are discussed in relation to family dynamics, values, and legacies; recommendations for practice and research are made.
2019
Araten BT
Avieli H
Band-Winterstein T
Developmental Disability
Families
Health
interpretive phenomenological analysis
Israel
lived experience
May 2019 List
Qualitative
Qualitative Health Research
-
Dublin Core
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Title
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April 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2016.0264" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2016.0264</a>
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Title
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Death of One Twin during the Perinatal Period: An Interpretative Phenomenological Analysis
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
congenital abnormality; Bereavement; Bereavement; Female; Humans; Infant; Interviews as Topic; Male; Newborn; Parents; Parents/ psychology; Pregnancy; Qualitative Research; Twins; palliative care; qualitative; Perinatal Death; Qualitative research; female; male; perinatal death; bereavement; Twins; twins
Creator
An entity primarily responsible for making the resource
Meaney S; Corcoran P; O'Donoghue K
Description
An account of the resource
BACKGROUND: Perinatal death is one of the most difficult bereavements due to the shock and profound grief experienced by parents. It has been established that such bereavement has a life-lasting impact. Twin pregnancy is associated with increased perinatal risk, with higher rates of perinatal mortality than in singleton pregnancy. OBJECTIVES: To date, few studies have examined the effect of the loss of one twin diagnosed with a congenital abnormality during pregnancy. This study aims at gaining insight into parents' views to explore the impact of death of one twin in the perinatal period. DESIGN: A qualitative study was undertaken by utilizing interpretative phenomenological analysis. Nine parents who have experienced perinatal loss, all of whom had a prenatal diagnosis of congenital abnormality, participated in in-depth semi-structured interviews. RESULTS: Parents recounted how distressed they were when initially informed that there was a complication. On diagnosis, parents began a complex palliative journey, proceeding in the pregnancy and grieving one baby while trying to ensure the welfare of the co-twin. As parents were encouraged to focus on the "normal" twin, they felt their opportunity to grieve was diminished. It was important that the surviving twin would be identified as a twin and know of their sibling. However, parents conveyed feelings of deep sadness, because this was also a reminder that one twin would always be missing. CONCLUSIONS: Parents were not prepared for the complications they experienced in pregnancy. Clear and appropriate information in relation to perinatal palliative care should be provided to parents in twin pregnancies discordant for fetal abnormality.
Identifier
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<a href="http://doi.org/10.1089/jpm.2016.0264" target="_blank" rel="noreferrer noopener">10.1089/jpm.2016.0264</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).
2017
April 2018 List
Bereavement
congenital abnormality
Corcoran P
Female
Humans
Infant
Interviews As Topic
Journal of Palliative Medicine
Male
Meaney S
Newborn
O'Donoghue K
Palliative Care
Parents
Parents/ Psychology
Perinatal Death
Pregnancy
Qualitative
Qualitative Research
Twins
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1111/jocn.12634" target="_blank" rel="noreferrer">http://doi.org/10.1111/jocn.12634</a>
Dublin Core
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Title
A name given to the resource
The challenge to health professionals when carers resist truth telling at the end of life: a qualitative secondary analysis
Publisher
An entity responsible for making the resource available
Journal Of Clinical Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
end of life; informal carer; Qualitative; renal; staff challenges; truth telling
Creator
An entity primarily responsible for making the resource
Noble H; Price JE; Porter S
Description
An account of the resource
AIMS AND OBJECTIVES: To draw out the similar complexities faced by staff around truth-telling in a children's and adult population and to interrogate the dilemmas faced by staff when informal carers act to block truth-telling. BACKGROUND: Policy encourages normalisation of death, but carers may act to protect or prevent the patient from being told the truth. Little is known about the impact on staff. DESIGN: Secondary analysis of data using a supra-analysis design to identify commonality of experiences. METHODS: Secondary 'supra-analysis' was used to transcend the focus of two primary studies in the UK, which examined staff perspectives in a palliative children's and a palliative adult setting, respectively. The analysis examined new theoretical questions relating to the commonality of issues independently derived in each primary study. Both primary studies used focus groups. Existing empirical data were analysed thematically and compared across the studies. RESULTS: Staff reported a hiding of the truth by carers and sustained use of activities aimed at prolonging life. Carers frequently ignored the advance of end of life, and divergence between staff and carer approaches to truth-telling challenged professionals. Not being truthful with patients had a deleterious effect on staff, causing anger and feelings of incompetence. CONCLUSIONS: Both children's and adult specialist palliative care staff found themselves caught in a dilemma, subject to policies that promoted openness in planning for death and informal carers who often prevented them from being truthful with patients about terminal prognosis. This dilemma had adverse psychological effects upon many staff. RELEVANCE TO CLINICAL PRACTICE: There remains a powerful death-denying culture in many societies, and carers of dying patients may prevent staff from being truthful with their patients. The current situation is not ideal, and open discussion of this problem is the essential first step in finding a solution.
2014-05
Identifier
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<a href="http://doi.org/10.1111/jocn.12634" target="_blank" rel="noreferrer">10.1111/jocn.12634</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).
Type
The nature or genre of the resource
Journal Article
2014
Backlog
End Of Life
informal carer
Journal Article
Journal of Clinical Nursing
Noble H
Porter S
Price JE
Qualitative
renal
staff challenges
truth telling
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1007/s11764-016-0517-8" target="_blank" rel="noreferrer">http://doi.org/10.1007/s11764-016-0517-8</a>
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Title
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Adult childhood cancer survivors' narratives of managing their health: the unexpected and the unresolved
Publisher
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Journal Of Cancer Survivorship: Research And Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Health Services; Childhood cancer survivor; Narrative research; Patient perspective; Qualitative
Creator
An entity primarily responsible for making the resource
Howard AF; Goddard K; Tan de Bibiana J; Pritchard S; Olson R; Kazanjian A
Description
An account of the resource
PURPOSE: Currently, 80 % of children diagnosed with cancer will be cured. However, many of these survivors go on to develop long-term health problems or late effects related to their previous cancer and therapy and require varying degrees of lifelong follow-up care. The purpose of this study was to identify the different ways that adult survivors of childhood cancer manage their medical and psychological challenges. METHODS: Data from in-depth interviews with 30 adult survivors of a childhood cancer (9 to 38 years after diagnosis, currently 22 to 43 years of age, 60 % women) were analyzed using qualitative, thematic narrative analysis methods. RESULTS: The survivors had not expected the medical, psychological, and social challenges that arose over time and that often remained unresolved. Five narrative themes revealed distinct ways that survivors managed their health challenges: (1) trying to forget cancer, (2) trusting the system to manage my follow-up care, (3) being proactive about my health, (4) stumbling from one problem to the next, and (5) struggling to find my way. CONCLUSIONS: Variation exists in the ways in which childhood cancer survivors frame their health, their perceived significance of health challenges, strategies used to manage health, interactions with healthcare professionals and the health system, and parental involvement. IMPLICATIONS FOR CANCER SURVIVORS: This research provides novel insights that can be used to inform the development of patient-centered health services that promote the assessment and tailoring of care to the diverse ways survivors enact their agency, as well as their psychoeducational coping styles, therapeutic relationship needs, and information needs.
2016-08
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s11764-016-0517-8" target="_blank" rel="noreferrer">10.1007/s11764-016-0517-8</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).
Type
The nature or genre of the resource
Journal Article
2016
Backlog
Childhood Cancer Survivor
Goddard K
Health Services
Howard AF
Journal Article
Journal Of Cancer Survivorship: Research And Practice
Kazanjian A
Narrative research
Olson R
Patient Perspective
Pritchard S
Qualitative
Tan de Bibiana J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.4172/2165-7386.1000214" target="_blank" rel="noreferrer">http://doi.org/10.4172/2165-7386.1000214</a>
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Title
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Pediatric Oncology Palliative Care: Experiences of General Practitioners and Bereaved Parents
Publisher
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Journal Of Palliative Care & Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Palliative Care; Children; cancer; oncology; Qualitative; General practitioners
Creator
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Neilson SJ; Gibson F; Greenfield SM
Description
An account of the resource
OBJECTIVE: This qualitative study set in the West Midlands region of the United Kingdom, aimed to examine the role of the general practitioner (GP) in children's oncology palliative care from the perspective of GPs who had cared for a child with cancer receiving palliative care at home and bereaved parents. METHODS: One-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents following the death. A grounded theory data analysis was undertaken; identifying generated themes through chronological comparative data analysis. RESULTS: Similarity in GP and parent viewpoints was found, the GPs role seen as one of providing medication and support. Time pressures GPs faced influenced their level of engagement with the family during palliative and bereavement care and their ability to address their identified learning deficits. Lack of familiarity with the family, coupled with an acknowledgment that it was a rare and could be a frightening experience, also influenced their level of interaction. There was no consistency in GP practice nor evidence of practice being guided by local or national policies. Parents lack of clarity of their GPs role resulted in missed opportunities for support. CONCLUSIONS: Time pressures influence GP working practices. Enhanced communication and collaboration between the GP and regional childhood cancer centre may help address identified GP challenges, such as learning deficits, and promote more time-efficient working practices through role clarity. Parents need greater awareness of their GP's wide-ranging role; one that transcends palliative care incorporating bereavement support and on-going medical care for family members.
2015-03
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.4172/2165-7386.1000214" target="_blank" rel="noreferrer">10.4172/2165-7386.1000214</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).
Type
The nature or genre of the resource
Journal Article
2015
Backlog
Cancer
Children
General practitioners
Gibson F
Greenfield SM
Journal Article
Journal Of Palliative Care & Medicine
Neilson SJ
Oncology
Palliative Care
Qualitative
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Palliative Care In The Neonatal Unit: Neonatal Nursing Staff Perceptions Of Facilitators And Barriers In A Regional Tertiary Nursery
Publisher
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Bmc Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Palliative Care; Neonatal; Facilitators; Barriers; Regional Location; Qualitative
Creator
An entity primarily responsible for making the resource
Kilcullen M; Ireland S
Description
An account of the resource
Background Neonatology has made significant advances in the last 30 years. Despite the advances in treatments, not all neonates survive and a palliative care model is required within the neonatal context. Previous research has focused on the barriers of palliative care provision. A holistic approach to enhancing palliative care provision should include identifying both facilitators and barriers. A strengths-based approach would allow barriers to be addressed while also enhancing facilitators. The current study qualitatively explored perceptions of neonatal nurses about facilitators and barriers to delivery of palliative care and also the impact of the regional location of the unit. Methods The study was conducted at the Townsville Hospital, which is the only regional tertiary neonatal unit in Australia. Semi-structured interviews were conducted with a purposive sample of eight neonatal nurses. Thematic analysis of the data was conducted within a phenomenological framework. Results Six themes emerged regarding family support and staff factors that were perceived to support the provision of palliative care of a high quality. Staff factors included leadership, clinical knowledge, and morals, values, and beliefs. Family support factors included emotional support, communication, and practices within the unit. Five themes emerged from the data that were perceived to be barriers to providing quality palliative care. Staff perceived education, lack of privacy, isolation, staff characteristics and systemic (policy, and procedure) factors to impact upon palliative care provision. The regional location of the unit also presented unique facilitators and barriers to care. Conclusions This study identified and explored facilitators and barriers in the delivery of quality palliative care for neonates in a regional tertiary setting. Themes identified suggested that a strengths-approach, which engages and amplifies facilitating factors while identified barriers are addressed or minimized, would be successful in supporting quality palliative care provision in the neonatal care setting. Study findings will be used to inform clinical education and practice.
Identifier
An unambiguous reference to the resource within a given context
10.1186/s12904-017-0202-3
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).
2017
Barriers
BMC Palliative Care
Facilitators
Ireland S
July 2017 List
Kilcullen M
Neonatal
Palliative Care
Qualitative
Regional Location
-
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
August 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Parents' Experience Of A Follow-up Meeting After A Child's Death In The Paediatric Intensive Care Unit.
Publisher
An entity responsible for making the resource available
Intensive And Critical Care Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Fundin Intensive Care Nursing Nurses Meetings Intervention Parents & Parenting Studies Interviews Families & Family Life Interdisciplinary Aspects Hospitals
Child Death; Follow-up; Picu; Paediatric Intensive Care; Parent's Experience; Qualitative
Creator
An entity primarily responsible for making the resource
HL Brink
Description
An account of the resource
OBJECTIVE:
'To identify parents' experience of a follow up meeting and to explore whether the conversation was adequate to meet the needs of parents for a follow-up after their child's death in the Paediatric Intensive Care Unit (PICU).
DESIGN AND SETTING:
Qualitative method utilising semi-structured interviews with six pairs of parents 2-12 weeks after the follow-up conversation. The interviews were held in the parents' homes at their request. Data were analysed using a qualitative, descriptive approach and thematic analysis.
FINDINGS:
Four main themes emerged: (i) the way back to the PICU; (ii) framework; (iii) relations and (iv) closure.
CONCLUSION:
The parents expressed nervousness before the meeting, but were all pleased to have participated in these follow-up meetings. The parents found it meaningful that the follow-up meeting was interdisciplinary, since the parents could have answers to their questions both about treatment and care. It was important that the staff involved in the follow-up meeting were those who had been present through the hospitalisation and at the time of the child's death. Parents experienced the follow-up meeting as being a closure of the course in the PICU, regardless the length of the hospitalisation.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1016/j.iccn.2016.06.006
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
August 2016 List
Child Death
Follow-up
Fundin Intensive Care Nursing Nurses Meetings Intervention Parents & Parenting Studies Interviews Families & Family Life Interdisciplinary Aspects Hospitals
HL Brink
Intensive and Critical Care Nursing
Paediatric Intensive Care
Parent's Experience
Picu
Qualitative
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
A Qualitative Study Of Nurse Observations Of Symptoms In Infants At End-of-life In The Neonatal Intensive Care Unit
Publisher
An entity responsible for making the resource available
Intensive And Critical Care Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
End-of-life Care; Infant; Neonatal Intensive Care Unit; Qualitative; Symptoms
Creator
An entity primarily responsible for making the resource
Fortney CA; Steward DK
Identifier
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10.1016/j.iccn.2016.10.004
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).
2017
April 2017 List
End-of-life Care
Fortney CA
Infant
Intensive and Critical Care Nursing
Neonatal Intensive Care Unit
Qualitative
Steward DK
Symptoms
-
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
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The Development And Evaluation Of A Holistic Needs Assessment Within Children’s Palliative Care.
Publisher
An entity responsible for making the resource available
International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Child; Holistic Nursing; Humans; Needs Assessment; Palliative Care; Pilot Projects
Assessment; Holistic; Pediatrics; Palliative; Qualitative
Creator
An entity primarily responsible for making the resource
Hartley G; Berger Z; Maynard L
Description
An account of the resource
Caring for a child with a life-limiting condition brings a number of challenges and many families require additional support. The need for services to move away from a 'one size fits all' approach to a personalised care planning approach is well recognised, as is the value of establishing a robust way of assessing family members' differing needs. A number of assessment tools that consider individuals' holistic needs already exist. These are predominantly for the adult cancer population and exclude consideration of the child in its system. There was therefore a need to develop a tool that would appropriately meet the needs of children and parents who access services provided by a children's hospice. The tool was evaluated qualitatively. Feedback was positive; the experience of professionals was one of concordance with their ethical stance, improved communication, improved documentation and the wish to embed the tool into daily practice.
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Assessment
Berger Z
Child
Hartley G
Holistic
Holistic Nursing
Humans
International Journal of Palliative Nursing
May 2016 List
Maynard L
Needs Assessment
Palliative
Palliative Care
Pediatrics
Pilot Projects
Qualitative
-
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
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Parental Physical Proximity In End-of- Life Care In The Picu.
Publisher
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
End Of Life Care; Patient; Quality; Unit; Pediatric Palliative Care; Perspectives; Cancer; Critical Care Medicine; Qualitative; Family; Intensive Care; Childs Death; Pediatric Intensive-care; Priorities; Pediatrics; Parenting
Creator
An entity primarily responsible for making the resource
Falkenburg JL; Tibboel D; Ganzevoort RR; Gischler S; Hagoort J; van Dijk M
Description
An account of the resource
OBJECTIVE:
Health professionals in PICUs support both child and parents when a child's death is imminent. Parents long to stay connected to their dying child but the high-tech environment and treatment implications make it difficult to stay physically close. This study explores in what sense physical aspects of end-of-life care in the PICU influence the parent-child relationship.
DESIGN:
Retrospective, qualitative interview study.
SETTING:
Level 3 PICU in Erasmus Medical Center in the Netherlands.
PARTICIPANTS:
Thirty-six parents of 20 children who had died in this unit 5 years previously.
MEASUREMENTS AND MAIN RESULTS:
Parents vividly remembered the damage done to the child's physical appearance, an inevitable consequence of medical treatment. They felt frustrated and hurt when they could not hold their child. Yet they felt comforted if facilitated to be physically close to the dying child, like lying with the child in one bed, holding the child in the hour of death, and washing the child after death.
CONCLUSIONS:
End-of-life treatment in the PICU presents both a barrier and an opportunity for parents to stay physically connected to their child. Parents' experiences suggest that aspects of physicality in medical settings deserve more attention. Better understanding of the significance of bodily aspects-other than pain and symptom management-improves end-of-life support and should be part of the humane approach to families.
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Cancer
Childs Death
Critical Care Medicine
End Of Life Care
Falkenburg JL
Family
Ganzevoort RR
Gischler S
Hagoort J
Intensive Care
May 2016 List
Parenting
Patient
Pediatric Critical Care Medicine
Pediatric Intensive-care
Pediatric Palliative Care
Pediatrics
Perspectives
Priorities
Qualitative
Quality
Tibboel D
Unit
van Dijk M
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Lived Experiences Of Parents Caring For A Child With A Life-limiting Condition In Australia: A Qualitative Study.
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Illness; Pediatric Palliative Care; Impact; Services; Cancer; Families; Support; Of-life; Public; Public Environmental & Occupational Health; Caregivers; Medicine General & Internal; Health Care Sciences & Services; Threatening Conditions
Pediatric Palliative Care; Caregiver; Experiences; Life-limiting Conditions; Qualitative
Creator
An entity primarily responsible for making the resource
Collins A; Hennessy-Anderson N; Hosking S; Hynson J; Remedios C; Thomas K
Description
An account of the resource
BACKGROUND:
Experiential studies in paediatric palliative care are needed to enable an ongoing international agenda which supports the development of responsive family supports.
AIM:
To provide an in-depth exploration of the prevalent lived experiences of parents who are currently providing care for a child with a life-limiting condition in Australia.
DESIGN:
Cross-sectional, prospective, qualitative study guided by an advisory group and reported according to the consolidated criteria for reporting qualitative studies. Transcripts were subjected to a thematic analysis, underpinned by an interpretative phenomenological framework.
SETTING/PARTICIPANTS:
Purposively sampled parents (n = 14) recruited from a statewide paediatric hospice who self-identified as a 'primary caregiver' for one or more children and/or adolescents (⩽18 years) with a life-limiting condition.
RESULTS:
Four key themes represented the prevalent experiences of parents: (1) trapped inside the house, (2) the protector, (3) living with the shadow and (4) travelling a different pathway. They describe parents' physical and social isolation, exclusion from the workforce, pervasive grief and associated impacts to their health and well-being. Limited professional and diminished social supports resulted in full ownership of care responsibility. Yet, parents embraced their role as 'protector', reporting acquired meaning and purpose.
CONCLUSION:
This study builds upon the growing body of evidence available in paediatric palliative care internationally. The key themes highlight the substantial demand for both physical and emotional support beyond what is currently offered and call for the implementation of carefully planned support services and other societal initiatives which seek to alleviate the broad health impacts to caregivers.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1177/0269216316634245
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Cancer
Caregiver
Caregivers
Collins A
Experiences
Families
Health Care Sciences & Services
Hennessy-Anderson N
Hosking S
Hynson J
Illness
Impact
Journal of Palliative Medicine
Life-limiting Conditions
March 2016 List
Medicine General & Internal
Of-life
Pediatric Palliative Care
Public
Public Environmental & Occupational Health
Qualitative
Remedios C
Services
Support
Thomas K
Threatening Conditions
-
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
August 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Exploring The Spiritual Needs Of Families With Seriously Ill Children
Publisher
An entity responsible for making the resource available
International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adolescent; Child; Cultural Characteristics; Family/psychology; Female; Humans; Male; Needs Assessment; Nursing Assessment; Palliative Care; Professional-family Relations; Qualitative Research; Spirituality
Nursing; Spirituality; Pediatrics; Palliative Care; Qualitative
Creator
An entity primarily responsible for making the resource
Ferrell B
Description
An account of the resource
Although we know that families of seriously ill children experience spiritual distress, especially at the end of the child's life, there is little information on the specific spiritual needs of families. In order to develop further training for nurses in paediatrics and help nurses develop skills for communicating about spirituality, this research examined the spiritual needs of families based on nurses' experiences with families of seriously ill children. Nurses' experiences revealed that families' anger with God, blame/regret, forgiveness, and ritual and cultural traditions are salient spiritual needs requiring effective nurse communication skills to support families of ill children.
Identifier
An unambiguous reference to the resource within a given context
http://dx.doi.org/10.12968/ijpn.2016.22.8.388
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Adolescent
August 2016 List
Child
Cultural Characteristics
Family/psychology
Female
Ferrell B
Humans
International Journal of Palliative Nursing
Male
Needs Assessment
Nursing
Nursing Assessment
Palliative Care
Pediatrics
Professional-family Relations
Qualitative
Qualitative Research
Spirituality