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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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January 2018 List
Text
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Citation List Month
January 2018 List
URL Address
<a href="http://doi.org/10.1186/s12904-017-0268-y" target="_blank" rel="noreferrer">http://doi.org/10.1186/s12904-017-0268-y</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Study protocol: evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH study) - work package II: palliative care for pediatric patients
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
2018
Subject
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Mixed methods; Needs assessment; Palliative care; Pediatrics; Qualitative research
Creator
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Ulrich LR; Gruber D; Hach M; Boesner S; Haasenritter J; Kuss K; Seipp H; Gerlach FM; Erler A
Description
An account of the resource
BACKGROUND: In 2007, the European Association of Palliative Care (EAPC) provided a comprehensive set of recommendations and standards for the provision of adequate pediatric palliative care. A number of studies have shown deficits in pediatric palliative care compared to EAPC standards. In Germany, pediatric palliative care patients can be referred to specialized outpatient palliative care (SOPC) services, which are known to enhance quality of life, e.g. by avoiding hospitalization. However, current regulations for the provision of SOPC in Germany do not account for the different circumstances and needs of children and their families compared to adult palliative care patients. The "Evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH)" study aims to perform a needs assessment for pediatric patients (children, adolescents and young adults) receiving SOPC. This paper presents the study protocol for this assessment (work package II). METHODS/DESIGN: The study uses a sequential mixed-methods study design with a focus on qualitative research. Data collection from professional and family caregivers and, as far as possible, pediatric patients, will involve both a written questionnaire based on European recommendations for pediatric palliative care, and semi-structured interviews. Additionally, professional caregivers will take part in focus group discussions and participatory observations. Interviews and focus groups will be tape- or video-recorded, transcribed verbatim and analyzed in accordance with the principles of grounded theory (interviews) and content analysis (focus groups). A structured field note template will be used to record notes taken during the participatory observations. Statistical Package for Social Sciences (SPSS, version 22 or higher) will be used for descriptive statistical analyses. The qualitative data analyses will be software-assisted by MAXQDA (version 12 or higher). DISCUSSION: This study will provide important information on what matters most to family caregivers and pediatric patients receiving SOPC. The results will add valuable knowledge to the criteria that distinguish SOPC for pediatric from SOPC for adult patients, and will provide an indication of how the German SOPC rule of procedure can be optimized to satisfy the special needs of pediatric patients. TRIAL REGISTRATION: Internet Portal of the German Clinical Trials Register ( www.germanctr.de , DRKS-ID: DRKS00012431).
Identifier
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<a href="http://doi.org/10.1186/s12904-017-0268-y" target="_blank" rel="noreferrer">10.1186/s12904-017-0268-y</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
BMC Palliative Care
Boesner S
Erler A
Gerlach FM
Gruber D
Haasenritter J
Hach M
January 2018 List
Kuss K
Mixed methods
Needs Assessment
Palliative Care
Pediatrics
Qualitative Research
Seipp H
Ulrich LR
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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February 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
February 2022 List
URL Address
<a href="http://doi.org/10.1177/02692163211065294" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/02692163211065294</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Care practices of specialized outpatient pediatric palliative care teams in collaboration with parents: Results of participatory observations
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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pediatrics; communication; Palliative care; parents; qualitative research; ambulatory care
Creator
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Schuetze D; Ploeger C; Hach M; Seipp H; Kuss K; Bösner S; Gerlach FM; van den Akker M; Erler A; Engler J
Description
An account of the resource
BACKGROUND: Collaboration between parents and professional care providers is an essential part of pediatric palliative care. As children are embedded in family systems and many of the patients are not able to communicate verbally, their parents are the primary interaction partners for palliative care providers. International standards for pediatric palliative care in Europe state that parents should be supported, acknowledged as the primary carers and involved as partners in all care and decisions. AIM: To find out through which care practices pediatric palliative care teams shape collaboration with parents in everyday care. DESIGN: Ethnographic method of participatory observations. Field notes were analyzed using thematic analysis. SETTING/PARTICIPANTS: Researchers accompanied three pediatric palliative care teams on home visits to eight different families caring for a child with life-limiting conditions. RESULTS: Care practices of palliative care teams were characterized by familiarity, a resource-oriented attitude, empowerment of parents, shared decision-making and support for parents. Palliative care teams not only provided palliative medical treatment for the children, but also developed a trusting care partnership with parents. The teams employed a sensitive and multifaceted communication style in their collaboration with parents. CONCLUSIONS: Care practices in pediatric palliative care require time, communication skills, and a high level of psychosocial competence, to develop a trusting, collaborative relationship with parents. This should be taken into consideration when establishing pediatric palliative care structures, preparing guidelines, training staff, and deciding upon appropriate remuneration.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/02692163211065294" target="_blank" rel="noreferrer noopener">10.1177/02692163211065294</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).
2021
Ambulatory Care
Bösner S
Communication
Engler J
Erler A
February 2022 List
Gerlach FM
Hach M
Kuss K
Palliative Care
Palliative Medicine
Parents
Pediatrics
Ploeger C
Qualitative Research
Schuetze D
Seipp H
van den Akker M
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Special Edition #1 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 #1 2022 List
URL Address
<a href="http://doi.org/10.1089/jpm.2019.0245" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2019.0245</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Parents' Perspectives on Hospital Care for Children and Adolescents with Life-Limiting Conditions: A Grounded Theory Analysis of Narrative Interviews
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
2019
Subject
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pediatrics; palliative care; hospitals; parents; qualitative research; ambulatory care
Creator
An entity primarily responsible for making the resource
Engler J; Gruber D; Engler F; Hach M; Seipp H; Kuss K; Gerlach FM; Ulrich LR; Erler A
Description
An account of the resource
Background: Guidelines on pediatric palliative care recommend to provide care for children and adolescents with life-limiting conditions at home. Since 2007, in Germany, palliative home care can be provided by specialized outpatient palliative care teams. However, teams with specific expertise for children are not available all over the country. Families without this support need to use the hospital to get specialists' assistance. Objective: To explore how parents of children and adolescents with life-limiting conditions think about the hospital as place of care. Design: We conducted narrative interviews with parents and analyzed these by using a grounded theory approach. Setting/Subjects: We interviewed 13 parents (4 fathers and 9 mothers) of 9 children with life-limiting conditions receiving or having received pediatric specialized outpatient palliative care (SOPPC) in Germany. Results: Parents reported feelings of vulnerability, heteronomy, and disablement associated with hospital care and were afraid that their children's needs were not adequately addressed. These perceptions resulted from hospitals' standardized care structures and over- and undertreatment, a lack of continuity of care, hospital pathogens, a lack of a palliative mindset, insensitive hospital staff, the exclusion of parents from the treatment and parental care of their children, the hospital stay as a permanent state of emergency, and a waste of limited life time. Conclusion: Pediatric hospital staff needs training in identifying and responding to palliative care needs. SOPPC structures should be expanded all over Germany to meet the needs of families of children with life-limiting conditions.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2019.0245" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0245</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
2022 Special Edition 1 - Parent Perspectives
Ambulatory Care
Engler F
Engler J
Erler A
Gerlach FM
Gruber D
Hach M
Hospitals
Journal of Palliative Medicine
Kuss K
Palliative Care
Parents
Pediatrics
Qualitative Research
Seipp H
Ulrich LR