1
40
36
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Dublin Core
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Title
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February 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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February List 2024
URL Address
<a href="http://doi.org/10.1007/s00431-023-05314-4" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00431-023-05314-4</a>
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Title
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Barriers to the spiritual care of parents taking care of their child with a life-limiting condition at home
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European Journal of Pediatrics
Date
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2023
Subject
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Parents; Palliative care; Grief; Spirituality; Child care; Focus groups
Creator
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Brouwer MA; Bas-Douw BC; Leget CJW; Engel M; Teunissen Sccm; Kars MC
Description
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The changes that parents face when caring for a child with a life-limiting condition at home can affect them on a spiritual level. Yet, indications remain that parents do not feel supported when dealing with spiritual issues related to caring for a severely ill child. This paper explores, from the perspectives of bereaved parents, chaplains, grief counselors, and primary health care providers, the barriers to supporting the spiritual needs of parents. We conducted a qualitative focus group study from a constructivist point with chaplains/grief counselors, primary care professionals, and bereaved parents. All groups participated in two consecutive focus group sessions. Data were thematically analyzed. Six chaplains/grief counselors, 6 care professionals, and 5 parents participated. We identified six barriers: (1) There were difficulties in identifying and communicating spiritual care needs. (2) The action-oriented approach to health care hinders the identification of spiritual care needs. (3) There is an existing prejudice that spiritual care needs are by nature confrontational or difficult to address. (4) Spiritual support is not structurally embedded in palliative care. (5) There is a lack of knowledge and misconceptions about existing support. (6) Seeking out spiritual support is seen as too demanding. CONCLUSION: Parents of children with life-limiting conditions face existential challenges. However, care needs are often not identified, and existing support is not recognized as such. The main challenge is to provide care professionals and parents with the tools and terminology that suit existing care needs. WHAT IS KNOWN: • Spiritual care needs are an important aspect of pediatric palliative care. • Parents of children with life-limiting conditions feel unsupported when dealing with spiritual questions. WHAT IS NEW: • Parents and professionals mention barriers that hinder spiritual support for parents. • There is a disconnect between existing support and the care needs that parents have.
Identifier
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<a href="http://doi.org/10.1007/s00431-023-05314-4" target="_blank" rel="noreferrer noopener">10.1007/s00431-023-05314-4</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Bas-Douw BC
Brouwer MA
Child Care
Engel M
European Journal of Pediatrics
February List 2024
Focus Groups
Grief
Kars MC
Leget CJW
Palliative Care
Parents
Spirituality
Teunissen SCCM
-
Dublin Core
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Title
A name given to the resource
2023 Special Edition 4 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE4 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1177/13674935030074001" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/13674935030074001</a>
Dublin Core
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Title
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Differences and similarities between mothers' and fathers' experiences of parenting a child with a disability.
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
2003
Subject
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Humans; Child; Child, Preschool; Female; Male; Middle Aged; Parent-Child Relations; Communication; Adult; Qualitative Research; Gender Identity; Adaptation, Psychological; Focus Groups; Nursing Methodology Research; *Attitude to Health; *Disabled Children/px [Psychology]; Early Intervention, Educational; *Fathers/px [Psychology]; Stereotyping; Marriage/px [Psychology]; *Mothers/px [Psychology]; *Parenting/px [Psychology]; *Down Syndrome/px [Psychology]; Disabled Children/rh [Rehabilitation]; Down Syndrome/rh [Rehabilitation]
Creator
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Pelchat, Diane; Lefebvre, Helene; Perreault, Michel
Description
An account of the resource
This qualitative study used focus groups to identify the differences and similarities in the experiences of parents of children with a disability. Two main themes emerged, showing the ways in which the mothers and fathers are alike or different. One concerns roles, actual and expected, in the various subsystems of family life. The other concerns the normalization and stigmatization that arise because of the child's problem. Mothers tend to score better in terms of interpersonal and group communications. It would seem that the fathers' expectations are harder to fulfil than the mothers'. The fathers' expectations are attuned to the outer world; the actual day-to-day tasks related to the child's care are not their priority. The mothers are less demanding and their expectations are more self-focused. Interestingly, these families are similar to families of children without a disability; however, the difficulties they experience are accentuated by the presence of a child with a problem.
Identifier
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<a href="http://doi.org/10.1177/13674935030074001" target="_blank" rel="noreferrer noopener">10.1177/13674935030074001</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
*Attitude to Health
*Disabled Children/px [Psychology]
*Down Syndrome/px [Psychology]
*Fathers/px [Psychology]
*Mothers/px [Psychology]
*Parenting/px [Psychology]
2003
2023 SE4 - Parent Perspectives
Adaptation, Psychological
Adult
Child
Child, Preschool
Communication
Disabled Children/rh [Rehabilitation]
Down Syndrome/rh [Rehabilitation]
Early Intervention, Educational
Female
Focus Groups
Gender Identity
Humans
Journal Of Child Health Care
Lefebvre, Helene
Male
Marriage/px [Psychology]
Middle Aged
Nursing Methodology Research
Parent-child Relations
Pelchat, Diane
Perreault, Michel
Qualitative Research
Stereotyping
-
Dublin Core
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Title
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September 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September List 2023
URL Address
<a href="http://doi.org/10.12968/bjom.2023.31.7.368%5C"> http://doi.org/10.12968/bjom.2023.31.7.368\</a>"
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Title
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Max's legacy: an evaluation of the impacts of baby loss on staff and families
Publisher
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British Journal of Midwifery
Date
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2023
Subject
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Female; Descriptive Research; Human; Thematic Analysis; Bereavement; Family Attitudes; Semi-Structured Interview; Abortion, Spontaneous; After Care; Attitude of Health Personnel; Focus Groups; Multimethod Studies; Pregnancy Trimester, First; Pregnancy; Safety; United Kingdom
Creator
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Whitehouse C; Crane R; Rostron H; Cater K
Description
An account of the resource
Background/Aims There is a paucity of literature on the impact of baby loss experiences on family and staff. This study aimed to explore existing support available to families and staff in a UK hospital for first trimester miscarriage, as well as experiences of baby loss, and make recommendations for future care. Methods A mixed-methods service evaluation was conducted. Data were gathered from healthcare professionals (surveys, phase 1; interviews, phase 2) and service users who had experienced baby loss (focus group discussions, phase 3). Qualitative data were analysed thematically, alongside descriptive quantitative results. Results Communication, support, recognition of loss and environment were key contributors to positive and negative experiences for staff and families. Peer support enhanced communication, reduced isolation and increased ability to function on a daily basis following loss. Conclusions Formal, resourced maternity bereavement aftercare services are essential to the support the experiences, outcomes and safety of staff and families experiencing baby loss and miscarriage.
Identifier
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<a href="http://doi.org/10.12968/bjom.2023.31.7.368%5C">10.12968/bjom.2023.31.7.368\</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
Abortion, Spontaneous
After Care
Attitude Of Health Personnel
Bereavement
British Journal of Midwifery
Cater K
Crane R
Descriptive Research
Family Attitudes
Female
Focus Groups
Human
Multimethod Studies
Pregnancy
Pregnancy Trimester, First
Rostron H
Safety
Semi-Structured Interview
September List 2058
Thematic Analysis
United Kingdom
Whitehouse C
-
Dublin Core
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Title
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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/10.1177/1367493520936422" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1367493520936422</a>
Dublin Core
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Title
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A confident parent breeds a confident child': Understanding the experience and needs of parents whose children will transition from paediatric to adult care
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
2020
Subject
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chronic disease; focus groups; parents; transitional care
Creator
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Shaw KL; Baldwin L; Heath G
Description
An account of the resource
Transitional care for young people with long-term conditions emphasizes the importance of supporting parents, particularly in relation to promoting adolescent healthcare autonomy. Yet, little practical guidance is provided, and transitional care remains suboptimal for many families. This study aimed to examine how parents understand and experience their caregiving role during their child's transition to adult services, to identify parents' needs, and to inform service improvements. Focus groups were undertaken with parents of young people with brittle asthma, osteogenesis imperfecta, or epilepsy. Data were analysed using interpretative phenomenological analysis. Participants (n = 13) described how their parenting roles extended beyond what they consider usual in adolescence. These roles were presented as time consuming, stressful, and unrelenting but necessary to protect children from harm in the face of multiple risks and uncertainties. Such protective strategies were also perceived to hinder adolescent development, family functioning, and their own development as midlife adults. Finding a balance between protecting immediate health and long-term well-being was a major theme. Participants called for improved support, including improved service organization. Recommendations are provided for working with parents and young people to manage the risks and uncertainties associated with their condition, as part of routine transitional care. Copyright © The Author(s) 2020.
Identifier
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<a href="http://doi.org/10.1177/1367493520936422" target="_blank" rel="noreferrer noopener">10.1177/1367493520936422</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
2022 Special Edition 2 - Parent Perspectives
Baldwin L
Chronic Disease
Focus Groups
Heath G
Journal of Child Health Care.
Parents
Shaw KL
Transitional Care
-
Dublin Core
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Title
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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/10.1177/1049909119895496" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909119895496</a>
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Title
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Experiences at the End of Life From the Perspective of Bereaved Parents: Results of a Qualitative Focus Group Study
Publisher
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American Journal of Hospice and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Adult; Bereavement; cancer; child; communication; end of life; Focus Groups; Hospice Care; Humans; palliative care; Parents; Professional-Family Relations; Quality of Life; Time Factors
Creator
An entity primarily responsible for making the resource
Sedig LK; Spruit JL; Paul TK; Cousino MK; Pituch K; Hutchinson R
Description
An account of the resource
BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by families receiving end-of-life care. We report the most helpful aspects of care provided during the end of life and identify opportunities to improve care delivery during this critical time. METHODS: This study consists of 2 one-hour focus group sessions with 6 participants each facilitated by a clinical psychologist to explore the experiences of bereaved parents of pediatric oncology patients at the end of their child's life. The data were transcribed and coded using constant comparative analysis and evaluated for inter-rater reliability using intraclass correlation coefficient. RESULTS: Four common themes were identified through qualitative analysis: (1) valued communication qualities, (2) valued provider qualities, (3) unmet needs, and (4) parental experiences. The most prevalent of these themes was unmet needs (mentioned 51 times). Subthemes were identified and evaluated. Parents described struggling with communication from providers, loss of control in the hospital environment, and challenges associated with transition of care to hospice services. CONCLUSION: Interventions that support the complex needs of a family during end-of-life care are needed, especially with regard to coordination of care.
Identifier
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<a href="http://doi.org/10.1177/1049909119895496" target="_blank" rel="noreferrer noopener">10.1177/1049909119895496</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
2022 Special Edition 2 - Parent Perspectives
Adult
American Journal Of Hospice And Palliative Care
Bereavement
Cancer
Child
Communication
Cousino MK
End Of Life
Focus Groups
Hospice Care
Humans
Hutchinson R
Palliative Care
Parents
Paul TK
Pituch K
Professional-family Relations
Quality Of Life
Sedig LK
Spruit JL
Time Factors
-
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Title
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May 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
May 2022 List
URL Address
<a href="http://doi.org/10.1177/11786329221078124" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/11786329221078124</a>
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interRAI Pediatric Home Care (PEDS-HC) Assessment Tool: Evaluating Ontario Healthcare Workers’ Experience
Publisher
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Health Services Insights
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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focus groups; Home care services; needs assessment; pediatrics
Creator
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Lynch-Godrei A; Doherty M; Vadeboncoeur C
Description
An account of the resource
High quality pediatric homecare requires comprehensive assessment of the needs, supports, and health care challenges of children with special healthcare needs and their families. There is no standardized homecare assessment system to evaluate children’s clinical needs in the home (support services, equipment, etc.) in Ontario, Canada, which contributes to inequitable homecare service allocation. In 2017, the interRAI Pediatric Home Care assessment tool (PEDS-HC) was implemented on a pilot basis in several regions of Ontario. This qualitative descriptive study explores the experiences of homecare coordinators using the PEDS-HC, seeking to understand the utility and feasibility of this tool through focus group discussion. Four major themes were identified including: the benefits of the tool; areas for modification; challenges to use; and Clinical Assessment Protocols to develop. These themes can guide modifications to the tool to improve utility and improve pediatric home care services. The PEDS-HC is an effective tool to assess children needing homecare in a standardized and comprehensive manner. Use of the tool can improve the quality of homecare services by ensuring equity in service provision and facilitate early identification of clinical issues to prevent unexpected health deteriorations.
Identifier
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<a href="http://doi.org/10.1177/11786329221078124" target="_blank" rel="noreferrer noopener">10.1177/11786329221078124</a>
2022
Doherty M
Focus Groups
Health Services Insights
home care services
Lynch-Godrei A
May 2022 List
Needs Assessment
Pediatrics
Vadeboncoeur C
-
Dublin Core
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Title
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April 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
April 2022 List
URL Address
<a href="http://doi.org/10.3390/medicina58020250" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/medicina58020250</a>
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End-of-Life Decision-Making in Pediatric and Neonatal Intensive Care Units in Croatia-A Focus Group Study among Nurses and Physicians
Publisher
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Medicina (Kaunas)
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Infant Newborn; Intensive Care Units Neonatal; Physicians; Terminal Care; Adult; Child; critical care; Croatia; Death; Decision Making; end-of-life; focus groups; Focus Groups; Humans; Intensive Care Units; neonatal intensive care unit; nurses; pediatric intensive care unit; physicians
Creator
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Rubic F; Curkovic M; Brajkovic L; Nevajdic B; Novak M; Filipovic-Grcic B; Mestrovic J; Lah Tomulic K; Peter B; Borovecki A
Description
An account of the resource
Background and Objectives: Working in pediatric and neonatal intensive care units (ICUs) can be challenging and differs from work in adult ICUs. This study investigated for the first time the perceptions, experiences and challenges that healthcare professionals face when dealing with end-of-life decisions in neonatal intensive care units (NICUs) and pediatric intensive care units (PICUs) in Croatia. Materials and Methods: This qualitative study with focus groups was conducted among physicians and nurses working in NICUs and PICUs in five healthcare institutions (three pediatric intensive care units (PICUs) and five neonatal intensive care units (NICUs)) at the tertiary level of healthcare in the Republic of Croatia, in Zagreb, Rijeka and Split. A total of 20 physicians and 21 nurses participated in eight focus groups. The questions concerned everyday practices in end-of-life decision-making and their connection with interpersonal relationships between physicians, nurses, patients and their families. The constant comparative analysis method was used in the analysis of the data. Results: The analysis revealed two main themes that were the same among the professional groups as well as in both NICU and PICU units. The theme "critical illness" consisted of the following subthemes: the child, the family, myself and other professionals. The theme "end-of-life procedures" consisted of the following subthemes: breaking point, decision-making, end-of-life procedures, "spill-over" and the four walls of the ICU. The perceptions and experiences of end-of-life issues among nurses and physicians working in NICUs and PICUs share multiple common characteristics. The high variability in end-of-life procedures applied and various difficulties experienced during shared decision-making processes were observed. Conclusions: There is a need for further research in order to develop clinical and professional guidelines that will inform end-of-life decision-making, including the specific perspectives of everyone involved, and the need to influence policymakers.
Identifier
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<a href="http://doi.org/10.3390/medicina58020250" target="_blank" rel="noreferrer noopener">10.3390/medicina58020250</a>
2022
Adult
April 2022 List
Borovecki A
Brajkovic L
Child
Critical Care
Croatia
Curkovic M
Death
Decision Making
end-of-life
Filipovic-Grcic B
Focus Groups
Humans
Infant Newborn
Intensive Care Units
Intensive Care Units Neonatal
Lah Tomulic K
Medicina (Kaunas)
Mestrovic J
Neonatal Intensive Care Unit
Nevajdic B
Novak M
Nurses
Pediatric Intensive Care Unit
Peter B
Physicians
Rubic F
Terminal Care
-
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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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/10.1177/1367493520915134" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1367493520915134</a>
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Title
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Experiencing Place Identity and Place Belongingness at a Children's Hospice: Parents' Perspectives
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
2020
Subject
The topic of the resource
Child; Children’s hospice; Focus Groups; Hospice Care; Hospices; Palliative Care; parent perspective; Parents; place belongingness; place identity
Creator
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Dunbar H; Carter B
Description
An account of the resource
Children's hospices are key players in the provision of palliative care services for families with children with life-limiting conditions (LLCs). However, evidence suggests that some of the negative terminology/language which surrounds the notions of palliative and hospice care may contribute to the lack of uptake of hospice services by families. This article reports two elements of place bonding: parents' experiences of place identity and place belongingness at a children's hospice in a region in England. Underpinned by a constructivist grounded theory methodology, focus groups were undertaken with 24 parents of children with LLCs accessing a children's hospice. Despite initial reservations associated with the identity of the hospice, parents described how and why their view changed and therefore consequently how they were able to experience the hospice differently. This article demonstrates how parents' views of the identity of the hospice change and how the hospice becomes a place where parents experience a sense of belongingness.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1367493520915134" target="_blank" rel="noreferrer noopener">10.1177/1367493520915134</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
2022 Special Edition 1 - Parent Perspectives
Carter B
Child
Children’s hospice
Dunbar H
Focus Groups
Hospice Care
Hospices
Journal Of Child Health Care
Palliative Care
parent perspective
Parents
place belongingness
place identity
-
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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June 2021 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
June 2021 List
URL Address
<a href="http://doi.org/10.1177/02692163211008737" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/02692163211008737</a>
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Title
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Healthcare professionals' views of the use of oral morphine and transmucosal diamorphine in the management of paediatric breakthrough pain and the feasibility of a randomised controlled trial: A focus group study (DIPPER)
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
The topic of the resource
Breakthrough pain; diamorphine; focus groups; opioids; paediatrics; pain management; palliative care; terminal care
Creator
An entity primarily responsible for making the resource
Jamieson L; Harrop E; Johnson M; Liossi C; Mott C; Oulton K; Skene SS; Wong ICK; Howard RF
Description
An account of the resource
Background: Oral morphine is frequently used for breakthrough pain but the oral route is not always available and absorption is slow. Transmucosal diamorphine is administered by buccal, sublingual or intranasal routes, and rapidly absorbed. Aim(s): To explore the perspectives of healthcare professionals in the UK caring for children with life-limiting conditions concerning the assessment and management of breakthrough pain; prescribing and administration of transmucosal diamorphine compared with oral morphine; and the feasibility of a comparative clinical trial. Design/ participants: Three focus groups, analysed using a Framework approach. Doctors, nurses and pharmacists (n = 28), caring for children with life-limiting illnesses receiving palliative care, participated. Result(s): Oral morphine is frequently used for breakthrough pain across all settings; with transmucosal diamorphine largely limited to use in hospices or given by community nurses, predominantly buccally. Perceived advantages of oral morphine included confidence in its use with no requirement for specific training; disadvantages included tolerability issues, slow onset, unpredictable response and unsuitability for patients with gastrointestinal failure. Perceived advantages of transmucosal diamorphine were quick onset and easy administration; barriers included lack of licensed preparations and prescribing guidance with fears over accountability of prescribers, and potential issues with availability, preparation and palatability. Factors potentially affecting recruitment to a trial were patient suitability and onerousness for families, trial design and logistics, staff time and clinician engagement. Conclusion(s): There were perceived advantages to transmucosal diamorphine, but there is a need for access to a safe preparation. A clinical trial would be feasible provided barriers were overcome. Copyright © The Author(s) 2021.
Identifier
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<a href="http://doi.org/10.1177/02692163211008737" target="_blank" rel="noreferrer noopener">10.1177/02692163211008737</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
Breakthrough Pain
diamorphine
Focus Groups
Harrop E
Howard RF
Jamieson L
Johnson M
June 2021 List
Liossi C
Mott C
Opioids
Oulton K
Paediatrics
Pain Management
Palliative Care
Palliative Medicine.
Skene SS
Terminal Care
Wong ICK
-
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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March 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
March 2020 List
URL Address
<a href="http://doi.org/10.1590/2177-9465-EAN-2019-0030" target="_blank" rel="noreferrer noopener">http://doi.org/10.1590/2177-9465-EAN-2019-0030</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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Mothers of angels: (re)living the death of the child as a coping strategy
Publisher
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Anna Nery School Journal of Nursing / Escola Anna Nery Revista de Enfermagem
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Adult; Attitude to Death; Child; Coping; Data Analysis Software; Death -- In Infancy and Childhood; Descriptive Research; Exploratory Research; Focus Groups; Hardiness; Human; Mother-Child Relations; Mothers -- Psychosocial Factors; Qualitative Studies; Thematic Analysis
Creator
An entity primarily responsible for making the resource
Gramazio Soares L; Kuchla É; de Azevedo Mazza V; Gramazio Soares L; Raimondo Ferraz M I; Padilha Mattei A
Description
An account of the resource
Objective: To describe the experiences lived by mothers facing the death of their children. Method: A qualitative, exploratory and descriptive research conducted in Guarapuava-PR, with six participants of the "Marias" group that brings together mothers who lost their children and share their experiences to spontaneously help other women in the process of mourning. Data collection took place from May to August 2017, through a focus group. The speeches were organized by the Iramuteq® software and analyzed according to Creswell. Results: Age ranged from 28 to 40 years old, and most participants were married and catholic. The categories express the need to strengthen bonds and to create ways in which women can express themselves; the importance of the social network to accommodate mourning; the relevance of ethical and humanized care; and group identity as an element to promote resilience. Conclusion and implications for practice: Describing the potentialities and weaknesses in the process of loss and grief enables a qualifying and humanizing care, overcoming care gaps, stimulating the creation of creative and dialogical spaces in maternal care. These results may guide the professional approach by considering the sociocultural context and the risk factors experienced by the mothers, by supporting the development of resilient skills and enabling a humanized and individualized care. Objetivo: Describir las experiencias vivenciadas por las madres frente a la muerte de sus hijos. Método: Investigación descriptiva, exploratoria y cualitativa realizada en Guarapuava-PR, con seis participantes del grupo "Marías" que reúne a madres que perdieron a sus hijos y comparten sus vivencias además de ayudar a otras mujeres espontáneamente en el proceso de duelo. Los datos se recolectaron entre mayo y agosto de 2017, por medio de un grupo focal. Las conversaciones se organizaron por medio del software Iramuteq® y se analizaron según Creswell. Resultados: La edad varió entre 28 y 40 años, y la mayoría de las participantes estaban casadas y eran católicas. Las categorías expresan la necesidad de fortalecer vínculos y de crear medios con los que las mujeres puedan expresarse; la importancia de la red social para sobrellevar el duelo; la relevancia de una atención ética y humanizada y la identidad grupal como elemento promotor de la resiliencia. Conclusión e implicaciones para la práctica: Describir las potencialidades y debilidades en el proceso de pérdida y duelo permite calificar y humanizar el cuidado, superando las lagunas asistenciales y estimulando la creación de espacios creativos y de diálogo en el cuidado materno. Estos resultados pueden orientar el enfoque profesional al considerar el contexto sociocultural y los factores de riesgo que experimentan las madres, apoyando el desarrollo de habilidades resilientes y haciendo posible un cuidado humanizado e individualizado. Objetivo: Descrever as experiências vivenciadas pelas mães frente à morte do filho. Método: Pesquisa descritiva exploratória qualitativa realizada em Guarapuava-PR, junto a seis participantes do grupo "Marias" que reúne mães que perderam seus filhos e compartilham suas vivências além de ajudar outras mulheres espontaneamente no processo de luto. A coleta de dados ocorreu de maio e agosto/2017, por meio de grupo focal. As falas foram organizadas pelo software Iramuteq® e analisada segundo Creswell. Resultados: Idade variou entre 28 a 40 anos, maioria casadas e católicas. As categorias expressam a necessidade fortalecer vínculos e criar meios em que possam se expressar; importância da rede social para acolher o luto; relevância do atendimento ético e humanizado e a identidade grupal como elemento promotor da resiliência. Conclusão e implicações para a prática: Descrever as potencialidades e fragilidades no processo de perda e luto possibilita qualificar e humanizar o cuidado, com a superação de lacunas assistenciais estimulando a criação de espaços criativos e dialógicos no acolhimento materno. Estes resultados podem orientar a abordagem profissional ao considerar o contexto cultural, social e fatores de risco em que as mães vivenciam, ao apoiar o desenvolvimento de habilidades resilientes e possibilitando um cuidado humanizado e individualizado.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1590/2177-9465-EAN-2019-0030" target="_blank" rel="noreferrer noopener">10.1590/2177-9465-EAN-2019-0030</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
Adult
Anna Nery School Journal of Nursing / Escola Anna Nery Revista de Enfermagem
Attitude To Death
Child
Coping
Data Analysis Software
de Azevedo Mazza V
Death -- In Infancy and Childhood
Descriptive Research
Exploratory Research
Focus Groups
Gramazio Soares L
Hardiness
Human
Kuchla É
March 2020 List
Mother-child Relations
Mothers -- Psychosocial Factors
Padilha Mattei A
Qualitative Studies
Raimondo Ferraz M I
Thematic Analysis
-
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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October 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jnn.2019.03.001" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jnn.2019.03.001</a>
Dublin Core
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Title
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Juggling amidst complexity' – Hospice staff's experience of providing palliative care for infants referred from a neonatal unit
Publisher
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Journal of Neonatal Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Human; Qualitative Studies; Infant; England; Attitude of Health Personnel -- Evaluation; Focus Groups; Hospice Care -- In Infancy and Childhood; Hospital Units; Infant Care; Neonatal Nursing; Palliative Care -- In Infancy and Childhood; Referral and Consultation; Thematic Analysis; Work Experiences
Creator
An entity primarily responsible for making the resource
Price J E; Mendizabal-Espinosa R M
Description
An account of the resource
Hospice has been pivotal to children's palliative care provision in the United Kingdom (UK) for more than 3 decades. Some hospices have recently expanded to include care of infants transferred from neonatal units as well as antenatal referrals. Despite developments evidence suggests hospice care is often not offered to parents in neonatal units (NNU). This study examines perspectives of 17 staff from 3 children's hospices regarding the challenges and opportunities caring for infants in hospice. Data was collected from 3 focus groups and analysed using a thematic approach. Findings suggest that hospice staff juggle many complex issues when caring for infants at the end-of-life. Such issues centre round the referral process from hospital services borne from an apparent reluctance of hospital staff to let go, through involving hospice. Education, partnership working, planning for all possible outcomes seems crucial in further developing quality palliative care for infants and their families.
Identifier
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<a href="http://doi.org/10.1016/j.jnn.2019.03.001" target="_blank" rel="noreferrer noopener">10.1016/j.jnn.2019.03.001</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).
2019
Attitude of Health Personnel -- Evaluation
England
Focus Groups
Hospice Care -- In Infancy and Childhood
Hospital Units
Human
Infant
Infant Care
Journal of Neonatal Nursing
Mendizabal-Espinosa R M
Neonatal Nursing
October 2019 List
Palliative Care -- In Infancy and Childhood
Price J E
Qualitative Studies
Referral And Consultation
Thematic Analysis
Work Experiences
-
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/10.12968/ijpn.2014.20.4.165" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2014.20.4.165</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Sharing the care: the key-working experiences of professionals and the parents of life-limited 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
2014
Subject
The topic of the resource
adolescent; Child; Female; Humans; Male; Terminal Care; Great Britain; Adult; Parents; Questionnaires; Middle Aged; Professional-Family Relations; Health Services Needs and Demand; Health Personnel; caregivers; Child Health Services; Focus Groups; Patient Care Planning; Stress; Psychological
Creator
An entity primarily responsible for making the resource
Rodriguez A; King N
Description
An account of the resource
AIMS: To explore the lived experience of caring and care planning for a child with a life-limiting condition (LLC). METHOD: Using van Manen's conceptualisation of hermeneutic phenomenology, three focus groups were conducted with 21 paediatric palliative care professionals, and interviews were conducted with 20 parents of children with LLCs. FINDINGS: Parents' expectations for support were raised by the diagnosis, but the reality could disappoint, which put pressures on professionals. Current service designs with respect to key working did not always coincide with family preferences. Both parents and professionals found that the care journey required them to shift personas to respond to different contexts. CONCLUSIONS: The findings are limited by the sample characteristics, but they provide insight for current policy and practice initiatives. The key worker needs to be mindful of historical care arrangements and be prepared to step into the family 'team' arrangements.
2014-04
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2014.20.4.165" target="_blank" rel="noreferrer">10.12968/ijpn.2014.20.4.165</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).
Type
The nature or genre of the resource
Journal Article
2014
Adolescent
Adult
Backlog
Caregivers
Child
Child Health Services
Female
Focus Groups
Great Britain
Health Personnel
Health Services Needs And Demand
Humans
International Journal of Palliative Nursing
Journal Article
King N
Male
Middle Aged
Parents
Patient Care Planning
Professional-family Relations
Psychological
Questionnaires
Rodriguez A
Stress
Terminal Care
-
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/10.2196/jmir.3018" target="_blank" rel="noreferrer">http://doi.org/10.2196/jmir.3018</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Growing a professional network to over 3000 members in less than 4 years: evaluation of InspireNet, British Columbia's virtual nursing health services research network
Publisher
An entity responsible for making the resource available
Journal Of Medical Internet Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Humans; Education; Communication; Nurses; Health Services Research; British Columbia; Focus Groups; Computer Communication Networks; Nursing Research; Health Services; Research; Internet; Nursing; Blogging; social media; social networking; User-Computer Interface
Creator
An entity primarily responsible for making the resource
Frisch N; Atherton P; Borycki E; Mickelson G; Cordeiro J; Novak LH; Black A
Description
An account of the resource
BACKGROUND: Use of Web 2.0 and social media technologies has become a new area of research among health professionals. Much of this work has focused on the use of technologies for health self-management and the ways technologies support communication between care providers and consumers. This paper addresses a new use of technology in providing a platform for health professionals to support professional development, increase knowledge utilization, and promote formal/informal professional communication. Specifically, we report on factors necessary to attract and sustain health professionals' use of a network designed to increase nurses' interest in and use of health services research and to support knowledge utilization activities in British Columbia, Canada. OBJECTIVE: "InspireNet", a virtual professional network for health professionals, is a living laboratory permitting documentation of when and how professionals take up Web 2.0 and social media. Ongoing evaluation documents our experiences in establishing, operating, and evaluating this network. METHODS: Overall evaluation methods included (1) tracking website use, (2) conducting two member surveys, and (3) soliciting member feedback through focus groups and interviews with those who participated in electronic communities of practice (eCoPs) and other stakeholders. These data have been used to learn about the types of support that seem relevant to network growth. RESULTS: Network growth exceeded all expectations. Members engaged with varying aspects of the network's virtual technologies, such as teams of professionals sharing a common interest, research teams conducting their work, and instructional webinars open to network members. Members used wikis, blogs, and discussion groups to support professional work, as well as a members' database with contact information and areas of interest. The database is accessed approximately 10 times per day. InspireNet public blog posts are accessed roughly 500 times each. At the time of writing, 21 research teams conduct their work virtually using the InspireNet platform; 10 topic-based Action Teams meet to address issues of mutual concern. Nursing and other health professionals, even those who rated themselves as computer literate, required significant mentoring and support in their efforts to adopt their practice to a virtual environment. There was a steep learning curve for professionals to learn to work in a virtual environment and to benefit from the available technologies. CONCLUSIONS: Virtual professional networks can be positioned to make a significant contribution to ongoing professional practice and to creating environments supportive of information sharing, mentoring, and learning across geographical boundaries. Nonetheless, creation of a Web 2.0 and social media platform is not sufficient, in and of itself, to attract or sustain a vibrant community of professionals interested in improving their practice. Essential support includes instruction in the use of Web-based activities and time management, a biweekly e-Newsletter, regular communication from leaders, and an annual face-to-face conference.
2014
Identifier
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<a href="http://doi.org/10.2196/jmir.3018" target="_blank" rel="noreferrer">10.2196/jmir.3018</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2014
Atherton P
Backlog
Black A
Blogging
Borycki E
British Columbia
Communication
Computer Communication Networks
Cordeiro J
Education
Focus Groups
Frisch N
Health Services
Health Services Research
Humans
Internet
Journal Article
Journal Of Medical Internet Research
Mickelson G
Novak LH
Nurses
Nursing
Nursing Research
Research
social media
social networking
User-Computer Interface
-
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/10.1002/pbc.24673" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.24673</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Pediatric oncology providers' perceptions of barriers and facilitators to early integration of pediatric palliative care
Publisher
An entity responsible for making the resource available
Pediatric Blood & Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Female; Humans; Male; Palliative Care; Neoplasms; Pediatrics; Adult; Aged; Middle Aged; Health Personnel; Focus Groups; Medical Oncology; Practice; Palliative Care; Attitudes; Health Knowledge
Creator
An entity primarily responsible for making the resource
Dalberg T; Jacob-Files E; Carney PA; Meyrowitz J; Fromme EK; Thomas G
Description
An account of the resource
BACKGROUND: Pediatric patients experience significant symptoms during cancer treatment. Symptom management is frequently inadequate. We studied perceptions of pediatric oncology care providers regarding early integration of palliative care (PC) for pediatric patients to identify barriers and facilitators that might assist in understanding how care could be improved. PROCEDURES: Pediatric oncology providers were recruited to participate in four focus groups. A proposal for early integration of a pediatric palliative care team (PPCT) was presented and followed by a facilitated discussion. Data were analytically categorized into themes by three independent coders using constant comparative analysis and crystallization techniques. A consensus approach was used to identify final themes. RESULTS: Barriers to the proposed care model of early integration of a PPCT included provider role, conflicting philosophy, patient readiness, and emotional influence and were more prevalent in the physician participants compared to nurse practitioner, nursing, and social work participants. Facilitators included patient eligibility, improved patient care, education, and evidence-based medicine. Though all participants were invested in providing optimal patient care, physician participants believed the current standard of care model is meeting the needs of patients and family, while the nurse practitioner, nursing, and social work participants working on the same healthcare team believed the proposed care model would improve the overall care of children diagnosed with cancer. CONCLUSIONS: Differing perceptions among healthcare providers regarding the care of children with cancer suggest that team functioning could be improved. Avenues for pilot testing early integration of PC could provide useful information for a next study.
2013-11
Identifier
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<a href="http://doi.org/10.1002/pbc.24673" target="_blank" rel="noreferrer">10.1002/pbc.24673</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2013
Adult
Aged
Attitudes
Backlog
Carney PA
Dalberg T
Female
Focus Groups
Fromme EK
Health Knowledge
Health Personnel
Humans
Jacob-Files E
Journal Article
Male
Medical Oncology
Meyrowitz J
Middle Aged
Neoplasms
Palliative Care
Pediatric Blood & Cancer
Pediatrics
Practice
Thomas G
-
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/10.1017/S1478951512000284" target="_blank" rel="noreferrer">http://doi.org/10.1017/S1478951512000284</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Exploring perceptions of psychological services in a children's hospice in the United Kingdom
Publisher
An entity responsible for making the resource available
Palliative & Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Child; Humans; Young Adult; Palliative Care; Great Britain; hospice care; Adult; Critical Illness; Parents; Professional-Family Relations; disabled children; Child Health Services; Focus Groups; Stress; Palliative Care; Psychological
Creator
An entity primarily responsible for making the resource
Wray Jo; Lindsay B; Crozier K; Andrews L; Leeson J
Description
An account of the resource
BACKGROUND: The provision of emotional and psychological support for all family members who need it is an essential element of holistic palliative care. Within East Anglia's Children's Hospice, teams of professionally trained and experienced workers offer psychosocial support to all family members at all times during the child's and family's journey. However, the effectiveness and appropriateness of current psychosocial provision is unclear, as is the requirement for any additional psychological services. OBJECTIVE: The purpose of this study was to elicit perceptions about current psychological support within the hospice from a group of stakeholders (parents, hospice staff, and external professionals). METHOD: Forty-five parents participated in family focus groups, telephone interviews, individual interviews in their home, or a web-based survey. Ninety-five hospice staff (including nurses, carers, play specialists, therapists, and family support practitioners) and 28 external staff (including physicians, nurses, and commissioning managers) were seen using a mixture of focus group and individual meetings. Focus groups and meetings were held at the hospice building or at an external venue. Interviews were recorded and transcribed verbatim and analyzed using thematic coding. RESULTS: Two main themes addressing perceptions of current psychological provision emerged: "understanding psychological support" and "unmet psychological need." Subthemes linked to support included choice, staff roles and labels, communication, and flexibility, whereas the themes within unmet need had a stronger focus on people and problems. SIGNIFICANCE OF RESULTS: Understanding different user perspectives is an important first step in enhancing current psychological provision; operationalizing the findings will be challenging.
2013-10
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/S1478951512000284" target="_blank" rel="noreferrer">10.1017/S1478951512000284</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2013
Adult
Andrews L
Backlog
Child
Child Health Services
Critical Illness
Crozier K
Disabled Children
Focus Groups
Great Britain
Hospice Care
Humans
Journal Article
Leeson J
Lindsay B
Palliative & Supportive Care
Palliative Care
Parents
Professional-family Relations
Psychological
Stress
Wray Jo
Young Adult
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/1367493513510630" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493513510630</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Why does it happen like this?' Consulting with users and providers prior to an evaluation of services for children with life limiting conditions and their families
Publisher
An entity responsible for making the resource available
Journal Of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
adolescent; Child; Humans; Palliative Care; referral and consultation; Family; Interviews as Topic; disabled children; Health Services Needs and Demand; Health Services Research; Child Health Services; Focus Groups; Children’s participation; quality of care
Creator
An entity primarily responsible for making the resource
Hunt A; Brown E; Coad J; Staniszewska S; Hacking S; Chesworth B; Chambers L
Description
An account of the resource
Children with life limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. We consulted with children, young people, their parents and local professionals to gain a more informed picture of issues affecting them prior to preparing a bid to evaluate services in the area. Multiple methods included focus groups, face-to-face and telephone interviews and participatory activities. Recordings and products from activities were analysed for content to identify areas of relevance and concern. An overarching theme from parents was 'Why does it happen like this?' Services did not seem designed to meet their needs. Whilst children and young people expressed ideas related to quality of environment, services and social life, professionals focused on ways of meeting the families' needs. The theme that linked families' concerns with those of professionals was 'assessing individual needs'. Two questions to be addressed by the evaluation are (1) to what extent are services designed to meet the needs of children and families and (2) to what extent are children, young people and their families consulted about what they need? Consultations with families and service providers encouraged us to continue their involvement as partners in the evaluation.
2015-09
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1367493513510630" target="_blank" rel="noreferrer">10.1177/1367493513510630</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2015
Adolescent
Backlog
Brown E
Chambers L
Chesworth B
Child
Child Health Services
Children’s participation
Coad J
Disabled Children
Family
Focus Groups
Hacking S
Health Services Needs And Demand
Health Services Research
Humans
Hunt A
Interviews As Topic
Journal Article
Journal Of Child Health Care
Palliative Care
Quality Of Care
Referral And Consultation
Staniszewska S
-
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
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URL Address
<a href="http://doi.org/10.1001/archpediatrics.2009.284" target="_blank" rel="noreferrer">http://doi.org/10.1001/archpediatrics.2009.284</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Palliative care of children with brain tumors: a parental perspective
Publisher
An entity responsible for making the resource available
Archives Of Pediatrics & Adolescent Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
adolescent; Child; Female; Humans; infant; Male; Young Adult; Palliative Care; home care services; Adult; Parents; Middle Aged; Attitude to Death; Qualitative Research; Focus Groups; Activities of Daily Living; Spirituality; Practice; Preschool; Adaptation; Psychological; Attitudes; Brain neoplasms; Health Knowledge; PEDI Study
Creator
An entity primarily responsible for making the resource
Zelcer S; Cataudella D; Cairney A; Elizabeth L; Bannister SL
Description
An account of the resource
OBJECTIVE: To explore the end-of-life experience of children with brain tumors and their families. DESIGN: Qualitative analysis of focus group interviews. SETTING: Children's Hospital, London Health Sciences Center. PARTICIPANTS: Twenty-five parents of 17 children who had died of brain tumors. INTERVENTION: Parents participated in 3 semistructured focus group interviews. MAIN OUTCOME MEASURES: Themes identified through thematic analysis of interview transcripts. RESULTS: Qualitative analysis identified 3 primary themes. (1) Parents described the dying trajectory of their child as characterized by progressive neurologic deterioration, with the loss of the ability to communicate as a turning point. Parental coping mechanisms included striving to maintain normality and finding spiritual strength through maintaining hope and in the resilience of their child. (2) Parental struggles during this phase included balancing competing responsibilities and speaking with their child about death. (3) Barriers to achieving a home death included suboptimal symptom management, financial and practical hardships, and inadequate community support. A fourth, secondary theme concerned the therapeutic benefits of the interview. CONCLUSION: The neurologic deterioration that characterizes the dying trajectory of children with brain tumors may create significant challenges for health care professionals and the children's parents, supporting the need for increased awareness of the distinct issues in the palliative care of children with brain tumors and for early anticipatory guidance provided for families.
2010-03
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/archpediatrics.2009.284" target="_blank" rel="noreferrer">10.1001/archpediatrics.2009.284</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2010
Activities of Daily Living
Adaptation
Adolescent
Adult
Archives Of Pediatrics & Adolescent Medicine
Attitude To Death
Attitudes
Backlog
Bannister SL
Brain Neoplasms
Cairney A
Cataudella D
Child
Elizabeth L
Female
Focus Groups
Health Knowledge
home care services
Humans
Infant
Journal Article
Male
Middle Aged
Palliative Care
Parents
PEDI Study
Practice
Preschool
Psychological
Qualitative Research
Spirituality
Young Adult
Zelcer S
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/0269216308098214" target="_blank" rel="noreferrer">http://doi.org/10.1177/0269216308098214</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Exploring the experiences and perspectives of families using a children's hospice and professionals providing hospice care to identify future research priorities for children's hospice care
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Humans; Attitude of Health Personnel; Health Services Accessibility; Health Services Needs and Demand; Qualitative Research; Focus Groups; Needs Assessment; Respite Care; Scotland; Charting the Territory; Family/psychology; Research/organization & administration; Palliative Care/organization & administration/standards; Hospice Care/organization & administration/standards; Terminal Care/organization & administration/psychology/standards
Creator
An entity primarily responsible for making the resource
Malcolm C; Forbat L; Knighting K; Kearney N
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216308098214" target="_blank" rel="noreferrer">10.1177/0269216308098214</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
The main objective of this study is to generate a list of priority topics for children's hospice care research in Scotland from the perspective of its key stakeholders. The method consists of qualitative semi-structured interviews with families using hospice services (n = 5), four focus groups with hospice staff and volunteers (n = 44) and telephone interviews with professionals associated with the hospice (n = 18). Fourteen broad themes emerged following thematic content and interpretive analysis of the interview data. Some of the research themes were specific to certain stakeholder groups, whereas other themes were identified unanimously across all the stakeholder groups as being priority areas for future research. Increasing awareness of and improving access to children's hospice care, hospice and respite care needs of young people, community/home care and issues related to supporting the wider family arose, independently, in all three stakeholder groups as being priority topics for future research. In conclusion, a greater evidence base is required in the field of children's palliative care and the topics researched should be identified and led by those most closely involved in the hospices. Engaging families and care providers in the process of identifying research priorities resulted in the development of an extensive research agenda, which will contribute to quality hospice care for children and families.
2008
Attitude Of Health Personnel
Backlog
Family/psychology
Focus Groups
Forbat L
Health Services Accessibility
Health Services Needs And Demand
Hospice Care/organization & administration/standards
Humans
Journal Article
Kearney N
Knighting K
Malcolm C
Needs Assessment
Palliative Care/organization & administration/standards
Palliative Medicine
Qualitative Research
Research/organization & administration
Respite Care
Scotland
Terminal Care/organization & administration/psychology/standards
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/0269216309104061" target="_blank" rel="noreferrer">http://doi.org/10.1177/0269216309104061</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Prioritization of future research topics for children's hospice care by its key stakeholders: a Delphi study
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Child; Humans; Terminally Ill; Family; Attitude of Health Personnel; Focus Groups; Needs Assessment; Delphi Technique; Scotland; adolescent; Palliative Care/organization & administration; Charting the Territory; Research/organization & administration; Hospice Care/organization & administration
Creator
An entity primarily responsible for making the resource
Malcolm C; Knighting K; Forbat L; Kearney N
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216309104061" target="_blank" rel="noreferrer">10.1177/0269216309104061</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
The Delphi process, widely used in health research to seek consensus on key issues amongst large stakeholder groups, was adopted to allow families, hospice staff/volunteers and linked professionals to identify and prioritize future research priorities for children's hospice care. In the qualitative Round 1, interviews with families (n = 5), linked professionals (n = 18) and focus groups with hospice staff and volunteers (n = 44) led to the generation of 56 research topics categorised within 14 broad themes. To give a larger number of stakeholders (n = 621) (including families n = 293; hospice staff/volunteers n = 216 and professionals n = 112) the opportunity to rate the importance of each research topic and seek group consensus on the future research priorities for children's hospice care, subsequent Rounds 2 and 3 involved the use of postal questionnaires. Response rates to questionnaires were 44% in Round 2 (274/621) and 83% in Round 3 (204/247). Participants prioritized research topics relating to 1) hospice and respite care needs of young people (aged 16 +), 2) pain and symptom management and 3) bereavement and end-of-life care. There was wide acknowledgement by those took part in the process of the difficulty in rating the topics, and emphasis on the fact that all of the topics raised during the project are of high importance and merit further research. The current salient issues perceived by key stakeholders as being the research priorities for children's hospice care were identified. Addressing these priority topics for research would further contribute to the development of a much needed evidence base in children's hospice and palliative care research and optimise the delivery of children's hospice services that are underpinned by valid and robust research.
2009
Adolescent
Attitude Of Health Personnel
Backlog
Child
Delphi Technique
Family
Focus Groups
Forbat L
Hospice Care/organization & administration
Humans
Journal Article
Kearney N
Knighting K
Malcolm C
Needs Assessment
Palliative Care/organization & Administration
Palliative Medicine
Research/organization & administration
Scotland
Terminally Ill
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1186/1471-2288-9-15" target="_blank" rel="noreferrer">http://doi.org/10.1186/1471-2288-9-15</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Online focus groups as a tool to collect data in hard-to-include populations: examples from paediatric oncology
Publisher
An entity responsible for making the resource available
Bmc Medical Research Methodology
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Humans; Pediatrics; Focus Groups; Medical Oncology; Online Systems; Population
Creator
An entity primarily responsible for making the resource
Tates K; Zwaanswijk M; Otten R; van Dulmen S; Hoogerbrugge PM; Kamps WA; Bensing JM
Description
An account of the resource
BACKGROUND: The purpose of this article is to describe and evaluate the methodology of online focus group discussions within the setting of paediatric oncology. METHODS: Qualitative study consisting of separate moderated asynchronous online discussion groups with 7 paediatric cancer patients (aged 8-17), 11 parents, and 18 survivors of childhood cancer (aged 8-17 at diagnosis). RESULTS: All three participant groups could be actively engaged over a one-week period. Respondents highly valued the flexibility and convenience of logging in at their own time and place to join the discussion. Adolescent patients and survivors emphasized that the anonymity experienced made them feel comfortable to express their views in detail. The findings indicate a strong preference for online group discussions across all participant groups. CONCLUSION: The findings show that online focus group methodology is a feasible tool for collecting qualitative data within the setting of paediatric oncology, and may offer new opportunities to collect data in other hard-to-include populations. The evaluations seem to indicate that the online group discussions have given participants an opportunity to articulate their experiences and views in a way they might not have done in a traditional group discussion.
2009
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/1471-2288-9-15" target="_blank" rel="noreferrer">10.1186/1471-2288-9-15</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2009
Backlog
Bensing JM
Bmc Medical Research Methodology
Focus Groups
Hoogerbrugge PM
Humans
Journal Article
Kamps WA
Medical Oncology
Online Systems
Otten R
Pediatrics
Population
Tates K
van Dulmen S
Zwaanswijk 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
Backlog
URL Address
<a href="http://search.ebscohost.com/login.aspx?direct=true&db=mnh&AN=20719816&site=ehost-live&scope=site" target="_blank" rel="noreferrer">http://search.ebscohost.com/login.aspx?direct=true&db=mnh&AN=20719816&site=ehost-live&scope=site</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Disease trajectories and ACT/RCPCH categories in paediatric palliative care
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Child; Female; Humans; Male; Palliative Care; Family; Attitude to Health; Interviews as Topic; Professional-Family Relations; Disease Progression; caregivers; Qualitative Research; Focus Groups; Wales; Caregivers/psychology; Family/psychology; PEDI Study; Palliative Care/psychology; Attitude to Health; Disease Progression
Creator
An entity primarily responsible for making the resource
Wood F; Simpson S; Barnes E; Hain R
Description
An account of the resource
The objective of this study was to provide a preliminary description of trajectories of life-limiting conditions (LLCs) using qualitative experiential data. Semi-structured interviews were conducted with families of children with LLCs, selected to encompass all Association for Children's Palliative Care (ACT)/Royal College of Paediatrics and Child Health (RCPCH) categories, using a schedule developed from focus groups of professionals. Thirty out of 76 families agreed to participate. Four of these were unsuitable. In nine out of 26 families, their child had died. In eight out of the 26, two individuals were interviewed. Twenty-four mothers, nine fathers, one sibling and two foster-carers were interviewed in total. The interview schedule was developed from data from four themed focus groups, comprising 25 professionals from 14 backgrounds. Thirty-four milestones in five phases were identified: Diagnosis, Loss of normality, Adjusting to new normality, Palliative phase and Death. Many milestones were common to all categories, suggesting that the ACT/RCPCH system encompasses related conditions. Others occurred in only some, suggesting trajectories in the categories are distinct. Significant themes emerging from qualitative data were: becoming expert in their child, concerns about service provision, information needs and relationships with health professionals. By presenting qualitative descriptive data regarding the lived experience of families of children with LLCs, this study provides preliminary evidence that the ACT/RCPCH categories are suitable tools for research and service development.;
2010-12
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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
2010
Attitude To Health
Backlog
Barnes E
Caregivers
Caregivers/psychology
Child
Disease Progression
Family
Family/psychology
Female
Focus Groups
Hain R
Humans
Interviews As Topic
Journal Article
Male
Palliative Care
Palliative Care/psychology
Palliative Medicine
PEDI Study
Professional-family Relations
Qualitative Research
Simpson S
Wales
Wood F
-
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/10.1016/j.apnr.2005.04.003" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.apnr.2005.04.003</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Recruitment and retention in a longitudinal palliative care study.
Publisher
An entity responsible for making the resource available
Applied Nursing Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Female; Humans; Male; Palliative Care; Adult; Data Collection; Middle Aged; Focus Groups; Longitudinal Studies; Patient Selection; Feasibility Studies; patient care team; caregivers; Neoplasms/therapy; Acquired Immunodeficiency Syndrome/therapy; Clinical Nursing Research/organization & administration; Patient Dropouts
Creator
An entity primarily responsible for making the resource
Sherman DW; McSherry CB; Parkas V; et al
Description
An account of the resource
A longitudinal feasibility study regarding quality of life and interventions for patients with advanced cancer or AIDS and their family caregivers was conducted to determine issues related to their recruitment and retention and to obtain pilot data relevant to the development of a larger study. At the completion of the study, a focus group consisting of the members of the palliative care research team was convened to identify barriers to and facilitators of the research process based on their research experience. The purpose of this article is to (1) describe recruitment, mortality rates, attrition rates, and compliance with data collection of patients and family caregivers experiencing an advanced illness and to (2) examine the researchers' perspectives regarding barriers to and facilitators of the research process that relate to patients and family caregivers, institutions, the data collection process, and their personal experiences. Implications for palliative care research are discussed.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.apnr.2005.04.003" target="_blank" rel="noreferrer">10.1016/j.apnr.2005.04.003</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2005
Acquired Immunodeficiency Syndrome/therapy
Adult
Applied Nursing Research
Backlog
Caregivers
Clinical Nursing Research/organization & administration
Data Collection
et al
Feasibility Studies
Female
Focus Groups
Humans
Journal Article
Longitudinal Studies
Male
McSherry CB
Middle Aged
Neoplasms/therapy
Palliative Care
Parkas V
Patient Care Team
Patient Dropouts
Patient Selection
Sherman DW
-
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/10.12968/ijpn.2005.11.12.20228" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2005.11.12.20228</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Seeking and using families' views to shape children's hospice services
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
2005
Subject
The topic of the resource
Child; Female; Humans; infant; Male; Great Britain; Adult; Parents; Professional-Family Relations; Focus Groups; Needs Assessment; Consumer Satisfaction; adolescent; Preschool; infant; Newborn; Health Care; Quality Assurance; Child Health Services/organization & administration; Hospice Care/organization & administration
Creator
An entity primarily responsible for making the resource
Maynard L; Rennie T; Shirtliffe J; Vickers D
Description
An account of the resource
Child and family involvement is key to improving the quality of children's hospice services. This article reports on a quality assurance initiative undertaken as one component of a clinical governance strategy. Service users participated in focus groups followed by lunch to discuss how staff communicated with them about their child's care, their family support needs, and how staff liaised with other professionals and organizations. There was general commendation of hospice services (in-house and community), but parents wished for more quantity and consistency with all elements of the care model. There was tension between respite and end-of-life care needs. Parents considered that the myth of hospices being 'just for death' needed dispelling and wanted other professionals to be more aware of its role, and the choice of earlier referral. Transition, both age and prognosis related, caused concern, with anxiety about long-term future or loss of support when prognosis improved. Parents also wanted better information about practical help and psycho-social support as well as up-to-date information about their child's treatment and management from all care providers.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2005.11.12.20228" target="_blank" rel="noreferrer">10.12968/ijpn.2005.11.12.20228</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2005
Adolescent
Adult
Backlog
Child
Child Health Services/organization & administration
Consumer Satisfaction
Female
Focus Groups
Great Britain
Health Care
Hospice Care/organization & administration
Humans
Infant
International Journal of Palliative Nursing
Journal Article
Male
Maynard L
Needs Assessment
Newborn
Parents
Preschool
Professional-family Relations
Quality Assurance
Rennie T
Shirtliffe J
Vickers D
-
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/10.1542/peds.2004-1321" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2004-1321</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Health care transition: youth, family, and provider perspectives
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Female; Humans; Male; Physician-Patient Relations; Family; Adult; Attitude to Health; Attitude of Health Personnel; Interdisciplinary Communication; Disabled Persons; Health Services Research; Focus Groups; Continuity of Patient Care; Patient Care Planning; Family Practice; adolescent; Adolescent Transitions; Health; Insurance; Chronic Disease/therapy; Adolescent Health Services/organization & administration; Delivery of Health Care/organization & administration; Pediatrics/organization & administration; Adolescent Medicine/organization & administration; CHIR Best Practices; Insurance Coverage
Creator
An entity primarily responsible for making the resource
Reiss JG; Gibson RW; Walker LR
Description
An account of the resource
OBJECTIVE: This study examined the process of health care transition (HCT) posing the following questions: What are the transition experiences of youths and young adults with disabilities and special health care needs, family members, and health care providers? What are promising practices that facilitate successful HCT? What are obstacles that inhibit HCT? METHODS: A qualitative approach was used to investigate these questions. Focus group interviews were conducted. Content and narrative analyses of interview transcripts were completed using ATLAS.ti. RESULTS: Thirty-four focus groups and interviews were conducted with 143 young adults with disabilities and special health care needs, family members, and health care providers. Content analysis yielded 3 content domains: transition services, which presents a chronological understanding of the transition process; health care systems, which presents differences between pediatric and adult-oriented medicine and how these differences inhibit transition; and transition narratives, which discusses transition experience in the broader context of relationships between patients and health care providers. CONCLUSION: This study demonstrated the presence of important reciprocal relationships that are based on mutual trust between providers and families and are developed as part of the care of chronically ill children. Evidence supports the need for appropriate termination of pediatric relationships as part of the transition process. Evidence further supports the idea that pediatric and adult-oriented medicines represent 2 different medical subcultures. Young adults' and family members' lack of preparation for successful participation in the adult health care system contributes to problems with HCT.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2004-1321" target="_blank" rel="noreferrer">10.1542/peds.2004-1321</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2005
Adolescent
Adolescent Health Services/organization & administration
Adolescent Medicine/organization & administration
Adolescent Transitions
Adult
Attitude Of Health Personnel
Attitude To Health
Backlog
CHIR Best Practices
Chronic Disease/therapy
Continuity Of Patient Care
Delivery of Health Care/organization & administration
Disabled Persons
Family
Family Practice
Female
Focus Groups
Gibson RW
Health
Health Services Research
Humans
Insurance
Insurance Coverage
Interdisciplinary Communication
Journal Article
Male
Patient Care Planning
Pediatrics
Pediatrics/organization & Administration
Physician-patient Relations
Reiss JG
Walker LR
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1365-2834.2004.00428.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1365-2834.2004.00428.x</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Transition of care: health care professionals' view
Publisher
An entity responsible for making the resource available
Journal Of Nursing Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Child; Humans; Adult; Attitude of Health Personnel; Questionnaires; Focus Groups; Needs Assessment; Hospitals; Nursing Methodology Research; Teaching; adolescent; Adolescent Transitions; Continuity of Patient Care/standards; Patient Transfer/standards; Chronic Disease/psychology/therapy; Adolescent Health Services/standards; London; Personnel; Pediatrics/standards; Hospital/psychology; Child Health Services/standards; Adolescent Medicine/standards
Creator
An entity primarily responsible for making the resource
Por J; Golberg B; Lennox V; Burr P; Barrow J; Dennard L
Description
An account of the resource
There is much anxiety regarding the transfer of adolescents with chronic illness to adult services. Transfer of patients can be haphazard if the transition has not been planned. Problems and obstacles to transition have been identified and discussed by various authors. The purpose of this small study was to explore the views and needs of health care professionals from one National Health Service trust regarding the transition of care for adolescents with a chronic condition from children's to adult services and to identify possible ways to improve the current services for this particular group of young adults. The sample comprised 40 health care professionals, nurses from the children's department and adult ward, doctors, psychologists, physiotherapists and pharmacists currently working in the same hospital trust. A postal survey was conducted. The data were analysed using descriptive statistics and content analysis. The main findings suggest that there is a need for a planned transition programme, supported by a clinical protocols and a specialist unit for adolescents. Health care professionals' views of patients and family/carers' needs and how such needs may be met were identified.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1365-2834.2004.00428.x" target="_blank" rel="noreferrer">10.1111/j.1365-2834.2004.00428.x</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2004
Adolescent
Adolescent Health Services/standards
Adolescent Medicine/standards
Adolescent Transitions
Adult
Attitude Of Health Personnel
Backlog
Barrow J
Burr P
Child
Child Health Services/standards
Chronic Disease/psychology/therapy
Continuity of Patient Care/standards
Dennard L
Focus Groups
Golberg B
Hospital/psychology
Hospitals
Humans
Journal Article
Journal Of Nursing Management
Lennox V
London
Needs Assessment
Nursing Methodology Research
Patient Transfer/standards
Pediatrics/standards
Personnel
Por J
Questionnaires
Teaching
-
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/10.1300/j010v37n01_03" target="_blank" rel="noreferrer">http://doi.org/10.1300/j010v37n01_03</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Father to father: focus groups of fathers of children with cancer
Publisher
An entity responsible for making the resource available
Social Work In Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Child; Female; Humans; Male; United States; Adult; Middle Aged; Focus Groups; Social Work; Cost of Illness; adolescent; Preschool; social support; caregivers; Parent caregivers; Neoplasms/nursing/psychology; Father-Child Relations
Creator
An entity primarily responsible for making the resource
Jones JB; Neil-Urban S
Description
An account of the resource
Caring for a child with cancer is a demanding experience for both parents, yet most research focuses on mothers. In this paper, we present the findings of a secondary analysis of data from a study in which the care-giving experience of fathers is investigated. In two focus groups, ten fathers provided first-hand information about caring for a child with cancer and its impact on their families. In addition, the findings demonstrate how these men through sharing a deeply meaningful and challenging experience offered mutual support and caring. This paper describes the fathers' remarkable and unexpected exchange. Social work implications are also addressed.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1300/j010v37n01_03" target="_blank" rel="noreferrer">10.1300/j010v37n01_03</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2003
Adolescent
Adult
Backlog
Caregivers
Child
Cost Of Illness
Father-child Relations
Female
Focus Groups
Humans
Jones JB
Journal Article
Male
Middle Aged
Neil-Urban S
Neoplasms/nursing/psychology
Parent caregivers
Preschool
Social Support
Social Work
Social Work in Health Care
United States
-
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://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=12114382" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=12114382</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Patients' perspectives on physician skill in end-of-life care: differences between patients with COPD, cancer, and AIDS
Publisher
An entity responsible for making the resource available
Chest
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Female; Male; Aged; Attitude to Death; Focus Groups; Medical; Non-U.S. Gov't; Pulmonary Disease; Human; Neoplasms/psychology; Truth Disclosure; Support; Middle Age; Ethics; Physician-Patient Relations; Terminal Care/psychology; Clinical Competence; Acquired Immunodeficiency Syndrome/psychology; Chronic Obstructive/psychology
Creator
An entity primarily responsible for making the resource
Curtis JR; Wenrich MD; Carline JD; Shannon SE; Ambrozy DM; Ramsey PG
Description
An account of the resource
OBJECTIVES: Patients' views of physician skill in providing end-of-life care may vary across different diseases, and understanding these differences will help physicians improve the quality of care they provide for patients at the end of life. The objective of this study was to examine the perspectives of patients with COPD, cancer, or AIDS regarding important aspects of physician skill in providing end-of-life care. DESIGN: Qualitative study using focus groups and content analysis based on grounded theory. SETTING: Outpatients from multiple medical settings in Seattle, WA. PATIENTS: Eleven focus groups of 79 patients with three diseases: COPD (n = 24), AIDS (n = 36), or cancer (n = 19). RESULTS: We identified, from the perspectives of patients, the important physician skills for high-quality end-of-life care. Remarkable similarities were found in the perspectives of patients with COPD, AIDS, and cancer, including the importance of emotional support, communication, and accessibility and continuity. However, each disease group identified a unique theme that was qualitatively more important to that group. For patients with COPD, the domain concerning physicians' ability to provide patient education stood out as qualitatively and quantitatively more important. Patients with COPD desired patient education in five content areas: diagnosis and disease process, treatment, prognosis, what dying might be like, and advance care planning. For patients with AIDS, the unique theme was pain control; for patients with cancer, the unique theme was maintaining hope despite a terminal diagnosis. CONCLUSIONS: Patients with COPD, AIDS, and cancer demonstrated many similarities in their perspectives on important areas of physician skill in providing end-of-life care, but patients with each disease identified a specific area of end-of-life care that was uniquely important to them. Physicians and educators should target patients with COPD for efforts to improve patient education about their disease and about end-of-life care, especially in the areas defined above. Physicians caring for patients with advanced AIDS should discuss pain control at the end of life, and physicians caring for patients with cancer should be aware of many patients' desires to maintain hope. Physician understanding of these differences will provide insights that allow improvement in the quality of care.
2002
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2002
Acquired Immunodeficiency Syndrome/psychology
Aged
Ambrozy DM
Attitude To Death
Backlog
Carline JD
Chest
Chronic Obstructive/psychology
Clinical Competence
Curtis JR
Ethics
Female
Focus Groups
Human
Journal Article
Male
Medical
Middle Age
Neoplasms/psychology
Non-U.S. Gov't
Physician-patient Relations
Pulmonary Disease
Ramsey PG
Shannon SE
Support
Terminal Care/psychology
Truth Disclosure
Wenrich MD
-
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="www.cinahl.com/cgi-bin/refsvc?jid=1364&accno=2003063190" target="_blank" rel="noreferrer">www.cinahl.com/cgi-bin/refsvc?jid=1364&accno=2003063190</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Research & commentary: parents' experience of inflammatory bowel disease
Publisher
An entity responsible for making the resource available
Paediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Child; Female; Male; Adult; Focus Groups; Interviews; ICU Decision Making; Support; psychosocial; Purposive Sample; Qualitative Studies; Family Coping; Inflammatory Bowel Diseases--Psychosocial Factors; Parental Attitudes
Creator
An entity primarily responsible for making the resource
Dampier S
Description
An account of the resource
http://search.ebscohost.com/login.aspx?direct=true&db=c8h&AN=2003063190&site=ehost-live
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2002
Adult
Backlog
Child
Dampier S
Family Coping
Female
Focus Groups
ICU Decision Making
Inflammatory Bowel Diseases--Psychosocial Factors
Interviews
Journal Article
Male
Paediatric Nursing
Parental Attitudes
psychosocial
Purposive Sample
Qualitative Studies
Support
-
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/10.1046/j.1525-1446.2000.00011.x" target="_blank" rel="noreferrer">http://doi.org/10.1046/j.1525-1446.2000.00011.x</a>
Dublin Core
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Title
A name given to the resource
Cudahy high school survey and focus groups: assessment of the needs of a teen population. A community-campus collaboration
Publisher
An entity responsible for making the resource available
Public Health Nursing (boston, Mass.)
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Female; Humans; Male; Cooperative Behavior; Focus Groups; Interinstitutional Relations; Wisconsin; adolescent; Adolescent Health Services/organization & administration; School Health Services/organization & administration; Needs Assessment/organization & administration; Community Health Nursing/education/organization & administration; School Nursing/organization & administration; Universities/organization & administration
Creator
An entity primarily responsible for making the resource
Doerr BT; Wantuch C
Description
An account of the resource
Collaboration between local public health agencies and university schools of nursing can be advantageous to both parties. Students need opportunities to learn aggregate-based care; health officers need community partnerships that expand their potential to accomplish core functions. This article offers a case study to illustrate a collaborative relationship. A high school survey and a plan for teen services were the focus of the joint endeavor. With guidance from faculty, students offered labor and expertise; the agency offered a real world laboratory for learning.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1046/j.1525-1446.2000.00011.x" target="_blank" rel="noreferrer">10.1046/j.1525-1446.2000.00011.x</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2000
Adolescent
Adolescent Health Services/organization & administration
Backlog
Community Health Nursing/education/organization & administration
Cooperative Behavior
Doerr BT
Female
Focus Groups
Humans
Interinstitutional Relations
Journal Article
Male
Needs Assessment/organization & administration
Public Health Nursing (boston, Mass.)
School Health Services/organization & administration
School Nursing/organization & administration
Universities/organization & administration
Wantuch C
Wisconsin
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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/10.1089/tmj.1.1998.4.225" target="_blank" rel="noreferrer">http://doi.org/10.1089/tmj.1.1998.4.225</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
A qualitative approach to community and provider needs assessment in a telehealth project
Publisher
An entity responsible for making the resource available
Telemedicine Journal : The Official Journal Of The American Telemedicine Association
Date
A point or period of time associated with an event in the lifecycle of the resource
1998
Subject
The topic of the resource
Humans; Program Development; British Columbia; Focus Groups; Needs Assessment; Telemedicine; Non-U.S. Gov't; Research Support; Remote Consultation
Creator
An entity primarily responsible for making the resource
Siden HB
Description
An account of the resource
OBJECTIVE: Needs assessment is a critical part of the design and implementation of telehealth projects. This study assessed the need for a telehealth link between a local community and a tertiary-care medical center. METHODS: The assessment was conducted using multiple focus groups in a remote community and at a tertiary-care pediatric and women's medical center. Participants were physicians and allied health professionals at both sites and the parents of pediatric patients. Data were analyzed for comment categories and thematic items. RESULTS: The focus groups revealed a number of important positive and negative attitudes regarding telehealth and priorities for implementation. Uncertainty and trust were two themes that emerged from all groups. The resulting design of the telehealth program incorporated these responses. CONCLUSION: Qualitative methods, including focus groups, can yield useful data on complex behavior and explore attitudes toward new and unfamiliar technology.
1998
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/tmj.1.1998.4.225" target="_blank" rel="noreferrer">10.1089/tmj.1.1998.4.225</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
1998
Backlog
British Columbia
Focus Groups
Humans
Journal Article
Needs Assessment
Non-U.S. Gov't
Program Development
Remote Consultation
Research Support
Siden HB
Telemedicine
Telemedicine Journal : The Official Journal Of The American Telemedicine Association
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1111/j.1744-6155.1997.tb00019.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1744-6155.1997.tb00019.x</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Health-related, help-seeking behaviors in female Mexican-American adolescents
Publisher
An entity responsible for making the resource available
Journal Of The Society Of Pediatric Nurses
Date
A point or period of time associated with an event in the lifecycle of the resource
1997
Subject
The topic of the resource
Child; Female; Humans; United States; Pregnancy; Health Services Needs and Demand; Focus Groups; Adolescent Health Services; Hispanic Americans; Health Behavior; adolescent; health promotion; Mexico/ethnology; Sex Education
Creator
An entity primarily responsible for making the resource
Rew L
Description
An account of the resource
PURPOSE: To explore and describe the health-related, help-seeking behaviors of young female Mexican-American adolescents. DESIGN: Qualitative exploratory-descriptive design using focus groups. SETTING: Community recreation centers. PARTICIPANTS: 18 female Mexican-Americans ages 10-16 years residing in a South Central state. MAIN OUTCOME MEASURES: A demographic information form and semi-structured interview designed for the study. RESULTS: Subjects described two themes of help-seeking behaviors: seeking help for physical health problems and preventive healthcare from formal sources (i.e., community health clinics, family physicians, and public schools), and seeking help for concerns about pubertal development and pregnancy from informal sources (i.e., their mothers, aunts, sisters, and friends). CONCLUSION: While young, female Hispanic adolescents may seek help from formal sources for preventive healthcare services and physical health problems not related to sexuality, they tend to seek help from informal sources for psychosocial and sexuality issues. Community-based interventions should be developed that focus on the importance of this pattern of help-seeking behaviors for young female Hispanics.
1997
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1744-6155.1997.tb00019.x" target="_blank" rel="noreferrer">10.1111/j.1744-6155.1997.tb00019.x</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
1997
Adolescent
Adolescent Health Services
Backlog
Child
Female
Focus Groups
Health Behavior
Health Promotion
Health Services Needs And Demand
Hispanic Americans
Humans
Journal Article
Journal Of The Society Of Pediatric Nurses
Mexico/ethnology
Pregnancy
Rew L
Sex Education
United States
-
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/10.1300/j010v30n02_05" target="_blank" rel="noreferrer">http://doi.org/10.1300/j010v30n02_05</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Advancing social work practice in end-of-life care
Publisher
An entity responsible for making the resource available
Social Work In Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
1999
Subject
The topic of the resource
Humans; United States; Palliative Care; Terminal Care; Health Care Surveys; Education; Focus Groups; bereavement; continuing; New York City; Social Work/education; New Jersey
Creator
An entity primarily responsible for making the resource
Christ GH; Sormanti M
Description
An account of the resource
Insufficient training of health professionals has often been cited as a major barrier to improving the system of care for dying patients and for the bereaved. Although specific problems have been identified for physicians and nurses, the problems of social work in this substantive area have only recently been explored. This study used a practitioner survey, focus groups, and a survey of faculty of schools of social work to broaden the information base. Results suggested that not unlike the professions of medicine and nursing, social work knowledge and skill development in the care of the dying is uneven and not integrated sufficiently with theoretical concepts and research. Social workers felt unprepared for this work by their master's level training and unsupported by continuing education programs. They recognized few social work scholars who could function as role models by providing comprehensive training, knowledge building, innovation, and advocacy. A program for leadership development was created to test new approaches to professional development in the care of the dying and the bereaved.
1999
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1300/j010v30n02_05" target="_blank" rel="noreferrer">10.1300/j010v30n02_05</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
1999
Backlog
Bereavement
Christ GH
Continuing
Education
Focus Groups
Health Care Surveys
Humans
Journal Article
New Jersey
New York City
Palliative Care
Social Work in Health Care
Social Work/education
Sormanti M
Terminal Care
United States
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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
n/a
URL Address
<a href="http://nsuworks.nova.edu/tqr/vol19/iss39/1/" target="_blank" rel="noreferrer">http://nsuworks.nova.edu/tqr/vol19/iss39/1/</a>
Dublin Core
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Title
A name given to the resource
Innovations in Research with Medically Fragile Populations: Using Bulletin Board Focus Groups
Publisher
An entity responsible for making the resource available
The Qualitative Report
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Bulletin Board Focus Group; Case Studies; Complexity; Disability/Disabled Persons; End-Of-Life Issues; Focus Groups; Illness and Disease; Young Adults
Creator
An entity primarily responsible for making the resource
Cook K; Jack S; Siden H; Thabane L; Browne G
Description
An account of the resource
A new group of medically fragile young adults are graduating from pediatric palliative care programs with limited expectations to live beyond early adulthood, and no comparable adult services to support their complex needs. Accessing this population is difficult because of the complexity of their conditions, the extensive personal and equipment supports that limit feasibility for travel, and divergent communication abilities. Therefore, we undertook a descriptive case study using an asynchronous modification of an online focus group, a bulletin board focus group (BBFG). The greatest strengths of the BBFG are the appeal of this methodology for young adults and the multi day focus group becomes both a community and an intervention. An important limitation of this method was participant follow through on discussion threads. This BBFG provided rich and varied types of data, and very positive participant experiences. Keywords: Bulletin Board Focus Group, Case Studies, Complexity, Disability/Disabled Persons, End-Of-Life Issues, Focus Groups, Illness and Disease, Young Adults
Identifier
An unambiguous reference to the resource within a given context
<a href="http://nsuworks.nova.edu/tqr/vol19/iss39/1/" target="_blank" rel="noreferrer">tqr/vol19/iss39/1</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).
2014
Browne G
Bulletin Board Focus Group
Case Studies
Complexity
Cook K
Disability/Disabled Persons
End-Of-Life Issues
Focus Groups
Illness and Disease
Jack S
Siden H
Thabane L
The Qualitative Report
Young Adults
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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
n/a
URL Address
<a href="https://doi.org/10.1080/15524256.2012.732021" target="_blank" rel="noreferrer">https://doi.org/10.1080/15524256.2012.732021</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Informing social work practice through research with parent caregivers of a child with a life-limiting illness
Publisher
An entity responsible for making the resource available
Journal Of Social Work In End-of-life & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
Adaptation; Adult; Attitude to Health; caregivers; Child; Female; Focus Groups; Humans; Male; Middle Aged; Palliative Care; Parent-Child Relations; Parents; Professional-Family Relations; Psychological; social support; Social Work; Stress; Terminal Care
Creator
An entity primarily responsible for making the resource
Cadell S; Kennedy K; Hemsworth D
Description
An account of the resource
Pediatric palliative care is an evolving field of practice in social work. As such, research plays a critical role in informing best social work practices in this area. For parents, caring for a child with a life-limiting illness (LLI) is a stressful experience that compounds the usual challenges of parenting. The negative aspects of caring for a child with an LLI are well documented. In the face of such adversity, parent caregivers can also experience positive changes caring for children with even the most serious conditions. This article presents results from a research study of posttraumatic growth in parents who are caring for a child with a LLI. Using mixed methods, two overarching themes were prominent in both the quantitative and qualitative data. The first describes stress related to financial burden associated with caregiving. The second theme concerns the posttraumatic growth experienced by the parent caregivers. The quantitative and qualitative data have been woven together to underscore issues and parental perspectives related to these two themes. This provides a unique and important platform for parent caregivers' experiences that can inform the work of social workers and other pediatric palliative care professionals.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1080/15524256.2012.732021" target="_blank" rel="noreferrer">10.1080/15524256.2012.732021</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).
2012
Adaptation
Adult
Attitude To Health
Cadell S
Caregivers
Child
Female
Focus Groups
Hemsworth D
Humans
Journal of Social Work in End-of-Life & Palliative Care
Kennedy K
Male
Middle Aged
Palliative Care
Parent-child Relations
Parents
Professional-family Relations
Psychological
Social Support
Social Work
Stress
Terminal Care
-
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
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Title
A name given to the resource
Short Break And Emergency Respite Care: What Options For Young People With Life-limiting Conditions?
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; Adult; Emergency Medical Services; Focus Groups; Humans; Interviews As Topic; Respite Care; Terminally Ill; Young Adult
Life-limiting Conditions; Palliative Care; Respite Care; Short Breaks; Transition; Young People
Creator
An entity primarily responsible for making the resource
Mitchell TK; Knighting K; O’Brien MR; Jack BA
Description
An account of the resource
BACKGROUND:
Service providers face difficult decisions about how best to develop services for the increasing numbers of young people with life-limiting conditions who require palliative care.
OBJECTIVE:
To explore alternative short break and emergency respite care options to children's hospice care.
METHODS:
A two-phase evaluation with young people, families and professionals. Phase 1: qualitative semi-structured interviews and focus groups (n=53). Phase 2: mixed-method survey (n=82), qualitative findings only.
RESULTS:
There were few, or no, appropriate short break and emergency respite care alternatives when children's hospice care was not available that can meet the need of young people with life-limiting conditions, creating anxiety for children's hospice users and those leaving the service as a result of reaching transition age or through no longer meeting the children's hospice eligibility criteria.
CONCLUSION:
Access to appropriate short break and emergency respite care is required to prevent lifelong negative consequences for young people with life-limiting conditions, their family and society. Research is undoubtedly required to explore the impact and outcomes of children's hospice discharge for young people and their family. Particular attention should be paid to the lack of services for an increasing population making the transition from children's hospices.
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
Adult
Emergency Medical Services
Focus Groups
Humans
International Journal of Palliative Nursing
Interviews As Topic
Jack BA
Knighting K
Life-limiting Conditions
May 2016 List
Mitchell TK
O’Brien MR
Palliative Care
Respite Care
Short Breaks
Terminally Ill
Transition
Young Adult
Young People
-
Text
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Citation List Month
May 2016 List
Dublin Core
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Title
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“the Nice Thing About Doctors Is That You Can Sometimes Get A Day Off School”: An Action Research Study To Bring Lived Experiences From Children, Parents And Hospice Staff Into Medical Students’ Preparation For Practice.
Publisher
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Bmj Supportive & Palliative Care
Date
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2016
Subject
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Adolescent; Child; Clinical Competence/standards; Education Medical/standards; Female; Focus Groups; Health Services Research; Hospice Care/standards; Humans; Male; Pediatrics/education; Pediatrics/standards; Physician-patient Relations
Education And Training; Hospice Care; Pediatrics; Palliative Care; Qualitative Research
Creator
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Spalding J; Yardley S
Description
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Abstract
Patient and public involvement in healthcare is important to ensure services meet their needs and priorities. Increasingly, patient experiences are being used to educate healthcare professionals. The potential contribution to medical education of children and parents using hospice services has not yet been fully explored.
OBJECTIVES:
(1) To explore perceptions of what medical students must learn to become 'good doctors' among children, parents and staff in a hospice. (2) To collaborate with children/parents and staff to develop educational materials based on their lived experiences for medical students. (3) To assess feasibility of student-led action research in a children's hospice to develop research skills.
METHODS:
Prospective ethical approval received. Volunteer children (n=7), parents (n=5) and staff (n=6) were recruited from a children's hospice. Data were generated in audio-recorded semistructured focus groups, individual interviews and/or activity workshops. Participants discussed what newly qualified doctors' needed to care for children with life-limiting conditions. Audio data were transcribed and combined with visual data for thematic analysis. Findings were refined by participant feedback. This paper presents thematic findings and educational material created from the project.
RESULTS:
Thematic analysis identified six learning themes: (1) treat children as individuals; (2) act as a person before being a doctor; (3) interpersonal communication; (4) appreciate the clinical environment; (5) learn from children, parents and other staff; (6) how to be a doctor as part of a team. The student researcher successfully developed qualitative research skills, coproducing materials with participants for sharing learning derived from lived experiences.
CONCLUSIONS:
All participants were willing and able to make valuable contributions, and believed that this was a worthwhile use of time and effort. Further work is required to understand how best to integrate the experiences of children in hospices into medical education.
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
Adolescent
BMJ Supportive & Palliative Care
Child
Clinical Competence/standards
Education And Training
Education Medical/standards
Female
Focus Groups
Health Services Research
Hospice Care
Hospice Care/standards
Humans
Male
May 2016 List
Palliative Care
Pediatrics
Pediatrics/education
Pediatrics/standards
Physician-patient Relations
Qualitative Research
Spalding J
Yardley S