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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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December 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
December 2020 List
URL Address
<a href="http://doi.org/10.1186/s12904-020-00672-4" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-020-00672-4</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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Family experiences with palliative care for children at home: a systematic literature review
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Child; Family; Family centred care; Home care; Life limiting condition; Life threatening condition; Parents; Pediatric palliative care; Ppc; Sibling
Creator
An entity primarily responsible for making the resource
Winger A; Kvarme LG; Løyland B; Kristiansen C; Helseth S; Ravn IH
Description
An account of the resource
BACKGROUND: The main goal of pediatric palliative care (PPC) is to improve or maintain the best possible quality of life (QoL) for the child and their family. PPC can be provided in community health centres, within the specialist health care service and/or in the child's home. Home is often the preferred place for families, and recommendations state that, whenever possible, the family home should be the centre of care for the child. The aim of this study is to systematically review the experiences and needs of families with children receiving palliative care at home. METHODS: We conducted a systematic review and searched the peer-reviewed databases CINAHL, Embase, PsycInfo and MEDLINE for articles published between January 2000 and October 2019. We included 23 studies emphasising the experience of family members when their child (0-18 years) received palliative care at home. We used a thematic analysis to identify relevant themes in the literature, and synthesised the findings from the different studies. RESULTS: The review represents the experiences of the families of almost 300 children with life-limiting (LL) and life-threatening (LT) conditions receiving palliative care at home. In general, the children's mothers are interviewed, and seldom the sick children themselves or their siblings. Most families preferred staying at home since it made it easier to maintain a normal family life, was less stressful for the sick child, and meant that siblings could still attend school and be with friends. Families experienced a range of challenges due to the coordination of care, including a lack of support and adequately skilled staff with appropriate experience. Respite care was needed in order to cope with everyday life. Some studies were not specific concerning the place of care, and some relevant papers may have been omitted. CONCLUSIONS: Families receiving PPC need organised, individualised support from a skilled PPC team. Respite care is necessary in order to manage a demanding home-care situation and parents need support for siblings. Privacy to be a family is a need, and many families need financial support. Future studies should focus on PPC at home in the perspectives of sick children and their siblings.
Identifier
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<a href="http://doi.org/10.1186/s12904-020-00672-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-00672-4</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).
2020
BMC Palliative Care
Child
December 2020 List
Family
Family centred care
Helseth S
Home Care
Kristiansen C
Kvarme LG
Life limiting condition
Life threatening condition
Løyland B
Parents
Pediatric Palliative Care
Ppc
Ravn IH
Sibling
Winger A
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
September 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2022 List
URL Address
<a href="http://doi.org/10.12968/ijpn.2022.28.5.193" target="_blank" rel="noreferrer noopener">http://doi.org/10.12968/ijpn.2022.28.5.193</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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'I No Longer Feel Alone': Meeting the Needs of Bereaved Grandparents Through a Children's Hospice Support Group
Publisher
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International Journal of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Bereavement; Grief; Child; Palliative care; Adult; Children; Hospice; Grandparents; Family centred care
Creator
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Tatterton M J; Lyon JA
Description
An account of the resource
BACKGROUND: Children's hospices provide a range of family-centred care services, including bereavement support. Not all hospices provide specific services for grandparents. AIM: To explore how a hospice-based bereavement support group supported grandparents in their grief following the death of a grandchild. METHODS: Grandparents attending a group were invited to complete an anonymous questionnaire. Questionnaires from eight groups, run between 2015 and 2019 were collated and interpreted to identify themes. FINDINGS: A total of 121 grandparents attended the groups; 113 returned the questionnaires (93% response). A total of three superordinate themes were identified: environment and space, being with people who understand, and the opportunity to hear the stories of others. Grandparents valued hearing the stories of others, providing an opportunity to reflect on the experience of others. CONCLUSION: Grandparents felt supported and validated by the group. Facilitated sessions increased coping and resilience of participants, enabling grandparents to support their partner, adult children and surviving grandchildren more effectively.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2022.28.5.193" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2022.28.5.193</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Adult
Bereavement
Child
Children
Family centred care
Grandparents
Grief
Hospice
International Journal of Palliative Nursing
Lyon JA
Palliative Care
September 2022 List
Tatterton M J
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
July 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July List 2023
URL Address
<a href="http://doi.org/10.1177/02692163231172244" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163231172244</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
You have a little human being kicking inside you and an unbearable pain of knowing there will be a void at the end': A meta-ethnography exploring the experience of parents whose baby is diagnosed antenatally with a life limiting or life-threatening condition
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
2023
Subject
The topic of the resource
advance care planning; Antenatal diagnosis; family centred care; family nursing; hospice care; Humanism; Humanities; Humans; maternal-child nursing; palliative care; perinatal care
Creator
An entity primarily responsible for making the resource
Tatterton MJ; Fisher MJ
Description
An account of the resource
BACKGROUND: Parents of babies diagnosed with life limiting conditions in the perinatal period face numerous challenges. Considerations include the remainder of the pregnancy, delivery of the baby and decisions around care in the neonatal period. AIM: To increase understanding of how parents experience the diagnosis of a life-limiting or life-threatening condition, during pregnancy and following the birth of their baby, by answering the question: 'what is known about the perinatal experiences of parents of babies with a life-limiting or life-threatening diagnosis?' DESIGN: A meta-ethnography was conducted to synthesise findings from existing qualitative evidence. DATA SOURCES: British Nursing Database, CINAHL, Medline, PsycINFO and Embase databases were searched in January 2023. FINDINGS: Relationships between parents and their families and friends, and with professionals influence the needs and experiences of parents, which oscillate between positive and negative experiences, throughout parents' perinatal palliative care journey. Parents highlighted the need for control and a sense of normality relating to their parenting experience. Validation was central to the experience of parents at all stages of parenthood. Relationships between the parent and the baby were unwavering, underpinned with unconditional love. CONCLUSION: Professionals, family members and friendship groups influence the experience, validating parents and their baby's identity and supporting parents in having a sense of control and normality by demonstrating empathy, and providing time and clear communication.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/02692163231172244" target="_blank" rel="noreferrer noopener">10.1177/02692163231172244</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Advance Care Planning
Antenatal diagnosis
Family centred care
Family Nursing
Fisher MJ
Hospice Care
Humanism
Humanities
Humans
July List 2023
Maternal-Child Nursing
Palliative Care
Palliative Medicine
Perinatal Care
Tatterton MJ