1
40
14
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Dublin Core
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Title
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2023 Special Edition 1 - Parent Perspectives List
Text
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2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1177/00099228221142102" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/00099228221142102</a>
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Title
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The Experience of Parental Caregiving for Children With Medical Complexity
Publisher
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Clinical Pediatrics
Date
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2022
Creator
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Teicher J; Moore C; Esser K; Weiser N; Arje D; Cohen E; Orkin J
Description
An account of the resource
Children with medical complexity (CMC) have complex chronic conditions with significant functional impairment, contributing to high caregiving demand. This study seeks to explore impacts of parental caregiving for CMC. Fifteen caregivers of CMC followed at a tertiary care hospital participated in semi-structured interviews. Interviews were concurrently analyzed using a qualitative description framework until thematic saturation was reached. Codes were grouped by shared concepts to clarify emergent findings. Four affected domains of parental caregiver experience with associated subthemes (in parentheses) were identified: personal (identity, physical health, mental health), family (marriage, siblings, family quality of life), social (time limitations, isolating lived experience), and financial (employment, medical costs, accessibility costs). Despite substantial challenges, caregivers identified two core determinants of personal resilience: others' support (hands-on, interpersonal, informational, material) and a positive outlook (self-efficacy, self-compassion, reframing expectations). Further research is needed to understand the unique needs and strengths of caregivers for this vulnerable population.
Identifier
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<a href="http://doi.org/10.1177/00099228221142102" target="_blank" rel="noreferrer noopener">10.1177/00099228221142102</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
2023 SE1 - Parent Perspectives
Arje D
Caregivers
Children With Medical Complexity
Clinical Pediatrics
Cohen E
Esser K
Moore C
Orkin J
Parenting
Qualitative Research
Quality Of Life
Teicher J
Weiser N
-
Dublin Core
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Title
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Special Edition #2 2022 List
Text
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Citation List Month
Special Edition #2
URL Address
<a href="http://doi.org/10.1089/jpm.2020.0131" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2020.0131</a>
Dublin Core
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Title
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Identifying as a Good Parent: Considering the Communication Theory of Identity for Parents of Children Receiving Palliative Care
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Adolescence; Child; Communication; Compassion; Conceptual Framework; Coping; Family Centered Care; Male; Palliative Care; Parental Attitudes; Parenting; Parents; Pediatric Care; Personality; Professional-Family Relations; Social Identity; Stress; Support; Theoretical models
Creator
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Weaver MS; Hinds PS; Kellas JK; Hecht ML
Description
An account of the resource
Background: Parents of seriously ill children are at risk of psychosocial morbidity, which may be mitigated by competent family-centered communication and role-affirming conversations. Parent caregivers describe a guiding desire to do a good job in their parenting role but also depict struggling under the intense weight of parental duty. Objectives and Design: Through this case study, the Communication Theory of Identity (CTI) provides a framework for conceptualizing how palliative care teams can help parents cope with this reality. CTI views communication with care teams as formative in the development and enablement of parental perceptions of their "good parenting" role. Results: Palliative care teams may consider the four frames of identity (personal, enacted, relational, and communal) as meaningful dimensions of the parental pursuit to care well for an ill child. Conclusion: Palliative care teams may consider compassionate communication about parental roles to support the directional virtues of multilayered dynamic parental identity.
Identifier
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<a href="http://doi.org/10.1089/jpm.2020.0131" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0131</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
2022 Special Edition 2 - Parent Perspectives
Adolescence
Child
Communication
compassion
Conceptual Framework
Coping
Family Centered Care
Hecht ML
Hinds PS
Journal of Palliative Medicine
Kellas JK
Male
Palliative Care
Parental Attitudes
Parenting
Parents
Pediatric Care
Personality
Professional-family Relations
Social Identity
Stress
Support
Theoretical models
Weaver MS
-
Dublin Core
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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/10.1007/s10826-021-02027-w" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s10826-021-02027-w</a>
Dublin Core
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Title
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Parenting Surviving Children After the Death of a Child from Cancer: An Interpretative Phenomenological Analysis
Publisher
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Journal of Child and Family Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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parenting; pediatric cancer; bereavement; interpretive phenomenological analysis; surviving
Creator
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Haylett WJ; Scott-Tilley D; Spencer B; Hwang SH; Foster Akard T
Description
An account of the resource
The death of a child is a tragic, devastating event with enormous emotional and relational impact on the family unit. Parental changes are significant, encompassing the psychological, physical, spiritual, and interpersonal realms. Little bereavement research has focused on the crucial familial role of parenting or the relationship between bereaved parents and their surviving children after another child’s death. A noteworthy gap likewise exists in current literature regarding the experience of parenting within families who suffered the death of a child due to an extended, life-limiting illness such as cancer. This interpretative phenomenological analysis addresses the gap by exploring the lived experience of those who parent surviving children after their child’s cancer death. Seven mothers and four fathers (n = 11) across the United States participated in video or face-to-face semi-structured individual interviews. Parents had a range of 1–2 surviving children whose ages spanned 23 months-18 years (M = 8.27; SD = 5.07) at the time of their sibling’s death (M = 5.43 years earlier; SD = 3.17). Data analysis revealed two primary themes. “A New Mind” denotes bereaved parents’ new, contrasting mindsets regarding self-view, daily motivators, perceived locus of control, perspective, boundaries for children, direction of focus, and outside relationships. “Be Beside Me” highlights parents’ deep desire that others come alongside them by validating their emotions and experience and providing opportunities for family renewal. Clinicians working with bereaved families should have awareness of and consider parents’ changed perspectives, challenges, and supportive needs in order to deliver family-centered care and enrich existing services and support programs.
Identifier
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<a href="http://doi.org/10.1007/s10826-021-02027-w" target="_blank" rel="noreferrer noopener">10.1007/s10826-021-02027-w</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2022 Special Edition 1 - Parent Perspectives
Bereavement
Foster Akard T
Haylett WJ
Hwang SH
interpretive phenomenological analysis
Journal of child and family studies
Parenting
Pediatric Cancer
Scott-Tilley D
Spencer B
surviving
-
Dublin Core
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Title
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March 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
March 2021 List
URL Address
<a href="http://doi.org/10.1177/0030222818819350" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0030222818819350</a>
Dublin Core
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Title
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The Phenomenon of Bereaved Parenting: An Integrative Review of Literature
Publisher
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Omega: Journal of Death & Dying
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Emotions; Psychology; Communication; Bereavement; Survivors; Conflict (Psychology); Human; Coping; Parenting; Grief; Social Work; Parents -- Psychosocial Factors; Systematic Review; Parental Role; Family Role; Science
Creator
An entity primarily responsible for making the resource
Haylett WJ; Scott Tilley D
Description
An account of the resource
Bereaved parenting, a role that entails parenting surviving children after experiencing the death of a child, is a unique but understudied phenomenon within bereavement research. Not much is known about the impact of a child's death on this crucial familial role. An integrative review of literature of 20 studies across psychology, nursing, communications, social work, and family sciences was undertaken to determine the current state of science regarding bereaved parenting. Results revealed three influential contexts: the general context of parental grief and bereavement, described as traumatic and life-changing experiences; the personal context of the resulting parental changes and coping strategies; and the relational context of the subsequent parenting of surviving children, an experience characterized by periodic conflict between personal and children's needs, emotional fluctuations, challenges with levels of protectiveness and control, and a heightened sense of responsibility within the parental role. Discussion of results and implications for research are presented.
Identifier
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<a href="http://doi.org/10.1177/0030222818819350" target="_blank" rel="noreferrer noopener">10.1177/0030222818819350</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Bereavement
Communication
Conflict (Psychology)
Coping
Emotions
Family Role
Grief
Haylett WJ
Human
March 2021 List
Omega: Journal Of Death & Dying
Parental Role
Parenting
Parents -- Psychosocial Factors
Psychology
Science
Scott Tilley D
Social Work
Survivors
Systematic Review
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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February 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
February 2021 List
URL Address
<a href="http://doi.org/10.3390/children7120265" target="_blank" rel="noreferrer noopener">http://doi.org/10.3390/children7120265</a>
Dublin Core
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Title
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Honoring the Good Parent Intentions of Courageous Parents: A Thematic Summary from a US-Based National Survey
Publisher
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Children (Basel)
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
pediatric; family; parenting; communication; pediatric palliative care; complex medical needs
Creator
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Weaver MS; Neumann ML; Lord B; Wiener L; Lee J; Hinds PS
Description
An account of the resource
BACKGROUND: Parents of children with complex medical needs describe an internal, personal definition of "trying to be a good parent" for their loved child. Gaps exist in the current "good parent concept" literature: (1) When the idea of "trying to be a good parent" comes into existence for parents, (2) How parents' definition of "being a good parent" may change over time and may influence interactions with the child, and (3) Whether parents perceive attainment of their personal definition. AIM: The purpose of this study was to explore these current gaps in the "good parent concept" knowledge base from the perspective of parents of children with chronic or complex illness. MATERIALS AND METHODS: These themes were explored through a 63-item, mixed-method web-based survey distributed by the Courageous Parents Network (CPN), an organization and online platform that orients, educates, and empowers families and providers caring for seriously ill children. RESULTS: The term "trying to be a good parent" resonated with 85% of the 67 responding parents. For the majority of parents, the concept of "being a good parent" started to exist in parental awareness before the child's birth (70.2%) and evolved over time (67.5%) to include less judgment and more self-compassion. Parents identified their awareness of their child's prognosis and changing health as influential on their "trying to be a good parent" concept. Parental advocacy, child's age, and duration of illness were reported as influencing parental perceptions of having achieved their definition of "being a good parent". CONCLUSIONS: Familiarity with parental perspectives on their parenting goodness and goals is a necessary core of family-centric health care.
Identifier
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<a href="http://doi.org/10.3390/children7120265" target="_blank" rel="noreferrer noopener">10.3390/children7120265</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
Children (Basel)
Communication
complex medical needs
Family
February 2021 List
Hinds PS
Lee J
Lord B
Neumann ML
Parenting
Pediatric
Pediatric Palliative Care
Weaver MS
Wiener L
-
Dublin Core
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Title
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October 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
September 2018 List
URL Address
<a href="http://doi.org/10.1080/13548506.2018.1434215" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1080/13548506.2018.1434215</a>
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Title
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Bittersweet: a qualitative exploration of mothers' experiences of raising a single surviving twin
Publisher
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Psychology, Health & Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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Bereavement; Conceptual Framework; Facebook; Family Coping; Grief; Human; Maternal Attitudes; Maternal Role; Multiple Offspring; Narratives; Parenting; Psychosocial; Qualitative Studies; Self Concept; Social Identity; Support; Surveys; Thematic Analysis; Twins; United Kingdom
Creator
An entity primarily responsible for making the resource
Jordan A; Smith P; Rodham K
Description
An account of the resource
Loss of a child from a multiple birth pregnancy is not uncommon yet the idiographic experience of parents who have lost a single twin from a multiple birth pregnancy is underexplored. This novel study sought to explore the experiences of mothers bereaved after loss of a twin from a multiple birth pregnancy, focusing on the dual challenges of parenting and grieving. Eighteen mothers at least 12 months post loss were recruited from a private UK based Facebook page dedicated to supporting parents after loss from a multiple birth. Eligible mothers completed an independent qualitative open-ended survey to explore maternal experiences of loss. Data were analysed using Thematic Analysis. Findings represented a sense of duality for participants, with mothers experiencing conflict between roles and identities as well as the nature of their loss. Key themes identified include 'Narrating a story of family and loss', 'Finding a place for the twins within the family' and 'A changing sense of self'. Findings fit with theoretical conceptualisations of bereavement that acknowledge retaining relationships with the deceased. Practically, suggestions for supporting mothers to identify stock answers to often asked questions about family make up were suggested.
Identifier
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<a href="http://doi.org/10.1080/13548506.2018.1434215" target="_blank" rel="noreferrer noopener">10.1080/13548506.2018.1434215</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
Bereavement
Conceptual Framework
Facebook
Family Coping
Grief
Human
Jordan A
Maternal Attitudes
Maternal Role
Multiple Offspring
Narratives
Parenting
Psychology, Health & Medicine
psychosocial
Qualitative Studies
Rodham K
Self Concept
September 2018 List
Smith P
Social Identity
Support
surveys
Thematic Analysis
Twins
United Kingdom
-
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/S147895151300134X" target="_blank" rel="noreferrer">http://doi.org/10.1017/S147895151300134X</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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Understanding parental behavior in pediatric palliative care: Attachment theory as a paradigm
Publisher
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Palliative & Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
attachment theory; parenting
Creator
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Kearney JA; Byrne MW
Description
An account of the resource
Objective: The objective of this conceptual paper was to present important constructs in attachment theory as they apply to parent and caregiver behavior in pediatric palliative care. Clarification of these constructs is provided with specific reference to their clinical application as well as their reflection in current empirical literature. Social attachment theory is proposed as a developmentally contextual model for the study of parenting in pediatric palliative and end-of-life care. Method: A comprehensive search was conducted of pertinent literatures. These included classic as well as recent theory and research in attachment theory in addition to the empirical literatures on parent and family experience in pediatric palliative care, serious illness, and beyond to parental bereavement. Other relevant literature was examined with respect to the phenomena of concern. Results: The empirical literature in pediatric palliative care supports the use of central concepts in attachment theory as foundational for further inquiry. This is evidenced in the emphasis on the importance of parental protection of the child, as well as executive activities such as decision making and other prominent parental operations, parental psychological resolution of the child's diagnosis and illness as well as coping and meaning making, and the core significance of parental relationships with providers who provide secure-base and safe-haven functions. Significance of Results: The promise for developing integrated, conceptually based interventions from construction through implementation is of urgent importance to children and families receiving pediatric palliative care services. Focusing on key parental behaviors and processes within the context of a well-studied and contextually appropriate model will inform this task efficiently. The attachment paradigm meets these criteria and has promise in allowing us to move forward in developing well-defined, inclusive, and conceptually grounded protocols for child and family psychosocial research, practice, and education in this specialty.
2014-02
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/S147895151300134X" target="_blank" rel="noreferrer">10.1017/S147895151300134X</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2014
attachment theory
Backlog
Byrne MW
Journal Article
Kearney JA
Palliative & Supportive Care
Parenting
-
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.24556" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.24556</a>
<a href="http://onlinelibrary.wiley.com/doi/10.1002/pbc.24556/abstract" target="_blank" rel="noreferrer">http://onlinelibrary.wiley.com/doi/10.1002/pbc.24556/abstract</a>
Dublin Core
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Title
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Child-rearing in the context of childhood cancer: Perspectives of parents and professionals
Publisher
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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
psychosocial; Pediatric; cancer; parenting; childhood; Child Rearing
Creator
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Long KA; Keeley L; Reiter-Purtill J; Vannatta K; Gerhardt CA; Noll RB
Description
An account of the resource
Background Elevated distress has been well documented among parents of children with cancer. Family systems theories suggest that cancer-related stressors and parental distress have the potential to affect child-rearing practices, but this topic has received limited empirical attention. The present work examined self-reported child-rearing practices among mothers and fathers of children with cancer and matched comparisons. Procedure Medical and psychosocial professionals with expertise in pediatric oncology selected items from the Child-Rearing Practices Report (CRPR) likely to differentiate parents of children with cancer from matched comparison parents. Then, responses on these targeted items were compared between parents of children with cancer (94 mothers, 67 fathers) and matched comparisons (98 mothers, 75 fathers). Effect sizes of between-group differences were compared for mothers versus fathers. Results Pediatric oncology healthcare providers predicted that 14 items would differentiate child-rearing practices of parents of children with cancer from parents of typically developing children. Differences emerged on six of the 14 CRPR items. Parents of children with cancer reported higher levels of spoiling and concern about their child's health and development than comparison parents. Items assessing overprotection and emotional responsiveness did not distinguish the two groups of parents. The effect size for the group difference between mothers in the cancer versus comparison groups was significantly greater than that for fathers on one item related to worry about the child's health. Conclusion Parents of children with cancer report differences in some, but not all, domains of child-rearing, as predicted by healthcare professionals. Pediatr Blood Cancer © 2013 Wiley Periodicals, Inc.
2013
Identifier
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<a href="http://doi.org/10.1002/pbc.24556" target="_blank" rel="noreferrer">10.1002/pbc.24556</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2013
Backlog
Cancer
Child Rearing
childhood
Gerhardt CA
Journal Article
Keeley L
Long KA
Noll RB
Parenting
Pediatric
Pediatric Blood & Cancer
psychosocial
Reiter-Purtill J
Vannatta K
-
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.1399-3046.2004.00287.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1399-3046.2004.00287.x</a>
Dublin Core
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Title
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Growing up and moving on: transition from pediatric to adult care
Publisher
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Pediatric Transplantation
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Humans; Adult; Communication; Counseling; adolescent; Models; Adolescent Transitions; Continuity of Patient Care/organization & administration; Adolescent Health Services/organization & administration; Organizational; parenting; Organ Transplantation
Creator
An entity primarily responsible for making the resource
McDonagh JE
Description
An account of the resource
The development of transitional care is one of the major challenges for the twenty-first century as the survival rates and medical outcomes for child and adolescent recipients of transplants continue to improve. Such developments must include both paediatric and adult providers and is likely to require training of professionals in both arenas. Transition is a multidimensional process with transfer to adult care, only one event within that process. The aim of this paper is to present the philosophy of transition and an evidence-based approach to transitional care in terms of the need for it, proposed models of care and the evidence of the benefits of transitional care programmes. Examples of some key clinical aspects of transitional care including communication skills, parenting, self advocacy, vocation will be presented. Adherence issues will be presented in accompanying papers in this journal. Finally, potential barriers to successful transition will be explored.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1399-3046.2004.00287.x" target="_blank" rel="noreferrer">10.1111/j.1399-3046.2004.00287.x</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2005
Adolescent
Adolescent Health Services/organization & administration
Adolescent Transitions
Adult
Backlog
Communication
Continuity Of Patient Care/organization & Administration
Counseling
Humans
Journal Article
McDonagh JE
Models
Organ Transplantation
Organizational
Parenting
Pediatric Transplantation
-
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.1523-536X.2010.00457.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1523-536X.2010.00457.x</a>
Dublin Core
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Title
A name given to the resource
Swedish parents' experiences of parenthood and the need for support to siblings when a baby is stillborn
Publisher
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Birth (berkeley, Calif.)
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
adolescent; Child; Female; Humans; infant; Male; Adult; Siblings; Sweden; Stillbirth; Preschool; sibling bereavement; parenting
Creator
An entity primarily responsible for making the resource
Avelin P; Erlandsson K; Hildingsson I; Rådestad I
Description
An account of the resource
BACKGROUND: It has been argued that having a stillborn baby in the family affects older siblings more than parents realize. The aim of this study was to describe parenthood and the needs of siblings after stillbirth from the parents' perspective. METHODS: Six focus groups were held with 27 parents who had experienced a stillbirth and who had had children before the loss. The discussion concerned parents' support to the siblings, and the sibling's meeting, farewell, and memories of their little sister or brother. Data were analyzed using qualitative content analysis. RESULTS: The overall theme of the findings was parenthood in a balance between grief and everyday life. In the analysis, three categories emerged that described the construction of the theme: support in an acute situation, sharing the experiences within the family, and adjusting to the situation. CONCLUSIONS: The siblings' situation is characterized by having a parent who tries to maintain a balance between grief and everyday life. Parents are present and engaged in joint activities around the stillbirth together with the siblings of the stillborn baby. Although parents are aware of the sibling's situation, they feel that they are left somewhat alone in their parenthood after stillbirth and therefore need support and guidance from others.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1523-536X.2010.00457.x" target="_blank" rel="noreferrer">10.1111/j.1523-536X.2010.00457.x</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2011
Adolescent
Adult
Avelin P
Backlog
Birth (berkeley, Calif.)
Child
Erlandsson K
Female
Hildingsson I
Humans
Infant
Journal Article
Male
Parenting
Preschool
Rådestad I
sibling bereavement
Siblings
Stillbirth
Sweden
-
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.2012-2772" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2012-2772</a>
<a href="http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=medl&AN=23184104" target="_blank" rel="noreferrer">http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=medl&AN=23184104</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
Supporting the family after the death of a child.
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
adolescent; Child; Humans; infant; Pediatrics; Parents; mortality; Chronic disease; Siblings; Professional-Family Relations; disabled children; Death; social support; Guidelines as Topic; Physician's Role; Counseling; Suicide; Preschool; Premature; AIM; IM; Grief; sibling bereavement; Sudden; Sudden Infant Death; parenting; Substance-Related Disorders; Guilt
Creator
An entity primarily responsible for making the resource
Wender E; HEALTH COMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY
Description
An account of the resource
The death of a child can have a devastating effect on the family. The pediatrician has an important role to play in supporting the parents and any siblings still in his or her practice after such a death. Pediatricians may be poorly prepared to provide this support. Also, because of the pain of confronting the grief of family members, they may be reluctant to become involved. This statement gives guidelines to help the pediatrician provide such support. It describes the grief reactions that can be expected in family members after the death of a child. Ways of supporting family members are suggested, and other helpful resources in the community are described. The goal of this guidance is to prevent outcomes that may impair the health and development of affected parents and children.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2012-2772" target="_blank" rel="noreferrer">10.1542/peds.2012-2772</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
2012
Adolescent
AIM
Backlog
Child
Chronic Disease
Counseling
Death
Disabled Children
Grief
Guidelines As Topic
Guilt
HEALTH COMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY
Humans
IM
Infant
Journal Article
Mortality
Parenting
Parents
Pediatrics
Physician's Role
Premature
Preschool
Professional-family Relations
sibling bereavement
Siblings
Social Support
Substance-Related Disorders
Sudden
Sudden Infant Death
Suicide
Wender E
-
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 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Parental Involvement In Neonatal Critical Care Decision-making.
Publisher
An entity responsible for making the resource available
Sociology Of Health & Illness
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Sociology; Life; Interrogatives; Consultation; Social Sciences; Biomedical; Decision Making; Shared Decision; Recommendations; Medical Authority; Communication; Conversation; End Of Life Care; Public; Public Environmental & Occupational Health; End; Resistance; Training; Cooperation; Communication; Palliative Care; Decision Making; Intensive Care; Participation; Ethics; Medicine; Physicians; Parents; Conversational Analysis; Decisions; Infant; Palliative Treatment; Parenting; Infants (newborn); Decision Making; Parent And Child; Analysis
Conversation Analysis; Decision-making; End Of Life; Ethics; Neonatal; Parental Involvement
Creator
An entity primarily responsible for making the resource
Shaw C; Stokoe E; Gallagher K; Aladangady N; Marlow N
Description
An account of the resource
The article analyses the decision-making process between doctors and parents of babies in neonatal intensive care. In particular, it focuses on cases in which the decision concerns the redirection of care from full intensive care to palliative care at the end of life. Thirty one families were recruited from a neonatal intensive care unit in England and their formal interactions with the doctor recorded. The conversations were transcribed and analysed using conversation analysis. Analysis focused on sequences in which decisions about the redirection of care were initiated and progressed. Two distinct communicative approaches to decision-making were used by doctors: 'making recommendations' and 'providing options'. Different trajectories for parental involvement in decision-making were afforded by each design, as well as differences in terms of the alignments, or conflicts, between doctors and parents. 'Making recommendations' led to misalignment and reduced opportunities for questions and collaboration; 'providing options' led to an aligned approach with opportunities for questions and fuller participation in the decision-making process. The findings are discussed in the context of clinical uncertainty, moral responsibility and the implications for medical communication training and guidance.
Identifier
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DOI: 10.1111/1467-9566.12455
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
Aladangady N
Analysis
Biomedical
Communication
Consultation
Conversation
Conversation Analysis
Conversational Analysis
Cooperation
Decision Making
Decision-making
Decisions
End
End Of Life
End Of Life Care
Ethics
Gallagher K
Infant
Infants (newborn)
Intensive Care
Interrogatives
Life
Marlow N
Medical Authority
Medicine
Neonatal
Palliative Care
Palliative Treatment
Parent And Child
Parental Involvement
Parenting
Parents
Participation
Physicians
Public
Public Environmental & Occupational Health
Recommendations
Resistance
September 2016 List
Shared Decision
Shaw C
Social Sciences
Sociology
Sociology of Health & Illness
Stokoe E
Training
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Parental Physical Proximity In End-of- Life Care In The Picu.
Publisher
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
End Of Life Care; Patient; Quality; Unit; Pediatric Palliative Care; Perspectives; Cancer; Critical Care Medicine; Qualitative; Family; Intensive Care; Childs Death; Pediatric Intensive-care; Priorities; Pediatrics; Parenting
Creator
An entity primarily responsible for making the resource
Falkenburg JL; Tibboel D; Ganzevoort RR; Gischler S; Hagoort J; van Dijk M
Description
An account of the resource
OBJECTIVE:
Health professionals in PICUs support both child and parents when a child's death is imminent. Parents long to stay connected to their dying child but the high-tech environment and treatment implications make it difficult to stay physically close. This study explores in what sense physical aspects of end-of-life care in the PICU influence the parent-child relationship.
DESIGN:
Retrospective, qualitative interview study.
SETTING:
Level 3 PICU in Erasmus Medical Center in the Netherlands.
PARTICIPANTS:
Thirty-six parents of 20 children who had died in this unit 5 years previously.
MEASUREMENTS AND MAIN RESULTS:
Parents vividly remembered the damage done to the child's physical appearance, an inevitable consequence of medical treatment. They felt frustrated and hurt when they could not hold their child. Yet they felt comforted if facilitated to be physically close to the dying child, like lying with the child in one bed, holding the child in the hour of death, and washing the child after death.
CONCLUSIONS:
End-of-life treatment in the PICU presents both a barrier and an opportunity for parents to stay physically connected to their child. Parents' experiences suggest that aspects of physicality in medical settings deserve more attention. Better understanding of the significance of bodily aspects-other than pain and symptom management-improves end-of-life support and should be part of the humane approach to families.
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Cancer
Childs Death
Critical Care Medicine
End Of Life Care
Falkenburg JL
Family
Ganzevoort RR
Gischler S
Hagoort J
Intensive Care
May 2016 List
Parenting
Patient
Pediatric Critical Care Medicine
Pediatric Intensive-care
Pediatric Palliative Care
Pediatrics
Perspectives
Priorities
Qualitative
Quality
Tibboel D
Unit
van Dijk M
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Parenting In The Face Of Childhood Life-threatening Conditions: The Ordinary In The Context Of The Extraordinary
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
2016
Subject
The topic of the resource
Distress; Framework; Child; Perspectives; Cancer; Health Policy & Services; Serious Illness; Outcomes; Families; Bereaved Siblings
Life-threatening Condition; Palliative Care; Parenting; Pediatrics; Qualitative Description
Creator
An entity primarily responsible for making the resource
Mooney-Doyle K; Deatrick JA
Description
An account of the resource
OBJECTIVE:
Uncovering what it means to be a parent during the extraordinary time of a child's life-threatening condition (LTC) is important for understanding family goals, decision making, and the work of parenting within this context.
METHOD:
Qualitative descriptive methods were employed to describe the everyday experience of parenting both children who have an LTC and their healthy siblings.
RESULTS:
Some 31 parents of 28 children with an LTC who have healthy siblings participated in our study. Four themes emerged from the data that describe a parental desire to maintain emotional connection with all of their children, how parents use cues from their children to know them better and develop parenting strategies, how parents change as a result of caring for a child with an LTC, and how they strive to decrease suffering for all of their children.
SIGNIFICANCE OF RESULTS:
The findings of our study have implications for clinical practice, family-focused research, and health policy pertaining to families of children with life-threatening conditions.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1017/S1478951515000905
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
Bereaved Siblings
Cancer
Child
Deatrick JA
Distress
Families
Framework
Health Policy & Services
June 2016 List
Life-threatening Condition
Mooney-Doyle K
Outcomes
Palliative & Supportive Care
Palliative Care
Parenting
Pediatrics
Perspectives
Qualitative Description
Serious Illness