1
40
5
-
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 2017 List
Notes
<p>1468-3148<br />Duc, Jacqueline K<br />ORCID: http://orcid.org/0000-0003-4403-9524<br />Herbert, Anthony Robert<br />ORCID: http://orcid.org/0000-0002-9777-1105<br />Heussler, Helen S<br />Journal Article<br />England<br />J Appl Res Intellect Disabil. 2017 Aug 23. doi: 10.1111/jar.12389.</p>
URL Address
<a href="https://doi.org/10.1111/jar.12389" target="_blank" rel="noreferrer">https://doi.org/10.1111/jar.12389</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
Paediatric Palliative Care And Intellectual Disability-a Unique Context
Publisher
An entity responsible for making the resource available
Journal Of Applied Research In Intellectual Disabilities
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Family-centred Care; Intellectual Disability; Paediatrics; Palliative Care; Quality Of Life
Creator
An entity primarily responsible for making the resource
Duc J K; Herbert A; Heussler H S
Description
An account of the resource
BACKGROUND: Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. METHOD: This study describes the complex care of children with life-limiting conditions and intellectual disability by means of a literature synthesis and commentary with "best-practice" guide. RESULTS: As few articles concerning children with intellectual disability and palliative care needs were identified by formal systematic review, our expert consensus group has drawn from the paediatric palliative, oncology and adult intellectual disability literature to highlight common clinical challenges encountered in the day-to-day care of children with intellectual disability and life-limiting conditions. CONCLUSION: A longitudinal child- and family-centred approach is key to ensuring best-practice care for families of children with life-limiting conditions and intellectual disability. As highlighted by the great absence of literature addressing this important patient population, further research in this area is urgently required.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1111/jar.12389" target="_blank" rel="noreferrer">10.1111/jar.12389</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).
2017
Duc J K
Family-centred Care
Herbert A
Heussler H S
Intellectual Disability
Journal Of Applied Research In Intellectual Disabilities
October 2017 List
Paediatrics
Palliative Care
Quality Of Life
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1111/j.1468-3148.1998.tb00064.x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/j.1468-3148.1998.tb00064.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
Adaptive and maladaptive behaviour in children with Cri-du-chat syndrome
Publisher
An entity responsible for making the resource available
Journal of Applied Research in Intellectual Disabilities
Date
A point or period of time associated with an event in the lifecycle of the resource
1998
Subject
The topic of the resource
Psychology; Rehabilitation behavioral problems; Cri-du-chat; trajectory; characteristics; externalizing behaviors; poor concentration; hyperactivity; impulsiveness
Creator
An entity primarily responsible for making the resource
Cornish K M; Munir F; Bramble D
Description
An account of the resource
Twenty children with cri-du-chat syndrome were assessed on the Vineland Adaptive Behavioural Scales. Strengths within rather than between the adaptive domains were identified with posthoc analyses revealing the main differences to lie within the domains of Communication and Daily-living Skills. In the former domain, Receptive Skills were significantly more developed than Expressive and Written skills; and in the latter domain, Personal skills were significantly more developed than Community-based Skills. The core behavioural problems were Hyperactivity, poor Concentration span and Impulsivity. The implications of the present findings are discussed with reference to the development of effective remedial programmes that take into account the strengths and weaknesses in the adaptive and maladaptive profile of children with cri-du-chat syndrome.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1468-3148.1998.tb00064.x" target="_blank" rel="noreferrer noopener">10.1111/j.1468-3148.1998.tb00064.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).
1998
Bramble D
characteristics
Cornish K M
Cri-du-chat
externalizing behaviors
hyperactivity
impulsiveness
Journal Of Applied Research In Intellectual Disabilities
Munir F
poor concentration
Psychology
Rehabilitation behavioral problems
Trajectory
-
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
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/10.1111/jar.12804" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/jar.12804</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
"They just get it" an exploration of father's experiences and perceptions of a support group for men caring for children with disabilities and/or developmental delay
Publisher
An entity responsible for making the resource available
Journal of Applied Research in Intellectual Disabilities
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Humans; Child; Female; Male; Qualitative Research; Perception; Fathers; Self-Help Groups; *Intellectual Disability; *Disabled Children
Creator
An entity primarily responsible for making the resource
Batchelor, Molly; Maguire, Sabine; Shearn, Julia
Description
An account of the resource
BACKGROUND: Support groups available to parents/carers of children with a disability or developmental delay (DDD) are predominately attended by women. Limited data exists reporting experiences of the few male-only support groups. This paper examines experiences of fathers of children with DDD attending a male-only support group from South Wales., METHOD: All fifteen members from a support group for fathers/male carers of children with DDD were invited to take part in qualitative interviews and seven participated. The data were analysed following Braun and Clarke's (Qualitative research in psychology, 2006, 3:77) thematic framework., RESULTS: Within the group, fathers felt understood by similarly situated men, and a sense of connectivity and belonging. Fathers perceived exclusion elsewhere, including mixed-gender groups. Fathers felt permission to talk in a way consistent with their male identities, and valued receiving, and giving, support., CONCLUSIONS: Mixed-gender support groups may not meet the needs of fathers, and there are potential benefits in providing male-only groups. Copyright � 2020 John Wiley & Sons Ltd.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/jar.12804" target="_blank" rel="noreferrer noopener">10.1111/jar.12804</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).
*Disabled Children
*Intellectual Disability
2021
2023 SE4 - Parent Perspectives
Batchelor, Molly
Child
Fathers
Female
Humans
Journal Of Applied Research In Intellectual Disabilities
Maguire, Sabine
Male
Perception
Qualitative Research
Self-Help Groups
Shearn, Julia
-
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
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/10.1111/jar.12563" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/jar.12563</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
Being a dad to a child with Down's syndrome: Overcoming the challenges to adjustment.
Publisher
An entity responsible for making the resource available
Journal of Applied Research in Intellectual Disabilities
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Humans; Child; Child, Preschool; Male; Infant; Middle Aged; Adult; Qualitative Research; Grounded Theory; *Fathers/px [Psychology]; *Down Syndrome/nu [Nursing]
Creator
An entity primarily responsible for making the resource
Ridding, Anna; Williams, James
Description
An account of the resource
BACKGROUND: Historically, research exploring the impact of having a child with an Intellectual Disability (ID), has focussed exclusively on mothers. The present study aimed to investigate fathers' experiences of parenting a child with Down's syndrome (DS), their contributions, influences on family functioning and inclusion in their child's support provision., METHOD: Semi-structured interviews were conducted with 15 fathers. Interviews were analysed using Grounded Theory (GT)., RESULTS: Fathers' adjustment appeared to be on a fluid trajectory with three key categories influencing this: "Accommodating the Child," "Adapting the Parental/Spousal Role" and "Adapting Society.", CONCLUSIONS: The accounts uncovered fathers' adjustment trajectory to parenting a child with DS, concluding that despite practical and emotional challenges, fathers employed strategies to achieve positive adjustment. Fathers identified the need for services to recognize their role and involve them in their child's support provision. Implications for clinical practice and future research are discussed. Copyright © 2019 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/jar.12563" target="_blank" rel="noreferrer noopener">10.1111/jar.12563</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).
*Down Syndrome/nu [Nursing]
*Fathers/px [Psychology]
2019
2023 SE4 - Parent Perspectives
Adult
Child
Child, Preschool
Grounded Theory
Humans
Infant
Journal Of Applied Research In Intellectual Disabilities
Male
Middle Aged
Qualitative Research
Ridding, Anna
Williams, James
-
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
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/10.1111/jar.12313" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/jar.12313</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
Shutting the World Out': An Interpretative Phenomenological Analysis Exploring the Paternal Experience of Parenting a Young Adult with a Developmental Disability.
Publisher
An entity responsible for making the resource available
Journal of Applied Research in Intellectual Disabilities
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Humans; Male; Young Adult; Middle Aged; Adult; Qualitative Research; *Fathers/px [Psychology]; *Adult Children; *Developmental Disabilities; *Parenting/px [Psychology]
Creator
An entity primarily responsible for making the resource
Thackeray, Lisa A; Eatough, Virginia
Description
An account of the resource
BACKGROUND: An in-depth exploration of the experience of midlife fathers of developmentally disabled young adults (aged 19-32 years) was motivated by a dearth of research in this area (McKnight, PsyPAG Quarterly, 94, 2015, 10)., METHOD: Five fathers participated in semi-structured interviews which were subjected to interpretative phenomenological analysis (Smith, Flowers and Larkin, 2009, Interpretative Phenomenological Analysis: Theory, Method, and Research. London: Sage)., RESULTS: The final thematic structure comprises four inter-related themes. They demonstrate a high degree of concern for children's well-being; the joy adult children confers on their father's lives as well as the difficulties men experience in response to the limited opportunities available to their offspring. Importantly findings also illustrate the way in which men struggle to contend with painful emotions., CONCLUSIONS: Societal conceptions of masculinity, fatherhood and disability necessarily influence the way fathers experience the world (Yarwood, Fathering, 9, 2011, 150). It is imperative that service providers recognize the particular challenges faced by fathers, seeking ways to better engage and support them. Copyright © 2016 John Wiley & Sons Ltd.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/jar.12313" target="_blank" rel="noreferrer noopener">10.1111/jar.12313</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).
*Adult Children
*Developmental Disabilities
*Fathers/px [Psychology]
*Parenting/px [Psychology]
2018
2023 SE4 - Parent Perspectives
Adult
Eatough, Virginia
Humans
Journal Of Applied Research In Intellectual Disabilities
Male
Middle Aged
Qualitative Research
Thackeray, Lisa A
Young Adult