Shutting the World Out': An Interpretative Phenomenological Analysis Exploring the Paternal Experience of Parenting a Young Adult with a Developmental Disability.
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).
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).
Journal Of Applied Research In Intellectual Disabilities
Date
2017
Subject
Family-centred Care; Intellectual Disability; Paediatrics; Palliative Care; Quality Of Life
Description
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.
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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).
1468-3148 Duc, Jacqueline K ORCID: http://orcid.org/0000-0003-4403-9524 Herbert, Anthony Robert ORCID: http://orcid.org/0000-0002-9777-1105 Heussler, Helen S Journal Article England J Appl Res Intellect Disabil. 2017 Aug 23. doi: 10.1111/jar.12389.
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.
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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).
"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
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.
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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).