Paediatric Palliative Care And Intellectual Disability-a Unique Context
Family-centred Care; Intellectual Disability; Paediatrics; Palliative Care; Quality Of Life
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.
Duc J K; Herbert A; Heussler H S
Journal Of Applied Research In Intellectual Disabilities
2017
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).
<a href="https://doi.org/10.1111/jar.12389" target="_blank" rel="noreferrer">10.1111/jar.12389</a>
Adaptive and maladaptive behaviour in children with Cri-du-chat syndrome
Psychology; Rehabilitation behavioral problems; Cri-du-chat; trajectory; characteristics; externalizing behaviors; poor concentration; hyperactivity; impulsiveness
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.
Cornish K M; Munir F; Bramble D
Journal of Applied Research in Intellectual Disabilities
1998
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).
<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>
"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
Humans; Child; Female; Male; Qualitative Research; Perception; Fathers; Self-Help Groups; *Intellectual Disability; *Disabled Children
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.
Batchelor, Molly; Maguire, Sabine; Shearn, Julia
Journal of Applied Research in Intellectual Disabilities
2021
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).
<a href="http://doi.org/10.1111/jar.12804" target="_blank" rel="noreferrer noopener">10.1111/jar.12804</a>
Being a dad to a child with Down's syndrome: Overcoming the challenges to adjustment.
Humans; Child; Child, Preschool; Male; Infant; Middle Aged; Adult; Qualitative Research; Grounded Theory; *Fathers/px [Psychology]; *Down Syndrome/nu [Nursing]
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.
Ridding, Anna; Williams, James
Journal of Applied Research in Intellectual Disabilities
2019
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).
<a href="http://doi.org/10.1111/jar.12563" target="_blank" rel="noreferrer noopener">10.1111/jar.12563</a>
Shutting the World Out': An Interpretative Phenomenological Analysis Exploring the Paternal Experience of Parenting a Young Adult with a Developmental Disability.
Humans; Male; Young Adult; Middle Aged; Adult; Qualitative Research; *Fathers/px [Psychology]; *Adult Children; *Developmental Disabilities; *Parenting/px [Psychology]
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.
Thackeray, Lisa A; Eatough, Virginia
Journal of Applied Research in Intellectual Disabilities
2018
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).
<a href="http://doi.org/10.1111/jar.12313" target="_blank" rel="noreferrer noopener">10.1111/jar.12313</a>