Parent Support - What works - Literature Review ?· 2016-12-09 · Literature Review Parenting a child…

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  • Parent Support Literature Review

    Dr. James Galpin

    The Bridge London

  • ParentSupport

    LiteratureReview

    Parentingachildontheautismspectrumcanbeahugelyrewardingexperience(McConnell,Savage,Sobsey,&

    Uditsky,2015;Phelps,McCammon,Wuensch,&Golden,2009).Itcanalsobestressfulforavarietyofreasons,

    with parents often reporting stress levels that exceed those among parents of children with other

    developmental conditions (Craig et al., 2016;Dabrowska&Pisula, 2010; Estes et al., 2009;Hartley, Seltzer,

    Head&Abbeduto,2012;Hayes&Watson,2013).Unfortunately,thereisapaucityofprogrammesdesignedto

    bufferthestressfulexperiencesoffamiliesofautistic1childrenintheUnitedKingdom(UK).Someofthefew

    existing programmes are one-off and short-term (e.g., the National Autistic Societys 8-session EarlyBird

    programme;Shields,2001)whileothersarederivedfromtheUSorAustralia(e.g.,TriplePparentingprogram;

    see Whittingham et al., 2009). Some initial research has begun looking at the efficacy of UK specific

    programmes (e.g.BarnardosCygnetparenting supportprogramme;Stuttard,Beresford,Clarke,Beecham&

    Morris, 2016) none of these programmes have been fully evaluated for use with culturally- and

    socioeconomically-diverse families living in inner-city London, who often need sustained and individualised

    supportthatacknowledgespotentialculturaldifferencesinperceptionsofautism(Bernier,Mao&Yen,2010;

    Tincani,Travers,&Boutot,2009)andparentalcopingstrategies(Lai&Oei,2014).

    Thefocusofresearchonstress inparentsofachildontheautismspectrumhasmovedawayfrom

    looking at if they experience higher levels of stress than parents of children with other developmental

    conditionstowhythisisthecaseandwhatfactorscanhelpmitigateit(Hayes&Watson,2013).Parentsface

    multifacetedstressorsthatcanpileupandexacerbateoneanother(Ekas&Whitman,2010;Ludlow,Skelly&

    Rohelder,2011),includingmanagingbehavioursthatchallenge,alackofsupportfromfriends,familyandthe

    wider community as well as judgments from others, which parents perceive to be borne out of a lack of

    understandingof autism (Ludlow, et al., 2011). Individual factors, such as personality (Ingersoll&Hambrick

    1 Identity-first language is the preferred language of many people on the autism spectrum (see Sinclair, 1999) and their parents (Kenny et al., 2016). In this article, we use this term as well as person-first language to respect the wishes of all individuals on the spectrum.

  • 2011),optimism(Faso,Neal-Beavers&Carlson,2013;Lee,2009)andcopingstyle(Hall&Graff,2011)haveall

    been identified asmediating the stress experiences of parents. However, such are the demands placed on

    parents that external support plays a crucial role in promoting positivewellbeing (Bromley, Hare, Davison,

    Emerson,2004;Khannaetal.,2011).

    Unfortunately,theabilityofvarioustypesofexternalsupporttomeettheneedsofparentsisvastly

    under-researched (Karst & Van Hecke, 2012; Vasilopoulou & Nisbet, 2016) despite the fact that social

    support has been associated with increased positive mood (Pottie, Cohen, & Ingram, 2009) and parenting

    efficacy (Weiss, 2002) as well as decreased stress (Barker et al., 2011; Ekas &Whitman, 2010). In existing

    studiesonexternal support,parentshave reported that theyarepoorly supportedbyprofessional services,

    which are also difficult to access (Altiere, & von Kluge, 2009; Ludlow et al., 2011;Meirsschaut, Roeyers, &

    Warreyn,2010;Woodgate,Ateah,&Secco,2008).The lackofsupport tohelpmanagestresscannegatively

    impact upon parents self-efficacy (Kuhn & Carter, 2006), decreasing parents perceived ability to cope,

    increasing the impact of stressors and potentially leading to an increased sense of isolation and further

    reduction in their experience of social support (Donenberg & Baker, 1993; Schaaf, Toth-Cohen, Johnson,

    Outten&Benevides,2011).Thisineffectcreatesacyclicalprocessthatpotentiallyperpetuatesahigherlevel

    of stress experienced by parents. It is therefore vital to examine parents perspectives on the efficacy of

    existingsupportandareaswherelimitedsupportexistssoastobeabletomodifysupportsystemstoimprove

    parentalandfamilywellbeing.

    Respitesupport,(Chan&Sigafoos,2001;Harperetal.,2013)oftenreferredtoasshortbreaksinthe

    UK(PreeceandJordan,2007)andsupportfromotherparents,bothoff-andonline(Huws,Jones&Ingledew,

    2001;Mandell&Salzer,2007;Mackintosh,Myers&Goin-Kochel,2005;Wynter,Hammarberg,Sartore,Cann,

    &Fisher,2015)havebeenidentifiedbyparentsashighlybeneficial.

  • References

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    withautism.JournalofIntellectualDevelopmentalDisabilities,34,142152.

    Bernier, R.,Mao, A., & Yen, J. (2010). Psychopathology, families, and culture: autism.Child and Adolescent

    PsychiatricClinicsofNorthAmerica,19,855-867.

    Bromley,J.,Hare,D.J.,Davison,K.,&Emerson,E.(2004).Motherssupportingchildrenwithautisticspectrum

    disorderssocialsupport,mentalhealthstatusandsatisfactionwithservices.Autism,8,409-423.

    Chan, J. B., & Sigafoos, J. (2001, October). Does respite care reduce parental stress in families with

    developmentally disabled children?. InChild and Youth Care Forum(Vol. 30, No. 5, pp. 253-263).

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    Craig,F.,Operto,F.F.,DeGiacomo,A.,Margari,L.,Frolli,A.,Conson,M.,Ivagnes,S.,Monaco,M.&Margari,F.

    (2016). Parenting stress among parents of childrenwith Neurodevelopmental Disorders.Psychiatry

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    Dabrowska, A., & Pisula, E. (2010). Parenting stress and coping styles inmothers and fathers of pre-school

    childrenwithautismandDownsyndrome.JournalofIntellectualDisabilityResearch,54,266-280.

    Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X. H., & Abbott, R. (2009). Parenting stress and

    psychological functioning among mothers of preschool children with autism and developmental

    delay.Autism,13,375-387.

    Hall,H.R.,&Graff, J.C. (2011).The relationshipsamongadaptivebehaviorsof childrenwithautism, family

    support,parentingstress,andcoping.IssuesinComprehensivePediatricNursing,34,425.

    Hartley, S. L., Seltzer, M. M., Head, L., & Abbeduto, L. (2012). Psychological Well-being in Fathers of

    Adolescents and Young Adults With Down Syndrome, Fragile X Syndrome, and Autism.Family

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    experience of parenting stress in parents of children with and without autism spectrum

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  • Huws, J. C., Jones, R. S.,& Ingledew,D. K. (2001). Parents of childrenwith autismusing an email group: A

    groundedtheorystudy.JournalofHealthPsychology,6(5),569-584.

    Karst, J.S.,&VanHecke,A.V. (2012).Parentandfamily impactofautismspectrumdisorders:Areviewand

    proposedmodelforinterventionevaluation.ClinicalChildandFamilyPsychologyreview,15,247-277.

    Khanna,R.,Madhavan,S.S.,Smith,M.J.,Patrick,J.H.,Tworek,C.,&Becker-Cottrill,B.(2011).Assessmentof

    health-related quality of life among primary caregivers of children with autism spectrum

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    Lai,W.W.,&Oei,T.P.S.(2014).Copinginparentsandcaregiversofchildrenwithautismspectrumdisorders

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    Ludlow,A., Skelly,C.,&Rohleder,P. (2011).Challenges facedbyparentsof childrendiagnosedwithautism

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    Mackintosh, V. H., Myers, B. J., & Goin-Kochel, R. P. (2005). Sources of information and support used by

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    McConnell,D., Savage,A., Sobsey,D.,&Uditsky, B. (2015). Benefit-findingor findingbenefits? Thepositive

    impactofhavingadisabledchild.Disability&Society,30(1),29-45.

    Meirsschaut,M.,Roeyers,H.,&Warreyn,P. (2010).Parenting in familieswithachildwithautismspectrum

    disorder and a typically developing child:Mothers experiences and cognitions.Research in Autism

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    Pellicano, E., Dinsmore, A., & Charman, T. (2014a). What should autism research focus upon? Community

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    familiesofchildrenwithautism:Examiningtheimpactofsensoryprocessingdifficultiesonthefamily.

    Autism,15,373389

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