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 Society’s 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.Barnardo’sCygnetparenting 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)oftenreferredtoas‘shortbreaks’inthe

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

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

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