Thisqualitativestudyexploredthelivedexperiencesofbereavementandgriefin13adults withanintellectualdisability(ID).Fourthemeswhichmediatedindividuals’experienceof bereavementandgriefwereidentified:(1)Intra-andinter-personalexperiences,(2)Core beliefsaboutlifeanddeath,(3)Levelofinclusion,and(4)Continuingrelationshipwiththe deceased.Thefindingssuggestthattheparticipantsexperiencedbereavementandgriefina mannersimilartothatofthegeneralpopulation,andendorsetheroleofclearandopen communication, the facilitation of informed choice, and a culture ofinclusion.
Limited research exists about the experiences of bereavement and grief in peoplewith an intellectual disability (PWID), perhaps reflecting a tendency to shield this group fromthe realitiesofdeath(Clements,Focht-New,&Faulkner2004).Modelsofgriefdevelopedin relation to the general population have moved from stage models, consisting ofvarious predictablephasesassociatedwithtasksofgrieving(e.g.Marris,1992;Parkes,1988;Worden, 1983)tothosewhichtakegreateraccountofdynamicpsychologicalprocesses,individual differences,andthesystemicimpactofbereavement(Dent,2005;Kissane&Bloch,1994). Thesemodelssituategriefasanormalresponsetoloss(Clegg&Lansdall-Welfare,2003), however,PWIDhaveinthepast,beenconsideredunabletoexperiencefeelingsofgrief following bereavement (Hollins & Kloeppel, 1989). This was influenced by early beliefsthat theymaybeincapableofformingattachmentrelationships(Burlingham&Freud,1942)or understanding the concept of death (Hughes & Noppe,1985).
Research indicates that PWID can and do develop attachments, making them opento experiencinggrief(e.g.Clegg&Lansdall-Welfare,1995)andthatwhilesomeaspectsofgrief, suchasfinalityandnon-functionality(McEvoy,1989)andmoreabstractcausesofdeath (Mayreddi&Narayan,1993)arebetterunderstoodbythosewithgreatercognitiveabilities, factors other than level of cognitive functioning have been found to influence levelof understanding of death. This includes chronological age (Seltzer, 1989) andenvironmental factors (Kastenbaum & Costa, 1977), such as exposure todeath.
It has also been suggested that PWID may process death in the same way aschildren, based on assumptions about similarities in developmental levels (Bihm & Elliott,1982), despiteanumberofdifferencesbetweenthetwo:PWIDtendtoseedeathasanexternally influenced process, while children, from as young as seven years of age, developthe understanding that death can be an inevitable internal biological process (McEvoy,1989).
Harper and Wadsworth (1993) argue that level of conceptual understanding in noway predictstheabilityofanindividualtofeeltheemotionalimpactofbereavementordisplay emotional behaviour. As such, there is growing acknowledgement that PWID are notexempt from the experience of grief and that they exhibit behaviours that can be interpretedas manifestationsofgrief(e.g.Bonnell-Pascualetal.,1999;Hollins&Esterhuyzen,1997).Dodd, Dowling,andHollins(2005)conductedasystematicreviewandconcludedthatPWID,like others, may show emotional reactions to grief such as sadness, anxiety, anddistress; behavioural manifestations such as increased crying, hyperactivity, inappropriate speechand challenging behaviour and mental health problems such as depression, mania andpsychosis.
WhilePWIDarenothomogeneous,thisresearchsuggeststhatmanygrieveinamanner similartothegeneralpopulation(Harper&Wadsworth,1993;Oswin,1991)andthatcognitive impairmentdoesnot,initself,preventtheexperienceofgrief(Brelstaff,1984).Thereis, however,alsoevidencethatPWIDaremorelikelytoexperiencecomplicationsduringthe grieving period than the general population, due to factors such as secondarylosses, communication problems, difficulties with tasks of grieving, and issues aroundinclusion.
Significant secondary losses for PWID include the loss of their primary carer andthe related loss of their home (Hollins & Esterhuyzen, 1997; MacHale & Carey, 2002), as wellas fewervisitorsanddaytimeactivities;changesinroommateandemploymentstatusandless money (Harper & Wadsworth,1993).
A second complicating factor can be the reluctance to communicate with PWIDabout deathandgrief(Murray,McKenzie,&Quigley,2000;Oswin,1991)andsomeindividualsmay never be informed of a death (Oswin, 1991). Carers have reported feeling they lack theskills required for tackling the subject of grief or, having had appropriate training, feeling a lackof confidenceintheirabilitytoputsuchtrainingintopractice(Dodd,McEvoy,etal.,2005; Dowling,Hubert,White,&Hollins,2006;Murrayetal.,2000;Watters,McKenzie,&Wright,
2011). They have also reported believing that if they broach the subject of grief theindividual willrequirealevelofsupportthatexceedsthatwhichtheyfeelabletoprovide(MacHale, McEvoy, & Tierney, 2009). All of these factors may lead to PWIDexperiencing disenfranchised grief. This refers to situations where individuals do notreceive acknowledgementorsupportfortheirlossoraredeniedtheopportunitytopubliclymourn (Doka,2002).
RelatedtothisisthereluctancetoincludePWIDintheritualsofdeath,suchas attending a funeral (Harper & Wadsworth, 1993; Hollins & Esterhuyzen, 1997; Oswin,1991), despiteevidencethatthiscanbehelpfulinaidingunderstandingofdeath(Raji,Hollins,& Drinnan,2003)andnormalisingtheemotionalexperienceofgriefthroughobservingthe mourning of others (De Ranieri, Clements, & Henry, 2002). PWID also report that theyfind inclusion in rituals helpful (Gilrane-McGarry & Taggart, 2007) and supportedinvolvement hasbeenshowntoreducebothrepetitivequestionsaboutthewhereaboutsofthedeceased,and the frequency and intensity of challenging behaviour (Sheldon, 1998). Others have foundthat, if managed poorly, ritual involvement can result in more problematic grief, thought to bedue to insufficient preparation beforehand or explanation and communication following (Doddet al.,2008).ThisisreiteratedbyCleggandLansdall-Welfare(2003)whostressthatinvolvement aloneisnotsufficientandthat,forparticipationtobebeneficial,ageneralisedcultureof emotional support isrequired.
Insummary,researchsuggeststhatPWIDcananddoexperiencebereavementand grief, and that many have grief reactions which are consistent with those of thegeneral population. However they may experience additional challenges associated with grief dueto factorssuchassecondarylosses,lackofcommunicationaboutdeathbyothersandlimited inclusion in the rituals surrounding death. Despite the growing body of research in thisarea, muchofithasbeenindirect,basedonfamilyorcarerreportsratherthanontheexperiencesof
PWID(Booth&Booth,1994).ConsistentwiththefocusontheinclusionofPWIDinall aspects of society, the present study aims to explore the lived experience of bereavementand grief for a group of individuals withID.
Procedure Design: The study adopted a qualitative methodology, usinginterpretative phenomenological analysis (IPA) of direct semi-structured interviews. IPA is concernedwith investigating how people make sense of major life experiences (Smith & Osborn, 2008)and has previously been used effectively to access the views of PWID (e.g. Cookson &Dickson, 2010).
Ethical issues and approval: Ethical approval was granted by theeducational establishment of the second author and the local National Health Service (NHS)Research and Development Department. Given the potential vulnerability of PWID, a numberof ethical issues were considered. To reduce potential acquiescence, the participants onlymet the researcher once they had already expressed their interest in participating via a keyworker. To ensure informed consent, all participants received an accessible informationsheet describing the full implications of being involved in the research, including that thetopic could be upsetting. Informed consent was obtained anew for each interview session.The emotive and possibly distressing nature of the subject matter covered in the interviewswas considered in the context of the need to be inclusive and give PWID the opportunityto express their perspective. In this context and following McCarthy (1998), it wasconcluded that the willingness of the PWID to participate and share their experience transcendedany presumed negative effects. In addition, it was made clear that if participantsbecame
distressed, the first author would stop the interview and offer support. Toensure confidentiality, at the point of transcription all identifying data was removed fromthe digitally recorded interviews and a pseudonym was allocated to each participant.Following transcription, the original recordings weredestroyed.
A purposive sampling approach was used. Participants were included if theywere aged over 18, able to give informed consent, had the cognitive and communication abilitiesto participate and had experience of the death of a close relative, friend or staff memberwithin the last 3 years. Participants were excluded if participation was deemed to be detrimental,for example if the person was very recently bereaved or showed extreme emotionaldistress.
Participants were recruited through day service providers in Scotland. Service managersand key-workerswereprovidedwithinformationaboutthestudyandaskedtoidentifypossible participantsandtosendthemanaccessibleinvitationletterinvitingthem,ifinterestedin participating, to meet with the first author to allow her to discuss the study, answerquestions andobtaininformedconsent.Afurtherinterviewwasthenarrangedtoconducttheresearch,at atimeandlocationoftheparticipant’schoice.Asemi-structuredinterviewformatwaschosen asstudieshaveshownthatPWIDcanbenefitfromsomelevelofstructurewhenbeing interviewed (Gilbert, 2004). Interviews were recorded using a digital voice recorderand subsequently transcribed, removing all identifiabledata.
The first author read each transcript a number of times to familiarise herself withthe data. In line with IPA recommendations (e.g. Smith & Eatough, 2007), she took initialnotes whichinformedthetranscriptcodingprocess.SheusedtheNVivo9softwaretocodetranscripts according to identified units of meaning. These were categorised as emergent themeswhich werethenconsideredasawholeandorganisedintointerconnectedhierarchies.Eachinterview was analysed individually, before comparative analysis was carried out between interviews,
allowing an overall group analysis, while still maintaining the value and importance ofeach individual participant’sexperience.
The data analysis process was assessed using the quality criteria proposed byYardley (2008):sensitivitytocontext;commitmentandrigour;transparencyandcoherence;andimpact andimportance.
Sensitivitytothetheoreticalandsocio-culturalcontextwasaddressedbythefirstauthor carryingoutareviewofrelevantliteratureandreflectingonthepowerdynamicswithinthe researchrelationshipandhowitmightimpactthestudy’sfindings.Theliteraturereview confirmedthepotentialimpactandimportanceofthetopicandprovidedastrongargumentfor the need for inclusive research which could contribute to the knowledge base and helpinform practice.Whilethepreviousresearchinformedthestudydesignandareaofinterest,theauthors did not adopt a specific theoretical position based on it when conducting dataanalysis.
In order to evidence commitment and rigour, purposive sampling was used toensure the sample was appropriate, suitable and homogenous. Triangulation of data was usedto compare and refine interpretation of individual participantaccounts.
Transparencyandcoherencewereaddressedbythefirstauthorensuringclearand unambiguousdocumentationatallstagesoftheresearchprocess,includingawrittenreflection on any internal or external influences, which may have affected either the collectionor interpretation of data. Independent colleagues regularly reviewed the research processand sample interview transcripts and agreed the themes andsubthemes.