Social Support Internetworks

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SOCIAL SUPPORT"INTERNETWORKS,"CASKETS FORSALE, AND MORE:THANATOLOGY ANDTHE INFORMATIONSUPERHIGHWAYCARLA J. SOFKAPublished online: 29 Oct 2010.

To cite this article: CARLA J. SOFKA (1997) SOCIAL SUPPORT"INTERNETWORKS," CASKETS FOR SALE, AND MORE: THANATOLOGYAND THE INFORMATION SUPERHIGHWAY, Death Studies, 21:6,553-574, DOI: 10.1080/074811897201778

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¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥ ¥SOCIAL SUPPORT ª INTERNETWORKS,º CASKETS

FOR SALE, AND MORE: THANATOLOGY AND THE INFORMATION SUPERHIGHWAY

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CARLA J. SOFKA

School of Social Welfa re, University of Albany, Albany, New York, USA

A u n iq ue in d i c a t o r o f c ha n ge i n o u r c ul t ure ’ s o p e nn e s s t o and in t e re s t in d e a th ,

d y i n g , a n d b e re ave m e nt i s t h e a va i l a b i l i t y o f ª t han a t e c hno l o gy º : t e c hno l o g i c a l

m e c h a n i s m s s u c h a s i n t e r a c t i ve v i d e o d i s c s a n d c o m p u t e r p ro g r a m s t h a t a re

u s e d t o a c c e s s inf o rm a t i o n o r a i d in l e a rni ng a b o ut t han a t o l o gy t o p i c s . T h i s a rt i-

c l e de s c r ib e s re s o u rc e s ava i l a b l e t h ro ugh s o c i e t y ’ s l a t e s t and m o s t w ide l y a c c e s s i b l e

t y p e o f t h a n a t e c h n o l o g y, t h e I n t e r n e t a n d W o rl d W ide W e b . T h e c o n c e p t u a l

f r a m e w o r k o f m e d i a t e d in t e r p e r s o n a l c o m m u n i c a t i o n i s u s e d t o i l l u s t r a t e s i t e s

a va i l a b l e a s r e s o u rc e s f o r s o c i a l s up p o r t . A dd i t i o na l c a t e go r i e s o f t h an a t o l o gy

s i t e s , i nc l ud in g n a r r a t i ve , c o m m e m o r a t i ve , e x p re s s i ve , and e x p e r i e nt i a l s i t e s , a re

d e f i n e d . I m p l i c a t i o n s f o r t h e us e o f t h e s e r e s o u rc e s i n c l i n i c a l p r a c t i c e , d e a t h

e d u c a t i o n , a n d re s e a rc h a re c o n s i d e re d .

Gone are the days when avenues for exploring issues of dea th,dying, grief, and bereavement were dif ficult to find. Forums fordiscussion among professionals and laypersons abound, seminars,c o n f erences, and support groups being commonplace. These for-merly taboo topics now merit their own section heading amongself-help title s in most bookstores. Recently, thana techno logy Ðte chnological re sou rces such as videos, computer-a ssisted instru c-tion programs (e.g., one that simulates being diagnosed w ith a ter-m inal il ln ess ; Lambrecht, 1990), and in teractive videodiscs thatcan be used to gain information about topics in thanatology Ð is

A ddress cor respondence to Carla J. Sofka, School of Soc ial We l fa re, University ofA lbany, 135 Wes tern Avenue, Albany, NY 12222.

Death Studies, 21: 553± 574, 1997Copyright q 1997 Taylor & Francis

0748-1187/97 $12.00 ` .00

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being used to bring these subjects into educational and ser vice set-tings as well as the home. This artic le explores a unique indicatorof change in our culture ’s openness to and interest in these top-ics by presenting an over view of society ’ s most easily accessib letype of thanatechnology, the World W ide Web and the Intern e t .

The World W ide Web is a complex system that dissem inatesin f o rmation th rough the Internet, a network of interc o n ne c tedcom pu ters. Ind iv iduals and organ izations s tore inform ation incompu ter ® les that are accessible via a connection to the Intern e tth rough the use of a computer modem. Just as businesses and re s-idences have a unique mailing address, each site on the Wo r l dWide Web has a unique combination of letter s and characters (au n i f o rm re s o u rce locator, or URL) that inform s your computerhow to connect to the location at which the information is store d .(URLs re p o rted in this article are subject to change as a result ofc ircum stances beyond the control of the author. A Web browser ors e a rch engine may be used to locate any site whose URL haschanged. URLs for s ite s descr ibed here are provided in theAppendix.) This article provides an introduction to the types ofthanato logy re so u rces available on the Web, including social sup-p o rt re so u rces for individuals and their families who are cop ingw ith life-th reaten ing il lness , the p rocess of dying, or grief.Implications for c lin ical practice, death education, and thanato l-ogy re sea rch are also discussed .

Resources for Social Support

O pportunities to gain social support on the Internet and the Weba re num erous and diverse, creating the potential for dynam icª social support Internetworksº among individuals who use theseinnovative computer re so u rces. Three types of social support areavailable: informational or guidance support, emotional or affe c-tive support, and instrumental or material support.

I n fo rm ation al suppor t (S chae fe r, Coyne, & Lazaru s, 1981),o r gu idance support (Bar rera & Ainlay, 1983), involves sharingadvice, suggestions, d irectives, or factual information that a per-son can use in coping with personal and environmenta l p rob lem s .Emotional or affective support consists of behaviors or acts thatinvolve the provision of caring, love, empathy, and tru st (Cobb ,

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1976; Pattison, 1977). Instrumental or material aid involves thep rovision of tangible re so u rces such as ® nancial assistance or phys-ical objects for use in care or the provision of ser v ices (Gott lieb ,1978; House, 1981; Pattison, 1977). While these basic de® n i tio n so f socia l support have been operationalized for use in clinica lwork and re sea rch (Streetcar & Franklin, 1992), the developmentof compu ter technology and creative applications for this tech-nology creates the need to expand our conceptualization of them echan ism s th rough which socia l suppor t can be pro v id ed .Scholars in the field of communications have ar ticulated a theo-retical framework that describes the role of technology in prov id-ing social support. A discussion of this framework and examples ofthanato logy-oriented social support re sou rces on the Web follow.

M e d i a t e d I n t e rp e r s o n a l C o m m u n i c a t i o n

M ediated interpersonal communication is a general categor y usedto describe any situation in which a technological medium is intro -duced into interpersonal interaction (Cathcart & Gumpert, 1990).Several specific types of mediated interactions that prov ide emo-tional, in formational, and instrumental social support are re p re -sen ted on the In te rnet and the Web. These re s o u rces and thepotential bene fits of their use in clinical work w ith clientst h roughout the il lnes s tra jec tor y or bereavement p rocess m er itc on sidera tion .

I nt e rp e r s o na l M e d ia t e d C o m m unic at i o n f o r E m o t i o na l S upp o r t. The ® rs ttype, interpersonal mediated communication, ª refers to any person-to-person interaction where a medium has been interposed to tran-scend the lim itations of tim e and spaceº (Cathcart & Gumpert ,1990, p. 44). In the examples that follow, the medium to facilitateinteraction is a computer equipped with a modem . Par tic ipa tionin a chat group, discussion group, or news group allows individualsw ith common life experiences or mutual interest in a topic to com-municate through the use of electronic mail (e-mail), responding tomessages at any time of the day or night. Responses can be posted toall participants in the group or may be sent privately to a particularindividual. News groups or bulle tin boards including the words u p p o r t in the group name (e.g ., a lt.support.gr ie f) are likely to

T ha na t o l o gy an d t h e I nf o rm a t i o n S u p e rh i g h w a y 555D

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incorporate a supportive component to the discussion. For exam-ple, ª grief chat,º sponsored by Rivendell Resourc es (http :// r iven-d el l .o rg), is a general discussion list for any topic related to death,dying, bereavement, or other major loss. There are also supportg roups for speci® c types of losses (i.e., spouses, parents, childre n ,siblings, pets). Individuals simply follow the directions posted at thissite to join the chat group and check their mailbox for re sp on se sf rom other members of the group .

On-line support groups, also known as computer-m ediated sup-p o rt groups (Weinb erg, Schmale, Uken, & Wessel, 1996), prov idefo rum s for communicating w ith other individuals to share experi-ences and coping strategies. These groups can simulate a traditionals up p ort group by occurring in ª real time,º taking place at a re g u-larly scheduled tim e during which conversations are interactive,individuals typing responses to questions or comments made by oth-ers who have logged into the group via computer modem.

Several strategies are recommended to locate on-line supportg roup s. F irst, w ell -known com mercial prov iders (e .g ., Am er icaOnline, Prod igy, Compuser ve) may offer on-line support gro u p srelated to thanatology topics. Check the menu of ser vices availableth rough your current provider or contact a customer ser vice re p-r esen ta tive to inqu ire about the availab ility of on-l ine supportg roups when shopping for a pro v id e r. Second, pub lications ornewsletter s specific to a topic or issue may include art ic les o rcolumns describ ing on-line re sou rces on the Web .

P e r s o n - C o m p u t e r I n t e rp e r s o n a l E n c o u n t e r s f o r I n f o rm a t i o n a l S u p p o r t .

The second relevant categor y of mediated interpersonal commu-nication is a person-computer interpersonal encounter. This typeo f encounter inc ludes s itu ations in which com pu ters ser ve asin terpersonal p roxies, with an individual interacting w ith a com-puter program that simulates dyadic communication (Cathcart &G um pe rt, 1990). For example, the Comprehen s iv e H ea lthE nhan c em ent Support System (CHESS) is an interactive com-pu ter sy stem that conta ins in fo rm ation , soc ia l support, andp roblem -solv ing tools (M cTavish et al., 1994). Although this pro -gram was not available on the Internet or the Web when this art i-cle was written, some Web sites provide opportunities for a sim i-lar type of interaction.


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Spon so red by ser vice providers and organizations or cre a tedby individuals, numerous sites for informational support are avail-able. When working w ith individuals coping w ith the diagnosis ofa life-th reaten ing or terminal illness, it is not uncommon to hearc on ce rns about the lim ited time availab le for direct com munica-tion with doctors or the dif ® culties in ® nding current inform a tionabout the illness and treatment options. Web sites containing fre -quently asked questions (FAQs) and m ed ica l in form a tion cans e r ve as an adjunct re s o u rce to be used in conjunction with theadvice and guidance of a physician. For example, clients copingwith cancer can benefit from accessing CancerNet, a product ofthe International Cancer Information Center, or OncoLink, devel-oped by the University of Pennsylvania Medical School. These siteso ffer in fo rmation to cancer patients and their caregivers abou tcancer d iagnoses , poten tia l trea tm ent op tion s , p sy chosoc ia laspects of the cancer experience, and re s o u rces for coping andsuppo rt.

O ppo rtunities are also available for computer-m ed iated dis-cussion w ith professionals. A t one such site, individuals can par-ticipate in a live interactive chat to discuss mental health issuesw ith Dr. John Grohol at spec ified times. Creation of a ª questionand answer boardº designed to allow individuals to post queries viae-mail for response by exper ts in the field of death, dying, andb e reavement is being considered by RTS Bereavement Ser v ices.C linicians and clients can access Web sites that prov ide descr ip-tions of availab le ser vices and re so u rces. In addition to inform a-tion about formal ser vices such as medical treatment or hospice,these on-line directories may describe opportunities for inform a lemotional support through self-help or support groups. The typesand speci® city of information var y signi® cantly, in¯ uenced by thegoal and purpose of the Web site as well as sponsorship of that par-ticular site (e .g., a national organization, local agency, nonpro f i tg roup, or individual). Sites may also include automatic connec-tions to other relevant s ites (ª hotlinksº ) that can be accessed viathe click of a mouse. Several sites have been designed to assist indi-v iduals in locating in form ationa l and supportive bere a v em en treso u rces quickly. Both GriefNet and the Bereavement Resource ssite, developed by Arm stong Funeral Home, are excellent p lacesto begin accessing these re so u rces on the Internet and the Web .


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P e r s o n - C o m p u t e r I n t e r p e r s o n a l E n c o u n t e r s f o r I n s t r u m e n t a l S u p p o r t .

While it is traditional to speak directly w ith funeral directors orm em orial societies for p re-need p lann ing o r at-n eed assistancefollowing the death of a loved one, it is important to note the avail-ability of sites assisting consumers w ith a variety of decis ionsrelated to the funeralization and memorialization process. In addi-tion to education about the process of planning a funeral and theability to purchase caskets, sites offer information about crem ation( th e In te rnet Crem ation Socie ty ) and p roducts to assist w ithmemorialization (e.g., crem ation jew elr y or memorial books; avail-able through the Memorial Galler y ) .

Using a tone that does not re ¯ ect the philosophy or attitude ofmost death profess ionals, Stra l (1996) described the Web ’s firstª virtual funeral homeº (the Howard Funeral Home site):

Visionaries who prophesy the bene® ts of the Information Superhighwaytou ching ever yone from cradle to grave can res t com fortab le, knowingat least one end is now covered. The per fect place for compulsive plan-ners or the morb idly fixated , the first funera l home on the In ter n e to ffers answers to the obvious and not-so-obvious questions, as well as at ruly unique shopping exper ience. The assortment of caskets is actu-ally quite nice, and gives the Net’s vampyres a good selection of picture sto swipe and use for their virtual daytime res ting spots. (p. 415 )

Sites such as these may assist in decreasing the sense of myster yand taboo that has surrounded the funeral indu str y. Individualswho need such ser vices or those who are simply curious may visitthese funeral homes in cyberspace at their convenience.

N a rr a t i ve , C o m m e m o ra t i ve , E x p re s s i ve , and E x p e ri e nt ia l S i t e s

While the follow ing types of sites do not appear to be capture dw ithin the framework of mediated interpersonal communication,they do make important contributions to the value of the Intern e tand the Web as a re s o u rce for death professionals in their workwith clients, other professionals, and students. These sites includena rrative sites, commemorative sites, expressive sites, and experi-ential sites.

Narrative sites are de® ned as those that include the telling ofa stor y or descriptions of a personal experience w ith illn ess or


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loss. Prior to his death on May 31, 1996, Timothy Lear y ’s homepage provided the most highly publicized example of a narrativesite. In addition to menta l and physical status re p o r ts , Lear ydescribed his activities to achieve ª hi-tech designer dyingº and hise f f o r ts at pain control, which included a menu of his averagedaily intake of neuroactive drugs. A sim ilar site documented thes t r uggle of Austin Bastable, a Canadian who fought to legalizephysic ian -a ssisted suic ide until his death by assisted suic ide onM ay 6, 1996. Because this site is sponsored by the Right to DieSociety of Canada, there is an advocacy component, sensitiz ingr eaders to the lega l and policy-orien ted issues involved in theind iv idual ’ s experience .

Other s ites include narratives about grief and loss situationsthat are more commonplace, such as ª A Place to Honor Grief.ºA t this s ite, sponsored by social worker Tom Golden , bere av edindividuals can read about others who have experienced similarlosses. The site could also be described as a commemorative site,one that includes personal stories but also incorporates aspects ofm em or ialization and ritu a l. In addition to opportu n itie s todescribe the life and death of a signi® cant other (human or pet)th rough the creation of a memorial, these sites allow an individualto participate in a variety of meaningful activities and rituals.

The World W ide Cemeter y is one of the most impressive sitesfor memorialization of a loved one. Individuals can erect a per-manent monument to a loved one for a nominal fee (less than $10at the time of publication). These memorials can include images(photos, artwork) and sound, giving visitors an opportunity to seeand potentially hear things that provide a connection to the life ofthe deceased. The element of ritual is incorpora ted by allow ingvisitors to leave ¯ owers at a particular grave site or for all individ-uals in the cemeter y.

The Pets Grief Support Page provides an opportunity for thosegriev ing the illness or death of a pet to commemorate the life oftheir companion animal and participate in a weekly ritual. Candlec e remonies are held each Monday night at a pre d e te rm ined time,allowing persons with a common loss to join in spirit for support.The site also contains information about on-line support gro u p sand the text of the Rainbow Bridge stor y, an answer to the ques-tion ª Where do our pets go when they die?º


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E xp ressive s ites are forum s for the expres sion o f th oughts,em otion s, and exper iences through the u se of writing , poetr y,a rtwork, and, potentially, music or sound. Individual home pagesm ay also incorporate photographs as a means of cap turingmoments in time or ideas. For example, the use of creative ar t-work by children as a means of coping with illness or grief is cap-tu red by the galler y of pediatric oncology patients’ artwork w ithinthe OncoLink site . This un ique co llec tion , sponsored by theUniversity of Pennsylvania Cancer Center, provides an outle t forthe children as well as a place for re ¯ ection by others.

In response to highly public ized traged ies or the death of awell-known individual, sites have been created to provide oppor-tun itie s fo r the expression o f condo lences . For exam p le , anIn te rnet sympathy card was created for victims and sur vivors of theOklahoma City bombing. Follow ing the assassination of Y itz hakRabin, a Web address to send condolences to Rabin’s widow waspublicized in stories run by the Associated Press. Messages of sym-pathy and support can be expre ssed immediately, as evidenced bythe receipt of more than 150,000 e-mail messages on Web site sdevoted to condolences for the family and friends of TWA Flight800 victim s w ithin 2 weeks of the tragedy (Jerom e, Du ignan-Cabrera, Arias, & Longley, 1996). One example is a site devoted tothe victims from M ontoursville, Pennsylvania.

Humor has been de® ned as the mental faculty of discovering,e xp ressing, or apprec iating the ludicrous or absurdly incongruou sor as an instance of being comical or amusing. While most wouldnot de ® ne impending death, events involv ing loss, or the experi-ence of grief as amusing or com ical, the existence of ª ga llowshumorº certainly indicates the need for comic relief from the anx-iety generated by these serious subjects. Brain (1979) supports thisnotion with the statement that ª evidently we laugh at what we ® n dmost threaten ingº (p. 22). Canonical joke lists often include jokesabout death professionals, particularly doctors, nurses, mortic ians,and coroners. H umor archives frequently conta in ª s ick jokecyclesº precipitated by highly publicized tragic events. Individualss e a rch ing for thanato logy information on the Internet and theWeb are likely to encounter s ites that include examples of darkh um o r, some of which may be offensive to those not seeking it out.A rela tively innocuous site called ª The G raveyard º conta in s


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h u m o rous epitaphs and may come in handy at Halloween.H owever, some sites containing gallows humor can also be quiteg ruesome. For example, visitors to ª The Bonesº can see and lis-ten to a cast of skeleta l characters partic ipate in a new scenarioeach month. One scenario involves a game show called ª Cause ofDeathº during which the contestant must determine how an indi-vidual died by using investigative techniques (e.g., a chainsaw withsound e f fec ts ). While some o f these s ites inc lude user- f r iend lyno tices o f poten tia l ly ob jectionab le content, one m ay stum b leupon offensive mater ial without warn in g .

Experiential sites provide an opportunity to explore one’ s ownr eactions to or atti tudes abou t a thanato logica l issue or top ic.Individuals can confront their own mortality through The DeathClock. This site uses ® g u res on the average life span of a human toestimate how many seconds a visitor has left to live, forc ing theperson to consider the implications of lim ited time in this life. Thec reator of the page, Raymond Camden, also notes that ª as anadded bonus, the page w ill automatically update itself ever y 10 orso seconds, so you can keep a running meter on your desktop atwork.º While relativ ely rare at this time, it is anticipated that expe-r ientia l sites w ill become more common as individuals becomem o re fam iliar w ith the program m ing sk il ls re q u i red to cre a t ethese sites. For example, a site could provide an individual with asimula ted loss experience through the use of a personalized sce-nario, questions to which an individual would respond, and audioor video segments to enhance the reality of the experience.

These exam ples are only a small sample of sites cur r en t l yavailable for informational and emotional support or comic re l ie fon the Internet and the Web. For assistance in locating additionals ites , a variety of publications (Internet or Web ªYellow Pages,ºd irectories, or gu ides) are available in the computer sec tions ofb o o k s to res or public libraries. It is common to find inform a tio nabou t l i fe -threa ten in g o r term inal il ln esse s such as cancer orA IDS under the topics of health , medicine, diseases, and disor-ders. ª Death and dyingº and ª griefº are occasionally listed as sec-tion head ings in the tab le s of conten ts of these pub lications.Listings for re sou rces on these topics are also likely to be includedin sec tions tit led soc ia l issues, socio logy, and self-help/m en ta lhealth. These top ics and others, such as euthanasia , su ic ide,


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funerals , and cremation, may appear separately in the index ofthe pub lication.

Those who are motivated to seek information relevant to a spe-cific need or who are simply interested or cu rious can explorethanatology top ic s th rough severa l other avenues. Commerc ia ls earch engines may have thanatology sites with multiple hotlinks.For example, Ya h o o ’s Culture & Society categor y has a ª deathºsubsection includ ing hotl inks to s ites concerning topics such ascapita l pun ishm ent, cemeter ies, crem ation , euthanasia , funera lcompanies, hospice, re inca rnation, and suicide. Perhaps the mostc om p rehensive collection of sites related to death, dying, and griefis available through the WEBSTER’s s ite, which included 15printed pages of sections with hotlinks at the time this article waswritten. These two sites are excellent places to start for those learn -ing to use the Internet and Web .

Implications for Clinical Practice and Death Education

The Web and the Internet are becom ing widely used re s o u rc es ,and this trend of rapid growth and expansion is expected to con-tinue. New mu ltimedia (audio and v ideo) capab ilit ie s of theIn ternet and the Web will signi® cantly increase the value of thesere sou rces for use in clinical practice and death education. Thesefactors present an opportunity for exposure to topics rela ted tothanato logy through th is technologica l medium unpara lle led byany other re sou rc e .

I n f o rm a t i o n a n d R e f e r r a l

C lin ic ians and death educators have trad itionally pre s e n te dre so u rces for information and re f e rral to clients and students inthe form of telephone numbers to call for additional assistance,b ro c h u res or direc to rie s, or b ib liograph ic re f e rence l is ts .Fru strations inherent in these methods of information and re fe r-ral include inaccurate or outdated information shortly after pub-lication, printing and distr ibution costs that may be proh ib i tiv e ,and the tim e lag between identification of bibliographic mater i-als and receipt of these item s through com m ercial providers orlib rar y ser vices.


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I n f o rmation availab le on the In ternet and the Web is oftenª state of the artº because content can be updated frequently andrapidly and there are no printing and mailing costs. Individualscan seek and access informational support any time of the day ornight, receiving responses in significantly less tim e and at poten-tially less expense than would be involved in traditional searc h e sor requests .

B e n e ® t s f o r the B e re a v e d

In addition to advantages in the information and re f e rral pro ces s,th e re are potential c lin ical bene® ts to consider. As previously dis-cussed, sites on the Internet and the Web have created a newg en re of re sou rces for use by the bereaved as they cope with issuesof grief and loss. The follow ing examples illustrate only a few ofthe positive consequences that may result from using these thana-technology re so u rces. Commemorative sites or inclusion of suchmateria ls in an individual home page may provide cathartic out-lets for the expression of grief that are not available through tra-d itional m eans. Development of a commemorative site m ay behelpfu l in situations in which a body was not re co v e red or geo-graphic distance to an actual grave site presents an ob stacle tothe process of mourning a death.

Feelings of iso la tion may be decreased by vis iting nar ra tivesites and reading the stories of others experiencing similar losses.Of particu lar interest is the use of the Internet and the Web as as ou rce of affective support for those coping w ith disenfranchisedgrief. On-line support groups and the availability of commemora-tive sites that validate disenfranchised loss situations, such as AIDS-r ela ted death, suic ide, or pet bereavement, may validate them ou rn e r ’s experiences in ways not available through trad itionaltherapeu tic ser vices or re s ou rc es .

O pportunities to learn about and normalize reactions to lossmay provide reassurance during dif ® cu lt tim es of adjustm ent andchange. In addition to p roviding these types of oppor tu n i t i e s ,chat groups also elim inate one traditional barrier to partic ipa tionin groups: schedule con¯ icts. While participants in chat groups oron-l ine support groups must have access to computer equipmentand a connection to the Internet through a prov ide r, part ic ipa-


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tion in these types of groups is not af fected by access to trans-p o rtation or lim itations in physica l mobility. Ano ther poten tia ladvantage is the opportunity to rema in anonym ous (We in b e rget al., 1996).

R e s o u rc e s f o r D e a th E d uca t i o n

A lthough death education courses and community -based oppor-tun ities to learn abou t thanato logy-related topics are becom ingin c reasingly availab le, sites on the Web and the Internet pro v idei n f o rm a tion a l su p po r t to individuals who live in communitiesdevoid of these re s o u rces. For example, students whose educa-tional institu tion does not of fer a death education cu rr ic u l umcan cons ider the op tion of earn ing trans fer c red i ts through acourse on grief as a family process developed by Kathleen Gilbertand o f f e red by Ind iana University. In te ractive bere a v em e n tcourses for volunteers have a lso been designed . A s pre v iou s lyno ted , som e s ite s conta in edu cationa l in fo rm a tion abou t theb e reavem ent process or refer indiv iduals to newsletters or pub-l ications availab le from national organ izations o r sup por tg ro u p s .

Sites may facilitate access to materials rela ted to advance dire c-tives (C ho ice in Dy ing) or conta in thanatology-spec ific on-l inelibraries rela ted to physician-assisted suicide (DeathNet). Thana-to logy in fo rmation is also available through ind irect av enues.Sea rching news group s that contain inform ation abou t spec if icc u ltu res (soc. ______ lists) or sites rela ted to cultural diversity mayp rodu ce in fo rmation about be liefs and practices related to ill-ness, death, funeral rituals , and the afterlife . On-line libraries insociology or other archival sites may contain similar re sou rces, butthese avenues req u ire patience, perseverance, and potentially con-siderable expense as a result of the amount of time re q u ired foron-line search in g.

At the present time, it is dif ficu lt to estim ate the degree towhich the In ternet and the Web are being used as re s o u rces fordeath education. Development of a m echan ism to monitor thist rend and strategies to evaluate the effectiveness of death educa-tion via this technology deser ve attention .


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P ro f e s s i o n al R e s o urc e s

Clinicians and death educators can also turn to the Web to locateres ou rces for profess ional growth and development. Inform a tionabout conferences, cert i ® cation programs, and other pro fes s ion alr e s o u rces available to members of the Association for DeathEducation and Counseling can be found at the association’ s homepage. Ind iv iduals seeking pamphlets or l iteratu re about su icidecan visit the home page of the Suicide Information and EducationCen tre. In addition to information about the largest English lan-guage su ic ide in form ation re s o u rce cen ter and librar y in theworld , Suicide Information and Education Centre caregiver work-shop schedu les are also available. The site developed by theP roject on Death in America contains information about upcom-ing events and exhibits nationwide and about funding opportu n i-ties for re sea rc h .

C h a l l e n ge s a n d C a u t i o n s

While the advantages inherent in this technology are sign i® c an t,ind iv iduals using these re s o u rces must recogn ize severa l chal-lenges and cautions. Perhaps the biggest challenge is the fact thatthe Internet and the Web are constantly changing. It is d if f ic u l tto predict whether or not site addresses will remain the same oreven whether sites w ill continue to exist over tim e. Uniformre c o rd locators are subject to change if commercial prov id e r sm ake changes in their ser vice network or the owner of a siteswitches to a new commercial prov ider.

Technology used to access and construct sites on the Web isconstantly expanding and improving. Although low-cost term ina lsthat provide Internet access are becoming available, software andh a rdware are a lso being developed that allow sites to becomem o re sophisticated. Consumers may have access through low-costt e rm inals or ª cyber cafesº (businesses that sell Internet and Web access by the hour) but may be restricted by the types of pro -grams and hardware needed to take advantage of video or soundcapabilities .

Once the issue of access is resolved, a re la ted c h a l len geinvolves the training of individuals to use these re s o u rces. How


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do non-school-age individuals learn how to use the Internet andthe Web? A variety of options for gaining knowledge and guidancea re available. Public libraries or universities may offer intro d u c-to r y seminars free of charge. An over whelm ing number of tradebooks are available to assist the novice user. Commercial prov idersalso publish guides to the Internet and the Web that include a lim-ited number of free access hours to their ser vice. Cyber cafes andcom puter stores may offer classes or tutoring for a fee. Cliniciansand educators may need to become fam iliar with options availablein their area to assist c lients and students in gaining fam iliaritywith and access to the Internet and the Web. Instruction may needto be incorporated in to death education courses and clinicalse tting s.

While the rapid evolution and increasing availability of thistechnology and the burgeoning of thanatology sites are cause forexcitement, the need for caution must also be noted . Individualsp u rchas ing p roducts or ser vices via the Internet and the We bshould be familiar with consumer protection issues related to elec-t ronic sales methods. This seem s to be particularly relevant fo rthose purchasing funera l-related items at the time of need.

Consumers of electron ic in fo rmation must be aware of theneed to ascertain the reliability of inform ation. Becau se anyonecan post absolu tely anything on the Web, the integrity of infor-mation should be assessed in relation to the source or sponsor ofthe in formation. Information related to medical or mental healthcare should be used in consultation with a trusted pro fes s io n al ’ sgu idance .

Some practitioners or educators may react negatively towardchat groups or discussion forums that are not moderated or facil-itated by professionals . Does access to these re s o u rces for infor-m ation and support create an alternative solu tion for those whohave sought profess ional support in the past, potentially cre a tin ga hesitancy on the part of professionals to refer to such re s ou rces?Does the possibility of rece iv ing inaccurate info rmation or ª badadviceº pose a threat to the safety or mental health of the dyingor the bereaved?

Of equal concern might be the reaction of an individual whoreceives no acknowledgment of or response to his or her postingf rom the other members of a chat group. Com m unication v ia


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com pu ter does no t p rov ide indiv iduals w ith opportun itie s togauge another’s nonverbal reactions. The dynamics of supportivein teractions are dif f e ren t w ithout nonverbal interchanges. Howdoes the absence of the physical presence of others or the possi-bility of receiving a hug affect those participating in on-line sup-p o r t group s? Poten tia l m isu nderstand ings betw een ind iv idua lswho do not meet face to face must also be considered (Slade &B itar, 1987).

Som e of the d ilem mas accom pany ing the technologica ladvances related to the Internet and the Web parallel the debatesand dilemmas generated by technological and medical advancesof the past. A t tim es, technology has evolved before d is cu ss ionsr e g a rding the eth ical implications of such advances have had achance to occur. Top ic s presen ted on the In te rnet and the Web m ay challenge the com fort levels of individuals as well asp ro fes s iona ls .

To illustrate, consider the follow ing examples. According to as to r y in R o l l i n g S t o n e (ª A t Cornel l,º 1994), ª su icide posts are byno means an anomaly in cyberspaceº (p . 63). One such postresulted in the involuntar y commitment of Matt M ihaly, a Corn e l lstudent who now realizes in re trospect that he used poor judg-ment in posting a suicide threat that was not serious. The proces sinitiated by the university’ s crisis management policy was not ableto take M ahaly ’s beliefs abou t postings on the Internet in toaccount (ª If you use the Internet, you know that a lot of the stuffon the Usenet newsgroups is totally not seriousº ; p. 66).

On April 19, 1996, an Associated Press headline proc la im edthat an ª ill Tim othy Lear y m ight tune out while online.º Lear y,cancer str icken and term inally ill , stated that he was exploringthe idea of committing suicide on camera while logged on to theI n te rnet. Lear y ’ s Web site had already become a w idely vis itedsite because of the posting of his daily drug diet to cope with hispain . A lthough Lear y did not follow through w ith this eth ica llyquestionable idea, his death was ® rst announced via his Web page.

Issues of suicide and assisted suicide are openly presen ted andd iscussed. Right-to -d ie organizations have posted a multitude ofi n f o rm ation on-line , inc lud ing an address to contact Dr. JackKevorkian. First amendment rights allow this content to be posted;individual and professional values and eth ics dictate the comfort


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levels of those who are aware of its presence on the Internet andthe Web. Death profess ionals may need to facil itate d iscu ssionsa d d ressing any concerns raised by the availability of suchin fo rm ation .

Implications for Research

A lthough anecdota l evidence of the benefits o f access to theres ou rces described here can be readily found within discussionsposted on the Internet and the Web, there is currently a dear t hof empirical evidence. The previously noted questions re ga rd in gpoten tial c linical benefits and others too numerous to list merita tten tion in fu tu re re s e a rch. While use of the Internet and theWeb to assist with thanatology re se arch presen ts interesting possi-b il ities , th is m ethodo logy is not w ithou t lim ita tions. Be forer e s e a rch ef f o r ts proceed, the implications of re s e a rch req u e s t sand the process of developing mechanism s to protect the rightsof those using the Internet and the Web to cope with ver y personalissues must be carefu lly considere d .

A ve nu e s f o r E x p l o r a t i o n

The fo llow ing examp le s p rovide only a small illu stration of theways in which this technological re sou rce could be used to explorethanatology-related topics. Monitoring the evolu tion of thanatol-ogy re sou rces (types and quantities) would provide an intere s tin grec o rd of one indicator of change in the presence of these topicsin this public forum . Analysis of the content and frequ ency o fpostings could shed new light on circum stances or even ts thatp rompt an individual to reach ou t for support or contribute tos ub seq uen t tem pora r y upsurges of grief . An increa sed under-standing of strateg ies to cope w ith particu lar loss even ts cou ldem e rge as individuals share their successes in relation to the chal-lenges they have faced . Comm on concerns or questions cou ldh igh ligh t is sues appropr iate for inc lusion in com munity deatheducation effo rts or training for bereavement support volunteers.

In addition to the study of traditional bereavement re se a rc htopics, re sea rchers can also explore new situations involv ing lossthat are a direct resu lt of one’s use of this technology. As prev i-


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ou sly noted , rela tionship s v ia compu ter are be ing es tab lishedth rough use of this mechanism for communication and interac-tion. For example, un faithfu lness through involvement in cyber-space relationships is certainly adding a new twist to the topic ofd ivorce-related loss. The unique nature of these rela tionships andthe loss or grief-related situations that result when the re la t io n-ships end is largely unexp lored at the present time. However, thisis likely to change; a recent request for participation in a re sea rc hp roject req u ired a potential respondent to have experienced thedeath of someone he or she met on the Intern e t !

E thi ca l I s s ue s

While it is exciting to note these opportun ities , one m ust notethe serious issues and concerns that are raised by using this tech-nological medium for re search. Many of the ethical considerationsfor trad itional bereavement re s ea rch outlined by Parkes (1995)a re relevant.

Gaining access to bereaved people presents challenges to allre searchers. A lthough chat groups are perceived by most as exist-ing in the pub lic domain , partic ipants in bereav em en t- re l a t edg roups may feel that the private nature of the experience shouldbe respected. ª Lurkingº in a chat grou p Ð pa rtic ipating passivelyby reading postings w ithout responding o r comm unicating w iththe other participants Ð appears to be acceptable according to cur-rent ª nettiquette .º However, dialogue during a recen t discu ssionabout re s e a rch be ing conducted th rough a bereavem ent cha tg roup ind icate s d iff e rent leve ls of com fort. While the value ofresea rch is being recognized, the appropriateness of this domainis being challenged as a result of feelings of uneasiness and thep e rceived degree of intr usiveness. Creation of a separate list org roup of individuals who are interested in receiv ing requests forp artic ipation in re search provides a potential solu tion.

Potential respondents to formal requests for partic ipation insu r vey re sea rch have the right to informed consent prior to takingp a rt in any re sea rch project. Pro c ed u res for incorporating tradi-tional human sub jec t p rotocols and protections in requests forp a r tic ipation in re s e a rch via the Internet and the Web must bedeveloped. Ind iv iduals m ust be in formed of their rights and


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po ten tia l r isk s, includ ing information about the con fidentia lityof their responses , which may not be clear-cut when electro n i cmedia are used for response transmission. Anonymity is not alwayspos sib le, particularly when an individual u ses equipmen t main-tained w ithin the public domain. Independent re sea rchers lackingfo rmal oversight from institu tional rev iew boards may need guid-ance in the development of these protoco ls .

Because of the vulnerability of the bereaved, preven tion ofpo ssib le harm is particu larly important (Parkes, 1995). When acom pu ter ser ves as an ª inter v iewerº am ong geographically dis-persed respondents , obstacles that inter f e re with the re co gn itio no f distress or awareness of the need for additional support arep re sent. Referral to supportive re so u rces on the Web may be anapp ropr iate solution.

L i m i t a t i o ns

Research involv ing sensitive topics such as bereavement or end-of-life issues must always consider the role of selection bias amongrespondents and the potentia l lack of re p re sen tativeness w ith insam p le s ga ined by traditional means (Stroebe & Stro eb e ,1989± 1990). This problematic tendency toward lim ited generaliz-ability would be fur ther compounded by the fact that access tothe Internet and the Web is not universal. Bias related to factorssuch as socioeconomic status and educational levels may be exac-erbated. Methods to document characteristics of users and non-users of this technology should be designed .

Conclusion

This is an exciting time to watch the evolution of these innovativere so u rces and how they are used by those in the general popula-tion and those w ithin the field of thanatology. The potential forpositive benefits is strong; the potential for alarm ing and unset-tl ing consequences a lso exists . C lin ic ians, educators, andr e s e a rchers must begin to acknow ledge and discu ss the ethicald ilem mas as soc iated w ith th is techno logy. Researchers m us tdevelop and use safeguards to protect the rights of individuals par-tic ipating in studies conducted via the Internet and the Web .


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O pp o rtunitie s for dia logue am ong clinic ians, death educato rs,and re s e a rchers u sing this technological re s o u rce in their workmust be crea ted .

In T he L as t T a b o o , Brain (1979), an anthropologis t, d iscu ssedthe issue of awareness of death, pondering when this aware n e s s® rst comes to us. He wro te :

Even if the child is for tunate enough to grow up in a home where thereis no telev ision to make death seem part of ever y en terta inm en t ,whether in cartoon or the never-end ing stream of v ideo -sludge tha tencourages the no tion that ever y problem that af¯ icts society is cure dwith a gun, it cannot escape the fact of death almost as soon as speech isc om p rehended . (p . 27)

If Brain were writing today, he would need to note that thana-tology re so u rces on the Internet and the Web are supplying onem o re mechanism that can influ ence the way that individualsbecome aware of death. As the ª Web of Deathº (R. Wrenn , per-sonal communication, April 10, 1996) continues to grow, thana-tologists should be watching.

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Appendix: Thanatology Sites on the World W ide Web

I n f o rm a t i o n a l a n d E m o t i o n a l S up p o r t

C a n c e r- R e l ate d

CancerNet: http ://www.ncc .go .jp/cnet.h tm lOncoLink : http :// on co lin k .u p enn .edu

C o m p u t e r- M e diat e d D i s cus s i on W i th P ro f e s s i o n a l s

Dr. John Groh o l ’ s Mental Health Page: http ://www.g roh o l . c om

S ites W i t h M ul t i p l e H o t l i nk s

GriefNet: http ://www.rivende ll .orgB e reavem ent Resources: h ttp ://www. fu n e r a l .n e t/ in fo/ b r vre s .

h tm lYahoo ’s Death Page: http://www.yahoo.com/Society_and_ Culture/

Death/WEBSTER: http://www.katsden .com /death/ ind ex .h tm l

N a rra t ive S i t e s

Austin Bastab le: http://www.r ights.org/deathnet/HELP_AUSTIN.h tm l

A Place to Honor Grief: http://www.webhealing.com

C o m m e m o ra t i ve S i t e s

World Wide Cemeter y: http://www.in te r log .com /~cem eter yPet Grief Support Page: http://www.p etlo ss .com

E x p re s s ive S i t e s

Pediatric Art Galler y: http:// onco l in k .u penn .edu/ im age s/ ch ild/gal ler y3.h tm l

Flight 800 & Montoursville, PA: http:// ¯ igh t800 .sun l ink .ne t/

A d va n c e D i re c t ive s / E nd o f L i f e

Choice in Dying: http://www.cho ices.org

E x p e ri e nt ia l S i t e

The Death Clock: http://www.deathc lock .com


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I n s t rum e nt a l / M a t e r i a l A i d

F une ra l i z a t i o n/ M e m o r ia l i z a t i o n

In ternet Cremation Society: http ://www.crem ation .o rgM emoria l Galler y Online Catalog: http :// g r i e f . c om /o rd e r. h tmH oward Funeral Home: http://www.shop s .ne t/ shop s/Car lo s_A_

Howard_Funera l_H om e/

G a l l o w s H um o r

The Graveyard: http://www.pr imenet.com /~tr ix/gyard .h tmThe Bones: http ://www.theb one s.com /

D e a t h E d uc a t i o n O p p o r t u n i t i e s

Grief as a Family Process Course : h ttp ://www. in d ia na .edu/~hper f 558/

In terac tive B ereavem ent Courses : h ttp :// b e re av em en t .o rg /ind ex .h tm l

DeathNet: http ://www.r igh ts .org/d eathn et/open .h tm lCultural Diversity: http://www.execpc.com/~dboals/d iversit.h tm lSocio logy Online L ib rar y: http ://www.f i sk .ed u / v1/So c io log y/

Over view.h tm l

P ro f e s s i o n al R e s o urc e s

ADEC Home Page: http://www.adec .orgSIEC Home Page: http://www.siec.caPODA Home Page: http://www.so ros. org/death .h tm l


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Social Support Internetworks

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Transcript of Social Support Internetworks