QFVpc«24~Bulletin of Social Medicine, No.24 2006

s­

E¨'¸

'·#]¸Ì'HIVZ¥nÕÄY'E¨&\0pc

Daily Difficulty and Desire of the Bereaved: A Study of Bereaved Families of HIV-infected Hemophiliacs
in Japan|²ÕÙÚiÁ^¿v
Yuri MIZOTA, Megumi OZAWA, Yoshihiko YAMAZAKI³dªVªVH FVjpcO ozOV[xV¤{ ozQVÇÒ
Department of Health Sociology, Division of Health Sciences & Nursing, Graduate School of Medicine, The
University of TokyoÀL¹nIfwG£&-/ HIV Z¥nÕÄY'E¨&©0J('3¶0*&¾.'¸'¡X&0·#×Ê3Ï.&0#3Ð±#!Í`Î`®Ã&-0»Ã®3392
N°&®Ã3»Æ225 N° 307 Î.ÖyR´3¶®&-/Ó 60'R´& PTSD a21½h'R´¢oz&0Ñ¬3Ö!0Mº0#R´' 70%Du"+ÈÅC&-/K.'¡X}µ'_3}
%%"+ª½'R´¡!W),#%0+'3+'R´È&-0K.'¶+'!0#Èkr3¯!Ó 70%

0#Z!0#b',ÉqÈ'lt##+&ÔT'§cÏ,¼Ëe]21!0#%$Ï.&%U##+&±%S¦3}Â×!0#'-D'mP.Ø'Jg'

1In order to better design support systems for bereaved family of deceased HIV patients infected through contaminated blood
coagulation factor products, we performed anonymous written survey to characterize the daily difficulties and desires of thispopulation. Self-administered questionnaires were mailed to 392 families. Replies from 307 respondents in 225 families werevalid and analyzed. The study revealed that PTSD was suspected in about 60% of respondents, and nearly half of respondents
showed signs of psychological difficulties. More than 70% of respondents reported self-imposed restrictions due to fear of
discrimination. In spite of this, most respondents reported sources of joy and reasons for living, and nearly all respondents
reported activities meant to honor the memory of the deceased, and from the experience, about 70% of respondents reported
perceived positive change. Finally, respondents harbored strong desires not only for better aid and elimination of prejudice anddiscrimination, but also more thorough disclosures about circumstances surrounding the contamination and prevention ofrecurrence. These results suggest the need for a qualitative improvement of current support efforts in addition to a mere
expansion of them.

6@<ÈHIV/AIDS9;47?>8;4=:5A8¸ÌKeywords: HIV/AIDS; stigma; positive change; Japan

B Introduction

In the first half of the 1980s, about 1400 hemophiliacs,
or about 40% of Japan’s hemophiliac population, became

24

Bulletin of Social Medicine, No.24 2006

infected with HIV through use of unheated bloodhemophiliacs. These include payment of settlement funds,

coagulation factor products imported mainly from the

medical system improvements, medical care coverage for

United States. More than 500 of those infected have diedHIV patients, and awarding of handicapped status to HIV

thus far. More than half of these were under 30, as unheatedpatients. Victims include not only living patients and theirblood products were used mostly by younger patients.

families but bereaved families as well. However, aside from

Although AIDS-related deaths among hemophiliacs peaked

monetary damages, the only concrete settlement received byin 1994-1995 and decreased significantly after 1998 because

bereaved families is small-scale counseling services (Tokyoof the introduction of Highly Active Antiretroviral Therapy,

HIV Litigation Lawyers Group, 2002b).

most HIV-infected hemophiliacs also suffer from hepatitis C,

Deaths of HIV/AIDS patient are usually consideredleading to a recent small upsurge in mortality (Japanese“untimely” and characterized by lack of support (Worden,

Foundation for AIDS Prevention, 2005).

1991), both considered risk factors for impaired adjustment

Self-injection of blood products by hemophiliacs wasfor bereaved families (Archer, 1999; Duran, et al. 1989;

approved by the Ministry of Health and Welfare (MHW,

Stylianos, & Vachon, 1993). Though previous studies

currently the Ministry of Health, Labor and Welfare, orconcerning the bereaved have revealed that AIDS death is

MHLW) in February 1983. Patients themselves welcomed

associated with a higher rate of adverse psychosocial factors

self-injection for the convenience and effectiveness itthat may increase risk of psychological morbidity (Cadell,offered, so imported unheated blood products became

2003; Kelly et al., 1996; Neugebauer et al, 1992; Rosengard,

widely used by the hemophiliac community. However, in& Folkman, 1997; Summers et al., 1995), most studies have

March 1983, the same year that MHW approved unheatedaddressed AIDS bereavement among partners or families ofblood products, the United States approved heated blood

HIV-infected

products instead and recalled unused unheated products for

Bereaved

the danger of HIV infection they represented. Despite thisconsidered to be victims in the sense that it was caused byfact, the MHW did not change its stance on unheatedhuman activities. Mothers often feel guilt and regret for

products until 1985, when heated blood products were

having given birth to hemophiliac children (Markova et al.,approved.

1980; Simon, 1984; Yanaga et al., 1996). From these points,

HIV-infected

hemophiliacs

sued

the

patients

families

throughsexuallyof HIV-infectedtransmission.

hemophiliacs are

the death of hemophiliacs with HIV is considered to be

Japanese

different from patients through sexually transmission.

government and five pharmaceutical companies for damages
in Tokyo and Osaka courts in 1989. This was the first

Hemophilia, which is mainly genetically inherited

anonymous court case in Japanese history, with plaintiff

from the mother, has been associated with stigma (Markova,

numbers used in place of names to protect privacy& Forbes, 1984), HIV infection is associated with a much

(Cullinane, 2005). A settlement was reached in 1996 (Soda,

stronger stigma (Doka, 1997; Alonzo, & Reynolds, 1995).

& Mizushima, 1998), and although financial compensation

The stigma is thought to affect the way in which bereaved

was granted to the plaintiffs, no satisfying explanation of thefamilies experience the death of their loved ones. However,source of the problem was obtained, nor was a meaningful

there has been no national survey performed of bereaved

apology issued to the HIV-infected hemophiliacs and theirfamiliesfamilies (Tokyo HIV Litigation Lawyers Group, 2002a).

questionnaire survey concerning difficulties and request

Finally, the fundamental trilateral relationship between

given by the members of the Tokyo or Osaka HIV Plaintiff

government, pharmaceutical companies, and the medical

Corp before the 1996 settlement. In addition, because fear ofcommunity that fostered the problem in the first place has

discrimination and prejudice has prevented this population

yet to be reformed. Sadly, lessons have not yet to be learned

from discussing the death of their loved ones in public

and implemented from these events (Feldman, 1999).

settings, and because these family members have had

of

HIV

patients

aside

from

an

informalVarious measures have been implemented since thepractically no interaction with each other, the current

1996 settlement to provide relief for the HIV-infected

experiences and needs of the bereaved remain complete







24 Bulletin of Social Medicine, No.24 2006

mystery. It is impossible to gain any meaningful information

About 95% of the patients themselves or bereaved

about bereaved families either through the HIV Plaintiff

families participated in the Tokyo or Osaka HIV Plaintiff

Corps, the HIV Litigation Lawyers Group, or the families

Corps. Of the 524 bereaved families in these groups (as ofthemselves.

March 2002), all 392 families able to be contacted were

Therefore, a better understanding of the current state

asked to respond to the questionnaires, which were mailed

that bereaved family members find themselves in is a

between October and November 2002. Responses from two

prerequisite for designing better support systems and othermembers were requested from families with two or more

concrete relief measures for this population. This study wasmembers. Replies from 225 families (307 members) were

undertaken to elucidate effects of death upon bereaved

valid and analyzed (response rate: 57.4%).

family members, various factors surrounding their current
lives, and what their greatest desires are. It is hoped that theSurvey items and measurements

voices of the bereaved themselves can help shape support
systems going forward.

The following survey questions were based on the
results of preceding interviews and the literature.
1. Attributes: gender, age, relationship with the deceased,
date and age of death of the deceased, and self-rated

 Methods

economic status.
2. Impact of Event Scale-Revised (IES-R): the IES-R(Weiss, & Marmar, 1997) is a self-rating scale with 22

Design of the research

items used for evaluating traumatic stress symptoms.
We adopted a methodological triangulation model

Each item is scored 0-4 and the possible range of the(Creswell, 2003; Morse, 1991) consisting of interviews

score is 0-88. Higher scores suggest greater stressfollowed by written surveys. First we interviewed 42 family

symptoms. The reliability and validity of the Japanese

members from 32 families to make a qualitative assessment

versionof surviving families and their experience, and then used

usefulness of a 24/25 cutoff for screening PTSD

results from these to develop written surveys, which

symptoms have been evaluated (Asukai, et al., 2002).

followed. The written surveys were used chiefly to analyze

Cronbach’s _ in this study was 0.96.
3.

patterns, distributions, and relationships between survey(Asukai,

Twelve-item

1999)

version

of

and

The

the

validity

Generaland

HealthQuestionnaire (GHQ-12): the GHQ (Goldberg, 1972)

items.We report results of the written surveys in this article.
tois also a self-rating scale for the screening minor

Investigate the Lives of Bereaved Families of Iatrogenically

psychiatric disorders. The reliability and validity of

Infected HIV Patients” was organized according to thethe Japanese version (Nakagawa, & Daibo, 1985) andmethod of participatory research (Chesler, 1991; Green, et

the validity and usefulness of a cutoff 3/4 (Goldberg,al., 1995). The committee consisted of bereaved family

et al., 1997) have been evaluated (Honda, et al., 2001).

members and HIV-infected hemophiliac patients belonging

The items were scored according to a Likert scale (0-to Tokyo or Osaka HIV Plaintiff Corps, lawyers of the

1-2-3; possible range of 0-36) to examine correlations

Tokyo or Osaka HIV Litigation Lawyers Group, andamong variables, and bimodally (0-0-1-1; possible

researchers. The objective, methods, and survey items wererange is 0-12) when a cutoff value was used

all determined following the discussion and approval by this(Goldberg, & Williams, 1988). Cronbach’s _ in thiscommittee and by incorporating opinions of the bereaved

study was 0.89.

A

committee

calledthe“TheCommittee

themselves. In ethical consideration of participants, we

4. Self-imposed restrictions due to fear of discrimination(7 items): seven yes or no statements concerning theexercised the utmost caution for privacy protection.

attitude and behavior that the responders took recently
because of their awareness of the public eye including

Respondents and data collection







Bulletin of Social Medicine, No.24 200624

realize their wishes (multiple responses).

“I tried to avoid talking about the disease,” “I thought
up an excuse to hide the disease,” “I tried to change

9. Desires (7 items): things desired of society at large andthe disease mentioned as the cause of death,” “I

government (multiple responses and free writing in

avoided close association at workplace, school, and“Other” category).

neighborhood,” “I avoided contact with my relatives,”
Analysis“I chose a hospital where I was less likely to meet

The incidence and average score of all the items wereneighbors or acquaintances,” and “I felt it difficult to

calculated, with t-tests and _2 tests used for comparisons ofstay at the old residence and moved.”
5. Providers of support (13 items): of the four functional
attributes

ofsocialsupport,i.e.

emotional,

instrumental, informational, and appraisal (Langford

two groups and one-way analysis of variance (ANOVA)
used to compare three and more groups. Statistical software
used was SPSS11.5J.

et al., 1997), support with emotional functions was
selected, and whether or not there were emotional
 Results

support providers was assessed in this study.
Concerning “emotional support providers”, we asked
the respondents to select the persons who listened to

1. Respondent attributes

and supported their worries and troubles pertaining tobereavement from 13 items including “parents,”“spouse,”“HIV-infectedacquaintances

or

Table

1 shows

sociodemographic attributes

of

their

respondents to the written survey. Totaling 307 members offamilies,” and “doctors, nurses, counselors at the

225 families, respondents consisted of 119 mothers, 92

hospital” (multiple responses).

fathers, 48 wives, 35 siblings, 7 children, and 4 others (26. Perceived positive change (4 items): on the basis of

siblings-in-law, 1 uncle, and 1 NA). The average age ofthe results of the interview survey and the literature,

respondents was 58.2±12.0, with nearly half being over 60.

“I grew as a person,” “family ties became stronger,”

Average age of the deceased was 31.7±13.1, and the average“I became able to be supported by my family andtime since death was 8.9±3.3 years. Although little

friends,” and “I gained friends and acquaintances

information was available for those who failed to respondwhom I can trust now” were suggested as positive

this survey, there was no regional difference between thechanges or gains experienced as the bereaved

respondents and non-respondents. There were no significant(multiple responses).

differences in age of the deceased at death, or years since

7. Sources of joy and reasons for living (9 items): ninedeath between study participants and the membership of theitems including “family,” “work,” “hobbies, leisureTokyo or Osaka HIV Plaintiff Corps.

activities, or sports,” and “religion” were suggested as
persons and activities that support in living and gave

2. Mental healthyou joy and opportunities that enlivened respondents(multiple responses).

Average IES-R score, used to screen for PTSD, was

8. Honoring of memories (6 items): six items including

32.9±22.1 (N=283), with 59.4% of respondents scoring“visiting the grave or praying at the family alter,”above the cutoff. When GHQ was calculated bimodaly, the“supporting my family,” “activities to support HIV-average was 4.1±3.8 (N=292), with 45.9% exceeding therelatedlawsuits,

families,”

werepatients,

and

their

bereavedsuggestedasactivities

that

respondents keep up to remember the deceased or to









24 Bulletin of Social Medicine, No.24 2006





24

Bulletin of Social Medicine, No.24 2006

cutoff. When analyzed according to gender andrelationship to the deceased, the only statistically significant
result was a higher IES-R score for mothers than for siblings(F=4.81, p<0.01). A relatively weak negative correlation
was observed between years since death and GHQ score(Pearson’s correlation coefficient=-0.12, p<0.05), but nosignificant correlation was observed between years sincedeath and IES-R. A strong positive correlation was foundbetween

IES-R

and

GHQ

(Pearson’s

correlation

coefficient=0.52, p<0.001), with 30.9% of all respondents(N=307) exceeding the cutoff for both scores. Neither the
IES-R score nor the GHQ score differed according to thegender or relationship to the deceased, except that the IES-R
score was significantly higher in the mothers than in thesiblings (p<0.01).

3. Self-imposed restriction of daily living due to anxiety
over discrimination

Table 2 shows patterns of restrictions imposed byrespondents upon themselves due to fear of discrimination.

5. Perceived positive change

The table shows the percentage of respondents claiming
various forms of behavior, with multiple answers possible.

Table 4 shows what respondents reported as “silver

About half of respondents reported hiding the nature of thelinings,” or positive changes or gains emerging through theirdisease even recently, while 5.4-9.4% reported relationshipexperience of loss. More than one-third of the respondents

avoidance. As many as 69.0% of respondents reported atreported “I grew as a person” and “family ties became

least one form of self-imposed restrictions due to fear ofstronger,” while 67.7% answered yes to at least one of thediscrimination.

four items.

4. Providers of support

Table 3 shows providers of social support for
respondents in the form of consolation and advice, withmultiple responses possible. The most common provider ofsuch was other family members, followed by other HIV
patients, their families, HIV groups, and lawyers. Only 9.5%
reported social support from doctors, nurses, or counselors.
Of these, 43.7% reported that they could only be
supportedtalk byto family about the matter, while as manyas10.2% reported no one to provide this form of social
support.







24 Bulletin of Social Medicine, No.24 2006

(64.4%) followed by “Hobbies, leisure activities, or sports”(41.8%) and “Friends” (32.7%), while 4.7% reported“None.”

7. Comparisons of IES-R and GHQ scores (Table 6)

IES-R and GHQ scores were higher for respondents
reporting self-imposed restrictions of daily living due toanxiety over discrimination compared to those who reported
no restriction. Although not shown in the table, anexamination of the partial correlation between such selfimposed restriction and mental health yields a significant
positive correlation (when controlling for age, sex, years
since death, and financial status) with IES-R scores (partial
correlation coefficient=0.283, p<0.001) and GHQ scores(partial correlation coefficient=0.234, p<0.001). Neither
IES-R score nor GHQ score differed according to the
6. Sources of joy and reasons for living

support.
GHQ score was higher for respondents reporting no

Table 5 shows people and activities described bypositive change compared to those who reported some

respondents as sources of joy and reasons for living, with

benefits, although the difference of IES-R score was not

multiple answers possible. Most common was “Family,”statistically significant.

Table 6Comparisons of IES-R and GHQ scores
Na

IES-R
Mean

SD

Na

GHQ-12Mean

SD

At least 1 of the 7 items

198

35.12

21.16

None

67

24.06

20.27

197

16.43

5.95

71

13.52

5.13

At least 1 of the 7 items

250

32.51

21.65

257

15.68

5.72

None

28

33.81

23.61

29

15.72

7.60

At least 1 of the 7 items
None

189

31.73

21.20

189

15.05

5.48

87

33.88

23.10

95

16.85

6.71

263

31.77

21.75

276

15.35

5.72

13

49.68

21.16

14

22.13

6.61

Self-imposed restrictions of daily living
due to anxiety over discrimination
***

***

Support

Perceived positive change*

Sources of joy and reasons for living
At least 1 of the 9 items
Note.

a

None
Exclude missing values***:p<0.001, **:p<0.01, *:p<0.05



*

**





23

Bulletin of Social Medicine, No.23 2005

The mean IES-R score and mean GHQ score forrespondents

reportingnoreasonsforliving9. Desires of the bereaved

weresignificantly higher than the mean score of those reporting

Table 8 shows desires harbored by the bereaved. Mostat least one.

common was “Prevention of further medical disaster,”(87.0%) followed by “Elimination of prejudice and8. Honoring of memories

discrimination against HIV and hemophilia” (64.0%) and“Support for the victims of drug-induced HIV infection”

Table 7 shows ways of giving offerings or otherwise(59.6%). Responses of “Admitting responsibility for thehonoring the memory of the deceased. More than 90% of

occurrence of drug-induced HIV,” “Clarification the truth of

respondents reported visiting graves or praying at a family

drug-induced HIV infection,” and “Propagating correct

altar. When six survey items were divided into the three

understanding about drug-induced HIV to the public” werecategories“Livingalso selected by 46.9-58.6% of respondents. Free responses

positively,” “HIV-related activities,” 29.4% of respondents

in the “Other” section included such sentiments as “I would

claimed only one category and about 70% reported two or

like a museum built to ensure the history of drug-induced

more categories. The majority of these included “Offerings

HIV infection is passed on,” “I want to be left alone

to the deceased” in addition to some form of activity. Only

already,” and “I want this given continuous attention, notthree respondents (1.0%) reported no such honoring oftreated as a temporary issue.”of“Offerings

to

the

deceased,”memory in any form.

 Discussion

1. Aging of the bereaved and psychological problems

Average age of written survey respondents was 58.2
years. A relatively long period of time had already passed
since death; an average of 8.9 years, and 5 or more years inmore than 90% of cases. Reasons for the advanced age ofthe respondents include the fact that about 70% of themwere parents of the deceased, and that about 20 years has

24 Bulletin of Social Medicine, No.24 2006

already elapsed since the original drug-induced HIV

discrimination. This reveals that bereaved families still feel

infection.

stigmatized, and that the courtesy stigma applied to families

Events of the case also severely impacted the mentalof HIV patients does not pass away with the patients

health of the respondents, with PTSD suspected in 59.4%

themselves, but persists long after their death. Higher levels

and impaired psychological health likely in 45.9%. Many ofof such self-imposed restriction were associated with higher

the

IES-R

respondents

arethought

torequirespecialized

and

GHQ

scores,suggesting

that

fear

of

discrimination is strongly correlated with PTSD-like

psychological care.
Preceding research on the mental health of bereaved

symptoms and deteriorating psychological health. This fear

family reports a tendency for prolongation of grief,of discrimination, combined with specific contextual facets

difficulty adjusting (Raphael, et al., 1993; Spooren, et al.,described above, makes the fact of death even more

2000-2001), mental distress (Murphy, et al., 2002; Parkes,

traumatic and leads to difficulties for bereaved family

1993; Spooren, et al., 2000-2001), and symptoms associatedmembers later in life.

with PTSD (Kaltman, & Bonanno, 2003; Simpson, 1997;

The support networks available to this population are

Zisook, et al., 1998) when the death of the loved one is aextremely limited; 43.7% of respondents reported being able

traumatically violent one involving accident, suicide, orto go to only other family members for consolation andmurder. Death of hemophiliacs with HIV is, strictly

advice, while 10.2% reported total absence of such support.

speaking, a natural one due to disease, but it also shares

Behind this lies fear of discrimination, for unwillingness toattributes of violent death due to the fundamental fact ofadmit that they are the relatives of a hemophiliac who diedhuman agency in it. Further, AIDS death itself is consideredof HIV severely limits opportunities for appropriate support.

risk factor for impaired adjustment for bereaved families

The fact that only 9.5% of respondents claimed support(Archer, 1999; Duran, et al. 1989; Stylianos, & Vachon,from doctors, nurses, or counselors despite the widespread1993). This contextual nature of bereaved families’

signs of psychological problems in this group speaks to theexperience may be responsible for the psychologicallack of necessary support networks in the medical

problems widely observed in this population.

community. The first remedy for this must be medical
support incorporating the specific contextual nature of thispopulation’s

2. Widespread fear of discrimination and lack of support

needs,

while

socialprejudiceanddiscrimination must also be eliminated in order for bereaved
Goffman (1963) reports that stigmas are attached notfamilies to live free from fear and self-imposed restrictions.

only to those bearing the original stigmatized characteristic,

The aging of bereaved families makes the issue of isolationbuteven more important, and the improvement of support

also

to

those

in

close

relationship

to

them.

systems going forward even more pressing.

This ”courtesy stigma” (Goffman, 1963) is directed towards
family members and close acquaintances. Numerous reports

Problems related to anxiety over discrimination anddescribe stigmatization of family members of stigmatizedlack of support are also thought to be shared by surviving

individuals (Angermeyer, et al., 2003; Gray, 1993; Green,

HIV-infected hemophiliacs and their families.

2003; Norvilitis, et al., 2002). This phenomenon is also
observed in family members of HIV patients and exerts a

3. Perceived positive change, sources of joy and reasons forstrong influence on their daily lives (Demi, et al., 1997;

living, and honoring the memory of the deceased

Poindexter, & Linsk, 1999; Powell-Cope, & Brown, 1992;
About 70% of bereaved family members reported

Wight, et al., 2006).
In this study, despite the fact that an average of about

feeling that they did gain something from their experiencenine years had passed since the death of their loved one,of loss. Most respondents were attempting to recast theabout 70% of bereaved family members still suffered self-

meaning of the death of their loved one and find meaning in

imposed restrictions on daily activities due to fears of

their own lives as they found reasons for living and honored

23

Bulletin of Social Medicine, No.23 2005

the memory of the deceased through offerings and otherVincent, et al., 1994). It was also the reason given by theactivities. However, despite efforts to “find a silver lining”

respondents of several bereavement studies for theirand create meaning in other ways, about half of respondents

willingness to participate (Cook, & Bosley, 1995; Cooper,

displayed signs of psychological problems, and still

1999; Dyregrov, 2004).

harbored internal feelings of tension and crisis surrounding

Traditionally, the focus of support for the victims has

the death of their loved one. Although these issues werebeen on financial damages and psychological counseling; inobservable even in those respondents striving to find various

short, a direct, unilateral model that placed victims squarely

sources of meaning, nearly 5% of bereaved family membersin the role of recipients. Although the importance of aid

described neither sources of joy nor reasons for living at all,directed at individuals is not disputed, working together

highlighting this population’s need for support.

with society to reform the fundamental causes of the drug-

It has been reported that experiences of traumatic loss

induced HIV infections is also a crucial way of supporting

can have both negative effects, such as PTSD andthe bereaved. This study has shown that activities in which

depression, and positive effects, where meaning is gained

bereaved family members team up with other parts ofthrough the experience (Cadell, 2003; Davis, et al., 1998;

society to reform structures responsible for the infections,

Davis, & Nolen-Hoeksema, 2001; Frantz, et al., 1998;

carry investigations further, and prevent recurrence, will be

Lehman, et al., 1993). It has also been reported that theseconnected to healing.

negative and positive effects can coexist in individualsThis study has also shown the insufficiency of a(Cadell, 2003; Park, et al., 1996). Several studies havesincere apology to bereaved families for the deaths of theirreported associations between positive change and improved

loved ones and the full explanation about HIV infection ofmental health (Davis, et al, 1998; Davis, et al, 2001;

hemophiliacs. The satisfaction with the treatment by the

McMillen, et al, 1997), anda similar tendency wascriminal justice system and factual information are

observed in this study. Focusing on positive effects is likely

considered to be the important determinants of bereaved

to prove useful in treatment and overcoming trauma

families’ mental health (Amick-McMullan, et al., 1989;(Calhoun, & Tedeschi, 1999), further work is needed to

Winje, 1998; Worden, 1992). We have shown that a sincere

expand the theory.

apology from the government, pharmaceutical companies,
and doctors, together with full and honest explanation about
the case, and further measures to prevent a recurrence, are

4. Bereaved families’ desires

an indispensable aspect of true aid to the bereaved.
The most commonly expressed desire of the bereaved
5. Future directions

toward the world, society, and government was a preventionof reoccurrence of medical disaster in the future, followedby aid for victims, damages, increased understanding, andOf the 42% of survey recipients who did not respond,

elimination of prejudice and discrimination. More than half

it is assumed that many of them failed to do so because ofof respondents also desired further disclosures about thethe pain associated with recalling and discussing theirdrug-induced HIV infection.

experience. Because this segment of the population may

Desires for preventing reoccurrence was expressedsuffer from even greater difficulties, different ways of

not only in terms of bereaved family members themselves,approaching them must be considered going forward.

but also for the purpose of not letting their loved one’s death

However, this study was the first comprehensive, national

go to waste, creating a lesson from it, and having society

survey of bereaved family members of hemophiliacs with

benefit from that lesson. This strong desire for a “isi no

drug-induced HIV, and we consider it significant that their

shakai ka” (Noda, 1997) or “socialization of will” is also

long silence has been breached. Results suggest that theshared with bereaved families of accidents, medical

contextual nature of their experience, mental health, andmalpractice, and other victims (Imai, 1997; Noda, 1992;

other lifestyle factors must be taken into account for a

24 Bulletin of Social Medicine, No.24 2006

qualitative reform of support to this group. These results
also highlight the importance of removing the social stigma

Alonzo, A.A., & Reynolds, N.R. (1995). Stigma, HIV andsurrounding HIV and hemophilia, and the prejudice andAIDS: an exploration and elaboration of a stigma

discrimination underlying this stigma.

trajectory. Social Science & Medicine, 41(3), 303-315.
forAmick-McMullan, A., Kilpatrick, D.G., Veronen, L.J., &transcending the bounds of traditional aid and giving theSmith, S. (1989). Family survivors of homicide victims:

victims agency in their own support. In other words,

theoretical perspectives and an exploratory study.

formation of partnerships between bereaved families andJournal of Traumatic Stress, 2(1), 21-35.

This

study

also

suggeststhenecessity

furtherfactualAngermeyer, M.C., Schulze, B., & Dietrich, S. (2003).

work

towards

Courtesy stigma: a focus group study of relatives of

prevention of recurrence, is an indispensable aspect of trueschizophrenia patients. Social Psychiatry & Psychiatricaid to the bereaved. Our study also suggests that the medical

Epidemiology, 38(10), 593-602.

societytoobtainsincereapologies,

explanations

andinvestigations,andcommunity must fundamentally re-think its relationship toArcher, J. (1999). The nature of grief: the evolution andbereaved families from the perspective of responsible social

psychology of reactions to loss. New York; Routledge.

citizens rather than merely as providers of care. These

Asukai, N. (1999). Huansh_gai: gaish_go sutoresu sh_gai

insights should be of use in forming support systems for(PTSD) [Anxiety disorder: post traumatic stress disorder

other types of victims as well.

(PTSD)]. Clinical Neurology, Extra number volume,171-177. (in Japanese)

It is our hope that the insights gained from this study
surviving

Asukai, N., Kato, H., Kawamura, N., Kim, Y., Yamamoto,hemophiliacs with HIV, their families, and other victims, so

K., Kishimoto, J., Miyake, Y., & Nishizono-maher, A.

that support systems for these groups may be improved and(2002). Reliability and validity of the Japanese-language

their QOL enhanced.

version of the impact of event scale-revised (IES-R-J):

may

contribute

to

the

understandingoffour studies of different traumatic events. The Journal of
Nervous & Mental Disease, 190(3), 175-182.
Acknowledgements

Cadell, S. (2003). Trauma and growth in Canadian carers.
AIDS Care, 15(5), 639-648.

We would like to express appreciation for Katsumi

Calhoun, L.G., & Tedeschi, R.G. (1999). Facilitating

Ohira, Jugo Hanai, and the other members of the Committee

posttraumatic growth: a clinician’s guide. Mahwah, NJ;

toErllbaum.

Investigate

the

Lives

of

Bereaved

FamiliesofIatrogenically Infected HIV Patients who cooperated with

Chesler, M.A. (1991). Participatory action research withthis study. As committee members who also have been

self-help groups: an alternative paradigm for inquiry andpersonally affected by the tragedy of drug-induced HIV

action. American Journal of Community Psychology,

infection, Yoko Eguchi and Shinichiro Seto provided

19(5), 757-768.

particularly valuable advises. We would also like to thankCook, A.S., & Bosley, G. (1995). The experience ofthe research working group member and fellow graduate

participating in bereavement research: stressful or

students. Most of all, however, we are grateful towards

therapeutic? Death Studies, 19(2), 157-170.

bereaved families themselves for their willingness to

Cooper, J. (1999). Ethical issues and their practicalconfront painful memories that participation in the study

application in a psychological autopsy study of suicide.

required.

Journal of Clinical Nursing, 8(4), 467-475.
Creswell, J.W.

(2003). Research

design: qualitative,

quantitative, and mixed methods approaches. Thousand
References

Oaks; Sage.
Cullinane, J. (2005). Tainted blood and vengeful spirits: the

23

Bulletin of Social Medicine, No.23 2005

Gray, D.E. (1993). Perceptions of stigma: the parents oflegacy of Japan’s yakugai eizu (AIDS) trial. Culture,

autistic children. Sociology of Health & Illness, 15(1),Medicine & Psychiatry, 29(1), 5-31.

102-120.

Davis, C.G., Nolen-Hoeksema, S., & Larson, J. (1998).
Making sense of loss and benefiting from the experience:

Green, L.W., George, M.A., Daniel, M., Frankish, C.J.,

two construals of meaning. Journal of Personality &Herbert, C.J., Bowie, W.R., & O’Neill, M. (1995). Study

Social Psychology, 75(2), 561-574.

of participatory research in health promotion: review
andDavis, C.G., & Nolen-Hoeksema, S. (2001). Loss andrecommendations

for

the

developmentof

meaning: how do people make sense of loss? American

participatory research in health promotion in Canada,

Behavioral Scientist, 44(5), 726-741.

Institute of Health Promotion Research, University ofDemi, A., Bakeman, R., Moneyham, L., Sowell, R., & Seals,

British Columbia & B.C. Consortium for HealthB. (1997). Effects of resources and stressors on burden

Promotion Research, Royal Society of Canada, Ottawa.

and depression of family members who provide care to

Green, S.E. (2003). “What do you mean ‘what’s wrong withan HIV-infected woman. Journal of Family Psychology,

her?’”: stigma and the lives of families of children with

11(1), 35-48.

disabilities. Social Science & Medicine, 57(8), 13611374.

Doka, K.J. (1997). AIDS, fear, and society. Washington, DC:

Honda, S., Shibata, Y., & Nakane, M. (2001). GHQ 12

Taylor & Francis.
Duran, A., Turner, C.W., & Lund, D.A. (1989). Social

k_moku situmonsi wo motiita seisinigakuteki sh_gai no

support, perceived stress, and depression following thesukur_ningu [Screening psychiatric disorders by using

death of a spouse in later life. In D.A. Lund (Ed.), Older

GHQ-12]. Journal of Health and Welfare Statistics,

bereaved spouses; research with practical applications

48(10), 5-10. (in Japanese)Imai, Y. (1997). A damage on the heart of the ‘criminal(pp.69-78). New York; Hemisphere Publishing.
Dyregrov, K. (2004). Bereaved parents’ experience ofvictim’: an opinion from parents whose child is lost by

research participation. Social Science & Medicine, 58(2),traffic accident. Journal of Psychiatric and Consultation

391-400.

Liaison Nursing, 1(4), 365-370. (in Japanese)

Feldman,E.A.

(1999).

HIV

and

blood

in

Japan;

Japanese Foundation for AIDS Prevention. (2005). Nationaltransforming private conflict into public scandal. In E.A.

surveillance of coagulation disorders in Japan, 2003

Feldman, & R. Bayer, (Eds.), Blood feuds: AIDS, blood

fiscal year report. (in Japanese)and the politics of medical disaster (pp.60-93), New

Kaltman, S., & Bonanno, G.A. (2003). Trauma andYork; Oxford University Press.

bereavement: examining the impact of sudden andFrantz, T.T., Trolley, B.C., & Farrell, M.M. (1998). Positive

violent deaths. Journal of Anxiety Disorders, 17(2), 131-

aspects of grief. Pastoral Psychology, 47(1), 3-17.

147.

Goffman, E. (1963). Stigma: notes on the management of

Kelly, B., Raphael, B., Statham, D., Ross, M., Eastwood, H.,

spoiled identity. New Jersey; Prentice Hall.

McLean, S., O’Loughlin, B., & Brittain, K. (1996). A

Goldberg, D.P. (1972). The detection of psychiatric illness

comparison of the psychosocial aspects of AIDS andby questionnaire. Maundsley Monographs. Oxford;

cancer-related bereavement. International Journal of

Oxford University Press.

Psychiatry in Medicine, 26(1), 35-49.

Goldberg, D.P., Gater, R., Sartorius, N., Ustun, T.B.,

Langford, C.P., Bowsher, J., Maloney, J.P., & Lillis, P.P.

Piccinelli, M., Gureje, O., & Rutter, C. (1997). The(1997). Social Support: a conceptual analysis. Journal ofvalidity of two versions of the GHQ in the WHO study ofAdvanced Nursing, 25(1), 95-100.

mental illness in general health care. Psychological

Lehman, D.R., Davis, C.G., DeLongis, A., Wortman, C.B.,

Medicine, 27(1), 191-197.

Bluck, S., Mandel, D.R., & Ellard, J.H. (1993). Positive

Goldberg, D.P., & Williams, P. (1988). A user’s guide to theand negative life changes following bereavement andGeneral Health Questionnaire. Windsor; NFER-Nelson.

their relations to adjustment. Journal of Social and

Parkes, C.M. (1993). Psychiatric problems following

Clinical psychology, 12(1), 90-112.

bereavement by murder or manslaughter. British Journal

Markova, I., & Forbes, C.D. (1984). Coping withhaemophilia. An

24 Bulletin of Social Medicine, No.24 2006

International Review

of Psychiatry, 162, 49-54.

of Applied

Poindexter, C.C., & Linsk, N. (1999). HIV-related stigma in

Psychology, 33(4), 457-477.

a sample of HIV-affected older female African American

Markova, I., MacDonald, K., & Forbes, C. (1980). Impact ofcaregivers. Social Work, 44(1), 446-461.

haemophilia on child-rearing practices and parental

Powell-Cope, G.M., & Brown, M.A. (1992). Going public

cooperation. Journal of Child Psychology & Psychiatry,as an AIDS family caregiver. Social Science & Medicine,21(2), 153-155.

34(5), 571-580.

McMillen, J.C., Smith, E.M., & Fisher, R. (1997). Perceived
benefit and mental health after three types of disaster.

Raphael, B., Middleton, W., Martinek, N., & Misso, V.

Journal of Consulting and Clinical Psychology, 65(5),(1993). Counseling and therapy of the bereaved, In M.

733-739.

Stroebe, W. Stroebe, & R.O. Hansson (Eds.), Handbook

Morse, J.M. (1991). Approaches to qualitative-quantitativeof bereavement: theory, research, and intervention

methodological triangulation. Nursing Research, 40(1),(pp.427-453). Cambridge; Cambridge University Press.
Rosengard, C., & Folkman, S. (1997). Suicidal ideation,

120-123.
Murphy, S.A., Johnson, L.C., & Lohan, J. (2002). The

bereavement, HIV serostatus and psychosocial variables

aftermath of the violent death of a child: an integration of

in partners of men with AIDS. AIDS Care, 9(4), 373-384.

the assessments of parents’ mental distress and PTSD

Simon, S. (1984). Hemophilia and the family system.
Psychosomatics, 25(11), 845-849.

during the first 5 years of bereavement. Journal of Loss

Simpson, M.A. (1997). Traumatic bereavement and death-and Trauma, 7(3), 203-222.
Nakagawa, Y., & Daibo, I. (1985). Seisin kenkou ch_sahy_

related PTSD. In C.R. Figley, B.E. Bride, & N. Mazza

tebiki: nihonban GHQ [Manual of the Japanese version(Eds.), Death and trauma: the traumatology of grievingof the general health questionnaire]. Tokyo; Nihon Bunka(pp.3-16). Washington, DC; Taylor & Francis.
Soda, K., & Mizushima, S. (1998). Health care systems in

Kagakusha. (in Japanese)
Neugebauer, R., Rabkin, J., Williams, JBW., Remien, RH.,

transition 2. Japan, Part 2. The current status of AIDS-

Goetz, R., & Gorman, J.M. (1992). Bereavement

HIV in Japan. Journal of Public Health Medicine, 20(1),reactions among homosexual men experiencing multiple

34-40.

losses in the AIDS epidemic. American Journal of

Spooren, D.J., Henderick, H., & Jannes, C. (2000-2001).

Psychiatry, 149(10), 1374-1379.

Survey description of stress of parents bereaved from a

Norvilitis, J.M., Scime, M., & Lee, J.S. (2002). Courtesy
stigmainmothers

with

Attention-apreliminary

Stylianos, S.K., & Vachon, M.L.S. (1993). The role of social

investigation. Journal of Attention Disorders, 6(2), 61-

support in bereavement. In M. Stroebe, W. Stroebe, &68.

R.O. Hansson (Eds.), Handbook of bereavement: theory,

Deficit/Hyperactivityofchildrenchild killed in a traffic accident. a retrospective study of a

Disorder:victim support group. Omega, 42(2), 171-185.

Noda, M. (1997). Isi no shakaika toiu purosesu [The process

research, and intervention (pp.397-410), Cambridge;of socialization of will]. In A. Deeken, & K. Yanagida,

Cambridge University Press.

(Eds.), Totuzen no si to gur_hu kea [Sudden death andSummers, J., Zisook, S., Atkinson, JH., Sciolla, A.,grief care] (pp.22-46), Tokyo; Shunj_sya. (in Japanese)

Whitehall, W., Brown, S., Patterson, T., & Grant, I.

Noda, M. (1992). Mo no toj_ nite [In the middle of(1995). Psychiatric morbidity associated with acquiredmourning]. Tokyo; Iwanami shoten. (in Japanese)

immune deficiency syndrome-related grief resolution.

Park, C.L., Cohen, L.H., & Murch, R.L. (1996). Assessment

Journal of Nervous & Mental Disease, 183(6), 384-389.

and prediction of stress related growth. Journal ofTokyo HIV Litigation Lawyers Group. (2002a). Yakugai

Personality, 64(1), 71-105.

AIDS saibansi. Dai1kan (Sosh_ hen) [History of trial of

23

Bulletin of Social Medicine, No.23 2005

drug-induced HIV infection. vol.1 (Lawsuit)]. Tokyo;

Wi g h t , R . G . , A n esh en sel , C . S . , M u rp h y, D . A . ,Nihon Hy_ronsha. (in Japanese)

M iller-M artin ez, D ., & B eals, K . P. (2 0 0 6 ).

Tokyo HIV Litigation Lawyers Group. (2002b). Yakugai

P erceiv ed H IV stig m a in A ID S careg iv in g

AIDS saibansi. dai4kan (K_kyutaisaku hen) [History ofd y ad s. S o ci a l S ci en ce & M ed i ci n e, 6 2 (2 ),trial

4 4 4 -4 5 6 .

ofdrug-induced(Compensation)].

Tokyo;

HIV

infection.

Nihon

Hy_ronsha.

vol.4
(in

Winje, D. (1998). Cognitive coping: the psychologicalJapanese)significance of knowing what happened in the traumatic

Vincent, C., Young, M., & Phillips, A. (1994). Why doevent. Journal of Traumatic Stress, 11(4), 627-643.

people sue doctors? A study of patients and relatives

Worden, J.W. (1991). Grieving a loss from AIDS. Hospicetaking legal action. Lancet, 343(8913), 1609-1613.

Journal: Physical, Psychosocial, & Pastoral Care of the

Weiss, D.S., & Marmar, C.R. (1997). The impact of event

Dying, 7(1-2), 143-150.

scale-revised, In J.P. Wilson, & T.M. Keane (Eds.),

Worden, J.W. (1992). Grief counseling and grief therapy: aAssessing psychological trauma and PTSD (pp.399-411).

handbook for the mental health practitioner (2nd ed.),New York; The Guilford Press.

London; Routledge.
Yanaga, Y., Ono, O., & Shirahata, A. (1996). Counseling for
HIV-positive haemophiliacs in Japan. Haemophilia, 2(2),109-113.
Zisook, S., Chentsova-Dutton, Y., & Shuchter, S.R. (1998).
PTSD following bereavement. Annals of ClinicalPsychiatry, 10(4), 157-163.

