Carrying out a social autopsy of deaths of persons who are homeless

Manal Guirguis-Younger a,*, Vivien Runnels b, Tim Aubry b, Jeff Turnbull c

a Faculty of Human Sciences, Saint Paul University, 223 Main Street, Ottawa, Ont., Canada K1S 1C4b University of Ottawa, Ottawa, Ont., Canada

c Department of Medicine, Faculty of Medicine, The Ottawa Hospital, University of Ottawa, Ottawa, Ont., Canada

Abstract

Social autopsy methodology has been useful in uncovering patterns leading to untimely deaths in many different contexts. Although patterns of

early deaths have often been detected among individuals who are homeless, social autopsies are particularly difficult to carry out in this

population. This paper provides a template for carrying out a social autopsy of persons who died while homeless. The logistical, ethical, and

methodological challenges associated with implementing this methodology are discussed with suggested responses. In addition, this article aims

to provide procedures and lessons learned for researchers embarking on this type of work. The described procedures are based on an investigation

intended to develop a social autopsy methodology to investigate early mortality among homeless persons.

q 2005 Elsevier Ltd. All rights reserved.

Keywords: Homelessness; Mortality; Social Autopsy

A social autopsy is an in-depth investigation of a multitude

of psychosocial circumstances surrounding deaths occurring in

a particular group of people. Typically, social autopsies are

organized around a particular theory of prevention and/or

evaluation. Such investigations may be designed to evaluate

the positive or negative impact of new programs and policies

on mortality patterns. In addition, a social investigation of

mortality can focus on how mortality rates are affected by a

time-limited event, such as a heat wave (Klinenberg, 1999;

2002), an epidemic (Ward & Fox, 1977), and/or a given set of

social and demographic characteristics in a population such as

age or sex (Aguilar et al., 1998; Crane, 1994). Internationally,

some forms of the social autopsy method have been used in

developing countries with incomplete civil registration and

sparse formal medical care (Chandramohan, Maude, Rodri-

gues, & Hayes, 1994). In essence, the social autopsy

methodology is used to examine the contribution of social,

personal, health, and environmental variables to unusual

mortality rates. From a program evaluation standpoint, social

autopsies can be considered a type of needs assessment

intended to identify factors that can be addressed through

health and social programs and policies.

0149-7189/$ - see front matter q 2005 Elsevier Ltd. All rights reserved.

doi:10.1016/j.evalprogplan.2005.11.001

* Corresponding author. Tel.: C1 613 236 1393x2390.

E-mail address: myounger@ustpaul.ca (M. Guirguis-Younger).

Deaths among homeless individuals have long been a source

of concern among researchers and the wider community.

Studies on deaths of individuals who are homeless have found

the rate of mortality is 2–10 times higher than the general

population (Barrow, Herman, Cordova, & Struening, 1999;

Hanzlick & Parrish, 1993; Hibbs et al., 1994; Hwang, 2000;

Hwang, Orav, O’Connell, Lebow, & Brennan, 1997; Kasprow

& Rosenheck, 2000; Kushner, 1998; Shaw, Dorling, & Davey

Smith, 1999). There is a general recognition that homelessness

has a significant role to play in this pattern of untimely deaths.

Many researchers have come to realize that homelessness is

more than simply the absence of housing, but rather it is a life

situation that has an impact on all aspects of an individual’s

life, especially health (Diblasio & Belcher, 1993; Dunn, 2000;

Gelberg, Gallagher, Andersen, & Koegel, 1997; Hwang, 2001;

Wright, 1990).

While there is a body of literature that investigates mortality

among homeless persons, such research has, for the most part,

maintained a focus on health problems and lack of access to

health services, and the extent of service utilization (e.g.

Hwang, 2000; Hwang et al., 1997; Kleinman et al., 1996) as

contributors to death. Notwithstanding the importance of this

work, many of the fundamental questions concerning the role

of social aspects of homelessness in high mortality are left

unanswered (Grenier, 1996).

Part of the explanation for the scarcity of this type of

research within this population is that designing and executing

a social investigation on mortality among urban homeless

people is extremely challenging, with many ethical and

Evaluation and Program Planning 29 (2006) 44–54

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M. Guirguis-Younger et al. / Evaluation and Program Planning 29 (2006) 44–54 45

logistical difficulties. Some of the barriers are related to

obtaining consent and respecting privacy (Bayoumi & Hwang,

2002), the ‘secretive and elusive nature’ of street life (Crane,

1993, 1994), difficulties encountered in accessing health and

social services records (Hanzlick & Parrish, 1993), the

transience and mobility of homeless individuals, the lack of

systematic data regarding housing and health at the time of

death (Grenier, 1996), and unknown personal and familial

history. Though some features of this methodology exist in

social autopsy studies conducted in developing countries,

especially around infant deaths (e.g. Aguilar et al., 1998), it has

been rarely used in difficult-to-investigate populations, such as

persons who are homeless (Bayoumi & Hwang, 2002; Crane,

1994).

To truly understand how homelessness contributes to

untimely deaths, investigators must consider a broad set of

individual, environmental, economic, and social factors.

While, at one level, homelessness is a universal phenomenon,

the experience of persons who are homeless is tied to

geographical and regional realities (Hwang, 2000). For

example, the nature and accessibility of services and resources

available to homeless persons, social policies related to

housing, and even weather patterns, are all factors that may

contribute to rates of mortality among the homeless in a given

location.

The intention of this article is to describe a methodology for

investigating the deaths of persons who are homeless, and

constructing a guide for researchers embarking on similar

work. Essentially, our purpose is to make available the lessons

learned during the process of completing a social autopsy study

with persons who are homeless. This methodology was

developed based on an investigation undertaken in Ottawa,

Ontario, Canada. The study was completed over a period of 1

year. The first 6 months were devoted to developing the

methodology and preparing the groundwork for implementing

it in the community. Once developed, the study was piloted to

examine the workability of the design and to correct

methodological problems that were encountered. Deaths

among homeless persons were studied over a period

from summer to winter to capture three seasons including

the potential impact of winter temperatures on individuals

exposed to the elements. Twenty-five deaths of homeless

persons were identified and examined during the time of the

investigation. The original goals of the study were to broadly

investigate the impact of homelessness on health and early

mortality. In particular, we were interested in the long- and

short-term social, health and developmental contributors to

homelessness and death (Guirguis-Younger, Runnels, &

Aubry, 2003).

Though earlier findings indicate that there are differences in

mortality patterns identified in different cities (Hwang, 2000),

the methodology presented here is not tied to local context and

can be applied in other communities. In fact, the purpose of this

paper is to provide researchers with a methodology that can be

applied elsewhere, and that can address a wide range of

research questions.

1. Preparation for the study

1.1. Entering the community as a researcher

In laying the groundwork for this type of study, it is essential

to develop a network of community partners. The first phase is

to identify community organizations that provide services to

homeless individuals and to identify the nature of the services.

Community organizations that serve the homeless have a

wealth of information related to factors and issues associated

with homelessness. Some of this information is systematically

compiled and some is informal knowledge acquired, for

example, through direct contact with persons who are

homeless. For this reason, researchers must become familiar

with the community of service providers and develop an

understanding of the nature of frontline work in order to access

pertinent information. Service providers include volunteers,

health care professionals (public health care nurses, doctors,

and clinic employees), social workers, ministers, and outreach

workers. Involvement in the community may entail taking part

in important public forums, such as community conferences,

inter-organization meetings, and public meetings that concern

the issue of homelessness. Researchers must take the time to

establish a visible presence in the community and gain

knowledge and trust through this visibility and participation.

After their presence has been established in the community,

researchers can begin to explain to various stakeholders the

relevance of the work, as it is important to convey at the outset

the value of this type of research for assisting individuals who

are homeless. Various communication strategies can be

utilized to improve community understanding of the role of

research and the potential for finding frontline solutions.

Researchers must be prepared to develop relationships based

on exchange, and one way of demonstrating an exchange of

benefits to the community is to ensure wide dissemination of

information and demonstrate transparency of intent. For

example, research findings in general and their implications

can be made accessible to the public to increase awareness and

to service providers to inform practice. New knowledge that

may have an impact on policy should be presented to the

appropriate government agencies, along with recommen-

dations for feasible solutions and future directions.

Communities vary in terms of the variables affecting

homelessness, such as community size, natural and built

environment, housing, social services, and social policies. It is

important for researchers to understand the significant issues

that have an impact on homelessness in a given community. To

carry out effective research that involves marginalized

individuals, investigators should be prepared to immerse

themselves in the community to become aware of the

challenges facing service providers in a given locale.

There are many research questions that can be addressed

without community involvement. However, a social autopsy

involving a vulnerable population with little documented

information is less likely to succeed without strong support

from the sector of organizations working with this population.

One of the reasons for this is that homeless persons are part of

M. Guirguis-Younger et al. / Evaluation and Program Planning 29 (2006) 44–5446

complex formal and informal networks, which are difficult to

navigate without familiarity. The feasibility of the work is

determined by the success of entering these networks. For

example, tracking the nature and extent of service use of

transient and elusive individuals is extremely difficult,

especially with little formal documentation. Some information

is virtually inaccessible except through the anecdotal reports of

family, friends, and service providers, all of whom are fiercely

intent on protecting the dignity and privacy of the vulnerable

individual. It is imperative that the research is acceptable in the

community with regards to certain issues, such as ensuring

the highest degree of protection of the dignity and privacy

of the deceased individual and his/her family, and demonstrat-

ing the value of the investigation (i.e. its potential to inform

interventions that improve health and social status and/or

contribute to eliminating homelessness).

In our study, we identified more than 40 organizations

involved in providing services to individuals who are home-

less. Heads of organizations were contacted by mail, with

information about various aspects of the study, and were

followed up with a telephone call. The purpose of this contact

was to encourage comments and/or questions regarding all

aspects of the work and to encourage a process of good faith.

Whether organizations chose to participate or not, it was

important that the study and its methods be well understood.

Further, by formally making information about the study

available, organizations were in a better position to determine

the potential extent and nature of their participation. Such

information was crucial to understanding the scope of

community participation, and from the researchers’ perspec-

tive, to determine the limits of the study.

1.2. Defining the research questions

Defining the research questions before embarking on a

social autopsy investigation is crucial. Clarifying the purpose

of a social autopsy study greatly facilitates the choice of tools,

duration of the study, participants, and the kind of data sought.

Some of the questions may be related to the demographic

profile of those who die while homeless, whereas others are

broader questions that relate to immediate causes, as well as

long-term factors contributing to homelessness and untimely

deaths. Further, questions can also be related to efficacy of

specific programs and the search for specific preventive

strategies that would potentially reduce mortality rates within

the homeless population. Based on the research questions,

investigators can then identify sources of information and

assess the accessibility and utility of data to the study. This

process is facilitated by an open dialogue with stakeholders in

the community.

We presented our initial research questions and method-

ology at various local community meetings on homelessness

attended by personnel of health and social service agencies.

The meetings were frequently concerned with issues of service

delivery to people who are homeless, and housing issues. The

purpose of our participation in these meetings was to encourage

community input into developing and refining pertinent

research questions. Furthermore, our participation in these

meetings allowed us to gather information that would be

helpful in developing the methodology. Our research questions

were informed by both the current literature on homelessness

as well as by input from community stakeholders (e.g. one of

our research questions developed around a community interest

in understanding the early contributors of homelessness in

those persons who died). The active involvement of the

community ensured collaboration and support, as well as

helping to develop and sustain the practical relevance of the

study. In view of our strong partnership with the community,

our research can be defined as community-based and includes

elements of participatory research approaches (Reason &

Bradbury, 2001). However, it is important to note that while

wide community consultation was used, the execution of the

study did not involve their direct participation.

2. Required resources

2.1. Community Advisory Committee

Collaboration with community stakeholders is an essential

element in many research and evaluation contexts, especially

when working with marginalized populations. For this reason,

it is advisable that researchers create mechanisms whereby

input from the community can be obtained. Specifically, a

Community Advisory Committee with broad representation is

such a mechanism. The mandate of this committee is to assist

with the definition of research questions, to provide feedback

on the feasibility of methodology, identify data sources, and

facilitate communication between the research team and

community stakeholders throughout the study. In addition to

integrating the stakeholders into the research process, this

mechanism for input is a concrete recognition and acknowl-

edgement of the expertise and knowledge that service

providers possess around issues of homelessness.

A Community Advisory Committee was convened in the

early stages of the research process. Members of the committee

were invited based on their knowledge and experience in a

variety of areas connected with homelessness. Members

included public health nurses, addiction and outreach workers,

ministers, physicians, and social workers providing specialized

services to ethnic groups and First Nations. Meetings of the

committee were scheduled on a regular basis to discuss

methodology, access to information, special cultural and

spiritual issues associated with the research, and ethical

considerations.

2.2. Other resources

There are multiple sources of information that can be

incorporated in an in-depth investigation of deaths of homeless

persons. Some of these are available in the public domain (i.e.

newspaper articles, e-mail distribution lists, and websites). In

some cases, information is also potentially available from

hospital records, coroners’ reports, and police records;

M. Guirguis-Younger et al. / Evaluation and Program Planning 29 (2006) 44–54 47

however, many of these are difficult to access without family or

guardian consent.

We collected data from interviews with individuals who had

a relationship with the deceased (service providers, outreach

workers, family, and friends); from the public domain (e.g.

newspapers, websites dedicated to issues of homelessness), and

from direct observations (e.g. attending the memorial services,

community forums, and meetings of service providers). In

some cases, we were able to study health records. Although, for

many cases, we were able to obtain sufficient data from a

variety of sources that could contribute to answers for research

questions, for some it was difficult to access some data sources

due to time constraints (e.g. police records). Utilizing various

sources of information to study a phenomenon in real time and

within its true context (Robson, 1993; Yin, 2003), we were able

to construct a portrait of the lives and deaths of individuals who

are homeless and found that patterns could be identified by

examining common occurrences across cases.

3. Participants

3.1. Identification of deaths

Generally, a social autopsy study is focused on deaths

occurring in a particular group of people. Although deaths are

documented in the public domain, such as through registries of

deaths, in the case of those who have died and were homeless

these records are not readily identifiable. Therefore, we

identified various possible sources by which cases of death

could be identified such as coroners’ reports, hospital and

social service records, and finally through the informal reports

of service providers working in shelters and outreach services.

Each of these sources is associated with certain challenges and

limitations. For this reason, whenever possible, combining

information from all sources is recommended and provides the

strongest argument based on converging information. On the

other hand, some of these may require procedures specific to

these organizations. For example, access to hospital records or

coroners’ reports requires an ethics review process conducted

by these organizations, in addition to an ethics review process

required in the case of university based research. This presents

a problem for time-limited studies, making this data source

more appropriate for long-term investigations. Access to

formal hospital, social service, and police records usually

require a release from a next-of-kin, which is difficult to obtain

in the case of many homeless persons. Deaths can also be

identified by making a request for information to service

providers and agencies working with persons who are

homeless. Also, it is desirable to consistently monitor

announcements on various websites and list-serves, local

newspapers, and shelters. However, even using information

from all four sources (coroners’ reports, heath and social

service records, reports of service providers, and public

announcements) may fail to identify cases due to certain

limitations. Coroners’ reports and hospital records typically do

not specify the housing status of individuals, and therefore, it is

difficult to isolate homeless deaths per se. Data regarding

deaths collected from informal sources (e.g. service agencies,

public announcements) may be largely dependent on the nature

and extent of contact the homeless individual may have had

with the service. It may be possible to miss cases if the

individual was not receiving services or died in a different

location.

We relied heavily on information from service providers to

identify the deaths of homeless persons. This made laying the

groundwork and developing relationships with service provi-

ders in the community all the more important. Some

organizations posted announcements of deaths on the Internet,

and others sent information directly to the research team.

Further, we monitored the newspapers and local news for

deaths of persons who may have been homeless and pursued

additional information about these cases. Notwithstanding

these efforts, it remains possible that some deaths occurring

during the study period were missed. However, the mortality

rate observed by our study over a period of 6 months (NZ25)

was consistent with local observations from previous years.

This correspondence between mortality rates does not

guarantee an exhaustive sample, but it does suggest a close

approximation.

4. Ethical challenges

There are three levels of participants that should be

acknowledged in a social autopsy study. First, the posthumous

investigation of an individual’s life, in essence, renders him or

her a participant in a study, and therefore, deceased persons can

be construed as first-level participants. In the case of this social

autopsy, first-level participants have not consented to their

inclusion in the study. There is other evidence of ‘consent’ that

can be obtained even though the person is deceased; for

example, agreement to participate obtained from next-of-kin,

and indications that the deceased individual would have agreed

to participate. For the purposes of this study, any indication that

the deceased individual may have objected to being a part of

the study would have been taken as a criterion for exclusion.

This may be considered an overly prudent position, but in the

context of our work we found that this approach was

necessitated by the dominant values of the community agencies

working with people who are homeless. The second level of

participation involves those of organizations that have been in

contact with the deceased individual and that may, therefore,

possess pertinent information in their records. The third level

of participation is of a more personal nature: informants who

were connected with the deceased in various capacities such as

families, friends, service providers, volunteers, etc. There are

ethical and logistical challenges involved in engaging persons

at each level of participation.

4.1. Deceased persons who are homeless

Homelessness places individuals in extremely vulnerable

and marginalized circumstances. During their lives, homeless

persons typically experience poverty, ill health, and multiple

barriers to accessing financial, legal, and social support, as well

M. Guirguis-Younger et al. / Evaluation and Program Planning 29 (2006) 44–5448

as social stigma. In our study, we found that many informants

(including service providers) continued to view deceased

individuals as remaining at risk of further marginalization, and

therefore, there was a desire to protect their privacy and

dignity. In this way, the perception of risk to deceased persons

came from the informants and formed part of the context for

their participation. A social autopsy study involves an in-depth

focus on the life of those being studied and researchers must

take extra care not to violate the privacy of persons who may

have had difficult experiences up to the time of their death.

There are multiple steps that must be taken in order to protect

deceased individuals studied in a social autopsy study. These

include addressing issues related to consent, involvement of

family, and confidentiality.

4.2. Issues related to consent

4.2.1. Participation of organizations

The bulk of knowledge about the lives of homeless persons

is likely to reside with those who are in frequent contact with

them (e.g. outreach and health workers). In some cases, a great

volume of information may be obtained through interviewing

service providers. Frequently, however, service providers are

bound by ethical restrictions from divulging information

regarding clients. These regulations may be dictated by their

particular organization, and in some cases, by professional

regulations and Codes of Ethics regarding privileged relation-

ships. Before service providers are asked to participate,

researchers must familiarize themselves with these regulations

and Codes of Ethics. Some of these regulations may also be

dictates of law. However, certain provision may be made for

information release for the purposes of research and these

should be reviewed carefully and communicated clearly to

potential participants who are service providers and to their

home organizations. Participating organizations need confir-

mation from the researchers that allowing their staff of service

providers to take part is not in violation of professional Codes

of Ethics. Such information would be available in acts

regulating the release of information for research. Where

local laws (e.g. provincial or state law) are not clear, it might be

necessary to consult federal laws, schedules, and guidelines.

All named limitations and statutes must be presented to

Research Ethics Boards from which researchers require

approval, and should be shared with service providers. In the

case of our study, we requested information from service

providers about their clients (i.e. the deceased persons) based

on a provision in the Ontario Freedom of Information and

Protection of Privacy Act (Revised Statutes of Ontario, 1990)

for releasing otherwise restricted information for the purposes

of research. Researchers are required to demonstrate that all

information received is treated ethically, and that confidenti-

ality of participants is protected. Although the relationship

between client and service provider is privileged, researchers

are permitted to make a request for such information.

Regulated professionals (e.g. physicians, nurses, social

workers, psychologists) may assess the study and its

methodology and choose to release the information when

satisfied that sufficient precautions have been taken to protect

their client(s). Laws governing privileged relationships and the

obligation to disclose may differ across states, provinces, or

countries, and must be consulted carefully. In most jurisdic-

tions, laws regarding accessing personal and medical infor-

mation are relaxed after the individual’s death. However,

researchers must familiarize themselves with these issues and

adapt the study design accordingly. This would facilitate access

to information through participating organizations and their

staff.

4.2.2. Family participation and wishes of the deceased

Obtaining informed consent from research participants is a

cornerstone of conducting ethical research. The issue of

consent is a challenge for any social autopsy investigation, as

clearly, consent cannot be obtained directly from first level

participants, i.e. deceased persons. Typically, in posthumous

studies, consent is obtained from the next-of-kin, who gives

permission for participation on behalf of the deceased

individual. In many such studies, the next-of-kin can be

readily identified and contacted. In contrast, homelessness is

characterized by social isolation and lack of connection with

family (Crane, 1994; Layton, 2000). In many cases, the

families are difficult or impossible to locate, and there are many

ethical considerations related to making contact with families.

Nevertheless, information provided by families and others

familiar with the earlier history of the deceased is extremely

valuable and may shed light on the circumstances contributing

to later homelessness. For this reason, obtaining the perspec-

tive of families is extremely important and should not be

abandoned a priori by investigators, but rather approached with

caution.

Occasionally, making contact with the family of the

deceased may not be appropriate. For example, it is not

appropriate to contact families who have made it clear that they

are not interested in being involved in the life of the deceased

person, and/or where there is a documented history of familial

sexual, physical, or emotional abuse. In addition, if, during his

or her life an individual expressed wishes indicating that he or

she did not want contact with family members, this becomes a

sufficient reason to refrain from initiating such contact. This

particular restriction was established in our study to address the

concerns of those who knew the deceased, and in order to

respect the boundaries and personal privacy of vulnerable

individuals. Another important issue to consider is the family’s

knowledge of the social circumstances of the deceased. For

example, researchers are advised to refrain from contacting

relatives or friends whom service providers suggest do not

know that the individual was homeless or that he or she

participated in street life. The reason for this is that researchers

may find themselves in the awkward position of serving as

conduits of information about the affairs of the deceased to his

or her family and friends. This has many ethical implications,

including violation of privacy, causing harm to those who may

be grieved by the disclosures, and divulging confidential

information provided by other sources (e.g. service providers).

M. Guirguis-Younger et al. / Evaluation and Program Planning 29 (2006) 44–54 49

As a way of avoiding the possible pitfalls of contacting

families directly, it may be more suitable to approach some

families with the help of frontline workers (e.g. outreach

workers, hospice workers), some of whom may have

established strong relationships with one or more family

members in the context of caring for the deceased individual.

Based on their involvement with the deceased, service

providers are usually in a good position to advise researchers

regarding the appropriateness of inviting family participation.

In cases where it is appropriate, information about the

investigation and an invitation to participate are then delivered

or mailed to family members by service providers. Services

providers could deliver a sealed package that included

information about the study and self-addressed, stamped

reply envelopes to families or friends. This way, the onus is

not on the frontline workers to obtain consent for participation

from families. The process ensures that the families are not

under pressure to take part in the research and can easily

indicate their refusal to participate by not returning the consent

form included in the invitation package. In addition, the service

providers are not placed in the awkward position where they

could be perceived as advocating for participation, and are also

unaware to whether the information was returned.

4.3. Issues related to confidentiality

In line with ethical guidelines for conducting research, the

identity of the deceased individuals must be kept confidential

by researchers. As well, researchers must ensure that no

organizations or individuals are to be identified as the source of

any particular data to ensure total confidence in the research

and confidentiality of all disclosures. These are common

measures exercised to ensure ethical research. However, within

this general framework, there are several unique issues to be

considered.

4.3.1. Confidentiality of the deceased individual

In the case of qualitative research such as social autopsy

studies, where each case is studied in depth, the task of

preserving confidentiality is more challenging. This is

especially true in the community of service providers where

the description of a case in its entirety or in part, and even in the

absence of a name, could lead to the identification of the

individual. For this reason, although identifying information

must be used to carry out analyses, individual cases should not

be presented in the community or in scientific publications.

Researchers who prefer to present entire cases should use

alternative methods, such as the reconstructed case scenario

(Papadopoulos, Scanlon, & Lees, 2002) to avoid compromising

confidentiality. Most research questions can be answered by

studying the patterns and factors presented in the study of many

individuals. Qualitative methods of data collection and

analyses when done with multiple individuals can provide an

in-depth understanding of patterns, themes, and potential

relationships among complex variables (Robson, 1993; Yin,

2003).

4.3.2. Confidentiality of participating organizations and their

employees

In accordance with a general policy of protecting sources,

researchers should protect the identity of organizations that

choose to participate in a social autopsy, as well as of those

who decline participation. The release of such information

might affect a given organization’s standing in the community.

This applies equally to individuals within organizations. For

example, once an organization has agreed to participate,

individual service providers with that organization remain free

to participate or decline. The decision of any given service

provider should not be communicated to his or her

organization, other organizations, or other service providers.

This allows the individual service providers to make a decision

that will not affect his or her employment or status in the

workplace or in the community of service providers and

individuals who are homeless.

5. Research team

Data collection is a very sensitive part of the social autopsy

research process of the investigation. It is essential that

interviewers and those handling the data understand the full

ramifications of doing research involving vulnerable people. A

team format is recommended because it can encourage

exchange of experiences, ideas, and concerns, as well as create

an atmosphere of support. All members of the team must be

familiar with the study tools and protocol, including procedures

to protect informants’ confidentiality and anonymity, as well as

ethical issues concerning data collection. The study rationale

and full methodology should be made clear to all those

involved in data collection during a formal training program

for the field team.

5.1. Competencies

It is important that interviewers involved in social autopsy

studies have certain competencies. In particular, it is preferable

that they possess strong interpersonal and communication

skills, have had previous experience with individuals who are

homeless, and good knowledge of applied social research

methods. Individuals who are part of the field team should be

made explicitly aware that many of the matters discussed in the

interviews may be sad, and in some cases shocking in nature.

For this reason, interviewers should possess enough skills to

manage their own emotional reactions as well as possible stress

reactions from others. Interviewers must have the skills to

conduct the interview in a respectful and empathic way,

especially when addressing grieving families, vulnerable

persons, and service providers, all of whom may be

experiencing grief related to death.

5.2. Feedback

Feedback from interviewers can inform a developing

methodology and improve many aspects of the study. This

can be accomplished through regular team meetings, at which

M. Guirguis-Younger et al. / Evaluation and Program Planning 29 (2006) 44–5450

researchers and interviewers discuss issues encountered in the

field and troubleshoot any problems. This process ensures the

on-going communication between the researchers and those

who are in direct contact with informants.

5.3. Exclusion criteria for the interviewers

It is also important to recognize that certain individuals, by

virtue of their position in the community, may not be

appropriate as interviewers. Individuals who are currently

employed as health and social service providers with people

who are homeless should not serve as interviewers, because of

dual role with those individuals being interviewed. For

example, an individual who is homeless and receiving services

may be reluctant to provide criticisms of these services to a

service provider. In general, people who are collecting the

information should not have an interest or a direct role in

services provided to or by informants, or have decision-making

power regarding the quality, quantity, or nature of service

provision.

5.4. Manual/practical guides

It is suggested that a training manual be developed for

interviewers. Such a manual can serve as a reference document

and would contain information about recruitment, consent

procedures, safety issues, and a list of contacts in case of an

emergency. Some other valuable elements that can be

incorporated into the manual include documentation regarding

organizations providing care for those who are homeless,

multicultural funeral practices, interviewing methods, and

counselling services in the community.

5.5. Training and support

Our field team consisted of three interviewers with

experience in both the delivery of social services and research.

All interviewers had previous experience interacting with

individuals who are homeless and were actively working on

other research projects in the area of homelessness. The team

consisted of graduate students in clinical and community

psychology and persons trained in social services and

associated practices. The training session involved a full day,

during which the team was given an initial presentation

outlining the goals and the methodology of the study. A

substantial portion of the workshop was devoted to familiariz-

ing the team with the instruments. The discussion and exercises

related to the use of the study tools proved quite helpful in

terms of developing the skills required for proper use.

Interviewers were also trained to assess exclusionary criteria

for informant participation, such as cognitive capacity, level of

distress, and environmental safety. A presentation and

discussion of sensitive issues surrounding death and home-

lessness, such as the individual’s rights to confidentiality and

anonymity, and the ethical boundaries of research, were also

included in the training.

Throughout the study, interviewers were provided with

support and necessary resources to help them manage the

demanding nature of the interviews. For example, while

interviews were being conducted, a resource person (usually

the principal investigator) was ‘on-call’ to answer urgent

questions that might arise. Interviewers were encouraged to

ensure easy access to a telephone during the interview.

Interviewers were provided with a list of services available

for homeless persons (e.g. shelters, grief counselling, and

medical needs) in case direct requests for services were made

by persons being interviewed. If requests were made,

interviewers provided the individual with information on

how to access resources or referred them to persons who

could follow up. Researchers should be prepared to discuss

problems, questions, comments, and observations reported by

the interview team, and in some instances make modifications

based on these discussions. For example, if interviewers found

that certain wording of a question caused confusion, alternative

wording for future interviews should be considered. Similar to

developing methodology in other studies, the input of

interviewers in improving the methodology is important during

the pilot phase of the study.

6. Instruments

Due to the sensitivity of social autopsies and the vulnerable

nature of the population being studied, it is important that the

interview questions be based not only on the needs of the study

and the current literature, but also integrate input from

personnel in community agencies serving this population.

When gathering sensitive information on deceased homeless

individuals. The use of semi-structured or open-ended interviews

with family, friends, or service providers is preferred. The

reason for this is that informants are more likely to want to

provide a complete story about the deceased individual, rather

than answer a series of questions. A semi-structured format

ensures the coverage of research questions, but allows

informants the freedom to provide rich and detailed infor-

mation in a natural conversational style.

Depending on who is being interviewed (e.g. families,

service providers) several versions of the interview guide

should be designed. When interviewing families, it may be that

the interviewer is provided with a history of the individual’s

homelessness (e.g. how it started and when, what were the

initial markers, developmental history), whereas friends are

more likely to provide recent information regarding the

deceased individual’s life (e.g. street involvements, function-

ing, activities, events leading to the time of his or her death,

attitudes, wishes, etc.). While the instruments should be

designed to answer specific research questions, they should

be flexible enough to allow the collection of extensive data

about broad aspects of the individual’s life. Appendix A

contains sample questions extracted from a tool designed to

gather information regarding an individual’s developmental

history and Appendix B contains a list of potential areas of

interest for looking at the lives of individuals who have lived

M. Guirguis-Younger et al. / Evaluation and Program Planning 29 (2006) 44–54 51

and died homeless. These are examples of tools and areas

covered in interviews in our study.

7. Possible limitations of the social autopsy methodology

Working with persons who are homeless, their families, and

their friends is a complex task. There are many challenges that

face this type of inquiry, both logistical and conceptual. This

complexity can present difficulties with study design and data

collection, and can obscure interpretation. Some of these

challenges will be discussed here.

First, definitions of homelessness are pivotal in terms of

developing research questions and ultimately, analysing and

interpreting the data. Some definitions of homelessness

inadvertently exclude individuals, such as those who are

using a series of temporary arrangements with friends and

family. Other definitions exclude those who were homeless and

are now housed, but who otherwise remain dependent on a

system of services targeted toward homeless persons; in other

words, individuals with a history of homelessness and at risk of

becoming homeless. These issues extend more broadly than

social autopsy work and affect many aspects of research on

homelessness. However, it is necessary to consider the impact

of such definitions when interpreting the findings of death

investigations in this particular population.

Second, though the social autopsy methodology can be used

in various contexts, it is imperative that interpretations of the

data are mindful of the regional context of the study. Resulting

data and patterns may vary by economic, ethnic, and political

realities of countries, regions, or cities. This is particularly

pertinent for researchers attempting to conduct a social autopsy

in rural areas where informal networks may be more significant

(e.g. churches) and access to sources of data may not be readily

available through formal channels (e.g. service agencies). The

nature of data collected from formal versus informal sources is

quite different. For example, information gathered from formal

service agencies such as hospitals or shelters tend to reflect

demographic status (e.g. age of death, gender, service use

patterns, and extent of contact with shelters), whereas data

collected from informal sources tend to focus on familiar

individuals and their stories. Both types of data are important,

but answer different research questions and have inherent

strengths and limitations: formal sources provide an overall

picture of the face of homelessness and death, and informal

sources provide the depth and context needed to interpret these

patterns.

Third, there are certain aspects of homelessness that may

skew data collection and restrict data sources available to

investigators. When conducting a social autopsy on individuals

who are homeless, the respondents may disproportionately be

persons who were involved in a service provision capacity with

the deceased individual. This may be because people who are

homeless generally have few close personal relationships.

Researchers should be aware that the resulting data might

therefore be skewed toward a problem-oriented view of the

homeless individual. Homelessness is a social construct with

many broad facets, some of which may not have been

uncovered.

Family and friends are often difficult to locate. Information

about the deceased’s personal history is highly valuable, but

rarely available. In many ways, qualitative analyses uniquely

allow investigators to arrive at conclusions from the in-depth

study of a few cases. However, there may be an inherent bias in

cases where the families were available versus cases without

family involvement: that is, cases where families were not

involved may represent a more isolated group of homeless

individuals, with little information about personal history.

Inevitably, there will be gaps in the final data. There are

many barriers that make it difficult to collect complete case

profiles. For example, some individuals who died homeless

may have no known family, and therefore, no one to comment

on their personal history. In such cases, it is difficult to explore

the circumstances that may have brought them to home-

lessness. Similarly, some of their friends may have also died

homeless, or if alive may not consent to an interview. This

would curtail obtaining information about some deceased

individuals’ activities and their lives on the street; a unique

perspective that can only be given by few persons.

Essentially, the social autopsy methodology strives to

provide a complete portrait of a person: his or her life and

death. Realistically, researchers can anticipate incomplete data

in some cases. However, this methodology allows researchers

to build profiles of the target population, contributing to the

understanding of the relationship between the circumstances of

someone’s life and his or her death.

8. Knowledge transfer

Researchers have an obligation to engage in multiple levels

of knowledge dissemination that can be translated into

preventive strategies and social action. Some of the avenues

for distribution are academic venues, government and service

agencies, charitable and independent organizations involved

with this population, policy makers, service providers,

families, and through the powerful tools of the media and the

Internet. The knowledge dissemination phase of the research is

extremely important, and is best executed in a planned fashion

to ensure maximum utility of the findings. In addition to

impacting preventive and treatment strategies, researchers

should also consider increasing public awareness about

homelessness an important goal of their work.

9. Concluding remarks

The face of homelessness is constantly changing, mani-

fested in changes in the demographic composition of the

homeless population, patterns of service use, and mortality

rates. Homelessness has been described as a ‘fluid social

problem’ (Fitzgerald, Shelley, & Dail, 2001). From a research

perspective, the study of homelessness and death also requires

multiple and flexible methodologies. In order to gain a better

understanding of the nature of homelessness, its causes and

consequences, and its evolution, multiple approaches are

M. Guirguis-Younger et al. / Evaluation and Program Planning 29 (2006) 44–5452

needed. For example, the social autopsy method as a technique

allows for an in-depth look at individual stories of home-

lessness that can be conducted as case studies. In addition,

social autopsies can also be designed to look at macro-level

variables, such as the relationship between individual variables

such as age, gender, and/or ethnicity to national trends of

homelessness and mortality; or the relationship between

service infrastructures and mortality. When combined with

work done on long-term contributors to homelessness (e.g.

panel studies), social autopsies can be a powerful tool for

interpreting patterns of homelessness and untimely death.

The success of this type of research depends on the

preparedness and capacity of researchers to respond to the

arising logistical challenges and ethical controversies. For

these reasons, this discussion sought to provide researchers

with tools and procedures to meet the challenge of conducting

this type of research, and also to provide guidance and a frame

of reference for a social autopsy methodology. Continued

research in the area of homelessness is an essential step to

increase social awareness, inform intervention, augment

service capacity, and build preventive programs.

Acknowledgements

This study was funded by the City of Ottawa through the

federal Supporting Community Partnerships Initiative of

Human Resources Development Canada. We are indebted to

the support of many organizations, including the City of

Ottawa Public Health and Long-Term Care, Alliance to End

Homelessness, City of Ottawa Homelessness Initiative Team,

Institute of Population Health, and Inner City Health Project.

Appendix A

Some samples extracted from tools designed to gather

information regarding an individual’s developmental history.

A.1. Interview with field worker/volunteer/public health

nurse/other service provider

(Introduction) This interview is more of a conversation

about the life and death of - - - - -. We would like to learn

everything that you can recall about this person’s life.How long have you known - - - - - to be on the street

(without secure housing)?

Can you describe the person’s housing circumstances (in the

last 3 months, do you know where - - - - - slept and what type

of housing?

And what were the person’s housing experiences?

Was there ever any successful housing of which you are

aware?

Are you aware of any circumstances around how - - - - -

became homeless?

A.1.1. Daily challenges

Were you aware if - - - - - faced any particular challenges in

his/her day-to-day living?

† Can you describe what you know about this challenge?

† Do you think the challenge had an impact on his/her daily

living?

† Do you think that challenges impacted on his/her social

life?

† How do think this challenge affected his/her access to

services?

† Do you know how - - - - - coped with this challenge?

† Do you know if he/she used assistive devices?

† Were you aware if - - - - - asked assistance from others? For

personal care, attendant care? Who?

A.1.2. Events prior to death

Were there any changes that you noticed in - - - - -’s life in

the period prior to his/her death?

Were there any changes that you noticed in - - - - - (person)

in the period prior to his/her death?

Do you think that this death was preventable?

Do you think that there were any immediate or long-term

measures that could have been taken to prevent - - - - -’s death?

If yes, what were those measures?

A.1.3. Comments and closure

How did - - - - - perceive his/her homelessness?

What helped him/her cope when the times were tough?

Do you have an impression of what - - - - -’s vision and

wishes for his/her future? What they hoped for?

Was there anything else that we have not asked you that you

feel is important for us to know about this person?

A.2. Interview with family member

(Introduction) I am going to start by asking you, is there

anything you would like to tell me right away? We would like

you to feel free to tell us - - - - -’s story. You can start at the

beginning or anywhere you like. We might have some

questions for you at the end.

Tell me about - - - - -’s childhood or earlier years

† What were - - - - -’s likes and dislikes, hobbies, favourite

music, favourite sports

† Did they have a good childhood?

† Any disruptive or odd behaviour?

† General health?

† Any disability?

† Have friends, play with other kids? What was that like—

describe games?

† Felt about school?

† Felt about family? Got along with siblings or others his/her

own age?

† Did - - - - - live in the same place for most of his/her earlier

years?

† Contact with law?

† Was - - - - - ever away from home for an extended period of

time, e.g. Child welfare system, foster care, detention,

and/or long hospitalisation?

M. Guirguis-Younger et al. / Evaluation and Program Planning 29 (2006) 44–54 53

† Was there ever any extended separation from parents or

brothers and sisters?

What do you think were the events that led - - - - -to be

without a home and live on the street?

† Any contact with him/her?

† Nature of contact? Length?

† Do you think there was a pattern to - - - - -behaviour or

something about the that led to them being homeless?

How do you want us to best remember - - - - -? Is there

anything that we did not ask you that you feel is important for

us to know?

A.3. Interview with friends/acquaintances/peers

We would like to learn more about - - - - -’s life.

† Relationships with others?

† Spirituality? Spiritual advisor, e.g. pastor, elder?

† Participate in social events/social activities? Team sports?

† Have closer friends: one or two special people?

† Have someone they could trust?

† Get along with others?

† Romantic involvement?

† Family relations any contact with family?

† Relationship with field workers, doctors, shelter staff?

† Contact with the law/socially disruptive behaviour?

† Education?

† Work/career? Work relationships

† Family life, children, partner?

Do you have an impression of what - - - - -’s vision and

wishes for his/her future? What he/she hoped for? What is your

best memory of - - - - -?

Appendix B

Important aspects of an individual’s life affected by

homelessness

B.1. Daily activities

† Housing/shelter

† Daily challenges

† Daily living: basic needs shelter accommodation and

housing experiences

† Income

B.2. Social participation

† Friends, social supports

† Ability to get along with others

† Cultural groups

B.3. Health

† Physical and mental health status and care

† Substance use and addictions

† High risk behaviours

B.4. Early experiences

† Family background and family influences

† Early attachments and significant others

† Contact with the law

† Separations from family (e.g. foster care, detention,

hospitalisations)

B.5. Spirituality

† Religious and spiritual themes

† Practices

† Contact with religious leaders/institutions

B.6. Personal profile

† Personal characteristics: personality, style, self-perceptions

† Perceptions of homelessness

† Visions/hopes for the future

B.7. Work and education

† Education

† Work and vocational activities skills

B.8. Significant life events

† Possible significant events leading to homelessness

† Events prior to death changes in the individual, in their life,

service provision issues etc.

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