Research Ethics and Homeless Participants

A research study looking at services for people who are homeless in New York has been receiving a lot of press.  In a nutshell, the program looked at randomizing homeless families to a new model of a centralized hub of services, or to usual care.  You can see my comments on why a research ethics board might support this program here and here.  Strong arguments against the project are here, here, or here.  In a nutshell, the ethical question comes down to whether there is reasonable grounds to believe that we already know that the intervention (in this case a program called HomeBase) will work.  If we know this, then it is unethical to withold it from anyone in the name of research.  I would say that the jury is clear, and that this study is indeed unethical.

Here’s the issue, we only have limited funds to work with, so we want our programs and interventions to be effective as possible.  One powerful way to determine effectiveness is to randomly assign people to different programs, and monitor the outcomes.  This is the basis by which all medications are trialed, and this type of research is very good at answering certain questions.  However, in the real world it’s tougher to justify a control group, as any service is likely to be more effective than usual care for people who have been marginalized in the most absolute sense, who are homeless.

It was with this mindset that I heard Martha Burt of the Urban Institute suggest at the “Rethinking Homelessness” conference in Montreal that randomized control trials are necessary to assess homelessness prevention programs.  I approached her afterwards and asked her about the ethics of this, and I think she convinced me of one case in which randomization to services with homeless people is ethical.

Martha suggested that in the vast majority of cases for people who apply to homelessness prevention programs, without any assistance they would not become absolutely homeless.  Most people find ways to avert homelessness on their own, and for only a small percentage, this doesn’t work.  So, the challenge with homeless prevention is that it’s hard to know if you are simply preventing homelessness with wouldn’t have happened regardless.  In this case, randomizing people to usual care and an intervention becomes ok ethically, as usual care is enough to meet the needs of most people.

However, I could be wrong, so argue with me on this one.

Politics Matter

If you watched my previous video, I noted that I am part of a group that is organizing a grassroots movement to take action on homelessness and health.  One of the actions this group is looking at taking is connecting health care providers with street level workers, to provide first aid type care.  Although we have a primary health care clinic as well as a family health team in London, Ontario for homeless persons, street-level, immediate care is still a gap.

To facilitate this process, I have been connecting with an organization called London CAReS, that provides support and harm reduction services for people experiencing homelessness, with a focus on addictions.  I had the privilege of spending the afternoon today with one of the workers, and it was particularly nice to catch up with some clients I haven`t seen since moving into academia.  London CAReS is rather a unique program in that it receives core funding from the municipal government, rather than being covered by provincial health or social dollars.  I believe that this is a commendable achievement for London, to engage financially in this type of proactive service.

Interestingly, today is also a municipal election.  That means that the council which has approved funding for London CAReS could change drastically at 8pm tonight.  In particular, there is a mayoral candidate running who is talking about a 4 year property tax freeze, which would equate to a $90M loss to the city.  Such a freeze would put programs like London CAReS in jeopardy.  Interestingly, some of the workers that I connected with today seemed only vaguely interested in the election.  However, if we believe certain programs are essential, then we need political will to create, enhance, or maintain them.

So, like it or not, politics matter.

Why Charity Will Never be Enough

I want to start this post by saying don’t get me wrong, charity is very important.  Please, please, please continue to give your time, money, and effort towards those who you feel motivated to help.  Many agencies survive entirely on charity, are supplement their services greatly through donations and volunteers.  So please, don’t take this as a post bashing charity, as it is an important piece of the puzzle.  It just isn’t the whole puzzle.

At the health centre where I worked as a nurse, we provided our homeless clients on request with items like toiletries, bus tickets, shoes, socks, and food.  However, the demand was great, so we were forced to put a number of restrictions around the giving of these items.  So, for example, we would receive a supply of bus tickets at the start of each month.  If we were to give them to everyone who asked, they might last a few days.  Instead, we built in a policy that they are only to be given to those who have a medical appointment to attend that we have booked.  This makes them last most of the way through the month.

So, we could get more bus tickets (or food, or toiletries, socks & shoes), and give them out more freely.  However, the need is so great, and the poverty to absolute, that we could easily consume the entire budget of the entire centre on these basic necessities.  And, if services in London became this comprehensive, we would simply draw more individuals who would hear through the grape-vine that you can have all your basic needs met in London (sadly, this would be a novelty).

The thing about charity is that, in a broken system, it will never be enough.  The gap between the rich and the poor in Canada continues to grow, unemployment is going up, and shelter usage is increasing.  There is no way that we can keep pace with this with our existing charitable giving.  Rather, we need to refine the system, and decrease poverty as a whole.  I would suggest that charitable donations to your local shelter or soup kitchen, should be accompanied by similar energy and resources given to social and political action.  Someone has to turn the train around.

Homelessness in London, Ontario

I had the privilege of presenting at an event called Ignite London.  This is a trend happening in cities around the world, similar to TED Talks.  However, at an Ignite event you have only 5 minutes, and 20 slides that are pre-timed.  The idea is to give an inspirational talk, but make it quick.

I took the opportunity to address a question that I hear often, “Why is there homelessness in London, Ontario?”  I presented my belief that the variation in statistics around homelessness from country to country demonstrates that homelessness is a policy issue, and that if we had comprehensive enough policies, we could completely eradicate homelessness.  Note, my email address is wrong in the presentation and should read aoudshoo@uwo.ca

Dedication to the Cause

This past week I was in Kingston, Ontario preventing at the !nstigate Anti-Poverty conference (you can see my presentation here).  On Friday at lunch the conference organizers suggested we go and see a protest being put on by the catholic sisters at Kingston City Hall.  I was intrigued, so went to check it out.

The Sisters of St. Vincent de Paul have been standing at City Hall every Friday from 12:15 to 12:45 since 1995 when Harris cut social assistance rates.  They stand with signs protesting poverty in their community.  At the same time, the sisters provide a soup kitchen called Martha’s Table in Kingston.  They consider the protest to be an essential supplement to the hands-on work, balancing service and political action.

I was struck by the length the protest, and their dedication to the cause.  Two of the sisters I talked to had been with it since the very beginning, and made it out most weeks.  There was also a great selection of other people who were taking time out of their lunch to join in.  Some might mock based on the lack of success, but I think that if we surrender when things don’t go our way, there would be no one to push the anti-poverty agenda.  I have been involved in health care with homeless people for only 5 1/2 years, I hope that in 10 years time I will still be showing the same dedication these wonderful ladies have shown.

“The good we secure for ourselves is precarious and uncertain until it is secured for all of us and incorporated in our common life.” – Jane Addams

Homelessness and Health Care Access

The health concerns of people experiencing homelessness are aggravated, or possibly caused, by the fact that many encounter barriers to accessing formalized health care services beyond emergency rooms.  Statistics demonstrate the lack of formalized care that homeless persons receive.  A study in Germany found that 90% of homeless people are “urgently in need of medical treatment (Trabert, 1997, p. 378).  In a large American study (Burt et al., 1999) it was found that of the sample of homeless persons involved, 24% required treatment from a physician but were unable to obtain this treatment.  Similarly, in a French survey of 838 homeless persons (Kovess & Mangin Lazarus, 1999), only 53% of those who were experiencing an active psychiatric condition were accessing formal care.

The barriers to care are many, and vary with the local context, but generally include social isolation.  Social isolation is both a causal factor and an outcome of experiencing homelessness.  In a phenomenological study of the experiences of homeless men, Lafuente (2003) found that homeless men are socially isolated in that they experience rejection both from within (i.e. rejection of one’s self) and from others.  This social isolation, and the level of social isolation, is predictive of not receiving regular formalized health care (Gallagher, Andersen, Koegel & Gelberg, 1997).  The mechanisms that link social isolation to a lack of accessing regular care include the development of a mistrust of health professionals and an unwillingness to disclose personal information.  Additionally, by being isolated from society, people who are experiencing homelessness will have a decreased knowledge of the available services and the means of accessing these services.

Competing demands or priorities, also referred to in psychology as the hierarchy of needs, may prevent homeless persons from taking the time to access formalized health care services.  Kushel, Gupta, Gee and Haas (2006) found that housing instability, taken as a proxy for competing demands, was associated with having no usual source of formalized health care.  This finding is identical to previous work that measured ‘competing demands’ directly as an independent variable (Gallagher, Andersen, Koegel & Gelberg, 1997).  Homelessness is a chaotic experience in which individuals struggle to meet their basic needs.  Homeless persons need to simultaneously find food, shelter, and clothing, attend appointments, obtain transportation, obtain or maintain an income, and attend to their acute health care needs.  If one’s time is consumed simply trying to survive, dealing with health concerns may be seen as a luxury and not attended to until they become completely unmanageable and threaten this ability to survive.  Additionally, the length of time required to receive health care services compounds the issue of competing demands, and links directly to the third issue of prohibitive bureaucratic structures.

For homeless Canadians, a major barrier is the lack of personal identification, including the lack of a health card.  Within the turbulent existence of a homeless person, identification is frequently lost or stolen, and is difficult to replace due to complicated procedures, the requirement of having other identification to replace missing identification, and fees charged for replacement.  Another barrier is the accessibility of health centres that specifically serve homeless persons, such as community health centres or shelter-based health centres, as they are often only open during business hours.  Additionally, these centres often have complicated intake procedures to ensure that people are not receiving care from more than one physician.  These intake procedures may be too complicated or too prohibitive for people who are living a chaotic life, dealing with mental illness, or dealing with addictions.  For example, these intake processes may involve multiple scheduled visits, with a population for whom keeping scheduled appointments may be difficult.  Lastly, there is often a cost involved in transferring health records from previous sources of care to the current physician, a process that is often a mandatory step before care is available.

In addition to these other barriers, homeless persons frequently experience negative attitudes from health care providers.  These negative attitudes have been identified as the primary barrier that homeless persons face in obtaining health care services (Ensign & Panke, 2002).  Negative attitudes do not go unnoticed, with one Canadian study showing that 40% of homeless persons felt they had received less-than-ideal care, and 1/3 had been treated rudely when using emergency rooms (Crowe & Hardill, 1993).  Studies have shown time and again that homeless persons face disrespect, stigma, prejudice, dehumanization, judgmentalism, being ignored, and insensitivity from health care professionals.

Homelessness and Health – A Primer

In spite of the variation in causes and experiences of homelessness, for all who experience it, homelessness is an experience that compromises one’s health.  And, as suggested by the Ottawa Charter, this has to do with more than physical illness, and includes the social determinants of health (e.g. income and social status, social support networks, education and literacy, employment/working conditions, social environments, physical environments, personal health practices and coping skills, healthy child development, biology and genetic endowment, health services, gender, and culture).

For most individuals, homelessness is a transitional state rather than a permanent situation (Buck, Rochon, Davidson & McCurdy, 2004), and during this time much can occur that exacerbates existing health concerns, or creates new ones.  Understanding the health impacts of homelessness is somewhat complicated in that many of the conditions faced (such as mental illness, substance use and chronic health conditions) can be both causes of and results of homelessness, but the case of negative health impacts of homelessness is well established (Daiski, 2007).  Most striking in terms of the negative health effects of homelessness is the high mortality rates of homeless persons, with mean age of death ranging from 35-47 years (Podymow, Turnbull & Coyle, 2006).

Statistics on acute and chronic conditions and homeless persons are striking.  Street Health in Toronto, Canada found that 55% of homeless persons have a serious physical health condition, and 63% of these have more than one (Street Health, 2005).  In Western nations, psychiatric conditions such as psychosis, major depression, personality disorders and addictions are higher amongst homeless persons than the general public (Fazel, Khosla, Doll & Geddes, 2008).  These conditions can in part be caused by and exacerbated by the challenges that homeless persons face in taking medications as prescribed, risk of injury , lack of access to good hygiene, poor nutrition and exposure to the elements, social isolation, and exposure to physical and sexual violence.  In one study, when asked about their health concerns, homeless men focused on broader health and safety needs and acute conditions, rather than chronic illnesses (Lafuente, 2003), an important consideration for the structuring of health care services for homeless persons.

Why Have World Homeless Day?

The first inaugral World Homeless Day went off with a fizzle.  In covering it, the best that the Huffington Post could come up with was an article from Calgary mentioning that an extra breakfast and lunch were served for the day.  This was to replace a Thanksgiving dinner that used to be served.  Not exactly front-page news.  Now don’t get me wrong, I realize that these things take time to gain momentum, and I’m sure it will be better recognized next year.  As well, there were another of activities that took place and just didn’t get much coverage.

However, the general lack of uptake leads me to reflect on the basic question of why we have World Homeless Day?  On the World Homeless Day website, the purpose is stated as “to draw attention to homeless people’s needs locally and provide opportunities for the community to get involved in responding to homelessness”.  Is this something we need?  When the idea of WHD was presented at the London Homeless Coalition meeting, 95% of our time was spent on debating the logo, versus planning any activities or press.  Were we all just too busy, or was there a general feeling that the day was not useful?

I think that to answer this question, you need to look back to my post on the root causes of homelessness in Canada.  My basic premise is that homelessness is not a personal issue, but a policy issue.  This includes policy at the national, provincial and municipal levels.  And, policy is a political manner, and political will follows public will.  Therefore, I think that anything that can be done to raise awareness around homelessness, and generate compassion for people experiencing homelessness, is time well spent.  If public feeling swung towards empathy around homelessness, and a desire to provide assistance to eradicate it, we would see governments forced to refine and implement healthier public policies.

Therefore, I believe that we dropped the ball on this one.  Next year we need to take advantage of this opportunity to do something that will get some press, and will raise awareness.  I have an idea of getting volunteers to sit along Dundas street with hand drawn signs, similar to panhandling, but with messages that will educate people.  Of course, 10/10/11 lands on Thanksgiving Monday, so we may have to do it on 11/10/11.

How Many Are Homeless?

In Canada, survey data from the late 1980’s estimated that over 100,000 Canadians were homeless (McLaughlin, 1987).  However, at the same time an estimate of 130,000 to 250,000 began to circulate based on a belief that such surveys underestimated the true numbers (Begin, Casavant, Miller Chenier & Dupuis, 1999).  This number is likely quite inflated, as we do have regional statistics to extrapolate from.  Homelessness counts have been done in many regions, and tend to vastly underestimate true numbers, but have found 2100 homeless persons in Vancouver, British Columbia (2002), 3100 homeless persons in Edmonton, Alberta (2008), and 5,000 homeless persons in Toronto, Ontario (2008).  These numbers coincide roughly with the Federation of Canadian Municipalities (FCM, 2008) report that found 14,000 regular shelter beds in 21 participating Canadian municipalities.  Recognizing that shelter users are only one group of people who experience homelessness, estimates around 30,000-50,000 or 0.1-0.2% of the population are likely most accurate.  However, this number is far less than the 1.5 million Canadians who are at risk of losing housing (Laird, 2007).

In terms of London, Ontario, statistics are again difficult to obtain, but there is some data to work from.  A study in 2003 found that shelters in London served approximately 4000 persons in a year (De Bono, 2003).  This points to the transitional nature of homelessness, as in a review of shelters in London in 2005, it was found that there are 641 total shelter beds.  Therefore, each shelter bed is occupied by 6-7 different individuals through the year.  Again, individuals who stay in shelter only represent a portion of the homeless population.  There are 18 food banks and 33 agencies that provide meals within the city (London Free Press, 2009), although these service all persons living in poverty, not just homeless persons.  As well, 12% of London families are considered to be low-income (OrgCode Consulting Inc, 2010).

Despite challenges in obtaining statistics, it is not necessary to have exact numbers on homelessness to know that this is a major social concern that needs to be addressed.  Human Resources and Social Development Canada on reviewing the available statistics on homelessness suggested that obtaining these numbers would be useful, but still recognized the importance of the problem and in 2007 granted $269.6 million over two years to address homelessness.  What is more important than the absolute numbers is that it has been found that the incidence of homelessness is increasing, and has been increasing consistently since the post-depression era (Timmer, Eitzen & Talley, 1994).  The most conclusive data to support that this is an increasing problem comes from shelter usage statistics, which have increased consistently and continuously across North America (Wright, 2000).  Official statistics are important, but we also must not ignore personal anecdotes coming from service agencies and providers highlighting the increase in homelessness.  This is the impetus that is causing national, provincial and local governments to take action.

The False Promise of NIMBY

NIMBY – Not in my backyard.

This has long been the response of many housed citizens towards homelessness, a focus on moving the problem rather than dealing with it in any effective, long-term manner.  Interestingly, we see this phenomenon in broader political situations as well, in particular with the Romani people this year in France.  As France expels Romani people from the country, other EU nations suggest that this is not a long-term solution, and simply shifts the problem elsewhere.  NIMBY is a by-product of human selfishness, rather than human concern.

Joe Anybody has a good post on RV dwellers in southern California.  As communities seek to push them out, nothing is solved, people are simply forced to go elsewhere.  The same issues have come up here in London, Ontario on the local level, with concerns raised regarding methadone clinics near schools, social assistance offices in the downtown core, or shelters near busy streets.  It seems that no one wants to be confronted by poverty.  However, people will be in the area of the city that they need to be in, so it makes most sense to me to locate services where people are, rather than making transportation an even bigger problem for people who are experiencing homelessness.

This is also a bigger issue than just locally, as evidenced by the large number of homeless persons that come to London from surrounding rural or small town areas.  Because London has services to people who are homeless, individuals come here from other towns that have nothing.  This demonstrates how each municipality needs to consider how their policies will effect others.  So, when London creates anti-panhandling laws (as mentioned in this excellent post by Andrew Schiestel), some people will move to other cities where they find it easier to survive.  Similarly, if we were to suddenly create all the services that we know are needed, there would be a massive influx of people coming to access these services.  For example, if we were to start a wet shelter, it would be beneficial for Windsor, Kitchener, and others to start them as well.

It is important that we seek solutions to social problems such as homelessness, rather than finding ways to move them further sight.