Posts Tagged 'hard-to-reach'

When H1N1 visits food banks and shelters, what then? We need a plan

Coughs and sneezes spread diseases. Trap the germs in your handkerchief.  ~  World War 2 health slogan

Charities and non-profits provide critical services to communities across Canada. What if they are not adequately prepared for an H1N1 outbreak? asks Marcel Lauzière, head of Imagine Canada, a national program to promote public and corporate giving, volunteering and support to the community.

In an opinion piece that appeared in a number of Canadian newspapers this week, including the Winnipeg Free Press, Lauzière attempts to bring to public attention the potential impact of the H1N1 pandemic on Canada’s charitable and non-profit organizations. From the blank looks and long pauses over the phone he says he has been experiencing when he starts talking about it, it is apparent that this issue is still languishing at lower levels in the nation’s health bureaucracies.

The focus of most official attention is on hospitals, schools, businesses, First Nations reserves, and vulnerable individuals like pregnant women. There is a lively and useful public debate about how prepared we are, and how prepared we should be, for a major outbreak. But charities and non-profits are too often not part of the discussion. Left out of the picture is the fact that charities and non-profit organizations deliver critical services to Canadians. If the H1N1 epidemic is severe, what will happen if charitable organizations lose up to a third of their staff and volunteers to illness?

What if food banks start closing? How will desperate families feed their kids? What if meals are no longer prepared and delivered to elderly people who can’t get out and who have no friends or relatives nearby to help them? What about Canadians needing dialysis or chemotherapy but who can’t get to the hospital because there are no volunteers to drive them? What about the thousands of children and their families who rely on local sports and recreation and arts and cultural organizations for their weekly activities? What if the homeless shelters shut their doors in the middle of winter?

As a third pillar of Canadian society alongside governments and business, charities and non-profit organizations are part of an intricate system of societal supports that significantly improve the quality of life in Canada. They are also a significant part of our economy. “The sector generates more than $87 billion annually, a contribution of almost seven per cent to Canada’s GDP. It employs more than 1.5 million Canadians (full-time equivalents)and mobilizes 12.5 million volunteers in Canada.”

Lauzière refers to the importance of “business continuity” during an outbreak and the plans that government and major corporations are putting in place. Everyone agrees that the economy must keep on working. That is precisely why we cannot forget charities and non-profits.

[They] are part of our economy too, as well as being major contributors to our quality of life… The demand many of them face is already greater given the impact of the recession and now they must prepare for the possibility of an H1N1 outbreak. What if they are not adequately prepared?

We will need them more than ever at a time of crisis. This is no time for blank looks. As a country, we need to figure out how we can help them be prepared for whatever this influenza season brings.

Lauzière’s argument is lucid and important, but he has put the focus largely on continuity of vital services to the disadvantaged. Yes, if H1N1 cripples charities the results could be, according to the Halifax Chronicle Herald’s melodramatic headline, “catastrophic.” But where are the plans to prevent H1N1 transmission among people these charities serve? This, it seems to me, is an issue that should be higher up the priority list of public health authorities. Toronto has a working document, the Toronto pandemic influenza plan: a planning guide for homeless and housing service providers [PDF]. Other Canadian agencies seem to be a little slow on the uptake.

Rather than focusing almost entirely on business continuity, it makes sense to intensify efforts to slow the spread of the virus among disadvantaged and equity seeking groups who make use of charitable services such as food banks and shelters. These are environments in which disease can spread quickly. Sleeping and eating in close quarters, the homeless are even more vulnerable to infection by H1N1, many of them already being immune compromised, poorly nourished, and suffering addiction and chronic illness.

While Marcel Lauzière’s plea for a plan to maintain services should not go unheard, it is also important that our public health authorities act now to slow the spread of H1N1 among the many vulnerable users of charitable services until the vaccine is ready. Or we may find down the road that we have adequately prepared service organizations with no one left to serve.

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Hard-to-reach, hard to research

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From a public health perspective, who are the hard-to-reach and how can we find research articles about them?

I was asked this question by a manager in the Winnipeg Regional Health Authority. He was looking for research specifically on immunization programs for the hard-to-reach as part of the WRHA’s ongoing preparation for the expected H1N1 epidemic. In order to assist my client, how was I to construct a search strategy in PubMed and other databases that would gather disparate materials together without a comprehensive catch-all subject heading?

Finding appropriate literature is just one of many challenges associated with conducting research on hard-to-reach populations. In the first place, how do we identify and sample certain groups of individuals for health research? Undoubtedly some populations are particularly vulnerable and difficult to contact. Other populations may be defined by characteristics such as ethnicity or sexual preference that are not recorded in routinely available data sources. Yet while the need for research on the hard-to-reach is pressing, a comprehensive definition of this population is lacking, and hence it is difficult to get one’s bearings.

Before creating my search strategy, I had to do some research of my own in order to get a handle on exactly the groups that I would be investigating.

Defining the hard-to-reach

What exactly is meant by ‘hard-to-reach’ is a matter of some debate. The term is inconsistently applied. It will sometimes be used to refer to minority groups, such as immigrants, LGBT people, or the homeless; it can be used to refer to ‘hidden populations’, groups of people who do not wish to be found or contacted, such as illegal drug users or gang members; at other times it may refer to broader segments of the population, such as the elderly, or young people, or people with disabilities. In the service context, hard-to-reach often refers to the underserved, certain minority groups, those slipping through the social safety net, and those who are deemed to be ‘service resistant’.

Yet another term used in this context is ‘hidden populations’, meaning those who are hidden from the point of view of research sampling. Hidden populations may also actively seek to conceal their group identity, as for example in the case of sniffers, injection drug users, LGBT people who are in the closet, sexually active teens, etc.

The hard-to-reach are also called the ‘seldom heard’. The use of this term indicates that these are people who do not have a collective voice and are often under-represented in consultation and involvement activities about developing services. ‘Hard-to-reach’ suggests that there is something that prevents their engagement with services. ‘Seldom heard’ emphasizes the responsibility of agencies to reach out to excluded people, ensuring that they have access to social care services and that their voices can be heard.

One of the chief difficulties in defining the hard-to-reach is the unintentional imputation of a homogeneity among distinct groups that does not necessarily exist. Or it may imply that the problem is one within the group itself and not within the approach. Attempts at categorization can have a stigmatizing effect. Hard-to-reach audiences have, with varying degrees of prejudice, been called obstinate, recalcitrant, chronically uninformed, disadvantaged, have-not, illiterate, dysfunctional, and information poor.

Associative and Nonassociative

In addition to these various ways to categorize the hard-to-reach, we can distinguish between ‘associative’ hard-to-reach populations, such as people at risk of AIDS, and ‘nonassociative’ hard-to-reach populations: those whose members do not normally have contact with other members.

Nonassociative populations share two primary characteristics. The first is demographic. There is no effective centralized information about them, and a large proportion of their members do not know each other. The second is that their members share characteristics or attributes that make it important for health and human services to have information about them to inform service planning, policy, and delivery. In addition to these features, they are often low-frequency populations, and they might be subject to stigma of various kinds.

There has been a large amount of research on associative hard-to-reach populations, those whose members are socially networked with each other and form a community (with literally thousands of studies being done on populations at risk of HIV and AIDS, such as injection drug users) – but there have been very few rigorous studies of nonassociative populations, particularly those that are less in the public eye, such as shut-ins.

The central focus of my search strategy was to gather together information precisely on these nonassociative populations. I was looking for groups defined by individual attributes (such as health or social status) where there is often no overriding reason for within-population socializing and where a substantial proportion of population members do not have strong social links with other members and, indeed, might even resist such contact. These hard-to-reach groups must be taken into account in immunization planning. No effective H1N1 prevention strategy can exclude them.

After much effort I decided to include the following in my search strategy:

  1. The homeless, the marginally housed, street people, and sex trade workers
  2. Shelter residents (including women and youth)
  3. Inmates in the correctional system (the incarcerated, parolees, the recently released, and those in half-way homes)
  4. Persons with serious and persistent mental health issues, including dementia or addiction
  5. Housebound persons (cystic fibrosis, arthritis), shut-ins, and the disabled
  6. The linguistically isolated (people with communication impairments, recent immigrants who are not fluent in English or French)
  7. Selected recipients of Family Services and Housing (employment income assistance, government housing, children in care)
  8. Miscellaneous nonassociative groups (transients, the uninsured, the socially isolated)

PubMed Search Strategy

Here, finally, is the strategy I employed for my PubMed search:

(“Immunization”[MAJR] OR vaccinat*[TI] OR immuniz*[TI] OR immunis*[TI] OR “Immunization Programs”[MAJR] OR “Immunization Schedule”[MAJR] OR “Influenza, Human/prevention and control”[MAJR] OR “unvaccinated population”)

AND

(hard-to-reach OR “seldom heard” OR “hidden population” OR “hidden populations” OR homeless OR homelessness OR  “Homeless Persons”[MAJR] OR “Transients and Migrants”[MAJR] OR “Housing”[MAJR] OR “Prostitution”[MAJR] OR “sex trade workers” OR migrant OR vagrants OR “street worker” OR “street workers” OR “street people” OR “street youth” OR “street kids” OR “street children” OR “street involved” OR “unstable housing” OR shelters OR “shelter residents” OR (marginally[TIAB] AND housed[TIAB]) OR under-housed OR “marginalized population” OR “marginalized populations”

OR “Emigrants and Immigrants”[MAJR] OR “Refugees”[MAJR] OR “recent immigrants” OR “recent immigrant” OR “undocumented immigrant” OR “undocumented immigrants” OR “illegal immigrant” OR “illegal immigrants” OR emigres

OR “Vulnerable Populations”[MAJR] OR “Poverty”[MAJR] OR “Poverty Areas”[MH] OR “Social Class”[MH] OR “Socioeconomic Factors”[MH] OR “Urban Population”[MH] OR welfare OR underserved OR “underserved areas” OR “high-risk inner-city” OR socially-at-risk OR “at-risk population” OR “at-risk populations” OR slum OR slums OR ghetto OR ghettos OR favela OR favelas OR “low-socio-economic” OR disadvantaged OR low-income OR impoverished OR uninsured OR underinsured

OR “Prisoners”[MAJR] OR “Prisons”[MAJR] OR incarcerated OR incarceration OR “corrections facility” OR “correctional facilities” OR  “correctional population” OR prisoners OR probation OR probationers OR probationary OR parole OR parolees OR inmates OR “half-way house” OR “half-way houses”

OR “Drug Users”[MAJR] OR “Substance Abuse, Intravenous/psychology”[MAJR] OR “drug users” OR addicts OR addicted OR “drug addicts” OR “substance abuser” OR “substance abusers”

OR deaf[TIAB] OR “Hearing Impaired Persons”[MAJR] OR “Social Isolation”[MAJR] OR “low literacy” OR “language isolated” OR (linguistically[TIAB] AND isolated[TIAB]) OR homebound OR shut-in OR shut-ins OR “disabled persons”[MH]

OR “Mentally Ill Persons”[MAJR] OR “mentally ill”)

References

1. Brackertz N. Who is hard to reach and why? ISR working paper 2007. SISRQ/EL 06.07Institute for Social Research (Australia) [online]. Available from: http://www.sisr.net/publications/0701brackertz.pdf

2. Southern DA, Lewis S, Maxwell CJ, Dunn JR, Noseworthy TW, Corbett G, Thomas K, Ghali WA. Sampling ‘hard-to-reach’ populations in health research: yield from a study targeting Americans living in Canada. BMC Med Res Methodol. 2008 Aug 18;8:57. PubMed PMID: 18710574

3. Stewart M, Makwarimba E, Barnfather A, Letourneau N, Neufeld A. Researching reducing health disparities: mixed-methods approaches. Soc Sci Med. 2008 Mar;66(6):1406-17. Epub 2008 Jan 14. PubMed PMID: 18248867.

4. Thompson S, Phillips D. Reaching and engaging hard-to-reach populations with a high proportion of nonassociative members. Qual Health Res. 2007 Nov;17(9):1292-303. PubMed PMID: 17968045.


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