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1.  Harm reduction services as a point-of-entry to and source of end-of-life care and support for homeless and marginally housed persons who use alcohol and/or illicit drugs: a qualitative analysis 
BMC Public Health  2012;12:312.
Background
Homeless and marginally housed persons who use alcohol and/or illicit drugs often have end-of-life care needs that go unmet due to barriers that they face to accessing end-of-life care services. Many homeless and marginally housed persons who use these substances must therefore rely upon alternate sources of end-of-life care and support. This article explores the role of harm reduction services in end-of-life care services delivery to homeless and marginally housed persons who use alcohol and/or illicit drugs.
Methods
A qualitative case study design was used to explore end-of-life care services delivery to homeless and marginally housed persons in six Canadian cities. A key objective was to explore the role of harm reduction services. 54 health and social services professionals participated in semi-structured qualitative interviews. All participants reported that they provided care and support to this population at end-of-life.
Results
Harm reduction services (e.g., syringe exchange programs, managed alcohol programs, etc.) were identified as a critical point-of-entry to and source of end-of-life care and support for homeless and marginally housed persons who use alcohol and/or illicit drugs. Where possible, harm reduction services facilitated referrals to end-of-life care services for this population. Harm reduction services also provided end-of-life care and support when members of this population were unable or unwilling to access end-of-life care services, thereby improving quality-of-life and increasing self-determination regarding place-of-death.
Conclusions
While partnerships between harm reduction programs and end-of-life care services are identified as one way to improve access, it is noted that more comprehensive harm reduction services might be needed in end-of-life care settings if they are to engage this underserved population.
doi:10.1186/1471-2458-12-312
PMCID: PMC3355019  PMID: 22545586
2.  The Prevalence of Mental Disorders among the Homeless in Western Countries: Systematic Review and Meta-Regression Analysis 
PLoS Medicine  2008;5(12):e225.
Background
There are well over a million homeless people in Western Europe and North America, but reliable estimates of the prevalence of major mental disorders among this population are lacking. We undertook a systematic review of surveys of such disorders in homeless people.
Methods and Findings
We searched for surveys of the prevalence of psychotic illness, major depression, alcohol and drug dependence, and personality disorder that were based on interviews of samples of unselected homeless people. We searched bibliographic indexes, scanned reference lists, and corresponded with authors. We explored potential sources of any observed heterogeneity in the estimates by meta-regression analysis, including geographical region, sample size, and diagnostic method. Twenty-nine eligible surveys provided estimates obtained from 5,684 homeless individuals from seven countries. Substantial heterogeneity was observed in prevalence estimates for mental disorders among the studies (all Cochran's χ2 significant at p < 0.001 and all I2 > 85%). The most common mental disorders were alcohol dependence, which ranged from 8.1% to 58.5%, and drug dependence, which ranged from 4.5% to 54.2%. For psychotic illness, the prevalence ranged from 2.8% to 42.3%, with similar findings for major depression. The prevalence of alcohol dependence was found to have increased over recent decades.
Conclusions
Homeless people in Western countries are substantially more likely to have alcohol and drug dependence than the age-matched general population in those countries, and the prevalences of psychotic illnesses and personality disorders are higher. Models of psychiatric and social care that can best meet these mental health needs requires further investigation.
Seena Fazel and colleagues show, through a systematic review and meta-regression analysis, that homeless people in Western countries have a higher prevalence of alcohol and drug dependence and mental disorders.
Editors' Summary
Background.
In 2007, it was estimated that there were more than 1 million homeless people worldwide. The true magnitude of the problem is difficult to estimate with no internationally agreed definition for homelessness and with the different approaches taken by countries and organizations in counting homeless people.
What we do know is that this is a diverse group of people who have poorer physical and mental health than the general population, leading to premature death. We also know that addressing barriers to health care and behavioral interventions for alcohol and drug dependence and mental health problems in this population can lead to lasting health gains.
Why Was This Study Done?
Health care for the homeless is a major public health challenge. Public policy and health service development depend on reliable estimates of the prevalence (how common a particular characteristic, e.g., a disease, is in a specific group of people or a specific population) of illnesses. By using statistical methods, the researchers aimed to provide a quantitative synthesis of the available evidence on mental health problems in this population and explore reasons for the differences in reported prevalence rates of serious mental disorders between studies, neither which have been done previously.
What Did the Researchers Do and Find?
The researchers systematically searched for surveys that estimated the prevalence of mental disorders in homeless people. Their final sample of 29 studies included a total of 5,684 homeless individuals based in the US, UK, mainland Europe, and Australia. Their main finding was that the prevalences of serious mental disorders were raised compared with expected rates in the general population, and many orders of magnitude higher than age-matched community estimates for psychosis, alcohol dependence, and drug dependence. In addition, the analysis found that alcohol and drug dependence is the most common mental disorder in the homeless (compared to psychosis, depression, and personality disorder). Also, the prevalence estimates of psychosis were found to be as high as those for depression. This latter finding contrasts with community estimates and other “at risk” populations such as prisoners and refugees, where depression is more common. The authors found substantial variation in the prevalence rates for these various disorders, and demonstrated that participation rates were associated with these variations for psychosis, depression, and personality disorder and that studies conducted more recently reported higher rates of alcohol dependence.
What Do These Findings Mean?
This review raises a number of implications for health services for the homeless and research for this population. First, traditional models of service delivery, which focus on those with severe mental illness, may not meet the mental health needs of most homeless people who suffer from alcohol and drug dependence and personality disorder. Second, an integrated approach to treatment may be beneficial and should take into account mental health, alcohol and drug abuse, welfare, and housing needs. Finally, future research should include studies that follow a group over time to help us better understand the risks and pathways into (and out of) homelessness, particularly in non-Western populations where there appears to be a paucity of information.
Additional Information.
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.0050225.
This study is further discussed in a PLoS Medicine Perspective by Helen Herrman
“How can health care systems effectively deal with the major health care needs of homeless people?” is a WHO initiative aimed at tackling the health care needs of homeless people
FEANTSA, the European Federation of National Organizations Working with the Homeless, is an umbrella of not-for-profit organizations that participate in or contribute to the fight against homelessness in Europe
The National Alliance to End Homelessness is a nonpartisan, mission-driven organization committed to preventing and ending homelessness in the US
Information and good practice solutions for the homelessness service sector in Australia can be found on the National Homelessness Information Clearinghouse Web site
Homeless Link is the national membership organization for frontline homelessness agencies in England with a mission to catalyze an end to homelessness
Homeless Man Speaks provides an “on-the-street” perspective
doi:10.1371/journal.pmed.0050225
PMCID: PMC2592351  PMID: 19053169
3.  Dying on the Streets: Homeless Persons’ Concerns and Desires about End of Life Care 
Background
There is little understanding about the experiences and preferences at the end of life (EOL) for people from unique cultural and socioeconomic backgrounds. Homeless individuals are extreme examples of these overlooked populations; they have the greatest risk of death, encounter barriers to health care, and lack the resources and relationships assumed necessary for appropriate EOL care. Exploring their desires and concerns will provide insight for the care of this vulnerable and disenfranchised population, as well as others who are underserved.
Objective
Explore the concerns and desires for EOL care among homeless persons.
Design
Qualitative study utilizing focus groups.
Participants
Fifty-three homeless persons recruited from agencies providing homeless services.
Measurements
In-depth interviews, which were audiotaped and transcribed.
Results
We present 3 domains encompassing 11 themes arising from our investigation, some of which are previously unreported. Homeless persons worried about dying and EOL care; had frequent encounters with death; voiced many unique fears, such as dying anonymously and undiscovered; favored EOL documentation, such as advance directives; and demonstrated ambivalence towards contacting family. They also spoke of barriers to EOL care and shared interventions to improve dying among the very poor and estranged.
Conclusions
Homeless persons have significant personal experience and feelings about death, dying, and EOL care, much of which is different from those previously described in the EOL literature about other populations. These findings have implications not only for homeless persons, but for others who are poor and disenfranchised.
doi:10.1007/s11606-006-0046-7
PMCID: PMC1829423  PMID: 17372789
bioethics; homelessness; end-of-life care; focus groups; poverty
4.  Dying on the Streets: Homeless Persons’ Concerns and Desires about End of Life Care 
Background
There is little understanding about the experiences and preferences at the end of life (EOL) for people from unique cultural and socioeconomic backgrounds. Homeless individuals are extreme examples of these overlooked populations; they have the greatest risk of death, encounter barriers to health care, and lack the resources and relationships assumed necessary for appropriate EOL care. Exploring their desires and concerns will provide insight for the care of this vulnerable and disenfranchised population, as well as others who are underserved.
Objective
Explore the concerns and desires for EOL care among homeless persons.
Design
Qualitative study utilizing focus groups.
Participants
Fifty-three homeless persons recruited from agencies providing homeless services.
Measurements
In-depth interviews, which were audiotaped and transcribed.
Results
We present 3 domains encompassing 11 themes arising from our investigation, some of which are previously unreported. Homeless persons worried about dying and EOL care; had frequent encounters with death; voiced many unique fears, such as dying anonymously and undiscovered; favored EOL documentation, such as advance directives; and demonstrated ambivalence towards contacting family. They also spoke of barriers to EOL care and shared interventions to improve dying among the very poor and estranged.
Conclusions
Homeless persons have significant personal experience and feelings about death, dying, and EOL care, much of which is different from those previously described in the EOL literature about other populations. These findings have implications not only for homeless persons, but for others who are poor and disenfranchised.
doi:10.1007/s11606-006-0046-7
PMCID: PMC1829423  PMID: 17372789
bioethics; homelessness; end-of-life care; focus groups; poverty
5.  Experiences With and Attitudes Toward Death and Dying Among Homeless Persons 
Background
Homeless persons face many barriers to health care, have few resources, and experience high death rates. They live lives of disenfranchisement and neglect. Few studies have explored their experiences and attitudes toward death and dying. Unfortunately, studies done in other populations may not apply to homeless persons. Exploring these experiences and attitudes may provide insight into life, health care, and end-of-life (EOL) concerns of this population.
Objective
To explore the experiences and attitudes toward death and dying among homeless persons.
Design
Qualitative study utilizing focus groups.
Participants
Fifty-three homeless persons recruited from homeless service agencies.
Measurements
In-depth interviews, which were audiotaped and transcribed.
Results
We present seven themes, some of which are previously unreported. Homeless persons described many significant experiences with death and dying, and many participants suffered losses while very young. These encounters influenced participants’ attitudes toward risks and risky behavior: e.g., for some, these experiences provided justification for high-risk behaviors and influenced their behaviors while living on the streets. For others, they may be associated with their homelessness. Finally, these experiences informed their attitudes toward death and dying as well as EOL care; homeless persons believe that care will be poor at the EOL.
Conclusions
Findings from this study have implications for addressing social services, health promotion, prevention, and EOL care for homeless persons, as well as for others who are poor and disenfranchised.
doi:10.1007/s11606-006-0045-8
PMCID: PMC1829422  PMID: 17372788
homelessness; death; end-of-life care; focus groups; poverty
6.  Experiences With and Attitudes Toward Death and Dying Among Homeless Persons 
Background
Homeless persons face many barriers to health care, have few resources, and experience high death rates. They live lives of disenfranchisement and neglect. Few studies have explored their experiences and attitudes toward death and dying. Unfortunately, studies done in other populations may not apply to homeless persons. Exploring these experiences and attitudes may provide insight into life, health care, and end-of-life (EOL) concerns of this population.
Objective
To explore the experiences and attitudes toward death and dying among homeless persons.
Design
Qualitative study utilizing focus groups.
Participants
Fifty-three homeless persons recruited from homeless service agencies.
Measurements
In-depth interviews, which were audiotaped and transcribed.
Results
We present seven themes, some of which are previously unreported. Homeless persons described many significant experiences with death and dying, and many participants suffered losses while very young. These encounters influenced participants’ attitudes toward risks and risky behavior: e.g., for some, these experiences provided justification for high-risk behaviors and influenced their behaviors while living on the streets. For others, they may be associated with their homelessness. Finally, these experiences informed their attitudes toward death and dying as well as EOL care; homeless persons believe that care will be poor at the EOL.
Conclusions
Findings from this study have implications for addressing social services, health promotion, prevention, and EOL care for homeless persons, as well as for others who are poor and disenfranchised.
doi:10.1007/s11606-006-0045-8
PMCID: PMC1829422  PMID: 17372788
homelessness; death; end-of-life care; focus groups; poverty
7.  Challenges to immunization: the experiences of homeless youth 
BMC Public Health  2012;12:338.
Background
Homelessness is a critical social issue, both a product of, and contributing to, poor mental and physical health. Over 150,000 young Canadians live on the streets. Homeless youth experience a high incidence of infectious diseases, many of which are vaccine preventable. Early departure from school and limited access to public health services makes them a particularly vulnerable high-risk group. This study explores challenges to obtaining essential vaccines experienced by homeless youth.
Methods
A qualitative research study to explore knowledge, attitudes, beliefs, and experiences surrounding immunization of hard-to-reach homeless youth was designed. Participants were recruited for focus groups from Phoenix House and Shelter, a non-profit, community-based organization assisting homeless youth in Halifax, Nova Scotia, Canada. An experienced facilitator guided the recorded discussions. Transcripts of audiotapes were analyzed using a constant comparative method until data revealed a set of exemplars and themes that best captured participants’ knowledge, attitudes, beliefs and experiences surrounding immunization and infectious diseases.
Results
Important themes emerged from our analysis. Considerable variability in knowledge about immunization and vaccine preventable diseases was found. The homeless youth in the study had limited awareness of meningitis in contrast to a greater knowledge about sexually transmitted infections and influenza, gained during the H1N1/09 public health campaign. They recognized their poverty as a risk for contracting infectious diseases, along with their inability to always employ known strategies to prevent infectious diseases, due to circumstances. They showed considerable insight into the detrimental effects of poor hygiene, sleeping locations and risk behaviour. Interviewed homeless youth regarded themselves as good compliers of health professional advice and offered valuable suggestions to improve immunization in their population.
Conclusions
To provide effective public health interventions, it is necessary to consider the knowledge, attitudes, beliefs, and experiences of hard to reach, high risk groups. Our study shows that homeless youth are interested and capable in discussing immunization. Active targeting of homeless youth for public health immunization programs is needed. Working collaboratively with non-profit organizations that assist homeless youth provides an opportunity to increase their knowledge of infectious risks and to improve immunization strategies in this vulnerable group.
doi:10.1186/1471-2458-12-338
PMCID: PMC3390266  PMID: 22568937
Homeless youth; Hard to reach population; Vaccines; Immunization programs; Infectious diseases; Invasive meningococcal disease
8.  Unique health care utilization patterns in a homeless population in Ghent 
Background
Existing studies concerning the health care use of homeless people describe higher utilisation rates for hospital-based care and emergency care, and lower rates for primary care by homeless people compared to the general population. Homeless people are importantly hindered and/or steered in their health care use by barriers directly related to the organisation of care. Our goal is to describe the accessibility of primary health care services, secondary care and emergency care for homeless people living in an area with a universal primary health care system and active guidance towards this unique system.
Methods
Observational, cross-sectional study design. Data from the Belgian National health survey were merged with comparable data collected by means of a face-to-face interview from homeless people in Ghent. 122 homeless people who made use of homeless centres and shelters in Ghent were interviewed using a reduced version of the Belgian National Health survey over a period of 5 months. 2-dimensional crosstabs were built in order to study the bivariate relationship between health care use (primary health care, secondary and emergency care) and being homeless. To determine the independent association, a logistic model was constructed adjusting for age and sex.
Results and Discussion
Homeless people have a higher likelihood to consult a GP than the non-homeless people in Ghent, even after adjusting for age and sex. The same trend is demonstrated for secondary and emergency care.
Conclusions
Homeless people in Ghent do find the way to primary health care and make use of it. It seems that the universal primary health care system in Ghent with an active guidance by social workers contributes to easier GP access.
doi:10.1186/1472-6963-10-242
PMCID: PMC2933678  PMID: 20723222
9.  Service provision and barriers to care for homeless people with mental health problems across 14 European capital cities 
Background
Mental health problems are disproportionately higher amongst homeless people. Many barriers exist for homeless people with mental health problems in accessing treatment yet little research has been done on service provision and quality of care for this group. The aim of this paper is to assess current service provision and identify barriers to care for homeless people with mental health problems in 14 European capital cities.
Method
Two methods of data collection were employed; (i) In two highly deprived areas in each of the 14 European capital cities, homeless-specific services providing mental health, social care or general health services were assessed. Data were obtained on service characteristics, staff and programmes provided. (ii) Semi-structured interviews were conducted in each area with experts in mental health care provision for homeless people in order to determine the barriers to care and ways to overcome them.
Results
Across the 14 capital cities, 111 homeless-specific services were assessed. Input from professionally qualified mental health staff was reported as low, as were levels of active outreach and case finding. Out-of-hours service provision appears inadequate and high levels of service exclusion criteria were evident. Prejudice in the services towards homeless people, a lack of co-ordination amongst services, and the difficulties homeless people face in obtaining health insurance were identified as major barriers to service provision.
Conclusions
While there is variability in service provision across European capital cities, the reported barriers to service accessibility are common. Homeless-specific services are more responsive to the initial needs of homeless people with mental health problems, while generic services tend to be more conducive to long term care. Further research is needed to determine the effectiveness of different service delivery models, including the most effective coordination of homeless specific and generic services.
doi:10.1186/1472-6963-12-222
PMCID: PMC3441802  PMID: 22838503
10.  Pathways into homelessness: recently homeless adults problems and service use before and after becoming homeless in Amsterdam 
BMC Public Health  2009;9:3.
Background
To improve homelessness prevention practice, we met with recently homeless adults, to explore their pathways into homelessness, problems and service use, before and after becoming homeless.
Methods
Recently homeless adults (last housing lost up to two years ago and legally staying in the Netherlands) were sampled in the streets, day centres and overnight shelters in Amsterdam. In April and May 2004, students conducted interviews and collected data on demographics, self reported pathways into homelessness, social and medical problems, and service use, before and after becoming homeless.
Results
among 120 recently homeless adults, (male 88%, Dutch 50%, average age 38 years, mean duration of homelessness 23 weeks), the main reported pathways into homelessness were evictions 38%, relationship problems 35%, prison 6% and other reasons 22%. Compared to the relationship group, the eviction group was slightly older (average age 39.6 versus 35.5 years; p = 0.08), belonged more often to a migrant group (p = 0.025), and reported more living single (p < 0,001), more financial debts (p = 0.009), more alcohol problems (p = 0.048) and more contacts with debt control services (p = 0.009). The relationship group reported more domestic conflicts (p < 0.001) and tended to report more drug (cocaine) problems. Before homelessness, in the total group, contacts with any social service were 38% and with any medical service 27%. Despite these contacts they did not keep their house. During homelessness only contacts with social work and benefit agencies increased, contacts with medical services remained low.
Conclusion
the recently homeless fit the overall profile of the homeless population in Amsterdam: single (Dutch) men, around 40 years, with a mix of financial debts, addiction, mental and/or physical health problems. Contacts with services were fragmented and did not prevent homelessness. For homelessness prevention, systematic and outreach social medical care before and during homelessness should be provided.
doi:10.1186/1471-2458-9-3
PMCID: PMC2628651  PMID: 19128448
11.  A strengths based method for homeless youth: Effectiveness and fidelity of Houvast 
BMC Public Health  2013;13:359.
Background
While homelessness among youth is a serious problem, there is little information about evidence-based interventions for homeless youth. In cooperation with professionals and youths, Wolf (2012) developed Houvast (Dutch for ‘grip’): a strengths based method grounded in scientific and practice evidence. The main aim of Houvast is to improve the quality of life of homeless youths by focusing on their strengths, thus stimulating their capacity for autonomy and self-reliance.
Method/Design
The effectiveness and fidelity of Houvast will be tested in ten Dutch services for homeless youth which are randomly allocated to an intervention group (n = 5), or a control group which provides care as usual (n = 5). Measurements of both objective and subjective quality of life and secondary outcomes (mental and physical health, substance use, coping, resilience, psychological needs, care needs, working relationship with the professional and attainment of personal goals) will be conducted among homeless youths (n = 251). Youths in both groups will be interviewed by means of a structured interview at baseline, at time of ending care or after having received care for six months (T1) and at nine months after baseline (T2). Model fidelity will be tested around T1.
Discussion
This study is unique as it includes a large number of homeless youths who are followed for a period of nine months, and because it focuses on a strengths based approach. If the Houvast method proves to be effective in improving quality of life it will be the first evidence-based intervention for homeless youth.
Trail registration
Netherlands Trail Register (NTR):NTR3254
doi:10.1186/1471-2458-13-359
PMCID: PMC3640974  PMID: 23594410
Homeless youth; Strengths based method; Quality of life; Mental health; Substance use; Fidelity; Quasi-experimental design
12.  Health-Seeking Challenges Among Homeless Youth 
Nursing research  2010;59(3):212-218.
Background
Approximately 1.5 to 2 million homeless young persons live on the streets in the United States. With the current economic situation, research is needed on quality of services geared toward homeless young adults.
Objectives
The objective of this study was to explore homeless young adults' perspectives on barriers and facilitators of health-care-seeking behavior and their perspectives on improving existing programs for homeless persons.
Methods
This article is a descriptive qualitative study using focus groups, with a purposeful sample of 24 homeless drug-using young adults.
Results
Identified themes were failing access to care based on perceived structural barriers (limited clinic sites, limited hours of operation, priority health conditions, and long wait times) and social barriers (perception of discrimination by uncaring professionals, law enforcement, and society in general).
Discussion
Results provide insight into programmatic and agency resources that facilitate health-seeking behaviors among homeless young adults and include implications for more research with providers of homeless health and social services.
doi:10.1097/NNR.0b013e3181d1a8a9
PMCID: PMC2949422  PMID: 20404776
health care; health-seeking behaviors; homeless; young adults
13.  A cross-sectional observational study of unmet health needs among homeless and vulnerably housed adults in three Canadian cities 
BMC Public Health  2013;13:577.
Background
Homeless persons experience a high burden of health problems; yet, they face significant barriers in accessing health care. Less is known about unmet needs for care among vulnerably housed persons who live in poor-quality or temporary housing and are at high risk of becoming homeless. The objectives of this study were to examine the prevalence of and factors associated with unmet needs for health care in a population-based sample of homeless and vulnerably housed adults in three major cities within a universal health insurance system.
Methods
Participants were recruited at shelters, meal programs, community health centers, drop-in centers, rooming houses, and single room occupancy hotels in Vancouver, Toronto, and Ottawa, Canada, throughout 2009. Baseline interviews elicited demographic characteristics, health status, and barriers to health care. Logistic regression was used to identify factors associated with self-reported unmet needs for health care in the past 12 months.
Results
Of the 1,181 participants included in the analysis, 445 (37%) reported unmet needs. In adjusted analyses, factors associated with a greater odds of reporting unmet needs were having employment in the past 12 months (AOR = 1.40, 95% CI = 1.03–1.91) and having ≥3 chronic health conditions (AOR = 2.17, 95% CI = 1.24–3.79). Having higher health-related quality of life (AOR = 0.21, 95% CI = 0.09–0.53), improved mental (AOR = 0.97, 95% CI = 0.96–0.98) or physical health (AOR = 0.98, 95% CI = 0.96–0.99), and having a primary care provider (AOR = 0.63, 95% CI = 0.46–0.85) decreased the odds of reporting unmet needs.
Conclusions
Homeless and vulnerably housed adults have a similar likelihood of experiencing unmet health care needs. Strategies to improve access to primary care and reduce barriers to accessing care in these populations are needed.
doi:10.1186/1471-2458-13-577
PMCID: PMC3691921  PMID: 23764199
Access to care; Homelessness; Housing; Primary care; Public health policy
14.  Social Context of Work Injury Among Undocumented Day Laborers in San Francisco 
OBJECTIVE
To identify ways in which undocumented day laborers' social context affects their risk for occupational injury, and to characterize the ways in which these workers' social context influences their experience of disability.
DESIGN
Qualitative study employing ethnographic techniques of participant-observation, supplemented by semistructured in-depth interviews.
SETTINGS
Street corners in San Francisco's Mission District, a homeless shelter, and a nonprofit day labor hiring hall.
PARTICIPANTS
Thirty-eight Mexican and Central American male day laborers, 11 of whom had been injured.
PRIMARY THEMES
Anxiety over the potential for work injury is omnipresent for day laborers. They work in dangerous settings, and a variety of factors such as lack of training, inadequate safety equipment, and economic pressures further increase their risk for work injury. The day laborers are isolated from family and community support, living in a local context of homelessness, competition, and violence. Injuries tend to have severe emotional, social, and economic ramifications. Day laborers frequently perceive injury as a personal failure that threatens their masculinity and their status as patriarch of the family. Their shame and disappointment at failing to fulfill culturally defined masculine responsibilities leads to intense personal stress and can break family bonds. Despite the high incidence of work injuries and prevalence of work-related health conditions, day laborers are frequently reluctant to use health services due to anxiety regarding immigration status, communication barriers, and economic pressure.
IMPLICATIONS
On the basis of these ethnographic data, we recommend strategies to improve ambulatory care services to day laborers in 3 areas: structural changes in ambulatory care delivery, clinical interactions with individual day laborers, and policymaking around immigration and health care issues.
doi:10.1046/j.1525-1497.2002.10501.x
PMCID: PMC1495019  PMID: 11929509
undocumented immigration; occupational injury; social context of health
15.  Homeless People’s Perceptions of Welcomeness and Unwelcomeness in Healthcare Encounters 
Journal of General Internal Medicine  2007;22(7):1011-1017.
Background
Homeless people face many barriers to obtaining health care, and their attitudes toward seeking health care services may be shaped in part by previous encounters with health care providers.
Objective
To examine how homeless persons experienced “welcomeness” and “unwelcomeness” in past encounters with health care providers and to characterize their perceptions of these interactions.
Design
Qualitative content analysis of 17 in-depth interviews.
Participants
Seventeen homeless men and women, aged 29–62 years, residing at 5 shelters in Toronto, Canada.
Approach
Interpretive content analysis was performed using iterative stages of inductive coding. Interview transcripts were analyzed using Buber’s philosophical conceptualization of ways of relating as “I–It” (the way persons relate to objects) and “I–You” (the way persons relate to dynamic beings).
Results
Most participants perceived their experiences of unwelcomeness as acts of discrimination. Homelessness and low social class were most commonly cited as the perceived basis for discriminatory treatment. Many participants reported intense emotional responses to unwelcoming experiences, which negatively influenced their desire to seek health care in the future. Participants’ descriptions of unwelcoming health care encounters were consistent with “I–It” ways of relating in that they felt dehumanized, not listened to, or disempowered. Welcoming experiences were consistent with “I–You” ways of relating, in that patients felt valued as a person, truly listened to, or empowered.
Conclusions
Homeless people’s perceptions of welcomeness and unwelcomeness are an important aspect of their encounters with health care providers. Buber’s “I–It” and “I–You” concepts are potentially useful aids to health care providers who wish to understand how welcoming and unwelcoming interactions are fostered.
doi:10.1007/s11606-007-0183-7
PMCID: PMC2219712  PMID: 17415619
homeless persons; professional-patient relations; trust; welcomeness; unwelcomeness
16.  Quality of life themes in Canadian adults and street youth who are homeless or hard-to-house: A multi-site focus group study 
Background
The aim of this study was to identify what is most important to the quality of life (QoL) of those who experience homelessness by directly soliciting the views of homeless and hard-to-house Canadians themselves. These individuals live within a unique social context that differs considerably from that of the general population. To understand the life areas that are most important to them, it is critical to have direct input from target populations of homeless and hard-to-house persons.
Methods
Focus groups were conducted with 140 individuals aged 15 to 73 years who were homeless or hard-to-house to explore the circumstances in which they were living and to capture what they find to be important and relevant domains of QoL. Participants were recruited in Toronto, Ottawa, Montreal, and Vancouver. Content analysis was used to analyze the data.
Results
Six major content themes emerged: Health/health care; Living conditions; Financial situation; Employment situation; Relationships; and Recreational and leisure activities. These themes were linked to broader concepts that included having choices, stability, respect, and the same rights as other members of society.
Conclusions
These findings not only aid our understanding of QoL in this group, but may be used to develop measures that capture QoL in this population and help programs and policies become more effective in improving the life situation for persons who are homeless and hard-to-house.
Quality of life themes in Canadian adults and street youth who are homeless or hard-to-house: A multi-site focus group study.
doi:10.1186/1477-7525-10-93
PMCID: PMC3462681  PMID: 22894551
Homeless; Quality of life; Hard-to-house
17.  Mobile Phone Technology: A New Paradigm for the Prevention, Treatment, and Research of the Non-sheltered “Street” Homeless? 
Individuals experiencing homelessness have disproportionately high rates of health problems. Those who perceive themselves as having greater access to their social support networks have better physical and mental health outcomes as well as lower rates of victimization. Mobile phones offer a connection to others without the physical constraints of landlines and, therefore, may make communication (e.g., access to one’s social support networks) more feasible for homeless individuals. This, in turn, could lead toward better health outcomes. This exploratory study examined mobile phone possession and use among a sample of 100 homeless men and women who do not use the shelter system in Philadelphia, PA. Interviews were comprised of the Homeless Supplement to the Diagnostic Interview Schedule, a technology module created for this investigation, and the substance use and psychiatric sections of the Addiction Severity Index. Almost half (44%) of the sample had a mobile phone. In the past 30 days, 100% of those with mobile phones placed or received a call, over half (61%) sent or received a text message, and one fifth (20%) accessed the Internet via their mobile phone. Participants possessed and used mobile phones to increase their sense of safety, responsibility (employment, stable housing, personal business, and sobriety or “clean time”), and social connectedness. Mobile phones could potentially be used by public health/health care providers to disseminate information to the street homeless, to enhance communication between the street homeless and providers, and to increase access for the street homeless to prevention, intervention, and aftercare services. Finally, this technology could also be used by researchers to collect data with this transient population.
doi:10.1007/s11524-010-9456-2
PMCID: PMC2871091  PMID: 20397058
Homeless; Technology; Cell phone; Mobile phone; Social support; Prevention; Treatment; Intervention; Aftercare; Methods
18.  “Because Somebody Cared about Me. That's How It Changed Things”: Homeless, Chronically Ill Patients’ Perspectives on Case Management 
PLoS ONE  2012;7(9):e45980.
Background
Case management programs for chronically ill, homeless people improve health and resource utilization by linking patients with case managers focused on improving management of medical and psychosocial problems. Little is known about participants’ perspectives on case management interventions.
Methods
This qualitative study used in-depth, one-on-one interviews to understand the impact of a case management program from the perspective of participants. A standardized interview guide with open-ended questions explored experiences with the case management program and feelings about readiness to leave the program.
Results
Four recurrent themes emerged: (1) Participants described profound social isolation prior to case management program enrollment; (2) Participants perceived that caring personal relationships with case managers were key to the program; (3) Participants valued assistance with navigating medical and social systems; and (4) Participants perceived that their health improved through both the interpersonal and the practical aspects of case management.
Conclusions
Chronically ill, homeless people enrolled in a case management program perceived that social support from case managers resulted in improved health. Programs for this population should consider explicitly including comprehensive social support interventions. Further research on case management should explore the impact of different types of social support on outcomes for homeless chronically ill patients.
doi:10.1371/journal.pone.0045980
PMCID: PMC3461032  PMID: 23029350
19.  Experiences of Living and Dying With COPD 
Executive Summary
In July 2010, the Medical Advisory Secretariat (MAS) began work on a Chronic Obstructive Pulmonary Disease (COPD) evidentiary framework, an evidence-based review of the literature surrounding treatment strategies for patients with COPD. This project emerged from a request by the Health System Strategy Division of the Ministry of Health and Long-Term Care that MAS provide them with an evidentiary platform on the effectiveness and cost-effectiveness of COPD interventions.
After an initial review of health technology assessments and systematic reviews of COPD literature, and consultation with experts, MAS identified the following topics for analysis: vaccinations (influenza and pneumococcal), smoking cessation, multidisciplinary care, pulmonary rehabilitation, long-term oxygen therapy, noninvasive positive pressure ventilation for acute and chronic respiratory failure, hospital-at-home for acute exacerbations of COPD, and telehealth (including telemonitoring and telephone support). Evidence-based analyses were prepared for each of these topics. For each technology, an economic analysis was also completed where appropriate. In addition, a review of the qualitative literature on patient, caregiver, and provider perspectives on living and dying with COPD was conducted, as were reviews of the qualitative literature on each of the technologies included in these analyses.
The Chronic Obstructive Pulmonary Disease Mega-Analysis series is made up of the following reports, which can be publicly accessed at the MAS website at: http://www.hqontario.ca/en/mas/mas_ohtas_mn.html.
Chronic Obstructive Pulmonary Disease (COPD) Evidentiary Framework
Influenza and Pneumococcal Vaccinations for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Smoking Cessation for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Community-Based Multidisciplinary Care for Patients With Stable Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Pulmonary Rehabilitation for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Long-Term Oxygen Therapy for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Noninvasive Positive Pressure Ventilation for Acute Respiratory Failure Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Noninvasive Positive Pressure Ventilation for Chronic Respiratory Failure Patients With Stable Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Hospital-at-Home Programs for Patients With Acute Exacerbations of Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Home Telehealth for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Cost-Effectiveness of Interventions for Chronic Obstructive Pulmonary Disease Using an Ontario Policy Model
Experiences of Living and Dying With COPD: A Systematic Review and Synthesis of the Qualitative Empirical Literature
For more information on the qualitative review, please contact Mita Giacomini at: http://fhs.mcmaster.ca/ceb/faculty_member_giacomini.htm.
For more information on the economic analysis, please visit the PATH website: http://www.path-hta.ca/About-Us/Contact-Us.aspx.
The Toronto Health Economics and Technology Assessment (THETA) collaborative has produced an associated report on patient preference for mechanical ventilation. For more information, please visit the THETA website: http://theta.utoronto.ca/static/contact.
Objective of Analysis
The objective of this analysis was to review empirical qualitative research on the experiences of patients with chronic obstructive pulmonary disease (COPD), informal caregivers (“carers”), and health care providers—from the point of diagnosis, through daily living and exacerbation episodes, to the end of life.
Clinical Need and Target Population
Qualitative empirical studies (from social sciences, clinical, and related fields) can offer important information about how patients experience their condition. This exploration of the qualitative literature offers insights into patients’ perspectives on COPD, their needs, and how interventions might affect their experiences. The experiences of caregivers are also explored.
Research Question
What do patients with COPD, their informal caregivers (“carers”), and health care providers experience over the course of COPD?
Research Methods
Literature Search
Search Strategy
Literature searches for studies published from January 1, 2000, to November 2010 were performed on November 29, 2010, using OVID MEDLINE; on November 26, 2010, using ISI Web of Science; and on November 28, 2010, using EBSCO Cumulative Index to Nursing and Allied Health Literature (CINAHL). Titles and abstracts were reviewed by a single reviewer and, for those studies meeting the eligibility criteria, full-text articles were obtained. One additional report, highly relevant to the synthesis, appeared in early 2011 during the drafting of this analysis and was included post hoc.
Inclusion Criteria
English-language full reports
studies published between January 1, 2000, and November 2010
primary qualitative empirical research (using any descriptive or interpretive qualitative methodology, including the qualitative component of mixed-methods studies) and secondary syntheses of primary qualitative empirical research
studies addressing any aspect of the experiences of living or dying with COPD from the perspective of persons at risk, patients, health care providers, or informal carers; studies addressing multiple conditions were included if COPD was addressed explicitly
Exclusion Criteria
studies addressing topics other than the experiences of living or dying with COPD from the perspective of persons at risk, patients, health care providers, or informal carers
studies labelled “qualitative” but not using a qualitative descriptive or interpretive methodology (e.g., case studies, experiments, or observational analysis using qualitative categorical variables)
quantitative research (i.e., using statistical hypothesis testing, using primarily quantitative data or analyses, or expressing results in quantitative or statistical terms)
studies that did not pose an empirical research objective or question, or involve the primary or secondary analysis of empirical data
Outcomes of Interest
qualitative descriptions and interpretations (narrative or theoretical) of personal and social experiences of COPD
Summary of Findings
Experiences at Diagnosis
Patients typically seek initial treatment for an acute episode rather than for chronic early symptoms of COPD.
Many patients initially misunderstand terms such as COPD, chronic obstructive pulmonary disease, or exacerbation.
Patients may not realize that COPD is incurable and fatal; some physicians themselves do not consider early COPD to be a fatal disease.
Smokers may not readily understand or agree with the idea that smoking caused or worsens their COPD. Those who believe there is a causal link may feel regret or shame.
Experiences of Living Day to Day
COPD patients experience alternating good days and bad days. A roller-coaster pattern of ups and downs becomes apparent, and COPD becomes a way of life.
Patients use many means (social, psychological, medical, organizational) to control what they can, and to cope with what they cannot. Economic hardship, comorbidities, language barriers, and low health literacy can make coping more difficult.
Increasing vulnerability and unpredictable setbacks make patients dependent on others for practical assistance, but functional limitations, institutional living or self-consciousness can isolate patients from the people they need.
For smokers, medical advice to quit can conflict with increased desire to smoke as a coping strategy.
Many of the factors that isolate COPD patients from social contact also isolate them from health care.
Experiences of Exacerbations
Patients may not always attribute repeated exacerbations to advancing disease, instead seeing them as temporary setbacks caused by activities, environmental factors, faltering self-management, or infection.
Lack of confidence in community-based services leads some patients to seek hospital admission, but patients also feel vulnerable when hospitalized. They may feel dependent on others for care or traumatized by hospital care routines.
Upon hospital discharge following an exacerbation, patients may face new levels of uncertainty about their illness, prognosis, care providers, and supports.
Experiences of the End of Life
Patients tend to be poorly informed about the long-term prognosis of COPD and what to expect toward the end of life; this lack of understanding impairs quality of life as the disease progresses.
As the end of life approaches, COPD patients face the usual challenges of daily living, but in a context of increasing exacerbations and deepening dependency. Activities and mobility decrease, and life may become confined.
Some clinicians have difficulty identifying the beginning of “the end of life,” given the unpredictable course of COPD. Long-term physician-patient relationships, familiarity and understanding, trust, good communication skills, sensitivity, and secure discussion settings can help facilitate end-of-life discussions.
Divergent meanings and goals of palliative care in COPD lead to confusion about whether such services are the responsibility of home care, primary care, specialty care, or even critical care. Palliative end-of-life care may not be anticipated prior to referral for such care. A palliative care referral can convey the demoralizing message that providers have “given up.”
Experiences of Carers
Carers’ challenges often echo patients’ challenges, and include anxiety, uncertainty about the future, helplessness, powerlessness, depression, difficulties maintaining employment, loss of mobility and freedoms, strained relationships, and growing social isolation.
Carers feel pressured by their many roles, struggling to maintain patience when they feel overwhelmed, and often feeling guilty about not doing enough.
Carers often face their own health problems and may have difficulty sustaining employment.
Synthesis: A Disease Trajectory Reflecting Patient Experiences
The flux of needs in COPD calls for service continuity and flexibility to allow both health care providers and patients to respond to the unpredictable yet increasing demands of the disease over time.
PMCID: PMC3384365  PMID: 23074423
20.  Reinterpreting Ethnic Patterns among White and African American Men Who Inject Heroin: A Social Science of Medicine Approach 
PLoS Medicine  2006;3(10):e452.
Background
Street-based heroin injectors represent an especially vulnerable population group subject to negative health outcomes and social stigma. Effective clinical treatment and public health intervention for this population requires an understanding of their cultural environment and experiences. Social science theory and methods offer tools to understand the reasons for economic and ethnic disparities that cause individual suffering and stress at the institutional level.
Methods and Findings
We used a cross-methodological approach that incorporated quantitative, clinical, and ethnographic data collected by two contemporaneous long-term San Francisco studies, one epidemiological and one ethnographic, to explore the impact of ethnicity on street-based heroin-injecting men 45 years of age or older who were self-identified as either African American or white. We triangulated our ethnographic findings by statistically examining 14 relevant epidemiological variables stratified by median age and ethnicity. We observed significant differences in social practices between self-identified African Americans and whites in our ethnographic social network sample with respect to patterns of (1) drug consumption; (2) income generation; (3) social and institutional relationships; and (4) personal health and hygiene. African Americans and whites tended to experience different structural relationships to their shared condition of addiction and poverty. Specifically, this generation of San Francisco injectors grew up as the children of poor rural to urban immigrants in an era (the late 1960s through 1970s) when industrial jobs disappeared and heroin became fashionable. This was also when violent segregated inner city youth gangs proliferated and the federal government initiated its “War on Drugs.” African Americans had earlier and more negative contact with law enforcement but maintained long-term ties with their extended families. Most of the whites were expelled from their families when they began engaging in drug-related crime. These historical-structural conditions generated distinct presentations of self. Whites styled themselves as outcasts, defeated by addiction. They professed to be injecting heroin to stave off “dopesickness” rather than to seek pleasure. African Americans, in contrast, cast their physical addiction as an oppositional pursuit of autonomy and pleasure. They considered themselves to be professional outlaws and rejected any appearance of abjection. Many, but not all, of these ethnographic findings were corroborated by our epidemiological data, highlighting the variability of behaviors within ethnic categories.
Conclusions
Bringing quantitative and qualitative methodologies and perspectives into a collaborative dialog among cross-disciplinary researchers highlights the fact that clinical practice must go beyond simple racial or cultural categories. A clinical social science approach provides insights into how sociocultural processes are mediated by historically rooted and institutionally enforced power relations. Recognizing the logical underpinnings of ethnically specific behavioral patterns of street-based injectors is the foundation for cultural competence and for successful clinical relationships. It reduces the risk of suboptimal medical care for an exceptionally vulnerable and challenging patient population. Social science approaches can also help explain larger-scale patterns of health disparities; inform new approaches to structural and institutional-level public health initiatives; and enable clinicians to take more leadership in changing public policies that have negative health consequences.
Bourgois and colleagues found that the African American and white men in their study had a different pattern of drug use and risk behaviors, adopted different strategies for survival, and had different personal histories.
Editors' Summary
Background.
There are stark differences in the health of different ethnic groups in America. For example, the life expectancy for white men is 75.4 years, but it is only 69.2 years for African-American men. The reasons behind these disparities are unclear, though there are several possible explanations. Perhaps, for example, different ethnic groups are treated differently by health professionals (with some groups receiving poorer quality health care). Or maybe the health disparities are due to differences across ethnic groups in income level (we know that richer people are healthier). These disparities are likely to persist unless we gain a better understanding of how they arise.
Why Was This Study Done?
The researchers wanted to study the health of a very vulnerable community of people: heroin users living on the streets in the San Francisco Bay Area. The health status of this community is extremely poor, and its members are highly stigmatized—including by health professionals themselves. The researchers wanted to know whether African American men and white men who live on the streets have a different pattern of drug use, whether they adopt varying strategies for survival, and whether they have different personal histories. Knowledge of such differences would help the health community to provide more tailored and culturally appropriate interventions. Physicians, nurses, and social workers often treat street-based drug users, especially in emergency rooms and free clinics. These health professionals regularly report that their interactions with street-based drug users are frustrating and confrontational. The researchers hoped that their study would help these professionals to have a better understanding of the cultural backgrounds and motivations of their drug-using patients.
What Did the Researchers Do and Find?
Over the course of six years, the researchers directly observed about 70 men living on the streets who injected heroin as they went about their usual lives (this type of research is called “participant observation”). The researchers specifically looked to see whether there were differences between the white and African American men. All the men gave their consent to be studied in this way and to be photographed. The researchers also studied a database of interviews with almost 7,000 injection drug users conducted over five years, drawing out the data on differences between white and African men. The researchers found that the white men were more likely to supplement their heroin use with inexpensive fortified wine, while African American men were more likely to supplement heroin with crack. Most of the white men were expelled from their families when they began engaging in drug-related crime, and these men tended to consider themselves as destitute outcasts. African American men had earlier and more negative contact with law enforcement but maintained long-term ties with their extended families, and these men tended to consider themselves as professional outlaws. The white men persevered less in attempting to find a vein in which to inject heroin, and so were more likely to inject the drug directly under the skin—this meant that they were more likely to suffer from skin abscesses. The white men generated most of their income from panhandling (begging for money), while the African American men generated most of their income through petty crime and/or through offering services such as washing car windows at gas stations.
What Do These Findings Mean?
Among street-based heroin users, there are important differences between white men and African American men in the type of drugs used, the method of drug use, their social backgrounds, the way in which they identify themselves, and the health risks that they take. By understanding these differences, health professionals should be better placed to provide tailored and appropriate care when these men present to clinics and emergency rooms. As the researchers say, “understanding of different ethnic populations of drug injectors may reduce difficult clinical interactions and resultant physician frustration while improving patient access and adherence to care.” One limitation of this study is that the researchers studied one specific community in one particular area of the US—so we should not assume that their findings would apply to street-based heroin users elsewhere.
Additional Information.
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.0030452.
The US Centers for Disease Control (CDC) has a web page on HIV prevention among injection drug users
The World Health Organization has collected documents on reducing the risk of HIV in injection drug users and on harm reduction approaches
The International Harm Reduction Association has information relevant to a global audience on reducing drug-related harm among individuals and communities
US-focused information on harm reduction is available via the websites of the Harm Reduction Coalition and the Chicago Recovery Alliance
Canada-focused information can be found at the Street Works Web site
The Harm Reduction Journal publishes open-access articles
The CDC has a web page on eliminating racial and ethnic health disparities
The Drug Policy Alliance has a web page on drug policy in the United States
doi:10.1371/journal.pmed.0030452
PMCID: PMC1621100  PMID: 17076569
21.  Impact of a positive hepatitis C diagnosis on homeless injecting drug users: a qualitative study 
Background
Increasing numbers of injecting drug users are presenting to primary care and a growing number of general practices are specifically providing care for homeless people. Injecting drug users are at the greatest risk of hepatitis C infection and homeless drug misusers, because of their drug-taking behaviour and patterns, have been identified as being at greater risk of harm of blood-borne diseases than the general population. However, little work has been conducted with injecting drug users or homeless people who have hepatitis C and little is known about how the virus may affect them.
Aim
To explore the impact of a positive hepatitis C diagnosis on homeless injecting drug users.
Design of study
This study employed qualitative research. In-depth interviews allowed the exploration of the impact of a potentially life-threatening diagnosis within the context of a person's expressed hierarchy of needs.
Setting
A primary care centre for homeless people in the north of England.
Method
In-depth interviews about the impact of a positive hepatitis C diagnosis on their lives were conducted with 17 homeless injecting drug users who had received a positive hepatitis C diagnosis. The interviews were audiotaped, transcribed, and analysed using the framework approach.
Results
Receiving a positive diagnosis for hepatitis C resulted in feelings of shock, devastation, disbelief, anger, and questioning. A positive diagnosis had lasting social, emotional, psychological, behavioural, and physical effects on homeless injecting drug users, even years after the initial diagnosis. Most responders were diagnosed by a doctor in primary care or by hospital staff; however, not all had sought testing and a number were tested while inpatients and were unaware that blood had been taken for hepatitis C virus serology.
Conclusions
The implications for clinical policy and primary care practice are discussed, including the issues of patient choice, confidentiality, and pre- and post-test discussions. Post-test discussions should be followed up with additional social, psychological, and medical support and counselling.
PMCID: PMC1463127  PMID: 15826432
hepatitis C; homeless persons; intravenous drug abuse; primary care; qualitative research
22.  Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study 
PLoS Medicine  2012;9(2):e1001173.
In a qualitative study reported by Olav Lindqvist and colleagues, the range of nonpharmacological caregiving activities used in the last days of a patient's life are described.
Background
In late-stage palliative cancer care, relief of distress and optimized well-being become primary treatment goals. Great strides have been made in improving and researching pharmacological treatments for symptom relief; however, little systematic knowledge exists about the range of non-pharmacological caregiving activities (NPCAs) staff use in the last days of a patient's life.
Methods and Findings
Within a European Commission Seventh Framework Programme project to optimize research and clinical care in the last days of life for patients with cancer, OPCARE9, we used a free-listing technique to identify the variety of NPCAs performed in the last days of life. Palliative care staff at 16 units in nine countries listed in detail NPCAs they performed over several weeks. In total, 914 statements were analyzed in relation to (a) the character of the statement and (b) the recipient of the NPCA. A substantial portion of NPCAs addressed bodily care and contact with patients and family members, with refraining from bodily care also described as a purposeful caregiving activity. Several forms for communication were described; information and advice was at one end of a continuum, and communicating through nonverbal presence and bodily contact at the other. Rituals surrounding death and dying included not only spiritual/religious issues, but also more subtle existential, legal, and professional rituals. An unexpected and hitherto under-researched area of focus was on creating an aesthetic, safe, and pleasing environment, both at home and in institutional care settings.
Conclusions
Based on these data, we argue that palliative care in the last days of life is multifaceted, with physical, psychological, social, spiritual, and existential care interwoven in caregiving activities. Providing for fundamental human needs close to death appears complex and sophisticated; it is necessary to better distinguish nuances in such caregiving to acknowledge, respect, and further develop end-of-life care.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
End-of-life care is a major public health issue, yet despite the inevitability of death, issues related to death and dying are often taboo, and, if mentioned, are often referred to as “palliative care.” There are detailed definitions of palliative care, but in essence, the purpose of palliative care is to relieve any suffering in patients who are dying from progressive illness and to provide the best possible quality of life for both the patient and his or her family. In order to achieve this aim, both pharmacological and non-pharmacological management is necessary, with the latter taking a central role. Recently, a European Commission Seventh Framework Programme project, OPCARE9, aimed to improve the care of dying patients in Europe and beyond by optimizing research and clinical care for patients with cancer in the last days of their life, especially regarding well-being and comfort as death becomes imminent.
Why Was This Study Done?
There is now a growing literature base in non-pharmacological management at the end of an individual's life, particularly in relation to psychological, ethical, and communication issues as well as family-focused and culturally appropriate care. Despite this progress, there is currently little systematic knowledge in how health workers use such non-pharmacological approaches in their efforts to maximize well-being and comfort in patients experiencing their very last days of life. Therefore, in order to advance knowledge in this important clinical area, in this study the researchers reviewed and identified the variety of non-pharmacological caregiving activities performed by different professionals in the last days and hours of life for patients with cancer (and their families) in palliative care settings in the countries that participated in OPCARE9.
What Did the Researchers Do and Find?
The researchers modified an anthropological approach to collect relevant information in participating European countries—Germany, Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the UK—and Argentina and New Zealand. Staff in palliative care settings generated a list of non-pharmacological caregiving activities after discussion about which interventions and activities they carried out with patients and families during the last days of life. This preliminary list of statements was added to if staff performed a new activity when in contact with patients or the patients' family during the last days of life. The researchers then used computer-assisted qualitative data analysis to code the statements.
Using this methodology, the researchers analyzed 914 statements of caregiving activities from 16 different facilities in nine countries. The greatest number of activities described some type of caregiving for an individual carried out through contact with his or her body, such as attending to diverse bodily needs (such as cleaning and moisturizing) while maintaining comfort and dignity. Listening, talking with, and understanding (particularly between professionals and the family) was the next most frequent activity, followed by creating an esthetical, safe, and pleasing environment for the dying person and his or her family, and necessary “backstage” activities, such as organizing paperwork or care plans. Other common activities included observing and assessing, which were often described as being carried out simultaneously with other interventions; just being present (described as increasingly important close to death); performing rituals surrounding death and dying (usually directed to families); guiding and facilitating (encompassing support in a compassionate manner); and finally, giving oral and written information and advice (usually to families).
What Do These Findings Mean?
These findings show that providing for fundamental human needs close to death is complex and sophisticated but ultimately integrated into a common theme of caregiving. This study also identifies a number of areas needing further investigation, such as enhancing the sensory and general environment for the patient and family. Finally, this study suggests that developing a greater level of detail, such as improved terminology for end-of-life care, would enhance appreciation of the nuances and complexity present in non-pharmacological care provision during the last days of life, with potential benefit for clinical practice, teaching, and research.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001173.
The OPCARE9 website details more information about this end-of-life care initiative
The World Health Organization website defines palliative care, and Wikipedia gives more information (note that Wikipedia is a free online encyclopedia that anyone can edit; available in several languages)
NHS Choices also provides information about end-of-life care
doi:10.1371/journal.pmed.1001173
PMCID: PMC3279347  PMID: 22347815
23.  Why Do Women Not Use Antenatal Services in Low- and Middle-Income Countries? A Meta-Synthesis of Qualitative Studies 
PLoS Medicine  2013;10(1):e1001373.
In a synthesis of 21 qualitative studies representing the views of more than 1,230 women from 15 countries, Kenneth Finlayson and Soo Downe examine the reasons why many women in low- and middle-income countries do not receive adequate antenatal care.
Background
Almost 50% of women in low- and middle-income countries (LMICs) don't receive adequate antenatal care. Women's views can offer important insights into this problem. Qualitative studies exploring inadequate use of antenatal services have been undertaken in a range of countries, but the findings are not easily transferable. We aimed to inform the development of future antenatal care programmes through a synthesis of findings in all relevant qualitative studies.
Methods and Findings
Using a predetermined search strategy, we identified robust qualitative studies reporting on the views and experiences of women in LMICs who received inadequate antenatal care. We used meta-ethnographic techniques to generate themes and a line-of-argument synthesis. We derived policy-relevant hypotheses from the findings. We included 21 papers representing the views of more than 1,230 women from 15 countries. Three key themes were identified: “pregnancy as socially risky and physiologically healthy”, “resource use and survival in conditions of extreme poverty”, and “not getting it right the first time”. The line-of-argument synthesis describes a dissonance between programme design and cultural contexts that may restrict access and discourage return visits. We hypothesize that centralised, risk-focused antenatal care programmes may be at odds with the resources, beliefs, and experiences of pregnant women who underuse antenatal services.
Conclusions
Our findings suggest that there may be a misalignment between current antenatal care provision and the social and cultural context of some women in LMICs. Antenatal care provision that is theoretically and contextually at odds with local contextual beliefs and experiences is likely to be underused, especially when attendance generates increased personal risks of lost family resources or physical danger during travel, when the promised care is not delivered because of resource constraints, and when women experience covert or overt abuse in care settings.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Although maternal deaths worldwide have almost halved since 1990, according to the latest figures, every day roughly 800 women and adolescent girls still die from the complications of pregnancy or childbirth: in 2010, 287,000 women died during or following pregnancy and childbirth, with almost all of these deaths (99%) occurring in low-resource settings. Most maternal deaths are avoidable, as the interventions to prevent or manage the most common complications (severe bleeding, infections, high blood pressure during pregnancy, and unsafe abortion) are well known. Furthermore, many of these complications can be prevented, detected, or treated during antenatal care visits with trained health workers.
Why Was This Study Done?
The World Health Organization (WHO) recommends a minimum of four antenatal visits per pregnancy, but according to WHO figures, between 2005 and 2010 only 53% of pregnant women worldwide attended the recommended four antenatal visits; in low-income countries, this figure was a disappointing 36%. Unfortunately, despite huge international efforts to promote and provide antenatal care, there has been little improvement in these statistics over the past decade. It is therefore important to investigate the reasons for poor antenatal attendance and to seek the views of users of antenatal care. In this study, the researchers combined studies from low- and middle-income countries (LMICs) that included women's views on antenatal care in a meta-synthesis of qualitative studies (qualitative research uses techniques, such as structured interviews, to gather an in-depth understanding of human behaviour, and a meta-synthesis combines and interprets information across studies, contexts, and populations).
What Did the Researchers Do and Find?
The researchers searched several medical, sociological, and psychological databases to find appropriate qualitative studies published between January 1980 and February 2012 that explored the antenatal care experiences, attitudes, and beliefs of women from LMICs who had chosen to access antenatal care late (after 12 weeks' gestation), infrequently (less than four times), or not at all. The researchers included 21 studies (out of the 2,997 initially identified) in their synthesis, representing the views of 1,239 women from 15 countries (Bangladesh, Benin, Cambodia, Gambia, India, Indonesia, Kenya, Lebanon, Mexico, Mozambique, Nepal, Pakistan, South Africa, Tanzania, and Uganda) who were either interviewed directly or gave their opinion as part of a focus group.
The researchers identified three main themes. The first theme reflects women's views that pregnancy is a healthy state and so saw little reason to visit health professionals when they perceived no risk to their well-being—the researchers called this theme, “pregnancy as socially contingent and physiologically healthy.” The second theme relates to women's limited financial resources, so that even when antenatal care was offered free of charge, the cost of transport to get there, the loss of earnings associated with the visit, and the possibility of having to pay for medicines meant that women were unable to attend—the researchers called this theme “resource use and survival in conditions of extreme poverty.” The third theme the researchers identified related to women's views that the antenatal services were inadequate and that the benefits of attending did not outweigh any potential harms. For example, pregnant women who initially recognized the benefits of antenatal care were often disappointed by the lack of resources they found when they got there and, consequently, decided not to return. The researchers called this theme “not getting it right the first time.”
What Do These Findings Mean?
These findings suggest that there may be a misalignment between the principles that underpin the provision of antenatal care and the beliefs and socio-economic contexts of pregnant women in LMICs, meaning that even high-quality antenatal care may not be used by some pregnant women unless their views and concerns are addressed. The themes identified in this meta-synthesis could provide the basis for a new approach to the design and delivery of antenatal care that takes local beliefs and values and resource availability into account. Such programs might help ensure that antenatal care meets pregnant women's expectations and treats them appropriately so that they want to regularly attend antenatal care.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001373.
Wikipedia describes antenatal care (note that Wikipedia is a free online encyclopedia that anyone can edit)
The World Health Organization has a wealth of information relating to pregnancy, including antenatal care
The UK National Institute for Health and Clinical Excellence has evidence-based guidelines on antenatal care
The White Ribbon Alliance for Safe Motherhood has a series of web pages and links relating to respectful maternity care in LMICs
International Federation of Gynecology and Obstetrics is an international organization with connections to various maternity initiatives in LMICs
International Confederation of Midwives has details of the Millennium Development Goals relating to maternity care
doi:10.1371/journal.pmed.1001373
PMCID: PMC3551970  PMID: 23349622
24.  The effectiveness of critical time intervention for abused women and homeless people leaving Dutch shelters: study protocol of two randomised controlled trials 
BMC Public Health  2013;13:555.
Background
One of the main priorities of Dutch organisations providing shelter services is to develop evidence-based interventions in the care for abused women and homeless people. To date, most of these organisations have not used specific intervention models and the interventions which have been implemented rarely have an empirical and theoretical foundation. The present studies aim to examine the effectiveness of critical time intervention (CTI) for abused women and homeless people.
Methods
In two multi-centre randomised controlled trials we investigate whether CTI, a time-limited (nine month) outreach intervention, is more effective than care-as-usual for abused women and homeless people making the transition from shelter facilities to supported or independent housing. Participants were recruited in 19 women’s shelter facilities and 22 homeless shelter facilities across The Netherlands and randomly allocated to the intervention group (CTI) or the control group (care-as-usual). They were interviewed four times in nine months: once before leaving the shelter, and then at three, six and nine months after leaving the shelter. Quality of life (primary outcome for abused women) and recurrent loss of housing (primary outcome for homeless people) as well as secondary outcomes (e.g. care needs, self-esteem, loneliness, social support, substance use, psychological distress and service use) were assessed during the interviews. In addition, the model integrity of CTI was investigated during the data collection period.
Discussion
Based on international research CTI is expected to be an appropriate intervention for clients making the transition from institutional to community living. If CTI proves to be effective for abused women and homeless people, shelter services could include this case management model in their professional standards and improve the (quality of) services for clients.
Trial registration
NTR3463 and NTR3425
doi:10.1186/1471-2458-13-555
PMCID: PMC3682860
Critical time intervention; RCT; Intimate partner violence; Homelessness; Shelters
25.  A Guide for Health Professionals Working with Aboriginal Peoples: Executive Summary 
Objective
to provide Canadian health professionals with a network of information and recommendations regarding Aboriginal health.
Options
health professionals working with Aboriginal individuals and communities in the area of women’s health care.
Outcomes
improved health status of Aboriginal peoples in Canada.
Appropriateness and accessibility of women’s health services for Aboriginal peoples.
Improved communication and clinical skills of health professionals in the area of Aboriginal health.
Improved quality of relationship between health professionals and Aboriginal individuals and communities.
Improved quality of relationship between health care professionals and Aboriginal individuals and communities.
Evidence
recommendations are based on expert opinion and a review of the literature. Published references were identified by a Medline search of all review articles, randomized clinical control trials, meta-analyses, and practice guidelines from 1966 to February 1999, using the MeSH headings “Indians, North American or Eskimos” and “Health.”* Subsequently published articles were brought to the attention of the authors in the process of writing and reviewing the document. Ancillary and unpublished references were recommended by members of the SOGC Aboriginal Health Issues Committee and the panel of expert reviewers.
Values
information collected was reviewed by the principal author. The social, cultural, political, and historic context of Aboriginal peoples in Canada, systemic barriers regarding the publication of information by Aboriginal authors, the diversity of Aboriginal peoples in Canada, and the need for a culturally appropriate and balanced presentation were carefully considered in addition to more traditional scientific evaluation. The majority of information collected consisted of descriptive health and social information and such evaluation tools as the evidence guidelines of the Canadian Task Force on the Periodic Health exam were not appropriate.
Benefits, costs, and harms
utilization of the information and recommendations by Canadian health professionals will enhance understanding, communication, and clinical skills in the area of Aboriginal health. The resulting enhancement of collaborative relationships between Aboriginal peoples and their women’s health providers may contribute to health services that are more appropriate, effective, efficient, and accessible for Aboriginal peoples in Canada. The educational process may require an initial investment of time from the health professional.
Recommendations
Recommendations were grouped according to four themes: sociocultural context, health concerns, cross-cultural understanding, and Aboriginal health resources. Health professionals are encouraged to learn the appropriate names, demographics, and traditional geographic territories and language groups of the various Aboriginal groups in Canada. In addition, sensitivity to the impact of colonization and current socioeconomic challenges to the health status of Aboriginal peoples is warranted. Health services for Aboriginal peoples should take place as close to home as possible. Governmental obligations and policies regarding determination are recognized. With respect to health concerns, holistic definitions of health, based on Aboriginal perspectives, are put forward. Aboriginal peoples continue to experience a disproportionate burden of health problems. Health professionals are encouraged to become familiar with several key areas of morbidity and mortality. Relationships between Aboriginal peoples and their care providers need to be based on a foundation of mutual respect. Gaps and barriers in the current health care system for Aboriginal peoples are identified. Health professionals are encouraged to work with Aboriginal individuals and communities to address these gaps and barriers. Aboriginal peoples require culturally appropriate health care, including treatment in their own languages when possible. This may require interpreters or Aboriginal health advocates. Health professionals are encouraged to recognize the importance of family and community roles, and to respect traditional medicines and healers. Health professionals can develop their sensitivities towards Aboriginal peoples by participating in workshops, making use of educational resources, and by spending time with Aboriginal peoples in their communities. Aboriginal communities and health professionals are encouraged to support community-based, community-directed health services and health research for Aboriginal peoples. In addition, the education of more Aboriginal health professionals is essential. The need for a preventative approach to health programming in Aboriginal communities is stressed.
Validation
recommendations were reviewed and revised by the SOGC Aboriginal Health Issues Committee, a panel of expert reviewers, and the SOGC Council. In addition, this document was also reviewed and supported by the Assembly of First Nations, Canadian Institute of Child Health, Canadian Paediatric Society, College of Family Physicians of Canada, Congress of Aboriginal Peoples, Federation of Medical Women of Canada, Inuit Tapirisat of Canada, Metis National Council, National Indian and Inuit Community Health Representatives Organization, and Pauktuutit Inuit Women’s Association.
Sponsor
Society of Obstetricians and Gynaecologists of Canada.
PMCID: PMC3653835  PMID: 23682204 CAMSID: cams2752

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