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AIDS Care: Psychological and Sociomedical Aspects of AIDS/HIV Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/caic20
Care in the community and by the community K. McCann
a
a
Institute for Social Studies in Medical Care , Hampstead, London, UK Published online: 25 Sep 2007.
To cite this article: K. McCann (1990) Care in the community and by the community, AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, 2:4, 421-424, DOI: 10.1080/09540129008257767 To link to this article: http://dx.doi.org/10.1080/09540129008257767
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/page/termsand-conditions
AIDS CARE, VOL. 2, NO. 4, 1990
42 1
Care in the community and by the community K. MCCANN Downloaded by [Deakin University Library] at 11:04 14 March 2015
Institute for Social Studies in Medical Care, Hampstead, London, UK
Community care is a vague term used to cover a myriad of circumstances and often evoked as a panacea for all ills. The emphasis in many papers on community organization and activism highlighted the reality of what care in the community often becomes, namely care by volunteers, by informd carers, by the community itself. Indeed a strong theme running throughout the Social Science and Policy section of the conference was how community activism has challenged the established systems of health care, particularly where services are judged to be either inadequate or idsensitive to the needs of people with HIV infection or AIDS. Examples of how existing formal services had been moulded to suit the needs of particular groups within the community especially those who were previously not being served by conventional services were discussed. Rather than being in a formal scientific form as in other sections of the conference (i.e. where research methods and results were discussed), oral and poster presentations about community care were largely descriptive. Where evaluations were reported the methods were often left vague. Consequently, the character of the presentations was mostly one of discussing models of care from an experiential point of view and describing the ways in which problems in the delivery of care had been overcome and how solutions may be relevant elsewhere.
ACCCS~ to health care-provision by statutory bodies
Many of the accounts of provision of health care by statutory or formal agencies were accounts of action research whereby models of care were developed through a process of operational experience. A number of presentations described how health care was made more accessible to people who were considered hard to reach by conventional services. One example was a system where medical services were offered by staff from a local hospital, onsite at a methadone programme (Batki, THD60). Evaluation suggested that use of these onsite medcal services was high and served a group who were not previously receiving health care. Another service which exists in Boston, USA uses a private medical contractor and is offered to people who are homeless, live in shelters or in unstable housing (Hagerty, SD809). Setvices are available in either an outpatient clinic, a neighbowhood health clinic, peoples’ homes or from a mobile unit. Again assessment by independent hospital staff concluded that patients who were not obtaining health care before were now receiving quality care and that compliance had become assured as a result of providing services within the patient’s own setting. A community based family health service in New York does what they describe as ‘peri-
Downloaded by [Deakin University Library] at 11:04 14 March 2015
422
SAN FRANCISCO SUMMARIES:K. MCCANN
ing structures and when HIV came along shifted this sceptism to health care. An important theme both in the papers and in the response of activists inside and outside the conference was how community activism had both challenged existing systems and defined new ones through an unwillingness to accept services considered inappropriate (Jones, FD788, Eldaz, FD789). In some areas the response of people with HIV infection or AIDS (pwa) has taken on the character of a civil rights movement where people have argued for the right to self represention and determination and an input into the decision making process of the statutory b d e s (Powers, 4062). Consequently HIV health care, particularly in the West, has been characterized by an unwillingness to accept insufficient care or inadequate responses on the part of governmental bodies (Jones, FD788, Eldaz, FD789). The present focus of dissatisfaction with health care amongst community groups is unequal access to drug trials particularly for women and blacks as well as the slowness with which drugs emerge from the regulatory process. In order to counter these perceived inadequacies a number of community programmes have been established (Cohen, SD781, Bnll-Edwards, SD862). Within the ‘community’ there is a recognition that certain unlicenced drugs are already available and being used ‘underground’ and as a result, Project INFORM in San Francisco set out to do trials using these experimental drugs. Based in an inner city community health facility this controversial project aims to enable an equality of access to the drugs and to provide the people involved with more control than in traditional trials. They do not use placebos and set out to guarantee that results are available quickly (Delaney, Plenary 10.30 Friday 22nd). Health care by the community, for the Where services have not been available community the ‘community’ has mobilized voluntary In general terms it was argued that the support to fill the gap. An example of such a community response to HIVIAIDS is unri- service is the PWA Health group, a New valled in any other previous illness. The gay York based grassroots organization which ‘community’ was already challenging exist- assists PWAs to gain access to treatment and
natal AIDS prevention work’ for hard-toreach clients, namely young, single, poor and often homeless (Dixon, ThD892). By this work they mean assessing the vahdity of risk assessment in the prevention of HIV infection amongst this group and looking at the usefulness of specific interventions used. The research here consisted of examining how each person had changed their use of health services if at all since they became involved in the project. The researchers concluded that for any hard to reach groups health care was best provided in settings which were appropriate to the people they serve. Other examples of targetting particular groups included health education aimed at, Hispanic males (Hernandez, FD787) and intravenous drug users (Thompson, FD797, Feruson, FD771), and a buddy service to provide home care for ethnic minorities following hospital discharge (Khck, SD59). (Legal services for people with HIV infection were also being provided in existing community facilities (Hanseur, FD773)). Finally there were numerous descriptions of home care provided or assisted by public hospitals or community health units. Home care was viewed as useful in a number of ways; first, in providing care in areas where there is a small number of people who are widely distributed (Dideriksen, SD8 lo), in order to reduce the frequency of acme admissions and increase the efficiency of discharge (Waller, SD83 1, Widman, SD843, Coene, SD846, Weslowski, SD829) and/or to establish systems of case management by using the patient’s home as the focal point of the various agencies that might be involved (Fairchld, 4035, Devine, 4030, Welsh, 4025). By making it more sensitive to the needs of the community it became for effective (4025).
Downloaded by [Deakin University Library] at 11:04 14 March 2015
CARE IN THE COMMUNITY AND BY THE COMMUNITY 423
provides information as well as engaging in direct action to advocate the rights of PWAs. An interview study conducted in order to evaluate their work concluded that the group provides for otherwise unmet treatment needs (Hodel, ThD63). In a similar vein, EMPOWER, an organization for prostitutes in Bangkok and FACT, a group of men who have paid sex with men, recognized the need to do prevention work among sex workers and their clients and has incorporated HIV prevention work into existing outreach organizations. Those involved in this work argued that for them ‘tightly defined communities, especially those who have been marginalized, prove effective in organizing both around AIDS and broader community development’ (Thompson, FD797). In reality the volume of work undertaken by volunteers in response to the AIDS pandemic is too large for governments to meet alone and voluntary work is essential (Suarez, SD833). Some acknowledgment of the part played by volunteer organizations in providing care came in a paper which looked at the economic si@cance of volunteer services in providing community care. Following analysis of the work done by volunteers in Puerto Rico the study concluded that the role of volunteers was immense and significantly lessened the economic burden on government and the private sector (Rodriguez, FD817). The experience in Chicago is that a diverse volunteer programme has been invaluable for public hospital patients (Boyd, SD804) and in the Bronx, New York, that the special needs of patients from minority groups inadequately served by public hospitals could be provided on an individual basis by trained volunteers (Klick, SD59). The importance of enticing more people to do voluntary work with HIV and once involved to keep them motivated to continue was highlighted in a presentation about a buddy system of care which has provided better home care facilities and contributes to a shorter stay in hospital in the Netherlands (De Rijk, SD835). In describing the role of
the buddy the authors conclude that ‘Buddy care’ benefits both client and the health care ‘substitution’ policy ofthe Dutch government’. A note of warning about reliance on voluntary labour was given at the plenary of the first day of the conference when the San Francisco model of care was discussed. The San Francisco model of health care is an m y of public, voluntary and private services. The programme came from the community with existing groups establishing the services which were later supported by the statutory organizations. Ten years on however the model is crumbling largely because it s t i l l relies heavily on volunteers. Problems have been encountered in sustaining the levels of commitment necessary and avoiding burnout amongst volunteers over this long period. The problem with the San Francisco model is that it came about because the community responded to a crisis but, ‘what might be suitable for a crisis does not always persist for the siege’ (Robert Munk, Wed-Introductory Seminar). Indeed one study assessed the success of various strategies for dealing with burnout amongst volunteers in Australia and concluded that for volunteer services to continue to meet the increasing demands of HIV health care an approach to the care of the voluntary worker is vital (Crooks, FD791).
Organization and cosrdination of community care As the number of services in the community have grown there has been an increasing recognition of the importance of co-ordinating the diverse, public, private and nonstatutory services either for reasons of funding or oganizationally and in public and private organizations working together in order to ensure coverage by the services. In San Francisco itself the public health department became the focal point for coordinating the community response to HIV both externally by linking voluntary, advocacy, professional, public and private groups and internally by co-ordinating traditional
Downloaded by [Deakin University Library] at 11:04 14 March 2015
424
SAN FRANCISCO SUMMARTES: K MCCANN
public health services and community based primary care and tertiary services and prov i m a link with local authorities, prisons, schools and social services. In South Bronx, New York City the public department supported community groups to provide services. Thirty-two community groups and staf€ of community health and social services were interviewed about obstacles in their taking on AIDS prevention work. Lack of AIDS services in the community was identified as a major obstacle. Technical assistance and support was provided by public organizations with the result that community groups were able to establish services and play a greater role in community education and prevention (Umi, FD779). In other areas liaisons between different volunteer organizations have proved invaluable. An assessment of the joint working of a community based advocacy organization indicated that together groups can affect health legislation and regulations (Jones, FD788). Others have co-ordinated funding and planning of HIV/AIDS services either where voluntary body resources are being used or different community groups are competing for the same funding (Jay, FD890) or have engaged existing organizations not primarily involved in HIV work, to take on work in this area (Kelmanson, ThD881, Schindler, FD891).
Role of the family Realistically any discussion of care in the community is inadequate without a discussion of the role of informal care. In one study interviews with 50 carers found that informal care of people with AIDS resembles that of community care for the elderly and for the chronically ill with family members especially women providing the bulk of the daily care. ‘As with these other populations, family care and especially care from a co-resident female proves to be essential in the ability of the ill or disabled to live in the community’ (Schiller, ThD822, Powell-Cope, ThD819). The authors con-
cluded however that even with the family input and often because of this very reliance on famhes to provide the care a substantial proportion of patients are at risk of not having their needs met. Community care provided by formal agencies can simply be a means of shoring up family care. An evaluation of six home care programmes carried out by WHO in Africa found that whilst centrally funded multi-disciplinary teams provided physical, psychological, material and educational inputs over wide geographcal areas their major role was to support the family who provided the main care (Victor, ThD61). Summary and conclusion
As the numbers of people with HIV infection increase the favoured option for care in the future is to increase community and home care. Without doubt also the statutory services have recognized the need to make prevention, educational and care services sensitive and appropriate to the client group they aim to serve and many unconventional systems are being put into place in order to do this. The reality of community care is so often care by the family and volunteers and there has to be some attempt to support informal carers materially and emotionally. Without the work of these groups it would be impossible for governmental or formal agencies to provide the necessary degree of quality of care. It would seem that a combination of pressure from the ‘communities’ affected by HIVIAIDS and flexibility in providing care by statutory and voluntary groups has made it possible to provide different schemes of community care or at least made suitable service delivery happen more quickly and more appropriately than might otherwise have been the case. There was some feeling at the conference that it would be comfoning to think that some of these innovations, hard won for HIV/AIDS, could be replicated for groups of patients in the community who may not have such a vocal advocacy group to back them.
AIDS Care: Psychological and Sociomedical Aspects of AIDS/HIV Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/caic20
Care in the community and by the community K. McCann
a
a
Institute for Social Studies in Medical Care , Hampstead, London, UK Published online: 25 Sep 2007.
To cite this article: K. McCann (1990) Care in the community and by the community, AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, 2:4, 421-424, DOI: 10.1080/09540129008257767 To link to this article: http://dx.doi.org/10.1080/09540129008257767
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/page/termsand-conditions
AIDS CARE, VOL. 2, NO. 4, 1990
42 1
Care in the community and by the community K. MCCANN Downloaded by [Deakin University Library] at 11:04 14 March 2015
Institute for Social Studies in Medical Care, Hampstead, London, UK
Community care is a vague term used to cover a myriad of circumstances and often evoked as a panacea for all ills. The emphasis in many papers on community organization and activism highlighted the reality of what care in the community often becomes, namely care by volunteers, by informd carers, by the community itself. Indeed a strong theme running throughout the Social Science and Policy section of the conference was how community activism has challenged the established systems of health care, particularly where services are judged to be either inadequate or idsensitive to the needs of people with HIV infection or AIDS. Examples of how existing formal services had been moulded to suit the needs of particular groups within the community especially those who were previously not being served by conventional services were discussed. Rather than being in a formal scientific form as in other sections of the conference (i.e. where research methods and results were discussed), oral and poster presentations about community care were largely descriptive. Where evaluations were reported the methods were often left vague. Consequently, the character of the presentations was mostly one of discussing models of care from an experiential point of view and describing the ways in which problems in the delivery of care had been overcome and how solutions may be relevant elsewhere.
ACCCS~ to health care-provision by statutory bodies
Many of the accounts of provision of health care by statutory or formal agencies were accounts of action research whereby models of care were developed through a process of operational experience. A number of presentations described how health care was made more accessible to people who were considered hard to reach by conventional services. One example was a system where medical services were offered by staff from a local hospital, onsite at a methadone programme (Batki, THD60). Evaluation suggested that use of these onsite medcal services was high and served a group who were not previously receiving health care. Another service which exists in Boston, USA uses a private medical contractor and is offered to people who are homeless, live in shelters or in unstable housing (Hagerty, SD809). Setvices are available in either an outpatient clinic, a neighbowhood health clinic, peoples’ homes or from a mobile unit. Again assessment by independent hospital staff concluded that patients who were not obtaining health care before were now receiving quality care and that compliance had become assured as a result of providing services within the patient’s own setting. A community based family health service in New York does what they describe as ‘peri-
Downloaded by [Deakin University Library] at 11:04 14 March 2015
422
SAN FRANCISCO SUMMARIES:K. MCCANN
ing structures and when HIV came along shifted this sceptism to health care. An important theme both in the papers and in the response of activists inside and outside the conference was how community activism had both challenged existing systems and defined new ones through an unwillingness to accept services considered inappropriate (Jones, FD788, Eldaz, FD789). In some areas the response of people with HIV infection or AIDS (pwa) has taken on the character of a civil rights movement where people have argued for the right to self represention and determination and an input into the decision making process of the statutory b d e s (Powers, 4062). Consequently HIV health care, particularly in the West, has been characterized by an unwillingness to accept insufficient care or inadequate responses on the part of governmental bodies (Jones, FD788, Eldaz, FD789). The present focus of dissatisfaction with health care amongst community groups is unequal access to drug trials particularly for women and blacks as well as the slowness with which drugs emerge from the regulatory process. In order to counter these perceived inadequacies a number of community programmes have been established (Cohen, SD781, Bnll-Edwards, SD862). Within the ‘community’ there is a recognition that certain unlicenced drugs are already available and being used ‘underground’ and as a result, Project INFORM in San Francisco set out to do trials using these experimental drugs. Based in an inner city community health facility this controversial project aims to enable an equality of access to the drugs and to provide the people involved with more control than in traditional trials. They do not use placebos and set out to guarantee that results are available quickly (Delaney, Plenary 10.30 Friday 22nd). Health care by the community, for the Where services have not been available community the ‘community’ has mobilized voluntary In general terms it was argued that the support to fill the gap. An example of such a community response to HIVIAIDS is unri- service is the PWA Health group, a New valled in any other previous illness. The gay York based grassroots organization which ‘community’ was already challenging exist- assists PWAs to gain access to treatment and
natal AIDS prevention work’ for hard-toreach clients, namely young, single, poor and often homeless (Dixon, ThD892). By this work they mean assessing the vahdity of risk assessment in the prevention of HIV infection amongst this group and looking at the usefulness of specific interventions used. The research here consisted of examining how each person had changed their use of health services if at all since they became involved in the project. The researchers concluded that for any hard to reach groups health care was best provided in settings which were appropriate to the people they serve. Other examples of targetting particular groups included health education aimed at, Hispanic males (Hernandez, FD787) and intravenous drug users (Thompson, FD797, Feruson, FD771), and a buddy service to provide home care for ethnic minorities following hospital discharge (Khck, SD59). (Legal services for people with HIV infection were also being provided in existing community facilities (Hanseur, FD773)). Finally there were numerous descriptions of home care provided or assisted by public hospitals or community health units. Home care was viewed as useful in a number of ways; first, in providing care in areas where there is a small number of people who are widely distributed (Dideriksen, SD8 lo), in order to reduce the frequency of acme admissions and increase the efficiency of discharge (Waller, SD83 1, Widman, SD843, Coene, SD846, Weslowski, SD829) and/or to establish systems of case management by using the patient’s home as the focal point of the various agencies that might be involved (Fairchld, 4035, Devine, 4030, Welsh, 4025). By making it more sensitive to the needs of the community it became for effective (4025).
Downloaded by [Deakin University Library] at 11:04 14 March 2015
CARE IN THE COMMUNITY AND BY THE COMMUNITY 423
provides information as well as engaging in direct action to advocate the rights of PWAs. An interview study conducted in order to evaluate their work concluded that the group provides for otherwise unmet treatment needs (Hodel, ThD63). In a similar vein, EMPOWER, an organization for prostitutes in Bangkok and FACT, a group of men who have paid sex with men, recognized the need to do prevention work among sex workers and their clients and has incorporated HIV prevention work into existing outreach organizations. Those involved in this work argued that for them ‘tightly defined communities, especially those who have been marginalized, prove effective in organizing both around AIDS and broader community development’ (Thompson, FD797). In reality the volume of work undertaken by volunteers in response to the AIDS pandemic is too large for governments to meet alone and voluntary work is essential (Suarez, SD833). Some acknowledgment of the part played by volunteer organizations in providing care came in a paper which looked at the economic si@cance of volunteer services in providing community care. Following analysis of the work done by volunteers in Puerto Rico the study concluded that the role of volunteers was immense and significantly lessened the economic burden on government and the private sector (Rodriguez, FD817). The experience in Chicago is that a diverse volunteer programme has been invaluable for public hospital patients (Boyd, SD804) and in the Bronx, New York, that the special needs of patients from minority groups inadequately served by public hospitals could be provided on an individual basis by trained volunteers (Klick, SD59). The importance of enticing more people to do voluntary work with HIV and once involved to keep them motivated to continue was highlighted in a presentation about a buddy system of care which has provided better home care facilities and contributes to a shorter stay in hospital in the Netherlands (De Rijk, SD835). In describing the role of
the buddy the authors conclude that ‘Buddy care’ benefits both client and the health care ‘substitution’ policy ofthe Dutch government’. A note of warning about reliance on voluntary labour was given at the plenary of the first day of the conference when the San Francisco model of care was discussed. The San Francisco model of health care is an m y of public, voluntary and private services. The programme came from the community with existing groups establishing the services which were later supported by the statutory organizations. Ten years on however the model is crumbling largely because it s t i l l relies heavily on volunteers. Problems have been encountered in sustaining the levels of commitment necessary and avoiding burnout amongst volunteers over this long period. The problem with the San Francisco model is that it came about because the community responded to a crisis but, ‘what might be suitable for a crisis does not always persist for the siege’ (Robert Munk, Wed-Introductory Seminar). Indeed one study assessed the success of various strategies for dealing with burnout amongst volunteers in Australia and concluded that for volunteer services to continue to meet the increasing demands of HIV health care an approach to the care of the voluntary worker is vital (Crooks, FD791).
Organization and cosrdination of community care As the number of services in the community have grown there has been an increasing recognition of the importance of co-ordinating the diverse, public, private and nonstatutory services either for reasons of funding or oganizationally and in public and private organizations working together in order to ensure coverage by the services. In San Francisco itself the public health department became the focal point for coordinating the community response to HIV both externally by linking voluntary, advocacy, professional, public and private groups and internally by co-ordinating traditional
Downloaded by [Deakin University Library] at 11:04 14 March 2015
424
SAN FRANCISCO SUMMARTES: K MCCANN
public health services and community based primary care and tertiary services and prov i m a link with local authorities, prisons, schools and social services. In South Bronx, New York City the public department supported community groups to provide services. Thirty-two community groups and staf€ of community health and social services were interviewed about obstacles in their taking on AIDS prevention work. Lack of AIDS services in the community was identified as a major obstacle. Technical assistance and support was provided by public organizations with the result that community groups were able to establish services and play a greater role in community education and prevention (Umi, FD779). In other areas liaisons between different volunteer organizations have proved invaluable. An assessment of the joint working of a community based advocacy organization indicated that together groups can affect health legislation and regulations (Jones, FD788). Others have co-ordinated funding and planning of HIV/AIDS services either where voluntary body resources are being used or different community groups are competing for the same funding (Jay, FD890) or have engaged existing organizations not primarily involved in HIV work, to take on work in this area (Kelmanson, ThD881, Schindler, FD891).
Role of the family Realistically any discussion of care in the community is inadequate without a discussion of the role of informal care. In one study interviews with 50 carers found that informal care of people with AIDS resembles that of community care for the elderly and for the chronically ill with family members especially women providing the bulk of the daily care. ‘As with these other populations, family care and especially care from a co-resident female proves to be essential in the ability of the ill or disabled to live in the community’ (Schiller, ThD822, Powell-Cope, ThD819). The authors con-
cluded however that even with the family input and often because of this very reliance on famhes to provide the care a substantial proportion of patients are at risk of not having their needs met. Community care provided by formal agencies can simply be a means of shoring up family care. An evaluation of six home care programmes carried out by WHO in Africa found that whilst centrally funded multi-disciplinary teams provided physical, psychological, material and educational inputs over wide geographcal areas their major role was to support the family who provided the main care (Victor, ThD61). Summary and conclusion
As the numbers of people with HIV infection increase the favoured option for care in the future is to increase community and home care. Without doubt also the statutory services have recognized the need to make prevention, educational and care services sensitive and appropriate to the client group they aim to serve and many unconventional systems are being put into place in order to do this. The reality of community care is so often care by the family and volunteers and there has to be some attempt to support informal carers materially and emotionally. Without the work of these groups it would be impossible for governmental or formal agencies to provide the necessary degree of quality of care. It would seem that a combination of pressure from the ‘communities’ affected by HIVIAIDS and flexibility in providing care by statutory and voluntary groups has made it possible to provide different schemes of community care or at least made suitable service delivery happen more quickly and more appropriately than might otherwise have been the case. There was some feeling at the conference that it would be comfoning to think that some of these innovations, hard won for HIV/AIDS, could be replicated for groups of patients in the community who may not have such a vocal advocacy group to back them.
