"Home" Nursing of HIV-Positive Clients in the Urban Core
The re-establishment of trust is the first key step in offering care to this population; part of that re-establishment is the nurse's acceptance of the client's lifestyle and autonomy. Next, the clients must be assessed for their appropriateness for ARV therapy. Their ability to maintain a daily medication regimen, even one that has been simplified for their lifestyle, is important. The living situation must be reasonably stable to enable ongoing monitoring and support. ARV pills require secure storage, as they do have a street value, and some require refrigeration; these aspects must be prepared for before initiating therapy. Client "buy-in" and understanding of ARV therapy are also vital.
Daily nursing visits for the first week or more ensure compliance and aid in assessing the client's ability to manage the regimen. Adjustments can be made, and visits may be reduced to weekly. Nursing commitment to the client is as important as client commitment to the program. Lapses are common, and the nurses must strive to maintain non-judgmental contact and support to promote the re-establishment of treatment.
The program has demonstrated positive results in reaching and retaining this hard-to-serve client group.
- (Reprinted from the Canadian Nurse, Vol. 97, no.1, January 2001)
Evanna Brennan, RNEvanna Brennan is a community health nurse with the Adult/Older Adult Home Care Program, Vancouver/Richmond Health Board. She has worked in Vancouver’s Downtown Eastside for 10 years and is a member of the Canadian Association of Nurses in AIDS Care.
AcknowledgmentWe wish to thank Sue Burgess, MD, outreach physician, Vancouver/Richmond Health Board, and Irene Goldstone, MSN, BC Centre for Excellence in HIV/AIDS, and Diane Stanger, B.Sc.N., Vancouver/Richmond Health Board for reviewing this article before publication. We also wish to thank colleague Dyan Siegl for her support and literature search.
HistoryBefore 1995, most referrals to our home care nursing service in Vancouver's downtown east side (DTES) — Canada's poorest neighbourhood — were elderly and retired labourers living in the numerous SRO (single-room-occupancy) hotels. By the mid 1990s, the urban drug scene had become much more aggressive: open drug dealing and the injecting of heroin and cocaine in alleys and doorways had become the norm. An epidemic of cocaine use, fuelled by low prices and easy availability, swept across the city. Along with it came a rapidly increasing rate of HIV infection as drug users shared needles and drug "works." Many cocaine users were forced by their addiction and economics into DTES. Meanwhile, the closing of Riverview Mental Hospital drove many mentally ill into the DTES — again, by economic necessity. Thus, the elderly retired labourers were joined by a new cohort of chaotic clients having a wide range of medical problems.
More and more of our clients were multi-diagnosed, with various combinations of substance use, HIV infection, hepatitis C and mental illness. Many were in advanced stages of AIDS on initial referral and were not getting medical care or support, although they told us frankly that they did not want to die. We felt sure that we could help them, in part because medication is now available to prevent the common opportunistic infections that occur in immunocompromised clients and anti-retroviral therapy is moderating the effects of AIDS. These drugs have allowed HIV to become a chronic, manageable infection for many people. Unfortunately, our clients had often been treated poorly by people in authority, including health care professionals. Some had been abandoned because of their illegal behaviour or use of drugs. We found that we were attempting to give care to a population that was both intensely in need and intensely anti-social and untrusting.
Thus, the first step of the intervention process with the multi-diagnosed client is to re-establish trust.1 We strive to be consistent and reliable; rotating many nurses through this environment would have a negative impact. We also strive for a non-judgmental approach; abstinence from drugs is not a viable option for many of our clients in this drug-saturated environment. Triggers are everywhere, and for many, their entire social construct is based on drugs. It is their physical need, their livelihood and their medium of exchange. We have learned not to be put off by an abrasive greeting and try to see past the antisocial behaviour to the person within. We try always to remember that we are guests in their home, whatever that home may be. We work collaboratively with our clients to establish a plan of care that recognizes their autonomy while supporting them in their health care needs.
Assessing for ARV therapyAnti-retroviral (ARV) regimens involve a minimum of three different medications2. They require rigid adherence to prevent the development of resistance and are difficult for anyone to manage successfully over time, let alone a client who is drug addicted and must spend much of the day and night hustling for money to fulfil drug needs. Interventions designed for other populations do not work here.
Some people might question why we would start someone who is heavily street-involved and drug-addicted on ARV therapy. First, it is everyone's basic right to receive this care. Additionally, opportunistic infections are less frequent and less severe in someone on closely supervised therapy. We have seen immunologic responses occur despite periods of non-adherence. Nonetheless, we do assess potential clients carefully to determine their suitability for treatment.
To assess how clients manage their daily medications, we often begin with a month-long trial of vitamin pills. It helps us to monitor their drug management and helps them to understand the commitment necessary. Similarly, if they are already taking other medications, such as antipsychotics or antibiotics, and the schedule is manageable for them, we piggyback onto it.
A difficult time is "Mardi Gras" — the day that most of our clients receive their monthly welfare cheques. The party lasts until the money runs out, which is usually just a few days. The ability of many of our more street-active clients to stick with any routine of medication or health care visits during this time is limited to non-existent. Clients in hospital often leave against medical advice on cheque issue day.
We have developed networks that allow us to find out which, if any, agencies the client is already accessing. For example, if someone attends the HIV Drop-In Centre at Vancouver Native Health, which is open seven days a week, it may be best to have the medications dispensed there each day.
We also look at the clients' living situation. For many, their pattern is to flit from one SRO hotel to another or to lose their housing when they go to jail. They often spend periods of time with no fixed address, either sleeping outside or paying a 10- to 20-dollar "guest fee" to stay a night in a friend's hotel room. Unstable housing is a major complicating factor when considering these clients as potential candidates for ARV therapy. We make every attempt to assist clients to stabilize their housing — even if it is just a bed in a dormitory shelter — before starting a regimen.
Another aspect of client housing is the need for the secure storage of ARV pills. ARVs do have a street value. We have heard that some Americans cross the border to buy them on DTES street corners for a fraction of the price they would pay in the United States. SRO rooms often have flimsy door locks, and break-ins and robberies are common. If we are not satisfied that the medications would be secure in the client's room, we consider carrying them in for each visit. Often, clients are the best judges of whether pills can safely stay with them.
Refrigeration is another concern, as some ARV medications require it and many SRO hotels do not have in-room refrigerators. We have negotiated with the hotel manager for a refrigerator to be installed in the room or for the client to be allowed to use the office refrigerator.
Another consideration of the living situation is diet. ARV medications that require food or fat in the diet when taken are a poor choice for this population, who eat irregularly and rarely have an extensive choice of menu.
Finally, successful therapy requires client buy-in. Our clients have articulated many street myths about ARVs: "My friends say they are poison pills." "I want the same one my boyfriend has, it will be easier that way." "Those blue and white ones are the only good ones to take. I don't want any other kind." These myths must be dealt with as early as possible or we will be encountering them as reasons for failure later on. Providing simple, concrete information about what ARVs entail — rigid daily adherence, regular blood work and being available initially for daily visits from nurses to monitor progress and address problems — and the common side effects and their treatment is paramount. The challenge is to make sure that they understand ARV therapy and that we let them make the decision.
Starting ARV therapyIt takes at least two weeks for ARV therapy to be approved by the BC Centre for Excellence in HIV/AIDS , which gives us time to establish a relationship with the client and prepare the client for the regimen. Once clients have made the decision to start they are initially eager to begin; we take advantage of that enthusiasm to help them define for themselves some goals and ground rules, keeping the reality of their environment in mind.
We discuss with the physician what ARV regimen will best suit the client's unique situation; one size does not fit all. The best regimen is the one that can be maintained over time, which often is not the one with the best medical track record. For example, regimens requiring dosing three or more times a day are impossible for most of this population; twice-daily doses can be managed by some, but, for many, once-daily dosing may be the only viable option. Our goal is to ensure that the client has the simplest effective regimen on which they can succeed.
For at least the first week of therapy, we visit the client daily for counselling, monitoring and support. The client is made aware of common side effects, and we sometimes dispense medications to deal with them (e.g., dimenhydrinate for nausea). Side effects rarely cause discontinuation if they are dealt with as soon as they appear. Our daily visits quickly make it clear which clients are unable to manage independently and will require ongoing daily supervision. For example, Tammi wanted to take the pills and was capable of organizing parts of her life independently; however, she could not actually get the pills into her mouth and swallow them: "I just stare at them." She identified that the nurse had to hand her the dose each day and support her emotionally while she took her pills. For other clients, remembering to take an evening dose can be a problem because of nocturnal drug use or street activity. The solution may be as simple as giving them a pill timer, or the regimen may have to be revisited. After one week the client is usually settled on the regimen and we can discuss reducing visits to weekly; however, our clients do have our business cards with our cell phone numbers so that they can have immediate daytime access if needed.
Just as the client must be committed to ARV therapy, we must be committed to our clients. Our commitment always includes at least weekly visits to monitor compliance and pour medications, to assess for opportunistic infections and to support the client. It may include re-ordering drugs, facilitating blood work, and transporting the client to follow-up appointments, etc. We work closely with Sue Burgess, outreach physician to assess problems and make pragmatic medical decisions adapted to this chaotic environment.
Medication administration is as much a way of maintaining contact as it is controlled distribution. This continued contact allows assessment and assistance in wider support issues such as housing and food. As the relationship develops, the nurse can introduce further medical care and stabilization options (e.g., methadone program for opioid withdrawal). The message that someone does pay attention — "Someone does care about you" — has to be delivered with every pill.
Maintaining complianceOur clients are always on the edge of failure. Much of the time, we can do little to prevent non-compliance. Increased drug use and an inability to continue on prescribed therapy is a common and unfortunate fact of life here. Negative triggers are buried in their lives and can be set off by seemingly minor situations.
One of our clients, 37-year-old Tony, went to see a replacement doctor to get his methadone prescription renewed. The doctor was new to methadone prescribing in this environment and had a set of rigid questions she had decided to ask every client. Angered by the questions, Martin ran from the office and immediately purchased street drugs. He later explained that he felt that the unfamiliar doctor did not believe him, which triggered memories of childhood abuse and feelings of uncontrollable anger. He began a week-long drug binge, during which he trashed his room, pawned his possessions, threw his pills out and refused to allow any nursing visits. After the binge he felt that he was a failure, worthless. Our nursing commitment was crucial. Tony’s history was one where people had abandoned him; the fact that we did not give up on him was the best support we could offer. We stopped by his room just to say hello through the closed door; we made an effort to maintain casual contact on the street; we left our cards and cell phone numbers; we asked him to call whenever he wanted to. It took a month before he restabilized, recovered some self-confidence and requested assistance in starting to take his medications again.
In other cases, the sign that a client is reaching out to reconnect may be as simple as him or her asking one of us for a quarter.
Once contact has been re-established and we and the client have agreed that restarting the schedule is possible, the client needs to have blood work done to determine if resistance has developed to the ARV regimen. And the cycle begins again.
Our experiences in Vancouver's DTES have emphasized for us the importance of basing nursing interventions on the client's unique circumstances3. This individualized care is vital to assisting a population of multi-diagnosed clients living in a street-drug saturated environment. Nurses facing this population need to assess themselves for internal barriers that could hinder their care. We need to educate ourselves and listen to the clients we are trying to serve. It is too easy to underestimate their ability and forget that they have a right to make a choice. Similarly, we need to work toward changes to external barriers, such as restrictive institutional policies, that hinder these clients' access to care. We need to be advocates for our clients, particularly women, who are especially vulnerable, oppressed and, often, afraid to speak out.4 We need to coordinate support with other caregivers. Overall, we need to be open-minded and flexible in our approach to all clients.
* Since this program was written, a new initiative — the MAT/DOT (Maximally Assisted Therapy/Directly Observed Therapy) Program to support clients in the Downtown Eastside to take their ARV medication — has begun and is showing success.
References1. Anderson, M., Smereck, G., Hockman, E., Ross, D. and Ground, K. Nurses decrease barriers to health care by "hyperlinking" multiple-diagnosed women living with HIV/AIDS into care, Journal of the Association of Nurses in AIDS Care, 10(2), 1999, 5565; Corazzini, J. Trust as a complex multi-dimensional construct, Psychological Reports, 40, 1977, 75-80; Rotter, J. Generalized expectancies for interpersonal trust, American Psychologist, 26(1), 1971, 443-452; Semmes, C. Developing trust: Patient-practitioner encounters in natural health care, Journal of Contemporary Ethnography, 19(4), 1991, 450-70; Thorne, S. and Robinson, C. Reciprocal trust in health care relationships, Journal of Advanced Nursing, 9, 1998, 563-572; Trojan, L. and Yonge, O. Developing trusting, caring relationships: Home care nurses and elderly clients, Journal of Advanced Nursing, 18, 1993, 1903-10.
2. Haberl, A., Gute, P., Carlebach, A., Mosch, M., Miller, Y. and Staszewski, S. Once-daily NVP/DDI/3TC for the IVDU HIV-1 infected population of the Frankfurt HIV-cohort, International Conference on AIDS, 12-344 (Abstract no. 22398), Geneva,1998; Pernerstorfer-Schoen, H., Hein, U., Thoeny, S., Tschachler, E., Stingl, G., Rieger, A. and Guertal, W. Nevirapine & didanosine & lamivudine — First experience with a once-daily dosing antiretroviral combination therapy, International Conference on AIDS, 12-600 (Abstract no.32393), Geneva 1998.
3. Lyons, C. Competency, compliance and contracting, Harm Reduction, Spring, 1997, 7-9.
4. Sibbald, B. One is too many, Canadian Nurse, October, 1996, 22-24.
(Reprinted from the Canadian Nurse, Vol. 97, no.1, January 2001)