Due to recent advancements in medical knowledge and treatment methods, HIV-positive individuals are now living longer. However, as they age they often experience higher levels of chronic pain and disability, particularly among past and current drug-using persons. This has led to research that is focused on how best to provide care for people living with HIV and how to ensure their needs are met as they approach end-of-life. Although almost half of the people living with HIV/AIDS in the US medical system are African American, and almost half have current or past drug use disorders, there are very few studies that focus on their specific care needs. Dr Knowlton’s research findings suggest that current illicit drug use impacts vulnerable populations’ HIV treatment success through its adverse effects on the quality and function of their supportive relationships. Results of a study of drug-using persons on HIV treatment indicated that among those with high social support, 61% of former drug users, compared with 30% of current drug users, had controlled levels of plasma HIV. Among those with low social support, there was no significant difference in viral control for current as compared to former drug users; 23% of current drug users were virally controlled as were 27% of former drug users.
African Americans and drug users have higher morbidity and mortality rates than whites and non-drug users, and this is related to their challenges in engaging with healthcare providers, maintaining caregiving (unpaid, emotionally or instrumentally supportive) relationships, and adhering to HIV medications. These populations also suffer significantly from chronic pain (which has been defined as pain that occurs on at least half the days for six months or longer) that is often underestimated and under-prescribed for by health professionals.
Setting new goals
Working towards increasing the quality of life of people with HIV, Dr Amy Knowlton is currently working on the AFFIRM Care project. This project aims to investigate the complex themes of chronic pain, palliative care interests, and the role of caregivers. Dr Amy Knowlton’s work focuses specifically on African American populations living with HIV/AIDS, with an emphasis on enhancing their equitable care and support, and quality of life. The AFFIRM Care study examines the long-term effects of distressing symptoms and caregiving on both patients’ and caregivers’ quality of life. The findings will enhance understanding of the best approaches to sustain caregiving to African American drug users living with HIV.
Informal care: blessing or burden?
One of the most striking points to come out of Dr Knowlton’s work is the importance to HIV-positive drug-using persons’ engagement in medical care and treatment adherence of their informal caregivers (defined as persons providing unpaid emotional support or instrumental assistance to someone with a chronic or disabling condition), and the challenges faced by these caregivers. Disadvantaged African Americans have been found to provide higher rates of caregiving compared to more advantaged and white US populations. Informal caregivers tend to be family or friends, and previous studies have found that most persons with HIV who use drugs report a main caregiver who is either their kin or main partner. Dr Knowlton’s prior studies have found that the receipt of informal care, and better communication between caregiver and patient, are associated with optimal adherence to HIV treatment and viral control.
However, providing care often comes at a cost. Dr Knowlton’s prior studies have found that a third of caregivers doubt their ability to continue and almost two-thirds feel they have no-one they can turn to to discuss the challenges they face in their care provision. Furthermore, many caregivers perceive a sense of HIV stigma by association, presenting an additional barrier to their ability to establish strong support networks. Lastly, Dr Knowlton has identified a gender imbalance in the benefits of receiving informal care. For men, having a main partner and reciprocating support from their partner were associated with better adherence to HIV treatment. In contrast, adherence to HIV treatment in women has been found to be greatest (92%) in those with no main partner and lowest (57%) in those with an HIV-positive partner. This is thought to arise from a difference in gender roles, with women’s ability to self-care compromised by the demands of caring for their partner.
Chronic pain and drug use
A high proportion (30–60%) of Americans in HIV medical care suffer from chronic pain, which has a significant negative impact on their wellbeing and quality of life. Dr Knowlton’s work has found that the negative impact of chronic pain reaches far beyond the immediate effects on individuals. The presence of chronic pain in people living with HIV has been found to reduce their reciprocity of support to their caregivers and affect negative interactions (e.g., insensitive interactions, unwanted advice, neglect, or rejection) with their support network members. Chronic pain, independently of depression or current drug use, is also associated with poor communication with and lower trust of their healthcare providers, which in turn is associated with their non-adherence to HIV treatment.
Chronic pain is also associated with depression and drug-use relapse, which often results in poor engagement with HIV healthcare and low success of HIV treatment. The links between pain and drug abuse are further complicated amongst opioid users by the possibility of opioid-induced hypersensitivity to pain and opioid tolerance. These two conditions are often difficult to distinguish, may co-occur, but require very different treatment. Furthermore, drug users are less likely to be prescribed effective pain medication due to fears from health professionals of abetting their addiction. However, a good rapport between patient and healthcare provider has been shown to have a positive effect on pain management.
Breaking the barriers
To address these challenges, Dr Knowlton is currently focusing on palliative care, a medical speciality new to the US that aims to enhance the quality of life and reduce suffering of people living with a serious illness. The AFFIRM Care study will assess patients’ chronic pain, treatment aims and end-of-life healthcare preferences. It will inform how palliative care principles can be introduced into routine HIV clinical practice. It will also facilitate communication among patients, caregivers and medical providers to encourage collaborative treatment decision making. Additionally, the findings will inform how to involve caregivers in the advance care planning of patients with mental or drug use disorders to ensure their care is aligned with the patients’ care preferences if they become unable to make healthcare-related decisions. Dr Knowlton’s study also aims to address the issue of caregiver stress and burnout. The study will longitudinally examine caregivers’ resource and skills needs to promote their quality of life and inform ways to facilitate sustained care through end-of-life whilst minimising the possibility of care cessation.
Your research focuses on disadvantaged racial/ethnic minorities living with HIV/AIDS and current or prior drug abuse. Why do you think this is an important population to study and understand?
African Americans and those with a drug-use disorder make up a large proportion of the population of persons with HIV/AIDS in US medical care. These populations continue to have significant challenges engaging with healthcare providers and accessing and adhering to HIV medications, which affects their higher morbidity and mortality rates compared to whites and non-drug using persons with HIV/AIDS.
African Americans living with HIV/AIDS and drug use disorders have major challenges with chronic pain and suffering, which is inadequately acknowledged or addressed in clinical care. In our studies, two-thirds of our samples report chronic pain that interferes with their function. We have found in our current study that chronic pain interference in function is associated with low adherence to HIV treatment; only 39% reported excellent adherence to HIV treatment, which is necessary for viral control.
Why do you think caregiving is important to study in this population?
Our research findings reveal that caregivers have major positive influences on the population’s engagement in HIV healthcare, treatment adherence, and viral suppression, over and above effects of depression and active drug use.
Of the HIV patients on HIV treatment in our prior study, half reported current heroin or cocaine use, 44% unstable housing, 79% pain symptoms (32% often or always), 40% memory problems, and yet 70% had treatment success, as indicated by a controlled viral load.
Our findings have revealed that this patient population’s receipt of informal care, better communication with, and reciprocity of support to their caregivers, were associated with their improved depressive symptoms and HIV treatment adherence and their viral control.
Our results underscore the degree to which caregiving is normative in disadvantaged African American communities, and that caregiving can be considered a critical aspect of their social capital, and a vital community resiliency.
Your current study is examining the study population’s interests in palliative care. What is palliative care and how does it differ from the traditional model of medical care in the US?
In the US, aggressive medical care is the default care approach through end-of-life, even when little to no benefit is expected for the patient’s health and wellbeing. Alternatively, palliative care is concerned with managing serious, often chronic or potentially life-limiting, conditions for which there is no cure. It aims to reduce patients’ pain and suffering, optimise their function, and to enhance the quality of life of patients and their caregivers through end-of-life.
It recognises that caregiving relationships are the main structure of people’s care, and supports caregivers’ roles in patients’ health and well-being, in part by facilitating their engagement in patients’ healthcare. And it can be used at any stage of serious illness, and along with curative or aggressive therapies.
Palliative care emphasises interpersonal communication to establish patient-caregiver-doctor collaborative decision making and mutual understanding of the goals of patients’ healthcare and their treatment preferences through end-of-life. Advance care directives are considered important for promoting patient autonomy and dignity at end-of-life. Yet only a fifth of US adults complete advance care directives, and much less so among disadvantaged and African American populations.
Palliative care also encourages patients to designate a proxy healthcare decision maker. The study population has low marriage rates and caregivers of more diverse role relations than legal definitions of next-of-kin. So, it is especially important for them to choose and formally document their designated healthcare decision makers.
One female study participant tearfully described her experience of her common-law husband’s end-of-life with AIDS-related dementia. She reported that she and his mother waited helplessly by his hospital bedside for a week as he lay in a coma, waiting for his 21-year-old son to be located to give doctors legal permission to remove him from kidney dialysis and ventilation machines. She said that she and his mother were certain he would never have wanted all the aggressive treatment he was given, and regretted his suffering for it.
Research to date suggests that palliative care in the US healthcare system can positively impact patient and caregiver depression and anxiety, quality of life, and patients’ healthcare costs, and even longevity of terminally ill persons.
Palliative care is especially relevant to the study population as they often have chronic pain and other complex multi-morbidities, high utilisation of acute care services and intensive treatments, and little clinical attention has been given to their quality of life. Thus, for HIV, it has been recommended that palliative care programmes primarily address chronic pain, and that palliative care principles be incorporated into routine clinical practice for HIV patient care at any illness stage.
In what way is your Affirm Care study of relevance to health policy on advance care planning?
The AFFIRM Care study period coincides with implementation of landmark US (Maryland) state legislation to promote advance care planning through Maryland Medical Orders for Life-Sustaining Treatment (MOLST). The legislation requires that MOLST forms be filled out by/for all hospitalised patients with serious health conditions and that these be used by care providers as direct medical orders. In the absence of MOLST forms, the default is usually aggressive end-of-life care. In practice, the legislation has been slow to implement, in part because there has been little education of the public, patients or healthcare providers. The present study will examine this process, explore patients’ understanding of the forms, and educational or training needs to improve their advance care planning and healthcare decision maker designation.
You have begun working with religious leaders as part of the study. Why is that important to promoting palliative care and advance care planning?
A significant proportion of AFFIRM study participants report a reluctance to engage in palliative care or advance care planning as they perceive that it shows a lack of faith in God to determine their fate. We have found that local faith leaders are highly supportive of palliative care and advance care planning and confirm its consistency with their religious doctrine, and thus may play a potential role in educating the public about it. They report that in the absence of patients’ advance care planning and designation of healthcare decision makers, they are frequently called on to make such decisions or mediate family disagreements about end-of-life care, a role which they felt they are ill-equipped to do. As part of the AFFIRM Care study and at the request of a pastor on our community advisory board, we convened a workshop for local African American faith leaders to learn about ways to link their congregants and health ministries to medical and behavioural health services, to link with their caregivers, and resources for promoting their community members’ palliative care and hospice use.
We are now in the process of developing and piloting an intervention that engages the patient population, their caregivers and healthcare providers, and local faith leaders in promoting chronic pain management and other forms of palliative care as well as advance care planning.
Dr Knowlton’s work focuses on the health experiences of minority groups. Her current project looks at the experiences of HIV-positive African Americans with a history of drug abuse.
- NIH: National Institute on Drug Abuse
- NIH: National Institute of Nursing Research
- Cynda Rushton, PhD
- Thomas J. Smith, MD
- Nancy Hutton, MD
- Jessica Merlin, MD
- Jennifer Wolfe, PhD
- Lee Bone, RN
- Mary Mitchell, PhD
Amy Knowlton is an expert on the role of support networks and caregiving relationships in healthcare and treatment adherence and its health impact among vulnerable populations with potentially stigmatising conditions. The research findings inform the development and testing of models of home- and community-based HIV care through end-of-life.
Amy Knowlton, ScD
Johns Hopkins Bloomberg School of Public Health
624 N. Broadway, Room 745
Baltimore, MD 21205
T: +1 410 502 5368