Caregivers of Patients With HIV Have Both Positive, Negative Experiences

Informal caregivers of people living with HIV/AIDS (PLWHA) face numerous challenges, including psychological, physical, and economic challenges; however, many caregivers also reported positive developments in being a caregiver, according to a qualitative study published in Patient Preference and Adherence.

An estimated 39 million people were living with HIV and 30,000 reported deaths due to HIV at the end of 2022, making it a public health challenge across the globe. PLWHA often need long-term care from health care professionals and caregivers due to the chronic nature of HIV with widespread use of antiretroviral therapies. Informal caregivers are those who provide care to the patient and can be family members, friends, or other patients. This study aimed to collect data on the experiences and feelings on caring for PLWHA to provide a basis for intervention measures for these caregivers.

"They provide health-related, psychosocial and physical care for PLWHA, such as accompanying relatives to hospitals, administering medication, encouraging and spending time with PLWHA, cooking, bathing, and washing," the authors wrote. "They are the primary source of social support for PLWHA, and can improve medicine adherence of PLWHA."

HIV Virus | Image credit: artegorov3@gmail - stock.adobe.com

The outpatient clinics and wards of a tertiary hospital in Beijing, China, were where the data were collected. Data was gathered from August 2 to August 30, 2023. All participants needed to be aged 18 years and older, were the main caregiver for PLWHA, were able to communicate, and were willing to participate. Participants were excluded if they were receiving a salary for caregiving, had a serious physical or mental illness, were a caregiver of a newly diagnosed PLWHA, or were unwilling to give interviews.

Demographic characteristics were collected from all patients, including their relationship with the PLWHA and the duration of care. Researchers conducted all of the interviews and followed a guide to facilitate the conversation. All interviews took place over 20 to 60 minutes and were audio recorded.

There were 21 caregivers of PLWHA who were included in this study with a mean (SD) age of 44.14 (13.02) years. The majority (66.7%) were women. Family members made up 76.2% of the caregivers and 61% of the participants had no higher education level than high school. The 3 major themes that came out of the interviews were benefits from care, demands for caregiving capacity, and care burden experience.

Most caregivers felt psychological distress when faced with the diagnosis of HIV/AIDS and were also prone to anxiety and depression, along with other types of mental distress. They also had a fear of social discrimination or stigma on behalf of the PLWHA. Caregivers said that their moods were often reliant on the PLWHA and will constantly fluctuate. However, the longer that the patient has had the disease, the more stable their emotions were.

Fear of infection, concerns about discrimination, and worries about progression were among the factors that contributed to the psychological burden that caregivers felt. This fear of stigma also extended to themselves. Significant financial issues were also present in caregivers who cared for PLWHA. They were afraid of future medical expenses or losing resources. Some caregivers also reported a diminishing of their own physical health and social interactions.

In positive emotions when caring for PLWHA, some caregivers expressed that they had more intimacy with the patient and had more optimism and hope. Psychological distress was found to be alleviated by a strong support group of family, friends, medical staff, and social workers who helped the caregiver. Although some participants said that they didn’t know much about AIDS prior to the diagnosis of the patient, they learned more to care for their patient and to protect themselves.

Some participants claimed that they felt overwhelmed due to the lack of understanding on the approaches to transmission and the management of symptoms. Some caregivers were also not prepared for the PLWHA dealing with psychological issues such as anger, sleeplessness, hopelessness, and depression.

There were some limitations to this study. This study was conducted in a single center in Beijing, which could limit the generalizability. The caregivers were primarily the caregivers of patients who were hospitalized due to the length of the interview, which could have led to caregivers of more severe patients being included. This study also only included those who agreed and those with disorders were excluded.

The researchers concluded that the caregivers primarily experienced psychological, physical, social, and economic challenges while giving care to a PLWHA. However, there were some positives for the caregivers while treating the patient. The researchers recommended that caregivers be given equal attention for their challenging role of taking care of PLWHA and their own burdens.

"...this study suggests that while focusing on PLWHA, we should also pay attention their informal caregivers," they concluded. "And we advocate for a balanced understanding of the caregiver’s plight, advocating for policies that recognize and support their dual experience of burden and resilience."

Reference

Zhang Y, Liu M, Han J, Tian X, Xin Y. Beyond the burden: a qualitative inquiry into the experiences of Chinese informal caregivers for people living with HIV or AIDS. Patient Prefer Adherence. 2024:18;677-685. doi:10.2147/PPA.S454590