Improving Support and Education of Low-Income Baby Boomers Diagnosed with Chronic Hepatitis C Virus Infection Through Universal Screening
AIMS AND OBJECTIVES:
To identify support needs of low-income baby boomers recently diagnosed with chronic hepatitis C virus infection.
The U.S. Preventive Services Task Force has endorsed one-time screening of all baby boomers (born 1945-1965) for hepatitis C because 75% of the estimated 2-3 million persons with chronic infection are in this age range. We hypothesized that persons diagnosed by routine screening would have significant psycho-emotional, cognitive and healthcare challenges that need to be met by collaborative care and services from nurses and other healthcare personnel.
Qualitative descriptive study of data from three focus groups with predominantly minority participants (N = 16). Data were analyzed using qualitative content analysis, and transcribed data were categorized by three domains in a previously developed model and a new domain identified in this study. Frequencies of unique participants’ comments about each theme were calculated.
Elucidated domains were as follows: (i) psycho-emotional effects due to social stigma, shame, fear and dealing with risky behaviors; (ii) social effects due to concerns about infecting others; and (iii) cognitive deficits because of poor understanding about hepatitis C virus infection and its care. A new domain related to healthcare emerged reflecting the following themes: poor access to care, barriers to costly treatment, and navigating complex care for comorbidities. Despite these challenges, participants strongly endorsed universal baby boomer hepatitis C virus screening.
This study describes psycho-emotional and social challenges of people dealing with a hepatitis C diagnosis which are compounded by poor knowledge and barriers to supportive care.
RELEVANCE TO CLINICAL PRACTICE:
Nursing and other allied health personnel require structured support programs to assist older persons diagnosed with hepatitis C with addressing these common challenges with the ultimate goal of achieving a cure.
Overview of article
- This study aimed to identify support needs of low income baby boomers who were recently diagnosed with chronic hepatitis C virus infection (HCV)
Methods of article
- This study implemented a program after screening for HCV that was composed of education about HCV infection. Specifically, a bilingual case manager met with patients who were newly diagnosed and reviewed an interactive, low literacy, educational program in Spanish and English on an electronic tablet device to address: HCV epidemiology, transmission prevention, factors that can accelerate chronic HCV infection, and management/treatment strategies
- To evaluate the intervention’s effect, the research team conducted focus groups with participants. The interview guide included open-ended questions addressing key aspects of being diagnosed with HCV infection and living with this disease. The questions focused on participants’ experiences and challenges with their HCV infection diagnosis, interactions with family and friends, impact of daily life, treatment options and care for HCV
- Dominant themes that relate to psychological/emotional impact that arose from the focus group are: 1) Shame, stigma, and feeling of isolation; 2) Fear and sense of being overwhelmed upon diagnosis; 3) Concerns about social contact and transmitting the infection; 4) Support for universal baby boomer screening for HCV; and 5) Struggling with the idea that they got HCV due to risky behavior.
- Many of these psychological/emotional effects added to the burden of dealing with other chronic conditions (e.g., high blood pressure)
- A majority of participants reported lack of insurance as a significant barrier to care
- Over half of respondents also commented on having to stop/reduce alcohol consumption after diagnosis
- Least commonly, patients discussed a need for HCV education
- This study highlights an opportunity for healthcare providers to address unmet educational and support needs of baby boomers who will be diagnosed with chronic HCV infection through universal screening
- Key strategies to help patients with HCV include reducing stigma around how patients contract HCV, continuing universal screening, offering alcohol rehabilitation services, and providing more education and support for patients after diagnosis
- The study calls on nurses to lead the address of the aforementioned issues through education and support programs and by acting as a peer educator to community health workers
- Limitations to the study include lack of causality, small, nonrepresentative sample size, and the fact that some patients had already received education on HCV from community health workers