Experiences of Older People Living with Human Immunodeficiency Virus Comorbidity Attending Coordinated Healthcare Services
Article information
Abstract
Background
Older people living with human immunodeficiency virus (OPLWHIV) on antiretroviral therapy are aging and face an increased risk of non-communicable diseases. The burden is costly and demands sustainable care for HIV comorbidity. The aim is to understand the experiences of OPLWHIV comorbidity attending healthcare services.
Methods
The 28 reviewed articles focused on experiences of OPLWHIV comorbidity attending healthcare services. The scoping review employed content analysis. A literature search was conducted on databases like PubMed, EBSCOhost, Google Scholar, and Subnet. Articles were restricted to English and published between 2013 and 2024. The study population included 50–85 years old.
Results
OPLWHIV comorbidity needs standardized, coordinated, and resourced healthcare services because of the unique difficulties of older adults.
Conclusions
OPLWHIV comorbidity experienced difficulties accessing coordinated services addressing complex pharmacoeconomics and psycho-social issues in resourced primary health care institutions, with promotive and preventive care to strengthen the healthcare system.
INTRODUCTION
Over the past three decades, the achievement and accessibility of antiretroviral treatment (ART) resulted in a shift of HIV infection from a rapidly fatal condition to a chronic disease.1) It is estimated that the population of 50 years and older people living with human immunodeficiency virus (OPLWHIV) comorbidity is estimated to increase by 73% in countries like the Netherlands, Italy, and the United States by 2030; the increased life expectancy is attributed to the availability of ART.1-3) OPLWHIV who are 50 years old are considered older as compared to those at 50 years who are uninfected because they have challenges of accelerated aging, and they also develop geriatric syndrome and frailty earlier than uninfected people.4,5) Presently, OPLWHIV on ART in sub-Saharan Africa is faced with an increased risk of acquiring non-communicable diseases (NCDs) because they live longer.6-8) In Ethiopia, Kenya, and Zimbabwe, there is an increased incidence and prevalence of hypertension, and it is worse in countries like Ethiopia, where health education for aetiology and prevention is lacking.9,10)
NCDs have become a leading cause of morbidity and mortality in OPLWHIV in high-income settings in South Africa,11) and found to be indicating a correlation between measurable HIV viral load and non-communicable disease in OPLWHIV on ART.12) In addition, ART has been reported to be associated with a high prevalence of hypertension at 37.7% in patients with ART exposure against 12.7% in OPLWHIV who are blind to ART.9) HIV comorbidities that are common include hypertension, cardiovascular disease, diabetes, chronic renal disease, and osteoporotic bone fractures.13,14)
Psychiatric morbidity and mortality are also assuming an alarming epidemic dimension in OPLWHIV on ART; these psychiatric comorbidities appear to be generally under-recognized and under-treated by clinicians.15) Psychiatric conditions experienced by OPLWHIV on ART include but are not limited to depressive illness, generalised and mixed anxiety, and depression.16) Furthermore, issues of stigma, alcohol abuse, and mental disorders are reported to be found in this population, with an increase in conditions associated with depression.17)
Sex needs special attention due to differences presenting in the form of prevalence of comorbidities found in men and women. Sex hormones, genetic differences, social behavior, and the environment are leading causes of these nuances. Women have been shown to have more comorbidities with a high prevalence of anxiety disorders than men.18)
The compound triangle of HIV comorbidity and taking medication, together with ART and ageing, come together to act negatively on the body of older adults in cumulative ways and present their own set of difficulties, especially with drug-to-drug interaction (DDI).19) DDIs can significantly impact patient care and present a substantial opportunity cost for the healthcare system.20) The DDIs may result in increased exposure to co-administered drugs, precipitating drug toxicity and incidence of adverse reactions.21)
HIV comorbidity is becoming an economic burden to healthcare systems, and costs to care for OPLWHIV comorbidity are increasing as compared to the non-HIV population.12) Significant contributions to high incremental costs include ageing and multimorbidity. This analysis demonstrates an increase in comorbidity and economic burden of OPLWHIV compared to matched controls.14)
Services rendered for OPLWHIV comorbidity, as articulated by healthcare providers and patients, reflect the affective attitude, self-efficacy, follow-up visits, burden, socioeconomic issues, perceived effectiveness, and ethics of care.22) Healthcare professionals and patients agree that with integrated services, OPLWHIV comorbidity feels supported, which leads to improved well-being.23) Stigma, privacy, and confidentiality remain a challenge to OPLWHIV comorbidity, and there is great concern about added comorbidity.23-25) This challenge is experienced in primary health care (PHC) settings, where arrangements, comfort, movement from one point of care to another, freedom of discussion, fixing clinic appointments, and medicine adherence are becoming problems.26,27)
However, patients seem to be comfortable where services are integrated because they have the freedom to discuss other conditions with fellow patients; despite this positive feedback, non-HIV patients have mentioned being uncomfortable being seen among OPLWHIV in the same setting area.28) Adherence to clinic appointments has been reported to be improving in integrated services by patients living with HIV comorbidity. However, healthcare practitioners disputed the notion of improved adherence for OPLWHIV comorbidity despite patients being adamant that there is improvement in treatment adherence.29)
According to the integrated chronic disease management model introduced in April 2011 in South Africa, waiting time, one of six priority standards, remains a challenge in integrated services and standalone clinics.30) Patient dissatisfaction with integrated services is due to under-resourced facilities with a lack of staff, slow delivery of service, poor information, lack of chronic disease support programme, and poor information in a selected tertiary institution of South Africa was found to be fragmented and uncoordinated, patients experienced confusion and were overwhelmed by consultations and treatment.24)
Comprehensive diabetes care is not yet fully integrated in PHC clinics, and OPLWHIV and diabetes needing comprehensive diabetic treatment must attend their diabetic treatment at a tertiary hospital for care and treatment. Attending treatment in the tertiary hospital is due to the lack of standardisation in adopting the guidelines for chronic care integration.30) Uncoordinated care leads to challenges such as defaulting treatment, and practitioners also fail to know what other care the patients are receiving in other PHC settings.22) Socioeconomic factors challenge OPLWHIV comorbidity due to undeclared financial issues and family responsibilities. Costs accrued by patients in integrated services were perceived to be affordable because patients save on transport.31)
Studies in South Africa have reported that patients raised an issue about the shortage of medications they commonly experience, which forces them to buy medicines in case of stock-outs in clinics. Furthermore, healthcare providers revealed their ignorance of the socioeconomic challenges that patients face when navigating self-care and that they also care for others in the context of multimorbidity and structural vulnerabilities.22) The OPLWHIV comorbidity described experiencing difficulties associated with mismanagement or poor management of comorbidities, and patients are worried about adverse effects of comorbidity treatment to their well-established HIV management.23)
Healthcare provider training hinders the efficient and effective delivery of integrated healthcare services; patients have mentioned being satisfied by how services are delivered in one-stop-shop clinics, except for the scarcity of trained healthcare providers.32) Healthcare practitioners in standalone clinics are said to pay little attention to OPLWHIV comorbidity when seeking care.22,24,30) Age-related comorbidities have the potential to impact adherence to and retention in treatment negatively and could reverse the gains made by the expansion of the ART programme during the past decade.20)
The Joint United Nations Programme on HIV/AIDS (UNAIDS) 95-95-95 testing, treatment, and viral suppression targets highlight the need to ensure accessibility, availability, and affordability of safe quality care to prevent, diagnose, and treat HIV infections, co-infections, and comorbidities. There is a gap in documenting the interventions targeted at preventive, promotive, curative, and rehabilitative measures of age-related comorbidities among this vulnerable population.12,33) Even though the current HIV management programmes globally and in sub-Saharan Africa can be regarded as effective, only a few programs focus on the integration of services for older adults living with HIV and comorbidities. Since 2011, the South African government has admitted that HIV and NCD services require urgent integration into primary healthcare.20)
This scoping literature review aims to gain insight into the experiences of OPLWHIV comorbidity in integrated healthcare facilities. Integrating the management of chronic diseases and HIV can meaningfully save time and money, improve continuing engagements in the care of OPLWHIV comorbidity, and better the realization of the right to continuity of healthcare.34) Focusing on HIV comorbidity care for older adults would significantly improve their access to and experience of HIV care.12,34) The scoping review will contribute to the knowledge gap in health-science literature so that OPLWHIV comorbidity can be included in the key-priority population.
Evidence from the scoping review will be used to construct recommendations for HIV comorbidity policies on integrated management and the treatment of OPLWHIV comorbidity and standard operational procedures for the integrated management of chronic diseases.
Theoretical Framework
The comprehensive theory of integration uses the following constructs: integration and care integration, which have emerged as a priority in transforming healthcare delivery to improve care.35) The theory communicates efforts to plan, study, and evaluate the impact on the care process and outcomes. Studies have demonstrated that the comprehensive theory describes how integration structures, processes, and people across organizations might lead to integrated patient care and improved outcomes, including technical quality, efficiency, patient health, and patient and provider experience.
Perceptions of functional integration and clinical integration were related, yet perceived integration was associated with perceived effectiveness. This theory is relevant in ensuring that OPLWHIV comorbidities needs are met and services that are integrated with public health and community social services agencies will result in effective community healthcare management systems. Equity access to healthcare services: theory and evidence from the United Kingdom seek to raise awareness about the extent of inequity to access general practitioners, consultation, acute hospital care, mental health services, preventative medicine, and health promotion. This signifies the importance of well-coordinated services.36)
MATERIALS AND METHODS
Information Sources and Search Strategy
The proposed scoping review will be conducted in accordance with Arksey and O’Malley’s methodology37) for a scoping review. The framework was developed through team discussion upon reviewing the preliminary results. Grounded in global scientific and grey literature and structured using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping review (PRISMA-ScR) guidelines. A comprehensive search across various databases, including PubMed, EBSCOhost, Google Scholar, Subnet, McGraw-Hill-eBook Library, ProQuest or PQDT open, Sage-Online, Knowledge-Hub Department of Health, and ScienceDirect yielded relevant studies. Similar and synonym sets of keywords were employed for extraction from each database. The first set of keywords focused on access to healthcare among OLPWHIV comorbidity, including terms like "HIV comorbidity," "experiences in healthcare," "OPLWHIV comorbidity impact of multimorbidity," and "health challenges due to HIV comorbidity and ART." The second set of keywords pertained to psycho-social and economic conflict due to HIV comorbidity, healthcare challenges, coping mechanisms with antiretroviral treatment and other medications, and the impact of OPLWHIV comorbidity due to a lack of stakeholders.
To ensure the studies reflect the current situation and reality of OPLWHIV comorbidity in the chosen location, the search was restricted to English-language articles published between 2013 and March 2024. For inclusion, a study had to feature a keyword from the first set and a keyword from the second set in its title or abstract.
Eligibility Criteria
Studies that fit the following qualifying requirements were included:
1) The studies considered in this evaluation reviewed experiences of OPLWHIV comorbidity attending integrated healthcare services, models used for service integration, and studies that conducted scoping review protocol,
2) Selected population may range from 50–85 years old; 85 years selected because the geriatric age is from 75 years and above, and the geriatric population aged 75 and older differed from the HIV older population in terms of demographic and immune-virological characteristics, ART history, and current ART, and comorbidities.21)
3) Content recognition of OPLWHIV comorbidity experiences with integrated healthcare facilities.
4) Articles must be published in English to be eligible: articles published from 2013–2024.
5) Screening criteria were established, and duplicates were removed.
6) All peer-reviewed and grey literature were downloaded and printed. Data was screened manually; a screening guide was developed by two reviewers (D.H.S. and M.P.L.). During two screening levels, the title and abstract, articles were independently assessed by each reviewer and included if they were deemed relevant to the experience of OPLWHIV comorbidity. During the second level of screening (full-text relevance review), reviewers independently assessed each article to ascertain its relevance to the objective of the scoping review.38)
7) Discrepancies were resolved by discussion with a third reviewer.
8) Arksey and O’Malley’s framework37) followed four stages: identifying the research objectives, relevant studies, study selection, charting the data, collating, summarizing, and reporting the results.
Study Selection
The online studies extract was screened, reviewed, and examined. In studies that did not address the OPLWHIV without comorbidities, people living with HIV (PLHIV) younger than 40 years and those above 85 years were excluded. Articles that did not address the title and duplicates were excluded from the study. Therefore, the remaining 28 articles were selected based on their relevance and meeting the eligibility criteria indicated in (Fig. 1). An in-depth review of the references of some identified articles within the search yielded four additional articles that met the eligibility criteria.
Data Abstraction
The principal investigator extracted data by comparing information collected in the various studies. All selected studies meeting the inclusion criteria were utilised to outline the characteristics of the studies (e.g., a general description of the review method and disciplines). The principal investigator will independently read each article and extract the relevant data. Differences in abstraction will be resolved by discussion with the other authors. The authors will not formally appraise methodological quality. Including the country (i.e., Zimbabwe, South Africa, North Thailand, Britain, Taiwan, and European countries) where the study was conducted, the study design, objective, population, sample size, outcome, and control description (Table 1).7,9,10,12-14,17,19-21,23,24,26-28,30,32,39-49)
RESULTS
The results were reported in line with PRISMA-ScR, using qualitative content analysis by collating, summarising, and reporting results. The study represented experiences of OPLWHIV comorbidity attending coordinate services and how services are rendered for OPLWHIV comorbidity. Furthermore, the study investigated different types of diseases that are common in this population as well as how the population is coping with HIV comorbidity. Table 1 demonstrates and describes findings from studies that were reviewed by the investigators that highlight models of care from different countries and perceptions of OPLWHIV comorbidity, including perceptions of healthcare workers.
After multiple refinements, the investigators followed the thematic framework to present the findings. Thematic analysis was adopted as the method of analysis, using Caulfield’s method.50) The investigators familiarised themselves with the collected data and conducted the initial coding. From initial coding, the investigators generated themes that captured the key concepts. The investigators reviewed and refined the themes. After reaching the consensus, the investigators created a data chart to map the distribution of the agreed themes. The investigators came up with four themes: self-care, stigma, polypharmacy, and psychosocial and economic issues. Lack of resources in PHC facilities, health promotion and wellness management, and lastly, system strengthening and support.
Theme 1: Self-care, Stigma, Polypharmacy, Psychosocial and Economic Issues
Pharmacoeconomics and psychosocial issues
OPLWHIV experiences challenges of comorbidities, social stigma, psychological challenges, DDI, and economic challenges. There is a need for the inclusion of policy reviews, training and development of healthcare practitioners, financial support, human resources, and infrastructure improvement to mitigate the risk associated with side effects of other conditions.23) These services will address the challenge of judgemental, inequal service delivery faced by OLPWHIV comorbidities.26) A sizeable number of participants are unemployed and report an income of plus or minus 1,000 Rands to 2,000 Rands monthly; participants older than 60 are on social grants. Household income and social grants are usually insufficient to sustain participants’ and families’ needs.24) Mitigating the risk of polypharmacy and medication-related problems and ensuring a safe transition to geriatric age ≥60 years, according to the World Health Organization; in OPLWHIV specifically, it will be 50 years and above, which will require a multidisciplinary approach to be supported by service integration.20)
Theme 2: Lack of Resources in PHC Facilities
PHC resource constraints
Since the adoption of the integrated chronic disease management model, challenges remain that hinder the proper delivery of HIV chronic comorbidity care. The three outcomes of the model are under-resourced facilities, the model is poorly adapted, and the Health Professions Council’s (HPCs) capacity to implement the model. Again, management’s inability to support, capacitate and standardise the model restrains productivity and progress. Other factors contributing to these challenges are overburdened facilities and a staff shortage.24) These difficulties are experienced by both patients and healthcare workers equally. Lack of resources in PHC facilities in South Africa is witnessed in most healthcare programmes, e.g., EPI, Mother and Child, etc. This challenge makes it difficult to provide comprehensive care, which was proved by the most recent audit of the quality of care for diabetes. Operational deficiencies negatively impact patient satisfaction, and these deficiencies are projected in some empirical studies conducted in South Africa.26)
Theme 3: Health Promotion and Wellness Management
First level healthcare
Patients also lack knowledge of chronic conditions, their treatment, and the prevention of diseases. Most studies reported that, generally, in busy healthcare departments, patients rarely receive an opportunity for health education about medication or any lifestyle modification.22) Furthermore, the information is not tailored to address patients’ individual needs, specifically their social and economic needs. This situation leads to uncertainty among patients about what is expected of them, and patients are often not included in decision-making.22) These studies show how patients, even though from different contexts, expressed a lack of confidence in undertaking self-care.
Theme 4: System Strengthening and Support
Health system functionality
The geriatric HIV population is emerging and highlights the burden and challenges of this geriatric HIV population, who, despite more comorbidities and more advanced HIV infection, achieve a similarly high rate of virologic suppression than the older population. A systematic multidisciplinary approach involving general practitioners, infectiologists, geriatricians, and pharmacists should be developed to face the incoming challenge of the HIV-infected population advancing to the geriatric age.42) The OPLWHIV comorbidities have stated how the care provided to them should include care-based approaches that address multiple health issues they are experiencing. Again, participants further described how coordinated colocation of services, co-administration of medication, and coordinated dispensing facilitated greater ease and confidence in their treatment and care.23)
Appraised studies agree on the following revealed positive outcomes towards integrated care delivery models, satisfaction with how services are coordinated, which leads to adherence to treatment and retention to care by OPLWHIV comorbidity, freedom of movement within the coordinated services, good relationships among patients on their health status. Multi-condition health education, cost savings, early detection of undiagnosed conditions. On the other hand, a number of challenges were highlighted, such as long waiting times, lack of privacy due to infrastructural limitations, lack of staff training, and the use of different colour codes for different conditions raised as a challenge because of fear of being stigmatized, especially for OPLWHIV. Again, complexities involved in implementing coordinated services, complex management, and training needed for implementing integrated services.
The poor involvement of clinical leadership and negative staff behaviour towards integrated models all lead to difficulty in the sustainability and scale-up of the models. Literature indicates a limited number of studies on models of care in developing countries and long-term care settings and significantly insufficient knowledge of the role of family, friends, and peers in supporting geriatric care for individuals living with HIV comorbidity. It has been reported in several studies that there is limited evidence of integrated healthcare services for OPLWHIV comorbidity of NCDs in sub-Saharan Africa, more especially data on long-term outcomes of care for OPLWHIV comorbidity. Further research is needed to update this scoping review through the conduct of a systematic review.
DISCUSSION
This scoping review focuses primarily on the experiences, challenges, and services rendered for OPLWHIV comorbidity.
Older adults have been more exposed to the third regimen of antiretrovirals, including the oldest protein inhibitors adverse to their metabolic syndrome and increasing cardiovascular risk and thymidine analogues responsible for lipoatrophy and mitochondrial toxicity. A multidisciplinary approach is recommended for ART and other comorbidities management for older patients, particularly the use of geriatricians.42) Findings indicate that patients’ challenges are self-care, stigma, polypharmacy, and psychosocial and economic issues. Patients also have minimal knowledge of chronic conditions, treatment, and disease prevention. Poor education and training and no clear uniform guidelines across the healthcare system compromise the successful delivery and integration of HIV chronic comorbidity care. Other factors that contribute to these challenges are overburdened healthcare facilities and staff shortages. These difficulties are experienced by both patients and healthcare workers equally.22)
Lack of resources, the common hindrance of healthcare service coordination includes the following even though not limited to the said barriers of delivering proper care, which include a lack of functional equipment, e.g., blood pressure machines, inadequate supply of pre-packed medicines in general, and additional workload to providers for healthcare services, staff shortages, and work overload are blocking the integration of HIV/NCDs. Other barriers include systems barriers such as well-established health information systems, lack of economic resources, and other resources as well as infrastructure.26,50)
Health promotion and wellness management. Several OPLWHIV were diagnosed with hypertension and on anti-hypertensive medication. This group of patients had poor knowledge of treatment and control of the medical condition. It has also been established that a sizeable number of patients do not know the normal and abnormal blood pressure values, contributing to poor knowledge of treatments.26) There is also more acceptance of hypertension than HIV because of the stigma attached to HIV, as hypertension is accepted as a chronic illness. Patients appear to be fearful of the side effects of hypertension as well as its complications, such as stroke or mortality. NCDs do not receive the same quality of care as HIV diagnosis.41)
System strengthening and support: there are models of support that various authors, such as collaboration and integration of care, organisation of geriatric care, and support of holistic care, have recommended.25) Service integration is advantageous for patients because it saves time and money. A single healthcare provider delivers better care than multiple providers. The anonymity of HIV diagnosis may be better maintained in an integrated service. However, some patients prefer attending different clinics to hide HIV diagnosis because of the stigma attached to the disease. The integrated services are associated with less specialised care for OPLWHIV Comorbidity.28)
A theoretical framework for a comprehensive theory of integration indicates that integration has emerged as a priority in transforming healthcare delivery.35) Equity of access to healthcare services, a theory and evidence from the United Kingdom, explores the extent of inequity to access general practitioners, consultancy, acute hospital care, mental health services, preventative medicine, and health promotion. Thus, a theoretical framework that includes competencies, philosophy, and organization is essential to advance the integration of services to ensure proper coordination.36)
International studies like those in Botswana also communicate these findings. Community resources/support systems, which form part of informal care settings, have been identified as pertinent to chronic care if they can be formally linked to healthcare systems. However, health policy and practice overlook these community resources/support. It is important to realise the need for collaboration of formal and informal care settings and their role in balancing patients’ family needs and personal needs in the context of chronic illness and structural vulnerabilities.24)
Implications for Interventions
Providing integrated patient-centered care that addresses both HIV and other comorbidities will address several difficulties experienced by healthcare users and providers. Chronic care models that consider the local context and socioeconomic conditions will be helpful in implementing comprehensive integrated services. There is a need for a clear definition of integrated healthcare services to ensure well-functioning healthcare and improve the healthcare provision of patients with multimorbidity’s. Service integration is coordinated to ensure patients receive care that addresses all their disease issues. Coordinated communication will improve communication across all stakeholders in health systems and clinics. The latter will prevent or minimise conflicting recommendations.
Integrated healthcare services using health promotion strategies, including health literacy and behavior change to ensure self-care, will address socioeconomic issues, and improve access to healthcare for OPLWHIV comorbidities. These strategies are key to improved positive health outcomes and increased wellness among patients. The different service integration models provide a platform for systematic thinking to efficiently address the huge burden of chronic diseases. Healthcare teams will effectively and efficiently provide comprehensive and holistic patient care and introduce preventive and curative measures to improve health and well-being.
Conclusion
There is a dire need to strengthen, standardise, and capacitate healthcare providers and provide health education to patients through health promotion activities in implementing the integrated model in healthcare centers. Furthermore, the activities of PHCs to provide integrated chronic treatment care will be continuously monitored and evaluated against the desired outcomes of the models. Socioeconomic factors play a significant role in diseases and maintaining health, demonstrating how stress and distress contribute to chronic diseases. Patients’ challenges also include having to take care of sick family members instead of managing their own chronic illnesses.
Limitations
One of the review’s weaknesses was that its focus was limited to experiences of OPLWHIV comorbidity. The scoping review included only English-language articles and papers published in languages other than English, which were not considered, which would have affected the review. The focus of the scoping review is to provide breadth rather than depth of information on this topic. Other limitations include language barriers since the investigators included studies published in English, which might have excluded relevant studies in other languages.
Notes
The authors thank the South African University Capacity Development Programme and the Vaal University of Technology Research Directorate.
CONFLICT OF INTEREST
The researchers claim no conflicts of interest.
FUNDING
None.
AUTHOR CONTRIBUTIONS
Conceptualization, DHS; Data curation, DHS; Investigation, DHS, MPL; Methodology, Project administration, DHS; Supervision, MPL, MM; Writing–original draft, DHS, MPL; Writing–review & editing, DHS, MPL, MM.