An Integrative Literature Review on Existing Education Programmes for the Improvement of QOL of PLHIV

Introduction

Enhancing the quality of life (QOL) of people living with HIV (PLHIV) remains a vital component of global health initiatives. Although life expectancy for PLHIV has increased dramatically due to medical treatment improvements, PLHIV continue to experience challenges associated with the virus [1-3]. However, there remains an indisputable need for holistic QOL programmes that address issues that have a negative effect on the well-being of PLHIV. These include environmental, psychological, spiritual and social needs as well as the level of independence and physical well-being of PLHIV, especially those taking antiretrovirals (ART) as they are essential for ensuring that PLHIV not only survive but thrive [4-6].

Accordingly, personalized education programmes are essential for improving the general well-being of PLHIV, affording them the skills to manage their condition properly and facilitating their social integration. Therefore, by means of a thorough examination of a wide range of studies on existing characteristics of education programmes used globally, this review contributes to the development of an education programme designed to enhance the QOL of PLHIV on ART. Furthermore, the review sought to inform the development of a holistic, accessible and inclusive educational programme that will empower PLHIV to lead fulfilling and healthy lives as well as lead to a change in behaviours.

Materials and Methods

This integrative literature review employed Whittemore and Knafl’s steps: i) problem identification; ii) literature search; iii) data evaluation; iv) data analysis; and v) presentation of the findings [7]. An integrative review method was considered appropriate for this study as it provided an overview of current knowledge as well as gaps in the existing programmes, which have contributed towards the development of an education programme designed to improve the QOL of PLHIV on ART. In addition, the integrative review method was believed to be the appropriate type of research review for this study because it affords the inclusion of different methodologies from experimental and non-experimental studies and employs data based on both empirical and theoretical work [8,9].

The researchers used a flowchart (Figure 1) to demonstrate the selection process for the articles used in this review. The critical appraised checklist for quantitative studies was employed using Bowling’s checklist (Table 2) and the quality appraisal checklist tool for qualitative studies used Pearson (Table 3) depicting the selection process and final number of selected articles [10,11].

Figure 1: Flowchart Depicting the Selection Process and Final Number of Selected Articles

                                     Table 1: The Quality Appraisal Checklist Tool for Qualitative Studies (11)

                                         Table 2: The Quality Appraisal Checklist Tool for Quantitative Studies (10)

Inclusion and Exclusion Criteria

In the literature search, articles and reports, which were relevant to the problem identified under step 1 of this review, were located [7]. A comprehensive search from January 2010 to July 2021 was conducted. It was hoped that this period would provide relevant articles and recent evidence. The time period was selected in accordance with the recent increase in HIV programmes in prevention, treatment, care and support. The selected period also reflects the rapid expansion of ART programmes worldwide and particularly in South Africa. In addition, there were no restrictions with regards to study design and sample size. When full texts were not available, a librarian was contacted at the University of the Western Cape to retrieve those articles. All studies in which a programme was developed were assessed for relevance. Only articles written in English were retrieved and no authors were contacted. Studies in which a programme was not designed or developed were excluded. Accordingly, those studies in which developed programmes were evaluated and those in which the implementation of a programme were discussed were excluded. In addition, there were no restrictions related to the setting or country in which studies were conducted. Furthermore, studies with mixed target populations in which HIV and other chronic health conditions were assessed were included because of the scarcity of developed programmes, specifically for HIV QOL only.

Literature Search

In the literature search, articles and reports, which were relevant to the problem identified under step 1 of this review, were located [7]. A comprehensive search from January 2010 until July 2021 was conducted on the following databases: MEDLINE, PUBMED, EBSCOhost, Scopus, Science Direct and WHO Global Health Library. It was hoped that this period would provide relevant articles and recent evidence. The time period was selected in accordance with the recent increase in HIV programmes in prevention, treatment, care and support. Furthermore, this period reflects the rapid expansion of ART programmes worldwide and particularly in South Africa. As noted previously, there were no restrictions on study design and sample size. When full texts were not available, a librarian was contacted at the University of the Western Cape to retrieve those articles.

After searching the various databases, 15 714 articles were initially extracted based on their titles and abstracts. However, 5 431 were removed as they were duplicates. The remaining 10 283 articles were screened by analyzing their titles and/or abstracts in accordance with the applicable search terms. After evaluating these abstracts, 10 235 articles were excluded for not meeting the inclusion criterion, namely, the development of a programme. Subsequently, the 52 remaining articles were examined of which 39 studies were excluded. Thus, 13 original articles were considered relevant for the literature review. As noted previously, this process is depicted in Figure 1.

Data Evaluation

According to Whitemore and Knafl, evaluating the quality of primary sources by employing the integrative review method in which diverse primary sources are included increases the complexity thereof [7]. The purpose of extraction and synthesis of data in this review was to acquire usable information to report findings related to the characteristics of an education programme. For example, of the 13 articles in this review, four employed a qualitative approach [12-15]. While two applied the intervention mapping and qualitative approach to develop their programmes [16,17] the other studies only used intervention mapping [16-20]. Three studies employed qualitative and quantitative approaches and one utilized a quantitative approach only [21-23,25].

The data extracted from each of the final articles were entered into a spread sheet to visualize any patterns and obtain an overview of the content thereof. This included authors, year of publication, setting, objective, study design, respondents and sample size, data collection, results, conclusion, limitations and recommendations (Table 4).

The focus of this integrative review was to acquire evidence from existing studies to realize a broad view of the stated question, which would assist the researcher to design education programme for the improvement of QOL of PLHIV on ART in the Johannesburg Metropole.

                                                                 Table 3: Summary of Reviewed Articles

Data Analysis

In this review, all the primary articles were read multiple times to obtain an overview of the content. Subsequently, the findings of each article were examined to determine if they were in accordance with the research question. A comparison of the articles revealed that while some elements thereof differed, others were similar. Accordingly, when patterns were identified, they were coded.

During this stage of the review, a data comparison involving the identification of themes and assembling of the data in relation to the identified themes and/or related subgroups was conducted (Table 5). In the final step of this review, which involved verifying the identified patterns, relationships and commonalities with the primary source data for accuracy, were drawn.

                                                                Table 4: Identified Themes and Number of Studies

Findings

Six main themes related to the characteristics of existing programmes emerged: needs assessment, programme objectives, theory-based methods and strategies, planning and development of the programme, programme implementation, and programme evaluation. The characteristics of the developed programmes differed in most studies, ranging from general to detailed programme development steps. While some studies included the programme contents, others did not. However, the general characteristics at the baseline phase were similar, including the final programme development phase. As noted previously, the six themes are presented in Table 4.

Demographics of Studies

Of the 13 articles, 4 were conducted in South Africa and the rest in Australia, Estonia, Nigeria, Thailand, USA, Switzerland and several countries in Europe. However, one study did not note the setting. While eight of the studies developed programmes for PLHIV, four studies developed programmes for other groups such as orphans and vulnerable children, a family-centered programme, young people 15 years and older, and people with multiple sclerosis [13-23]. One article comprised theoretical literature and included a detailed process on development of a programme [7].

Needs Assessment

Needs assessment was a common theme that emerged in the review. It appeared as though the programmes that comprised needs assessment were functional. This step of programme development was imperative so as to understand the perceptions and needs of the target populations in the various studies in this review. In addition, a needs assessment was conducted to inform future activities in their programmes and to explore whether the programmes would meet the needs of the target population under investigation. These needs of the various target groups guided and influenced the next step of programme development. This either involved the identification of the programme objectives or planning and programme development. The needs assessment step is important because it assists programme developers in determining what is preventing it from reaching its desired goals [7].

Programme Objectives

In this review, programme objectives appeared very early in the programme development phase, between the needs assessment and planning and programme development steps. However, the findings of this review revealed that almost half of the studies included programme objectives. Furthermore, three studies had more than one research objective [16, 19, 17].

Corbie-Smith et al. revealed that programme objectives are imperative for a programme to be successful [16]. Programme objectives ensure that programme developers acquire insights that are relevant, useful, and assist in creating strong, achievable overall goals of the identified problem. The findings of the review reveal that programme objectives help programme developers to narrow the focus of their programmes and key variables, and accordingly, guide them through the programme development steps [16,17,19,20]. One may deduce that the omission of these steps in programme development may contribute to a lack of focus in the programme development steps.

Theory-Based Methods and Strategies

Theory-based intervention methods and strategies in this review were linked to the learning objectives listed in step 2 [24]. The findings revealed that this step of programme development involved specifying intervention methods and practical strategies for achieving each learning objective (Corbie-Smith et al., 2012). Although only five studies included this step, it did not appear to be important. Studies that did not have theory-based intervention methods were successful. However, if this step is included in the programme development steps, it may assist significantly in achieving the programme objectives [16,19].

Planning and Development of the Programme

The findings revealed that this step integrated the needs assessment, programme objectives, theory-based methods and strategies into a comprehensive programme. Mevissen et al. reported that the methods and applications selected in step 3 were combined into the final programme [19].

The review also found that members of the linkage group were asked for feedback on the final programme structure, such as the Delphi techniques, the community for which it is designed, and service providers [18]. The findings further revealed that this step is imperative in programme development as planning reduces the risks of uncertainty. The review also found that this step contributes robustly to those that are required to implement the programme [19,17].

Programme Implementation

The findings of this review revealed that this step assists in ensuring a programme works [19]. The use of strategies to adopt and integrate the developed programme into clinical and community settings in order to enhance patient outcomes and benefit the health of communities for which they were designed was noted. Furthermore, the findings showed that the studies sought to understand the behaviours of healthcare professionals, caregivers, healthcare organizations, healthcare consumers, family members and policymakers as important influences on the adoption, implementation and sustainability of the developed programmes [19,17]. It may be concluded that if a programme is poorly implemented, its goals are unlikely to be achieved, and the results will not carry much significance [17].

Programme Evaluation

This step of the review involved a disciplined and systematic inquiry that was conducted to collect information about the activities, characteristics and outcomes of programmes that were developed and further make judgements thereof [19,17,23]. The findings of the review indicate that this was done to enhance the effectiveness of programmes and inform decisions about future programming [13,17]. It may be concluded that this final step is very important as it strengthens the quality of programmes and improves the outcomes for the target population.

Discussion

In this review, the characteristics of existing programmes were explored. Six themes emerged: needs assessment, programme objectives, theory based-methods and strategies, planning and development of the programme, programme implementation and programme evaluation. This integrative literature review revealed important steps to consider when developing a programme. Accordingly, it is imperative to consider these six themes to realize solid and successful programmes. However, theory- based intervention methods and strategies are not always used in successful programmes. Nonetheless, these six steps were employed in this review in developing an education programme for PLHIV on ART in the Johannesburg Metropole.

It is important to consider the context in which some of these studies were conducted, which may not be applicable to other settings. Some of the were conducted in Europe, Australia, Switzerland, Netherlands, Thailand, Estonia and USA, which have different cultural backgrounds to Nigeria and South Africa. Consequently, the beliefs, cultural values and religious views, which have may affect the QOL of PLHIV, may differ. Despite the different settings and studies conducted on the development of programmes, many of the themes were similar. However, there is a need to develop context specific education programmes, which will concur with the context and culture of a specific region in order to address the QOL in that region. One may deduce that contextualization is a characteristic of a good programme.

It is also imperative that the strengths and limitations of the results of the review need to be acknowledged. It is evident from the review that programmes with similar measured outcomes that already exist could be leveraged to create education programmes that result in consistent and permanent behaviours for PLHIV on ART. In addition, the development of an education programme may only be realized if there was a clear understating of existing characteristics, which led to the design of a context-based education programme for the improvement of QOL of PLHIV on ART.

Studys Limitations

This integrative literature review has a few limitations. The review demonstrated that there is a dearth of research on existing education programmes in all the databases that were searched. Thus, the researcher struggled to find generally accepted results on education programmes to improve QOL pf PLHIV on ART. The inclusion of other studies that focused on the development of programmes for other chronic diseases assisted in overcoming this limitation. However, the latter may not have been context specific for PLHIV on ART. Furthermore, if the exclusion criteria had not been as strict, the nature and results of this review may have been different. Nevertheless, the researcher found that all the reviewed articles were of high informational value, focused on the phenomenon of interest and were relevant to the aim of the study.

Conclusion

The findings of this review demonstrated that in the articles searched and reviewed, no programmes adequately addressed QOL. This implies that there is no uniform standard in addressing this phenomenon. However, the results revealed important steps to consider when developing a programme. Therefore, to realize a successful and solid programme, it is imperative to consider the six themes. It is also evident from the review that similar measured results from existing programmes can be used to develop education programmes that can contribute towards the improvement of QOL of PLHIV on ART.

Recommendations

It is imperative to explore the possibility of a wide-scale implementation of education programmes for QOL enhancement and testing in real life for usefulness and generalizability globally and in South Africa. In addition, there is a need to develop a context-specific education programme which will be in line with the context and culture of a specific region in order to address QOL in that region, considering that studies have been conducted in Austria, Estonia, USA, Nigeria and Thailand. Moreover, it may be essential to develop a specific instrument as QOL may be context- specific. The widespread development of education programmes designed to improve the QoL of PLHIV on ART is relatively new. The researcher is of the view that future studies should focus on this specific challenge. Finally, it is important to negotiate and establish joint appointments in which specialist nurses in practice with HIV research serve as promoters and co-promoters of improvement of QOL and not only with a clinical focus.

Production of Reference Gas Mixtures

1. González, M. E., et al. (2023). Mental health challenges among people living with HIV in the era of antiretroviral therapy: A comprehensive review. Global Health Research and Policy, 8(1), 10–20.
2. Kranzer, K., et al. (2021). Improving quality of life for people living with HIV: Current challenges and opportunities. Journal of HIV and AIDS, 25(1), 15–25.
3. Smith, L., & Thompson, J. (2022). The impact of ART on the quality of life of PLHIV: A systematic review. International Journal of HIV/AIDS, 14(2), 52–61.
4. López, M. P., & Martínez, R. J. (2024). Social determinants and their effect on the quality of life of PLHIV: A longitudinal study in Latin America. BMC Public Health, 24(1), 112–120.
5. Nguyen, V. M., et al. (2022). Addressing the long-term health and wellness needs of people living with HIV in the post-ART era. Journal of Clinical HIV Research, 15(4), 22–32.
6. Wang, X., et al. (2021). HIV-related stigma and its impact on the quality of life of PLHIV in urban settings. AIDS Care, 33(7), 857–864.
7. Whittemore, R., & Knafl, K. (2005). The integrative review: updated methodology. Journal of advanced nursing, 52(5), 546-553.
8. Anderson, S. R., Clarke, R. L., & Vella, E. M. (2023). A critical review of the integrative review process: Methodological advancements and practical challenges. Research in Nursing & Health, 46(1), 76–89.
9. Bennett, A. L., Thomas, S. M., & Green, J. E. (2022). Integrative review methods: A guide to best practices in systematic and qualitative synthesis. Journal of Research Methodology, 58(3), 257–275.
10. Bowling, A. (2009). Research methods in health: Investigating health and health services (3rd ed.). Open University Press.
11. Pearson, A. (2004). Balancing the evidence: Incorporating the synthesis of qualitative data into systematic reviews. JBI Reports, 2(2), 45–64.
12. Hersche, R., Weise, A., Michel, G., Kesselring, J., Barbero, M., & Kool, J. (2019). Development and preliminary evaluation of a 3-week inpatient energy management education program for people with multiple sclerosis-related fatigue. International Journal of MS Care, 21(6), 265–274.
13. Khumsaen, N., & Stephenson, R. (2017). Beliefs and perception about HIV/AIDS, self-efficacy, and HIV sexual risk behaviors among young Thai men who have sex with men. AIDS Education and Prevention, 29(2), 175–190.
14. Naicker, N., de Jager, P., Naidoo, S., & Mathee, A. (2016). Household factors associated with self-harm in Johannesburg, South African urban-poor households. PLOS ONE, 11(1), e0146239.
15. Visser, M., Finestone, M., Sikkema, K., Boeving-Allen, A., Ferreira, R., Eloff, I., & Forsyth, B. (2012). Development and piloting of a mother and child intervention to promoteresilience in young children of HIV-infected mothers in South Africa. Evaluation and program planning, 35(4), 491-500.
16. Corbie-Smith, G., Odeneye, E., Banks, B., Shandor Miles, M., & Roman Isler, M. (2013). Development of a multilevel intervention to increase HIV clinical trial participation among rural minorities. Health education & behavior, 40(3), 274- 285.
17. Nöstlinger, C., Bakeera-Kitaka, S., Buyze, J., Loos, J., & Buvé, A. (2015). Factors influencing social self-disclosure among adolescents living with HIV in Eastern Africa. AIDS care, 27(sup1), 36-46.
18. Laisaar, K. T., Uusküla, A., Sharma, A., DeHovitz, J. A., & Amico, K. R. (2013). Developing an adherence support intervention for patients on antiretroviral therapy in the context of the recent IDU-driven HIV/AIDS epidemic in Estonia. AIDS care, 25(7), 863-873.
19. Mevissen, L., Lievegoed, R., Seubert, A., & De Jongh,A. (2012). Treatment of PTSD in people with severe intellectual disabilities: A case series. Developmental Neurorehabilitation, 15(3), 223-232.
20. Millard, T., Dodson, S., McDonald, K., Klassen, K. M., Osborne, R. H., Battersby, M. W., ... & Elliott, J. H. (2018). The systematic development of a complex intervention: HealthMap, an online self-management support program for people with HIV. BMC infectious diseases, 18(1), 615.
21. Bello, T. K., Gericke, G. J., & MacIntyre, U. E. (2019). Development, implementation, and process evaluation of a theory-based nutrition education programme for adults living with HIV in Abeokuta, Nigeria. Frontiers in Public Health, 7, 30.
22. Bello, T. K., & Pillay, J. (2019). An evidence-based nutrition education programme for orphans and vulnerable children: protocol on the development of nutrition education intervention for orphans in Soweto, South Africa using mixed methods research. BMC Public Health, 19(1), 306.
23. Visser, M., Thurman, T. R., Spyrelis, A., Taylor, T. M., Nice,J. K., & Finestone, M. (2018). Development and formative evaluation of a family-centred adolescent HIV prevention programme in South Africa. Evaluation and program planning, 68, 124-134.
24. Eldredge, L. K. B., Markham, C. M., Ruiter, R. A., Fernández,M. E., Kok, G., & Parcel, G. S. (2016). Planning health promotion programs: an intervention mapping approach. John Wiley & Sons.
25. Reynolds, J. H., Knutson, M. G., Newman, K. B., Silverman, E. D., & Thompson, W. L. (2016). A road map for designing and implementing a biological monitoring program. Environmental Monitoring and Assessment, 188(7), 399.