Abstract
Background
The understanding of older persons with non-communicable diseases (NCDs) regarding health well-being is paramount and can translate to increased self-efficiency, independence, and enhanced well-being. However, little is known about older persons' understanding of the concept of health-related quality of life (HRQoL) in Uganda. The study explored perceptions and unveiled understanding of older persons with NCDs on HRQoL in central Uganda.
Methods
This exploratory qualitative study design involved 23 participants recruited from selected Primary healthcare facilities in Central Uganda. Thematic analysis using an inductive approach generated themes that informed the study's qualitative findings.
Results
The study highlighted the physical domain as a key component of HRQoL, encompassing holistic well-being, lifestyle modification, and financial stability. To promote well-being and support a healthy aging journey, it is essential to adopt a person-centered approach that aligns with the perceptions of older adults on HRQoL.
Author Contributions
Copyright © 2024 Atim Fiona, et al
This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Competing interests
The author (s) declare no potential conflict of interest concerning the research, authorship, and publication of the article.
Citation:
Introduction
Health-related quality of life (HRQoL) is a crucial point of observation in public health that gained momentum in the last decade. HRQoL is a significant prognostic indicator, used to measure and identify health issues linked to physical and mental dysfunctions 1. Literature shows that older persons live longer due to the increased life expectancy. However, they face enormous chronic conditions 2. Understanding how older individuals perceive HRQoL is crucial for guiding evidence-based strategies to improve physical and mental well-being. Assessing these perceptions is essential for shaping health policy frameworks 2, 3. Few studies have explored older individuals' perceptions of HRQoL, and none have specifically focused on those with non-communicable diseases (NCDS).
Additionally, studies have centered on self-reported HRQoL without paying attention to the older person's understanding of HRQoL concept 3, 4. The current study aimed to explore HRQoL perceptions among older persons with non-communicable to suggest strategies to enhance health well-being.
The World Health Organization defined HRQOL as an individual’s perception of their position in life in the context of the culture, and value systems in which they live and to their goals, expectations, standards, and concerns 5. Hernanadez-Segura et al., (2016) affirm that HRQOL has been conceptualized as a global tool that is used to assess the effects of a health condition of interest 6 and has been used to measure the well-being of people, most especially elderly persons with Chronic conditions 7. HRQOL has been perceived as an individual’s or group's perceived physical and mental health over time 8, 9 and is perceived as a good measure of assessing the efficacy of strategies such as health interventions, health care, and public policy 9, 10. HRQOL was developed on functionalism and reflects the vital aspect of assessing and treating and not merely focusing on the biological, but also the psychological and social factors influencing the health status of individuals 9.
The concept of HRQOL encompassing the physical and mental domains is an important indicator of improved access to medical care and attention among the elderly 9. Self-perceptions about aging and HRQOL are key issues that need to be explored by healthcare workers during clinical sessions with the elderly 9. Studies conducted in developed countries (United States, Switzerland, China, Slovenia, and Turkey) indicate that HRQOL is a global phenomenon that should be explored more to facilitate the inauguration of mechanisms to improve older persons’ well-being 4, 8, 11. The literature review reveals a clear gap in understanding HRQoL among older individuals with non-communicable diseases.
Non-communicable diseases pose a global challenge and are responsible for 63% of deaths globally 2, 12. Annually, NCDs are responsible for 41 million deaths 12, 13, 2. Despite its strategic component to alleviate NCDs, morbidity and mortality data indicate the rising impact of NCDs in low-resource countries where 80% of deaths are due to cardiovascular diseases 14. NCDs have long-term effects due to their duration, and these are further precipitated by environmental, physical, behavioral, and genetic factors 12, 13, it is therefore paramount to assess the perceptions of older persons with NCDs on HRQoL to design strategies that can help curb the negative impacts of NCDs on HRQoL.
In a low-income country like Uganda, the situation is particularly challenging. Overall, the prevalence of poor HRQoL in Central Uganda Luwero and Nakaseke Districts was estimated at 52% 15, a figure close to the national prevalence of 59.6% 16. Poor HRQoL exacerbates unhealthy days, limits activities, and elevates health symptoms among older persons with NCDs in these districts. This high prevalence is likely associated with the significant burden of non-communicable diseases (NCDs) among older individuals in Central Uganda, which has been reported at 28.5% 17, 18. The lack of studies examining HRQoL perceptions among older persons with NCDs in Uganda further prompted the need for this study.
Methodology
This was an exploratory qualitative study design conducted between January and February 2023. The study was conducted in Luwero and Nakaseke districts in central Uganda. The districts were purposively selected based on the high prevalence of NCDs registered in Nakaseke District in 2015, which was projected at 28.5% 18, 19, 20, a prevalence higher than the national prevalence of NCD of 27%. The study employed a focus group discussion (FGD) method of data collection, a total of three FGDs consisting of 7-8 older persons in each group (both females & males) were conducted. The FGDs lasted between 45 to 60 minutes and were audio-recorded.
Participants for the FGD were selected purposively since a specific category/characteristic of elderly persons was preferred (those aged 65 years and above, residents, who consented to participate, and those screened and confirmed to have one or more chronic diseases/NCDs). Purposive sampling was preferred because it ensured the inclusion of participants who were knowledgeable and experienced 21, hence providing in-depth insights into the qualitative inquiry. The authors used a screening log to select the study participants, and only those who met the inclusion criteria were included in the study, and no dropout cases were recorded. Using the screening log, the authors reached out to 57 individuals, and of these, only 23 met the inclusion criteria. Additionally, participants who were recruited in the study were reimbursed for their time with 10,000 shillings and refreshments were provided after the sessions.
For each FGD group, a trained research assistant served as a moderator and another as a researcher. A written FGD guide developed and pilot-tested by the researchers was used. The phrasing was modified after pilot testing without changing the original meaning of the content. Participants for the FGD were older persons aged 65 years and above screened and confirmed NCD patients attending PHC facilities in selected facilities in Nakaseke (Semuto Health Center IV) and Luwero (Kalagala Health Center IV) districts. FGDs were conducted following an interview guide, and all participants provided written consent before data collection. Confidentiality and privacy were ensured.
Participants were informed about the objective of the study which was to explore perceptions of HRQoL. Recruitment of additional FGD groups stopped once transcripts was reviewed and saturation of themes was obtained 22. Ethical review and approval were sought from the Clarke International University Research Ethics Committee (CIUREC) under protocol no: CLARKE-2022-404 and clearance to conduct the study was obtained from the Uganda National Council for Science and Technology (UNCST) under study reference no: SS1528ES. Participants were informed about the dissemination of the study findings through publication which they consented to.
Data collected were entered into the Nvivo software version 20.2 to generate codes. Focus group discussions were coded, and themes were generated. Thematic analysis using an inductive approach generated themes that informed the study's qualitative findings.
Results
Demographic characteristics of the respondents
This section presents the results of the qualitative study done among 23 study participants who constituted focus group discussions (FGDs). Of the 23 participants, 13 (56.7%) were aged between 65-74 years, 15 (65%) were females, and 10(43.5%) were Catholics as indicated in Table 1 (see appendix).
Table 1. Demographic characteristics of the study respondents for FGD| Variable | Category | |||
| Age | 65-74 | 75-84 | 85-95 | |
| Frequency | 13(57) | 7(30) | 3(13) | |
| Sex | Female | Male | ||
| Frequency | 15(65) | 8(35) | ||
| Religion | Catholics | Protestants | Muslims | Born again |
| Frequency | 10(43.5) | 7(30.4) | 4(17.4) | 2(8.7) |
Subjective understanding of older persons on health-related quality of life
Through consensus, 14 codes were generated, and 3 codes related to HRQoL were categorized into themes. The 3 themes that emerged as older persons subjectively relayed their understanding of HRQoL: (1) holistic well-being, (2) lifestyle modification, (3) and financial stability. Themes with the corresponding verbatims in quotes were generated (see Table 2 in the appendix section) as described below with narrative examples.
Table 2. Additional Representative quotes| Theme | Representation |
|---|---|
| Holistic well-being | “My ability to interact freely with my family and community, being healthy, having no disease, ability to support myself physically defines my HRQoL” (FGD-3) |
| “Having energy, absence of pain, participation in household chaos and garden work” (FGD-2) | |
| “To me, HRQoL means having good health, no part of the body hurting, eating well, having a good quality of sleep” (FGD-9) | |
| Lifestyle Modification | “When l do everything required of me to keep healthy on time like taking my medicine, eating food, and staying away from things that will prevent the medication l take to work” (FGD-1) |
| “I think it implies changing from unhealthy ways of life to more healthy ones” (FGD-3) | |
| Financial stability | “Having the money to meet my daily needs” (FGD-2) |
| “On my side, having what it takes to maintain a good life, like having a daily source of income defines my HRQoL” (FGD-1) |
Theme 1: Holistic Well-being
Holistic well-being involves the complete state of health, including physical, mental, and social well-being. Participants noted that being physically healthy and able to perform daily duties, maintaining good mental health described and informed by the absence of worries and stress, and being supported and loved by family members: the majority of the participants pointed out support from a spouse and biological children, and having access to social health as the important aspects of HRQoL. The participants viewed HRQoL as having basic health, access to mental and physical, and social amenities. To some participants having access to medical care was reassuring.
“Health-related quality of life to me means being happy, no pain, no stress, good food, and support from family” (FGD-1)
“Being healthy, having access to medical treatment, absence of disease, pain, care from my family, and having a community that relates well with people” (FGD-14)
“Having what it takes to improve my life, Medicine, house, food, and having enough money to earn a living” (FGD-20)
Theme 2: Lifestyle Modification
The participants highlighted the importance of healthy living through behavioral change like regulating one's diet, refraining from drug abuse, and engaging in physical activities like exercising and weight management. A common thought was as easy as “adjustments of harmful habits”
“I perceive health-related quality of life to be things that l do that make me healthy like avoiding alcohol intake and eating foods low in fats” (FGD_6)
“To me, l perceive health-related quality of life as being healthy, absence of disease, absence of pain, and care from my family. (FGD-4)”
“For me, it’s taking a long period without visiting the health facility for any ailment that implies health-related quality of life (FGD-8)
Theme 3: Financial Stability
Participants discussed the importance of finances in enhancing good HRQoL. The majority of the participants asserted that money helps to facilitate transport, and buying medication in the event there is a drug stockout, a common phenomenon in public health facilities in Uganda. Financial stability was centered on good financial status and enhanced access to healthcare. Participants perceived financial status to have a positive impact on both individual and local economic development through the operation of small businesses and farming and went ahead to state that having access to finances from relatives, friends, and financial institutions through development loans and government funds for senior citizens improves HRQoL,
“Receiving constant assistance in the form of money from family, relatives, and friends makes me worry less. Having money promotes happiness, when l have money, I feel very healthy and active (FGD-I2)
“Having access to government funds and pension as a retired senior citizen would define my health-related quality of life because l can use the money to start a business and be able to acquire assets like land” (FGD-7)
Discussion
The study used a qualitative approach to understand older people’s perceptions of HRQoL. The study found understanding of HRQoL to be characterized by holistic well-being, lifestyle modification, and financial stability. The study highlighted the physical domain as the key component of HRQoL, indicating that older individuals view physical well-being as a crucial factor in promoting overall well-being. Findings from previous studies are in line with the current findings where the majority highlighted the physical component of HRQoL to influence well-being compared to the mental component 11, 12, 23, 24. Other studies identified common themes related to older adults' perceptions of HRQoL, including anxiety stemming from emotional experiences, a strong desire to regain physical function, the impact of health on quality of life through social interactions, socio-economic factors such as high income and education levels, and personal experiences of physical and mental health status 4, 24. Furthermore, self-efficacy, numeracy in health literacy, physical health-promoting behavior, perceived support, and a lesser frequency of comorbidities were themes from a study conducted by 24.
Findings from another study are divergent from the current findings, with poorer self-perceptions of HRQOL among elderly persons in rural areas being recorded compared to their counterparts in urban areas 11. A similar study conducted in Iran found self-reported HRQOL among older persons to be poor and characterized by poor mental health status 25. A discrepancy in findings from middle-income and low-income countries indicates that HRQOL was perceived to be driven by poverty, lack of social support, psychological status, and negative self-perceptions of aging 16, 26. A study by Gumikiriza-Onoria et al. (2022) in Uganda found that older persons had positive perceptions of HRQoL, aligning with the current findings where only positive HRQoL was recorded 10. However, despite these positive perceptions, the previous study revealed that 86% of respondents still had poor HRQoL when assessed quantitatively.
Several factors that influence older adults' perceptions of their health-related quality of life (HRQOL) include inadequate social and financial support, poor housing conditions, and loneliness 10, 4. The discrepancies in findings between developed and developing countries may be due to the more favorable socio-economic conditions and greater development of the aging population in developed countries. Additionally, older adults in developed countries often experience significant mental and psychological issues, largely due to loneliness, as many live alone, which adversely affects their mental health.
Plotnikoff et al., (2015) argue that regular physical activity, and improved health interventions like maintaining a healthy body weight and refraining from a sedentary lifestyle influence health decisively and promote HRQoL 27. Addressing both the physical and mental health aspects of HRQoL begins with the healthcare workers' knowledge and inquiry 28. Understanding older persons' perceptions of HRQoL helps to design health interventions targeting improvements in HRQoL. At the same time, it shows that older persons know what HRQoL implies, which was one of the main focus of the current study. In addition to informing primary healthcare-based geriatric patient care, the study’s findings may be most applicable in HRQoL status evaluations in the future.
The current study reported a positive perception of HRQoL among older persons, but it had some limitations. First, participants were recruited from PHC facilities in two selected districts of central Uganda. Therefore, the limited sample size and sampling methods limit generalizability to a larger population in central Uganda. Secondly, the focus group guide was well-articulated hindering leading questions. However, HRQoL being a new term to older participants, some responses may have been steered by the carefully designed question guide. Thirdly, since the participants gave their subjective opinions concerning HRQoL, it is possible that some participants gave socially desirable responses to the moderators to please them. Despite these limitations, FGDs are an important qualitative research approach to evaluate concepts, such as how older persons conceptualize HRQoL.
Conclusions and Recommendations
The participants' perceptions towards HRQoL were positively characterized by holistic well-being, lifestyle modification, and financial stability. Healthcare workers and policymakers should involve older persons in the planning and implementing interventions and policies that aim at creating awareness of HRQoL to enhance understanding of HRQoL concept to foster good health practices. Additionally, more studies need to be done to ascertain where subjective knowledge of the study participants influences HRQoL outcomes. There is a need to embrace a person-centered approach based on the perceptions of older persons on HRQoL, which has the potential to improve well-being and enhance a healthy aging journey. Given the limited qualitative research on aging, specifically perceptions of older persons with NCDs, more studies must be done to enrich the scanty body of literature.
Ethical considerations
This study was reviewed and approved by the Clarke International University Research Ethics [Committee (CIUREC) approval number CLARKE-2022-404 and the National Council for Science and Technology (UNCST) clearance number SSI528ES. All participants consented to the study before participation.
Acknowledgment
The authors would like to acknowledge the study participants for accepting to participate in the study and MEDRVIX for accepting to present a preprint version of this paper which can be accessed using this link [https://www.medrxiv.org/content/10.1101/2024.07.19.24310704v1]
Members Contribution
All members actively contributed to the study. AF conceptualized the study and participated in writing the proposal, analysis, and report writing, NR participated in data analysis and manuscript writing; CN participated in data analysis; FR and CL guided the manuscript writing process and content; FOM and RCN supervised the entire research process as the study supervisors.
Funding Source
The study received funding and would like to acknowledge the Fogarty International Centre of the National Institutes of Health, the U.S. Department of State’s office of the U.S Global AIDS Coordinator and Health Diplomacy (S/GAC), and President’s Emergency Plan for AIDS Relief (PEPFAR)
” Research reported in this manuscript was supported by the Fogarty International Centre of the National Institutes of Health, U.S. Department of State’s office of the U.S Global AIDS Coordinator and Health Diplomacy (S/GAC), and President’s Emergency Plan for AIDS Relief (PEPFAR) under Award number 1R25TW011213. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health”
Definition of key terms
CDC - Centre for Disease Control and Prevention
HRQoL - Health-related Quality of Life
NCDs - Non-communicable Diseases
PHC - Primary Healthcare
References
- 1.Haraldstad K, Wahl A, Andenæs R, Andersen J R, Andersen M H et al. (2019) A systematic review of quality of life research in medicine and health sciences. Qual Life Res [Internet]. Available from: 28(10), 2641-50.
- 3.Jalenques I, Rondepierre F, Rachez C, Lauron S, Guiguet-Auclair C. (2020) Health-related quality of life among community-dwelling people aged 80 years and over: A cross-sectional study in France. Health Qual Life Outcomes. 18(1), 1-24.
- 4.Dresden S M, McCarthy D M, Engel K G, Courtney D M.Perceptions and expectations of health-related quality of life among geriatric patients seeking emergency care: A qualitative study. , BMC Geriatr 19(1), 1-8.
- 5.Pankewycz O G, Gross C R, Laftavi M R, Gruessner A C. (2023) Quality of Life. Transplant Pancreas Second Ed. 1039-52.
- 6.Hernández-Segura N, Marcos-Delgado A, Pinto-Carral A, Fernández-Villa T, Molina A J. (2022) Health-Related Quality of Life (HRQOL) Instruments and Mobility: A Systematic Review. Int J Environ Res Public Health.
- 7.Emily J Roemer, Kesley L West, Jessica B Northrup, Jana M Iverson, Cho. (2016) HHS Public Access. Physiol Behav. 176(1), 100-106.
- 8.Wang Y, Wu Y, Chu H, Xu Z, Sun X et al. (2023) Association between Health-Related Quality of Life and Access to Chronic Disease Management by Primary Care Facilities in Mainland China: A Cross-Sectional Study. Int J Environ Res Public Health. 20-5.
- 9.Unless R, Act P, Rose W, If T, Rose W. (2016) Health, Health-Related Quality of Life, and Quality of Life: What is the Difference?.
- 10.Gumikiriza-onoria J L, Odokonyero R, Giordani B, Akena D, Mwesiga E et al. (2022) An Association of Quality of Life and Ageing Perceptions among Community Dwelling Older Adults in Uganda. 8-4.
- 11.Liu N, Andrew N E, Cadilhac D A, Yu X, Li Z et al. (2020) Health-related quality of life among elderly individuals living alone in an urban area of Shaanxi Province, China: a cross-sectional study. J Int Med Res. 48-4.
- 12.Gyasi R M, Phillips D R, Meeks S. (2020) Aging and the Rising Burden of Noncommunicable Diseases in Sub-Saharan Africa and other Low- A nd Middle-Income Countries: A Call for Holistic Action. Gerontologist. 60(5), 806-11.
- 13.Team E S. (2020) Mid-point evaluation of the implementation of the WHO global action plan for the prevention and control of noncommunicable Volume 1 Report Corporate evaluation commissioned by the WHO Evaluation Office.
- 15.Yaya S, Idriss-Wheeler D, Sanogo N A, Vezina M, Bishwajit G. (2020) Self-reported activities of daily living, health and quality of life among older adults in South Africa and Uganda: a cross sectional study. BMC Geriatr. 20(1), 1-11.
- 16.Maniragaba F, Kwagala B, Bizimungu E, Ojiambo Wandera S, Ntozi J. (2018) Predictors of quality of life of older persons in rural Uganda: A cross sectional study. AAS Open Res. 1-22.
- 17.Siddharthan T, Kalyesubula R, Morgan B, Ermer T, Rabin T L et al. (2021) The rural Uganda non-communicable disease ( RUNCD ) study prevalence and risk factors of self-reported NCDs from a cross sectional survey. 1-8.
- 18.Guwatudde D, Mutungi G, Wesonga R, Kajjura R, Kasule H et al. (2015) The epidemiology of hypertension in Uganda: Findings from the national non-communicable diseases risk factor survey. PLoS One. 10(9), 1-13.
- 19.Chang H, Hawley N L, Kalyesubula R, Siddharthan T, Checkley W et al. (2019) Challenges to hypertension and diabetes management in rural Uganda a qualitative study with patients , village health team members , and health care professionals. 1, 1-14.
- 20.Nalwadda C K, ANNR Akiteng, Hsieh E, Hawley N L, Kalyesubula R et al. (2021) Social Support for Self- Care Patient Strategies for Managing Diabetes and Hypertension in Rural Uganda. 87(1), 1-13.
- 21.Palinkas L A, Horwitz S M, Green C A, Wisdom J P, Duan N et al. (1968) Dentists face added drug regulation. Dent Surv. 44-12.
- 22.Rahimi S, khatooni M. (2024) Saturation in qualitative research: An evolutionary concept analysis. Int J Nurs Stud Adv [Internet]. 6(December 2023): Available from: https://doi.org/10.1016/j.ijnsa.2024.100174 100174.
- 23.Defar S, Abraham Y, Reta Y, Deribe B, Jisso M et al. (2023) Health related quality of life among people with mental illness: The role of socio-clinical characteristics and level of functional disability. Front Public Heal. 11.
- 24.Lee E, Cha S, Kim G M. (2021) Factors affecting health-related quality of life in multimorbidity. Healthc. 9-3.
- 25.Tourani S, Behzadifar M, Martini M, Aryankhesal A, Taheri Mirghaed M et al. (2018) Health-related quality of life among healthy elderly Iranians: A systematic review and meta-analysis of the literature. Health Qual Life Outcomes. 16(1), 1-9.
- 26.Craig S, Frankford R, Allan K, Williams C, Schwartz C et al. (2016) Self-reported patient psychosocial needs in integrated primary health care: A role for social work in interdisciplinary teams. Soc Work Health Care. 55(1), 41-60.