Exploring barriers experienced by elderly living with HIV related to their engagement in activities of daily living.

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Mashudu Nemakanga, Enos Ramano, Mavis Mulaudzi This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4395083/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background HIV places enormous stress on the well-being of infected elderly people when performing activities of daily living. Surviving with HIV can be extremely challenging at any age, however elderly people living with HIV have to be contended with physical, mental and psychological barriers. Both ageing and HIV infection can work separately or interactively to reduce their human immune response. Unmet needs related to activities of daily living among elderly people with HIV may lead to adverse consequences resulting in deteriorating health outcomes. The purpose of this research study was to explore barriers experienced by elderly living with HIV related to their engagement in activities of daily living. Methods An explorative qualitative study was conducted, using a purposive sampling method to recruit participants at three public healthcare district hospitals. The researcher conducted semi-structured Interviews of 10 focus group discussions with elderly people aged 60 years and above who had lived with HIV. The data was analysed thematically. Results The key themes that emerged included psychological, physical, and cognitive barriers. Furthermore, other barriers were functional mobility, change in sexual engagement, personal hygiene, eating challenges, and emotions associated with their HIV status. Conclusions This study concludes that elderly people living with HIV experience several barriers during their engagement in activities of daily living. Understanding the barriers of the elderly people living with HIV will inform the development of appropriate interventions to improve their well-being, health and quality of life. Therefore, there is an urgent need to develop occupational therapy programme to assist in providing appropriate care for the elderly people living with HIV. Activities of daily living Elderly living with HIV Experiences Health Quality of life Wellbeing Background Globally the number of elderly HIV- infected population is growing [ 1 ]. With the success of antiretroviral therapy (ART) leading to longer life expectancy, elderly age in people living with HIV infection has become increasingly prevalent [ 2 ]. HIV is increasingly infecting elderly people; however, available data do not often include how the pandemic is affecting this population group functionally [ 3 ]. Combined effects of ageing and disease-related effects can subsequently affect functional abilities. HIV places enormous stress on infected individuals that contribute to and hinder elderly people’s well-being when performing ADL [ 4 ]. Surviving with HIV can be extremely challenging at any age, however elderly people living with HIV have to be contended with physical, mental and psychological declines of an ageing body, as both ageing and HIV infection can work separately or interactively to reduce human immune response [ 5 ]. Despite the high level of HIV infection, very little is known concerning HIV among elderly people in South Africa with regard to ADL related needs as most of the research focus has been on men and women of reproductive age [ 6 ]. Unmet needs among elderly people living with HIV may lead to adverse consequences resulting in deteriorating health outcomes [ 7 ]. Mobolaji [ 8 ] added that the unmet needs for assistance in ADL may accentuate elderly ‘risk of falls, ill health, hospitalisation, and mortality. Subsequently, ELWHIV and related commodities are likely to develop ADL disability following the predictors of slow gait, lack of physical activities, poor muscle strength and balance [ 9 ]. Compared to healthy counterparts, it is reported that elderly living with HIV (ELWHIV) have greater mobility problems and issues with self-care and performance of ADL and reduced quality of life, despite successful viral suppression with antiretroviral therapy [ 10 ]. Difficulties in performing ADL are common among elderly population. Inability to perform the basic tasks as well as increased healthcare expenditure and dependence on care can have debilitating effects on health and quality of life of elderly population [ 11 ]. ADL are viewed as oriented toward taking care of one’s own body and performed on a daily basis [ 12 ]. This includes bathing, showering, toilet and toilet hygiene, dressing, eating, and swallowing, feeding, functional mobility, personal hygiene and grooming and sexual activities. According to Christiansen and Hammecker [ 13 ], these activities are considered fundamental to living in a social world. Moreover, they warrant basic survival and well-being. Occupational therapy has a role in addressing the physical, cognitive, and psychological manifestations of HIV and specifically, the challenges to ADL among elderly people with HIV [ 14 ]. It is vital for ELWHIV to maintain their ability to carry out activities such as bathing, dressing, and toileting, transferring and eating. These activities of daily living are fundamentally prominent to maintain elderly people’ independence and quality of life [ 15 ]. Clark et al [ 16 ] stated that activity that is personally meaningful and contextually anchored within elderly people’s everyday lives has a greater ability to enhance health-related outcomes. Understanding how elderly people experience the effects of HIV in their daily activities can provide insightful evidence to the scientific body of knowledge in research. Therefore, the purpose of this study is to explore barriers experienced by ELWHIV related to activities of daily living. Methods Qualitative explorative research design was used in the study to obtain intersubjective experiences of ELWHIV. Setting of the study The research study was conducted in semi-urban areas in wellness clinics of the three selected public hospitals in Gauteng. These hospitals provide same comprehensive range of level of care with full range of services. This includes, preventive, promotive, curative, maternity, in-patient health services, laboratory and HIV clinic services. Sampling strategy Purposive sampling method was used to choose the elderly people with HIV for the focus group discussions. Purposive sampling gave the researcher opportunity to identify elderly people for the study as they provided purposeful information of the research question in the study. Nursing staff at wellness clinic in various settings were requested to recruit the participants on a voluntarily basis who had to come for monthly check up. Nursing staff then arranged participants who met inclusion criteria and guided them to the organized venue of data collection. Participant’s selection Participants were purposively selected from public health facilities who met inclusion criteria. Participants who are 60 years old and more, and attending wellness clinic check-ups in the three selected public hospitals. The inclusion criterion was the willingness to participate in the study. Participants gave individual written consent before voluntary participation. The researchers explained the purpose of the study and sought their consent to take part. Data collection procedures Data collection was conducted on ten focus group discussions with ELWHIV. Socio-demographic characteristics were obtained from study participants. The study employed semi-structured interviews to collect data to understand the experiences from the research participants. The data collection was conducted in a private meeting room at the health facilities. Each focus group discussion lasted 45 min to 1 hour. An interview guide with open-ended and probing questions was used to collect data. Participants decided whether to participate in group discussion in English or the local language. All interviews were audio recorded with the permission of participants. Data collection stopped when no significant new information emerged from interaction with the participants. Data management and analysis Thematic data analysis was used to analyze data based on emerging themes. The raw data was organized in themes, which reflected on participant’s experiences. In order to gain understanding of the data and identifying emerging themes, listening of tape recorder and reading of transcripts was initiated. The audio files were listened to and then transcribed into participant’s language or any other languages of the participants. The transcripts were converted into English to ensure that translated of data has the same meaning. The coding was used to organize the data into categories or themes, which reflected participant’s experiences and occupational impact of elderly people living with HIV. The researcher followed the broad steps when analyzing data as outlined by Braun and Clarke [ 17 ]. (i) Immersion in the data: the researcher read and re-read the data collected in order to create mental picture. By repeatedly reading collected data, the researcher comprehended ideas about how to categorize the data into themes. (ii) Preliminary coding where the researcher categorize text into fragments that shared common characteristics. The researcher developed categories by looking for themes and patterns within data itself. (iii) Coding definitions, the researcher clearly defined the categories that were consistent. The code definition included title and description data to be categorized under that particular code. (iv) Coding was finalized, the researcher recoded the entire set data through the transcripts and breaking up the text into fragments which were allocated to a specific code. (v) Inter-coder reliability check was done with research supervisors to assist with coding to ensure dependability of the analysis. (vi) Interpretation of results was done following completion of careful coding of the entire data; the researcher began with the interpretation of the results. Ethical consideration The study obtained ethical clearance from the University of Pretoria’s Faculty of Health Science Research Ethics Committee (REC) chaired by Dr R Sommer and the National Health Research Committee (NHRC) chaired by Mr M Pitsi. The project number assigned for this study was 601/2018 with the reference number GP_20190_203. Permissions were also obtained from the management of each of the health facilities. All participants gave written informed consent to participate. All participants gave written informed consent to participate. Participation was voluntary, and all the interviews were conducted in a secured room to ensure participant confidentiality. Participants were assured that they were free to participate, decline, and withdraw from the study anytime. Their decision would not affect the care that they were receiving in wellness clinics. The principles of autonomy, justice and confidentiality were applied throughout the study by explaining the contents of the information sheet in a language the participants understood. The participants signed consent to participate and be audio recorded. The making use of a fair inclusion and exclusion criteria did not discriminate the participants on the basis of factors such as their race, gender, and religious beliefs. Alphanumeric codes were used in data analysis to ensure confidentiality. Results The experienced barriers associated with performance of ADL included psychological, physical, and cognitive. Furthermore, other barriers were functional mobility, change in sexual engagement, personal hygiene, eating challenges, and emotions associated with their HIV status. Participant’s characteristics The collected data of the focus groups was at three selected health facilities. The study was limited to elderly who have been diagnosed and lived with HIV as from the age of 60 and above. The data analysed was collected from 10 focus group discussions with a total number of 58 participants of which 28 were females and 30 males. Most of the participants were unemployed and were dependent on state grants for financial support. Very few participants were employed and only a few of those were in full and part time employment. The ethnicity of the participants was quite diverse as participants were Tswana, Zulu, Venda, Tsonga, Ndebele and Shona (Table 1 ). Table 1 Socio-demographic characteristics of the participants Variables Frequency N = 58 Percentage % Sex Male Female 30 28 51,7 48,3 Age 60–64 65–69 70–74 75–79 80–84 17 23 10 7 1 29,3 39,6 17,3 12,1 1,7 Marital status Married Single Divorced Cohabitation 32 16 7 3 55,2 27,6 12,1 5,1 Ethnic group Tswana Tsonga Venda Ndebele Zulu Others 29 12 5 3 7 2 50 20 9 6 12 3 Religion Christian Others 38 20 65,5 37,5 Employment status Pensioner Full time Part time 39 12 7 68,5 22,3 9,2 Educational level Never attended school Primary education Secondary education Tertiary education 29 20 6 3 50 34,4 9,4 6,2 Psychological barriers The participants expressed that they were affected psychologically by the condition. They verbalized that psychological barriers affected their ability to perform activities of daily living were stigma and discrimination by their families after learning that they were HIV positive. “I was sad when I was told that I am HIV positive. I could not do anything. I neglected myself. My family stigmatized me big time as I was helpless. I have realised that if I do not take responsibility for taking care of myself, nobody will do it for me. Because people will give you food at their time. Sometimes, they will not bath me the way I bath myself. I thank God that I gained the strength to do things myself. I do not wait for other people to help me (JF2P9: 63 year old male)”. “So my aunt’s children have been somehow ever since they found out that I am HIV positive. I don’t even ride in their cars. They are doctors. They take me simple. They say I have poison. They discriminate me even though I am their uncle. They are doctors. All my brothers have passed away. I had two brothers, they all passed away. I’m the one who’s left alone struggling to take care of myself. Sometimes I sleep without eating food. Because I lack the energy to cook for myself (JFG2P10: 61 year old female)”. Physical barriers Physical effects was a theme that emerged from the analysed data. The participants indicated that being HIV positive comes with many challenges. They expressed how physical aspects affected their performance regarding activities of daily living. The subthemes identified were tiredness, weight loss or gain, pain/stiffness and body weakness. “ I used to have a lot of energy. And I could work until I get tired. And when I get tired I get tired. And I could not get sick easily. But these days my body just gets tired. I can spend the whole day without bathing myself. I do not have a lot of energy in the morning. I cook, I clean and do daily house chores with some struggles. My body has changed though it’s not the same as before (MFG8P49: 66 year old female)”. “Erm….. So I used to have a very big body. I used to wear a size 36. But was surprised when I started losing weight and wore a size 30. I was even using wheelchair that I could not move it myself (MFG9P51: 65 year old female)”. “This disease is crippling my body. My whole body is full of pain. I live by medication and it is difficult to take care of myself. I cannot even bath the whole body myself, because of pain. My husband is the one who help me (MFG8P50: 63 year old female)”. “HIV can change you. It makes your body to be weak and you start having a lot of illnesses on top of the HIV illness. It was not easy to bath my body as I was getting tired quickly (JFG1P3: 77 year old male)”. Cognitive barriers Beside challenges that come with ageing, participants demonstrated how HIV contribute to the problem cognitive functioning. Majority of participants illustrated how cognitive function affected performance of activities. They reported forgetfulness associated with performance of activities of daily living, diminished judgement and loss of focus in self-care. “I have realized the problem of forgetting things after sometimes when I was diagnosed with HIV. I will even forget that I have opened tap of bath in my bathroom. Water will be all over place and this is really disturbing me. I think it is this HIV thing, because before I was not a forgetful person (MFG8P50: 63 year old female)”. “I sometimes fasten my shirt wrongly. But, according to me, I see it as the right thing of fastening my shirt. I commonly see people of my age living with this disease putting on clothes in the wrong way (JFG3P18: 71 year old female)”. “I hate doing activities that are long and take time. Because I struggle to pay attention on activities that take time like putting on makeup and shaving my body (JFG4P22: 70 year old male)”. Functional mobility barriers Functional mobility was identified as barriers. The participants reported limited accessibility to move around, standing intolerance and lower body extremities pain when performing ADL. “ As you can see that I use crutches for walking, I struggle to walk around the house freely and when I have to go to the outside toilet. The toilet is too small (MFG8P48: 67 year old female)”. “My knees were no longer functional. I was no longer able to stand and even walk properly as I would be hearing sound on my knees. I could not bath well while standing up using shower because of pain on the knees (MFG8P49: 66 year old female)”. “My knees were no longer functional. I was no longer able to even walk properly hearing sounds on my knees. I could not bath well because of pain on the knees (OFG7P41: 66 year old female)”. Changes in sexual engagement The participants indicated that sexuality is still an important activity for them. They indicated loss of interest in sexual engagement and high interest in sexual engagement. “Eish, I no longer have interest in sex and I am still married. I just give my husband because he wants it. Sometimes I refuse to have sex with him. I lost interest because of my HIV status. I usually have sex after a very long time. But, before HIV, I was addicted to sex (JFG3P17: 62 year old female)”. “These days, I like sex much and my husband does not give me the way I want it. I actually demand it from him. These had started since I began to take HIV medication. Naturally I do not like sex that much. My husband is also surprised about me liking sex too much, because he knows that I am not like that (JFG5P29: 61 year old female)”. Personal hygiene barriers The personal hygiene was identified as theme emanating from participants responses. They indicated that practice of taking care of one ‘self-body is significant. Most of the participants demonstrated challenges of personal hygiene. Difficulty to maintain the nails, tiredness to remove body hair, limitations to brush teeth and skin integrity were reported. “Because of the problems that this disease come with I cannot cut my nails of the foot on my own. Even if try do it myself, it takes time and I get tired to reach down my nails. I usually ask my wife to help me (OFG5P31: 67 year old Male)”. “I used to shave my private part properly, I was always clean. These days I am lazy to do it because I get tired too quickly. I just leave my hair and grow. Unfortunately, my husband is dead and I cannot ask anyone to help me. I know that if my husband was alive, he was going to help me shave (JFG4P23: 64 year old female)”. “I use to brush my teeth twice a day, since I was diagnosed with this HIV condition, I brush my teeth only once a day. It is because my hands sometimes fail me to hold toothbrush (MFG8P49: 66 year old female)”. “When I was diagnosed, I had weird sores on various parts of my body. So I had a very painful vein on my neck. And it was causing discomfort in my body when I had to dress myself with tight clothes. It was also a mission to bath as I was in pain (OFG6P38: 65 year old female)”. Eating challenges The challenges related to eating were mentioned by participants. Most of the participants demonstrated eating challenges such as loss of appetite, vomiting and diet modification. “After I was diagnosed with the disease, I could not eat food at all. I did not have appetite in food. I lost so much weight that I could not do anything, because I did not have energy to take care of myself (OFGP35: 78 year old female)”. “ I use to vomit a lot every time I eat food. I lost lots of weight. I could not bath or dress myself, because I did not strength to do so. When I was admitted in the hospital, I did not want eat, because I lacked appetite. But now it is much better. I can eat by myself, because they gave me medication that makes me hungry a lot (JFG1P6: 66 year old female)”. “This condition comes with couples of problems. The type of food had to change as a person living with this disease. I have to eat food with good nutrients. I only get pension grant and I am the bread winner. My children are not working. We all use this grant to buy food, fruits and vegetables (OFG7P44: 63 year old male)”. Emotions associated with their HIV status Participants responded with different emotions when they were told about their HIV positive status for the first time. The emotions experienced by participants were the subthemes which included hurt by the results of being HIV positive, shocked by the HIV status, fear of what will happen and suicidal thoughts. “I took it very bad even had a headache. I even asked myself what I was going to do because my children’s father passed away and I am left all alone. And on the other hand my children have to be supported. So I didn’t take it very well. They would take me to the toilet to help myself. I did not even have appetite to eat. But I was very hurt for eight years (OFG5P32: 75 year old female)”. No…no….When they told me that I was shock and sick I did not want to accept it. I am a person who is always at home. I don’t have friends and all that. I could not do meaningful activities of daily living including dressing nice clothes do my hair nicely, and bathing myself in a clean way. So when at work in 2011, when they tested me, I took that paper and threw it away because I was in denial (MFG10P58: 77 year old female). “I was afraid of dying and fear was all over me. I was very disappointed by the results of being HIV positive. I felt like my world is falling apart. Because this disease is associated with death. So, I did not take it well. But, nurses gave me counselling about the disease that it is not death sentence. If I take my medication all the time, I will have life. People will not even notice that I am HIV positive. I finally accepted that this disease is not death sentence as people say (OFG5P30: 65 year old male)”. “Yooh…… My heart was very painful. And I thought my life was over. I even thought of killing myself. What consoled me was the nurse in the hospital and the church members at church. They told me that I am not the first and the last one to have HIV (JFG1P3:77 year old male)”. Discussion HIV has a negative psychological impact on the well-being of the elderly who are infected by this pandemic. The psychological impact of HIV on the elderly people is substantial and must be addressed. This study found stigma and discrimination as barrier for elderly when performing activities of daily living. During focus group discussions, it was evident that elderly living with HIV were stigmatized and discriminated by their families. Some participants experienced lack of support from their families during participation of activities of daily living. Stigma and isolation are important issues for elderly people living with HIV. Living in the community makes it difficult for them to hide their HIV status, particularly as the disease progresses. Elderly people with HIV are neglected and judged [ 18 ]. As a result of the stigma associated with HIV in the community, support from friends is minimal. Another study found that elderly people living with HIV stated that they had no friends or that their friends were unsupportive [ 19 ]. According to Knodel et al [ 20 ], HIV remains the most highly stigmatized illness globally, profoundly affecting the lives of individuals living with HIV. As a socially constructed process, HIV-related stigma results in prejudice and acts of discrimination against individuals living with HIV [ 21 ]. The finding of this research suggests that discrimination is still a big challenge amongst people living with HIV including the elderly. This study adds to the findings of similar studies regarding discrimination. Mohammad et al [ 22 ] reported that HIV-related discrimination often leads to psychological stress. Research has shown that middle-aged and elderly adults with HIV who had less support from family had more psychological symptoms and higher stress in life [ 23 ]. The literature review on HIV revealed various psychological impacts on elderly [ 24 ]. For those that are infected with HIV, experiences of hopelessness and loneliness, anticipatory grief, shame and fear. HIV has a negative psychological impact on the well-being of the elderly who are infected by this pandemic. HIV comes with myriad physical challenges as demonstrated by the findings of this study. The analysed data demonstrated how elderly people living with HIV experienced physical problems. This study found that elderly people living with HIV experienced physical barriers such as tiredness, weight gain or loss and pain/stiffness. Therefore, they often struggle to perform some of the activities of daily living. Poor physical well-being is likely to increase discomfort, fear of death and anxiety that one’s disease will soon progress to more advanced stages of HIV [ 25 ]. The participants indicated that there had been deterioration in their physical health in course of their illness. They reported that they visited the local health centre if they felt ill and received medication to treat their symptoms. For elderly people living with HIV, the effect of the disease is prominent. Study done by Majumdar and Mazaleni [ 4 ] showed that elderly deteriorate in physical health due to illnesses related to ageing as well as due to HIV. The results further showed that older adults visit local clinic health center when feeling ill physically. The general symptoms of people living with HIV such as fatigue and pain, found to be the common problems experienced by elderly people living with HIV. These results are consistent with findings from existing research from other scholars which suggest physical experience that include pain and fatigue [ 26 ]. Additionally, in research with elderly people living with HIV, fatigue was reported as the most common physical symptom in elderly with HIV [ 27 ]. Fatigue may be exacerbated or more burdensome because of the ageing process, disease process, inactivity and deconditioning, and poor sleep [ 28 ]. Not only are symptoms such as fatigue associated with physical experience and poor quality of life, however; pain is also known to impact on ADL [ 29 ]. Whilst pain has been identified as a prevalent problem in elderly living with HIV, other musculoskeletal symptoms have been largely neglected in clinical practice, and little research has been conducted [ 30 ]. Beside challenges that come with ageing, participants demonstrated how HIV contribute to the problem of memory. Majority of participants illustrated forgetfulness challenges when performing activities of daily living. The study findings reveal that elderly people experience forgetfulness when bathing, dressing and brushing their teeth. One participant mentioned that she would forget that she had opened a tap of water in her bathroom and water will run all over the place. During dressing activity, buttoning appropriately was also reported by participants. Forgetfulness associated with accomplishing activities of daily living seem to have substantial negative impact on the elderly people living with HIV. Declines in the performance of ADL contribute to the level of independence that elderly living with HIV maintains and are important predictors of health and well-being outcomes, including quality of life. The ability to perform activities of daily living often diminishes in elderly living with HIV due to progressiveness of the disease as well as ageing [ 31 ]. The data of this study have shown a negative association between cognitive function and activities of daily living in elderly living with HIV. This is in line with several previous studies. Loss of activity of daily living independence associated largely with declines of memory function and personal care activities showing the largest effects [ 32 ]. Altgassen et al [ 33 ] studies have shown that the presence of memory impairment could affect the functional abilities in elderly living with HIV, particularly the activities of daily living. Boss et al [ 34 ] have added that memory dysfunction had a strong impact on activities of daily living dysfunction. Kraal et al [ 35 ] found that memory impairment also interferes with health-related quality of life amongst elderly population. Memory impairment has also been reported to be associated with poor performance of activities of daily living in elderly people living with HIV [ 36 ]. American Occupational Therapy Association [ 37 ] describe functional mobility as moving from one position or place to another during performance of everyday activities such as in-bed mobility, wheelchair mobility, and transfers e.g., wheelchair, bed, car, shower, tub, toilet, chair, floor. It also includes functional ambulation and transportation of objects. According to the International Classification of Functioning framework, environmental factors directly influence participation in individuals [ 38 ]. In order to address functional mobility, it is therefore imperative to undertake home assessment to identify environmental barriers so that appropriate modification can be made to enhance participation in activities of daily living. Elderly people with functional mobility challenges are at an increased risk for dependence in daily activities, a decreased quality of life, and at a higher risk for mortality [ 39 , 40 ]. Therefore, preventing mobility disability is essential in the growing elderly population to extend independence, functional ability, and longevity [ 6 ]. In view of the above, moving from one position to another during performance of activities of daily living is of outmost significant. This study revealed that elderly had experienced functional mobility barriers such as inaccessibility, unsupportive family members and community stigma. Some participants illustrated how difficult it is to access toilet, shower or bathroom when using wheelchair. Poria et al [ 41 ] demonstrated that many elderly people are completely unable to access toilets in their homes due to the narrow doorway to enter inside. Possible environmental modifications that would make transfers possible for wheelchair users including a wider doorway, more space and the addition of grab bars or other transfer aids near the toilet. Furthermore, it is suggested that the size of the shower, space for transfer near the toilet, and presence and location of transfer aids all affect elderly people ability to transfer safely in bathrooms [ 41 ]. While many elderly people remain sexually active and may have concerns about sexual function and their problems are infrequently addressed by the health sector [ 42 ]. This study found that sexual activity is still significant amongst elderly. The results of this study demonstrated the lived experiences where elderly indicated loss of interest in sex as barrier. Subsequently, the findings of the study suggest that it is as result of living with HIV or after the diagnosis of HIV. Furthermore, other contributing barriers identified from the study findings include mental, emotional, social and physical barriers. Some participants reported experience of body pain, tiredness during sexual activity. It was also evidence from the findings of the study that elderly have experienced irritability, lack of motivation and pain during sexual activity. It is stated by De Lamater [ 43 ] that this age group of elderly has a higher probability of sexual dysfunction due to ageing and development of chronic illnesses such as HIV. Commonly reported sexual dysfunction problems among elderly include lack of interest in sex; arousal problems; climaxing too early; inability to achieve an orgasm; experiencing pain during sex; not finding sex pleasurable and anxiety about performance [ 44 ]. Personal hygiene in occupational therapy profession has to do with obtaining and using supplies; removing body hair (e.g., using razor, tweezers, lotion); applying and removing cosmetics; washing, drying, combing, styling, brushing, and trimming hair; caring for nails (hands and feet); caring for skin, ears, eyes, and nose; applying deodorant; cleaning mouth; brushing and flossing teeth; and removing, cleaning, and reinserting dental orthotics and prosthetics [ 37 ]. Nails maintenance was reported as barrier by elderly. This study results indicated that they get tired easily and struggle to cut their nails as they find it hard to reach down or bend their bodies. Notably, elderly emphasized the fact that they easily get tired when cutting nails. Therefore, family members serve as support system to do this activity. It is not clear if tiredness resonates from HIV alone or could it be the only possible determinant or ageing also play significant role. Further research could be explored to make such distinction. Although there are various reasons and factors which could hinder or become obstacles to maintain a proper and effective personal hygiene practice amongst elderly. There can be categories as physical, psychological and social factors as well as health conditions [ 45 ]. This study also identified removing of body hair amongst elderly as problematic. One participant said that her body fails her when participating in this activity while others mentioned that they easily get tired. Fatigue is perceived as the contributing factor that they struggle to remove their body hair. They have illustrated that they depend on others or family members. A study done by Jadhav [ 45 ] stated that when elderly people are dependent on others in personal hygiene, they loss sense of dignity and self-esteem. The basic reason for not maintaining proper personal hygiene in elderly may be due to physical mobility and ill health conditions. Nutritional issues of elderly treated for HIV, and emphasis should be placed on promoting healthy eating habits among this population. The findings of this study demonstrated eating challenges that included loss of appetite, vomiting and diet modification. It was evident that some participants experienced lack of appetite to consume food. The participants mentioned problems of low energy and loss of weight. The findings of this study concurred with that of [ 46 ] indicating that the HIV infection does not require a complete change in eating habits. However, paying attention to rational nutrition and the supply of essential nutrients is important. Meals should be varied and provide sufficient energy. According to study done by Duda et al [ 47 ] confirmed that the recommendation of a higher intake of certain nutrients is justified, because it reduces the risk of full-blown AIDS. Besides other challenges associated with HIV, diet medication was also reported as barrier. Bell et al [ 48 ] reported that the older people living with HIV are usually more likely to be worse off in terms of spending money on diet adjustment, than their peers. People living with HIV including elderly have much higher expenses than members of the average population. As a result people living with HIV are spending up to an average of 30% of their income on medications [ 37 ]. A recent study found that 46% of HIV positive people are struggling to afford nutritional diet [ 49 ]. The study found that 60% of people with HIV are struggling to afford prescribed diet for their illnesses in addition to HIV [ 49 ]. The findings of this study demonstrated emotions associated with their HIV status that included being hurt by the results of being HIV, shocked by the HIV status, fear of what will happen and suicidal thoughts. Something noteworthy is that number of study participants reported high levels of psychological distress, especially for those who lacked social support, family support and access to care from health facility. Some participants also felt hurt and pain when they discovered that they are HIV positive. HIV has a negative psychological impact on the well-being of the older adults who are infected by this pandemic. Similarly, the study done by Bhavan et al [ 50 ] indicated that many elderly people living with HIV reported sadness and worry as a result of their deteriorating health and the grave prognosis. Consistently, this negative impact manifested in many forms, including fear, trauma and grieving, isolation, hopelessness and stigmatization [ 51 ]. Some participants felt suicidal after they discovered that they are HIV positive. The suicidal thoughts were outcomes of feeling of pain, denial and shock. As one of the participant (priest) said, that he has never imaged that one day he could be infected with HIV by his wife who seemed faithful. Suicide risk in HIV-infected may be higher than in populations with other chronic medical illnesses [ 52 ]. Evidence suggests that risk of suicidal behaviour increases during the initial weeks following a diagnosis of HIV disease and then declines as patients adjust to their HIV status [ 14 ]. However, as elderly people’s health and quality of life decline, risk of suicide may again increase, particularly among older patients, who frequently experience poorer health-related quality of life when progressing to AIDS [ 53 ]. Conclusions The findings of this study highlighted barriers associated with ADL that include psychological, physical, cognitive, functional mobility, change in sexual engagement, personal hygiene, eating challenges and emotions associated HIV status. Addressing the needs of this population is the primary domain of the rehabilitation of elderly people which may greatly assist to inform the research and the clinical management of those ageing with HIV infection. Subsequently, there is a need to develop occupational therapy programmes to help promote health and well-being of ELHIV related to ADL. Therefore occupational therapy is a unique profession by its nature to promote occupational well-being, functional independence as well as health using ADL. Abbreviations ADL Activities of Daily Living AIDS Acquired Immunodeficiency Syndrome ART Antiretroviral Therapy HIV Human Immunodeficiency Virus ELHIV Elderly living with HIV Declarations Ethics approval is 601/2018 and consent to participate is GP_20190_203 Consent for publication: Yes Availability of data and material: Not applicable Competing interests: Not applicable Funding: Not applicable Authors' contributions: Not applicable Acknowledgements: Not applicable Authors' information (optional): Not applicable Clinical Trial Number in the manuscript: Not applicable References Mbalinda SN, Lusota DA, Muddu M, Nyashanu M. Ageing with HIV: challenges and coping mechanisms of older adults 50 years and above living with HIV in Uganda. BMC Geriatr. 2024;24:95. https://doi.org/10.1186/s12877-024-04704-z . 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Experiences of elderly women caring for people living with HIV and AIDS in Masindi District, Uganda AIDS Care, 33, 2021 - Issue 8. Rodriguez-Penney AT. Co-morbidities in persons infected with HIV: Increased burden with older age and negative effects on health-related quality of life. AIDS Patient Care STDs. 2013;27(1):5–16. Pence B. Chronicity and remission of fatigue in patients with established HIV infection. AIDS Patient Care STDS, 23(4), 239–2442019. Aouizerat BE, Gay CL, Lerdal A, Portillo CJ, Lee KA. Lack of energy: An important and distinct component of HIV-related fatigue and daytime function. J Pain Symptom Manag. 2013;45:191–201. https://doi.org/10.1016/j.painsymman.2016.01 . 45:191‐201. Rosenfeld B, Breitbart W, McDonal MV, Passik SD, Thaler H, Portenoy RK. Pain in ambulatory AIDS patients. II: Impact of pain on psychological functioning and quality of life. Pain. 2016;68(2–3):323–8. PMID: 9121821. Harding R, Clucas C, Lampe FC, Date HL, Fisher M, Johnson M. What factors are associated with patient self-reported health status among HIV outpatients? A multi-centre UK study of biomedical and psychosocial factors. AIDS Care. 2019; 24(8):963–71. https://doi.org/10.1080/09540121.2012.668175 PMID: 22519889. Kaptain RJ, Tina H, Patomella AH, Weinreich UM, Kottorp A. New Insights into Activities of Daily Living Performance in Chronic Obstructive Pulmonary Disease This article was published in the following Dove Press journal: International Journal of Chronic Obstructive Pulmonary Disease. Int J Chronic Obstr Pulm Dis 2021:161–12. Wilson RS, Segawa E, Boyle PA, Bennett DA. Influence of late-life cognitive activity on cognitive health. Neurology. 2012;78(15):1123–9. 10.1212/WNL.0b013e31824f8c03] . [FREE Full text] [. Altgassen M, Rendell PG, Bernhard A, Henry JD, Bailey PE, Phillips LH, Kliegel M. Future thinking improves prospective memory performance and plan enactment in older adults. 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Sexual activity after 60: a systematic review of associated factors. Sex Med Rev. 2017;5(1):52–80. Geuns D, Klipstein-Grobusch K, Vos A. Food insecurity and HIV medication adherence among people living with HIV in rural South-Africa 2023, https://studenttheses.uu.nl/handle/20.500.12932/44057 . Bhavan KP, Kampalath VN, Overton ET. The aging of the HIV epidemic. HIV/AIDS Rep 2018 (5), 150–886. McGrath M, Lynch E. Occupational therapists' perspectives on addressing sexual concerns of older adults in the context of rehabilitation. Disabil Rehabil. 2014;36(8):651–7. https://doi.org/10.3109/09638288.2013.805823 . Okuno MFP, Gomes AC, Meazzini L, Scherrer G, Belasco Júnior D, Belasco AGS. Quality of life in elderly patients living with HIV/AIDS. Cad Saúde Publication. 2014;30(7):1551–9. Chesney MA, Chambers DB, Taylor JM, Johnson LM. Social support, distress, and well-being in older men living with HIV infection. J Acquir Immune Defic Syndr. 2012;33(2):185–93. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4395083","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":313566487,"identity":"39875314-3813-460b-9c35-8a2f68540abd","order_by":0,"name":"Mashudu Nemakanga","email":"data:image/png;base64,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","orcid":"","institution":"University of Pretoria","correspondingAuthor":true,"prefix":"","firstName":"Mashudu","middleName":"","lastName":"Nemakanga","suffix":""},{"id":313566488,"identity":"10c11d0a-687c-4380-8496-04aa9c0f6083","order_by":1,"name":"Enos Ramano","email":"","orcid":"","institution":"University of Pretoria","correspondingAuthor":false,"prefix":"","firstName":"Enos","middleName":"","lastName":"Ramano","suffix":""},{"id":313566489,"identity":"b3701416-5b9a-403b-a15e-0fc8d94711a2","order_by":2,"name":"Mavis Mulaudzi","email":"","orcid":"","institution":"University of Pretoria","correspondingAuthor":false,"prefix":"","firstName":"Mavis","middleName":"","lastName":"Mulaudzi","suffix":""}],"badges":[],"createdAt":"2024-05-09 12:16:47","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4395083/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4395083/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":79747543,"identity":"a233004e-2bfd-49e8-b085-33b5d8d1f696","added_by":"auto","created_at":"2025-04-02 09:02:10","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":690480,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4395083/v1/81ebaf05-4a7e-434d-9c22-86dc82401df8.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Exploring barriers experienced by elderly living with HIV related to their engagement in activities of daily living.","fulltext":[{"header":"Background","content":"\u003cp\u003eGlobally the number of elderly HIV- infected population is growing [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. With the success of antiretroviral therapy (ART) leading to longer life expectancy, elderly age in people living with HIV infection has become increasingly prevalent [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. HIV is increasingly infecting elderly people; however, available data do not often include how the pandemic is affecting this population group functionally [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. Combined effects of ageing and disease-related effects can subsequently affect functional abilities. HIV places enormous stress on infected individuals that contribute to and hinder elderly people\u0026rsquo;s well-being when performing ADL [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. Surviving with HIV can be extremely challenging at any age, however elderly people living with HIV have to be contended with physical, mental and psychological declines of an ageing body, as both ageing and HIV infection can work separately or interactively to reduce human immune response [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eDespite the high level of HIV infection, very little is known concerning HIV among elderly people in South Africa with regard to ADL related needs as most of the research focus has been on men and women of reproductive age [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. Unmet needs among elderly people living with HIV may lead to adverse consequences resulting in deteriorating health outcomes [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. Mobolaji [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e] added that the unmet needs for assistance in ADL may accentuate elderly \u0026lsquo;risk of falls, ill health, hospitalisation, and mortality. Subsequently, ELWHIV and related commodities are likely to develop ADL disability following the predictors of slow gait, lack of physical activities, poor muscle strength and balance [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. Compared to healthy counterparts, it is reported that elderly living with HIV (ELWHIV) have greater mobility problems and issues with self-care and performance of ADL and reduced quality of life, despite successful viral suppression with antiretroviral therapy [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eDifficulties in performing ADL are common among elderly population. Inability to perform the basic tasks as well as increased healthcare expenditure and dependence on care can have debilitating effects on health and quality of life of elderly population [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. ADL are viewed as oriented toward taking care of one\u0026rsquo;s own body and performed on a daily basis [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]. This includes bathing, showering, toilet and toilet hygiene, dressing, eating, and swallowing, feeding, functional mobility, personal hygiene and grooming and sexual activities. According to Christiansen and Hammecker [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e], these activities are considered fundamental to living in a social world. Moreover, they warrant basic survival and well-being. Occupational therapy has a role in addressing the physical, cognitive, and psychological manifestations of HIV and specifically, the challenges to ADL among elderly people with HIV [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eIt is vital for ELWHIV to maintain their ability to carry out activities such as bathing, dressing, and toileting, transferring and eating. These activities of daily living are fundamentally prominent to maintain elderly people\u0026rsquo; independence and quality of life [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]. Clark et al [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e] stated that activity that is personally meaningful and contextually anchored within elderly people\u0026rsquo;s everyday lives has a greater ability to enhance health-related outcomes. Understanding how elderly people experience the effects of HIV in their daily activities can provide insightful evidence to the scientific body of knowledge in research. Therefore, the purpose of this study is to explore barriers experienced by ELWHIV related to activities of daily living.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eQualitative explorative research design was used in the study to obtain intersubjective experiences of ELWHIV.\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eSetting of the study\u003c/h2\u003e \u003cp\u003eThe research study was conducted in semi-urban areas in wellness clinics of the three selected public hospitals in Gauteng. These hospitals provide same comprehensive range of level of care with full range of services. This includes, preventive, promotive, curative, maternity, in-patient health services, laboratory and HIV clinic services.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eSampling strategy\u003c/h2\u003e \u003cp\u003ePurposive sampling method was used to choose the elderly people with HIV for the focus group discussions. Purposive sampling gave the researcher opportunity to identify elderly people for the study as they provided purposeful information of the research question in the study. Nursing staff at wellness clinic in various settings were requested to recruit the participants on a voluntarily basis who had to come for monthly check up. Nursing staff then arranged participants who met inclusion criteria and guided them to the organized venue of data collection.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eParticipant\u0026rsquo;s selection\u003c/h2\u003e \u003cp\u003eParticipants were purposively selected from public health facilities who met inclusion criteria. Participants who are 60 years old and more, and attending wellness clinic check-ups in the three selected public hospitals. The inclusion criterion was the willingness to participate in the study. Participants gave individual written consent before voluntary participation. The researchers explained the purpose of the study and sought their consent to take part.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eData collection procedures\u003c/h2\u003e \u003cp\u003eData collection was conducted on ten focus group discussions with ELWHIV. Socio-demographic characteristics were obtained from study participants. The study employed semi-structured interviews to collect data to understand the experiences from the research participants. The data collection was conducted in a private meeting room at the health facilities. Each focus group discussion lasted 45 min to 1 hour. An interview guide with open-ended and probing questions was used to collect data. Participants decided whether to participate in group discussion in English or the local language. All interviews were audio recorded with the permission of participants. Data collection stopped when no significant new information emerged from interaction with the participants.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eData management and analysis\u003c/h2\u003e \u003cp\u003eThematic data analysis was used to analyze data based on emerging themes. The raw data was organized in themes, which reflected on participant\u0026rsquo;s experiences. In order to gain understanding of the data and identifying emerging themes, listening of tape recorder and reading of transcripts was initiated. The audio files were listened to and then transcribed into participant\u0026rsquo;s language or any other languages of the participants. The transcripts were converted into English to ensure that translated of data has the same meaning. The coding was used to organize the data into categories or themes, which reflected participant\u0026rsquo;s experiences and occupational impact of elderly people living with HIV. The researcher followed the broad steps when analyzing data as outlined by Braun and Clarke [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. (i) Immersion in the data: the researcher read and re-read the data collected in order to create mental picture. By repeatedly reading collected data, the researcher comprehended ideas about how to categorize the data into themes. (ii) Preliminary coding where the researcher categorize text into fragments that shared common characteristics. The researcher developed categories by looking for themes and patterns within data itself. (iii) Coding definitions, the researcher clearly defined the categories that were consistent. The code definition included title and description data to be categorized under that particular code. (iv) Coding was finalized, the researcher recoded the entire set data through the transcripts and breaking up the text into fragments which were allocated to a specific code. (v) Inter-coder reliability check was done with research supervisors to assist with coding to ensure dependability of the analysis. (vi) Interpretation of results was done following completion of careful coding of the entire data; the researcher began with the interpretation of the results.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eEthical consideration\u003c/h2\u003e \u003cp\u003e The study obtained ethical clearance from the University of Pretoria\u0026rsquo;s Faculty of Health Science Research Ethics Committee (REC) chaired by Dr R Sommer and the National Health Research Committee (NHRC) chaired by Mr M Pitsi. The project number assigned for this study was 601/2018 with the reference number GP_20190_203. Permissions were also obtained from the management of each of the health facilities. All participants gave written informed consent to participate. All participants gave written informed consent to participate. Participation was voluntary, and all the interviews were conducted in a secured room to ensure participant confidentiality. Participants were assured that they were free to participate, decline, and withdraw from the study anytime. Their decision would not affect the care that they were receiving in wellness clinics. The principles of autonomy, justice and confidentiality were applied throughout the study by explaining the contents of the information sheet in a language the participants understood. The participants signed consent to participate and be audio recorded. The making use of a fair inclusion and exclusion criteria did not discriminate the participants on the basis of factors such as their race, gender, and religious beliefs. Alphanumeric codes were used in data analysis to ensure confidentiality.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eThe experienced barriers associated with performance of ADL included psychological, physical, and cognitive. Furthermore, other barriers were functional mobility, change in sexual engagement, personal hygiene, eating challenges, and emotions associated with their HIV status.\u003c/p\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eParticipant\u0026rsquo;s characteristics\u003c/h2\u003e \u003cp\u003eThe collected data of the focus groups was at three selected health facilities. The study was limited to elderly who have been diagnosed and lived with HIV as from the age of 60 and above. The data analysed was collected from 10 focus group discussions with a total number of 58 participants of which 28 were females and 30 males. Most of the participants were unemployed and were dependent on state grants for financial support. Very few participants were employed and only a few of those were in full and part time employment. The ethnicity of the participants was quite diverse as participants were Tswana, Zulu, Venda, Tsonga, Ndebele and Shona (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eSocio-demographic characteristics of the participants\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eVariables\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFrequency N\u0026thinsp;=\u0026thinsp;58\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003ePercentage %\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSex\u003c/p\u003e \u003cp\u003eMale\u003c/p\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003e30\u003c/p\u003e \u003cp\u003e28\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003e51,7\u003c/p\u003e \u003cp\u003e48,3\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAge\u003c/p\u003e \u003cp\u003e60\u0026ndash;64\u003c/p\u003e \u003cp\u003e65\u0026ndash;69\u003c/p\u003e \u003cp\u003e70\u0026ndash;74\u003c/p\u003e \u003cp\u003e75\u0026ndash;79\u003c/p\u003e \u003cp\u003e80\u0026ndash;84\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003e17\u003c/p\u003e \u003cp\u003e23\u003c/p\u003e \u003cp\u003e10\u003c/p\u003e \u003cp\u003e7\u003c/p\u003e \u003cp\u003e1\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003e29,3\u003c/p\u003e \u003cp\u003e39,6\u003c/p\u003e \u003cp\u003e17,3\u003c/p\u003e \u003cp\u003e12,1\u003c/p\u003e \u003cp\u003e1,7\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eMarital status\u003c/b\u003e\u003c/p\u003e \u003cp\u003eMarried\u003c/p\u003e \u003cp\u003eSingle\u003c/p\u003e \u003cp\u003eDivorced\u003c/p\u003e \u003cp\u003eCohabitation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e32\u003c/p\u003e \u003cp\u003e16\u003c/p\u003e \u003cp\u003e7\u003c/p\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e55,2\u003c/p\u003e \u003cp\u003e27,6\u003c/p\u003e \u003cp\u003e12,1\u003c/p\u003e \u003cp\u003e5,1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eEthnic group\u003c/b\u003e\u003c/p\u003e \u003cp\u003eTswana\u003c/p\u003e \u003cp\u003eTsonga\u003c/p\u003e \u003cp\u003eVenda\u003c/p\u003e \u003cp\u003eNdebele\u003c/p\u003e \u003cp\u003eZulu\u003c/p\u003e \u003cp\u003eOthers\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e29\u003c/p\u003e \u003cp\u003e12\u003c/p\u003e \u003cp\u003e5\u003c/p\u003e \u003cp\u003e3\u003c/p\u003e \u003cp\u003e7\u003c/p\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e50\u003c/p\u003e \u003cp\u003e20\u003c/p\u003e \u003cp\u003e9\u003c/p\u003e \u003cp\u003e6\u003c/p\u003e \u003cp\u003e12\u003c/p\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eReligion\u003c/b\u003e\u003c/p\u003e \u003cp\u003eChristian\u003c/p\u003e \u003cp\u003eOthers\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e38\u003c/p\u003e \u003cp\u003e20\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e65,5\u003c/p\u003e \u003cp\u003e37,5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eEmployment status\u003c/b\u003e\u003c/p\u003e \u003cp\u003ePensioner\u003c/p\u003e \u003cp\u003eFull time\u003c/p\u003e \u003cp\u003ePart time\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e39\u003c/p\u003e \u003cp\u003e12\u003c/p\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e68,5\u003c/p\u003e \u003cp\u003e22,3\u003c/p\u003e \u003cp\u003e9,2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eEducational level\u003c/b\u003e\u003c/p\u003e \u003cp\u003eNever attended school\u003c/p\u003e \u003cp\u003ePrimary education\u003c/p\u003e \u003cp\u003eSecondary education\u003c/p\u003e \u003cp\u003eTertiary education\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e29\u003c/p\u003e \u003cp\u003e20\u003c/p\u003e \u003cp\u003e6\u003c/p\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e50\u003c/p\u003e \u003cp\u003e34,4\u003c/p\u003e \u003cp\u003e9,4\u003c/p\u003e \u003cp\u003e6,2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003ePsychological barriers\u003c/h2\u003e \u003cp\u003eThe participants expressed that they were affected psychologically by the condition. They verbalized that psychological barriers affected their ability to perform activities of daily living were stigma and discrimination by their families after learning that they were HIV positive.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I was sad when I was told that I am HIV positive. I could not do anything. I neglected myself. My family stigmatized me big time as I was helpless. I have realised that if I do not take responsibility for taking care of myself, nobody will do it for me. Because people will give you food at their time. Sometimes, they will not bath me the way I bath myself. I thank God that I gained the strength to do things myself. I do not wait for other people to help me (JF2P9: 63 year old male)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;So my aunt\u0026rsquo;s children have been somehow ever since they found out that I am HIV positive. I don\u0026rsquo;t even ride in their cars. They are doctors. They take me simple. They say I have poison. They discriminate me even though I am their uncle. They are doctors. All my brothers have passed away. I had two brothers, they all passed away. I\u0026rsquo;m the one who\u0026rsquo;s left alone struggling to take care of myself. Sometimes I sleep without eating food. Because I lack the energy to cook for myself (JFG2P10: 61 year old female)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003ePhysical barriers\u003c/h2\u003e \u003cp\u003ePhysical effects was a theme that emerged from the analysed data. The participants indicated that being HIV positive comes with many challenges. They expressed how physical aspects affected their performance regarding activities of daily living. The subthemes identified were tiredness, weight loss or gain, pain/stiffness and body weakness.\u003c/p\u003e \u003cp\u003e \u003cb\u003e\u0026ldquo;\u003c/b\u003e \u003cem\u003eI used to have a lot of energy. And I could work until I get tired. And when I get tired I get tired. And I could not get sick easily. But these days my body just gets tired. I can spend the whole day without bathing myself. I do not have a lot of energy in the morning. I cook, I clean and do daily house chores with some struggles. My body has changed though it\u0026rsquo;s not the same as before (MFG8P49: 66 year old female)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Erm\u0026hellip;.. So I used to have a very big body. I used to wear a size 36. But was surprised when I started losing weight and wore a size 30. I was even using wheelchair that I could not move it myself (MFG9P51: 65 year old female)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;This disease is crippling my body. My whole body is full of pain. I live by medication and it is difficult to take care of myself. I cannot even bath the whole body myself, because of pain. My husband is the one who help me (MFG8P50: 63 year old female)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;HIV can change you. It makes your body to be weak and you start having a lot of illnesses on top of the HIV illness. It was not easy to bath my body as I was getting tired quickly (JFG1P3: 77 year old male)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eCognitive barriers\u003c/h2\u003e \u003cp\u003eBeside challenges that come with ageing, participants demonstrated how HIV contribute to the problem cognitive functioning. Majority of participants illustrated how cognitive function affected performance of activities. They reported forgetfulness associated with performance of activities of daily living, diminished judgement and loss of focus in self-care.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I have realized the problem of forgetting things after sometimes when I was diagnosed with HIV. I will even forget that I have opened tap of bath in my bathroom. Water will be all over place and this is really disturbing me. I think it is this HIV thing, because before I was not a forgetful person (MFG8P50: 63 year old female)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I sometimes fasten my shirt wrongly. But, according to me, I see it as the right thing of fastening my shirt. I commonly see people of my age living with this disease putting on clothes in the wrong way (JFG3P18: 71 year old female)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I hate doing activities that are long and take time. Because I struggle to pay attention on activities that take time like putting on makeup and shaving my body (JFG4P22: 70 year old male)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003eFunctional mobility barriers\u003c/h2\u003e \u003cp\u003eFunctional mobility was identified as barriers. The participants reported limited accessibility to move around, standing intolerance and lower body extremities pain when performing ADL.\u003c/p\u003e \u003cp\u003e \u003cb\u003e\u0026ldquo;\u003c/b\u003e \u003cem\u003eAs you can see that I use crutches for walking, I struggle to walk around the house freely and when I have to go to the outside toilet. The toilet is too small (MFG8P48: 67 year old female)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;My knees were no longer functional. I was no longer able to stand and even walk properly as I would be hearing sound on my knees. I could not bath well while standing up using shower because of pain on the knees (MFG8P49: 66 year old female)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;My knees were no longer functional. I was no longer able to even walk properly hearing sounds on my knees. I could not bath well because of pain on the knees (OFG7P41: 66 year old female)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eChanges in sexual engagement\u003c/h2\u003e \u003cp\u003eThe participants indicated that sexuality is still an important activity for them. They indicated loss of interest in sexual engagement and high interest in sexual engagement.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Eish, I no longer have interest in sex and I am still married. I just give my husband because he wants it. Sometimes I refuse to have sex with him. I lost interest because of my HIV status. I usually have sex after a very long time. But, before HIV, I was addicted to sex (JFG3P17: 62 year old female)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;These days, I like sex much and my husband does not give me the way I want it. I actually demand it from him. These had started since I began to take HIV medication. Naturally I do not like sex that much. My husband is also surprised about me liking sex too much, because he knows that I am not like that (JFG5P29: 61 year old female)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003ePersonal hygiene barriers\u003c/h2\u003e \u003cp\u003e The personal hygiene was identified as theme emanating from participants responses. They indicated that practice of taking care of one \u0026lsquo;self-body is significant. Most of the participants demonstrated challenges of personal hygiene. Difficulty to maintain the nails, tiredness to remove body hair, limitations to brush teeth and skin integrity were reported.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Because of the problems that this disease come with I cannot cut my nails of the foot on my own. Even if try do it myself, it takes time and I get tired to reach down my nails. I usually ask my wife to help me (OFG5P31: 67 year old Male)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I used to shave my private part properly, I was always clean. These days I am lazy to do it because I get tired too quickly. I just leave my hair and grow. Unfortunately, my husband is dead and I cannot ask anyone to help me. I know that if my husband was alive, he was going to help me shave (JFG4P23: 64 year old female)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I use to brush my teeth twice a day, since I was diagnosed with this HIV condition, I brush my teeth only once a day. It is because my hands sometimes fail me to hold toothbrush (MFG8P49: 66 year old female)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;When I was diagnosed, I had weird sores on various parts of my body. So I had a very painful vein on my neck. And it was causing discomfort in my body when I had to dress myself with tight clothes. It was also a mission to bath as I was in pain (OFG6P38: 65 year old female)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eEating challenges\u003c/h2\u003e \u003cp\u003e The challenges related to eating were mentioned by participants. Most of the participants demonstrated eating challenges such as loss of appetite, vomiting and diet modification.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;After I was diagnosed with the disease, I could not eat food at all. I did not have appetite in food. I lost so much weight that I could not do anything, because I did not have energy to take care of myself (OFGP35: 78 year old female)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cb\u003e\u0026ldquo;\u003c/b\u003e \u003cem\u003eI use to vomit a lot every time I eat food. I lost lots of weight. I could not bath or dress myself, because I did not strength to do so. When I was admitted in the hospital, I did not want eat, because I lacked appetite. But now it is much better. I can eat by myself, because they gave me medication that makes me hungry a lot (JFG1P6: 66 year old female)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;This condition comes with couples of problems. The type of food had to change as a person living with this disease. I have to eat food with good nutrients. I only get pension grant and I am the bread winner. My children are not working. We all use this grant to buy food, fruits and vegetables (OFG7P44: 63 year old male)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eEmotions associated with their HIV status\u003c/h2\u003e \u003cp\u003e Participants responded with different emotions when they were told about their HIV positive status for the first time. The emotions experienced by participants were the subthemes which included hurt by the results of being HIV positive, shocked by the HIV status, fear of what will happen and suicidal thoughts.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I took it very bad even had a headache. I even asked myself what I was going to do because my children\u0026rsquo;s father passed away and I am left all alone. And on the other hand my children have to be supported. So I didn\u0026rsquo;t take it very well. They would take me to the toilet to help myself. I did not even have appetite to eat. But I was very hurt for eight years (OFG5P32: 75 year old female)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003eNo\u0026hellip;no\u0026hellip;.When they told me that I was shock and sick I did not want to accept it. I am a person who is always at home. I don\u0026rsquo;t have friends and all that. I could not do meaningful activities of daily living including dressing nice clothes do my hair nicely, and bathing myself in a clean way. So when at work in 2011, when they tested me, I took that paper and threw it away because I was in denial (MFG10P58: 77 year old female).\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I was afraid of dying and fear was all over me. I was very disappointed by the results of being HIV positive. I felt like my world is falling apart. Because this disease is associated with death. So, I did not take it well. But, nurses gave me counselling about the disease that it is not death sentence. If I take my medication all the time, I will have life. People will not even notice that I am HIV positive. I finally accepted that this disease is not death sentence as people say (OFG5P30: 65 year old male)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Yooh\u0026hellip;\u0026hellip; My heart was very painful. And I thought my life was over. I even thought of killing myself. What consoled me was the nurse in the hospital and the church members at church. They told me that I am not the first and the last one to have HIV (JFG1P3:77 year old male)\u0026rdquo;.\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eHIV has a negative psychological impact on the well-being of the elderly who are infected by this pandemic. The psychological impact of HIV on the elderly people is substantial and must be addressed. This study found stigma and discrimination as barrier for elderly when performing activities of daily living. During focus group discussions, it was evident that elderly living with HIV were stigmatized and discriminated by their families. Some participants experienced lack of support from their families during participation of activities of daily living. Stigma and isolation are important issues for elderly people living with HIV. Living in the community makes it difficult for them to hide their HIV status, particularly as the disease progresses. Elderly people with HIV are neglected and judged [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. As a result of the stigma associated with HIV in the community, support from friends is minimal. Another study found that elderly people living with HIV stated that they had no friends or that their friends were unsupportive [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e]. According to Knodel et al [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e], HIV remains the most highly stigmatized illness globally, profoundly affecting the lives of individuals living with HIV. As a socially constructed process, HIV-related stigma results in prejudice and acts of discrimination against individuals living with HIV [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. The finding of this research suggests that discrimination is still a big challenge amongst people living with HIV including the elderly. This study adds to the findings of similar studies regarding discrimination. Mohammad et al [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e] reported that HIV-related discrimination often leads to psychological stress. Research has shown that middle-aged and elderly adults with HIV who had less support from family had more psychological symptoms and higher stress in life [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e]. The literature review on HIV revealed various psychological impacts on elderly [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. For those that are infected with HIV, experiences of hopelessness and loneliness, anticipatory grief, shame and fear. HIV has a negative psychological impact on the well-being of the elderly who are infected by this pandemic.\u003c/p\u003e \u003cp\u003eHIV comes with myriad physical challenges as demonstrated by the findings of this study. The analysed data demonstrated how elderly people living with HIV experienced physical problems. This study found that elderly people living with HIV experienced physical barriers such as tiredness, weight gain or loss and pain/stiffness. Therefore, they often struggle to perform some of the activities of daily living. Poor physical well-being is likely to increase discomfort, fear of death and anxiety that one\u0026rsquo;s disease will soon progress to more advanced stages of HIV [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e]. The participants indicated that there had been deterioration in their physical health in course of their illness. They reported that they visited the local health centre if they felt ill and received medication to treat their symptoms. For elderly people living with HIV, the effect of the disease is prominent. Study done by Majumdar and Mazaleni [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e] showed that elderly deteriorate in physical health due to illnesses related to ageing as well as due to HIV. The results further showed that older adults visit local clinic health center when feeling ill physically. The general symptoms of people living with HIV such as fatigue and pain, found to be the common problems experienced by elderly people living with HIV. These results are consistent with findings from existing research from other scholars which suggest physical experience that include pain and fatigue [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e]. Additionally, in research with elderly people living with HIV, fatigue was reported as the most common physical symptom in elderly with HIV [\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e]. Fatigue may be exacerbated or more burdensome because of the ageing process, disease process, inactivity and deconditioning, and poor sleep [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e]. Not only are symptoms such as fatigue associated with physical experience and poor quality of life, however; pain is also known to impact on ADL [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e]. Whilst pain has been identified as a prevalent problem in elderly living with HIV, other musculoskeletal symptoms have been largely neglected in clinical practice, and little research has been conducted [\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eBeside challenges that come with ageing, participants demonstrated how HIV contribute to the problem of memory. Majority of participants illustrated forgetfulness challenges when performing activities of daily living. The study findings reveal that elderly people experience forgetfulness when bathing, dressing and brushing their teeth. One participant mentioned that she would forget that she had opened a tap of water in her bathroom and water will run all over the place. During dressing activity, buttoning appropriately was also reported by participants. Forgetfulness associated with accomplishing activities of daily living seem to have substantial negative impact on the elderly people living with HIV. Declines in the performance of ADL contribute to the level of independence that elderly living with HIV maintains and are important predictors of health and well-being outcomes, including quality of life. The ability to perform activities of daily living often diminishes in elderly living with HIV due to progressiveness of the disease as well as ageing [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e]. The data of this study have shown a negative association between cognitive function and activities of daily living in elderly living with HIV. This is in line with several previous studies. Loss of activity of daily living independence associated largely with declines of memory function and personal care activities showing the largest effects [\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e]. Altgassen et al [\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e] studies have shown that the presence of memory impairment could affect the functional abilities in elderly living with HIV, particularly the activities of daily living. Boss et al [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e] have added that memory dysfunction had a strong impact on activities of daily living dysfunction. Kraal et al [\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e] found that memory impairment also interferes with health-related quality of life amongst elderly population. Memory impairment has also been reported to be associated with poor performance of activities of daily living in elderly people living with HIV [\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eAmerican Occupational Therapy Association [\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e] describe functional mobility as moving from one position or place to another during performance of everyday activities such as in-bed mobility, wheelchair mobility, and transfers e.g., wheelchair, bed, car, shower, tub, toilet, chair, floor. It also includes functional ambulation and transportation of objects. According to the International Classification of Functioning framework, environmental factors directly influence participation in individuals [\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e]. In order to address functional mobility, it is therefore imperative to undertake home assessment to identify environmental barriers so that appropriate modification can be made to enhance participation in activities of daily living. Elderly people with functional mobility challenges are at an increased risk for dependence in daily activities, a decreased quality of life, and at a higher risk for mortality [\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e, \u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e]. Therefore, preventing mobility disability is essential in the growing elderly population to extend independence, functional ability, and longevity [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. In view of the above, moving from one position to another during performance of activities of daily living is of outmost significant. This study revealed that elderly had experienced functional mobility barriers such as inaccessibility, unsupportive family members and community stigma. Some participants illustrated how difficult it is to access toilet, shower or bathroom when using wheelchair. Poria et al [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e] demonstrated that many elderly people are completely unable to access toilets in their homes due to the narrow doorway to enter inside. Possible environmental modifications that would make transfers possible for wheelchair users including a wider doorway, more space and the addition of grab bars or other transfer aids near the toilet. Furthermore, it is suggested that the size of the shower, space for transfer near the toilet, and presence and location of transfer aids all affect elderly people ability to transfer safely in bathrooms [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eWhile many elderly people remain sexually active and may have concerns about sexual function and their problems are infrequently addressed by the health sector [\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e]. This study found that sexual activity is still significant amongst elderly. The results of this study demonstrated the lived experiences where elderly indicated loss of interest in sex as barrier. Subsequently, the findings of the study suggest that it is as result of living with HIV or after the diagnosis of HIV. Furthermore, other contributing barriers identified from the study findings include mental, emotional, social and physical barriers. Some participants reported experience of body pain, tiredness during sexual activity. It was also evidence from the findings of the study that elderly have experienced irritability, lack of motivation and pain during sexual activity. It is stated by De Lamater [\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e] that this age group of elderly has a higher probability of sexual dysfunction due to ageing and development of chronic illnesses such as HIV. Commonly reported sexual dysfunction problems among elderly include lack of interest in sex; arousal problems; climaxing too early; inability to achieve an orgasm; experiencing pain during sex; not finding sex pleasurable and anxiety about performance [\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e].\u003c/p\u003e \u003cp\u003ePersonal hygiene in occupational therapy profession has to do with obtaining and using supplies; removing body hair (e.g., using razor, tweezers, lotion); applying and removing cosmetics; washing, drying, combing, styling, brushing, and trimming hair; caring for nails (hands and feet); caring for skin, ears, eyes, and nose; applying deodorant; cleaning mouth; brushing and flossing teeth; and removing, cleaning, and reinserting dental orthotics and prosthetics [\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e]. Nails maintenance was reported as barrier by elderly. This study results indicated that they get tired easily and struggle to cut their nails as they find it hard to reach down or bend their bodies. Notably, elderly emphasized the fact that they easily get tired when cutting nails. Therefore, family members serve as support system to do this activity. It is not clear if tiredness resonates from HIV alone or could it be the only possible determinant or ageing also play significant role. Further research could be explored to make such distinction. Although there are various reasons and factors which could hinder or become obstacles to maintain a proper and effective personal hygiene practice amongst elderly. There can be categories as physical, psychological and social factors as well as health conditions [\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e]. This study also identified removing of body hair amongst elderly as problematic. One participant said that her body fails her when participating in this activity while others mentioned that they easily get tired. Fatigue is perceived as the contributing factor that they struggle to remove their body hair. They have illustrated that they depend on others or family members. A study done by Jadhav [\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e] stated that when elderly people are dependent on others in personal hygiene, they loss sense of dignity and self-esteem. The basic reason for not maintaining proper personal hygiene in elderly may be due to physical mobility and ill health conditions.\u003c/p\u003e \u003cp\u003eNutritional issues of elderly treated for HIV, and emphasis should be placed on promoting healthy eating habits among this population. The findings of this study demonstrated eating challenges that included loss of appetite, vomiting and diet modification. It was evident that some participants experienced lack of appetite to consume food. The participants mentioned problems of low energy and loss of weight. The findings of this study concurred with that of [\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e] indicating that the HIV infection does not require a complete change in eating habits. However, paying attention to rational nutrition and the supply of essential nutrients is important. Meals should be varied and provide sufficient energy. According to study done by Duda et al [\u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e] confirmed that the recommendation of a higher intake of certain nutrients is justified, because it reduces the risk of full-blown AIDS. Besides other challenges associated with HIV, diet medication was also reported as barrier. Bell et al [\u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e] reported that the older people living with HIV are usually more likely to be worse off in terms of spending money on diet adjustment, than their peers. People living with HIV including elderly have much higher expenses than members of the average population. As a result people living with HIV are spending up to an average of 30% of their income on medications [\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e]. A recent study found that 46% of HIV positive people are struggling to afford nutritional diet [\u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e]. The study found that 60% of people with HIV are struggling to afford prescribed diet for their illnesses in addition to HIV [\u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe findings of this study demonstrated emotions associated with their HIV status that included being hurt by the results of being HIV, shocked by the HIV status, fear of what will happen and suicidal thoughts. Something noteworthy is that number of study participants reported high levels of psychological distress, especially for those who lacked social support, family support and access to care from health facility. Some participants also felt hurt and pain when they discovered that they are HIV positive. HIV has a negative psychological impact on the well-being of the older adults who are infected by this pandemic. Similarly, the study done by Bhavan et al [\u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e] indicated that many elderly people living with HIV reported sadness and worry as a result of their deteriorating health and the grave prognosis. Consistently, this negative impact manifested in many forms, including fear, trauma and grieving, isolation, hopelessness and stigmatization [\u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e]. Some participants felt suicidal after they discovered that they are HIV positive. The suicidal thoughts were outcomes of feeling of pain, denial and shock. As one of the participant (priest) said, that he has never imaged that one day he could be infected with HIV by his wife who seemed faithful. Suicide risk in HIV-infected may be higher than in populations with other chronic medical illnesses [\u003cspan citationid=\"CR52\" class=\"CitationRef\"\u003e52\u003c/span\u003e]. Evidence suggests that risk of suicidal behaviour increases during the initial weeks following a diagnosis of HIV disease and then declines as patients adjust to their HIV status [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. However, as elderly people\u0026rsquo;s health and quality of life decline, risk of suicide may again increase, particularly among older patients, who frequently experience poorer health-related quality of life when progressing to AIDS [\u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e53\u003c/span\u003e].\u003c/p\u003e"},{"header":"Conclusions","content":"\u003cp\u003eThe findings of this study highlighted barriers associated with ADL that include psychological, physical, cognitive, functional mobility, change in sexual engagement, personal hygiene, eating challenges and emotions associated HIV status. Addressing the needs of this population is the primary domain of the rehabilitation of elderly people which may greatly assist to inform the research and the clinical management of those ageing with HIV infection. Subsequently, there is a need to develop occupational therapy programmes to help promote health and well-being of ELHIV related to ADL. Therefore occupational therapy is a unique profession by its nature to promote occupational well-being, functional independence as well as health using ADL.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eADL\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eActivities of Daily Living\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eAIDS\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eAcquired Immunodeficiency Syndrome\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eART\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eAntiretroviral Therapy\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eHIV\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eHuman Immunodeficiency Virus\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eELHIV\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eElderly living with HIV\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003eEthics approval is 601/2018 and consent to participate is GP_20190_203\u003c/p\u003e\n\u003cp\u003eConsent for publication: \u0026nbsp;Yes\u003c/p\u003e\n\u003cp\u003eAvailability of data and material: Not applicable\u003c/p\u003e\n\u003cp\u003eCompeting interests: Not applicable\u003c/p\u003e\n\u003cp\u003eFunding:\u0026nbsp;Not applicable\u003c/p\u003e\n\u003cp\u003eAuthors\u0026apos; contributions:\u0026nbsp;\u0026nbsp;Not applicable\u003c/p\u003e\n\u003cp\u003eAcknowledgements:\u0026nbsp;Not applicable\u003c/p\u003e\n\u003cp\u003eAuthors\u0026apos; information (optional):\u0026nbsp;\u0026nbsp;Not applicable\u003c/p\u003e\n\u003cp\u003eClinical Trial Number in the manuscript: Not applicable\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eMbalinda SN, Lusota DA, Muddu M, Nyashanu M. 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J Acquir Immune Defic Syndr. 2012;33(2):185\u0026ndash;93.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Activities of daily living, Elderly living with HIV, Experiences, Health, Quality of life, Wellbeing","lastPublishedDoi":"10.21203/rs.3.rs-4395083/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4395083/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eHIV places enormous stress on the well-being of infected elderly people when performing activities of daily living. Surviving with HIV can be extremely challenging at any age, however elderly people living with HIV have to be contended with physical, mental and psychological barriers. Both ageing and HIV infection can work separately or interactively to reduce their human immune response. Unmet needs related to activities of daily living among elderly people with HIV may lead to adverse consequences resulting in deteriorating health outcomes. The purpose of this research study was to explore barriers experienced by elderly living with HIV related to their engagement in activities of daily living.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003e An explorative qualitative study was conducted, using a purposive sampling method to recruit participants at three public healthcare district hospitals. The researcher conducted semi-structured Interviews of 10 focus group discussions with elderly people aged 60 years and above who had lived with HIV. The data was analysed thematically.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eThe key themes that emerged included psychological, physical, and cognitive barriers. Furthermore, other barriers were functional mobility, change in sexual engagement, personal hygiene, eating challenges, and emotions associated with their HIV status.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eThis study concludes that elderly people living with HIV experience several barriers during their engagement in activities of daily living. Understanding the barriers of the elderly people living with HIV will inform the development of appropriate interventions to improve their well-being, health and quality of life. Therefore, there is an urgent need to develop occupational therapy programme to assist in providing appropriate care for the elderly people living with HIV.\u003c/p\u003e","manuscriptTitle":"Exploring barriers experienced by elderly living with HIV related to their engagement in activities of daily living.","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-06-27 08:46:14","doi":"10.21203/rs.3.rs-4395083/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"d287388c-1990-4330-b323-f9e7a1e71dc6","owner":[],"postedDate":"June 27th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2025-04-02T08:54:00+00:00","versionOfRecord":[],"versionCreatedAt":"2024-06-27 08:46:14","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-4395083","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4395083","identity":"rs-4395083","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}