ABSTRACT

High HIV/AIDS prevalence rate among adults aged 15-49 is increasingly affecting elderly women, as caregivers of their sick family members and orphaned grandchildren, where they face various challenges and demands. These leave them poor, physically, and psychologically affected. Their vulnerability is compounded by the disintegration of the family support system and the inability of public and private sectors to adequately address their needs. This study explored the experiences of Elderly Women Caring for People with HIV/AIDS in Masindi District, Uganda. It sought to identify the caregiving roles of elderly women caring for HIV/AIDS people, explored the role reversal experienced by elderly women when caring for adult children with HIV/AIDS, identified the challenges elderly women face in caring for people with HIV/AIDS, ascertained the coping strategies adopted, and the support services available for them. A qualitative approach was adopted, 24 participants selected, including caregivers aged 60 years or more and key informants from The Aids Support Organization (TASO) and Masindi Hospital. In-depth face-to-face interviews were used to collect data. Data were analyzed using Creswell‘s (2009) concept of thematic analysis. Findings revealed that elderly women caring for HIV/AIDS people performed numerous roles, resulting in a role reversal when caring for dependent adult sick children, who are meant to care for these elderly parents. These posed economic, psychological, social, and physical challenges, thus adopting strategies to cope with the situation. Although family, friends, religious/community groups, government, and NGOs (TASO) provided support for the elderly caregivers, findings showed that efficient, optimal caregiving is lacking. The study recommends the Ugandan government to expand the Senior Citizens Grant (SCG) to include elderly caregivers for HIV/AIDS infected and affected people, to help meet their care needs. Also, there is the need to include the elderly caregivers in policy development and planning, on issues affecting them, to ensure that the policies/programs are working to meet their caregiving needs.

CHAPTER ONE INTRODUCTION

1.1 Background of the Study

In recent decades, population ageing has become a global area of concern culminating in two World Assemblies on Ageing: the 1982 Vienna and 2002 Madrid Conventions (UN, 1982, 2002), due to the worldwide increase in the proportion of older people. Globally, there are about 901 million older people, which is 12.3% of the total population (Da Silva Francisco, 2017). This makes ageing a universal issue since the elderly population is projected to continue growing. For example, He, Goodkind, and Kowal (2016) revealed that in 2015, the elderly population was 617.1 million, which is projected to increase to about 1 billion in 2030. Da Silva (2017) adds that this elderly population is expected to exceed two billion in 2050. The author further states that in Africa, the elderly population is also expected to rise from 64 million in 2015 to 220 million in 2050. This continued growth is also confirmed by Mugisha et al. (2016). In Uganda in particular, the elderly population also increased from 1.1 million in 2002 to 1.3 million in 2010 (UBOS, 2010), and a further increase is expected from

1.6 million in 2014 to 5.5 million by 2050 (UN, 2013), presenting a great challenge and economic burden to an unprepared continent (Marešová, Mohelská, & Kuča, 2015).

According to Beales (2000) and Choudhary (2013), old age is a period where many experience poverty and powerlessness especially in developing countries, as most elderly lack savings or monthly pension to take care of their wellbeing, thus depending on children, who may not be alive or are equally poor. In recent times, however, the adequacy of help, support and care of older Africans from the younger kin has declined (Kautz, Bendavid, Bhattacharya, & Miller, 2010). Among other factors, Kyobutungi, Ezeh, Zulu, and Falkingham (2009) indicate that increased weakening of traditional social support structures

is also a consequence of the HIV/AIDS pandemic. Over the last decade, HIV/AIDS  pandemic has caused an overwhelming effect on older women and men (Bejane, 2012) due to the increased care demands as well as support services by those infected and affected by the disease (Ssengonzi, 2009).

It is indicated that globally, 36.7 million people lived with HIV in 2016, with adults of 15–49 years accounting for 0.8% (UNAIDS, 2016). Even though across the globe the effect of HIV/AIDS varies, Sub-Saharan Africa is still more affected, with almost 1 in every 25 grown-ups (4.2%) being HIV infected (WHO, 2017). More so, 19.4 million people living with HIV were found in East and Southern Africa in 2016, with Uganda having the prevalence rate of 6.5% among adults aged 15-49 (UNAIDS, 2017). HIV/AIDS pandemic in Uganda, like in many countries in the sub-Saharan Africa is changing demographics and household structures (Kakooza & Kimuna, 2006). The disease has left many African family structures in a crisis, as it affects primarily working-age adults, hence posing an extra burden onto the elderly persons at a time they might need support as well as looked after (Kimuna, 2000). In many affected families, the elderly have been forced to become caregivers to sick family members and orphaned grandchildren, a role which younger relatives would have performed. This has generated a new focus on the changing of elderly roles, to being caregivers to younger generations (Kakooza & Kimuna, 2006; Kimuna & Makiwane 2007; Nala-Preusker, 2014; Seeley, Wolff, & Kabunga, 2009).

Moreover, this caregiving takes place in extremely limited conditions at home, where access to the formal health care system is very limited (Kipp, Tindyebwa, Karamagi, & Rubaale, 2006). Again, in sub-Saharan Africa, the primary caregivers of chronically ill family members are most often women, because caregiving is traditionally considered a role exclusively reserved for women, thus shouldering on them the burden of stressful tasks

(Bejane, 2012; Brannen & Petite, 2008; Hutchison, 2011). Depending on the intensity of caring for infected family members, caregivers often face unique challenges and demands (Nala-Preusker, 2014). Since the elderly are increasingly taking on the responsibility of being caregivers, it is vital to know the roles they perform, the role reversal and the issues that  come with it, challenges, coping strategies, and support services available for them. Notwithstanding their key role in providing care, limited research has been conducted in Masindi District to investigate their lived experiences. In response to this gap, the study explores the experiences of elderly women caring for people with HIV/AIDS in Masindi District, Uganda.