African Journal pplied Human Sciences

Transcription

1 ISSN: X African Journal 0 pplied Human Sciences VOI.UME I NUMBER ISSUE African Journal.Of Applied Human Sciences A publication of the School of Applied Human Sciences KENYATTA UNIVERSITY,--(

2 CARE PROVISION CHALLENGES AND CAPACITY ENHANCEMENT OF FAMILY CAREGIVERS OF PEOPLE LIVING WITH HIV AND AIDS IN THIKA DISTRICT Lucy Njoki Kathuri-Ogola'", Olive Mugenda', and Francis P. Kerre l. 1. Kenyatta University, P. O. Box , Nairobi, Kenya * Abstract People Living with HIV and AIDS (PLWHA) often require specialized care especially from those closely related to them. The task of caregiving to PLWHA can be a daunting undertaking in view of the fact that there is no validated cure yet to HIVIAIDS. Most of this care for the PLWHA takes place in the home and is likely to be done by afamily member. However, very little is understood about the challenges these caregivers encounter and their proposed strategies to enh ance their care provision capacity. The study therefore, sought to investigate the challenges of care provision and capacity enhancement strategies of family caregivers (FCGs) of PLWHA in Thika District. Data collection was done using interview schedules for a sample of 177 FCGs and Focus Group Discussion (FGDs) with 40 Community Health Workers (CHWs). Data was analyzed both quantitatively and qualitatively. The results showed that over four fifths (93%) of the FCGs experienced care provision challenges. Th ese challenges included inadequate finances (83%), food provision (56%), stress (52%), stigma and isolation (32%), inadequate medicine and supplies (24%), difficult care recipient (19%) and strain on children education (13%). The FCGs proposed strategies which they felt could enhance their capacity namely; economic empowerment (69%), regular training (58%), psychological support (42%), stigma reduction (30%) and sustained provision of medicine and supplies (17%). In order to enhance the FCGs capacity as well as improve the quality of care provided to PLWHA the FCGs would need an effective and sustained implementation of these strategies. Key words: Family caregiver; care provision; care provision challenges; capacity enhancement; HIVandAIDS; PLWHA INTRODUCTION HN and AIDS has remained a serious health issue globally. The HN IAIDS epidemic has strained the health sectors of most developing countries, reducing their capacity to respond (Shebi, 2006). As the number of PLWHA increase, the gap between demand for and available healthcare services continue to widen. Consequently, Home-Based care (HBC) has been preferred for its benefits for the person living with HIV/AIDS (PLWHA) and for family members in the sense that it allows the sick person to be cared for in a familiar environment (Jackson 2002; Akintola, 2006). Care to PLWHA is particularly important because despite the fact that PLWHA can be healthy, strong and live perfectly =normal' lives they can experience a range of symptoms that will affect their day-to-day life, and for which they will need care and assistance (Leake 2009). According to Jackson (2002) the expansion of HIV/AIDS epidemic increases the burden of care to PLWHA to the home and community. 90

3 In Kenya, HBC activities have been designed to take care of those that have been discharged from hospitals at horne in a bid to foster continuity of the ill persons care from the health facility to the horne and community(nascop/moh (2002); NASCOP,2002). In the horne, family caregivers (FCGs) take charge for the care of the PLWHA. A family caregiver refers to a person caring for a sick or ill person with whom they are related either by marriage or blood. The FCGs provide practical help and nursing to PLWHA within the horne setting. Although the services of Community Health Workers (CHWs) are available within the HBC programmes, it is the FCGs who provide most of the care for the PL WHA in the homes. These FCGs are typically the, spouses, parents, children, siblings or other family members of someone diagnosed with HIY. The CHW s are charged with the responsibility of providing training on basic skills of care for PLWHA with the expectation that this will help the FCGs to cope with the challenges of care provision. The demands of the job may cause burnout which is a condition that combines extreme physical fatigue with emotional distress (NASCOP, 2002). In spite of this, the effectiveness of the HBC approach depends on many factors, the most critical of which is the readiness of the family to cope with their own challenges, such as the work of care provision, the cost of providing care and medication, the capability of coping with discrimination, the psychological effects associated with illness and the eventual death of the ill member (Limanonda, 2004). The present study was done to explore the challenges of care provision of PL WHA on the FCG and to investigate caregivers' capacity enhancement strategies. METHODOLOGY A cross sectional survey design was used for this study since it seeks to obtain information that describes existing phenomena by asking individuals about their perceptions, attitudes, behaviours or values (Mugenda and Mugenda, 2003). The study was carried out in Thika district, one of the seven districts of Central Province in Kenya whose main economic activities are agriculture and industries. The district exhibits rural and urban characteristics. Three divisions of Municipality, Ruiru and Kamwangi were selected. A total of 177 study respondents were selected from purposively selected Community Based Organizations supporting FCG to represent the three prong characteristic of the district of urban, peri-urban and rural. Data was collected using mainly using interview schedules and Focus Group Discussions (FGDs). Data was analyzed both quantitatively and qualitatively using Statistical Package for Social Sciences (SPSS). Descriptive statistics of frequencies and percentages were used for quantitative data. Qualitative data was transcribed to enable the researcher to capture fully all the information gathered.due to the massive amounts of qualitative information collected there was need to code and assign labels to various categories and themes so as to draw conclusions and conduct content analysis. RESULTS AND DISCUSSION The Socio-demographic Characteristics of Family Caregivers of PLWHA. The socio-demographic characteristics evaluated in this study included the caregivers' profile which inc1ude:- residence, sex, age, marital status, level of education, occupation, household type and income. Table 1 shows this data. 91

4 Tabl e 1: Demograpi hiic data 0fC arearvers Characteristic Variable Frequency Percent Residence (N=I77) Kamwangi (rural) Ruiru (peri-urban) Thika Municipality(urban) Sex (N=I77) Female Male Age group (N=177) Below 19 years years years years years years & above Marital status (N=I77) Married Not married/single Widowed/Separated/Divorced Educational level (N=I77) No Schooling Primary Secondary Post Secondary/tertiary Occupational status (N= 177) No job/unemployed Self-employed Casual labourer Salaried/Professional Household type (N=177) Male headed Female headed Income in KSHS (N=1l9) Less than Above Challenges encountered by family caregivers in care provision for PLWHA Care provision for a PLWHA can be a challenging undertaking. The study established the challenges that the FCGs faced in caring for the HIV infected family members. Over four fifths (93%) of the respondents admitted experiencing challenges as caregivers. Figure 1 gives a summary of these care provision challenges. 92

5 90 ~~, =======-~~--=-~=--, t- 60 ~ 50 o 0::: 40 w o +-'----'-r- CAREGIVING CHALLENGES ** Multiple responses allowed Figure 1. Challenges experienced by Family Caregivers of PL WHA Results in Figure 1, show that FCGs face numerous challenges as they provide care to the PLWHA. This relates to the observation by Limanonda (2004) that, caring for the PLWHA at home has many advantages as well as a number of limitations, the most critical of which are financial constraints, the readiness of the family to cope with the illness, the cost of medicine, the capability of coping with discrimination, the psychological effects associated with the illness. The financial Challenge This was the most prominent challenge. The FCGs noted that their income and that of their households had gone down significantly due to the fact that the number of dependants had increased. This increment was attributed to the care recipient falling ill, hence becoming a dependant and/or his/her children becoming the caregiver's dependents. Besides, some of them attested to abandoning income generation from jobs!businesses or reducing their man hours at their work stations to engage in care provision. A study by Steinberg Schierhout, and Ndegwa (2002) found out that where someone was either sick or had recently died due to HIV and AIDS related illnesses, more than 20 percent of the caregivers had diverted time from work or informal income generating activities to provide care in the home. They also asserted that paying for medicine or hospital bills especially once the opportunistic infections strike had taken up most of the income. According to NACC (2008), ARVs are free in Kenya since early 2005 but the user bears that cost of medical support services such as tests, medication and treatment for opportunistic infections as well as transport. These costs are more often than not met by the caregiver. This challenge was epitomized by the response of one caregiver during an interview. "1don't have money because 1need to take care of her demands and those of her children and my other family members ". (Woman taking care of her daughter) 93

6 On the other hand, facing financial difficulties has resulted in some of the FCGs engaging in multiple activities to earn income and this tends to compromise their care provision to some extent. The main income generating activities engaged in included casual labour, farm work, and household work (such as washing clothes). These activities therefore tended to consume time and energy of the FCes and thus limiting their attention to care provision. As one CHW put it; "They hare to do other work to make ends meet so they (caregivers) do not care well for the PLWHA." (FGD session) The general view of the FCGs was that household economic difficulties had intensified as a large proportion of their income was used to support care provision needs such as medical costs, hospital bills and transport to health facilities. In other cases there is lost income of the FCG as well as that of the PLWHA as they become dependants. "I've sold my cattle, poultry to get money for care giving. " (Man caring for single son) This particular challenge concurs with observations by Leake (2009), UNAIDS 2008 and Steinberg et al (2002) on financial costs of care provision. The challenge of Food provision Food is a basic human need. Moreover the intake of a nutritious diet is crucial in the management of HIV and AIDS as part of ART. This may explain why these FCGs experienced this challenge as they endeavoured to meet the nutritional requirements of the care recipients. This challenge in many cases was closely interlinked with finances since in most instances they had to incur an extra cost to meet the dietary requirements. This is illustrated by the response of a FCG during an interview. Mrs. N, who said, "I have money challenges...1 need money to take mgojwa (care recipient) to hospital and other basic needs... And the food that the care recipient demands... I have borrowed a lot of money. " (FCG interview) FCGs experiencing stress Stress was mainly attributed to thinking of the ill person and their children and/or the inability of the caregiver to adequately provide for or help the PLWHA as well as the other dependants in the family. Factors used to portray instances of stress in this study were sleep problems, anxiety, persistent headaches, feelings of frustration, loss/increase of appetite and poor concentration. Referring to stress, Mrs. F, who was taking care of her single daughter who has three children teary said, "Sometimes Iget stress but Ijust pity myself... But she's my child...1 know she'll never get cured and I really feel bad about it... and about my grand children. I sometimes think and Ifeel my head spinning... Especially when I see her and her children going without food. " (Woman providing care to her daughter) This particular response brings out aspects of helplessness and despondency that some of the caregivers may feel as they provide care to their chronically loved ones within a context of 94

7 inadequate resources. This kind of stress is likely to impact negatively on the FCGs as well as on their care provision and can be counterproductive as a CHW observed; "They [caregivers} are stressed especially because of thinking hard and do not want to do this work so sometimes treat the care recipients badly or reject them ". (CHW during an FGD session) These results correspond with the assertion of Pharaoh and Schonteich (2003) that the presence of an HIV positive member may strain the mental and physical well being of the household member caring for an HIV -positive spouse, child or relative. They assert that it puts physical and emotional strain on the caregivers involved, potentially undermining their health at the most basic level. The medicine and Supplies Family caregivers generally tend to assume the care provrsion role without any prior arrangement.. The study results indicated that over four fifths (84.2%) of the caregivers had no prior preparations before starting care provision. In addition, they have limited resources for care provision, including the ability to buy medicine, supplies (such as antiseptic agents, rubber gloves for daily care and cleaning) and do not have adequate access to healthcare systems. This challenge may be rooted in the acknowledgement by NACC (2008), that one challenge of implementing HBC is that there is no funding for delivery of kits, food or nutritional supplements. This lack of adequate resources tended to be multi-faceted and closely tied to the financial challenge as one FCG put it: "Sometimes there are no equipment... there is no money to buy even the polythene papers (to be used as gloves). No money to buy even the simplest diet. " (Woman taking care of sister) Challenges associated with Stigma and difficult care recipient Stigma has been singled out as one of the major bottlenecks in the management of HIV /AIDS. The study results showed that the caregivers still bear the brunt of stigmatization. And this stigma was not only because of the disease but also due to cultural expectations based on ascribed gender roles. This is as illustrated by the following response. "Most of my friends and people stigmatize me because of my mom (mother). They think it s wrong for me to take care of her hence they socially stigmatize me. " (Single male FCG) Stigma was depicted by such aspects as isolation (71.6%), people talking ill about the FCGs and their families (44.1 %) and inability to build and/or sustain friendships (36.3%). The isolation was felt because as the caregivers claimed, people who previously visited them did not frequent their homes anymore or did not want to associate with them a lot since they learnt of the illness. This was closely intertwined with the assertion that people talked badly about them and their families because of the PLWHA. One FCG said that some people had given them epithets in reference to HIV for example, "That home of the mgojwa (sick one) or kwa mwenye mdudu (family with a PLWHA) or others would claim that the entire family was heading to death since all of the regarded as being infected by HIV " Further, though most of the challenges were due to a lack of resources, the care recipient in some instances posed a challenge by being uncooperative even when resources were available. This may be further complicated by the relationship ties between the caregiver and the care recipient. 95

8 Consequently, this could expose the caregiver to infection. The subsequent response epitomizes this. "... She really mistreats me... She even wonders why I'm wearing gloves when cleaning her sores and gets mad at me so I don't usually wear them. " (Woman providing care to her mother-in-law) This could make the FCG susceptible to infection in the course of care provision. Strain on education Though free primary education had been introduced in Kenya by the time of the study, parents/guardians are expected to foot the bills for uniform, transport and medical care. The FCGs claimed that meeting the costs for educating their children was greatly compromised especially when they had to cater for emergency medical costs of the PLWHA. Also for some their earnings decreased due to less time spent earning an income as they provided care for the ill member who in some cases may have been the principle bread winner before falling ill. Caregivers Capacity Enhancement In the face of the challenges of care provision capacity enhancement is an important component of effective care provision to PLWHA. Figure 2 provides the caregivers preferred strategies for capacity enhancement. The Figure shows that their most preferred strategy is economic empowerment (68.9%), followed by training (57.6%), psychological support (41.8%), stigma reduction (29.9%), and medicine and supplies (16.9%) in that order. CAPACITY ENHANCING STRATEGIES FOR FAMILY CAREGIVERS I- Z W o a:::: wn, o STRATEGIES **Multiple responses allowed Figure 2. Capacity enhancement strategies for FCGs The FCGs were of the opinion that economic empowerment, as a capacity enhancement strategy, should be carried out to enable them get employment or engage in sustainable income generating activities. There was a consensus among the caregivers that the ~handouts' they received from 96

9 their support structures were short-lived and therefore not sustainable. Training as a strategy, was mainly with regard to empowering them be able to provide better care to the PLWHA. It was felt that regular training could enhance their capacity because they would always have up-to-date HIV and AIDS information and care provision skills. Psychological support as a capacity enhancing approach was seen as a way of dealing with the stress they experienced. Generally, the caregivers felt that they would be more effective in their work if they did not have to deal with so much stress. Stigma was identified as a care provision challenge by nearly a third of the caregivers. Consequently, stigma reduction through awareness creation among community members may help improve the way FCGs are treated by their family and community members and as a result benefit from unreserved social support. This is supported by the observation of D'Cruz (2002) that, social support is an important buffer for FCGs of PLWHA because with limited formal support options, these caregivers have to rely increasingly on informal networks. Provision of adequate medicine and supplies was seen as a means of capacity enhancement since these caregivers reported that they spend money on medicines for opportunistic infections, transport to and fees for tests in heath facilities. Supplies such as gloves were inconsistent and insufficient so they kept on spending their own money to acquire them. This in turn disempowered them economically rendering them less capable to perform their work. CONCLUSION AND RECOMMENDATIONS This study concludes that the main challenges faced by FCG in the provision of care to PLWHA included financial, food provision, and stress. Increased resource requirements in the family to meet the additional and special needs of the PLWHA were cited as the main underlying cause of the cited challenges of care provision. These challenges leave the FCGs in need of economic empowerment, regular training, psychological support, stigma reduction, and sustained provision of medicine and supplies all with the aim of enhancing their capacity. This means that the FCGs require targeted intervention strategies to counter the challenges so as to enhance their capacity. The following strategies for practice are therefore recommended. 1. For economic empowerment, there should be financial support for FCGs by government and NGO's through a community based revolving fund. This may require equipping the FCGs with skills for economic empowerment such as entrepreneurial skills, financial management, marketing and record keeping. Such skills will ensure that any IGAs the caregivers may start do not collapse after a short time due to their inability to manage them efficiently. This strategy would also greatly enhance their food provision capacity as well as reduce their stress. 2. Any training intervention of FCGs should focus on conducting of training activities before commencement of care provision. In addition training to be ongoing. 3. Stakeholders in the management and care of HIV and AIDS should work towards strengthening programmes aimed at reducing/eliminating stigma and discrimination towards PLWHA and their caregivers. 4. Government and NGOs working with the FCGs to educate them on the value of social networking as a buffer to stress. This will require formation of FCGs support group to work with the existing support groups for PLWHA. 5. Strategies should be put in place by government and its development partners to ensure that the FCGs have all the necessary requirements for care provision. 97

10 REFERENCES Akintola, O. (2006). Gendered Home-Based AIDS Research 5(3): care in South Africa: more trouble for the troubled. African Journal of D'Cruz P. (2002). Caregivers' Experiences of Informal Support in the Context Of HIV/AIDS. The Qualitative Report, 7 (3) Retrieved from: Jackson, H. (2002). AIDS in Africa: Continent in crisis. Harare: Zimbabwe SAfAIDS Leake M (2009) HIV and AIDS carein the home. Retrieved from: 19th March 2009 Limanonda, B.(2004). HIVIAIDS Prevention, Treatment and Care: Regional situation a nd issues for consideration. Retrieved from http//:www. unescap. org/esid /psis/ population /workingpapers/ HIV/AIDS Mugenda, O.M. and Mugenda, G.A. (2003). Research Methods: Quantitative and Qualitative Approaches. Nairobi: Acts Press. National AIDS and STI Control Programme (2002). Home Care Handbook: A reference manual for Home Based Care for people living with HIVI AIDS in Kenya :RoK!MoH. National AIDS and STI Control Programme/Ministry of Health (2002). Home Based Care for People Living with HIVIAIDS: National Home Based Care Programme and Service guidelines. Nairobi: NASCOP. National AIDS Control Council (2008). UNGASS 2008 Reportfor Kenya. Nairobi: National AIDS Control Council Pharaoh, Rand Schonteich, M (2003). AIDS security and Governance in southern Africa: Exploring the impact: Occasional paper No, 65 January Shebi, M, (2006). The Experiences and Coping Strategies of HIVIAIDS Primary Caregivers within two disadvantaged communities in the Western Cape Metropole. Unpublished PhD Thesis, Department of Psychology, Faculty of Community and Health Sciences, at the University of the Western Cape. Steinberg, M. Johnson, S., Schierhout, G. and Ndegwa, D. (2002). Hitting Home:How Households Cope with the Impact of the HIVIAIDS Epidemic. A survey of Households affected by HIVIAIDS in South Africa. Henry 1. Kaiser Family Foundation. 98