External support

2.8.4 External support

Caregivers need information on HIV prevention and care, access to basic supplies (blankets, aspirin, sleeping mats, etc.), training, and referrals for medical care. They also require social

31 assistance to support HIV/AIDS orphaned children (UNAIDS, 2006). Furthermore caregivers need a clear understanding of their duties and the limits of their responsibility for any client.

Caregivers also need to know who or where they can refer clients to when the client’s condition calls for greater expertise or when they are unable to manage the situation alone.

Good communication and referral mechanisms within AIDS care programmes are essential.

Programmes should aim to strengthen their own foundations and create a supportive environment for caregivers at every level through networking and partnerships with other relevant organisations and individuals (Armstrong, 2000).

Organisations and individuals working with caregivers should ensure that the caregivers are involved in the design, implementation, and monitoring of HIV prevention, treatment, care, and support programmes at the national and community level (UNAIDS, 2006). Research suggests that caregivers who are not supported by programmes face many challenges including caring in a void of training, and lack of support from other programmes including material inputs like gloves and medication. Caregivers also need to have access to medical care and the health system for themselves and their dependents. These facilities should be easily accessible without barriers such as long waiting times, transportation difficulties, and inaccessible services (UNAIDS, 2008).

2.9. Conclusion

This chapter reviewed literature concerning the role of caregivers in the HIV/AIDS context. It examined the psychological impact of caring on the caregivers of HIV/AIDS orphans. A

32 general systems framework was adopted in order to explore the lived experiences of the caregivers.

Systems theory is considered general because it takes into account numerous systems that interact with other systems. General Systems Theory also seeks to gain a holistic view of a phenomenon (Covington, 1998) and explores people's relationships with their environments.

The use of this theory allowed the researcher to understand the informal caregivers’

experiences in relation to the broader systems/organisations that also influence their work and are part of their work and mental well-being.

The literature suggests that the majority of caregivers in the HIV/AIDS field are women.

These women are grandparents; aunts, neighbours, community members, and young women and girls. Although it is less well document males and young boys also occasionally adopt the caregiving role. A lesser but not insignificant number of men do provide care in the home and volunteer in home-based care programmes. However economic, social and cultural patterns place males in more favourable positions to cope with the impact of HIV/AIDS caregiving.

Research shows that the caregiving burden in the context of HIV/AIDS results in financial and psychological strain on the caregivers. Research further suggests that this stress is due to organizational factors and major work stressors (Armstrong, 2000; Cooper, 1983).

The most prominent model in stress evaluation and coping is based on the transactional stress coping model developed by Folkman and Lazarus (1990). In the transactional model stress is

33 defined as the outcome of interaction between the organism and the environment. An event in the environment is considered to be a stressor only if the organism's appraisals of it, and of its own resources, suggest that it is threatening or disturbing (Singer & Davidson, 1986). When an individual appraises a stressor as exceeding his or her resources and hence threatening to his or her well-being (McCausland & Pakenham, 2003) that individual’s stress levels rise, eventually resulting in an inability to cope and burnout. The person’s physical and mental health, personal relationships and standards of care are all likely to suffer as a result of burnout (Aids alliance, 2007).

Freudenberg (1974) characterized burnout as a state of fatigue and frustration arising from unrealistic and excessive demands on the personal resources of health and service workers.

Freudenberg (1974) suggested that a person attempting to achieve unrealistic expectations, whether imposed socially or internally, may become physically or mentally exhausted.

Bennett et al. (1994a) described burnout in the context of HIV/AIDS care as a function of the situation, social context and nature of the job rather than of the nature of the person doing the job. In addition, Defilippi (2003) suggested that the difficulties experienced by orphans and other children affected by the HIV/AIDS epidemic further exacerbates the risk of burnout for AIDS caregivers in developing countries.

The vast number of stressors experienced by caregivers in the HIV/AIDS field necessitates the development of specific ways to cope with the stress experienced. , Caregivers need to find ways to cope in order to maintain sound physical, mental, and emotional well-being.

Donald et al., (1997) characterised coping as a process of interaction between an individual and an environment, each with its own set of resources, vulnerabilities, potential and needs.

This coping model includes two forms of appraisals, namely primary and secondary

34 appraisals. Primary appraisals focus on the emotional aspect of coping with distress. In contrast, secondary appraisals focus on what to do or how to cope in a specific environment.

This form of appraisal also includes an appraisal of the response to a specific action, which in turn influences the kind of coping style to be adopted for survival (Folkman & Lazarus, 1990).

Finally, social, psycho-social, financial, and external support for caregivers is important within the AIDS field. This support enables caregivers to play a physically and psychologically demanding and yet vitally important role in the fight against HIV/AIDS.

35