The social capital framework was used to understand the current community perceptions and dynamics related to current care and support for those living with HIV/AIDS. Social norms regarding gendered social and economic expectations also inhibit and limit desires to assist in the care and support of those ill with HIV/AIDS.
Overview
Qualitative techniques, in the form of six focus group discussions, were used as a means of data collection. Chapter six presents an analysis and findings of the focus group discussions according to the theoretical framework of Social Capital.
Background to the Study
Implicit in this is inadequate access to health care facilities, resources, and necessary supplies needed to care for those who are ill. A further consideration is the fact that the need for care and support will continue to increase, straining an already inadequate health care system, as people currently infected with HIV develop AIDS-related symptoms.
Problem Statement
In the South African context, where social support constitutes a significant level of care received by HIV/AIDS patients, mobilization of social support and collective action in the local community should be considered of utmost importance and receive due attention and encouragement.
Purpose of this Research
How can the identified areas of care and support be best met according to KwaNgcolosi community members. What would enable or hinder more active participation in care and support according to the KwaNgcolosi community and what the identified care and support activities would look like.
Objectives of the Study
To explore the perceptions of a cross-section of community groups regarding care and support for those with HIV/AIDS. To explore perceived barriers and enabling factors to increase more active care and support for those with HIV/AIDS.
Significance of Study
Exploring and understanding perceived community resources in caring for people with HIV/AIDS. Social cohesion, and how these can be understood as potential means to strengthen better access for HIV/AIDS patients, especially in terms of psychosocial resources and community support.
Introduction
Definitions of Social Capital
Coleman clarified and mentioned some of the mechanisms that generated social capital (reciprocity, expectations and norms), the consequences of its possession (privileged access to information) and the social organizations that provide the context for its emergence (Coleman, 1988; Portes, 1998). According to this, if the economic system works well, it is a proof of the area's high levels of social capital (Siisiäinen, 2000).
Forms of Social Capital
Levels of Social Capital
Based on this, it can be concluded that in an area such as KwaNgcolosi, the level of involvement in economic and social issues that arise directly or indirectly from HIV/AIDS can be indicative of the amount of social capital present within this community. However, this form of social capital can be exclusionary, as discussed under destructive social capital (2.6).
Cognitive and Structural Social Capital
Within KwaNgcolosi, the two structures known to be important for HIV/AIDS care are the KwaNgcolosi Clinic and Home Caregivers. Although there are other organizations operating in the community, the participants in the discussions for this thesis do not mention them or they mention them disparagingly.
Functions of Social Capital
Second, social capital enables individuals to evaluate risks and opportunities by enabling evaluation—by discussing with others the reputation and perceived trustworthiness of a person or agency before taking any action. Third, access to social capital and discussions with others enable “vetting” of situations, individuals, and agencies—namely, knowledge of available political, social, and economic choices.
Social Capital and Health
More than simply acquiring information, individuals need to be able to discuss information with others to gain understanding.
Elements of Social Capital Used in This Study
- Trust
- Reciprocity
- Social Norms
- Social Networks
According to Bourdieu (1985), social networks are not solid, eternal structures resulting from a single institutional act, but rather require continuous efforts and investments. This implies that informal care is contextual and is influenced by the nature, number and type of social networks within that context.
Destructive Social Capital
In addition to the above, it should be noted that social capital is not equally accessible to everyone. Access to social capital can be limited due to geographic and social isolation and socio-economic situation, which can also affect the value of social capital.
Limitations of Social Capital
Definition of Social Capital used for this Research
Conclusion
Introduction
Contextualising the Issue: HIV/AIDS and the Community
The South African Rural Community
Economic Impact of HIV
Illness or death as a result of HIV/AIDS also often results in the loss of the household's primary breadwinner (Demmer, 2006). As well as losing work to someone with HIV/AIDS, the disease can also result in the primary carer losing work to care for the sick person (Gregson et al, 2007). .
Social Perceptions
Nyblade (2005) divides this into primary and secondary stigma, with primary stigma arising when someone who has HIV/AIDS imposes a stigma on themselves. Secondary stigma arises by association, whereby family members and acquaintances of someone with HIV/AIDS may also carry the same social stigma (Ogden & Nyblade, 2005).
Care and HIV/AIDS
- Understanding Care
- Providing Care
- Social and Community Expectations and Roles
- Caregivers
There is a large body of literature focusing on HIV/AIDS caregivers in the community (see below), which will be briefly discussed in this chapter, primarily to help contextualize the disease. Altruism can also be cited as a reason for providing care, especially when it comes to a family member, as those who take on the role of caregivers are concerned about the well-being of the one who is ill (Linsk & Pointdexter, 2000).
Conclusion
Volunteer Home Based Care workers spend a disproportionate amount of time providing care, thus missing opportunities for increasing human capital with capacity building through developmental programs (Akintola, 2008). However, there is evidence to suggest that Home Based Care organizations are not growing at a rate sufficient to meet the growing demands for care (Nsutebu, Walley, Mataka, & . Simon, 2001).
Introduction
Study Design
Interpretative research emphasizes understanding phenomena in context, as well as positioning the researcher as the primary "instrument" for collecting and analyzing data (Terre Blanche et al, 2006). When using any data collection technique, it is always helpful to be aware of the strengths as well as the limitations.
Study Area
In addition, as the primary instrument, the researcher must be able to listen to the participants, as well as accurately and appropriately describe and interpret his own presence in the process and the overall investigation. This means that the researcher must be conscious and critically reflexive of his own role and influence in the process, as well as his own constructed understandings.
Study Sample
Screening
This resulted in one focus group, which includes two participants who are currently home caregivers. However, this added richness to the study and generated some interesting additional information to discuss focus group dynamics.
Data Collection Procedure
Focus Group Dynamics
The researcher sat at a table that served as a sound recorder and took notes. In this study, during the focus group discussions, verbal reports and discussions were orally translated into English for the researcher, and later both English and Isizulu were transcribed from a voice recorder.
Data Analysis
The focus group transcribers for this study are the researcher's African colleagues who are members of the same academic institution and are familiar with both traditional African and Western concepts and insights, as well as trained and experienced in the process of data transcription and translation. The final step in the data analysis, according to Terre Blanche et al (2006), was to compile the interpretation of the data and check it.
Triangulation
Ethical Considerations
Informed consent
Confidentiality
Nonmaleficence and Beneficience
Trustworthiness of this study
- Credibility
- Dependability
- Confirmability
- Transferability
Confirmability refers to whether the findings and conclusions of this study are true to the research objectives, rather than the researcher's values and biases (Terre Blanche et al, 2006). This refers to whether the results of this research can be transferred to other contexts (Terre Blanche et al, 2006).
Conclusion
As the participants for this research were deliberately taken from different areas within KwaNgcolosi, it can be concluded that the findings of this research accurately represent the current situation regarding community perceptions of care and support for someone who has HIV/AIDS. The transferability of this study can also be determined by comparison with available literature on the findings of similar studies (see literature review).
Introduction
HIV/AIDS Care and Support in KwaNgcolosi
- The Link Between Community Perceptions and Care
- Family Attitudes
- Individual‟s Own Perceptions of HIV/AIDS
- Symbols of Stigma
- Thoughts on Organizational Care and Assistance for Those Living
- Social Perceptions of Ideal Care and Support
- Organizational Care
- Structural Assistance for Care and Support
According to Bond et al (2002), stigma acts as a significant barrier to adequate care and support for those ill with HIV/AIDS. There are several other sources of care for those with HIV/AIDS within the KwaNgcolosi community.
Identified Obstacles to Achieving an Ideal Situation
Stigma, Shame and Silence
Many participants indicated that they knew that HIV/AIDS can present itself “in different ways,” although they described current social norms and community representations as still stigmatizing HIV/AIDS. Therefore, there appears to be a cognitive recognition that HIV/AIDS should not be shameful, although this still appears to be the dominant normative perception in the community.
Community (Un)Willingness for Involvement
They're drunk, they smoke, they're rude, they crush weed, they can't listen to another person talking. According to Wolff, Busza, Bufumbo and Whitworth (2006), drinking is a culturally and socially connected activity, with many important local meanings attached, with gender norms suggesting that women are traditionally expected to stay at home and take care of household duties. to come , while men are expected to use alcohol as a display of masculinity (Brown, Sorrell, & . Rafaelli, 2005, Wolff et al, 2006).
Socioeconomic Resources
Socio-economic resources as a perceived barrier can be understood considering that it is traditionally the men who are expected to be the primary breadwinners and provide for their household (Seeley, Grellier & Barnett, 2004).
Proposed Solutions to Perceived Obstacles
Education
If you take anyone, then you get people who will take their skills and use them selfishly for people they like in the community. So if these people are going to have to do that kind of work, they're going to be people who aren't going around gossiping.
Changing Social Norms
I would like to be trained to talk to them, have a conversation with them and tell them there is no difference between you and me. However, there was a difference between the age groups of men in that the focus groups were men of both 18 years of age. -25 and 26-45 said they would like to be trained on how to talk to someone with HIV/AIDS, while the men aged 46 and over seemed to feel comfortable talking to those who are sick.
Collaboration
The women aged 18-25 were similar to the men in the same age group in that they talked about taking on different roles so that care and support became a joint effort. However, the women aged 18-25 differed from the men in the same age group in that they talked about coming together and forming an organization through which they could work together to provide care and support.
Summary of Results
Yes, you clean the person, you bathe, you feed the person, if the person could not stand, you might cook the porridge. If you can even the blankets should be washed and take the person outside for fresh air and also the floors.
Introduction
Social Cohesion within KwaNgcolosi
Social Capital, Social Cohesion and Health
As such, the emotions and perceptions of an individual with HIV/AIDS can be seen as an indicator of the perceived attitude and situation in the community. This confirms the current lack of social cohesion observed within the KwaNgcolosi community regarding HIV/AIDS.
Understandings of Care and Support for Those with HIV/AIDS
How Trust Influences Care and Support
Trust (or mistrust) is evident in the social interactions between those who are ill, family members and other community members; Home-based caregivers and other health care workers. However, trust sustains social capital (Putnam, 1995), and when trust is not present, community networks are lower.
Expectations of Reciprocity Influencing Care and Support
As such, according to focus group participants, individuals who function according to the principles of Ubuntu before becoming ill can expect reciprocal acts of care and support when ill. There is also a perception that those who are not treated well when they first need care and support are perceived as deserving by family members.
Ways of Best Meeting the Identified Care and Support Needs, According
Encouraging and Fostering Social Networks
Therefore, in such cases, care is provided out of duty, or because there is a perceived benefit, such as a social grant. This can be seen to be done by intrinsic motivational factors, such as compassion for the ill, as there is no perceived future benefit to caring for someone with HIV/AIDS.
Gendered Social Norms and Roles
Perceived Obstacles to Meeting Identified Care and Support Needs
- Trust, Mistrust, Cynicism and Suspicion
- Destructive Social Norms
- Restrictive Social Norms
- Reciprocity: The Expectations of Expectations
As a result, none of the participants felt that any community member would trust any formal health worker to help care and support those who are ill. 18.3% of survey respondents felt that home-based caregivers could only be trusted to a very small extent, 11.8% said to a small extent, 21.1% said average, 29.1% said to a greater extent and 19.4% felt that they could be trusted to a great extent.
Perceived Enabling Factors to Meeting Identified Care and Support
Social Networks
Social networks are important because they provide access to both information about HIV/AIDS and resources to help care and support people living with HIV/AIDS. As such, those individuals in the community who are structurally at different levels than community members can provide community members with new, useful information about how to care for and support someone with HIV/AIDS.
Conclusion
Within KwaNgcolosi, due to the lack of trust around issues related to HIV/AIDS, potential social networks remain untapped. According to community members, as a result of mistrust, friends and neighbors find it difficult to visit, being blocked either by the patient himself or by his/her family members.
Introduction
Focus group participants felt that care and support should be motivated by unconditional concern for those who are ill and showing them that they are still loved and accepted. Care and support should be the physical care of the sick, as well as social and emotional support according to their needs.
Limitations of the Study
All focus group participants expressed a desire for more education about the disease and mentioned sources of information such as home care providers and the KwaNgcolosi clinic. Some answers given during this focus group differed from other group discussions – including that this was the only group to mention the KwaNgcolosi clinic.
Recommendations
Project Recommendations
This was felt to promote the perpetuation of the idea of segregation and contradiction for HIV/AIDS related issues. Although many focus group discussions mentioned the awareness that HIV/AIDS is not necessarily acquired by "behaving badly" and that it can be acquired.
Research Recommendations
The way in which the building is used for HIV/AIDS facilities and services should therefore be reconsidered and possibly restructured so that there is no obvious difference between areas for HIV/AIDS-related problems and other diseases. It therefore appears that although there is a cognitive recognition that HIV/AIDS should not be a shameful disease, this has not been internalized as no alternative explanations have been given for contracting the disease.
Policy Recommendations
Social capital and feelings of neighborhood insecurity: a multilevel population-based analysis in Malmö, Sweden. Disruptive social capital: (un)healthy socio-spatial interactions among Filipino men living with HIV/AIDS.
